fighting the invader

2010-05-12T02:25:00.000Z

Hi to anyone who stillr eads this, this is Mags (Emma). I have been missing Kate, my poodle, so much recently and have been up late looking at photo's and emails when I found this one and amongst the tears it made me smile and I thought some of you may enjoy it and it may make you smile too.

Dear all

I thought you might be interested in knowing the result of an exhaustive

study performed at the home of well known researcher Kate Trundell into

whether exercising mind control over the growth of weeds and the reduction

of the ironing pile actually worked.

This study performed over a matter of the last week involved the researcher

staring wistfully at her ever increasing pile of ironing and overgrowth of

weeds and seeing if mind control could stop the weeds growing or indeed if

the weeds would keel over and disappear and that the clothes would

miraculously uncrease themselves. However, results published today revealed

the startling fact that it didn't matter how long the weeds or ironing were

glared at nothing changed. A change of tactic was then employed which

required the swallowing of a lot of voltarol (anti-inflammatory painkillers)

and activity and resulted in the garden being relatively weedfree.

Unfortunately, the ironing pile has still not reduced and so some of the

clothes have been put away in a creased condition. This may well require

another study to see if the clothes uncrease themselves in the wardrobe and

cupboards but at least the settee is visible now.

If anybody requires more information into this study please contact the

above named researcher to arrange a date to go out for lunch, or an evening

searching out the effects of alcohol or a visit by the researcher.

Looking forward to seeing you soon

Kate

PS Greece was lovely - brilliant not to have to cook and shop

I love her so much... I miss her everyday xxx

2010-04-21T17:03:00.003Z

Hello. It is Kate's sister. Just wanted to say hello to anyone who still visits this blog and remembers Kate .I cant believe that a year has gone . Still miss her so much .We will never forget you Kate .Forever in our hearts.

I love you my Poodle and miss you everyday. I don't know how a year has gone by...I still think about you and want to speak to you everyday...I remember your laugh and all the jokes we made, i miss the emails and all the times you have supported me. I hope I make you proud. I love you so much...you will never be forgotten... you are far too amazing xxxx

2010-01-30T21:48:00.002Z

Happy Birthday Kate.
Miss you more then you know.
Can't believe you're not here....
I love you and am thinking about you.
xxxxxxxxxxxxxxxxxxxxxxxxx

2010-01-06T16:10:00.002Z

Hello again it's Mags (Emma).

I did go to university and I am getting along okay I will post something better with more input another day. I wanted to put a post from my mum up, (Kate's sister) as she left it as a comment but I felt it would be read easier as a post.

Hi anyone who still looks at this. It is kates sister. Just wanted to say thank you to all who commented on emmas input. we all still miss Kate so much especially at this time of year.Not really sure what to write but just wanted to have contact with people who knew Kate and send love to you all .judy xx

2009-08-26T15:55:00.003Z

Hello to anyone that still reads this or stumbles across this amazing blog.

This is Emma again... I wanted to write down some things about Kate.
I miss her so much.. I'm finding things hard at the moment, I wake up and can;t get back to sleep. I think about her constantly. I keep getting angry at lots of people because they have no idea what thsi greif is like. What pain this really is... So many people have things worse I know but so many people have it better. I get so frustrated and upset and I just want her back. I keep finding feathers about... Kate told me she believed they were from angels.. She'd randomly find these white feathers. the day after Kate died I foudn a blue feather on my bed. I think that was a first sign, a distinction from her thats he was still about. I find feathers alot recently it is a small comfort. I keep belivign Kate is giving me messages through my I-pod. I know you think I;m crazy but out of abotu 2000 song I put it on shuffle and asked Kate to send me a message in teh next song and the song was Bon Jovi-Thank you for loving me.

I got into University I start in october but sometimes I really feel like whats the point?
The last yr Kate was ill I did an Access course and it was solely to get into university. I didn;t do any work for most of teh year and kate told me she wanted me to just before she died. i;d sort of given up. But because she basically made me promise I did it, 18 essays in like a month and a half all A-level standard. Well I did it and I'm gonna start University in october.

I want to post some lyrics but I don't know if people will like them or find them insanely depessing.

The song is called Machines and it is by Biffy Clyro

I would dig a thousand holes to lay next to you
I would dig a thousand more if I needed to
I look around the grave for an escape route of old routines
There doesn’t seem to be any other way

Cause I’ve started falling apart I’m not savouring life
I’ve forgotten how good it could be to feel alive

Crazy as it sounds you wont feel as low as you feel right now
At least that’s what I've been told by everyone
I whisper empty sounds in your ear and hope that you won’t let go
Take the pieces and build them skywards

Cause I've started falling apart I’m not savouring life
I've forgotten how good it could be to feel alive
I've started falling apart I'm not savouring life
Take the pieces and build them skywards

I've forgotten how good it could be to feel alive
Take the pieces and build them skywards
I've started falling apart I'm not savouring life
Take the pieces and build them skywards

I've forgotten how good it could be to feel alive
Take the pieces and build them skywards
I've started falling apart I'm not savouring life
Take the pieces and build them skywards

I've forgotten how good it could be to feel alive
Take the pieces and build them skywards

Take the pieces and build them skywards
and
Take the pieces and build them skywards
and
Take the pieces and build them up to the sky.

2009-05-08T14:49:00.003Z

Hello this Emma again.

I just wanted you to know how grateful myself and the rest of Kates family are for all your kind words and support at this time. Your comments, messages, charity run and tibutes are an amazing comfort to us and such a display of love for Kate.

Thank you to all who attended the funeral yesterday and all those who couldn't make it but thoughts were with us.

I am sorry if i did not personally greet you and we have spoken on here or facebook. I am sorry I do get shy around new people and I truly do appreciate you.

I was overcome with emotion on several occasions by your tributes and kinds words.
I am sorry that my own personal tribute to Kate was a little hard on hearing.
I was asked by many of you to post it on here so here you go...

This is the poem I wrote for Kate...

Little Feet and Big Woods

Little feet marching on the fallen leaves
Crunching branches as they carefully weave
“Why are all the trees so tall?” little feet cried
Big feet stopped smiled and sighed
“Because they all want to reach the sky”
“But why Big feet tell me why?”

Little feet jumping from rock to rock
Hiking along the unsteady blocks
“Why do the mountains stretch up so high?”
Big feet stopped smiled and sighed
“Because they want to reach the sky”
“But why Big feet tell me why?”

Little feet splashing in the puddles
Getting into a lot of muddles
“Why does the water shine so
Tell me big feet I want to know”
“Because it looks up to the sky”
“But why Big feet tell me why”

Little feet ran through the long grass
But stopped when they saw no path
“Big feet I cannot see the way”
Big feet took little feet’s hand and began to say
“A way can be found in the sky”
“But tell me Big feet tell me why”

Little feet stopped to see the view
Looked out in to the vast blue
“What is that shinning in the sky?”
Big feet held Little feet and sighed
“One day Little feet I will be gone
And all in life will feel so wrong
But Little feet do not despair
For in the sky I will be there
Like the shining lights around
My love for you can always be found
Do you see why the mountains reach so high?
And why the trees will always try?
The sun keeps the world alive
The flowers and the animals thrive
Just like the light you see in the sky
Love is light and this is why
We shall never be apart
For in every light from sun to stars
Light forever strong and true
Just like the love from me to you
For I will love you for eternity
And everyday in between
Now let us walk in the woods Little feet
And see all the beauty in the trees”

© Copywrite Emma Everingham

Thank you for reading it.

Thank you for everything.

Emma aka Mags

xxx

2009-04-23T11:05:00.003Z

Hello, my name is Emma. I have been writing on here as Mags for my Aunty Kate (Poodle as I call her on here).
I am so very sorry to inform you that Kate passed away yesterday (Wednesday 22nd April) at around 3 30pm.
She had her mum and her husband by her side when she passed away peacefully. It is the only comfort I have to give.

She was amazing and I am so proud of her as I know all who knew her will agree.
I miss her more then I ever fathomed possible and this is a great sadness on anyone who knew her.

Leave comments if you wish I will publish them for you and they will be up on here online.

If you need to know funeral dates and times leave a comment on here with contact details and I will contact you.

I am also very sorry if you personally knew her and we have not found a way to contact you more personally sooner then on here.

Thank you so much for all your support and well wishes and for reading such an amazing person's blog.

Thank you

xxx

2009-04-16T20:58:00.003Z

Please Continue to Support Alan -

Alan - You are Countess Mountbatten's House second highest fundraiser. Well done mate - so grateful. Please continue to support Alan at the London Marathon.
The link is http://www.justgiving.com/alanmiddlebrook so no excuses!!
Had nice day. My friend from Oxford came to see me so that was good. Shocking that I'd last seen her about a month ago and hadn't realised it was that long ago.
Tired now so will try to update tomorrow.

2009-04-15T21:46:00.005Z

Tuesday 14th April 2009
This was a strange day. I saw the consultant and we sorted out my medication since I refused to have any more of those patch behind the ear things that had made me so vague and confused. I know it helped with the cramping pains but it gave me too many side effects to continue.
I spent the morning doing some scrapbooking and writing in Pete's photo albums so I enjoyed that.
My sister came over to see me with her 2 youngest and with my mum having our 3, they all booked into the travelodge across the road from here. I know it sounds very strange to 'waste' money on this but originally, they were all going down to Folkestone at tuesday lunchtime and come back on thursday. Talking it over with mum and sis, the solution seemed to be having a holiday at home - very fashionable this year so the news keeps telling me!!! It seemed too much driving around for the adults plus petrol costs and the potential for arguing children to have in the car with Grandma seemed a bit much. This way, it seemed like they were having a 'holiday' and I could see them everyday!!
My sister, Grandma and 5 children went to Lee-On-The-Solent for ice creams and the children ran around on the beach for the afternoon and the 2 adults sat and chatted.
Pete and I sorted a few bits out in my room and then he took me out in the wheelchair around the garden. The volunteers had planted out loads more pansies, primulas and even some petunia. I do love the garden - some of it reminds me of my home now and other plants remind me of either when I was growing up in London or my Nan's London house. There are tulips, daffodils, ribes, kerria, primula, pansies, forget-me-not, camellia, pirus, and rosemary.
When we came back from our excusion outside, I was in quite a bit of pain on my right side so had some pain relief medicine. This time, it didn't work and my pain got worse. Then my breathing got worse and I felt horribly sick. This was happening about 5pm. They gave me an injection of an anti-sickness drug but with little effect. I then became very cold, clammy and at the same time was hot and sweaty. My stomach became very bloated and I could feel it swelling. They tried with every drug they could - which is becoming shorter as I seem to be more sensitive to the side effects of everything!!! I looked down at my leg and was amazed to see what looked like an aftermath of a burn. The top layer of skin appeared to be missing and leaving behind a grey area. Everybody came to have a look. The doctor had to come down about 12 miles to see me and my leg, pain, swollen tummy etc.
It was really scary as I felt my heart was going to stop or I would stop breathing and the pain was so bad and they just couldn't get on top of the situation at all.
In the end, with more changes and Pete staying the night with me I calmed down enough to get some sleep.
When I woke up this morning, I felt better but was scared to move in case I set off any of the pain etc from last night. Well, I'm pleased to report that I didn't but it was so hard not to immediately panic. I've been out in the chair but haven't really pushed myself to do anything more than that.
My school friends from Kent came very briefly to see me, bringing me flowers and chocolates so they are welcome to come again!!! The French Trawlermen have yet again gone out on strike making it so difficult for us UK residents to use our own roads and have access to our own houses in Kent.
The rest of the day, I've spent mainly asleep which is frustrating as now it's midnight and I am getting tired and will have to get hubby to help me settle in bed as we have taken over the room with my clutter!!!
Do hope to see some of you next week /weekend as do get lonely but just need to organise myself and combine diaries etc first so I get a balance between rest, write and chat.
Thank you to everyone for all your messages.
I know most of you are more of a technophile than I am. Still trying to put link up for sponsorship of Alan who is doing the London Marathon in fancy dress for my hospice here even though he lives 200 miles away so support would be appreciated. Hoping the keywords to get you there are from a collection of the following : Alan Middlebrook - just for giving- facebook- kate trun - london marathon -2009
Hope you can find link page as 1 of my friends did set up a page from my facebook to link to justforgiving for this cause.
Too late now. Night night all

2009-04-13T18:50:00.004Z

Easter 2009

I've just re-read my entry for last week so that I know where to start today and am sorry have been so slow at updating.
It seemed a long time over Easter at the Hospice as so many things were shut down or not working and I didn't see a doctor over the weekend which seemed strange. There again, in the world of hospices, I think it is something you have to get used to as often your condition isn't always changing as much as it does when you are acutely ill in hospital. As I was 'stable,' I didn't need to clinically (medically) see anyone but if i did then I was sure I would be seen.
It is such a meaningless word 'stable'. It is the literary equivalent of 'nice'.
It was an extremely busy weekend for the staff here as there were so many ill people coming in and going out again.
Easter Sunday - I went home for the afternoon and the first part of the evening. The children had so many eggs, it was unbelievable. Laura had made me some little chocolate eggs which was sweet. They had all made me cards which were lovely and all had chicks as their theme. Pete bought me flowers so it was lovely having all these handmade gifts.

2009-04-09T20:27:00.003Z

Home again

Don't get too excited as I mean I went home for a few hours!!!
It's been a strange week as I feel as most of it has gone by in a drug induced sleepiness so have decided to stop one of the drugs which is supposed to help with the spasm pains and already feel better. I was getting double vision and being very vague. I couldn't get on with the things I'd planned and probably annoyed everyone with my vagueness. I'll have to see how it goes as obviously I don't want to be in pain.
Have had lots of visitors which has been good as I wasn't up to much else. Sometimes it was a case of 1 in and 1 out !!! So sorry hope people don't feel short changed.
I've been writing down in a diary when my visitors are coming to try to space things out and to ensure that I have some time to myself!!! Our friend who is doing the London marathon in fancy dress to raise money for this hospice and his partner came to see me. It was lovely to see them. I do hope that some of you are sponsoring him - there is a link page on my facebook so that helps. It would make me feel very guilty to know that he is going to this effort and then not getting sponsored.
On monday, my friend from Devon came to see me and we spent the morning sorting and cutting out photos for my sister's scrap album. It was great fun as I've now reached the stage of the 1980s so there are some very interesting photos of me in that era.
Pete and I managed to have some time together on tuesday to try to sort out things which was good. Even managed to get through to Working and Child Tax credits first time!! However, I was so befuddled that we couldn't get a lot done.
On wednesday, I went home for about 4 hours. It was great to see home again and managed to find some of the things I was looking for and it was good to see the children in a 'normal' environment. I found some photos that I wanted for my sister's album so was pleased about that.
Today, my mum and sister, her husband and youngest daughter came to see me. My sister could only spend the day here but mum is here for a while so that should help me. I felt quite vague at first when they arrived but eventually woke up and we made some thank you cards and did more to the albums. It was good to be doing this all together as it seemed a 'family' thing to do. We had a good laugh at remembering what we used to do when we went out for our walks when we were about 10 - 16 yrs old. I like reminiscing anyway, so it was fun. I expect my Uncle's ears were burning though as we were remembering what songs we used to sing when we went out for a walk with him and the sort of rough and tumble play we did with him.
My uncle has had his hip replaced about 6 weeks ago now and is still having trouble with his recovery so it means that I'm too ill to travel to him and he is unable to get to me which I find frustrating as I would like to have a good chat with him and giggle about the past. Hopefully, one of us will be able to get to see each other soon!!!
I enjoyed today as I felt more awake and was able to do things like my album and writing some of the things I want to write about and even use the laptop without squinting. I've recently got some bifocals and I don't think that helps my vision as my eyes can't adjust that quick.
I felt sorry for hubby as he spent a lot of the time with the children and not much time with me or my family. Thanks for looking after the children, Pete so I could spend time with my family. He left early as well to sort out the food. When it was time to say goodbye to my mum and sister, I got very tearful and didn't want to be alone so my sister stayed for a while until I calmed down. It seemed very strange as I think the drugs I was taking must have flattened my emotions as although I have been crying at times, this seemed to really hit me that I would be alone until I went to sleep. It's strange how sometimes I want to be alone and at other times I feel I need to have someone with me. Tonight was one that I didn't want to spend alone. However, after about an hour and some food to eat, I felt more confident to be on my own and have had a pleasant evening on the internet.
I seem to be getting stressed about eating now which doesn't help but I've had a couple of attacks of regurgitation which is not nice and of course, the more anxious I get, the more difficu;t it will be to eat. The consultant had suggested I try lorazepam before eating and I had done that on some days and was better so perhaps I'd better go down that route rather than those earpatch things which made me sleepy and confused.
It has been a hard and strange week as I felt so isolated in my confusion bubble. I am stronger in that I can walk much further and am more steady on my feet and don't need oxygen all the time now but just look very strange as I have my little stick arms and legs and then a huge tummy. Apparently, there is only a little fluid in my stomach which they are reluctant to drain as my clotting factors are wrong so could be in more trouble healthwise if they try to drain the fluid than leave it where it is.
Eating wise, I'm still not eating that much but I can manage more than last week and you'll be glad to know that I have had quite a few showers which have been quite blissful.
I think I'm 'stable' at the moment which is probably the best way to be, especially as now I can function better mentally and so can enjoy once again looking at the waterfall and the birdfeeders and can get on with my scrapbooking. Painwise, I'm now OK but looking back over my visitor diary, I know there have been some days this week when my pain wasn't being controlled properly as I can relate their visits to when I needed extra painkillers.
Thank you to everyone who has visited me and sorry that I've had to turn some people away - oh to be so popular!!! Also thanks to everyone who comments on facebook, emails, texts, the forums etc. It's good to know you are thinking of me.
What a difference a year makes!!! This time last year, my sister and her 2 youngest, mum, myself and the children were on the Isle of Wight. I really didn't think I would be here now even though I'm not well. I'm glad I kept this blog as I wouldn't have remembered that and it was a good holiday.

2009-04-04T19:54:00.003Z

Strange Saturday
I felt quite a lot better this morning apart from being very sleepy and it took not quite as much effort as the day before to have breakfast but nearly!!! Later on, I managed to walk to the toilet with my 2 wheeled zimmer frame - don't my mobility gadgets get more hi-spec each day!!! I even managed once dressed to go out into the garden with Pete, Heather and her 2 boys by walking with my zimmer frame so very pleased. Heather took some photos of Pete and I by the waterfall and you wouldn't think it was in the middle of a hospital let alone less than half a mile away from the motorway!!
Of course, now have totally wiped myself out and spent the afternoon asleep which was lovely. My stomach feels slightly less bloated as well but then I haven't really eaten. The medics know how little I'm eating as well so have to wait and see what they say about this on monday.
Tomorrow, mum is going home for a few days. Poor mum has been drifting between here, Pete's parents and our house so I'm sure she'll be pleased to stop moving around as well.
So what now? Do I hope to improve enough to have more chemo even though it means very poor immunity or do I let nature take its course? I'm beginning to feel like I could tolerate more chemo and I could try just the one and see what happens!!! Hopefully, it will shrink the ones in my tum as they are the ones that are causing me the huge amount of pain and stopping me from eating and drinking and is effecting the quality of my life.
Really hoping I can go home for a little while tomorrow - just to make sure it's all there and have some natural time at home with the family. Umm - who am I trying to trick? It means a day of arguing !!!

2009-04-03T21:09:00.005Z

Rollercoasting the Dippykate Way
Well it's now 2209hrs on friday 3rd April 2009 and so nearly a week since I last posted and am trying to think what I've been up to that could be of interest.
Mentally and emotionally, I'm in a better place so that's easier for everyone and physically, parts of me are in better ways and other parts of me are worse!! Thank you for all your comments and support and emails etc.
I feel very guilty asking so much of you on my last post and I'm sorry if I upset anyone - think I sound even more bossy than I usually am in that post!!
Well, how did I spend this last week??
I spent sunday morning asleep which helped me and I was beginning to need less oxygen and be off oxygen for longer but my stomach is really swollen and that is getting worse. In the afternoon, myself and my friend from Waterlooville went through the photo album for my sister and although she does not believe she is 'arty', you are 'my Waterlooville' friend. The way you have displayed the photos is much more arty and professional than I could manage!!
Monday - I was planning to go home for a few hours but in the end didn't as was quite tired. One of my friends from Folkestone came to see me and my sister arrived as well. My oxygen need was now down to about 3 litres/min of oxygen so was able to go home for a little while if i wanted to. Instead of going home, I went outside in the wheelchair with my sister and my hubby and had a good nose around the gardens which are lovely and there is so much colour in the beds. It was blissful to be outside.
I think it was today and not last week but saw the palliative care consultant who seemed to be very much pushing me to go home or at least that's how I felt and I didn't feel ready to go home on a full time basis. My sister and the nurses explained that he actually wasn't really pushing me into going home, he was just making plans. Anyway, from that consultation, he changed some of my medication which hopefully would help me with the terrible stomach cramps that I get. They took me off the morphine pump and started me eventually on the long acting morphine capsules and also gave me a sticky patch behind my ear which was to help with the stomach spasms and also help with the horrible sticky secretions in my chest. The drying up part worked too well and I ended up feeling like I had cottonwool stuck at the back of my nose so it was impossible to swallow. It was a very odd feeling but it did get better by the next day. Unfortunately, the same can not be said of the pain and bloating in my stomach. As soon as I started to eat or drink, my stomach would just go rock hard and look very swollen and become very painful to the extent that I needed morphine to get pain relief andf lorazepam to help me calm down as all I could do was to rock with pain.
Tuesday - this was quite a busy day with visitors but also the day I went home and managed to spend about 4 hours there which was great and we found all the things that had previously gone missing so I felt much happier. My sister had to go in the evening which was sad but she has her family to look after as well and I know she be back here soon.
After my trip home, I was so tired I just sort of flopped into bed and didn't move!! All I'd done was to get out of bed and into the wheelchair and into the car, into the wheelchair and into the lounge. You'd have thought I'd just attempted climbing up Everest judging by the state of me!!
It was lovely as I could now see the new kitchen decorating. It is wonderful and I hope you 2 are happy with the results as I am.
I must have got so excited about going home, I forgot that another friend was coming to visit so am really sorry that I was not there when you turned up.
On wednesday, a friend who I went to school with in Folkestone came over to see me which was lovely and also my friend from my student nurse days and her husband visited too. My mum had also arrived as well so it meant that I did have people around if I wanted them or could tell them to go away if I was overtired!!
Thursday - Decorating Debbie came to see me and gave me some lovely aromotherapy and reiki. She did the aromotherapy before lunch and I tried to eat lunch but it was a slow and painful business. Once I'd finished eating, Debbie gave me some reiki which was wonderful and I drifted off to sleep. I woke up in a panic though. I could feel someone lifting my head up and then stopping and running away. I woke up and realised I couldn't move. I'd half fallen out of bed and my face and head was in the drawer and my arms behind me and I didn't have the balance or co-ordination to move my head!!! My friend Lucy, had come to visit me and found me with my head slumped into the drawer and she had tried to pick me up but my heavy sleepy head was too much. I didn't realise she was there so was shouting help. The physio and Lucy came back and rescued my head which was all lined with pressure marks where I'd fallen asleep on top of recharger leads in the drawer!!! Who else could fall asleep and stay asleep in a drawer apart from Dippykate??!!
That leads me onto friday. I felt very sick during the night and ended up having some very strong anti-sickness injection at 7am which made me sleep so heavily again that the poor volunteer man had to try 4 times to wake me up so I drank my tea and had my breakfast!!
I spent quite a lot f the morning asleep after that but did have visitors and mum. this afternoon the children came up to see me. Poor Laura has a very bad cold so not sure about her visiting me which is a shame as I thought we'd be able to do something creative tomorrow. Hope she's better or maybe I can wear a mask this time as I want to be able to give her a cuddle.
I managed to have a shower which didn't leave me breathless and am now down to 3 litres through the nasal specs all the time now so pleased. Just my poor belly to sort out now. I'm hardly eating anything at all - just puddings and the odd soup and smoothie.
Will try to post in week. Thanks once again for your support.
Katexx

2009-03-28T10:45:00.003Z

Thoughts on Dying
Thanks to everyone who has contributed to my posts or written supportive posts about me and my current state of ill health.
I always thought I would know when the time was right for me to stop and give up treatment. In many ways that decision has been taken out of my hands now as I have been discharged from the oncology team to the palliative care team only. This happened when I was transferred to the Hospice on Tuesday 24th March.
The oncologist says that the only way I would get more chemo would be for me to be able to walk into the clinic and I'm far off that. I can manage a few steps on my own and that's it.
It was a horrible feeling leaving the hospital and knowing that I would never be 'well enough' to go in ever again as now that I’m at the Hospice, I’ve elected for ‘do not reuscitate’ so there is no reason unless I get quite an unrelated infection that I would ever need to go in either. Another, chapter of my life over.
Anyway, I have a lovely room with a view of a waterfall and bird boxes and just enough space for my clutter and things.
Psychologically, it's taking time to adjust to the new 'dying' me who is still aiming for home for a few hours on some days but has given up on thinking of being at home for a few days but you never know I might turn the corner and perk up for a while and get home!! It's very confusing all round.
I’m sort of balanced between wanting to get well enough to go home but to keep this bed mine while I’m at home. I don’t want to die at home but it would seem more appropriate there than at the hospital if I can’t get a bed here at the hospital.
I’m not sure what sort of death I would be facing and of course, still don’t. I don’t know if it will be quick or drawn out. I know at the moment I’m not ready to die and it’s hopefully, quite a few days/weeks off it anyway.
I seem to have done a brilliant job of tricking you into thinking I’m fantastically organised when in truth I’m not. Certain things are and others aren’t which is very frustrating and some things I can’t do until I get a few hours at home.
I took on too many projects and now with the kitchen redecoration going on at the same time it’s all happening at once!!!
It’s odd facing death as I’m so aware that often it is me that wants people to visit me, to keep me company, hold my hand, have a laugh with or look after me when I‘m feeling rough.
I enjoy having reiki and aromatherapy.
I want to personally say thank you to people who have spent so much of their time after nearly 4 years of ‘fighting the invader’ that not to say goodbye individually seems rude.
I know for many people it is hard emotionally to come to a hospice and see me going downhill but I’m the sort of person who needs some kind of closure so even if you can’t face coming in to see me then maybe could you send me an email or text as I would like to say a big thank you to you all individually. Emailing would be best as then I can make it clearer and more personal.
I really don’t want people to come and see me if they are going to be too upset and would prefer to remember me when we last did this or that together. That is fine. It has got to be what is best for you to do and not just because I asked.
It is now Saturday 28th March at 940am and have no visitors till later so want to make the most of this time catching up with my life story.
I will continue to update my blog/forums as much as I can or else my niece, Magnolia will, to you know what is happening. This maybe factual or it may be emotional posts - have to wait and see.
Thank you so much everyone for your help, friendship and support. I could never have achieved this much with out you.
Much Love Katex

2009-03-28T10:28:00.004Z

Off to the Hospice and Life in the Hospice

I got told tuesday 25th march morning after I had seen my oncology team that there was a bed for me at the hospice and the transport was ready from noon.

Mum helped me have a shower whilst the nurses sorted out everything else for me and then we finished the packing to go to the hospice. Pete also turned up to help get stuff out of my room so that all helped make me look less cluttered. I still needed 28% oxygen but could now stand and take a few steps n own so was definately stronger. The only other problem was this increasing pain in my tummy which would go rock hard and feel like a labour contraction but otherwise was beginning to eat a little better. Presuming this is the spread in my bowel layers. the doctors think it is too so that is disappointing as is causing me pain which was haven't having before and also scary for the speed my cancer grows at.

I got to the hospice about 4pm and got settled into a lovely but small side room with wonderful views of plants, bird boxes and a waterfall plus wifi access so quite happy.

I really felt that evening and the next morning, my care had gone round full circle. Now they were trying to get me rushed into going home mode and it seemed too quick.

The children came to see me tuesday and thursday evening so that seemed more normal and they are happier here as they can play with the toys or watch telly.
Let's see what happens next

2009-03-25T21:59:00.004Z

Off to the Hospice

I just have to hope I get the next bit in the right order as one day just went into another!!!

As the week went on, I began to get a bit stronger so that I could have a conversation with people and not drop off to sleep or nod off when texting people!!! (unlike now!!!)

As the week went on, it was decided that my visitors did not need to wear plastic outfits to be with me and although my swabs still came back as positive to paraflu, I did not have a high temperature or other signs of major infection so my name could go on the waiting list for the hospice. This must have been on about the thursday before Mother's Day. It was such a relief to know I was making progress and the hospital did as well.

I had begun to make some physical progress as could now stand on own for a matter of seconds. My progress seemed more due to my determination than by medical intervention. Sameold story so far isn't it?!!

Frightened by how much weight I've lost and yet nobody is interested. I've got no arm or leg muscle now, nobody is checking up on me to see if I'm eating or drinking anything and my pressure areas could have completely broken down but nobody would know. The physios appear to have stopped visiting as has the palliative care team. The only person I do see is the junior doctor for my oncolocy team. Ben is lovely and says he keeps hoping a bed will come up quickly for me and that I do manage to get a few days at home with my family. With Mother's Day fast approaching, the need to see my home seemed more urgent. I want to see my house one more time.

The use of the hospital grounds here is amazing. They are using every spare area outside to build new buildings and inside is a mini shopping area with a florist and gift shop, WHSmiths, a clothes shop, Julian Graves -health food shop, League of Friends. a Solicitor - the sort of one that says have you been involved in an accident in the last 5 years and a jeweller. That jeweller did quite well out of me the week leading up to Mother's Day as did WHSmiths for birthday presents, cards and Mother's day cards. My sister kept going down there to buy pressieson my behalf as I needed to get birthday presents and a mother's day present. This tested our ability to be able to draw and interpret pictures of ear-rings etc!!! We got there in the end and I hope people were happy with their presents.

The building works were not so good for me or anyone else in the hospital. I had scaffolding outside my room and workmen who would be running up and down or else knocking down plaster outside my bedroom door so would be pleased to go to hospice.
Mother's Day was a bit surreal. I saw my mum who had spent the night with me again which was lovely and she'd found the church sunday morniung so was pleawed that she enjoyed the service and met other chaplains there.
My children came in the afternoon with 3 little boxes they had made themselves full of sweets so felt very proud of their achievements as they are lovely and go well with the much admired tissue flowers that Laura had made for me in the hospital. It was so lovely to be able to cuddle and kiss them without all these horrible layers of plastic on and we were all so much more relieved to be able to be like that.
Poor Woody looks especially tired and says how much he misses me. I think Laura and AJ are sleeping better as they look better and Pete looks tired.
My mum liked her mother's day things that my sister had bought her and the earrings that I had bought her via my sister!!! So that was all successful. They didn't spend long with me but it is so difficult at the hospital to entertain the children. Really hope can get to the hospice soon

2009-03-25T20:52:00.004Z

Para Flu Type 3
As the ward I was on, was mainly for patients receiving chemotherapy or people suffering from infections as they had no or little immunity, you can understand why they wanted me isolated. For many of these people getting a simple cold could kill them and although paraflu sounds a very ‘glamorous’ name, it is basically a cold which gives flu like symptoms. What was worrying me was that I’d caught this paraflu from another patient or their visitor as I’d been nowhere else. I know when I had first arrived, the woman opposite me had visitors with hacking coughs. You’d have thought that people would realise not to come in with colds and coughs to a ward where patients have lowered immunity but some people have no common sense.
This meant that all my visitors and nurses etc had to wear gloves, masks and big plastic, long sleeved aprons. The masks came in 2 sorts. 1 sort of looked like a general dust filtering mask but the other one looked like a duck’s beak as it was white on one side and yellow on the other and pointed forward. Everybody disagreed on which was the most comfortable or uncomfortable to wear. After a few days, the infection control team decided that my visitors did not need to dress up in the infection control paraphernalia as they were not going to see other patients but the nurses still did. My family were so relieved as they got so hot in all this plastic.
Death News
I really felt I was going downhill fast. By Thursday evening, I was very weak and could barely stand. The furthest I could walk was a few steps and I needed help with everything and still needed 60% oxygen to keep me going. Infact, whenever I did anything, my oxygen saturations would drop and sometimes drop to only 85% when they should be close on 100%. At these times, I would also be unable to catch my breath and get into a panic quite easily. I seemed to need oromorph and lorazepam more frequently to relax me so that my breathing was easier. The ward was so busy, it could take 20 - 40 minutes for them to answer the buzzer so this weekend 14/15th either my sister, mum or Pete slept in the same room as me. The nurses kept promising my family a bed or at least a recliner chair for them to sleep in but this didn’t happen. My 73yr old mum was sleeping on towels on the floor and my hubby and sister made do with sleeping on an upright chair with their legs supported by another chair. It seemed hopeless and I kept meaning to complain but never got round to it. In the end, hubby bought in the sun chair recliner so that whoever slept in with me was a bit more comfy which was a relief to me.
On Saturday 14th March, hubby and I saw the Registrar. He talked to us in a way that made it clear that I was not expected to live for much longer as my lymphangitis was spreading quickly and widely and that there was not much more they could do for me.
It was not the news we were hoping for as we felt, there could be room for me to improve so that I could restart chemo. However, we discussed this with the doctor who felt the children should know as soon as possible.
We told them on the Sunday and has been the most horrible thing I’ve ever done. AJ could not cry. He hugged me and said he loved me and was glad I’d lived for as long as I could and he didn’t understand why he couldn’t cry. Laura was distraught and poor Woody sat there with tears streaming down his face despite Pete cuddling him. It was a horrible day. What made it worse was that it was all done with the layers of plastic protection so we couldn't have a proper cuddle. It felt so wrong that our last goodbyes could be done through masks and plastic for basically a 'cold' virus. Eventually, we just changed subjects and went back to more 'normal' things like the nintendoes. They have been the saving grace and the cause of the most arguments in my existence I think!!
I love my Nintendo DSLite but I am very limited to what games I play - Braintraining, Scrabble, The Puzzler and 42 Classic Games where I play Darts, Billiards, Bowling, Solitaire, Chinese Chequers and Mahjong Solitaire which is my current favourite but does nothing for my eyesight and often fall asleep with my head over my nintendo and dread losing my stylus!!!!
From that point on until today 23rd March, I’ve never been alone as I’ve felt too poorly to be on my own and wait for 30 minutes for my nurse call bell to be answered.
I’ve had my family looking after me, washing me, taking me to the toilet and sorting out my pillows and bed. They have fed me which is difficult as I could only take a small mouthful and then need my oxygen back on.
I’ve been visited by lots of friends too who have volunteered their services which has been well appreciated and I've clung onto people's hands endlessly as I was too scared to be alone and holding hands helped me.
It's been so emotional as I never know whether I will see some of these people again and seen friends cry who in the many years I've known them and despite them having been through many life events I had never seen cry. It has been so difficult as I want people there but at the same time feeling a nuisance especially as all I wanted them to do was to hold my hand or pass me a little to drink and just 'be' with me.
It's been lovely having reiki and reflexology and managing to still go into zones that I've never been into before and these have given me much needed and relaxed non-medicated sleep. It has helped me further believe there is more to this life and that there is another life after this as I feel I see glimpses of it when I am fully relaxed and in theses 'zones' and it gives me strength in my belief of my own form of christianity. I have met up with various chaplains from the hospital who are from all sorts of christian backgrounds who have been wonderfully supportive as well.
Facing death has been challenging in all sorts of ways and for some reason trying to fathom out if there is a life after death has been one that has stretched my intellect beyond what I would have thought was reasonable!!!!
As this was all going on in my head, my body was doing it's usual thing of tricking the medics and beginning to get better again.

2009-03-17T09:37:00.002Z

Hello this is Mags again (Poodles) Kate's neice. I visited her in hospital sunday till monday and when she was having an hour or so with no talkin or exhausting herself she managed to type up a blog for you all. Feel privellged!!!!

So here from Poodle is a blog...

As many as you know, I’ve had a very poorly couple of weeks. I started this with a simple chest infection caused by one of the usual suspects – the strep one this time and came into hospital on Sunday 1st March. My Ct results were awful as I’ve written previously. I came out of hospital on Tuesday 10th after having the heart echo eventually having been forgotten about the day before with the plan being to start vineralbine on Thursday 12th.
I had a sore throat that evening which was annoying but didn’t think much of it. However, when I woke up on the Wednesday, I felt awful. I really felt like I had flu and my breathing was terrible. I felt I was drowning and felt so poorly that the only way I could get out of the house was by ambulance. We had phoned the chemo helpline and was told by the doctor I needed to be in hospital since I sounded so poorly. We packed first as I knew an ambulance would come quickly once called. I was right – the paramedics came within about 5 mins and with them giving me 60% oxygen, it steadied me a bit and brought my oxygen saturations up and calmed my headache and feeling sick.
The ambulance journey was horrible. They are so bumpy and I developed a lot of right kidney pain on the way to hospital that I was crying with pain. When we got to the casualty department, it was a bit of a race between us and 2 other crews who would get in through the doors first. I never watch ‘casualty’ on telly – do they have scenes like that on it?? I lost the race and came in last!!! I must have waited about 20 minutes for a cubicle and in all this time the pain was building up in my right kidney area. Eventually, I got to the front of the queue and was sent through to ‘major’ trauma where I had some oromorph. I got seen quite quickly by a doctor who put in a venflon – the tube thing they stick in your arm for giving fluids through. I was quite impressed by that as my veins are awful due to having had so much chemo. I saw my junior doctor I saw on the ward and he had to take blood gases from my artery in my wrist. I’d had this done on the ward last week and it had really hurt. This time Ben was brilliant and he didn’t really hurt me at all even as though he had to do them twice as the machine played up the first time. My chest xray looked worse than last week so they started me on antibiotics through the venflon. They wouldn’t use my long line as none of them had been trained to do it so as by this stage I was feeling better, I did my own blood tests and cultures!!!
After 7 hours, I was eventually sent to the ward and back to the same bed I’d left 24 hrs earlier!!!
I felt worse on Thursday but the doctors were hopeful that I could start the chemo on Monday as last time in November I’d been like that. However, I just got worse with increasing shortness of breath and generally feeling very unwell. It then started to be quite suspicious on my 6 bedded ward. They started to strip the beds which the other 3 patients had left but left the bed linen on the beds. Then one of the nurses came up to me and said they would have to move me into a single room and into isolation as I had para – flu, type 3 which was extremely dangerous to patients with low immunity. This all seemed very odd when you consider that I’d never had this flu before and that my immunity figures were actually quite high. The 3 other women left behind were going to have to be kept in isolation in case they got this bug off me so I felt very guilty but there again, someone from this ward had given it to me!!!
I just went downhill so rapidly over the weekend that on Sunday, we were told to expect the worst so said goodbyes to many people which was horrible. However today, am now in limbo land. Still requiring 60% oxygen to get liveable concentrations in my blood but managing to clear my chest a little by coughing and huffing and puffing so have talked things over with palliative care team and hope to get into hospice as long as they will accept me due to this flu bug but they are all saying I may get over this flu bug and then see what happens if am well enough to have chemo or whether I have now met the end.
Thanks to everybody for reading this and for your support and comments on facebook, and the breast cancer forums I write in. It does help to know so many of you care about me when most of you have never even met me.
Let’s hope I do get some sort of reprieve now and can yet again rewrite their chemo history books.

2009-03-13T20:20:00.002Z

Hello, This is Mags again, Poodles (Kates) niece. Just to let everyone know she is back in hospital again and things aren't looking good. She feels very Fluey and her breathing is difficult and feels exhausted. She is waiting on a chest X-Ray then will have a chest drain or have fluid taken off in a needle. She has been diagnosed with Para Flu type 3...(whatever that means) and is meant to be very contagious so no idea how she got it!!! Her spread has gained momentum in the period since her last scan and shows more tumours around her body, I will write more on her gobby gang account if I can access it OR on teh breast cancer forum tomorrow with a better update. She would love any phone calls so feel free to call her.

She misses you all very much, Lets all hope she gets better. Please send your love and support to her...

Thank you so much for all the support you;ve already shown her,,,, you have all helped her get so far with her fight.

Love Mags

xxx

2009-03-08T15:04:00.003Z

Sunday 1st March - Back to Hospital
I felt OK in the morning and took Laura into town to buy some more trainers - expensive this puberty and growing lark!! - and also a couple of T shirts as she had grown out of her previous ones. I felt quite energetic and not like last night at all.
After lunch, I supervised the children making bread rolls. The twins had made some wonderful bread rolls at their 'cuckoo' (cookery) club but it was AJ's first attempt at bread making. The instant yeast is even more 'instant' than I remember as you just add it straight to the mixture!!! Woody taught AJ how to knead the mixture and they all enjoyed making the bread into interesting shapes!! We then left the mixture to rise and I had a sleep and the others went swimming. Unfortunately, I think I left it too long for rising but we wanted to show AJ the 'magic' of yeast. We cooked the rolls and although Laura's were fine both the boys had made their mixture a bit wet so the bread was a bit flat but they thought it was great.
I then started to make sausage casserole and suddenly felt really poorly and in need of oxygen and a sit down.
Unfortunately, as Pete and clive had been redecorating and i hadn't needed the oxygen for so long, my condenser was in parts and my emergency oxygen was stuck right at the back!!! Eventually, I was settled with my oxygen and sitting down and feeling a little better but not great and knew my chest infection had returned. The problem was I really wanted to spend the night at home and I had the CT booked for tomorrow and the transport was coming around 730am so I thought if I could hang on till then I could stay at home.
Pete's casserole was wonderful but I really didn't feel well enough to eat much so went to bed and packed a bag ready for hospital and then settled down to watch Dancing On Ice with various children as they were taking their turns in having a bath. (In case you're concerned they did have clean water each!!!).
About 930pm - after the Dancing on Ice Skate off ( you can see I get my priorities right!!) and as I was feeling quite fluey as well, I started to panic. I didn't want to be as ill as I had been in november at home and knew I wouldn't make it this time if I wasn't in hospital. It is really important to me that I don't die at home so really the safest thing to do was to go to hospital. It was now after 10pm so thanks Matt for babysitting while Pete took me into hospital.
We must have had the worst wheelchair ever for going in a straight line and then I had the same bed that I had in November when my breathing collapsed so this didn't feel good. I was seen by some locum registrar who didn't seem that impressed by my chest xray so just gave me oral antibiotics. She made several attempts at taking my blood gases without oxygen which was extremely painful as they have to take blood from an artery on the inside of the wrist. I ended up with a 8cm bruise!!! My blood saturations without oxygen was 82% and even with 3 litres was only 94% but rather worryingly my heart rate was about 130. My heart rate had been this high before when I had had a lot of ventolin but the last time I'd had this was about 2 hours ago.
I slept reasonably and 4 room mates were quiet and asleep but the 5th was rather confused and kept asking me for scissors to cut her drip off but eventually I must have dropped off.
Monday morning I had my CT scan as arranged and did feel quite breathless laying flat despite the oxygen and everytime they asked me to take a deep breath I just couldn't expand my lungs at all. I really wasn't expecting good results from the scan at all.
That evening the children came to see me for a while which was good.
The junior doctor came to see me and said he wouldn't tell me the results of the scan and the registrar would but then proceeded to tell me that the fluid round my heart ahd increased and that my lungs were a lot worse than previously. That was not the sort of news you want to hear just before you go to bed!!
If you remember my last stay in this ward I told you about the toilets not locking and the wet rooms (posh word for shower room) where the drain and floor had been laid the wrong way and the windows not shutting properly, well not much had changed. Some of the toilets now locked but one had a notice saying that the lock had been reported broken on 7th February!!!! The windows now closed but on one windy night, the blinds still moved and you could hear the wind and feel the draught.
Tuesday - I went for an echo to see about the fluid around my heart. The operators were really good and explained what was going on and got a cardiologist to come and talk to me. She explained there was now about 2 -3 cm of fluid around my heart and although my blood pressure was on the low side, my heart function was not too bad but the fluid should be drained.
A few hours later, when my consultant came to see me, she said that they were now not going to drain the fluid as the fluid was quite thick and had strands of protein and blood in and so would block the needle if they tried to drain it. Really there is nothing they can do but hope that the chemo will reduce the inflammation and hopefully the fluid around my heart as it is the cancer that is causing the fluid build up.
The rest of my CT scan showed not much to cheer about either. There is a new solid tumour at the top of my left lung, the lymphangitis is worse so more soggy tissue in my lungs, the solid tumour around my oesophagus was bigger which we knew as my swallowing was so much worse and now I had fluid in the layers between my lungs and the outside (pleura). These are small and too small to drain at present but adding to my breathlessness.
In my liver, the small existing one at sector 5 is about the same size and the one that grew through my common bile duct in the summer has grown and there is a new one of about 2cm in another area of my liver.
There are also cancer deposits in the tissue layer between the bowels (peritoneal) and new soft tissue ones at the bottom of my sternum and near my stomach so all in all rather a depressing result.
Due to my infection, I couldn't start the new chemo this week and will have to hope that next week I am well enough to start chemo.
The plan was to have another heart echo on monday and see if the fluid is changing and if it needs draining.
All week, I spent just falling asleep at the drop of a hat. One day, it took me an hour to send a short text as I just kept falling asleep the minute I started to read or write. I really needed help help showering as I had absolutely no energy at all and felt so weak. I still needed oxygen but could get it down to 2 litres a minute and eveentually manage some time without oxygen but after a few minutes my saturations would drop to below 90% so looks like I'm on permanent oxygen till the chemo hopefully improves things. I will also be back on pureed foods unless the chemo works as well.
I came home friday afternoon and since being at home, I have managed to be without oxygen for soem of the time but my swallowing is getting worse by the day at a frightening speed and have started regurgitating again. The pain in my chest and back has increased due to the pressure of the tumour and I will have to ask for something different to numb the pain when eating. I had something at the hospice in July but can't remember what it was called but it did help.
I'm going back into hospital sunday evening so that I have a bed for monday incase they need to drain my heart but also so that I have somewhere comfortable to wait as they can not give me a time when they are going to do the echo. My back is so painful at present that I need to lie down or sit so that my back is well supported.
Mum is here and has been busy helping me try to tidy my corner of the bedroom and also to give Pete some more drawer space for his clothes etc.
The twins did their nighthike friday night and were so tired on saturday as they had no sleep friday night apart from about 3 hours and so missed their triathlon practice. On sunday, they all went swimming and did their homework apart from AJ. He has got an inset day tomorrow so will have to nag him then.
Thank you so much for all your kind words and messages.
I will post again when I know what is happening or if I can't get a message up here, I will try to get something on facebook or the forums.

2009-03-07T22:55:00.003Z

Last Taxol
Thursday was my chemo day. I knew it would be my last taxol as it really wasn't working very well now on my swallowing and my lump and skin secondary were growing. It was just important to get the CT done before I changed chemos. I also had my herceptin which went without incident but a bit long winded as usually I have the herceptin after the ranitidine and dexamethasone and this time I had it after the taxol. I couldn't sleep as all the pumps kept alarming.
In the evening, I went out with my wonderful childminder and our joint friends to our favourite indian restaurant. It was a really lovely evening and the food there is wonderful. I was so full though I just couldn't get to sleep till very late. I expect it was a mixture between the steroids for the chemo and just being overfull.
I was surprised at not being able to sleep as recently I have been so tired and feel quite different to how I used to feel. I just feel I'm going downhill now.
Friday turned out to be quite busy. I had to be up by 9am as the occupational therapist was coming to measure up where the grab handles were going for me to hold onto when I have a shower. I then had my belated birthday treat of a facial and reflexology which was lovely and relaxing.
My friend, Penny then came down from Derbyshire and stayed for a couple of hours whilst her daughter's fiance was entertained by Peter and they seemed to spend a lot of time looking under cars!!! It was good to see her again and we reminisced about our student nursing days and laughing at our clothes etc. I'm still amazed by how much brown there was in my room for 1981 - 82. I still think, as I said before, that the 80s were red,black and white.
At lunchtime, my daughter's friend mum came to see me which was lovely as we hadn't had a chance to catch up and have a good chinwag for ages.
I sort of had a rest in the afternoon, you'd be pleased to know.
Saturday - I took Laura out early in the morning to Tescos and spent about 2 hours there as she was trying on clothes as well as doing food shopping and having breakfast there. I also collected the mobile phones I'd ordered after Woody had left his in his trousers and it went through the washing machine!!! I really felt I'd overdone it and had to have a sit down while the assistants helped Laura unpack and pack the shopping. They were very helpful but I refused their offer of a first aider as I felt I would never get home otherwise.
My friend that I'd met via one of the forums came over to see me. We were supposed to be going to meet some others but i felt so tired that I really didn't want to drive over to the rendezvous so we just stayed in and chatted.
Pete took the twins off to triathlon training - this time it was cycling and swimming.
We then had a surprise visit from our friends near Winchester. He has been busy helping Pete doing the decorating - actually, I probably should say Pete has been helping him with the decorating. They came over unannounced but with the intention of helping to sort out the kitchen and do some housework.
I was so grateful that between the 3 of them they managed to clean and sort out the kitchen, the bathroom and hoover and do general housework in the house. It felt so much better to have a clean and tidier house and I am so grateful that those 3 worked so hard in tidying our house up.
At just before 4pm, Pete hadn't returned so our friend drove AJ and myself up to the community college where the swimming was and where AJ was going to try judo for the first time. AJ was excited about it and did seem to enjoy it. We met Pete whilst we were up there so he could bring all the children home.
I was thoroughly exhausted by this time and just went to sleep for a while until it was our meal. Most saturdays we try to all watch the same telly programmes and just have a bit of 'family'time. At present, we usually watch 'you've been framed' and 'Harry Hill's tv burp' and some of the celebrity dancing for red nose day and ' Ant and Dec's Takeaway'.
I just stayed in bed and hoped I would feel better in the morning and less tired.

2009-03-07T12:41:00.003Z

Meeting New People

On wed 25th february, I went to Bristol to meet up with 7 others who also had secondary breast cancer. I don't think anyone looking at us would have thought that we were a bunch of quite ill women. We all had a good laugh and swapped addresses etc. It is always strange when you meet people for the first time when you've been communicating with them via the internet as I always have formed a mental picture of them and it's interesting to see if you've got it right.
Anyway, hopefully, we'll all keep in contact and will meet up again as well as meeting others who couldn't make it this time.
I got back in time for Pete to take the twins out to the new triathlon club where they were swimming and running tonight so I could spend a lovely evening in with AJ on his own.

2009-02-23T18:24:00.002Z

New CT Scan Date
Well something has happened at the hospital to speed up my CT date as I got a phone call this morning to say that my appointment has been forward to monday 2nd March. Am really pleased as last night found quite a few new lumps in the centre of my chest so am now scared and didn't sleep much last night. Think it will be my last taxol this thursday as will get the results of the scan on 5th march and sure will get changed onto vineralbine. Hopefully, they won't give up on me now and withdraw all treatment - I've come so far so want to give the last option of chemo chance. Just scared the scan will show something really nasty and that they will deem me untreatable.

2009-02-20T23:59:00.008Z

Another Gobby Gang Funeral

I was not really looking forward to today. Our friend who was only just 32 died just over a week ago and it was her crematorium service today, friday 20th February. I met 2 of the other members on the way up to Birmingham and we all managed to sit together and in usual GG manner managed to drink our way through a bottle of Aussie Red in respect to the first member who died 21 months ago now. We got a local train to the station nearest to the Crem but I hadn't really realised how big Birmingham was!! I'd forgotten after London it is Britain's second largest city. We then found a local pub for some lunch and had more red wine before getting into a taxi to take us to the crem. It took about 20 mins or longer to get there as the traffic was so heavy and so we were at the back of the queue which was a relief.
It was a lovely service with lovely music and the chapel was so full that a lot of people ended up standing. I cried near enough all the way through and clung desparately onot my friend's hand and am crying now but wondered at times if I was actually crying about my life and that it will be my funeral next. It made me wonder how the children will cope and my family and friends. It felt so selfish of me to think like that. Of course, I was upset over losing my friend and devastated for her family and friends and wondering how they were coping but I felt I was not only mourning her life but of other people's like my Dad, Nan and those of close friends that I have lost to breast cancer like Moira, Sandra, Dee, Jackie, Jan and Steph and all the others who I might never have actually met or only met a few times but knew from the breast cancer community forums. These named women with the exception of Sandra who was the same age age as me were all under 40. What a cruel disease this is. What a waste of young lives. When will they ever find a cure or even something that is less barbaric than chemo that just targets the cancer cells? It will come one day, I'm sure but too late to save me and 10s of 1000s of women who get breast cancer. The way that I have survived for nearly 4 years now is testimony to the advancement of chemo treatments, radiotherapy and targetted treatments like herceptin and the treatment of secondary bone spread. I am hormone negative so all those hormonal drugs are not relevant to me but of course, have helped prolong and save lives of countless other women. (I'm aware that men get breast cancer too especially the genetic linked one but I don't want to get into the debate about that one - sorry - hope I haven't offended anyone especially as I know there are people who read this blog that have lost male relatives to the genetic linked breast cancer.)
Anyway, the service was lovely and had been designed by my friend. There was a lot of beautiful and apt music and some wonderful tributes from friends and family. The really heart wrenching part was a letter written by her and read in the same style that she always spoke in so you could 'hear' her say the contents. It was a beautiful letter full of wit and the feisty nature that she always showed and with the quick wit and intelligence that she possessed. It was very moving.
We needed to get a taxi from the crem to the Wake as it was about 4 miles away. I got a lift from one of her school friend's but the other 4 got a taxi. the taxi driver did not know where the Hall was and refused to turn the meter off after they realised they had been left in a derelict building's car park as he said he did not know where the correct place was!!! Eventually, he drove them a little further down the road and got very angry with them and so they got out and phoned me to get directions to the correct place which was probably only about a 5 minute walk away.
It was such an honour to meet her friend's and family at the Wake and they were so brave and so welcoming to us. We did appreciate it.
The journey back from the Hall to the local train station and then onto the main train station went without a hitch.
3 of us were on one train whilst the other 2 had a longer journey back to London and beyond. One of the girls in my group, went and got another bottle of wine but it wasn't till we were on the train that we realised she'd been sold a corked bottle and not a screw cap. A female student came to our rescue with a corkscrew from her rucksack!!! We all said goodbye to each other along the way as I had the furthest to go and it felt quite odd to be on my own again for the last 45 minutes.
I got into hubby's car at just before 10pm so had been travelling or out for 12 hours. I was not so physically tired as I thought I would be but it was very emotionally draining.
It has made me rethink what I was planning for my Thanksgiving Service so I will relook at that which is probably a good thing.
I would like to thank everyone who supported me through the day and looked after me.
For my friend - I believe you are in a much better place now and am so glad and honoured that you became my friend even if it was in such awful circumstances. You were brave and feisty and taught me a lot about looking at life differently even though I was 15 years older than you - approximately a third of your short life. It was such an honour to meet your family and friends and do really send them my sincere condolences.
Today, in Sainsburys, I heard a different version of 'Time of Your Life' - you had the Green Day version. It was an inspired choice of music to choose as were the other tracks but then we knew you would choose the correct music for the event as that was one of your areas of expertise. I will miss your witty and moving posts on the forums and miss meeting up with you and listening to what your latest adventure was.
You are a very hard act to follow and I, like everyone else will miss you so much but it has been an honour to be your friend.

2009-02-20T02:46:00.002Z

The transport turned up at 8am. It takes under 30 mins to get to hospital at half term so wasn't expecting him and hour and a half early so was dressed and had the ol slap on - getting better at the eyebrow painting but had no breakfast or cup of tea. had to buy breakfast at the hospital - really horrible lumpy porridge!!!
Got my recliner and then was told the Registrar would be a little late as was at meeting but in fact my appt was at 930am and she was with me by 945am so not bad at all. Found out that she wants to take lead in my care at present. Was puzzled and then remembered she'd asked my permission if she could use me as her case study for work she is doing with GPs and other medics about living with secondary bc and that it does not necessarily mean that a woman will be dead within a few months when diagnosed with secondaries Remembered when I first had skin mets in Nov 05, my GP told my hubby I'd be dead within 6 months.
I know in many ways I have been lucky in that my cancer responds to chemo but it just grows back very quickly the week i stop but I also know that many women do succumb very quickly to secondaries.She was happy togive me chemo despite my croaky voice due to a cold as it is not on my chest and I don't have a high temperature or anything. She examined my skin met and underlying lump and it has grown massively in 2 days. When hubby and I looked at it 2 days ago, it looked like a small insect bite about 0.5cm but today it is about 1.5cm across and is puckering - rather scary. My swallowing has improved a little so want to continue on that ground as so petrified of not being able to swallow again. Had an xray on my spine and will get result next week as she needs to get old notes to see if can have more rads to my spine. I think I have had the full dose allowable because of the rads i had June 08 that failed to shrink the solid lung one that squashes my oesophagus. When I was down there, I asked about my CT scan and was told it was booked on 10th Feb for 25th feb - the one date I didn't want as it is the BCC secondary meet in Bristol and desparate to go. I feel my emotional needs are just as important asmy physical needs so cancelled the CT and next appointment is not till 13th march so wouldn't get results till 19th march - 4 weeks time.
Have never had to wait this long before and if they'd sent it out last week I could have changed it then and not wait so long. Feeling I've done the wrong thing now as taking big risk. She has agreed in principle for me to have vineralbine so may have to swap to that before CT if my swallowing gets bad in next 4 weeks.
Good news was iron had gone up from 95 to 105 so think it is all the brocolli I've been eating!!!Will ring someone on monday to see if can be sped up as sure the 25th will be have been given to someone else now. Got my friend's funeral tomorrow so will be a long day and very hard emotionally so must go.

2009-02-18T23:06:00.004Z

Half Term - Feb 2009
We were supposed to have left at 8am according to Pete but did manage to leave by 840am so not bad and had good journey down to Folkestone. When we got there, I went food shopping with mum. Well that was the idea but ended up buying a black track suit as well!! I seem to spend so much of my time now blobbing around and I want comfortable clothes. I just couldn't imagine me in a bright pink or green tracksuit so stuck to boring black!! In the afternoon, Pete took the children down the beach where they had great fun throwing stones and trying to skim them on the water as it was such a calm day. I just sat with mum and went through some old photos and then had a sleep.
About 4pm, my best friend from secondary school for the first couple of years came round. I don't think we'd met since 1980 but my mum has always sent me cuttings from the local news as she was a beauty queen and then went on to organise the local carnivals and is now a part time actress and photographer. Hope I've got that right - please correct me if I've got it wrong - my chemo brain just gets muddled. It was brilliant to catch up. We became friends as we both loved The Osmonds and then I was very disloyal and kept swapping allegiances between The Bay City Rollers and The Osmonds!!! Oh wasn't life simple then when your only concern was when the next single came out. I was far more anxious about that than my homework!!! After that, we always remained good friends and were part of the same group in school but I had really bad Glandular Fever from the january that we were taking our A levels so never went back to school so missed out and actually sat my A levels at home with the headmistress in my lounge!!! I didn't do very well and never realised till much later that so many of our year went back to college to retake their A levels. I always have said I never wanted to be bitter about my past but that is about the only thing I do feel angry about as we had such poor teachers for our science and mathematics A levels and as far as I'm aware, everyone did really well at college. It would have simplified my life at that time if I'd retaken my Alevels and who knows what I would have done instead of spending 1 term at teacher college before starting nursing. My aim had been to do a Pharmacy degree so wonder if I would have done that if I'd got the A levels necessary or if I would have done something completely different. Actually, I'm not sure it was my aim to do a Pharmacy degree more of the schools ambition to get as many as possible of the 'Tech Girls' into university so as to compete with the Girls Grammer School and that was 1980 and school league tables weren't around then!!! Think I should write about my secondary school experiences one day as there were so many odd rules!!! It has only been in the recent 5 years that I have been able to wear brown and green without thinking I'm back at school!!
Anyway, through the wonders of technology, it is now easier for us to keep in contact which is good. Thanks for coming to see me and hope to see you again soon.
Sunday - another calm day and really just stayed in until after lunch when Pete took the kids swimming to the local pool where they had the floats out. Mum and I went food shopping and got a few bits and pieces so that Pete could repair things for mum. Umm and I also bought a short sleeved cotton top and a sort of tunic dress which is very flowery and elasticated over the bosum so looks a bit like a short tent - not sure if will keep it. The problem is sometimes I get so hot that I want to wear summer clothes now and other times I'm so cold I need multiple layers and wheat bags and throws to keep warm. Might try it on again tomorrow to wear over jeans as often hot in hospital and so strip off and then get cold during the actual chemo so have to put the layers back on!!!
After swimming, AJ's skin was really dry and itchy - they seem to use extra strong chlorine there and we'd forgotten to take anything with us for him so Pete ended up driving about 30 mile return trip to get some cream to calm his skin down. I'd forgotten about lack of facilities in Folkestone!!!
I was not going to get involved in cooking sunday lunch at all but with Pete out to get something to help AJ, I ended up doing a lot of it with mum. She's got a conventional oven so it involved a lot of bending down to put things in the low oven but it all turned out lovely in the end although I think the bought chocolate trifle was the highlight!!! We had eaten plenty of fruit for lunch so had made an attempt at eating healthily.
Monday - we all went to a Rare Breeds Farm to met up with 2 other girls from school - are we still girls at 47? Still feel like a girl rather than a woman or a lady!!! Anyway, one of them became my best friend a bit later on at school and we stayed in contact when she was at university and I was doing my nursing training and used to stay with each other in our student accomodation.
I lived in some terrible places including one place which was a ground floor flat shared between 4 of us. The landlord was the meanest person on earth and it was my first experience of sharing a flat and dealing with bills and landlords. The front room had been divided down the middle so the other 2 girls had those rooms which were narrow and I'm not sure what happened to how he divided the bay window up. I had my own room but really it was sharing as the landlord had divided the back room which led out to the garden across about half way back with an MDF wall which didn't reach the ceiling and had a doorway between our rooms covered by a curtain. There fore, I didn't have a window or any natural light in my room but I did have the most massive sideboard along one wall which he wouldn't take away. Both mine and lizzy's bed were supported by bricks rather then having legs!!! It meant of course, which ever of us was on an early would wake the other up as the light came in over the top of the wall and it made it difficult to have anyone to stay. The lounge area was really the hall and had chairs in it that he had repaired himself with pieces of string and rope so were uncomfortable to sit in. The bathroom and kitchen were at the back of the house and next to each other and we got flooded one day in a freak summer storm and the water came into the kitchen, bathroom and lounge and so the carpets stunk. He refused to buy a new carpet and gave us a bottle of shake n vac to get rid of the smell. The gas and electricity ran off coin meters which were in the cellar so you took your life in your hands each time you went down the rickety stairs which were more like a step ladder than stairs and very wobbly. I think we only spent about 3 months there before moving to another flat with another friend but that's another story!! I don't think my parents were too impressed by the flat either and were relieved when we moved out. I don't think that would be allowed now and Idon't know why we didn't ask environmental health to look as I'm sure it would have been condemned!!!
Not too sure how I got here from the Rare breeds farm but there you go.
I think it was because we spent a lot of time looking at old photos of us between the ages of 18 - 23 and we were discussing staying in each other's places. I had also come across some of the letters that I had written to my sister which described what we did and so much waffle it was ridiculous. I seemed to spend a lot of time with hangovers which I don't remember at all.
After we finished at the farm we went down to the beach so that the dogs could have a run around. It was lovely to walk by the sea again but I rather overdid the walk and was exhausted by the time I got home.
Tuesday - Pete took the children down to the beach to look for fossils but all they found was fools gold and then we came home as Woody had a scout party to go to and then my friend came round so that was good.
Today, I intended to rest as was tired after being away and have a cold but by the time the carer had been in to do housework and the other one did shopping for me, the district nurse to take blood and the hopice nurse had been it was lunchtime. Spent some time on computer but not much time. Then I had to go to the railway station to change my ticket as we're going to the funeral on friday of another member of our Gobby Gang. Really did think she'd outlive me but she didn't and was only just 31 so I think it will be an upsetting service for many reasons.
So now as I keep falling asleep at the computer, I think it is time too stop. Let you know about the chemo tomorrow.

2009-02-13T11:56:00.003Z

Miserable Wednesday Night and What Happened at Chemo this Week.
I'm sure this is too much information so if you are eating or feeling of a gentle disposition I wouldn't read the next paragraph as it is rather toilet orientated.
Since my last chemo, I have had terrible problems with my bowels and been so constipated. The problem that I have is that I don't feel constipated, I just have to remember to keep a mental note of when I've been or not and also I can tell by how swollen my belly is. I also don't get the normal feeling of constipation in my lower bum. I seem to develop a blockage under my ribs which causes spasmodic pains like labour pains. However, this week I didn't even get the spasms.
You will be shocked by how much laxatives I took with no result until the this wednesday night and throughout my chemo on thursday. During the week, I took 2 - 6 movicol a day, dulcosulphate tablets - 2 -5 a day, picosulphate 20mls saturday, monday night and 2 x 30 mls on tuesdays and 20mls senna on sunday night!!! I'd also drank plenty of fluid. eaten plenty of fruit and fibre and still nothing until midnight wednesday night/early hours thursday morning when I started to have horrific diarhhoea. As I was so worried about chemo on thursday and was worried I wouldn't sleep, I took my usual painkillers which make me sleepy and a sleeping tablet but also some oromorph and diazepam.
On reflection, this was not the wisest of ideas as I fell off the toilet in my sleep and bashed my head really hard on the hydraulic bath seat as I collapsed forward. I woken up with my head on my knees on the toilet with totally numb feet where I must have been pressing on the blood supply to my legs so I wasn't sure how I was going to get back into bed so thought if I could gently collapse forward I could crawl back to bed!! Unfortunately, I just sort of collapsed in a heap and surprisingly didn't wake anybody up and yet the bathseat must be against the wall of the bathroom/bedroom and Pete's head would have been directly infront of the seat but it didn't wake him up. I just crawled back to bed and went to sleep.
When I woke up in the morning my face was sore but there are no bruises to see at all. We all got ready for school work etc. My sister and her eldest daughter, Mags had come down the night before. They had had a rude awakening at 630am by AJ who had gone downstairs and switched all the lights and the telly on!!!! Bless him, when he realised, he did turn the lights down and had the telly on quietly but it meant they did not get a whole night's sleep. We left for the hospital about 9am and got to the hospital in good time for my appointment. I was just thinking that I hadn't told the receptionist I wanted to see the chief consultant but the next minute the same Registrar that I saw last week came in. As soon as she saw me, she went 'wow you look so much better. I have no problems continuing with taxcol this week and we will wait for your CT results before deciding what to do.' the only downside news was that the nodes in my neck are stilll there so it isn't a cold related thing that I had tried to kid myself it was and that my iron levels are dropping so will probably need to have more blood transfusions again. my last 2 units I had mid december so that's not bad really.
Now we know the reason why I looked so well and not tired - it's a big thank you to the Benefit makeup company. Their foundation is so natural looking and their eyebrow enhancing wax/powder kit means I can paint on my eyebrows in a more natural way so it's a big thank you to them and the 'Look Good, Feel Better' charity that showed me how to apply make up correctly after 30 yrs of obviously doing it wrong!!!
Since I saw the same lady registrar who I saw last week and she wears make up, I was amazed she couldn't see that it was only make up!!! Anyway, feel much happier that I can stay on the taxol till I get the CT done and the results known. I'm in no hurry. The other good thing is that my wbc and neutrophils are still OK and my swallowing is better.
After I'd seen the registrar, I felt really sleepy so kept dropping off to sleep only be woken up by the need to urgently rush off to the toilet as I still had diarrhoea. I went so many times and thank goodness for my sister and Mags or I'd have never got there on time.
I actually felt quite poorly as I was feeling hot and sick and ended up laying in the recliner without my woolly tights and just my skirt and top. I actually needed an extra anti-sickness injection as well. My stomach was also so swollen and noisy like a drain emptying. Whilst I slept, mags and my sister went back to the car and had a sleep there as well!! As I was feeling poorly, they ran the taxol slowly so we never left till 245pm and I had to leave in a wheelchair as I felt too faint to walk.
When we got home, I changed into my nightie and after my sister and Mags left, I spent the rest of the afternoon and evening in bed with my wheat bags.
My friend did come over and we had a lovely chat in my candle lit sanctuary.
Today, I'm having a duvet day and have spent the whole morning in bed apart from putting some washing on the line!!! Never a blog goes by without the washing being mentioned. Perhaps I should rename this blog 'the blog about washing'.
My stomach feels more settled but I'm doing the usual friday thing of having a bright red face. Think that's me up to date now.

2009-02-13T10:54:00.003Z

Dreaming of Normality
One of the threads on the forum has been about mentally and physically having non-cancer days which got me thinking. The following is a rework of my reply so sorry if this sounds familar.
I think I have coped living with secondaries by trying to have a degree of normality but my normality is so different for a 47 yr old and I now can't imagine a 'normal' life at all as sadly cancer effects virtually everything I do. This disease has robbed me of too much to allow me to operate at anything near my normal capability so that in reality I can't have 'non-cancer' days.
In my dreams, I have non-cancer days but nearly everything in real life is effected by bc.
In a dream world, today Iwould like to go up in a hot air balloon over an african reserve park. and see all the animals grazing or walking around. I would have pink/rose champagne and Gordon Ramsay's Just Deserts Chocolates. Sounds so blissful rather than being indoors on a lovely, brigh sunny but very cold and windy day!!!
In a more realistic today's world, I would like to be able to use all my fingers so I can type this quickly and accurately, not have a swollen belly and diarrhoea or be trying to find a position in a bed or in a chair where my back doesn't hurt, where my heart and breathing rates are normal, my ankles aren't swollen, I have hair and eyebrows, I have no lymphoedema, I have a left boob and my children are not looking scared as they know how ill I am and will die soon. I would also like to be able to eat any food and not have to be careful what I eat or have to eat it slowly or with loads of sauce on so I can swallow it. (not much to wish for then!!!).
As you all probably know, I do loads and go out a lot and I try not to let the cancer stop me doing things but it does. As a family, we have all adapted to 'an ill mummy' and the children have to care for me which seems so unfair. Their lives are dominated by my health - 2 nights ago, the 11 yr old twins were caring for me. My son was preparing the nebuliser so I could breathe and my daughter was heating up wheat bags and arranging my pillows and my 8 yr old was helping me get undressed. That is sadly an increasingly 'normal' day for me. People are amazed by what I achieve when I am so ill but I have always been a driven person who wanted to achieve things and I am a frustratingly stubborn and determined person but that personality trait has I think kept me alive and trying to live normally!!!
For many of us living with secondary cancer, we can not escape from the reality of having cancer everyday as it causes us pain, difficulties with everyday activities that it makes us angry, bitter, cynical, sad, tearful, scared, frightened and living with the uncertainty of when we will die and how that will be and where the next secondary will be etc.
The other thing that has happened with my secondary cancer is that I have got shorter as my spine has collapsed and my hip is wearing through with the cancer. I went on a special height measuring course in 2002 and know I was 173.3cm but in december 2008, I was measured and I was 170.2cm and over the weekend when my pain in my back was so bad, all the adults appeared to have grown so suspect I'm even shorter now and even more round shorter shouldered.

2009-02-13T08:19:00.003Z

Week between 5th and 11th February

My swallowing did improve slightly after the taxol so I felt it was still working and I was justified in pushing for it.

We also made it off to see Essex to see my sister. It was a bit touch and go weatherwise. The snow had gone where we and my sister lived but in north Hampshire, snow showers were forecasted and for once they got it right as we went through snow showers in Basingstoke and Guildford.

We arrived at our Premier Inn about 9pm and dropped our stuff off before going to my sister's and dropping Laura off. somehow, even though I'd tried not to lift anything, I must have done as my back and shoulder had started to hurt. We returned to the hotel and I slept well despite the boys talking in their sleep. They are both so chatty at night. Woody was playing some kind of Playstation game in his sleep!!
Saturday, we went to Tropical Wings which is a bit of a misnomer as there are few wildlife with wings!! There were some beautiful butterflies and cockertoos, parrots and birds of prey but a lot of tortoises who weren't randy for once. Perhaps the cold had dampened their ardour!! Outside there are wallabies which were so cute and we could feed them. Quite a few had joeys in their pockets and they would poke their heads out which was so sweet. There were also some hilarous chickens who walked stiff leggedly and had really long, fluffy legs. They were even funnier when they ran and we regretted not taking a video with us as I'm sure they could have made it on to 'You've been framed' .
Sunday, my sister and Pete took the 5 youngest children off to the local park and I spent time on the computer. Somehow the sunday dinner was late so Woody was able to watch the arsenal vs Spurs match he wanted to see!!!

Our friend and hubby started work on decorating the kitchen. Our kitchen was extended in an odd way as you would expect by the previous owner. Our friend started at the 'wet end' (it can not be described as an utility room!! This was the original narrow galley kitchen and has the sink and dishwasher in and the only radiator. They chose an off white which was supposed to have a hint of peach in but once on the walls, it seemed to have a greenish hue so looks odd when you look from the other end out to the hall. The idea is to have a black and white kitchen and i think we are going to have to put in some kind of lino to get the floor to match as at present there are orangey ceramic tiles on the floor which have been laid very unevenly so that the kitchen door scraps over the floor. Why he couldn't have levelled the floor off evenly before laying the tiles only he knows!!! I don't mind them but Pete hates them but we can't afford a whole new floor and I couldn't live with the disruption it would cause either. We've also got to make a decision about the cupbiard doors. 1 of the doors rotted away by the hinges s we have either got to have new doors for the whole kitchen or take the doors off at the 'wet end' and put the things that are mainly cleaning things in baskets and have no doors or put curtains over the gap. I fancy either no doors and baskets or a curatin whilst Pete wants to make new MDF doors so we'll have to wait and see after costings and time available.

I went to the hospice on tuesday and it was quite sad as in the last month, 3 of the people who had been going for the last year like me had died. We had a quiet morning and in the afternoon we had a little service for them and a copper leaf with their name on was added to the remebrance tree in the Quiet room. It was a lovely service.

Also one of our friends from our Gobby Gang died so that was upsetting. She was only 31 and had had a really miserable time in the last year and especially since June. We've been making very tearful phonecalls and texts to each other since.

Wednesday morning is always busy as the district nurse comes to take blood and flush my line and 2 sets of carers come in to do house work and shopping.
After they'd gone, I got taken out shopping with Debbie. I decided to walk as we were only going to one end of town. I did buy some more of that wonderul foundation -the company is called 'Benefit' and not whatever it was I called it. I also bought some combined wax/powder to put in my eyebrows which are not growing back. They've come back at the part closest to my nose but the last 2 cm are missing and the pencil looks so false. I'm also concerned that my hair on my head is coming back so patchily. I had it cut recently to blend in more the bits that didn't fall off and the new growing in. Looks like it needs doing again. There's a lot more white hairs this time. I jus hope it doesn't come back in such tight curls or so black. it will be a releif to have hair as it has been so cold especially the back of my neck.
Debbie and I had had a lovely lunch from the Stir fry section in John Lewis. I think we could have done with one meal between us as it was huge. We did a bit more window shopping and then treated ourselves to a cake and coffee or rather Debbie treated me. Thank you. Still need to return the tracsuit bottoms and zip up hoody I bought in Primark. The trosers are too wide legged andI'm scared I might tripup and the top's sleeve is too tight for my swollen lymphoedema arm. Laura liked hers and I bought some t shirts and trousers for Pete which are fine.
When we got home the kitchen looked amazing. it looked so different being bright white and so much better. I think we will put new tiles on top of the old ones rather than repaint them as it will be quicker and less messy but think we do need to get kitchen work top as the exisiting one is brownish and won't go with the black and white. Unfortunately, the dust from the kitchen decorating really effected my chest and by the evening I was in a real state but the twins came up trumps and Woody organised the nebuliser and Laura organised the wheat pads and pillows and Pete got AJ to bed. Can't wait to see what it looks when it is finished. Our friend is coming back next week when we are away - expect he'll get on much better without us being around.
thank you to everyone who has helped us this week especially Pete's friend and Debbie and others who have cooked and shopped for us.

2009-02-06T00:46:00.002Z

Taxol Failing and Further Spread
I started an 18 week course of taxol on 16th August last year so was supposed to have had the last one on Christmas Day but due to hospital admissions,eurodisney,christmas and new year, I had the 18th today It seemed to be working as my liver function was normal after my blockage in july and i could eat normal food as my tumour squashing my oesophagus had shrunk as I had been on 1st stage baby food from april to sept last year. However, since christmas my swallowing had become more difficult but had improved through the 3 weeks in january when I had the chemo. However, only missing 1 week last week I'm now back to regurgitating bread etc. I was hoping that by having more taxol which I'd been promised previously would reshrink the tumour. However, the Reg I saw today feels I am too tired and that taxol is failing as my skin met has reappeared and my breast lump has returned. I also pointed out that I felt I had some swelling on both sides above my collar bone and my hickman line was hurting where it disappears over that area. She had a feel of my neck and says I now have further spread in my lymph system in my neck so wants me to stop the taxol and have a CT scan asap - means 2 - 3 weeks and come back to clinic after the cT. She said I looked too tired to continue but my blood tests were absolutely fine and hadn't changed. I'm not anaemic and my wbc is respectable. I want to continue until I have my CT scan as I know how aggressive my cancer is and if I stop taxol now my CT scan will show huge growth whereas if I stay on taxol it will be a mixed bag hopefully and I will be able to swallow. She was going on about my quality of life not being good if I am tired and to me, my quality of life is more about being able to eat normally with my family even if I sleep more in the day. The children would prefer I could eat normally and have an afternoon sleep than regurgitate and eat pureed food and be active.It occurred to me when I got home that I hadn't put any make up on this morning when I usually do wear it to chemo so I'm better at doing my makeup than I thought I was - thank you Beneficial all in one foundation! (Am running out so thought i'd buy a cheap version as now on benefits but think I will buy the same again if it is that effective!!!)Am scared that it has spread whilst on chemo but actually think it grew during those 4 weeks off over christmas as last time it only took 3 weeks for the liver one to appear and make me go yellow so it probably did grow during that time. Also, if stop taxol now I'll be back to pureed food in 2-3 weeks and I just can't face that.Am I being unrealistic to push to stay on taxol for 3 more weeks to see what CT scan is like and to see if it does improve my swallowing and shrink my lumps and skin ones.I really have reached the end now of chemo options unless they are willing to let me have vineralbine again which they were in November after I recovered so well after nearly dying. Next week, I will go with someone who can fight my corner and I will see the consultant rather than the Reg.Came home very upset and tearful but at least this time I had managed to talk to one of the chemo nurses about what had happened today and she was really good and did spend quite a lot of time with me.I am not ready to die - I still have a lot of energy and my breathing is OK but knowing how aggressive my cancer is if i don't have chemo I will be dead within 8 - 12 weeks and having pushed the boundaries this far, I want to push them further and live a little longer and I am so scared of not being able to swallow as it was so awful last time. I know I can't go on much longer - my heart is bad, I need diuretics and my lung function is poor but I have a reasonable but limited life and i just want a last chance. I live too far away to go on trials at the marsden as it would defeat the object of staying alive if I'm not here half the time.You're advice pleae - should I just accept I've reached the end or do I push to stay on taxol for 3 more weeks and switch to vineralbine.
I do mean to go back to telling you about eurodisney asap but other things are more important at the moment.

2009-02-02T17:38:00.002Z

How Do I Post Links and Photos?
I would like to add the odd photo here and there on this blog and also I follow some other blogs which I think if you enjoy mine you'd also enjoy theirs but again I can't seem to do it. Please could anyone help me - especially those who use blogspot - on how I get the other blogs listed on the side and how I get photos on!! Sometimes I seem to be such a useless techno-bod

2009-02-01T12:16:00.004Z

Disney Character Breakfast

Despite going to bed at midnight we had to be up at 8am to get the shuttle bus into the Disney Village for our Character Breakfast. It was a really grey day so somehow it didn't click in our heads how cold it would be outside so we didn't put on our extra layers before we left the hotel!! So silly of us and we'd packed our warm layers as well so spent a lot of the day being cold. Poor mum kept shivering so much I was really worried about her. She just didn't seem to be able to keep warm at all so if any of us were on a ride then we tried to get her into a shop so she could warm up.

We got to the Disney cafe at the end of the first sitting so saw the Chipmunks, Goofy, King John and, of course, Mickey Mouse (why are they so obsessed with Mickey Mouse!)??? We got our photos taken with them and collected their autographs. Then we could start eating and for me to start drinking fruit juice and tea. The breakfast food seemed better than 3 years ago and Woody and AJ really enjoyed the sausages and bacon and I had some scrambled eggs. It was the usual croissants, pain au chocolats, bread rolls, yogurts, ham, cheese, cereal and my favourite - creme caramels!!! Laura and AJ were happy with their hot chocolate and Woody drank his apple juice. I kept making the children eat as much as possible so that we wouldn't need to eat lunch as it is so expensive now due to 1 Euro = £1. We also saw some strange raggedy cat creature which the children thought was something to do with the Aristocats but who knows.!!! (Pictures are on Facebook - I can't seem to operate the photo function here!!!!)

When we left, we passed the RainForest Cafe so booked a table so that we wouldn't need to queue at the end of the day.

We got into the Park about 1030am and equipped ourselves with maps and timetables of shows and appearances of different characters.

We got onto the train without queueing at all and planned what we were going to do and which chracters we wanted to 'meet and greet'. I drove the rest of our party mad as all I wanted to do was to meet and greet Winnie The Pooh and get our photos done with them!! Firstly, we stopped off at Mickey's Winter Show which we all enjoyed as it was quite fun and they were iceskating which we all enjoy watching.

We got into the queue to see Winnie the Pooh about 15 mins before the end of his meet and greet times. This time, there was Winnie the Pooh, eeyore and Tigger so was pleased about that but would have been good to see Piglet too!! It was so dooly organised as every 10 minutes or so the characters would go off the stage and up to the behind scenes doors and then reappear again and we had no idea if they were coming back or not. Eventually, one of the helpers roped us in the queue in so that no-one else could join. They did photos with each adult and children and signed autographs so it was very ling winded and we must have spent about 40 minutes waiting for our turn to have our photos done and things signed. Anyway, I bought 2 official photos as they were quite good but it was only after I bought it that I realised the prints were 6 x 8 and not 4 x6!! The frames Disney sold were all 4 x 6 or 10 x 8 as well but the photos were the other size so very strange!! The photo that is on my digi camera loks OK so hopefully can get that printed intioa 4 x 6 format so that it will fit into my lovely Winnie tthe Pooh frame that I bought in the Disney Store here.
AJ and Laura went on the Indiana Jones ride and when they came off, they were so excited as they done a full 360 degree loop. I hadn't realised that when they went off to do it but they were so pleased with themselves. they also did the runaway tarin thing which is what I wanted to do but Laura wouldn't let me as she said it was too bumpy and fast for my back. I did do the Buzz Lightyear ride which is where you sit i a carraige and fire a laser gun at Zs and score points which was great fun. Laura and AJ also did the Space Mission 2 ride which is very fast.
All mum and I managed was the rides in Fantasy land for toddlers. we did the Little World boat ride with the very annoying song and did the cup and saucer ride.
We ate a crepe for lunch but it was outside so we were so cold still but there was nowhere up that side where you could sit for just a drink inside. Lots of birds came round us for crumbs which excited Laura a lot and then a man came and swept up all the crumbs that another family had left behind for the birds which was a shame.
After that we saw the parade which was good but it was a shame there were no parades in the dark as they look so spectacular.
It was so much quieter than last time that it was lovely to go round and not be pushed around by other people or queue.
We went off to eat at the rainforest cafe and did the meal deals to keep the cost down. AJ was upset we didn't get a table by the gorillas but apart from that it all went well and we went back to the hotel and the children went off swimming again till 10pm. We all slept well that night and had rearranged our breakfast time so we could get a lie in or at least that was the idea.

2009-02-01T10:11:00.003Z

Eurodisney and Air France
So for the second day in a row, we all got up at 530am and arrived at the airport. It was a foggy day so it didn't bode well. We got the assistance through the security again. The help at the airport is fantastic. The person who took us through told us due to the fog the plane had not taken poff from Paris and it was up to us whether to go through or not but there was slightly more to see and do once through security.
I did find it odd that the security people did not want to see my doctor's letter as I was carrying syringes and needles. I had the potential to take my own blood and threaten people with it after all but they just put it through the machine and gave it all back to me!!
We were told the flight had been delayed and then told it was delayed it to 1045am instead of 915am. One of the passengers was there from yesterday and she was asking the flight organisers what was happening and she was very calm but insistence. One of the airport staff got very angry and was shouting at her and me despite neither of us getting angry with her!! At 1015am we were told the flight was cancelled!!! As we queued to find out what was happening we found out we were off to Heathrow to get the 4pm flight!!!! As I was classed as disabled they provided us with a taxi whilst the others got the coach.
Terminal 2 was lovely and quiet and small so we could get round easily and passanger assistance was good.
On the way up to Heathrow, I looked at our tickets to see that the return ticket was booked for thrusday and not friday so when we arrived I went to see Air France. I found out we were booked on flights for both days!!! She hand altered our tickets to read 30th!!!! I also asked to see if we could book our seats for the flight now as check in was not for another 1hour or more and I wanted us to sit together. She did that for us and so I asked about later flights back on friday. She could not get us on the 915pm flight back to Southampton so we changed from the 345pm flight to Southampton to the 1900 flight back to Heathrow. I demanded they paid for us to get back to Southampton by taxi. She refused saying that their obligation was to fly us back to Southampton and that by refusing the early flight I was responsible for us to get back home. I pointed out due to them we'd already lost our afternoon in Paris and by coming home on the early flight we lost friday as well and we'd paid for 4 days passes. I never agreed with them that I accepted responsibility for us to get back to Southampton and left it at that saying I would make them pay.
Thye plane left at 4pm and I was so pleased it was an airbus as it was a much smoother journey than going on a turbo prop plane from Southampton. AJ had been scared by landing and takeoff after our bumpy experience from Lemnos so he felt much happier after takeoff to see that it could be done smoothly and without all that painful earpopping. The other good thing was that the flight was only 45mins instead of 75mins.
We arrived at the Charles de Gaulle airport and again was impressed by the assistance we got and the speed that our baggage arrived. We easily found the coach and set off to the Eurodisney Resort.
We arrived at the Hotel at about 730pm. As we got off the coach, ny coat got caught on the handle and the pocket ripped and I fell forward onto my knees. I was so embarrassed and desparately wanted to get off and into the hotel.
We were given a room in the new part of the hotel which was quite a hike away from the lifts and the hotel facilities and the room was cold so we turned the heating up and unpacked. It was as the heating worked we became aware of a strange smell and the room with the bunk beds in smelt of sewers and then noticed a dried up patch of sick in the doorway between the 2 rooms. Laura took responsibility and went to the reception and explained our situation. One of the staff came up straight away and agreed about the smell and said they would give us a new room.
I ended up having to repack everything on my own as mum took the children swimming. The staff took my luggage across to the new room but I was still left exhausted from all the unpacking, packing and unpacking and hungry.
Luckily, the 'pub' part of the hotel was still open and we had some food. The children had hot dogs which had cold frankfurters but a hot roll. Mum and I shared a panini.
We were so glad to get to bed but didn't succeed till midnight french time and we had to be up early to go to the character breakfast.

2009-01-26T16:19:00.002Z

URGENT _ NO MORE EMAILS TO JOHN DENHAM PLEASE
Hi all
Thank you so much for all your emails and letters of support to John Denham, MP and Mark Hackett, Chief Executive, Southampton, NHS Trust.
I have had contact from John Denham, MP who is investigating for me and I will let you know what is happening. He has asked for no more emails etc to be sent as he has had an overwhelming response and he is unable to respond to you all. I will let you know what is happening when I find out.
I hope that we haven't overdone it - I had no idea so many people would respond!!!!! (but so glad you did) I would like to see what initially happens and if we get nowhere then to restart hassling. Thank you all so much but I don't want to endanger the support from my MP!!
Surprised to see a post from me - so am I surprised to be at home when we are supposed to be in Paris!!! True to my dippykate nature, AirFrance cancelled the flight this morning due to a 'technical' problem so we came home and are going tomorrow morning and now coming back on friday instead!!! Not sure we believe 'technical' is the right term - there were only about 30 of us booked on the plane so you can make your own mind up about that!!!
Thanks so so much and we are truly overwhelmed too with all of your kindness.
Katexxxx

2009-01-25T23:01:00.003Z

Thank You Mum
Poor mum arrived here after a horrendous and nearly 3 hour journey in the rain to get here so we can go off to eurodisney tomorrow. She paid for this trip so want to make sure she has a good time too. I'm not sure what we would have done without her since I've been ill but don't think I ever thank her enough for the help she gives us so wanted the world to know that I love her very much and am so grateful for all the help, in all shapes and forms, she has given us. Just hope she enjoys it there.
Everyone else - I'm really grateful to you all for all your help and support especially in the last few days but hopefully you have a 'wonderful mum' or one that left you with good memories so that you understand why I wanted to give an extra special 'thank you' to her.
Well, we've packed - why do you never have the right sized luggage for the holiday that you are going on? I was sure we had an inbetween sized bag which was what I needed but ended up with 2 rather over sized bags plus a suitcase. i find it very hard to pack light for the children plus the weather forecast keeps changing so don't know if it will be very wet or cold or neither.
Just hope haven't forgotten to pack anything.
Just want to go away and forget all the problems here and have a good birthday and then will face the tax credit, ESA and complaints people when I return. We get back late thursday night and it's my birthday on friday. I really want to resist the urge to open post on my return until the sunday night or monday morning when I go to see the MacMillan bnefit advisor. This time, I will get them to do the chasing as although I come over as so capable, I'm struggling with all of the things that are happening. just thought haven't had the final bill from the plumber yet so another thing I don't want to think about.
Hoping when I get back hubby and friend will have redecorated the hall/landing and I like the colour!!!
be off line for a few days now.
Thank you all for everything.

2009-01-25T00:12:00.003Z

Child/Working Tax Credits
Now having problems with the working/child tax credits system!!! As you probably know, my employers who had previously been wonderful have now decided not to pay me anymore but I will get paid the equivalent of working till end of february so thought I should inform the working/child tax credit people as the adverts keep saying you must. However, instead of increasing our money they are saying we've been overpaid and dramatically cutting the money they give us. It's just such a shock losing a huge amount of our income all at once and I can't see how we can pay our mortgage, bills and buy food etc between february and april. I just hope when I'm more awake I can see a way through all this.
Hubby only works 16 hrs a week in a shop so you can imagine that is not good money but has been turned down for carer's allowance as he earns just over the allowed amount!!!
The employment support assistance (ESA) which is the new name for incapacity benefit is still being looked at and I won't find out till next week or later how much I will get from them. Am really worried about how long this will take to get the money as people from the forums have not received any money from ESA despite their claims being put in around November time. We will just be bankrupt if we don't get some more income - with losing all my salary and a few hundred pounds of child/working tax gone - we've hardly got any money coming in.
Our insurance on our mortgage has run out and there has been a cock up with my loan insurance so it feels never ending!!!
However, as I won't be earning anything in the new tax year, we will get the full money whatever that is from April and be entitled to the other things like free school meals and help with council tax bills.
I don't think I've ever spent so much of the day crying and worrying since diagnosis. Unfortunately, a lot of my crying was in a rather public place as it was the local young people's pantomime performance. It didn't help that the seats were like benches so ended up sitting on my own on a chair in the side against a wall so I could rest my back but of corse was highly visible to everyone including the children who are of course extremely worried about how we will copewith no income coming in. I hate being that upset in front of them and I hate being separated from them when it was supposed to be a family outing. I did spend the second half with them but have suffered since for sitting in an unsupported bench seat.
The pantomime was Alladin which is my favourite pantomime. It had the 'traditional' Alladin lead played by a female and then several pantomimee dames. They were all excellent and it was very enjoyable. They all had wonderful singing voices as well so it was a pleasure to watch and listen to. All the panto dames were really good and made the audience laugh a lot. Lady Hamilton - you're daughter was really good but she needs to improve her sweet throwing skills - and from a daughter of a sportswoman as well!!!! Only the front 4 rows got any sweets. Her cousins and ourselves didn't get any!!!!
If anyone reads this please can they tell my other friend whose daughter was in it that we were very impressed by her daughter's dancing and the small amount of speech she did. She was very easy to hear and I couldn't believe how long her hair was when it was all straightened.
It brightened up my day and I'm glad we went.
This evening all poor AJ wanted to do was to sit snuggled into me and cuddling me. He was obviously very upset by how upset I have been since opening the tax credit letter. I did manage to take a couple of good photos on my phone of him and me cuddling in bed together like we did with the twins at new year's eve when he was asleep.
This is a very reverse order blog entry - the first thing I did this morning was to go to Tescos with Woody to get some food and sweet supplies for Paris. It's ages since we used to do tescos at 8am on a saturday morning. The queue for the breakfast was just as long as before and the poor breakfast shift run round like headless chickens trying to serve up food and take money at the same time. They've altered their breakfast price list as well. I don't think I've been up at tescos on a saturday morning since before I was ill so that will be 4 years in April. How scary is that?
Woody had his favourite sausages, bacon and backed beans and then a chocolate muffin and I had a fried egg, hash browns, tinned tomatoes and 1 sausage so that was good.
I then spent an enormous amount on stuff for Paris in the hope it will save us money in the long run as the pound is so poor against the euro and then of course got home and opened that letter and the day went downhill from then.
Apprently, we can check in on line and book our plane seats on line as from 3am today. Don't think I will get up at 3am to do this and just hope I can navigate my way through how to book seats etc in the morning when I'm awake properly.
I'm just glad I'm away with my mum next week and seeing the MacMillan benefits advisory on 2nd feb so we can sort this money issue on my return.
Thank you for your help and support.
Kate

2009-01-24T20:15:00.003Z

Thank You for Your Help
I'm really overcome with all your responses and kind messages of support and all the emails and letters you have sent on my behalf to my MP, the Chief Executive of the NHS Hospital Trust and their Complaints Manager.
I thought on friday that Mark Hackett, the Chief Executive, had not responded to my email but infact had replied to our family email address and not my personal account from which I'd sent the emails. He had actually replied at 739am friday morning but I did not find it till after midnight as I was not expecting him to use that email address. He must have looked at my complaint 2 years ago and replied on that email address.
The sister from the chemo unit also phoned me at lunchtime and said that from now on they would organise a treatment recliner chair for me but only after I'd seen the consultant so it is only a partial solution as I can wait up to 2 hours to see the consultant from my appointment time. It was what was compromised on before but then the nursing staff in the chemo suite refused to give me a treatment chair so I'm not sure how satisfactory this will be as it still means waiting in a hard chair making my bum sore and does not support my crumbling spine or allow me to raise my feet to prevent my ankles swelling.
Today, I received a letter from Mr Hackett, saying that they will investigate my complaint so really am back in the same position as I was in 2006 when I made my first and only official complaint about the long delays in the chemo suite. Then I was told it could be negotiated to ensure I got an early appointment but this just hasn't happened and I was told that the seat situation would be investigated and new chairs were going to be ordere. Apparently, one week some new chairs were tried out but nothing has been seen or heard about these since. The last thing I was told which was probably about 6 months ago was that the chairs needed to be recovered due to infection control issues but no new chairs were going to be ordered. I'm sure it was one of the sisters who told me this.
I'm not sure how many people have responded but it seems a lot and a website has been opened on my behalf. I am really overwhelmed by your response and extremely grateful - I'm just hoping it doesn't all backfire on me now as I'm sure everyone is fed up getting all these emails supporting my complaint. It shows how strongly other people feel about how I have been treated and for that I'm extremely grateful and the softly, softly approach I took last time didn't work so hopefully this mass mailing will make a difference to me and others in my situation. I'm hoping the involvement of my MP will make a difference. I'm just very scared it will make things worse for me but then is that possible???
One of my friends wrote in her letter that she felt that the nurses did not understand my pain and were even rolling their eyes up with impatience. I had felt for a while that some of the nurses didn't like treating me but thought I was paranoid but she obviously has noticed it too. I think after nearly 4 years of going 1 -4 weekly we are all fed up with each other but they have to be professional towards me and sometimes it doesn't feel like that is happening whilst others go out of their way to be kind and helpful. I know they are horrendously over worked and many frequently work much longer hours than they are being paid for and can only get time back in lieu. There are some nurses who I suspect never claim the time back.
The whole cancer unit seems wholly understaffed and under funded. The day beds are being used as part of the ward still so day patients who should have beds are using the long stay chemo chairs and so this has an impact on people like me who are too ill too sit for that long in the waiting room. I don't understand why I have to provide my own pressure relief cushion as well and then it occurred to me that really it is expected for people to be 'well' and ill people like me are supposed to be in the day beds but can't as they are being used as wards beds so the whole system is in danger of ollapse which is scary.
The one thing is really good at my hospital is that the wait for urgent CT, MRI and ultrasound scans are minimal and urgent echo and xrays are often done the same day and the results are given on the same day unlike some hospitals so I suppose it is a trade off but it shouldn't be like this.
Anyway, once again thank you so much to all of you for helping me and supporting me and I will let you know what is happening and if I can put the website address on here.
Wait till you read about tax credits, my loan and the bank and the benefit system in my next post and our whole financial situation - you won't believe what has happened now.
I'm juust so glad we're off to Eurodisney on Monday so mum can look after me and we can have some fun before I face trying to sort out the benefits we shuld be entitled to!!

2009-01-22T23:01:00.005Z

Another awful day at chemo
I arrived early as transport arrived early but I bought tea and newspapers so wasn't at the unit much before 11 for my 11am appointment. I saw the consulatant about noon and she ordered my treatment about 1215pm. I saw the oncology pharmacist brought my chemo to the unit at 345pm and I started my treatment about 430pm after eventually being offered a recliner chair at 4pm after a receptionist found me one as the nurses said there weren't any (which was true in the short stay but there were 4 empty recliners in the long stay unit). I feel the nurses are so unsupportive to me. They told me again it was because I had a late appointment but this appointment was 1115 and my previous appointments have been at noon and 1245 and there were at least 8 women after me and all had their chemo before me. They told me it was done in time order when it clearly isn't. Pharmacy still prioritise primary women and so leaving us with secondaries to sit around in great pain for longer. The chairs are so unsuitable and I have resorted to bringing my own pressure relieving cushion and back support. I can't out my feet up so my ankles swell and I always end up in great pain so resort to oromorph and diazepam which I do not do at home usually. I feel the nurses are unsupportive and say it is because i have late appointments but as you can not make an appointment until after you have seen the consultant, so once you have a late appointment it is impossible to get an early one. Only the receptionists and research nurses give me support. The breast care nurses do nothing and the chemo nurses have been blunt and unhelpful and don't seem to believe I have pain. I left home just after 10 today and got home at 730pm. I waited 3 and half hours for the chemo to be made by pharmacy and then at least 45min after this and more like an hour to start the chemo so not finishing until after 630pm.
I was last to be seen by the chemo nurses and yet there were plenty of women who saw the doctors after me who were all had treatment before me.
I feel they have a duty of care to me and are failing. I have to bring in my own pressure cushion and back support, ther is nowhere for me to put my feet up. I can not lie on my side in chairs that are really like slightly padded dining chairs. I always end uo in so much pain that i have to take liquid morphine and diazepam which is something I rarely do at home now.
I have emailed yje chief executive of the hospital trust, Mark Hackett, the complaints manager, Lesley hobbs and my MP John Denham so if you wish to support me here is my letter and their email addresses - all googable so not broken any rules I think

Dear Mr Hackett, Mr Denham and Ms L Hobbs
Re Kathryn T, Hospital Number *****97, DoB 30th January
I am writing again to complain about the unacceptable delays I am experiencing at the chemotherapy clinic for breast cancer and breach of duty of care to me.
I wrote an official complaint letter to PALS in February 2006 and had a meeting via PALS with the Chief Oncology Pharmacist, Senior Oncology Pharmacist, Liz Hall, Senior Nurse - Cancer Care and Sister Helen from the chemo unit. I waited nearly 2 months for a reply after that meeting for a letter from Mr Hackett which is outside of the Guidelines for dealing with a Patient Complaint.
In the letter, it said the situation regarding the uncomfortable and unsuitable chairs would be resolved and that I could have early appointments to see the Oncologist due to my child care arrangements. None of this has happened. I am unable to get early appointments as you can only make an appointment after you have seen the oncologist meaning that those who start their treatment with early appointments always book those slots and there are none left for people with later appointments regardless of length of time the actual chemotherapy treatment is or the state of health that person is in. Having a late appointment ie one that is after 1030am means that I have an even longer time to wait to see an oncologist as the backlog in pharmacy and treatment areas have built up
In my consultation with Dr Nick Murray, Consultant Oncologist, on 8th January 2009, he informed me I have about 3 months left to live as I am now so frail and confirmed that I have a crumbling spine due to my bony secondaries. I also have bony secondaries in my left hip and pelvis so this all makes sitting very uncomfortable for me. The chairs in the chemotherapy waiting room, C3, are low backed chairs which do not support my back and infact, the back ends just at the most painful point in my spine. The department is unable to offer me a recliner chair or bed to rest my back. I am also prone to pressure sores and have to bring in my own pressure relieving cushion from the Hospice. I also suffer from swollen ankles and again, there is no facility for me to put my legs up.
Due to the Oncology Department's lack of patient care, I feel I am a victim of neglect and that the Department is failing in its duty of care towards me. Each week, I have to resort to taking oral morphine and diazepam as my pain is so great. I never need these at home or at the Hospice.
At my appointment on January 8th 2009, there were over 60 women waiting to be treated with only 3 nurses able to adminster the chemotherapy. I had a 1245pm appointment and there were no spare seats for me to sit on so I spent the day sitting in a wheelchair. Dr Murray saw my distress and saw me on time. I then waited until 5pm for a recliner chair to be free so that I could relieve my pressure areas and did not start treatment until after 530pm and finished at 8pm and so was not home till 830pm. This is unacceptable. I have avery limited life expectancy and getting home this late means I do not see my children on a thursday which adds to my distress.
On Thursday 15th January, my appointment was at noon. I was not see by an oncologist until 130pm and got into the treatment room at 430pm and finished about 630pm.
Today, Thursday 22nd January, my appointment was at 1115am. I was seen just after noon and my treatment was ordered approximately at 1215pm. By 4pm I could sit no longer. I had been to the cafe, the MacMillan Centre and had reiki at the Centre but was still in pain. The Pharmacy technician told me at 345pm that she had just taken my treatment into the short stay treatment room but I was told there were no spare chairs. I was in tears as I was in so much pain. The receptionist, Elaine, went to the long stay day unit and found me a recliner chair so I was able to lie on my side at 4pm. I did not start treatment till after 430pm and finished around 640pm. It was a much quieter clinic today so I do not understand why I was so delayed and was actaully seen last for my chemotherapy.
I would like the following questions answered -
1. Why am I having to bring in my own pressure relieving cushion?
2. Why after 2 years, the chair situation has not changed but my clinical condition has worsened considerably and that the unit is unable to supply adequate care to me to prevent my pain and contributes to the worsening of my spine as the chairs do not support my back and I can feel my spine crunching when I move my arms? It is putting me at risk of pressure sores and as there are no foot stools I always go home with swollen ankles.
3. Why are there such unacceptable delays between seeing the consultant and actually having the chemotherapy. Today, I was the last one into the chemotherapy treatment area and my treatment was made up a long time after others who saw the consultants after me. I was told it was done in time order but this is clearly not my experience at all.
4. I realise the nursing staff are very pressurised and I am constantly amazed by how cheerful they are and they keep working for your Trust but increasingly, I am finding them unsupportive towards me by saying that it is because I have late appointments so what else could I expect. As I explained once in the system it is almost impossible to get an early appointment. I feel unbelieved by the nursing staff that I am in pain and am offered no support from them or help to relieve my pain. The people who try to help me are the receptionists and research nurses. I get no help or support from the Breast Care Nurses and the chemo treatment nurses are too busy.
5. I do not understand why it takes pharmacy nearly 4 hours to prepare my chemo and yet others are prepared much quicker.
6. I have not had a break from attending this thursday clinic since my diagnosis in April 2005. The longest break I have had has been 4 weeks and some of this has been due to me being in hospital or the hospice. Even when I had 9am appointments, I was often not leaving till after 4pm and the situation has worsened. Why are clinical needs not taken into consideration in allocation of appointments?
7. I see other women there who look in pain and are also waiting for as long as me. Why are we not given priority when we have other health issues to contend with? Why when we are far sicker when we have developed secondaries are we put further down the pile of priorities when the women with a primary diagnosis are given priority in pharmacy and treatment area so receive their treatment quicker even though they are not as ill or in pain.
I await your reply with interest.
Yours sincerely
Kathryn T

I'm just too disillusioned to write more - but I am sure I've written on this blog and the forums about my awful days at chemo so there's loads of ammo but I'm just too knackered to write a better complaint. it's not to my usual standard of writing I know. If you feel you could fire off a quick email to one of the following people please can you. I can not fight this alone any longer and just do not know where to go for support and help. I was told by the Chairman of the Trust Board that the Chief Executive, Mark Hackett wants to know the problems in the hospital and is happy to receive emails. Ideally, I would like to multimail him and fill his inbox but that does not seem right but even the Chairman knew about the problems in the chemo unit so why has nothing changed?
Even if you feel you can only copy and paste my letter to one of the people below I would be grateful for your support

John Denham - MP -
john@johndenham.org.uk

mark.hackett- chief executive
mark.hackett@suht.swest.nhs.uk

LesleyHobbs - complaints manager
lesley.hobbs@suht.swest.nhs.uk

When I got home the heating and hotwater now work but we needed a new thermostat and timer so dread the cost but also got a letter from the benefits people who want me to send off various paperwork to a local benefits office to process my employment suppost assisatnce money. I really don't want to send off my birth certificate etc. just wish I could go down there instead. Still gives no idea how much money i will get or when I will get it - just keeps saying it will be backdated to 19th january and so can't apply for grants etc until know what this is and tax credits won't do anything until get final payslip and they think we;ve ernt too much in this tax year but will get more after the new tax year in april so will be living off fresh air then.
So unhappy tonight.

Trust Management Offices
Mailpoint 18
Southampton General Hospital
Tremona Road
Southampton
Hampshire SO16 6YD
On a slightly different note, the registrar asked if she could talk about me to medical students and GPs to show that there is life after a diagnosis of secondaries although she did say I was rather at one extreme as regarding what I did and how much chemo i had. Oh well, as my school best friend recently quoted from Lady and the Tramp "sure - always glad to oblige"!!!

2009-01-21T15:55:00.003Z

Plumbing and the man who lived here previously

Oh how I'd love to name and shame the man who lived here before us. I really feel I could thump him if I ever see him again. I did see him about 18 months ago but it was at a funeral so I could hardly thump him then.

As you know we've had problems with the heating since New Year's Eve but the plumbers were so slow at submitting the quotes but eventually I got 3 quotes and this monday the Hospice gave me a cheque to pay our chosen plumber. Luckily the plumber rejigged his work so he could come over first thing on tuesday. True to his word, he did turn up and the changing of the valve went smoothly but then..... you're thinking surely this didn't go without a hitch and, yes, you are right it didn't!!!! Then when he tried to get the timer to work it wouldn't and when he looked at the wiring of the controls he found a blue wire hanging loose!!!!! He then spent the afternoon trying to sort out the wiring and failed. So he came back today with his son and spent this afternoon trying to fix what the plumber who came out on New Year's Eve did to over ride the system so we had heating. It is still not right but at least we've got heating and hot water tonight unlike last night when it was all switched off and we couldn't get it back on. he's back tomorrow so let's hope he can fix it. I'm just not sure how long we give him before calling in someone else!!
Will try to post tomorrow about chemo and heating - bet you can't wait!!

2009-01-21T15:43:00.002Z

Things That Make Me Happy
I seem to have written so many depressing things lately I thought I'd try to write a happy post before I go back to depressing reality.
I'm not going to include friends and family in this list as I hope you all know how happy you all make me. Thinking about this list made me realise although I strive not to be materialistic I am a 'material girl'.

my ipod
my nintendo
my wheatbags
my V pillow
cups of tea
chocolate
wine
sherry
dragonflies
penguins
the colour turquoise and purple
my cheap jewellery sets from Avon, Sainsburys. Tescos etc
My sentimental jewellery from my hubby
my charm bracelet as each charm has a special meaning and often came from when I had the money to travel abroad
watching the birds in my garden
watching the change of seasons and different colours in my garden
the internet - especially Facebook and the various forums
music
kisses and cuddles (I know I said I wouldn't include friends and family but AJ just gave me a big hug and kiss)
defying the medical profession big time!!!!
my cross stitch
talking

2009-01-16T14:26:00.006Z

Emotional Rollercoaster and Surprise Holiday Booked

It has been an emotional time for me since before Christmas and seem to have cried most days. I think Christmas and New Year often brings back memeories as well as looking forward to the New Year ahead. When my immediate future is in doubt, it makes it hard for me to make plans ahead and everytime I do some sort of milestone activity, I think is 'is this the last time I will do that' and that makes me tearful. It is also so mind blowing that I will never work again and claiming benefits for the rest of my life.
I've spent this morning trying to sort out insurance for my debts on my credit card, phoning working/child tax credits, benefits people, the airline and GP surgery and not done the things I was planning to do like my biography scrapbook. Time has flown but then the carer has also been here as has the assessor from Warmfront. Pete and his friend have been upstairs working hard. Pete has been insulating and boarding out the loft and his friend has been adding new doors at the top of the airing cupboard so the next step is to put a shelf there and then we have somewhere to store sleeping bags etc. It's been a busy, noisy and dusty day.

It's been so frustrating dealing with the Government Departments. Apparently, we've already earnt over the threshold for this tax year for free school dinners, council tax relief and free dental and eye tests but from the new tax year we will be entitled. Then the working/child tax people said Pete would be better off working just under 16 hours even if 15 hours and 59 mins as would get more money from them but the benefit advisor I saw last week said hubby needed to work 16 hours to get more benefits. Glad I've made another appointment with the advisor on tuesday. Phoned to see if could register for 'Employment Assistance Support - the new name for Incapacity Benefit and was told they could send me out a pack as was still counted as working for today but if phone on monday then can apply on the phone!!
Still waiting for the heating to be fixed. Although Pete took the quotes yesterday morning to the hospice and left them with the receptionist, by lunchtime today, they still hadn't reached the social worker at the top of the stairs as she phoned to find out where they were. By the time she'd got them then the grant office was closed so this will be dealt with on monday now. At this rate, Warmfront might be quicker.
The airport assistance person was very helpful on the phone and so now know that we need to get to the airport about 7am and then a wheelchair etc will be organised for us to check our luggage in and they will look after us and make sure the same happens in Paris and on the return journey. Air France were happy for me to take an oxygen cylinder on board the plane but the flight we're booked on is a subsidary and they're not so if run into problems will have to use the plane's oxygen. Got the insurance through today so my health is covered once we're off the ground but can't cancel due to any cancer related illness without losing the whole cost of the holiday. Have got to get the GP to write in my notes that I'm well enough to travel . I'm seeing him on 21st so hope I remember to ask!!! I've also asked him to write a letter to say I need to carry my whole bottle of oromorph, all my other medication and AJ's sennakot plus my needles for my longline etc. It just seems so much to remember to do and organise and fit into my hand luggage.
I've just realised that I haven't actually said where we are going and what sparked this off.
Last sunday night, when I was denitting Laura's hair, she suddenly said 'Mum, I don't mean to be horrible but life will be easier when you're dead as sometimes you are a burden to us and we can't get on with things'. It was so hard not to cry. I don't think there was any malice in her words. I think what she was trying to say was that it was OK for me to stop fighting and that they would cope without me. We discussed how difficult it had been for us all in the last few months especially when I was so ill in November and nobody (apart from Peter) thought I would live. I told her it was difficult for me as well as I also didn't know when I was going to live or die and my emotions were all over the place. I just had to put a brave face on then and did the usual bed routine with the children and then went downstairs and cried with Peter over what she had said. It made me think about how I was living at the moment and my motivation to keep on fighting (hate that word when linked to cancer). I didn't really come to any firm conclusion but felt that she had given me 'permission' not to worry about their future and that when the time is right, I don't need to worry about them. Somehow, this made me think about what I wanted to do with my family and as all the children keep on about going back to Eurodisney Paris, I decided I would look into the cost and how disabled friendly it was. Peter was not keen on going and I couldn't really go on my own so my mum had said she would come with me. I talked to her on the phone and plucked a few dates and went to the travel agent. She found a brilliant deal where we are flying from our local small airport and then there will be a shuttle bus at the airport to the resort. As there are 5 of us, we are staying at the same hotel as last time which is what they wanted as it has an indoor swimming pool so I can have a rest/sleep and mum can supervise them from the cafe area. There is a separate room which comes off the main room with a set of bunk beds in and then a double bed and 2 single beds in the main room. I'm not sure how we will sleep as I think the twins will want to be in the bunks and AJ will not be happy with being in the same room as me and Grandma so am wondering how heavy the mattress is and whether to put a mattress on the floor in the bunk room so they can all be together as really neither mum or I can go on the upper bunk and from what I can remember we are too heavy anyway. I thought we would have to go to Ashford to get the Eurostar as that is usually the cheapest option but infact our local airport has worked out cheapest and it will be easier to fly as once we've got the suitcases out of the way, it will be easier to carry handluggage. the only problem is about carrying drinks on the plane so will have to buy the water once we're through the security part but it will still be cheaper to buy water there than at the French hotel and we'll have to pack some sort of snack food in the suitcases as well. We're going for 4 days and have park passes for 4 days and staying for 3 nights. I wanted to stay for 2 but it is cheaper to stay for 3 nights but of course it will be a lot more expensive as we need to buy more food and meals. As we will be arriving at lunchtime, we will be able to go to the Park then and have a meal and spend the evening somewhere or at the hotel. It will be thank goodness for Nintendoes I think. I've bought one travel plug but wondering if should buy another one. We are coming back late on thursday so again can spend the morning at the Park as I don't think we can go swimming then and I don't want the hassle of wet towels and suitcases.
I know I can hire mobility scooters there and how much it will cost so that will help me as the Parks are too big and hilly for me to cope. I don't know what rides I can do but I do want to do some and hope my back stays intact.
Not sure what I'm letting myself and everyone else in for but it was a spur of the moment decision sparked by Laura's comment.
I don't want the children to know in case something happens to me and we can't go and now of course, Pete is sad that he is not coming.
At least this time, the children are more adventurous with the food they eat so that won't be such a worry or expensive as last time as none of them would eat the croissants or pain au chocolats at breakfast so they started the day being hungry and they hardly ate anything at the Character Breakfast. Hopefully, AJ won't be afraid of Captain Hook and as we have a better camera we can take some better photos.
Emotionally, have mainly done better once the shock of Laura's statement wore off and infact now, feel much better and almost relieved that she said what she did.
The twins and I watched Mamma Mia tonight whilst AJ and Pete watched The Hulk. I really enjoyed it apart from it making me cry when Sofia asks her mum to help her get ready for her wedding. The twins couldn't really understand why it made me cry and as they asked me I had to explain that it upset me as I wouldn't be around if they get married and it upset me. Apart from that we really enjoyed having the sing-a-long version on the screen so we could sing too.
AJ bought his book home that he has been working with his emotional literacy assistant. That was quite revealing and helpful to me. It did show how aware he is and how that he feels he has got people he can talk to which is a relief. I've just realised that if I get to May, then nearly half of his life will have been overshadowed by my cancer and if you count in the time his cousin had cancer for before she died then it will be over half his life. Poor thing - what a horrible beginning to his life.

2009-01-12T04:34:00.004Z

The Weekend
Luckily or so it felt, football training was cancelled as the pitch was solid so could get the lie i that I wanted.
So amazingly cold and icy here. Makes the garden look beautiful but it is too cold for me to venture out really.
I did meet up with some other 'younger women' with breast cancer in Benny's and Frankies. Good place to meet as food was delicious but again the background noise does interfere with conversation. As there were only 7 of us we managed to get a round table which was good. We discussed how we could meet but not to have lunch out all the time - we called the next meeting a credit crunch one so that we just meet in a pub and so people can eat if they want to but otherwise just have a coffee. I know I put the date and time in my diary but not sure about the name of the pub and where it is though. at least, i've got their number so i can contact them.
While I was getting ready to go out, hubby was telling the children to get ready to go 'wodgy hunting'. It seemed to take them ages to get ready and in the end, poor hubby had to get them all out the car again as AJ was taking no responsibility for himself in getting ready and hadn't packed his gloves. Tempers soared and it was very unpleasant but AJ is not pulling his weight and not taking on the responsibilities that an 8 yr ols should be able to do, like finding his gloves, hat and scarf.
We try not to treat him as the youngest but he does like to play on it and use it to his advantage. So he'll make himself a sandwich and do his breakfast cereal as he is hungry but won't help me as he says everything is too difficult for him at his age. This tends to be things like helping me unload the dishwasher or helping sorting out the never ending pile of socks and underwear!!!
The HR department did send me the right form with a date on so I can claim benefits from next saturday. Now we know it's going to happen, it would have been better to finish yesterday so we could start claiming now rather than wait before we find out how much we'll get.
After returning home after my lunch out, Lady Hamilton came round to sit in my Lloyd Loom chair and chat. It was bliss as I was so comfy in bed and we could chat without being interupted by the children and that was the idea of decorating my bedroom into a sanctuary after all.
Then spent the evening watching Harry Hill etc and other game shows so good family time together.
sunday - hubby took them all out swimming. One of my friends came round just as they were returning so that Laura could get her christmas present from her daughter and again, we could use my sanctuary as a place for private conversation. Whilst I was chatting, one of hubby's morris minor friends came round and AJ then went off to his friend's house leaving Woody to play xbox games with my friend's son and Laura playing with her daughter - they're at the same school anyway.
This evening, the twins both did their homework but it didn't occur to me that AJ hadn't done his till about 11pm so will be a rush in the morning.
Have arranged to stay with my sister - well most of us will stay in the local Premier Inn but you can see what I mean so we can celebrate 2 of her daughter's and my birthday. Looking forward to going away and hoping I can meet a cyber friend who lives near her, so she can turn into a 'real' friend!!
Swallowing is definately better after that one dose of taxol on thursday so hope it continues that way and can stay on this weekly taxol for longer than the end of the month. My main problem is that the long acting morphine is not helping as much as it should with my back pain so will have to ask about increasing the amount of MST I take. It's all the crunchy noises I don't like - I can cope with the pain but the noises and the way it is affecting my mobility is more difficult.

2009-01-10T23:32:00.003Z

Meeting Friends
I got woken up earlier than I'd expected to on friday as I forgot the carer was coming so early to do the domestic things. I got her to clean the fridge out as it was a bit of a health hazard!!
I eventually got going and went out via Tesco Direct to collect some photo frames and Laura's rucksack for school. The boxes for the frames seemed huge so was worried about what exactly I'd ordered!! This made me late leaving for my friend's house and then I had to stop to get petrol so got to her house about 30 minutes late.
It was lovely to see her again and we had a good chat before a wonderful lunch of soup, salad and bread. I found already that my swallowing felt better so hope to prove that oncologist wrong and that taxol will continue to work for me.
Their garden was beautiful with all the frost that was remaining clinging onto the trees and euphorbia. The ice was so thick in places. The wheelbarrow was full of frozen ice. I wished I had Pete's camera as there were almost icicles hanging off the trees and bushes and it looked as if it deserved a photoshoot.
About 4pm when I was thinking about leaving I just couldn't keep awake, I could feel myself nodding off. Eventually, I just gave in and laid on the settee with a lovely cover that my friend brought down and went to sleep for the best part of 2 hours. I felt a lot better when I woke up but quite embarassed as well, as you don't normally expect your guest to fall asleep when you are talking to them!!! I suppose it was a lot to do for the day after chemo and the day I had yesterday. I hadn't driven that far (about 15 miles) but further than I normally do and on a motorway so it was requiring more concentration than usual. I didn't get home until about 7pm.
Played on the nintendo ds lite for about an hour with the children.
I tried to send an email which took me about 3 hours as kept falling asleep at the laptop. Then when I did settle, Woody came in as had had a bad dream. He is so still when he cuddles into me and so different from the continual activities that is AJ. I was trying to distract him and talk to him but the words that kept coming out were so diffferent to what I thought I. I asked what I was saying but all Woody could tell me was that it gobblegook which I called goshbosh and was talking about casserole dishes as well. Eventually, he settled and went back to his bed and I continued to sleep.
At least, it was now the weekend so I could sleep in longer the next day.

2009-01-08T23:44:00.004Z

8th January - Got the taxol
It's been a long, painful and tearful day and as didn't get high dose steroids until 6pm, feel all high and anxious now but very sleepy so won't be a long post.
Started the day off by seeing the benefits man but still didn't know if my last day of pay would be 9th or 16th January. He's advised what benefits etc to apply for and so now need to start the process off as found out half way through day that last day is 16th january. Never claimed for this sort of benefit before and got to sort out payments for mortgage. Quite scary not to have a job and never will again.
Just about got back when the hospital volunteer driver came to take me to the hospital. He was a really sweet man and we sang along together to songs on Radio 2 on the way to the hospital!!!
No bed again and back really painful and couldn't get comfortable so had to hit the oromorph early and just burst into tears. There were no spare seats and was actually more comfortable in the wheelchair as has higher back to it.
One of the consultants saw me almost immediately as I was so upset which was kind but didn't speed things up as never started chemo till about 6pm!! There were 65 women in clinic today and usually see about 45 and only 3 nurses to give the chemo and 4 doctors.
This consultant was the one I saw in Sept 06 and said I would only live 3 months or might get to 2 years so have passed both these milestones if that's the right word. He said that I had only a small degree of bone marrow involvement and was a comment a haematologist had made by looking at my blood so not to worry.
I told him about my swallowing and he just felt that wasn't a good sign if it could get that bad in 4 weeks. He also felt my lump on the right side had grown but was happy for me to have the next 4 taxols and more if it works but he has low expectations of it working at all and said I am very frail. I don't consider myself to be frail but later when I commented on how heavy my bag was, the patient holding it for me said it wasn't so must be very weak!!
He was surprised about my suggestion of vineralbine but said they would all be supportive if that was what I wanted to try after taxol but really I should be considering if I want to end my life with all these medical interventions. I think I do as the awfullness of not being able to swallow and the distress it causes me and the family is not a future I want to contemplate. He suggested that I could have a 'peg' feed where a peg is inserted through the skin and you are fed through the tube it attaches it too. That would be a better option as it would help me not to lose weight so dramatically and stop me being continually sick.
We talked about whether I had truly accepted that I was dying - he seems obsesses about this as we talked about it last time as well. I feel I have as much as it is possible to and said I can see a time when I want to stop treatment and just let nature take its course but at present want to continue with treatment as my swallowing improves and so does the quality of my life. He does not want to do scans and I also don't see the point as they are not going to change the treatment plan and they can monitor if the chemo is working as they can measure the lump and I know about the swallowing.
My echo came back as that my left ventricle which is the main pumping chamber is sluggish but with a heart rate of 100, I'm not sure how you can have a sluggish but rapid heart rate!! The heart function has actually improved and is now 60% so the water tablets must be doing their job and removing the water away from my heart allowing it to pump better.
We also discussed the steroids and I'm going to try at 1mg for the week as my skin is bruising terribly and breaks down easily and see what effects it has on my breathing. The steroids are supposed to stop the inflammation caused by the cancer in my lungs but longterm side effects of steroids are not nice so would rather be off them.
I said I wasn't interested in a ct but felt either I've got further lymph spread in my tummy which is why I have so many bowel problems or I asked if the nerves from my vertebrae in my chest area could be squashed and that is causing me problems and he said he didn't know.
He showed me my chest xray from 18th December and you can clearly see that that T5 has collapsed now and is under half the size of the surrounding vertebrae so that is why I hear that clicking and get the pain and muscle spasm. Just waiting for the rest to go now. I know it has worsened in the last 2 months as my stoop has got worse and when I was looking for something from the top shelf in a shop the other day I had to get someone to get it for me as I can not get my head back that far.
By the time we'd discussed this and he'd examined me and I had stopped crying, my friend, Debbie had arrived so we discussed the morning's events and she went and bought me lunch and a large paper cup of tea. We sat for a while and then we had a look around around the shops at the hospital and I bought some liquorice and some seed collection to eat. Will have to make sure my seeds are kept away from the bird seed!!!
Debbie had to go about 345pm and I moved down the waiting room to be closer to the other women waiting for their chemo. I got very tearful at that point as I was in so much pain from my back but also from my bum and could almost feel the pressure sores returning.
Eventually, I got into the treatment area at 430pm so I could lie on my side and then they didn't start the chemo till nearly 6pm so had a big dose of steroid then hence why I'm awake but sleepy now.
I left at 8pm and got a hospital taxi home and then did the usual bedtime routine with AJ and we had a giggle with reading Roald Dahl so it seemed 'normal' again.
Couldn't face dinner so had porridge again - don't know what I would do without porridge - it seems to be my staple diet.
Pete found my Nanny's Lloyd Loom chair and as it is a dark duck egg blue it goes beautifully in my room so really pleased I persuaded Pete to keep it all those years ago. Now visitors to my sanctuary have a better seat to sit on.
Loads of phone calls to make tomorrow and having lunch with friend and seeing a plumber for a quote.

2009-01-07T16:11:00.002Z

NO PAY
The manager has just been to see me and as suspected, the company are now refusing to pay me from this week so had no notice this was going to happen until 1 hour ago and she knew before christmas!! Can understand why she didn't want to tell me but now got no time to organise things.
Luckily, got appointment to see welfare/benefits people first thing tomorrow.
Don't now whether best to apply for ill health retirement but that leaves the family worse off in future and will stop us getting benefits now as will have 'savings'. mamager going to find out if we apply for retirement then they may have to pay me for next 8 - 12 weeks due to annual leave and months notice. Manager not sure if she can keep my contract open so that I die in service which is the best pension option.
Works both ways - if get benefits then certain insurances kick in and may be better off and won't pay council tax etc, free school dinners or could be worse of.
Pain and tiredness really bad today so off to bed now.

2009-01-06T23:18:00.001Z

How Truthful Should I be with the Oncologist on Thursday 8th Jan 2009?
I'm sure I really know the answer but would like some advice how to handle my consultation with oncologist on thursday.
I started weekly taxol mid august for 18 weeks. Due to various hospital admissions with infections and now christmas/new year still have only had 14. Last one was 4 weeks ago on thursday.
In that time off, my solid tumour has regrown and my swallowing is becoming difficult and painful. Last time when i had 3 weeks off and I could feel my swallowing getting worse, he was reluctant for me to continue with the taxol as he said it wasn't working. This is my last chemo option so by not having it I have nothing left and will be dead in under 3 months so want these last 4 to buy time and hope that he will relent and let me have vineralbine again.
However, saw last week on GP's computer screen that I now have bone marrow infiltration - I suspected this as my iron levels keep dropping and my wbc counts are slow to come back. I'm angry as have always asked for the onc to be honest with me and withholding this info is important because as far as I can see this shortens my life even more.
If I don't tell him about my swallowing then i think he may suggest having a break for a few more weeks which by then I'll be back to pureed food. My breathing is still Ok and skin mets have not returned and lump in armpit has only grown a little so it's my swallowing that is the issue.So scared now as really feel I'm approaching the end so fast now and yet apart from my swallowing and my spine constantly clicking and causing intermittent excruticiating nerve pain, I'm quite 'well'. I can keep going all day and have steroid induced energy but can't use this energy to any useful activity.
Any ideas how I should approach thursday as I feel the onc wants to finish me off quickly so need to be strong. It's my birthday at end of month and want to go out for nice meal etc and go away for the weekend and feel this will be impossible without further chemo?

2009-01-03T10:45:00.003Z

New Year
Although the party started at 6pm, and we were aiming to get there for about 7pm, we never got there till about 730pm. It was lovely just to go a few doors down the road to a party. I enjoyed my self and caught up with quite a few people. The children just disappeared and played upstairs or watched DVDs in the lounge.
I managed to stay up later than I thought and it was AJ who wanted to come home forst as he was tired so Woody, AJ and myself came home about 1130pm and AJ went to sleep. Laura and Pete were eating the chocolate and creamy puddings so came home about 15 mins later. We watched telly and took pictures of the 4 of us in bed and when it came to midnight we all held hands and wished each other a happy New Year. We couldn't manage first footing but let the old year out and the new year in, which Woody thought was very peculiar.
We did manage a sleep in the next day and had a late breakfast and then I cooked a roast dinner. I hadn't planned to cook the dinner on my own but Pete got caught up with other things.
As New Year's Day was thursday and that is a day that Pete works, in my brain it was friday so have been confused since then which day is which.
On friday, I went to Sainsbury's homeplus shop and managed to find a few bargains like some garlic infused olive oil for £1.71 - the drop in VAT has led to some very strange prices and I also bought a few 'standby' presents incase I forget birthdays etc so if you end up with a strange birthday present then you know I forgot and had to go to my special store cupboard to find something quick!!!
My swallowing is becoming a real issue now with bread and meat being a problem. It is only 3 weeks since my last taxol so it's not good. The pain in my chest has come back and is there constantly and I can feel some food getting stuck there as well. My breathing is fine which is a relief. The other thing that is getting stuck is the stairlift. It seems to go too far off at the bottom end and when I try to go back upstairs, I have to get off and then press either the remote control or the button on the chair to get it to move a few inches and then I can get back on and off we go. Although the other day, it got stuck halfway up the stairs which was a bit disconcerting and very noisy as it beeps continously if not at the top or the bottom and if you turn the power off, it just carries on beeping. I tried to ring the company but they were operating an emergency service only and I can manage the stairs but it wears me out so will try again on monday.
The children seem to have grown so much over the last 2 weeks but on checking their shoes, it was only AJ that needed new trainers. we had to get him lace ups so Woody has been trying to teach him the art of shoelace tying.
Pete took the children out on their bikes and a walk around the local country park and seemed to enjoy themselves. It was so cold they didn't stay out long.
Saturday - our friends who had moved in the summer came over to visit for an hour. It was good to catch up. I had spent some of friday night trying to download photos from my phone and camera onto the computer and then trying to burn a CD so I can get the photos printed. Somehow, I managed to get 4 copies of some photos on the CD and back to the camera so do need to sort that out. I'm very reluctant to delete any until I have a usable CD. It seemed to transfer some pictures but not all and then the other vista computer wouldn't recognise any of the CDs. I went to the local photographers and actually spent an hour there using either the memory card from my camera or the USB connection from my phone to get some photos printed. I then tried the discs and found that the kiosk could open my saved photos that must have been on the SIM card in my phone so I could get the best of them printed off and some from the camera and some of the new phone ones so am very confused by all this. Will have to wait till monday to see what the photos are like. Some of the phone ones look very pixelated. I'm sure I went to Boots and got better prints so will give the local one a try first before venturing into town and Boots.
I then spent the rest of the afternoon baking with Woody. It was not entirely successful as the buttercream separated - I've never put egg yolks and boiled sugar water in buttercream before but the swiss roll/yule log rolled up perfectly. The meringue nests refused to come off the baking tray and the chocolate chequer board biscuits' dough went too wet and so we ended up with a marbled effect biscuit. They are very tasty as all the cakes - they just don't look right!! Woody is very proud of his achievments so have taken photos so he can show his teacher of what we cooked.
Now am up to date with my blog and must go to sleep. My sleep pattern is all over the place so think it will do me good when they all go back to school to get back to a better routine. Sometimes I think I stay up late at the moment so I have a bit of peace and quiet when I'm writing and also I feel that my time is so short now that I don't want to 'waste' time by sleeping. I'm also struggling to go to sleep in the dark and keep the dimmed light on and I don't know where that fear has come from either. All in all I feel like that proverbial duck swimming against the tide.

2009-01-03T09:45:00.005Z

Faulty Heating and Sleepovers and Pain
Monday 29th and Pete went back to work. I had to get up early due to the carer coming to help me shower. Mum helped me get the room ready for Woody's sleepover tonight and we did loads of washing between us.
Woody's been to so many sleepovers that I felt really guilty so 2 boys are coming over late afternoon and going home earlyish tomorrow as it is my hospice day.
I don't know whether it was the driving or whether I carried something heavy or overstretched my back when I was sorting out the airing cupboard but by late afternoon, I was in agony with my back/shoulder. Woody had come shopping with me to buy sweets for the sleepover and carried everything and as we only went to Woolworths and Superdrug to look for and buy bargains so the shopping wasn't heavy and I know Woody carried it as he won't let me do anything that he thinks will hurt me or make me tired. He is so bossy with me about what I should and shouldn't do. By mid-afternoon I was in agony with my back and shoulder and it got to the stage where I was taking 2 hrly oromorph plus diazepam and it still wasn't helping so I made an appointment to see the doctor for when Pete was home.
Mum left for home about 230pm and one of the mum's dropped the 2 boys off at 4pm. Luckily she was free so once Pete was home, she could drive me to the doctors and stayed with me at the surgery and brought me home again. The doctor thinks it is a muscle spasm caused by the nerve irritation in my spine and couldn't really suggest anything more than what I'm doing already using heat, massage and taking painkillers.
The thing that upset me was that I noticed on the screen was that the oncologist had told the GP but not me that my cancer has now spread into my bone marrow so that is why my iron levels keep dropping and my white cells are taking so long to recover. I keep asking him to be honest with me and he is blatantly not doing this so will have to enquire about this on 8th. I'll have a huge list of questions and problems to discuss by the 8th!! This bone marrow infiltration as it is called, I think explains why he won't commit hiimelf for me to have the 4 remaining taxols from 8th January onwards. It is now 3 weeks since my last taxol and already I can feel my swallowing is painful again so it will be 4 weeks when I go next week. I think he wants to see what my iron levels are like before he will give me the last taxols. I've seen women in much poorer health than me and continued with chemo so feel I can push for this and then the vineralbine.
When I got home, the house seemed cold and realised that the heating hadn't come on. It's been playing up for a while but usually I could trick it into coming on by altering the clock. This time, nothing worked so we had a cold night but at least we had hot water.
The boys were good and played xbox games etc and dvds and settled about midnight so weren't a problem for me.
Tuesday - heating is back again - hurray!!! It was a bit of a rush to get everyone ready for the mum to collect everybody at 1oam. She also took my lot to the childminders so thank you.
The hospice was freezing so didn't warm up there either but at least my pain had gone. I left the hospice and had a quick look round Marks and Sparks. I suppose all the good sale stuff had gone by the time I'd got there so it seemed disappointing.
I collected the children and went to bed. The heating had obviously been on at lunchtime so wasn't ready for it not to work again tuesday night so another cold night. Tonight, Laura was having a sleepover so hoped that they wouldn't be too cold.
Laura and her friend got on so well - it was lovely to see them play and enjoy each other's company so much. They are at different schools now so it seems important to keep these old friendships up. They were cold so had the fan heater and we had the electric radiator. The hot water was also running out which was strange as before that we did have hot water.

New Year’s Eve
I’m not sure whether I was just overtired when I woke up or if the stress of Christmas and the thought of New Year and how it made me feel looking back and wondering how long my future is but I just burst into tears so easily today.
I woke up at the time I’d asked Pete to wake me up but I should have got up earlier as I was just tucking into my porridge when the district nurse and the carer who was doing my shopping arrived. I also realised that the heating hadn’t come on and how were we going to find a plumber today to come out and fix it. The house is so cold unless you are in the room with the fan heater or electric heater in.
Poor Laura’s friend was really cold and I felt so sorry for them. They eventually got up, ate their breakfast and went back to playing again which was brilliant to have to do nothing for them and to hear them play so imaginatively together.
I had the chatty district nurse today and a new district nurse who was coming out to see the way my long line is flushed and dressed and they were very good with the hysterical sight that I had become and whilst the main one got on with the flushing etc, the other nurse was trying to track down the hospice community nurse to see if they knew of anybody or way of getting our heating fixed or anybody who could lend us heaters etc. They were told that British Gas would make me a priority and would see me today but when Pete phoned them, he was told there were lots of priority cases and they may not come out today and the friend of a friend was away so felt we were not going to get sorted out. That made me more upset and then the carer who was doing the housework arrived and AJ had hysterics about the fact she needed to hoover his bedroom. I managed to distract AJ by getting him to get his scrapbook/sticker book up to date for the hospital which worked so the carer was able to get in and hoover and now the bedroom is tidy again.
The boys had had some tinsel in their room which had extra leaves in it and all the leaves keep falling off. Pete spent ages yet again moving little bits of lego etc off the floor and moved the mattress on its side so she could get in. Just as the carer came back with the shopping, there was a huge cry of ‘help’ from AJ. We dashed out to the kitchen but could see before opening it that the kitchen was full of really thick smoke. I went in, followed swiftly by Woody who was telling to go away as the smoke would damage my breathing but I had to go in as he can’t open the windows yet as he is not tall enough. We opened the back door but left the microwave shut but luckily, it wasn’t on fire. Poor AJ had got confused with the timings. He is used to making himself hot chocolate and warming my heat bags so put the timer on for 3 minutes. He was so upset by all the smoke and chaos he caused by this but I just felt guilty I hadn’t supervised him. The microwave works even if it does smell so that’s ok.
Luckily, Pete’s dad knew a plumber and he was able to come out to us almost straight away. That meant we had to unload the airing cupboard. Someone had very kindly folded all our bed linen and towels and commented on how many we had. This gave me the opportunity to sort through and despite throwing out about 10 towels and 10 really old scrappy sheets, when we repacked the airing cupboard later, it looks no better but I’ve separated the single sheets from the double sheets. I had no idea we had so many single sheets and all in a disgraceful condition that they can only be used as rags. I think I’ve still kept some towels which should be thrown away but I’m worried incase we need them if I get really ill at home etc. There is a charity for the homeless here but I think the sheets were too old for them and the towels, I’ll have to relook at, as some of the towels I’ve been using lately so surely they can‘t be that bad!! Laura did not want 2 of her old duvet covers and AJ let me take a couple and I will sneak a few more away as well as they are in good condition and can go to the charity as well. Then I’ve got to find the energy to take it down to the charity as I don’t think they will come to us unless we are getting rid of furniture.
Pete had a headache all morning so wasn’t the best of company which again didn’t help my mood or the children’s.
Eventually, the plumber and carers went away and we could have lunch in peace except I got all tearful again as somehow we got onto the subject of divorce and the children couldn’t understand how people fall out of love and split up. That made me really tearful as Pete and I had plans for when the children would be old enough to be left on their own. These were things like walking the coast to coast route over the Penines and travelling. I also had plans in my head like going on holiday with my sister and my friends - not sure what plans they had!! Perhaps they didn’t want to go away with me anyway!! All these thoughts of having no future made me cry again. Poor AJ told me not to cry and Woody was telling me to calm down so I didn’t get chest pain. That upsets me as well. They are so aware of how my mental health effects my physical health - I suppose it will give them life skills they can use for the rest of their lives. Why do I always look for any positive out of any negative. I’m not sure if it helps me to accept where I am or if it is just a way of burying my head in the sand and focus on the ‘good’ rather than the ‘bad’ of our situation.
After lunch, I was very tired and my shoulder hurt so I went to bed and Pete took the children out but not for very long.
Pete made a wonderful sausage casserole and eventually we were ready to go to our party down the road.
I think we were one of the last to arrive. The food was lovely and it was great to catch up with the neighbours. I spent the evening mainly sitting in the kitchen and chatting and others got me food and drink.
Poor AJ got really tired and so he, Woody and myself came home just after 1030pm and AJ managed to stay awake till about 1130am and the he went to bed and I read him a story and he fell asleep straight away. Woody and I took photos of ourselves which I have put on my Facebook.
Laura and Pete came home about 1145pm so took photos of them as well.
It was our first welcoming in of New Year in our house for many years as previous years we’ve been at friend’s houses and the twins have slept over. We talked about New Year traditions like First Footing and Auld lang Syne which they found very amusing. We did all cross our arms and hold hands at midnight and wish each other ‘happy new year’.
This year, there was nobody outside to wave too and toast drinks to. There weren’t as many fireworks as usual either - is this another sign of the credit crunch.

2009-01-02T16:04:00.006Z

Christmas Day to Sunday 28th

The stocking presents luckily kept the children occupied till we got up at 8ish and then all had breakfast. We had to do some furniture shifting so that Pete's parents and us could all fit into one end of our open plan lounge with the stack of presents. Luckily that took some time as they didn't arrive till 945am and then the children dished out the presents.
We take it in turns to open presents so we can see what others have got and a list can be kept so that hopefully, thank you letters will be written.
We all genuinely had lovely and thoughtful presents. I can't think of anything I would exchange for something else and that must be the first christmas that's ever happened!! I got some lovely penguin things and especially pleased with the family organiser wipeclean calender which has penguins on it. (How sad is that??) Since our plans are always changing, it will come in very useful.
Isn't it odd, I got some other really lovely and meaningful presents but a calender is the thing that sticks out in my mind!!!
We also got a lovely birdfeeder cum hanging baskets on a pole which hopefully will only attract birds and not rats or the pigeons. So far a lot of seeds and nuts have gone but it does seem to be the pair of wood pigeons which are eating this. Mum and I drank our way through the present opening with some sherry plus cups of tea. We all ate nuts, biscuits etc so that by the time we'd finshed opening presents at just before noon, we didn't fancy any proper lunch.
The day just seemed to pass in a haze of food and drink but it was a happy day and even though I am very certain this is my last christmas, it didn't have the emotional scariness that last year's christmas had. I would never have believed it last year that I would still be here now or that I would be as well as I am (it's all relative isn't it) and that I would be still able to eat and breathe as well. Infact, my eating and breathing felt better than last year and I really wouldn't have believed that. We did try to take lots of photos to remember the day.
Boxing Day - we went off to Pete's parents for lunch and opened more presents. Pete's brother and his 2 children came over as well so that was good. His son helped Woody replug in the PS2 so that he could at last play his new games. Our PS2 gave up the ghost on Christmas Eve so poor Woody had a bit of a miserable day not being able to play on the games that he had specifically asked for and got. His Nan let him bring the PS2 home with us which was very lovely of her and really make Woody very happy.
We came home early evening as my back and shoulders start to hurt too much unless they are well supported which means usually being in bed.
In the last few days, I've noticed a peculiar cracking noise in my back/rib/shoulder blade when I take deep breaths or move in certain directions. I don't know if it is a ligament or the actual bones. I just know it hurts more than it used to and I have episodes of really bad pain when I'm presuming a nerve gets trapped and it makes the muscle between my spine and shoulder blade go into a spasm. Heat and massage always help with this but if I'm desparate and not driving then I take oromorph and diazepam. It's very disconcerting hearing this noise as I don't know what is causing it and what is going to happen. It will have to wait now till the 8th january when I next go back to the chemo suite and see the consultant.
Saturday - we had a quiet, no visitors or going out day. Well, poor mum had to brave the queues in Sainsburys for extra supplies for when my sister and her family visit tomorrow.
The stairlift is playing up. It seems to get stuck down the bottom. Sometimes, if I use the remote control it will start to move but other times it makes no difference. We have noticed that if I get off the chair and press the button then it starts to move away. Then we have to stop it and I can get on again and use it!!! If you try to switch the power off, the emergency buzzer comes on so that is not an option. It must overshoot the bottom or get stuck on the rusty ratchets, is my diagnosis.
I defiantely feel the stairlift company have given me an old one on purpose as they know it was ordered from the hospice so think they don't expect me too live very long!!!
Sunday morning came and went in a rush. Mum and I went to church and by the time we got back, it wasn't long before my sister and her family arrived. I was in one of my muddly states when they arrived and needed to be told to sit down and not interfere with anything-impossible for me - I like to be in charge and I find it so hard that now not only is my body not working but my brain is having odd moments too!!!
We had Shepherd's pie and spaghetti bolognaise for lunch as I couldn't face another roast lunch especially for 11 people.
We had a children's table and an adult table - Magnolia is an adult of course, even though I still think of her as being 'litttle'. In truth now, she looks after me rather than me looking after her. The children all played well together and helped us prepare things for dinner and for tea later on.
Present opening time again - I'd got muddled over chrisymaspresents and had labelled Woody's prsent wrong on Christmas Day so he was short of presents to open this day but had had an early present. My sister gave me a lovely penguin shaped purse and wallet as well as other lovely things.
I think we all got more emotional on this day than any of the other days over christmas.
After lunch, Magnolia signed me up for Facebook and loaded the Goodwood revivial photos onto it so now have to wait and see what happens next and if anyone wants to be my friend!!! It sounds so childish to 'invite ' someone to be your friend!! It reminds me of school when we would break away from one group of friends and join another. Usually this happened after some sort of childish falling out over something. I think one occaion was when my best friend out that although I still liked the Osmonds, the Bay Bity Rollers were also important to me and I had both sets of pctures up on my bedroom wall!! Once, we'd changed friends in secondary school, we'd try to run away and hide so we didn't have to share our sweets with them!!! My secondary school had huge grounds which went from the new part of the school at the top of the hill to the old rambling bits round the old part of the school so there were plenty of opportunitis to hide away, play hide and seek and those that did, smoke!!!
Back to 28th - I'd eaten such a big lunch that I felt quite unwell so ended up taking all my best clothes off and hanging arond in my nightdress and dressing gown. They all went home about 7ish and Iwas exhausted.
I thought I'd have more energy off chemo but just don't seem to feel anymore energetic at all.
We missed Pete's nephew 1st birthday party today which was sad. It's impossble to be in 2 places at once though so hope they all had a good time.

2008-12-30T01:02:00.004Z

Christmas Eve

This was the first time that Pete had been off on Christmas Eve for about 5 years so we decided to follow his family's tradition of having our Christmas dinner on Christmas Eve. It worked out really well with our wonderful Waitrose chicken breasts, gammon and duck with the orange sauce that I just sort of made up. I didn't do all the cooking - the idea was that I supervised or gave advice but of course, me being me took over at times!!

The table looked wonderful and we even got my Christmas wreath with a candle on the table. We used our penguin tablecloth and still had some penguin napkins left over from last year. As we were all going over to Pete's sister,s late afternoon, I was the nominated driver so sadly only had a sherry and wine!!! Laura got a lovely notebook collection, AJ got a wonderful blue top to match his blue eyes and Woody got a Saints mug. Pete and I got 2 big mugs - mine with a penguin on and with hot chocolate sachets inside and sweets so we were all happy. It was lovely to go out and be sociable and know that tomorrow, we can stay in for Christmas Day so drink what we like and the children can play all day.
As it was christmas holidays and I wanted mum to be able to stay with us so she could drink with us and not worry about driving back to my in-laws to sleep, we'd got the mattress down from the loft so all 3 children were in the boys room and Mum had Laura's bedroom to call her own. It worked quite well but is only practical during school holidays which is a shame.

Changing our Christmas meal to my Hubby's tradition, made me think about my childhood experiences of Christmas Eve. It was always full of expectation and it always felt it wouldn't be Christmas until Nunky Noo (my paternal uncle) turned up and Nanny (maternal grandmother)came over for our evening meal - in later years it was fisherman's pie for our evening meal.
Poor Nunky Noo!!! As soon as he turned up, my sister and I would play rough and tumble games with him, like tickling and him and he would grab our wrists and getting us to hit ourselves n the back of the hands and say 'why are you hitting yourself?'. We would also play rock, paper, scissors and another game which seemed to involve a bit of quick reflexes or esle we'd slap each other's back of the hands. We would wreak our revenge by messing up his hair - he was a bit of a fashion victim so in the 70s, he had quite long hair and flowery shirts. His length of hair meant that we could mess it and comb it in strange ways. In the evenings, we'd play board games or card games. My nany had a phenomenal memory for remembering what cards had been laid so she'd win whist but couldn't tell yo what she'd had fpr dinner though. It's odd how your memory does such strange things. Nunky Noo didn't believe in letting children win and would play dirty in chinese chequers or any game!!!
One year I had bought nunky noo some compost so didn't have wide enough wrapping paper to wrap it up in so spent the afternoon cutting out hexagons of different christmas wrapping paper and gluing it together to make a huge sheet of paper. It was such a huge piece of work and after that it became a tradition to wrap a present in this paper each year so alternate years, it went between him and us. It lasted years and became quite a tradition. It must have eventually broke but lasted a good 10 years - don't think the glue or paper we have now would last that long.
In the late evening we'd go off to the midnight service. Then come home and have some mince pies, gammon sandwiches or sausage rolls with our hot drink and then go to sleep. Fancy eating that much just before bed!!
This year neither mum or I had the energy to go to our local midnight service. It was too late for me now in my state of health.

AJ woke up just as we going to put the stockings out in the bedroom and wouldn't go back to sleep. Eventually, he went to sleep and so did we but without putting the stockings out!! Luckily, I woke up at 4am and took their stockings to their room. Hope theydon't wake us too early!!

2008-12-27T23:19:00.009Z

Tuesday - AJ slept for 12 hours so was a bit calmer today. He didn't wake up till 920am so it was a bit of a rush to get him ready for the childminder especially as needed to get the presents and cards out to people. I've lost so much time as I've been in hospital so frequently. Usually, I start doing some christmas shopping in november and take it all more slowly. Thank good ness for the interenet and that has been such a huge boon to me. I've even been in for for collection of the parcels except for 1 I had to collect from the post office and 1 from the neighbours.
Mum and I eventually went to Waitrose about 11am where parking was chaotic and the queues were quite horrendous. I was desparate for the loo due to all these water tablets I'm taking. The department head was about mid 30s and was really helpful. She let me use the staff loos and then offered to pack our shopping for us so we could sit down. It seemed such a kind thing to do.It seems so wrong that my mum at 73 is looking after me again. It should be the other way round. Waitrose were true to their word and gave mum and I, 2 chairs to sit on and the dept head and till lady unpacked and packed our shopping and even found us a man to push it out to the car and put the shopping in the car. I know it costs more but it tastes better and the quality of the food is so much better,
After the shopping we called in unexpectedly at one of my monday helper friends to give her her christmas present. She invited us in and we had some lovely coffee and mince pies so thank you.
In the afternoon, we just unpacked the shopping and i had a rest until 330pm when hospital transport turned up. I wasn't expecting an appointment and the ambulance driver rang the hospital and they confirmed that I wasn't due to be seem umtil the 8th january so they drove away and told methat transport was also booked for tomorrow as well!! I phoned chemo reception and they confirmed that there was no new appointment for me so cross as would have liked my chemo that day. Suppose it exlains why transport never turned up the other week!!
Wrapped presents in the evening - it feels like I'll never finish.

2008-12-27T10:12:00.005Z

Christmas Festivities
Monday was very hectic. I took AJ to the opticians to collect his new Starwars glasses and the optician was surprised that I hadn't taken both boys as Woody's glasses were also ready as well. It would have helped if they had phoned and told me that as they seem so keen on phoning you about everything else!! We had parked on the roof above Sainsbury's Home Store rather than than the food store. The lift down has always been dodgy and today, it was quite frighteningly squeaky. AJ said it sounded like hundreds of rats runniung away - I think it just needed oiling. We got his glasses and spent some time in Sainsbury's buying pressies for grandparents and a few extra bits incase I got caught out somewhere. As soon as we got back and I then had to take Woody back to the Opticians. These new ones from the independent trader seem much stronger than the previous ones from Dolland Aicheson so hope he loooks after them better this time.
I got back home and got a phone call from the occupational therapist at social services so she could inspect the stairliof. It seems a bit late now. It was fitted on friday and so if it was unsafe anything could have happened. She came out almost immediately and agreed that the lift did bump over where it was bolted onto the staircase but it was OK. I know it looks as if it has been stored in the damp as the ratchets all look rusty. I couldn't help wondering if once you are classed as terminally ill they give you the oldest lift available or is that my cynicism again??!!!
Then the carer came and I was glad to see her. She was supposed to have been cancelled but she she never got the call. Anyway, she got me a snack whilst I was waiting for Heather and her 2 boys to turn up.
They came about noon and after a quick cup of tea and sorting ourselves out, we went out to Pirate Pete's where there is a small playarea but just about kept them occupied until our dinners arrived. The food was lovely but a bit on the mean side I think. Laura had a chocolate sundae with chocolate brownies, cream and chocolate sauce and icecream and then polished off her twin brother's fudge cake!!! I'd had huge trouble getting AJ to leave the house - but Heather did the trick and got him to organise where we were to eat and generally cheered him up and gave him lots of praise so he felt better about himself and that he had been given the choice about what we were doing. he is so tired.
By the time we got home, my mum had arrived so I sat and rested whilst Heather did the ironing and mum hoovered and I sat there as the lady of leisure!!! We had a lovely afternoon chatting and then I took Heather and her boys back to the station. We timed it rught as the return journey looked awfully slow but by the time we'd been to the station, the queues had died down and we got home quickly.
I came up to bed in a bit of a state as we both felt that we were too overcommited to people over the christmas and we would be letting people down if we didn't turn up and I felt all confused over who we saw and who we didn't. I was just settling down as my back was sore when 2 of Pete's friends came over bringing food and wine with them. They are good company but I felt so overwhelmed with visiting people all over christmas and so eventually, I decided which iof the events I would cancel and felt much better then. I did spend so much of the evening in tears and just not being sociable but just needed to clear my head. Once I'd made up my mind i felt better and then could settle. i did apologise for spoiling their evening. They were both very understanding as I don't usually fall asleep or cry all over them. We did have some laughs though. AJ was in top form and using a huge vocabulary, although we did both panic when he started to talk about the Virgin Mary. He told us that it meant 'lady' so that saved our embarassment. it was lovely to see theo
Ttomorrow, I will not go back to the hospice as need to get food shopping done and mum is here to help me do that. There will be no therapists by the sound of it so think food will take precedence!!! The local theatre are coming to sing and do a condensed version of Cinderella. Normally, I like pantos but I go to the hospice for the alternative therapy and we've missed a lot of that recently which has been sad and i know the rest of the group feel the same.
Am having duck on wednesday, with gammon and chicken so that we don't have to do a big cook on christmas day - old family tradition on hybby's side.

2008-12-22T00:47:00.002Z

Hospital, Stairlifts and Home
Well, as many of you know, I did end up in hospital with a chest infection but am back home now.
I went to see the GP on wednesday evening but felt unhappy with the low strength antibiotics he'd given me so decided not to take them. Probably not the wisest of choices.
I woke up at 8am on thursday by the electrician and then went back to sleep again for a while. When I woke up I was freezing cold and felt so fluey and achey that I had to ring and go to hospital. Luckily, Pete had taken the day off sick himself with this same bug so he could take me in.
The wards were full so they were opening up the day beds as the ward. Eventually got moved to the proper ward and into the ladies bay. This time they treated me for a chest infection and so didn't waste time being treated with the wrong type of antibiotic.
The chest xray showed the infection was mainly based in the right lower lobe of my lung which is prone to infection as the tumour is squashing the entrance to that part of my lung. Had antibiotics via the drip till friday night and then switched to oral tablets.
they found my potassium levels were low so had a transfusion of that and am now on oral potassium supplements.
I had 2 units of blood as well as my haemoglobin had dropped so that has boosted me as well.
Came home saturday afternoon - thanks for the lift and have taught myself how to ue the stairlift. It's brilliant as can go up and down without huffing and puffing. Very definately second had but works so that's the main thing.
Today went out for the morris minor owners christmas meal which was lovely but I got a bit too hot and tired at the end. We've been busy wrapping presents and as usual have lost a couple in the loft.
Tomorrow have Heather and her 2 children down for the day and mum arriving to help me to get the food for christmas etc. Think a lot of tidying needs to be done first as bedrooms are a tip and need to wrap up pressies and get them up in the loft again until christmas eve. Also need to collect AJ's glasses which he is so excited about.
must go now as keep falling asleep and so will re-edit this soon but you now know I'm out of hospital, on antibiotics and potassium and extra water tablets and had 2 units of blood. The stairlift has arrrived.
night all and will re-edit it in a while

2008-12-17T22:15:00.003Z

Selective Memory or Lack of Communication - you decide!!!
Right - Pete and the children hate it when I say that as it means I want a job doing!!!! This time they are wrong!! I wanted to say that Wendy remembered the programme I was referring to in my post before last was called 'Catchphrase' so thank you for that and as I never fully wrote about the last 10 days or so, I have added loads to the last 2-3 postings so if you are interested and have the time then please scroll back down.
Eventually, on monday I gave up of all hope of anyone phoning me back about my echo and spoke to a surprised receptionist in 'non - invasive cardiology' as I was told I should call it, there was the paperwork and appointment for 1030am on wednesday fully booked - hurray!!!!
Tuesday - I went to the hospice in the morning and it was the annual Carol Service. We started off with a keyboard player and a violinist but the electronic keyboard decided to give up which was a shame but the violinist was amazing and played everything without music. It was a lovely service with some different readings/poems in to make it more open to different religions and non-believers. We sang 'Oh Little Town of Bethlehem' which is one of my favourite Carols but had to sing 'Hark the Herald Angels Sing' which is too high for me and judging by the singing, everyone else in the audience too and 'Oh Come All Ye Faithful' which I also don't like and again has too many high notes in.
We got looked after well with plenty of tea and mince pies and shortbread and then all sat down for Christmas dinner. Everyone said 'it was really tasty' but I found it dry and overcooked - so sorry - usually the Hospice food is excellent and the Christmas pudding was more like a spongy Christmas cake.
I then had to sort out my care package with the social worker as the weekly care plan was all wrong and I needed to cancel the domestic/shopping help on wednesday due to the echo, lunchtime call on thursday due to chemo and was cancelled 4 weeks ago and no domestic help on friday when I was told last week it would start this week.
After doing this, I then went to a local garden centre to meet up with another Folkestonian for tea and a chat. It had been about a month since we'd seen each other so it was good to catch up.
Then I had to be home for the children. I felt more confident driving today despite the continual fog that persisted all day. after this I had to go back to the GP as the long acting morphine I take was giving me terrible acid reflux. I had been fine with the gelatin capsule type and that is what they use in the hospitals and hospice but these slow release tablets kept waking me up in the middle of the night with acid and it's painful and horrible and ended up feeling really sick with it. Once we'd got the name right, I managed to get the right preparation and have not had the same problem since, thank goodness.
Then today - wednesday - the district nurse came to take my blood for chemo tomorrow and then we headed off to the hospital for AJ and myself. On the way there, I got a phonecall from the neighbour who was kindly hoovering the house to say that the carer was there to do my shopping so that was frustrating as it had been cancelled.
We got to the special unit for AJ and I had a good chat with the psychologist whilst Pete made tea. They are still having mixed feelings about AJ going there to stay from monday morning to friday lunchtime for 2 - 4 weeks as they are worried that he will look back at this time and wonder why I 'abandoned' him during this last phase in my life. All I can do is write a letter and explain why we made that decision incase in years to come he wonders why he spent that time in the hospital and not with me. They are prepared to be very flexible about me visiting so think we need to go for it or we will never get this sorted and things in the long run will be worse for AJ.
This sort of conversation with a psychologist makes me feel so desparately sad as I am desparate for the children not to have huge emotional hangups when they are young people/adults as it limits your life and happiness. I feel guilty dying and leaving them without having a psychologist rubbing it in. I used to work in various Young People's sexual health and advice/counselling clinics and met what seemed like so many traumatised young people who had gone through a parent's death or messy divorce and then, for some reason, had not been supported properly afterwards and would be in all sorts of emotional states or have problems such as depression, self harming, unwanted pregnancy, low self-esteem and it does really scare me that I'm leaving my children alone with just their dad and how they will all cope. It's not that I don't trust Pete to bring the children up, it's just so much more difficult as a single parent. Will they blame themselves for me becoming ill? I dread some sort of research coming up in the future that will prove some sort of link between the way I have lived my life and breast cancer especially if it involves having children and the stress of it or my lifestyle when I was younger. I really don't want them blaming themselves for my illness and death and I certainly don't want them to think I abandoned them.
Better move on to the rest of today before we all get too upset.
I then went for my echo. I was exhausted from walking across the hospital grounds and pleased that there was a 10 minute wait as I wanted my heart rate to be a bit calmer. I'm not sure what sort of qualifications the person I saw today had but he was not very gentle and I ended up with a red mark at the bottom of my chest bone where he'd been pushing the ultrasound in. He told me that there was only a little fluid there so will have to see what happens tomorrow when I see the oncologist whether he still thinks I need this fluid drained off or not and what my heart function is. I'm not sure I really want to know as if it is too low then I will have to stop herceptin and I feel that is what is keeping the chemo working and me alive.
On the way home, my neighbour phoned again and said the stairlift man had arrived. The last I heard about the stairlift, I was told that it needed to go to 'Panel' to decide if we could have it fully funded. I'd had no phonecalls or letters about this at all so was not expecting this at all. We were only 10 minutes from home so he waited until we got back there. He phoned his office inbetween times but when we got in, he asked if the electrician had been in and so of course, he hadn't so they couldn't fit it anyway!!!
We had a quick lunch and then we went off to the junior school to see the years 3 and 4 christmas productions. They were very good but at times it was difficult to hear due to small babies and toddlers getting bored. I also fell asleep at some point.
I can remember being shocked when the twins were at this age by how many of their contempories who may have been slightly podgy at infant school becoming obese in years 3 and 4. I don't know why or if it is even a proven fact but it just seems to have happened in my experience.
I then had a quick sleep and was woken by the phone to say AJ's glasses were ready to collect. He is so excited about them. Pete paid extra so he could have something like 'starwars' on the arms so he wants them now!!
I then went to the doctor's as my cold is heading chestwards and I'm so scared of being as ill as I was last time. The 5th year medical student and my doctor couldn't hear anything on my chest but since I've been home I sound and feel wheezy and had one nebuliser and going to have another one before I go to sleep.
About 530pm, I got 2 phonecalls about the stairlift. One was from the organiser who was cross that the stairlift hadn't been fitted today as she had done a lot of organisation and rearranging to get the lift in today. It would have helped if they had phoned me first and as it turned out, as the electrician hadn't been in contact or been, he couldn't really do it anyway. The plan is now that the electrician is coming tomorrow morning and then hopefully, the stairlift on friday.
I've come to bed early for the 3rd night in a row - I mean about 5pm so had dinner in bed again which seems very early but think I need to be careful because of my cold/chest especially as I can hear rattling now. Time for nebuliser now and see what will happen tomorrow!!

2008-12-15T22:01:00.003Z

echo date
After numerous phonecalls between me and the oncologist's secretary and the echo people, finally got appointment through for wednesday. Quite good timing as same time as AJ has an appointment at the same hospital so won't need to drive.
Presumably, I'll get the report the next day when I see the consultant for my chemo. Not sure if should pack bag incase they want to drain it off straight away. Scared about the drainage as not sure where they can get a needle through as I thought most of my heart was surrounded by the cancer.
I went out with the aim of finishing my christmas shopping. My friend who has been cooking for us on a tuesday took me out and I hired a shopmobility scooter. It was a different one to last week and I did struggle with the steering. It's not helped by how narrow the aisles are due to the christmas stock and that people have a habit of walking backwards into you. This one did not have a bleeper for reversing and somehow I managed to turn the right indicator on but couldn't switch it off. I think I'm just about there.
I got into bed very early and did some wrapping up of presents. The children also helped to wrap some presents as well so feeling very christmassy now.
Very tired and will write more tomorrow.

2008-12-11T23:08:00.005Z

Cock ups and Fluid Round Heart
Firstly, I'll start by saying thank you to our friend who cooks dinner for us on a wednesday night as she had organised a wonderful lunch and we sang carols and had organised a fun quiz that was about christmas carols and songs and based on that Roy Walker Show whose name I've now forgotten but he said 'just say what you see' so that was a lovely distraction and as I walked up there with mum with no trouble, I now feel more confident that I can walk up to see her again on my own. I've really lost faith in my ability to do things on my own since being ill this time. It's so unlike me and hope I can get over it but I'm worried about my capability and if I will get muddled out on my own.
OK so hope you are ready for another report of cock ups. Well as usual if it could go wrong it went wrong. Was ready for 945am for my 1045am appointment but the transport didn't turn up! It should have clicked it wasn't going to be my day but ever the optimist....They had to send a taxi at 11am which was better really as had put together a basket of fruit, nuts etc for the chemo staff and I wasn't crushed in the back.The taxi man wheeled me down to the ward end as had bed booked and as we were passing the waiting room the chemo receptionist was outside and took my appointment card to book me in. By this time I was in agony from my back and shoulder and I was thinking in a minute I can lie down and I'll feel better. However, at the ward reception, the sister told me that no bed had been booked for me so I just burst into tears so she put me in the ward waiting room which at least had a supportive high back chair and got me a pillow to help me rest my back and I took 20mg of oromorph. Had already taken 80mg MST at 8am plus diclofenac and paracetamol.The sister couldn't find me a recliner chair for at least an hour so I just had to sit and wait. It was so frustrating as I knew the onc would order xrays and it seemed so stupid to wait to see him and then get an xray and go back to see him again but the NHS doesn't work like that does it!!Then the research nurse arrived with my notes after about 45mins and it was then I found out that I wasn't on the clinic list either so I don't know what had happened to why I got booted off the system. At least the oromorph was working and the research nurse spent a long time with me which was lovely and made me feel someone cared. Then my mum arrived!!! I just felt like throwing my nuts and fruit around the whole place I was so angry and unhappy and knew the receptionist had sorted it all out last week.At just after noon, I got a recliner chair so could lie down on my side and rest better. I saw the onc at 115pm who of course ordered xrays and examined me and thought I had new bony mets in my ribs. he really hurt me as he was listening and tapping my chest but he said my chest sounded clear and I had no obvious sign of cord compression. He also thought I may have strained muscles as I am so weak but can't think of anything I've done that is remotely strenuous.The onc came to see me about 4pm to say he couldn't see anything new bony spread but to me that means nothing as in 2006 my massive hip/pelvis one didn't show but he could see my heart had significantly enlarged and thought it was more likely that I've got fluid around my heart than heart failure due to herceptin damage as I've got no other signs of heart failure. So now waiting for emergency echo and fluid drainage from my heart. Not sure how they can do this as thought the solid tumour was wrapping itself round my heart so don't know where they put a needle in. He still gave me the herceptin though as we felt it was worth the risk.
My chemo didn't start till 445pm so didn't have the steroids till 5pm so although exhausted I can't settle to sleep as steroids make me feel so twitchy. My chemo didn't finish until 615pm and got home at 645pm. Absolutely exhausted and still in immense pain with no apparent cause.
Poor Laura is still continually coughing but wants and needs to go to school tomorrow.
Want to finish my christmas shopping tomorrow and then meeting friends for lunch.
I know I need this echo and draining urgently but also have plans etc I don't want to cancel and want to see AJ in his school production!! Want my cake and eat it again!!
Had a lovely lunch on wednesday at my friends house where we sang carols and she provided a wonderful lunch and a fun quiz that was about christmas carols and songs and based on that Roy Walker Show whose name I've forgotten but he said 'just say what you see' so that was a lovely distraction and as I walked up there with mum now feel more confident that I can walk up to see her again.
Friday - I went to my friend's house for lunch. My idea had been that we go out somewhere and I treat them as they usually come on a monday and do my housework but due to their work commitments etc we had to squeeze it in at home. I think we did better for taste at home as one of them had made a really tasty lentil and bacon soup with some lovely bread and then some lovely yogurts.
That evening, the twins went off to their Scouts' christmas camp. At least, they were indoors this time as it was a cold and wet weekend.
Later that evening, Wendy came round to see me so we sat in my sanctuary to have a good chat without interuption which was lovely.
The twins returned sunday afternoon and then it was time for our christmas ritual of getting out Tree and decorating it and the rest of the house. (Tree starts with a capital letter as it is a noun to us)
We love our Tree and it is Pete's ambition for Tree to last his lifetime. It is only 3 ft tall but we've had it since we've been together so it's very special. Before having the children, it used to be decorated with wooden toys like nutcracker soldiers, rocking horses, small angels and father christmas with a star on top and tinsel , baubles and coloured lights.
I've only ever made 1 totally co-ordinated tree and that was on the first christmas in my house on my own in 1990 and it was silver and pink and that was a real tree. Was that fashionable then as writing about it makes me think it sounds more like the 8os.
I always admire other people's co-ordinated trees and would like to have the discipline to do it but anyone who knows us would not be surprised to find our Tree is rather eclectric!!!
Since having the children, we've now got some really sweet little knitted toys, fluffy toys and decorations they have made plus the wooden baubles and angels I bought back from Prague in 2006 and the original wooden ones. We now use LED lights with reusable batteries and at the top is a rather badly made pink angel, I made at a mum's and toddlers group. It is based around an old fashioned peg and was extremely fiddly to make. I think it was way too over-ambitious for a 3-4 yr old to make and too ambitious for a then 38yr old with 3 yr old twins and a 7 month old baby to care for at the same time and I got very sressed doing it as I could see ithers making perfect angels and mine was all lopsided as I got the twins to help me but I made it and that is important to us. I never made it back to the group after that week - all the mum's were too arty for me and they usually only had 1 child to help make things and I had 3 and we had more fun jumping in puddles, blowing bubbles and building train tracks!!!! (Just thought I love bubbles -I've always wanted an electric/battery powered bubble machine!!! Bit late now for my christmas list and, actually can you buy bubble machines this time of year?- you see them in the summer. I always had pots of bubbles in the house when the children were young as it worked as a distraction when it got a bit manic - yes, the house got messy and wet but it was fun).
To go back to Tree, Laura always makes a nest for a cream robin we bought from a garden centre and nestles it in somewhere and then we add the chocolate decorations and sugar cane hoops that Woody in particular wants to finish off eating befire Christmas Day. Under Tree, we have some little penguin decorations and various other snowmen and other christmas decorations.
The rest of the house has LED lights and tinsel hanging around and there are penguin lights in the front window. This year, the children have put some decorations in their bedroom and Pete has put some blue lights and a little tree in our bedroom. For some reason, which I'm sure someone can give me a scientific explanation for, the blue lights make the bronze dragonfly have yellow wings. It makes it look very pretty so I'm pleased whatever the explanation is.

2008-12-09T23:11:00.003Z

Hospice day
I actually had a bath today and it was blissful. I usually have showers but having a bath is now a luxury which I really enjoy.
I drove myself to the hospice and felt much more confident about my driving. As I hadn't really been out for a while I was shocked to see how much petrol had fallen by. It's a big relief though. I was really looking forward to going to the hospice as my shoulder blade area was so tense and painful and I wanted some reiki and aromotherapy to help. When I arrived I could see none of the usual practitioners but a lady who was obviously going to do cake decorating. She had made all these icing sugar pebguins so I thought brilliant, I can make a pebguin to take home. Wrong!! It was like watching something from the Generation Game as she did a full demonstration from the jam, marzipan, icing and decorating and we just watched. The cake is for our Christmas Party next week but I felt sort of cheated as I wanted the alternative therapies or at leaast take a penguin home with me!!! When I arrived, the drive had irritated my shoulder and the pain made me cry and moan and I just didn't know what to do. There was only 1 member of the daycare staff there and 1 volunteer and the physio was seeing patients. I really wanted heat but no-one could get me the cura- heat pads as they didn't know what I meant so I ended up taking oromorph which after about 15 minutes dulled the pain but didn't take it away and I just couldn't get comfy even with a pillow behind me. It must have been the first time they have seen me in pain like that as usually people always say how well I look so I think it rather surprised them. They kept telling me to relax which I knew but was impossible at that time for me as it felt like the nerve was trapped. The cake lady must have thought I was odd as I spent quite a lot of her demonstration trying to massage the bit that was tense and then when someone did find the cura-heat thing, I was sitting there with what looks like a giant white pad stuck to my clothes. I've just ordered some from Tescos but missed the half price deal as couldn't get a delivery slot before the deal ran out and they are £1.50 each. I'll have to see if I can find another internet site that does them more cheaply as at home I can warm the wheat bags but if we are out I need something else to help and it seems ridiculous to use morphine when heat and massage give the same relief.
At lunch, one of the other men who has been admitted to the hospice as a patient was very upset that the reiki lady wasn't there as he gets so much relief from this.
It did seem strange having this demonstration as she was talking to us as if we were all going to go home and make and ice a cake and how we could do different things with our grandchildren. She apparently comes every year but I actually felt quite offended that she was talking to us as if we had a future and we were all well enough to do fancy icing and it just rubbed it in that I won't be here next year to bake and decorate a cake and my fingers just wouldn't do this sort of fiddly thing now anyway.
This afternoon, we made paper christmas wreaths which was fun and I was pleased with my effort. They are going to hang them round the room for the party next week. being very selfish, I wanted to take mine home but hopefully as I've put my name in the back I can have it for after christmas so it can be used for another year.
I left early and went to a local cash and carry and bought a few food things, wicker baskets and some oasis and plastic flowers and some sweets for the stockings. I want to make a couple of baskets up with nuts, dried anf fresh fruit for the surgery etc and was so pleased with the christmas wreath I made a few weeks agao, I thought I would have a go at making a couple of table decorations for our christmas dinner.
This evening the twins have been putting their final touches to the history project and they have put them in presentation folders so they look very good now. Poor Laura - her nose just won't stop running and now she is coughing non stop but she is so desparate to go to school to hand her work in and do her presentation but I don't think she is up to it. Hopefully, Pete will take her to school tomorrow and then we'll see if she comes home after history.
One of my ex-work colleagues came round as well this evening so that was good to catch up and have got some loevly mints to eat and a book and magazine to keep me occupied. Must go - think we'll have to try some steam as she can't have any more medicine and she doesn't like hot drinks. Last time one of our friends made some special cordial up which really helped her so will text her tomorrow to see if she has anymore.

2008-12-08T22:15:00.004Z

Weekend
Laura had a sleepover which went well and meant that the boys room, Laura's room and the living room got tidied!!! The girls arrived at 530pm and we had a chinese takeaway. They were quite well behaved and I did manage to sleep before the girls settled. They also let me sleep in and Laura cooked lots of omelettes for her guests so I was very impressed with her but the poor kitchen looked rather a mess but never mind.
Pete had the double bed with AJ so had a restless night as he is not a peaceful sleeper.
I slept in Laura's room and Woody was at his grandparents as he wanted to help his Grampa with the stall on sunday morining. Good job he has lots of thermal underwear from scouts as it was so cold.
He bought us all things from the market which was really sweet of him.
Hubby took AJ out to do the usual 'wodgy' hunt. I think I might have explained this before but when it is really icy, the children love to stand on the puddles and break the ice up and then slide the pieces across more ice. It makes the most amazing 'ding' noise. They also like to break the ice over their heads!!! All a bit mad but great fun. Pete got brilliant photos of all the ice and of AJ playing and breaking the ice up. It was amazing how the ice had formed. Some had formed in circular patterns and others were really angular. Isn't nature amazing!
However, on the way back when they were going up a hill at only 20mph, they hit black ice and ended up spinning at least 180 degress and maybe 540 degrees and so ended up on the wrong side of the road and actually completely off the road. They slid down the ditch and hit a tree and the car ended up at a 45 deg angle. The photos of the car after it had stopped were amazing as the whole of the back of the car was up in the air and it was amazing that they didn't get hurt and actually the damage to the car was not as bad as you would have thought.
They waited over an hour and still the recovery vehicle hadn't turned up but a landrover who was going off roading stopped and pulled Pete and the car out and it was actually driveable. There is damage to the drivers wing, door and front light but otherwise it escaped with little damage but is very sad to see the poor moggy in its bashed up state. Poor AJ was apparently quite upset at the time - well who wouldn't be - but now sees it as an adventure.
Pete had not really organised himself before he went out as he had little credit and little battery on his phone so by the time he'd contacted the insurance company to be rescued and texted his friend and brother, he couldn't contact me.!! This happened about 1045am. The first I heard about the accident was a phone call from the insurance company trying to locate the road Pete was on. I could picture it in my head but couldn't give instructions on where to find them. Luckily, Laura's friend's dad was here and I knew he knew the roads well in the New Forest so he took over the phone call and helped the insurance people. He also volunteered to drive out to find them but I thought they would be OK but thanks so much for offering. They insurance company were supposed to phone me back but never did and I had trouble trying to locate the specialist insurance company rescue helpline who were supposed to be sending out a rescue truck. TPete had his phone off so couldn't get hold of him to find out what was happening. Eventually at 1245pm AJ, Pete, his brother who had gone out with supplies turned up home.
Rest of sunday went quietly!!!
My pressure sore is improving but did give me a shock as it must mean I'm quite poorly for that to happen so quickly and I don't really feel that bad at present.
Spent quite a bit of time this morning - monday - doing some more to the memory boxes and my life story. I quite enjoy writing that - I just hope it will be read. It's social history really as I've written about how we didn't have central heating or a phone at home and how everyone used public transport and also to see how we are dressed. There is a picture of us as a family at the playground when I'm about 4 and my Dad is wearing his shirt and tie and my Mum looks very smart to be at the playground but in the early 1960s that was how it was. I only have one photo of my Dad and myself together and that was on my Christening Day as then it was the men who used the camera but there are family group shots. Actually, there are few photos of just Mum and me but having photos printed was very expensive then. Luckily, my father had slides rather than photos and when I had them put on a Cd Rom and then printed the quality is amazing and much better than the black and white photos that were developed.
Woody didn't go to school today as a bit coldy but really overtired I think. Laura went but her cough is so bad I'm not sure she will make it into tomorrow and I had to pick her up from school as she was tired and had fallen over this morning twice on the way to school as the pavements were so slippery- poor thing.
Mum arrived about lunch time which was the same tine as the carer came to make me lunch and my mother in law was on the phone to organise what we were doing about christmas. I'd only met this carer once before and then I had a houseful of people so I'm sure she wonders why I need help when people are there even though I usually spend monday lunchtiime on my own as the 2 friends who help me have usually gone by then.
A friend came over just after lunch so that was great to catch up. Then I went into the local shops to buy a few bits. I still find driving rather difficult and it seems to be my steering that I'm struggling with. My reactions feel OK and my judgement over what I'm doing and what others are doing, I just seem to not be able to judge the steering right.
We then had a family card opening session which was lovely. We had no actual post today which is suspicious - usually this time of year, I get post everyday but we have noticed that quite frequently we get post on alternate days. We are waiting for loads off the internet for christmas now. so hope they all turn up.
Tomorrow, I'll be at the hospice and mum has various jobs to do in the house for me so hopefully will be in if the goods arrive!!! The queue in the post office collection place is horrendous and is shut between noon to 5pm!! If it is another company delivering then it could be left at a depot 3-5 miles away so do hope we manage to be in.
Nearly asleep now so will review and edit tomorrow. Tuesday evening - edit done. Have I still left typos??

2008-12-05T15:02:00.003Z

School Friends and Horrible Day at Chemo
On Wednesday 2 of my friends from school in Folkestone came to see me. It was lovely and hard to believe that 30 yrs has passed since then. It's always the same with really good friends isn't it. It always feels like it was only yesterday that you saw them. They bought me some of those lovely Gordon Ramsay chocolates that I keep hinting how much I like them and some long furry slipper boots which are so warm and comfortable. My feet are blissfully happy in them and they cover the gap between my fleecy long nightdress and the floor so thank you so much. They were made by a company called 'gluv your feet' and I would recommend them.
We had a lovely lunch out and then they had to go but hopefully will see then soon. It was only after they left that Pete said he'd have liked to have come out to lunch to so he culd find out the real tales from our school days and not the special adapted ones I tell him!!!!
AJ had been out with hubby earlier in the day to the behavioural place so that he gets to know the staff so that we can finally sort out his constipation and other issues in Januray. He seemed to have a lovely time and came home with a really good book which explained how all of your body works with all these lift the flaps bits. It was so well presented and probably aimed at the 7 - 10 age group. He liked the book but was very pleased that the school day at the unit was very short wth lots of playtimes!!!
Thursday morning started off badly as I must have gone to sleep in one position all night as when I tried to get up, I had little feeling in my left leg apart from pins and needles and it wouldn't move properly or take my weight. It was very scary. The carer had to support me to the bathroom until my leg came back to life. I had to take oromorph straight away as it was so painful. It came back to life slowly but was so weak that I could only hobble and it wasn't till mid-morning that I got the usual movement and feeling back. The transport arrived 15mins before I was expecting them and then I had to sit in the back on the driver's side meaning I had to get my left leg in first which is always difficult. Eventually, the transport helper assistant who was in the front asked me if I wanted to sit in the front by which time I'd manouerved myself into the back and the driver was getting my belt on so there seemed little point in moving.m I wasn't expecting to be 3 of us in the back and I was the only one with mobility problems!!! (I found out later the transport assistant was new so next week I will ask to sit in the front if they expect me to be squashed into the back). It was a really painful journey to the hospital and in the wheelchair to the chemo suite.
I spoke to the nurse who I had spoken to yesterday about getting a recliner in the chemo suite and she sent me through to the treatment room. The chemo nurses were not happy that I was 'blocking' a treatment chair and all day kept saying 'we could see more people if we had more treatment chairs' which felt like a dig at me. They could see I could hardly walk and I told them I had a pressure sore and that I had asked last week for a bed or recliner and was told there was none and to go in to the treatment room. I felt they thought I was lying about my pain, and my pressure sore. I never asked for any help off them. I got my own water and tea even though I was struggling with getting my leg to work properly so I was not demanding anything of them. It could just be me feeling vulnerable and misinterpreting them but last week, the nurses were saying they needed more nurses and never mentioned treatment chairs. I felt really neglected and abused really. I've got a bed booked for the next 2 weeks so that is a relief and my mum is here next week so that will be a great help.
I nearly missed having the zometa (bone strengthener) as pharmacy had put the vial of the drug in the tablets to take home so it was a good job I'd woken up and looked in the bag. It was run through extremely quickly as transport were waiting for me.
I was also sick in the chemo suite today after they sped the taxol up as again no-one had checked it during the hour it was running so was way behond time - they can't use the machine as it has to go through a filter. No-one came to see if I was alright after I was sick, it was left with me for about 10 mins and I must have just gone straight back to sleep but knew I felt really hot and ill and was waiting for someone to come back so I could explain how poorly I felt. That was the only time I asked for help and apart from getting me the sick bowl, no-one offered me any more anti-sickness drugs or if I felt OK. It was my 13th taxol so you wouldn't expect to suddenly be sick after being fine for the first 12.
It was a horrible day and I just felt that I'd been made out to be an unecessary nuisance and got no care. I could have missed my zometa and I think it was worrying that I was ignored after being sick and gone back to sleep. They knew last week I was using oxygen and wasn't this week so surely they should have checked that my oxygen levels were ok as I'd been sick and was obviously in a deep sleep. Felt really uncared for and misunderstood.
At least, I got home by 5pm but I felt too upset and sick to eat properly so had a strange mixture of fruit salad, creme brulee and shredded wheat. I had eaten a forticreme mousse at the hospital so had had some proper nutrition there as well as a tuna wholemeal roll.
Got to sleep at a reasonable time last night and felt much better this morning. I've even been out on my own in the car on my own and did a little shopping locally so felt very proud and it has given me some confidence back.
Unfortunately, when I got back I tried to rush around a bit too much and made myself breathless as the man from the stairlift company was coming and I needed to move a few coats and shoes so he could measure properly. It was then that I found that hubby had unplugged the oxygen so got in a panic and had to move the oxygen condenser out of the understair cupboard and then the ironing board fell on me so got even more exhausted and breathless. It didn't occur to me to use the portable oxygen but when I looked later there was hardly any left so need to get hubby to change cylinders.
That reminds me, the oxygen company dropped off a paediatric oxygen cylinder on thursday afternoon. I have no idea why Pete accepted it as it is so tiny nor did he give them back the empty cylinders. Today I phoned the oxygen company to be told that my prescription said paediatric cylinders!! I said they'd sent me adult ones previously but the person said the law had been changed and told me to phone the surgery and get the prescription altered. I still don't understand what this has to do with a 'law change'!!! This I did but neither the receptionist or myself could understand which box to tick. She told me to phone the company!!! AAARRGGHHH. I phoned the oxygen company and she agreed to phone the surgery to sort it all out. I'm fed up with having to sort all these things out myself.
The other thing is the carer noticed my pressure sore is beginnning to break down so will have to be very careful now how I sit/lay but it is so difficult doing things on your side and if I lay on my left side to use my right arm then I'm laying on my left arm which is swollen with the lymphoedema and the skin breaks down very easily there.
Going back to write christmas cards now. I actually quite enjoy doing that.

2008-12-02T22:09:00.003Z

Shopping

I didn't go out all weekend. It was wet, cold and miserable and i couldn't face it. Poor Laura - her bed is under the window and she has been so cold. Pete made a roman blind out of a towel!! It is not attractive but it has helped her until we can get a better blind in place.

I felt a bit rough sunday night after our dinner and now I'm wondering if we'd undercooked the chicken. At first I thought I'd taken too much laxatives but now on tuesday evening, I think I've eaten something or got a viral infection. I feel really tired and keep falling asleep and then can't wake up and feel a bit fluey as my joints ache and I've got a strange headache that I get when I'm ill with a temperature. My temperature is not up but I feel ill.

Yesterday, I went shopping and probably overdid it but I was in my mobility scooter. I did really well in getting things done. I got my money back from Next even though I was later than 28 days as I was in hospital and then not really able to go out. I got Laura's bras changed in M and S. That was such a frustrating shopping experience. The refund area has had the wall moved so it is impossible for me to get down the queue and to turn at the end to be served. Debbie stayed in the queue and I waited at the top end until Debbie joined me in the queue. We had a coffee there but to get in to the cafe, we had to negotiate our way through all the homeware department with all the glass and crockery etc. The gangways were too small and someone had left crates to be unpacked in the gangway as well. I wrote to M and S before and got no reply so will write again.

I'd bought some make up in John Lewis last week but had realised I'd been given the gift bags but not the make up and skin products which were supposed to be inside so I collected them as well.

I also bought the christmas cards and wrapping paper. It's so odd that now the VAT has been reduced, the prices all end in very strange amounts now like £3.61. You wonder what they did with the 17.5% to make all goods end in 99p!!

I got home about 230pm and went to bed and slept straight away. My friend bought AJ back from school and let him in the house. I stayed awake long enough to speak to him and then fell asleep till about 4pm. I stayed awake for dinner and went back to bed about 6pm and fell asleep. AJ woke me up so I could read with him at bedtime. I just couldn't stay awake. I'd read to him and fall asleep mid-sentence. He'd try to wake me up and apparently, I kept saying things like "Do you want cheese on your baked beans?" and when he asked me about adjectives (why he wanted to know about adjectives at that time of night, I don't know!!) I said his shirt was too small!! My friends had come round and I couldn't keep awake. Eventually, Pete came up and made sure I was awake so I could entertain my guests. Once I was up, I was OK until 11pm.

When I woke up this morning, I still felt awful so didn't go to the Hospice and just stayed downstairs doing Christmas cards.

This afternoon, we had to see Woody's teacher to sort out a few homework things and then when we got back at 430pm, I just went to bed till 630pm when a friend dropped by and we had dinner together. I really struggled to get out of bed and by 845pm I was falling asleep in the chair but have joined in with the live chat on one of the forums tonight till 930pm and then been looking at emails etc and now am ready to go to sleep again. I can't work out if this is a reaction to stopping the steroids or if I've got some sort of bug. I do feel all achey like just before flu kicks in and am still dashing off to the toilet. I haven't got a temperasture though. I will have to see how I am tomorrow as if got infection somewhere then my bloods may not be right.

2008-12-01T16:56:00.002Z

Friday - Busy and Exhausting Day
My carer came later this morning which was lovely to get a lie in. Then my friend who I worked with and is now training to be a health visitor came to see me. She helped with the washing and made tea etc before we could sit and chat. AJ had an inset day but was also due to be seen by the Bowel consultant today so Pete took him quite early up to the hospital.
A lot of people visited inbetween Pete and AJ leaving and returning again.
My friend was about to leave when the occupational therapist from the social services arrived to look at the staircase to see about a stair lift. She thinks our stairs are suitable but it has to go to panel to be discussed because of needing funding.
Then my friends from Surrey came to see me. He had been to a conference about anaesthesia here and my friend had come down too so she could see me. She has a chronic illness but you wouldn't know it by looking at her. You might think she looks a bit tired but apart from that you would think she was fine. We discussed how people's perceptions of an ill person was and how difficult it was to get people to understand when you were out, that you were not being lazy or difficult but when you ask to sit down, it is because we feel genuinely ill.
After asking Pete for 3 nights to make AJs bed and it not being done (he's been sleeping on a sleeping bag), my friend's husband did it for me so thank you very much. AJ and I both appreciated it.
Just as they were about to leave, the occupational therapist and assistant arrived with the electronic bathseat. It is an extremely interestingly affair. The motor has to be recharged and obviously that part stays out the bathroom as water and electricity don't mix. The bath seat sits on giant suckers and the sides of the chair fold in and out. You have to sit on it and swing your legs round and then push the button to go up or down into the bath. Will have to give it a try out if the bathroom gets warm enough.
They just about left when Debbie came with the ironing and then Pete and AJ came home.
apparently, they saw a different consultant this time and AJ was much more relaxed and could talk about his problems more openly so hopefully in January, he can be seen by the team at the Behavioural unit and he can get some help.
I had planned to go into town in the afternoon but I was exhausted by all these people so just sat and rested and did a bit towards my memory stuff.
The weekend passed without much incident. I helped all of them with their homework. AJ's seemed far too easy for him as it was fractions which he understood perfectly and must have taken him about 30 seconds to do the 10 sums. I helped the twins with their maths and history projects. It seems to me that they are not taught how to format or present their work neatly. We seemed to spend quite a bit of time sorting that out.
Near enough rained all weekend and was very cold so was in no hurry to go out once I knew that. I did some cooking with Woody and Laura and a bit of a puzzle with AJ.
On sunday, I helped with the sunday dinner again. Ican not get the timing of the yorkshire puddings and the roast potatoes right!! Baths/showers for all of the children in the evening. The problem I had all weekend was that it feels as if my spines are rubbing together and as if I've been kicked in my sacrum. I don't know if that is to do with me not having the transfusion of bone strengthener for about 8 weeks now as the onc said I didn't need it as the drug stays in your system for about 3 months or longer so think Iwill have to discuss that as well.
I really don't like being cold and seem to have been cold most of the weekend. The week's forecast looks horrible though

2008-12-01T16:28:00.002Z

Chemo Day
I was told to be ready by 930am for transport for my 1030am appointment. The journey takes about 20 - 30 minutes but by 1010am, I was beginning to despair. I phoned the chemo reception and was told that transport had told them that they were going to be late. No-one thought about letting me know though!!
I got to the chemo reception at 1040am and asked about getting a recliner chair as my back and behind are too sore to sit for too long in an upright chair. They did give me a recliner chair and I relaxed happily and chatted to the other ladies until Debbie came when we chatted.
I had a very brief encounter with the oncologist again. He did not want to examine me and when I asked about my increasing chest cramps on my left side. He suggested I have paracetamol and use heat which I do anyway so that didn't get me very far forward!! He also reduced the dexamethasone (steroid) to 6mg so that I can reduce it midweek and be off it for some of the week and also not be so high on thursday night. I also asked about the water tablet and he said to stay on it so I will as it definately helps my lymphoedema and swollen ankles as well as more importantly, my breathing. I will try again to see the chief oncologist and see what he says about the chest cramps and pain, the steroids and the water tablets..
We had a lovely lunch of paninis and coffee and by 2pm, my chemo was ready. This meant that I should have been ready for 4pm for transport to take me home again. The piriton made me sleepy and after I had reiki by Debbie, I fell asleep until 4pm when I was very abruptly woken up by the chemo nurse who just seemed to grab the long line and chemo line and take them apart and flush it all before I was even properly awake. Debbie went to check that transport were coming and was told they knew I was there and waiting for them. Time went by and the chemo unit which normally closes at just before 5pm kept on seeing more patients. I couldn't believe it. Some of those women had been there since 11am and were only just receiving their chemo at 530pm.
We had to keep chasing the transport but still they didn't come. It was a dilemma. I wanted to go home and so it made more sense to go home with Debbie but as the transport was organised I was reluctant to go as it feels when you fall off the system, you won't get back on it again.
The ambulance eventually turned up at 615pm and I got home at 645pm. Pete got my tea ready and then went out at 730pm for his morris minor night!!! At least the children behaved and were really good and peaceful about going to bed tonight.

2008-11-26T21:38:00.003Z

Gimme the Music, Gimme the Flowers, Gimme the Hospice - Give Me Love
Well the taxi finally arrived and went the longest possible way to the Hospice. It's commercial suicide really as he would only get the flat contract rate agreed between the taxi firm and the hospital. It was very strange and so I arrived late. I was surprised to find that there was a lady there about the same age as me with a smallish Italian accordian, a saxophone and flute. I began to dread what sort of music she was going to play. She works for a charity called music 4hospitals and hospices (or something like this) where professional musicians go round entertaining patients in hospices and hospitals and despite my fears, I actually enjoyed it. She played songs mainly from 1950/60s musicals, I think ( musicals are not my specialist subject) and traditional sort of folk music plus The Beatles. She played some beautiful music which was poignant and made one of the men cry which was upsetting for all of us but I suppose whatever music you choose it may effect someone. She did encourage us to sing which we did try but I needed the words. She had a lovely singing voice as well and somehow managed to dance and sing and play the accordian at the same time!!! She played 'The Gay Gordons', 'I'll take the High Road', 'Furnicular - Furniculee', 'These are some of My Favourite Things', 'When I'm 65',
some beautiful Russian and Italian music. Myself and one of the other female patients plus the volunteers and ladies who run the day care all joined in the singing. I'm not sure if the men joined in but they seemed to enjoy it. I sang and did cross stitch at the same time so was merrily multitasking too!!!
One of the other ladies who is usually quite cheerful and mentally very bright and well considering the state of play, was really poorly today. She had lost a lot of weight and strength in a week and was so unsteady on her feet which she wasn't last week. She kept repeating that her cancer had spread and seemed a little confused. She fell asleep with her drink in her hand and the decision was made to admit her which I felt really relieved about as she seemed too poorly and distressed to be at home. This news made her even more confused and they decided to take her out of daycare and into the hospice part immediately. We all waved her goodbye and hoped to see her next week but I think this is unlikely so feel rather sad. There is another man who is also going down hill very quickly and seems to be in pain but is reluctant to take anything and falls asleep at a drop of a hat. He was seen by the doctor today so I hope she managed to sort things out for him. I think I've been going to the hospice for about 10 months now and although there have been several deaths, they mainly happened in the early months when I didn't know our group so well. Even though you know that people are going to die because we are all attending this particular hospice daycare, I still felt very upset seeing these 2 people so ill and knowing that they likely to die quite soon.
Somehow after the music, we got into a discussion about taking morphine and lots of the others will not take it or find the side effects too much. I think I'm the only one who admits that I like it as it gets rid of my pain, helps me to relax and helps my breathing. Sometimes I wonder if my nursing background makes me less afraid of taking it or is it that I'm more afraid of pain. I know when I did my nursing training, we were told the elderly did not feel pain as much as younger people but I don't believe that to be true.
Anyway, better move on before you all get too depressed. I had Port today with my lunch as there was no sherry. The volunteer said they would get some for next week!!
In the afternoon, 2 flower arrangers came. I remember one of them coming before and she demonstrated what to do but didn't have time for us to have a go. This time she demonstrated how to make different christmas wreaths and then we had a go. I really enjoyed it as the sort we made you did not be so precise and accurate so I felt quite pleased with my efforts. They said if we water them, they should still be usuable in January!!!! Don't know where to keep it as it feels too early to hang on my front door and not sure where to store it so I keep it watered.
The 2 ladies from the Flower Arranging Club had clashing opinions about certain displays so I found it funny hearing them trying to be nice but hearing the strained undertones of their frustration with each other's ideas.. It reminded me of a programme that was on in the afternoon in the 1970s probably. It was called 'Houseparty' and was on ITV. It would feature the same group of women and would start off with a few of them sitting round the table discussing something and then the doorbell would ring and someone would get up to open the door and surprise, surprise it was Daphne with her new peg bag that she would now demonstarte how to make!!! As Daphne was teaching us all, the others would be going, 'oh I wouldn't do it like this, I always find blah blah etc'' and then the camera would swing into the kitchen and there would be another discussion about how to make a Christmas pudding with lots of ' I find that if you do ....' , 'oh no, this way is better'. It was all very civilised but you could often hear the undertones that some of these women really didn't like each other. Oh the good old days of tame daytime telly. It definately wasn't an incentive to skip school, I remember that much!! Does anybody else remember this programme?
I came home from the hospice by taxi which was lovely although I do hope I can get well enough to drive again. I really miss being able to pop out for things and gaving some independence. I would be a great danger on the roads at the moment though. What with my poor memory and getting lost halfway through my sentences but at the same time, I've got all these ideas firing in my head. I don't know if this is a result of the oxygen starvation or if it is the tablets that are interacting. Whatever it is, it is frustrating me and I'm sure those around me. It's fine to type as I can proof read it.
We had problems again with Woody and his homework again. We are going to see his tutors next week again as we don't understand what is happening and is causing us all a great deal of stress. Laura was also upset as she'd had a bad day at school. She'd forgotten her PE kit and her geography homework and got a sort of detention for her homework. It upset her as she had done it but forgotten to take it with her. I think it a case of missing their breaktime rather than a detention as such. However, the 7 of them were left alone and according to Laura, it was only herself and her friend who sharpened the pencils whilst the others didn't. Then the teacher didn't come back and so they were then late for their next lesson and nearly got another detention. When I phoned the tutor to make an appointment, I complained about the lack of supervision during this detention and the implications opf them being late for their next lesson when it wasn't their fault. She said a teacher is supposed to supervise and she would look into it but as she hasn't succeeded in getting the other tutors to do a homework plan for Woody, I'm not convinced this will happen either.
Today, wednesday, I slept in till 945am when the carer came in to help me get ready and get me breakfast. she then went away and came back about an hour later to do my housework. Very odd deployment of staff. Surely, it would be more sensible for her to have stayed on and done that. I forget the Council are involved in the running of the Carers. Sorry if I've offended anyone but think it would also be true if the NHS ran it as well. I can't see a private company getting a carer to come back within an hour - it is just not cost effective is it?
I had a completely district nurse today to take my blood and she had come from Dorset and there they flush and change bungs at a totally different time period to here and it was different in Kent. Surely, there should be just one definitive guide to caring for Hickman lines. I thought care was supposed to be research and evidence based so there should be just one way.
after this, Pete and I went shopping. We got parked reasonably easily and the queues weren't that bad so as I hadn't been out shopping for a month I could see how the recession is hitting people or are still holding out for even more reductions. We didn't buy that much as I've ordered a lot off the internet anyway. It was good to get out and go shopping. I really think that is my hobby now - expensive and daft as I seem to be obsessed at looking at clothes which I really don't need as I've got more than enough. My retro coat is being well used and is wonderfully warm and goes with all my scarves. I like to wear scarves as due to my weight loss the Hickman line is very visible in my neck. I got lots of static shocks again and accidently - honestly, it was accidental, gave Pete some too. We were out about two and a half hours and only needed my oxygen when we were in the food part of the shopping complex. I was exhausted when we got back and came straight to bed and spent quite a lot of the afternoon/evening there.
One of my friends who I used to work with came to see me and we sat in my sanctuary chatting which was lovely to be in private and in comfort. The other person who was due to see me who we had both worked with had a bad cold so didn't come which was a shame but I'm so scared of getting an infection again that if I can avoid the risk I will. Hopefully, we can meet up next week. My friend who has a daughter in the same year as the twins popped in tonight. She didn't know about the detention/pencil sharpening incident and somewhere along the line my cascade of communication had broken down and she didn't realise I was at home so will need to rethink that cascade!!
Would you believe, Woody 'forgot' to do his homework again tonight and we ended up having a big row which made me feel very ill and wheezy and caused me pain in my chest. I just don't understand why he is doing this. It is distressing him and us all so much and I can't see the advantage to him in not doing his homework as we get cross and he gets banned from doing things he likes so I can't see what advantage he gains as he gets less attention and not more. I feel he really needs some help in some way and hope we can get some help when we see the tutor next week.
I gave myself a fright as well later on as I couldn't find my water tablets and was scared what would happen if I couldn't get them for tomorrrow morning. We found them in the end in my other handbag and after some lorazepam to calm me down and help my breathing calm was restored but it was a late night for Laura and I haven't done all that I had planned.
Need to be up early tomorrow as carer coming to help me in the morning before the ambulance comes to take me for chemo.

2008-11-24T23:14:00.003Z

Busy Monday
I wasn't expecting an early morning call from my carer but I'd just resettled in bed at 8am when she arrived. Actually, it was probably a good job as I don't think I'd had a shower for a few days. She also made me breakfast as the effort of the shower had made me breathless and I hadn't taken my water tablet yet and I think I do still really need it.
After this, I spent some time in the kitchen repacking the dishwasher so it would wash properly and made various phonecalls. then my usual monday friend came and she tidied the kitchen and got the washing out the washing machine and into the tumble dryer - told you I was obsessed with washing!!! Then we made an attack in my bedroom to tidy things up a bit and managed to throw quite a bit away so i can see the floor and get to the wardrobe.
The hospice nurse then arrived to see how I was doing and was only here about 15 minutes when my friend from Oxford arrived so she left. Then the second carer of the day arrived to make my lunch. It felt a bit odd having someone make me beans on toast when I had 2 other people here.
I felt sort of confused with all this activity of people coming in and out of my house but very grateful for all this support.
After everyone left, my friend from Oxford sat down and ate the cream cakes she'd bought and I tried to make some more calls. It took 2 minutes to get through all the doctors' phone messages of 'choose 1 for appointments' etc to tell the district nurses I was home and to come on wednesday for my usual blood test. That seemed quite a lot of waiting to me.
I was also trying to get through to MacMillan Cancer Sales Department as I still haven't received any of the things I ordered on behalf of others after my Biggest Coffee Morning events. They are saying that they did not receive any cheques but I know I put them in the envelope. I couldn't use the cheques for any other purpose as they are all made out to 'MacMillan Sales' but I do know there was some confusion about some of the cheques as some people had addressed the cheques to 'MacMillan coffee morning' rather than 'MacMillan Sales' so I had to do some rejigging with cash etc so that I paid the right amount into the coffee morning fund and the rest to the sales department. I've the receipt for the coffee morning and that is for the right amount. I couldn't believe that MacMillan had made no effort to contact me so don't they value £100 of sales? I tried several times but kept missing the right person who was dealing with it and she missed me so will have to try again tomorrow. As I paid for my order by filling out the debit card number rather than a cheque, I'm having trouble checking whether it has cleared or not so will have to do that as well. This has sudenly become so complicated and it seemed so simple at the time!! The stuff from Breastcancer care arrived ages ago but as many people had ordered from both, I was waiting for the MacMillan stuff before giving it out. I will sort out the breastcancer care stuff and give it to you and let you know about the MacMillan things and if you did order, could you please check if your cheques have cleared. What a palava!!!
After all this, we then made another attempt at the bedroom and it looks much better now. Just needs a hoover.
One of Aj's friend's mums came round after school and cut all the family's hair (well not mine but not sure if starting to regrow or if just optimistic). Laura now has a much shorter and fashionable style and can still get it back into the all important ponytail. Woody looks so much better with shorter hair and AJ is still the surf dude. I felt relieved to know that my friend's opinion of the back of my hubby's head is the same as mine - 'a difficult hairline'!!! - so it's not my fault if I've clippered the back of his head unevenly, it's 'the difficult hairline's' fault!!! (and the fact, he holds his head on one side so never know whether straight is anatomically straight or how he holds his head, straight).
Pete went out to get food and our keysafe. Thank you David for contacting me about this. We now have a keysafe but Pete is still looking at the instructions and thought they were odd so may phone you if for some reason he can't figure them out. Think he was looking at the same time as doing something else as usually he is good at this sort of thing - just hope you didn't write the instructions!!!
I then tried to help the twins with their homework. I never did get round to phoning the school about why they hadn't noticed that Woody was so far behind with his history project. I thought they were checking it 2 weekly and his work hadn't changed in 3 weeks. He also was muddled when his english homework was due in so that has been a rush tonight for him so he is not happy. I'm quite happy finding out about St George and have learnt some interesting things about him. For example, did you know he was also the patron saint of Lithuania, Cataluna, butchers and sufferers of the bubonic plague!!! Rather an odd mixture!!!
Poor Laura is so stressed about her homework and spends so long on it and making sure she does it on time and to the best of her ability that it is really effecting her. No wonder she can't sleep. She is so determined to do her homework all on her own and won't ask for help from us which sometimes I think she does need to bounce ideas just to make sure she is heading in the right direction really. her project is on Geraint of Wales and I can't tell you anything about him but she has a big book on him so he is obviously very important and I think has something to do with St David but could be totally wrong as I haven't read her work, I was just helping her to understand some of the more academic words.
Came to bed about 9pm but chatted to Laura till about 930pm so rather late for her but I don't think she would have gone to sleep any earlier as she needed to destress first.
Tomorrow is hospice day and they've had to order a taxi for me because of the oxygen. I'm sure we've told our car insurance people but think that will need rechecking as well.
Thank you for your comments and I'm even more amazed now by how far across the world my blog is travelling.
Poor Pete is now trying to unblock the kitchen sink - not my fault - not cooked for months now but actually I think he is enjoying it as i suppose it is rewarding when it finally gets unblocked.

2008-11-22T23:50:00.005Z

Home
I did sleep well last night but it was punctuated by a very confused man shouting but I didn't get out of bed at all so the anti-sickness pill which makes you incredibly tired worked. Would like some at home incase I get desparate for sleep.
I did the morning tea run for the other 2 ladies - my posh lady wasn't awake so she missed out this time. I was really cold when I woke up which is unusual. The radiators were all cold and there was no hot water. I was quite glad as I didn't really fancy having a shower. Apparently, when the fire alarm went off yesterday evening, it tripped the heating off and someone forgot to reset it. Anyway, it gave me more time to pack my things slowly.
The preparations for going home were almost complete. The social worker reorganised my care for thursday as have to be out early for chemo. The OT found a very neat and much more compact wheelchair for me and the physio said he would shorten my walking sticks on tuesday for me and my name is on the list for transport as well. This time they have put down that i need a front seat or be in the back of a 4 door car. I couldn't believe the last time i had volunteer transport from the hospice, it was in the back of a 2 door micra!!! Definately, couldn't do that now and it was so painful last time that I was in pain for the first 2 hours.
Hubby arrived about 1030am to finish the packing and get it in the car and we waited for my sister, mum and Mags to arrive plus I needed my huge supply of tablets. They have to explain all the tablets even though I know what I'm doing. I've got so many tablets now I think rather than having a medicine cabinet, Ineed a medicine wardrobe now. At least this time I haven't been left short of anything. I said goodbye to all the ladies in the ward and it felt quite sad to say goodbye. You sort of develop a special bond in a small bay even if one of them is making you annoyed.They were all teasing me and saying 'who's going to make our tea for us now?' (Actually, it's not teasing - it's a long time to wait when they wake you up at 730am and breakfast and tea doesn't arrive till 830am and I really need my tea in the morning) I even felt really sad at saying goodbye to the posh and manipulative lady - just soft aren't I!!
I've found already that I don't need to be on continuous oxygen so that must mean the chemo is having an effect which is wonderful. Just wish it would take this feeling away in my oesophagus when I eat some foods. I suppose it took a while when I first had taxol for it to work on my tumour there so it is probably asking for too much on one dose to notice the difference.
We were finally ready to leave about noon and drove off to the pub. It is on quite a narrow road down hill and as we were going down it, a delivery lorry was coming up. Hubby pulled across the driveway of a house and the lorry went by but immediately stopped in the drive blocking the road off to my sis and other cars. We drove off but my sister said that the driver refused to move over the 30-40cm needed to get cars round it so they had to wait for about 15 mins while he unloaded. She had got out the car and explained to all the drivers it was too narrow to get through but they wouldn't believe her so kept trying to get by and then having to reverse back. Each time, they had to turn round or reverse back so they all waved and made faces at them!!!
We had a lovely pub meal and I pushed the boat out and had a sherry and a glass of red wine. Then we all came home. Overall, the house was tidy but what is it with the washing when I'm away. Yet again, there were piles of underwear and unironed clothes in piles around the house so got very stressed whilst we sorted it out. I think it took us women about an hour to sort. When I'm here the kids help me with this so find it so frustrating that they don't when I'm away. So I got a bit hysterical about this which must have really spoilt my mum's birthday and I really didn't want that to happen so feel very mean now. In my memory books, it says 'what do you want your epitaph to say' - I think mine will have to say 'became overcome with sorting black socks'. Blame my childhood - I was always washing my dolls clothes in my battery powered washing machine and hanging them out to dry and then 'iron' them. It really is an obsession with me. As soon as I got home, I made sure the washing machine went on!! Completely bonkers!!!
Spent some of the evening doing individual things with the children. I spent time with Laura looking for christmas ideas for me and her. Laura wants lots of Lush stuff and also wants glass paints and a vase to paint for me. That seems the wrong way round to give her a present that she then gives to me. I think I will have to buy this before christmas so she can then give it to me then although she is so stressed by her homework at present, she doesn't think she'll even have time to make the butterflies we were going to do before I went into hospital. This seems wrong to me that she has so much homework. For her english homework, she has to design a leaflet for a place to visit and of course, this is something that she likes to do so her marine world leaflet is going to be so huge and really a too bigger piece of work for a deadline of 4 days and she is getting really upset about it when it should have been quite a fun activity.
Today, Woody had footy training and came back rather muddy. We then spent the afternoon cooking together. Well, I sat on the stool and did little bits to help but mainly he did it all by himself even if it was guiness book of records length of time to rub the butter into the flour for gingerbread cookies. He also made some flapjack and a double jelly which has all disappeared now. He is now so much more confident to put things in and out of the oven, light the hob and stir things with the heat on. I know he enjoyed his half term of food tech and said he wants to do that as a GCSE option. He did get a special certificate postcard for his hard work in food tech. I just feel so proud of him and then it dawns on me that I won't be here to support him with his GCSEs and I just can't get my head round it at all. It's the odd things like that, that reduce me to tears.
Then I spent time with AJ looking through the internet for pressies. Everything he wants seems to be out of stock via post but apparently in stock in the shops so hubby and I are going shopping anyway on wednesday so have to hope it's there and he doesn't change his mind again. Now we need him to decide between some lego thing and a castle/fortress thing. Whatever, we do it will be the wrong choice!!
I did some brain training on my DS with Woody. I was older today but actually came out as my age. My record so far is 42 and my worst is 65!! It can't read my writing is my excuse. He comes out as much older - anywhere between 64 -72 but it can't read his handwriting either.
My poor sanctuary is looking a bit sorry for itself and has become cluttered but am stuck as we had lost a box which is now found. I've also brought things down from the high cupboard so I don't have to keep reaching up and down all the time and have it close to me. Aha - just had an idea about trying to tidy that bit but will need help. My week seems so mapped out, I'm not sure how I can get anything done on the memory/cross stitch side/life story front.
Tomorrow, we're off to see father christmas on a train so will get my daily sherry there!! It was organised through hubby's work so was really cheap. Will be good to do 'normality'.
Then it will be monday and the first day with being alone for some of the day. The carer is due about lunchtime as is my friend from Oxford so will have to see how I feel when hubby leaves for work as to if get dressed then or later. We've been trying to get a keysafe thing for outside but have had to order it for collection on monday but hubby can't do that till after work so have to hope I'm strong enough to get down the stairs to let the carer in.
It is so odd being home. I can't believe I've been away for 3 weeks and what has happened to me in that time. In other ways, if it wasn't for the oxygen, it feels as if I haven't been away at all.
Thank you for all your comments, texts etc. Am trying not to text people at present as have a contract phone and running out of texts so if you contact me and I do have your email address, I'll probably reply that way. Think though that I've lost some email addresses so if you have given me yours and I haven't replied please could you either email me, text me or leave it on the comments page here and I'll just delete it after I've copied it.
Can't believe it is going to be Christmas so soon. I like going out in the early part of the christmas period to look at the lights etc and see the christmas market and I'm not going out to any Christmas functions so feels very odd that my usual christmas things aren't happening.
Must get ideas off family for christmas - family please let me know especially as I'm trying to do a lot on-line. Will also miss the christmas food shop as I just like to have a quick nosey about to see what's what. Just don't think I will be well enough to go to the big Carol Service that my father in law organises tickets for each year and think I'll probably end up in tears so best not to even think about going. I'm not even sure I will be well enough for the big adult family christmas dinner either. Ideally would like someone to invite us out for dinner on Christmas Day though. We've not done that for years - usually have christmas dinner on our own and then are sociable.
Can feel a list coming on and as it is so late, I think I had better stop stimulating my brain and just go to sleep now.
Must make sure I sleep on my side tonight. Think I woke up with pressure sores as had sat up all night asleep and been sitting up for a couple of hours before that. The steroids are just ruining my skin.
Probably, will rejig this tomorrow as writing it after sleeping tablets and oromorph so who knows what secrets I've given away tonight.

2008-11-20T20:00:00.003Z

What Can I Do For You??
I've just come back from a very long day at chemo clinic. It was made longer as I had to wait for the ambulance to collect me both ways as I need oxygen. Apparently, if you need oxygen then you have to go by ambulance rather than a car.
The ambulance arrived about 10am and I got to the hospital about 1040 for my 1030am appointment. Not that it really matters as you usually see the doctor at least an hour after the appointment time. They had arranged for me to sit in the treatment area on the pull out chairs so was pleased as those chairs support my back and i can keep my legs up so my ankles don't swell. I thought I would spend this time doing my cross stitch but ended up doing my memory book for hubby which at the moment is in quite a fun area of my life so have enjoyed doing it.
I did manage to catch up with some of the other women that I usually see so it was good to catch up and they were pleased to see me.
I saw the consultant about 1130am. I did not see the chief one and I didn't see the point of asking when I like this one anyway. I was a bit surprised not to see the chief one but I can ask next week anyway. However, I was taken aback when he said 'what do you want today?'. I know I'm bossy and often demand things but I didn't think the responsibility was mine to decide what I wanted today!!! He was really pleased with my blood results. My protein levels are normal as are my liver and kidney tests and my haemoglobin is reasonable as well so I think I've given everyone a surprise that just 2 weeks and 2 days after my 'crash', my blood results are normal and I can walk without oxygen for a short distance and sit for about 15 minutes now without oxygen so it does all feel so unbelievable and if you looked at my blood tests, they would seem unbelievable as well.
He examined me and can't feel my liver so that is good and when he examined my lump, it is the same size as it was 4 weeks ago so that is really pleasing. My skin one today looks about 1cm across so looks smaller than yesterday and about the same size as last documented in my notes. We discussed me continuing on with my bone strengthener and as he is the man running several of the bone drug trials about the drug that I'm on, I think I should bow to his superior knowledge!!!! He feels that as I have had 2 years worth and there is evidence that it stays in your bones for some time ( I think he said 3-4 months), he felt we could miss that out for now and have the herceptin and restart taxol today. He did ask me about when I last had an echo done of my heart and I really don't know but said I think it could be a year ago. We seem to have an unspoken agreement not to do any heart echos on me as if they find my heart function has gone down then they will have to stop the herceptin and as we all feel that is keeping me alive, the risk seems worth it. He then ordered all my drugs and I went back to my comfy chair and had sandwiches for my lunch. I have just realised that no-one had made a decision about the dosage of the water tablets and I did tell him that the palliative care consultant wanted the oncology team to make the decision. Oh well, feel safer on them at home at this dose and must remenber next week to ask.
I started the pre-med part of my chemo about 2pm and they ordered the ambulance for 4.30pm. The pre-med consists of piriton that makes me very sleepy within about 30 minutes and the steroid, dexamethasone which makes me very lively about 4-5 hours after taking it so will probably spend quite a bit of time awake tonight. I take them for 3 days so will cut them back to the dose that I'm taking now on sunday. Also. they give ranitidine to stop stomach irritation which confuses me as the drugs are all given intravenously. I'm already on a 'stomach protector' tablet due to the steroids and the diclofenac so that's why I'm a bit muddled over why I need this as well. I know I don't tend to feel sick with taxol unless it is dripped in too fast but as I'm usually asleep this is out of my control as I said before they can't put taxol through the machine as it has a filter on it so the timing always seems a bit random anyway.
I also had the herceptin which causes me no problems apart from a runny nose.
I sat next to a lovely Polish lady about the same age as me and with a similar diagnosis but only just started the horrible secondary pathway. She was telling me the value of beetroot juice!! Of all the juices - why beetroot when I'm frightened of it.
I did have a sleep eventually and woke up about 430pm and the taxol was just finishing. The nurse flushed and changed the line and bungs and then I waited till 515pm for the ambulance. We got caught in the rush hour traffic plus there had been a crash on the motorway so didn't get back to 6pm and had more sandwiches. Hubby had dropped in and collected some of my things and had left me some creme caramels and 2 chocolate eclairs so that was wonderful and I really enjoyed eating 1 of each with my sherry. Quite deservedly, I now feel sick but hopefully, I can have the extra strong anti-sickness pill which makes me sleep so should counter the awakeness of the steroids.
Now have a delightfully, cheery lady opposite me but she is suffering with a degree of memory loss that she is aware of so that must be distressing. At least, most of the time I am unaware that I have forgotten something until someone points it out!!!!
Leave it at that for now. At least you know what happened today.

2008-11-19T08:46:00.003Z

Memory Boxes

For some reason, other people think I'm well organised and all my memory boxes etc are complete. Well, sorry to disillusion you but they are not. It is a work in progress and I haven't progressed as well as I would have hoped.

Some people have been asking what I have done or put in my boxes. As i have been writing this, I am rather taken aback at how much I have done or started and it all seems a bit over the top so I'm not sure I'm the right person to be writing this!!!
Here goes to what I have done/hope to complete -
I have a box for each for the 3 children, 1 for my hubby and a single box that they will all have to share. I have also bought a plastic box file for each.

In the plastic file boxes, I have put the letters I have written or received from each person including the home made christmas/mother day cards that they made at school and I had kept. Letters that hubby and I exchanged when we were living apart until we sold the house in Kent and I could move here. I'm so pleased we'd kept the letters as it is also a record of my pregnancy with the twins. I have just put anything that needs to be kept flat in these boxes.
The children have always had a separate file for all their school certificates so their 'star of the week' certificates etc are all in that file.

My separate box contains my nursing certificates, badges and other educational certificates I have got and other things that I only have 1 of. For some reason, I'd kept some hair from when I was 12 plus some from when I first lost my hair due to chemo. There are also photos of me from the local newspaper from my Guiding Days. I played Snow White aged 12 so there is an awful photo of me complete with black wig that I probably should have binned. I think the world had to be grateful that in 1973, there were not camera phones etc so there is no permanent record of my singing.
I have written the children and hubby a letter each. That's been the hardest bit I've done so far. I got the hospice nurse and social worker to read them to make sure I hadn't accidently written something that would really upset them or be interpretted in the wrong way in the future. The letters say about how I felt when I was pregnant, giving birth and their early days. It says a bit about individual things about them and what I like/admire about them and their special qualities and what it has meant to me. I have writtten a bit about how I would like them to act in the future but doesn't say anything like 'you must get married and have children' or 'you must go to university'.

I have just said about the qualities I think are important for them to get on with their life or live their life, like the importance of kindness, thinking of other people, don't live your life in regret, be confident, learn from your mistakes. My own personal views on things and also made it clear, hopefully, that it is my view.

To my hubby, I have written a letter about our life together and what special things we've done and how we've overcome difficulties and celebrated successes.

I have also written a few letters to other important people in my life - some family and some friends.

I didn't meet my hubby till I was 31 so I had a life before that which I would like the children to know about. Hubby knows about it but whether he remembers is another question!!! Therefore, I have written a sort of mini-autobiography which I really enjoyed writing and then a very mini version for the vicar to base his speech on at my Thanksgiving Service. Presumably, he will want to give a potted history during that service of my life and as I've had several different types of jobs, moved around a bit and travelled a bit, hopefully, it will be of interest to other people as well.
To tie in with this, I have made a photo album so that you can relate my life story to the pictures. That's my current project as I said in my previous blog entry.

In the actual boxes, I've put in photos of things that are special to me and explained why they mean so much to me like why certain bits of my jewellery are sentimentally precious (none of my possessions are worth anything in monetary value) and why certain ornaments are special. That again, gives detail about my life and what and why things were important to me like an old knitted cat and my charm bracelet.

I'm going to put in some perfume if I can hold of the one I currently use.

I have also used the Winston Wish cards that say 'I like you because .......' etc. I found some of them really difficult to fill in due to the age of my children and thinking they will have these as adults as well so it's difficult to find suitable words sometimes.

I have put in some special stones and shells from beaches we've visited.

AJ has asked for a certain photo of us together and something he made for mother's day once as well.

I have no idea how we got onto this conversation but all the children at present want to keep some of my ashes so the undertaker knows this and is going to arrange some special type of container for each of them. I have no idea when it happens if they will actually want to do this but it seemed important to ask. Actually, I think it was the undertaker that suggested we ask the children about my ashes as in her experience some children do want to keep them.

I have also done a special scrapbook photo album for each of them. I tended to group them into things like birthdays, action pictures, theme parks or holidays and write special words about how the pictures made me feel. That is still a work in progress but have got to recent events so they can do it for themselves if I never have time to do it.

I have also written in the pre-printed memory books -

Dear Mum - from you to me by Neil Coxon

Memories - Julie Pinnell

You can examine the pages via amazon to see if they are of any help to you. Some of the pages I can not fill in or seem inappropriate so have currently left blank. The 'Dear Mum' is a series of books but do not have a 'Dear Wife/Husband' and 'friend' did not seem right. I like the feel of the pages in this series.
For my hubby, I have used the Julie Pinnell book. It approaches things slightly differently and I think some of it is too americanised for me and the paper is shiny so I have had trouble with the type of pen I used to avoid smudging.

As I have had so much time to prepare for my death, I've done much more memory stuff than I ever intended to do and I expect will never be looked at properly anyway!!!
I have made each of them an individual and small cross stitch but I haven't finished my hubby's yet which upset me on the morning that my body decided to drown itself. I couldn't believe with so much time on my hands that I hadn't finished anything properly. I am aiming to do the cross stitch in the chemo clinic wait tomorrow but expect I'll just go to sleep or chat!!!

The other thing I did was to ask some very long standing friends - school and student nurse training day friends if they would write something for me to give to the family. They have all made a small photo album up and put some photos in and written things about what we used to do. The only problem is that everybody is far too polite about me and nobody says about how horrible I was or bad tempered etc. They all do say about my drinking habits in my 20s but that is as bad as it gets!! I just hope the children don't think I was some kind of saint as I don't want them to have this as a pressure - that their mother was faultless and not thoughtless. I really appreciate these little books of memories and the children, of course, find my 1980s fashion victim, hilarious.

2008-11-18T22:40:00.004Z

Part 2 - Hospice Life
I had a quiet sunday morning after having help with a shower. Then my friend and her daughter arrived with some flowers and some creme caramels. Her daughter is in the same school and year as the twins and like hubby and I, knew nothing about this tutor meeting on thursday as well. Her daughter said in the same way as my daughter said 'I told you the meeting is at 11am and we have to be there or else we get marked down as unauthorised absence'. So please, secondary teachers can you explain why we have to attend a 15 minute interview per child on a pre-determined day regardless of when we find out about this day, previous parent commitment or they will have a record of unauthorised absence. I've got my oncology appointment and hubby is working and can't get a couple of hours off with a few days notice!! After that rant, it was good to see them and now on wednesday, the roses are coming out beautifully and I've finished the creme caramels!!
After they left, I had a very good sunday roast dinner and rest. Then late afternoon, Heather arrived with her computer, candles, memory sticks for downloading my blog etc and some sample perfumes. Sorry - that sounds a bit of a strange collection but honestly it was all wonderful to receive and also to see Heather. She brought with her a print out of all the comments from the forums as I had such intermittent wifi access I couldn't access them. I was very touched by them all - thank you so much. She then downloaded onto the memory stick my previous 2 entries in this blog and has posted them as you can see. So thank you so much Heather for doing this and, as you can see, the entries have also now got comments. Please can you read the comments and if you fit into the 'friends' bit, can you please email Penny for me. Thank you!!!!!
Heather bought the candles as she knows I like them and the sample perfumes as I need to find a perfume similar to the Lagerfeld one I am wearing as I want to put this one into the memory boxes. I had not been able to find that perfume and I didn't know what else to do but try and find a similar one. We had a good laugh and chat and I felt much better after the stresses of the last few days.
Monday - I guessed i would be moved again and I was right but this time into a bay where the wifi actually works (hurray!!!) and with a lovely lady who is talkative and fun and sane plus a rather batty, posh lady who is very good at manipulating people. Why do I always let these sort of people manipulate me - I trot along doing what she wants and then I get annoyed that I've done it but then, of course, listen to the praise she gives me!!! We all know it is a game!!!
The fourth lady was, very unfortunately, the mother of one of the women I first met here via the National Childbirth Trust coffee mornings and who I used to see regularly in the school playground until recently. Her mum was only diagnosed with breast cancer about february this year but it had already spread to her liver and was very much at the end stage of her life. This felt really awful as she knew how long I'd been ill for but also I felt I was intruding in on this special last phase of her mother's life and I knew how close she was to her mum who was only about 60.
The co-lead decorator of my bedroom sanctuary also visited me which was lovely and I know she took my washing away and did other lovely things for me but have forgotten now what they were - how awful of me to forget!! Thank you - you know who you but what name can I give you as it would be a lot easier to name you one way or other!!!
I spoke to the palliative care consultant and we agreed I would go home on friday as hubby is working monday, tuesday and is busy wednesday (getting the house ready for my return maybe???) and I'm off to the chemo clinic on thursday. I spoke to his secretary today and found they hadn't cancelled this thursday's appointment so am going up to the main hospital for my herceptin and bone strengthener and to discuss future chemo. I really would like to restart the taxol as my skin secondary has already doubled in size and I have the occasional chest pain and odd feeling when I swallow so don't want to be off chemo for too much longer. It will be 4 weeks this thursday that I last had chemo. Scary how fast time goes.
In the afternoon, I did quite a bit more to the photoalbum of my life. I'm still aged about 7 -10 and my mum obviously had an obsession with cutting my sister's and my fringe. They are so short - no wonder that once we had our own opinion, we both have always had hair that covered our foreheads. That's why it felt so abnormal when my post-chemo hair wouldn't grow downwards only Marge Simpson upwards. Mum does know our feelings about our short fringes - in case you are worried. It's a standing family joke!!
In the evening, the family came to see me and I played nintendo games with the twins so it seemed more like a family evening. At about 10pm, I got a series of texts from Laura saying she couldn't sleep and she didn't know what to do and daddy didn't know what to do. It was really heartbreaking as I didn't know what to do either and I just felt I was the main cause of her being unable to sleep even though she said I wasn't. I know quite a few of my friends daughters' are all having trouble sleeping - apparently it has something to do with hormones. It still didn't help us and I think we all ended up in tears.
Tuesday - we got woken up at 745am this morning. Usually, they wake us up with breakfast at about 830am so felt really cheated of sleep. I did the tea run for the 3 of us - come on, all of you would have done the same. You can't really go and make yourself a cup of tea and then drink it in front of 2 other awake but bedridden women could you?
My friend's mum looked awful but was answering my questions and seemed to be very peaceful and comfortable and I just hoped that they would move her to a sideroom today for her and her family's sake.
After breakfast, I had a shower on my own - unless you count the portable oxygen. It is easier to manage that here alone as I can spread my stuff out over chairs and sit down in the walk in shower whereas at home, I have to clamber in and out the bath and the room is so tiny, there is nowhere to sit unless I sat on the loo seat which never seems appealing.
I had a bit of a rest and then teetered up the slope to Day Care. I hadn't been there for 4 weeks so it was good to be back. Gave the men a fright as I had no wig or make up on today and have lost more weight so they saw me in all my near bald glory! and I didn't get any compliments today!!
I had a lovely aromatherapy session and was about three quarters way through my reiki when I could voices outside wanting to talk to me now. I couldn't concentrate so we had to stop and all it was about to see if i knew if hospital transport had been booked for thursday's appointment. AAAARRRGGHHHH - I'd asked the hospice's ward clerk about an hour earlier and she told me it had been done so why the nurse couldn't have asked her that I don't know. I couldn't then get back to the place wherever reiki takes me which was annoying.
After lunch, I suddenly became overcome with tiredness and teetered back down the slope to my bed to find the workmen fixing the loo washer very noisily in the 'quiet - do not disturb at your peril' hour, so, of course, couldn't then go to sleep!!! I had a rest and then saw the physio for my stair assessment which I passed. The problem is, yes, I know I should only go that slow, but at home, the temptation is to go quickly and that's why I get so short of breath. I'm not a slow person - I find it very hard to do anything slowly.
My friend from just outside of Portsmouth came to see me at 3pm (again, please can you give me a name I can use on the blog - thanks). She also got manipulated into making a cup of tea for my posh lady. I was so glad she was here as it helped to distract me from the deterioriation of my friend's mum and also it was good to have a chat. She has bought me a lovely colour heather with a little penguin tucked in the pot.
On the subject of pressies, I forgot, I think to say thank you for the helium balloons that I got last week and are still flying high - even the penguin one - who says penguins can't fly?? Also, the Gordon Ramsey choccies are sublime.
I've just remembered that Heather has tracked down some of the Lagerfeld perfume so am really grateful for that as apparently, it is not made anymore. Trust me to find a perfume 'that is my signature' and presumably no-one likes it as it is not made anymore!!!
This evening, it all got rather tense in the bay. I was involved in the live secondary breast cancer chat when my hospice nurse who sees me at home arrived so had to stop that which I didn't want to do and could see all these questions being asked which I couldn't respond to so will try tomorrow to write here about memory books as that was one of the subjects but too late to do that now.
We talked about going home and how hubby, children and I, will cope. I think we will just have to see how the weekend goes first and take each day as it comes. My friend (again what name shall i use?) from nurse training days is coming on monday so know I won't be alone all day plus the hospice nurse is coming then as well. At this point, it became clear that the lady next to me was very much at the end and I felt awful as I really felt I was intruding on their grief and all we could do was close the curtains - not much protection is it? My hospice nurse spent some time with them as she knew them and then left after we agreed she would see me on monday at home. Home - I didn't think 2 weeks ago I would be saying that - wowee!!!
I became a bit wheezy so had a nebuliser which then vibrated itself onto the floor with a huge bang. It does work still but has cracked so I think all the fundraising my hubby's friend has been doing with his marathons is going to be used on getting a new nebuliser now. Sorry about that - to another nameless friend. Unfortunately, this happened about 1 minute after the lady died so felt doubly awful that I was now really intruding on their grief. A few minutes later, the posh lady was going on about having the lights dimmed and was asking that I did it. I just said I was sorry that I was too wheezy to walk - I wasn't going to disrupt the family's time with their mum/wife. I will have to explain in the morning I think.
Now it's after midnight and a wee tad late for bed but it's been a bit of an evening.

2008-11-16T21:31:00.000Z

Hospice Life

It was a long and painful journey to the Hospice. For some reason, ambulances are not allowed under a certain railway bridge but buses go through. Surely, a bus is much bigger in all dimensions than an ambulance? This meant that we got held up with school traffic and then came round the long way via the motorway. I presumed I was their last job and they were trying to spin it out but no, it was only 330pm and they didn’t finish till 11pm.
They had ordered a stretcher for me which was good in that I could carry more on my lap but bad in that to be able to breathe properly I needed to be upright which then meant my legs were at a 90 degree to my body which severely pushes my hip into a position that hurts.
When we arrived at the Hospice, I was back into Bay 1 which is where I was last time but had the bed diagonally. I could see the bird feeders and there is lots of activity there including bluetits, greenfinches, chaffinches and some kind of yellow bird with a black cap (?black capped yellow hammer - or is that a made up name!!). Unfortunately, there is also a wood pigeon that frightens all the other birds off and tips the seeds to the ground so that it can get some. There is also a squirrel which appears to be unable to get in to the bird feeder but does the same thing and tips it up so it can get hold of the seeds via the ground!!!
I asked for some portable oxygen so that I could walk to the loo as I was now right beside it. There wasn’t any!!! Or the only portable oxygen there was, was the emergency oxygen so not portable for me. Apart from that, it was lovely to get back to a place where I knew I would be looked after and where the nurses although still short staffed did have more time for you and I wouldn’t be living in fear of catching an infection or suffering from starvation or dehydration and the food would be edible as well. It’s not that I’m extra fussy - well, I am - but I always thought food and drink is compatible with life!
I know I was a bit of a nuisance Tuesday night as I had too many visitors. We had planned for hubby and the children to come and see me as their eldest paternal cousin was off on Sunday to Australia for 6 - 12 months so we could all say our au revoirs. Then 2 of hubby’s friends came as well so I’m not sure I started off on the right foot here. Hubby’s niece had bought with her the books on Bangkok and Australia and so could show me her plans. She is going to stay with some extended paternal family in Melbourne and it all looks very exciting and I’m very jealous!!!
I was dreading saying ‘goodbye’ to hubby’s niece. This would be the first time I have said ‘goodbye’ and knowing I would never see them again. I tried really hard not to cry but couldn’t. Luckily, my friends managed to distract us both before we all came over emotional.
It is such an odd feeling saying ‘goodbye’. Should I live in hope that some miracle happens and that I am here next year when she returns or do I and her face reality? Actually, I feel I’ve accepted the reality of death and it is now a case of sooner than later but others haven’t. I’m not saying I haven’t given up hoping or fighting to live as long as I possibly can, it’s having a different mindset and adjusting to it.
That reminds me, on the ambulance trip here, I had a phone call from someone who I’m not sure whether they did not understand or accept that I was so ill last week. They started off by saying to me “I’m sorry you’ve been a little ill but glad you’re getting better now”. I don’t know whether it was said like that in case it upset me to acknowledge how ill I was last week or was it they couldn’t say the words “you were seriously ill” or “nearly died”. Even though I hate eupherisms for the word “death”, “ a little ill” didn’t feel the appropriate word either and makes me feel that what happened is not being taken seriously by that person. Is that because they can’t deal with it?
It makes it very hard for me when I do want to talk about my future limited life and death and how ill I will be before I die when people won’t even acknowledge that I’ve been very ill, let alone am going to die.
I have to live with this knowledge and I suppose it is easier for me as it’s my life and I’m not being left behind to deal with it than those who will have to pick the pieces up and carry on with life without me. It just limits my conversation with people if they are uncomfortable to even acknowledge my serious illness let alone talk about the real issue of death and I think it prevents then being able to support hubby and the children at the moment which they do need.
Anyway, after they all left on Tuesday night, I settled and slept well and did manage with help to get out to the toilet with the unportable portable oxygen.
Wednesday - the portable oxygen arrived and I was quite settled on 2 litres/min.
Again, I was in trouble as had a lot of visitors spaced out over the day so we couldn’t finish the admission paperwork. It is important to my emotional welfare to see people and actually, the hospice staff do acknowledge that, it is me feeling guilty about making too much noise for the others in the Bay and making it harder for the nurses to get some of their work done.
My childminder and hubby came in the morning and it was wonderful to see them and we had a good laugh but suddenly after lunch, I just got overwhelmed with tiredness and had to be helped into bed as I was all shaky. Painwise, I should have listened to the registrar and gone straight to the 80mg morphine twice a day rather than struggle on 60mg so she changed that and also took blood so we could start again in seeing where this crucial protein level was. I have always found heat really useful in pain control for my hip and spine secondaries but due to health and safety I’m not allowed to use my wheat bags. The Friends of the Hospice have bought these cupranol (sounds like wood preserver to me!!) heat pads which you stick on your clothes and give out heat for about 12 hours. They are wonderful but a bit awkward as they are heavy and tend to move around a bit and also looks like I’ve got a thick wad of tissue stuck to my side. It’s better than keep slugging back the morphine and gives usually the same amount of relief from pain. The other thing the registrar told me to do was if I was struggling with my breathing was to take lorazepam as it not only relaxes how you feel but does help open the airways as well so I have started to take one on the odd occasion when I feel my breathing is struggling.
Thursday - my sister bought my uncle to see me which was wonderful. As I said before, it is lovely to see him in an adults only setting so it was good to be with him, my sister and hubby. I felt sorry for her though as it was a long drive but she said she didn’t mind. My physio was trying to reassure him that he wouldn’t regret having his hip replaced as he is rather worried about it and has heard some scare stories. It will be a relief to the rest of the family when he does have it done as he was previously so active and now has a lot of trouble walking and driving even short distances.
Spent the afternoon with the student nurse trying to fill out the admission forms and trying to make head and tail of the abbreviations. I got good news about my protein level - it is now only 1-2 points below normal so that feels miraculous as well especially when she told me what it had measured previously -no wonder the doctors at the hospital were being cagey as it would have freaked me out.
Had a quiet evening.
Friday - I saw my friend and the vicar and my hubby, plus the occupational therapist to talk about bath aids and stair lifts. I also saw the social worker about trying to change my care package so that I had someone come in at lunch time on 2 days to make sure I ate something and that I wasn’t on my own. I am now very scared about being on my own and we need to reassess at home who has keys or whether to get a keypad so that people can let themselves get in and out as I can’t go up and down the stairs all the time.
After lunch, my niece (Magnolia) and her boyfriend came down from Essex to see me so I knew that would cheer me up. It seemed very inappropriate to stay in my Bay with 3 very ill and elderly ladies and unfortunately, the Bay can smell quite horrible at times so the social worker found us the visitor bedroom to sit in. This was down the end which is supposed to be wifi enabled so they did spend some time trying to get a good signal and found a place just behind the door!!! Not much help but it is improving so hopefully, I can get in there sometimes to post on the internet!!!
Then after school, AJ and Laura came in to see me and hubby took Magnolia and her boyfriend back to the station to get home.
I was so tired as I’d walked to the visitor’s bedroom and sat there for a couple of hours and then had moved up to the Day Room for the evening meal. When it was time for them to go, I tried to stand up to go back to bed and my legs wouldn’t hold me up at all so hubby had to get a wheelchair to get me back the short distance to my bed.
After they all went, I was really tearful. I was too tired to get undressed and couldn’t even face having someone do it for me so had some oromorph and lorazepam to calm me down and help by breathing and pain. Life felt so unfair. I feel so hard done by. The other women are all in their 70s which although may still be considered young, it is not the same as being 46 and facing death when you also have a small family.
I also feel very misunderstood by the hospice staff. I think a lot of this is my own fault as I’m so determined to be independent that they don’t tend to offer me help and so then I get upset when they assume I can do something that I can’t or that I can walk further than I can. Just because I did it one day, doesn’t mean I can do that the next. It also means that I feel I miss out on the psychological care but I probably put a barrier up by being cheerful as I’ve got used to “putting a brave face on” as I don’t want the children to know how much pain I’m in or how much I’m crying inside.
One of the ladies is so confused now and spent the whole evening crying out for her parents or for other presumably members of her family, one of which just happens to be my name. Each time she calls out, the other lady who is becoming increasingly confused answers her and then this sets off the man in the sideroom. I just hoped I was going to sleep tonight with all this noise.
Saturday 15th November - I did not sleep well. I think my brain is trained to ignore certain noises but not when your own name or ‘mum’ is being constantly cried out. I think anybody who has been a nurse or visited a place where there are elderly people notice that they frequently ask for their mum and that just rubs it in more that I won’t be here for my children.
3 of AJ’s friends’ mums came in to see me which was good and gave me a lovely distraction from the depressingness of the Bay. Then hubby and the children came in which was lovely. I played some Nintendo games with them so that felt like ‘normality’ was being maintained.
After they left, I was really tearful again. I really felt ignored and misunderstood by the hospice nurses. Luckily, one came and found me and when we discussed it, it is really that I do give this impression of being capable so that they don’t always offer me the assistance I do require as I look as if I’ve coped easily on my own which is not the case. As my GP said, I am a determined and stubborn woman and that means I give a false impression of my abilities when I’m ill as well as covering it all up for the sake of the children. I’m also not good at asking for help and tend to feel these really ill women deserve more care than I do.
Anyway, after this I felt better especially as they offered me a sideroom so I could get a break away from everyone in the Bay and that the nurses understood I wasn’t as strong as they thought.
Hubby’s friend’s came to see me later and helped move my stuff into the sideroom and bought over some sherry and lovely choccies so I had a very happy evening.

Labels - hospice

2008-11-16T21:30:00.000Z

The Rest of October 2008 Half Term

What a higgedly- piggedly blog it’s become!!! Never mind.
I can’t get internet access from my hospice bed and too worn out today to get out of bed and to the place where the intermittent wifi signal is, so have asked Heather to download this via the good old memory stick and post it on the blog. This means that I’m relying on a fuzzy memory that I only got as far as Monday half term to tell you what we did before I was ill. Oh well, I think you’re used to my disorganised organisation now!!!!
Tuesday - we got up early as had to get to the London Eye for our 11am ‘flight’. I know British Airways operate it but it is hardly like flying is it? Poor AJ was frightened of the thought of going on it as he’d overheard my conversation about a friend who couldn’t cope with the height and spent the whole ‘flight’ lying on the floor so he was scared. Heather explained that it wasn’t scary and he listened and believed her whereas I think he thought his parents were just trying to trick him into going on it. So another big thanks to Heather or we’d have never got him on it!!!
As a disabled person, we were able to access the fast track system so didn’t have to really queue to get on but I’d ordered the tickets by phone so we had to collect them first which did involve queuing in a badly thought out system. On the way out of the queue, my walking stick got kicked by a young, fit man and I nearly fell over. It got really caught up in his legs, I thought my stick would break and yet he still didn’t stop. I shouted after him and my hubby chased him and shouted at him and trod on the back of his ankle for. There is only so much you can see your wife tolerate before you take revenge.
After that we got into our capsule and off we went very slowly. AJ was really excited to see the Houses of Parliament and Big Ben. I’m not sure what he knew about them but it was obviously something he knew about. Woody could see the Wembley Arch so that pleased him. Laura just enjoyed the ’flight’. It was a clear day but there was mist so we couldn’t see as much as I’d hoped but it was still a very enjoyable experience.
On the South Bank there were models of Salvador Dali’s paintings which were interesting to look at but impossible to photograph. Laura wanted to go to the London Aquarium but the queues were horrendous and that wasn’t why we’d gone to London.
We then went off to London Bridge Station as hubby wanted to go to the Design Museum.
There were no signs from the station along Tooley Street to the museum so we followed the map but it was a long walk. We passed the queue to the London Dungeons - it was unbelievably long!!! Has anyone been? Is it worth the wait and expense? We eventually turned off Tooley Street to walk along the river bank and stopped by an odd looking glass building opposite a sandwich bar where hubby and I could buy tea and we all could eat our packed lunch. It was so unbelievably warm and great to be able sit outside and eat. Hubby took AJ inside this glass building with the staircase on its outer wall to use its facilities. I’m sure some of you who know London well, know which building I mean. The new London City Hall. Apparently, there is a very good map of London on the floor and the people are friendly and the facilities are clean!!! I took a great photo of hubby stuffing his face with his roll with Tower Bridge in the background and then took another one where he looked handsome!!
We then carried on our way to the Design Museum. It is well hidden in an old warehouse area that has been changed into business and retail outfits. Put it this way, I’m glad the children were free and we got one adult half price as it was very small and not what we expected at all. The book and shop were great and I want to look at the website soon as it has some good books and gadgets in. Woody bought a book about the history of Lego there (honestly) and got a lovely reusable, black bag as well.
The rest of the Design Museum was a disappointment. They may have a huge area for storage but not a big display area and we ended up seeing a lot of chairs and crockery and cutlery which was not interesting for us adults or children. There was an exhibition by a psychedelic artist who illustrated the Ugly Bug Ball which was rather amazing on the eyes.
After this, we were so close to Tower Bridge and as it had always been one of hubby’s ambitions to walk across it, we did walk across it. Hubby was amazed by how narrow it was and the children thought it was fun as well. This then led us onto the Tower of London area and by now I was exhausted.
There is something about us and the underground at Tower Hill. We can never find the entrance and by the time we’d got on the underground, I was shaking with exhaustion.
No idea what we did Tuesday night but I think it was a quiet night in!!!
Wednesday - hubby took the children to the British Museum and I just lounged around the house in my PJ’s until noon waiting for the water to reheat as I’d manage to waste a whole bath of hot water by adding too much cold and running the water tank completely out of hot water. Sorry Heather.
We then had lunch and Heather took me out to her nearest M and S to buy food and to Peacocks directly opposite to buy Laura a new fleece so hardly an exhausting day. In the evening, Heather and I met up with 2 of her friends for a lovely pizza and chat. It was great fun and I’ve promised to put their names in my blog so thank you Dee and Margaret. It was a lovely evening and you were all such fun to be with.
I know it wasn’t a late night but on Thursday when I woke up, I was still tired but we were due to meet with my sister and her 2 youngest today so had to really get up and going.
I’ve never been to the Natural History Museum at half term before but again, it was so busy. We met my sister quite easily and she went off to get me a tea whilst hubby took the children off. Why does it always happen to me? I sat down on a chair which promptly half collapsed under me. Good job I was over 3 stone lighter than this time last year or I might have gone on the floor. It just shook me up and I needed some oromorph to get the pain out of my hip. I did point this out to the manager who got rid of the chair and had words with the café area’s manager as he said it should have been checked this morning. Thing is, it might have been but someone may only have just broken it. It wasn’t the best start to my already shaky morning. I think I only saw the café and the shop as I had no energy to go elsewhere.
Mid afternoon, we decided to go to Covent Garden to see the street entertainers. It had started to rain so us adults stayed under the covered part of the market and the children watched the entertainers and as usual, I needed a cup of tea so us adults went to the Transport Museum’s café and squashed up on a very odd little sofa.
It was then time to go home via MacDonald’s and I just relaxed in the evening and then it was Friday!!!

2008-11-12T20:43:00.000Z

Coming Back For Air
As you can imagine, by now I was thoroughly dispirited and could only feel that my only hope of seeing home would be for a few hours as the registrar had said she could not see it was possible for me to recover from this to be well enough. I really had also lost my fighting will and felt that every tie I talked to hubby, he was just not taking the situation seriousness. He’d tell me I’d been there before and had got back again. “Yes“, I’d say “but not from an oxygen saturation of 60%, needing 15 litres per minute of oxygen or having a blood pressure of 80/40 and having blood protein levels that were too low to hold my cells together”. He felt I was too negative but said he’d explained to the children how serious this time in hospital was.
Friday 6th - I was actually beginning to make progress. I’d got my oxygen requirements down to 10 litres and I could get from the bed to the chair but no further. I could also last a few minutes off oxygen to eat independently and I didn’t feel I was drowning anymore. The water tablets were working during the day but in the morning I could see that my ankles and arm were swelling and that my wedding ring wasn’t as loose so I wasn’t there yet. I was trying to be more positive but all I could feel was that I’d had all this time to get things done and they weren’t and this made me a failure.
At least, I was now getting help with a wash even if the student’s nurse’s understanding of the function of lungs and approach to parents wasn’t entirely up to what I thought a second year student nurse should be.
The student nurse was cross with me for having a cluttered bedside table but I explained what choice did I have? I had to have bottled water as half the time the water tasted disgusting or we didn’t have any and it wasn’t my fault that the builders who had rebuilt the ward had put the reset nurse call button just above the top of locker height so that you could not use the top at all. NO, I COULD NOT BE OFF OXYGEN FOR 5 MINUTES WHILE YOU FIDDLE FADDLE ABOUT TRYING TO CHANGE THE OXYGEN CONNECTOR FROM MASK TO NEBULISER. What do they teach these student nurses? Not communication skills, not body language and now not anatomy and physiology - what do they spend their 3 years doing?
All over the weekend, I was so pleased for the help and support I got from my family and friends as I would never have got better without them. I was also grateful to everyone who either helped or volunteered to help with the children as that made such a difference to us and especially to hubby who was laid low with the same chest infection.
Sunday was sad as I had to say goodbye to my sister and mum who needed to get back to their homes. My sister had been with me since Thursday and my mum since Wednesday and I would miss their help and company.
The weather was also in the same sad and angry mood as me.
I’ve said before that the quality of the rebuild of the ward was poor and the weather was definitely a test which it failed abysmally. The poor girl who got admitted to that bed was very scared anyway but then had the added misery of a new double glazed window which had not been fitted properly and so not only had the added noise of the wind screeching through a gap but also got wet as the rain came in. Unbelievable in this day and age that a builder could be so incapable of fitting a window, fitting door locks and making a wet room with the floor sloping the wrong way and I’ve just realised I have forgotten to tell you about the fuses. If I knew the name of the builders I’d name and shame them but I don’t, so all I can do is call whoever is responsible for accepting a new build in that condition, a complete pillock - there are many unsuitable words that spring to mind but as I don’t know who will read this, I will keep the language polite.
When I arrived on the ward, the light didn’t work and by Monday morning the nurse call button had also given up. The lady next to me said it had been like that when she was there last week so on Monday 2 maintenance men turned up. This will now sound like “right” said Fred, “get another ladder out” (- not the “I’m too sexy for” version.) The 2 men looked at the light and the nurse call button controller and declared that it was a fuse and 2 electricians were needed. You pay peanuts…………….. The 2 electricians came and took the first panel off and one of the men was immediately hit by the underneath panel which had not been fixed in properly!!!!! Somehow, this then prompted the new fuse to fuse the rest of the bay’s nurse call buttons, overhead lights and the emergency call button. This was obviously not the first time it had happened as we all got issued with remote door bells. What makes that statement work is that I had the number 7 on mine so it was obviously expected to happen in more than one bay as well as the bay had 6 beds in!
This now meant a senior electrician who was trusted enough to come on his own arrived and changed a main fuse and hey presto, light and sound was returned to Bay 2.
Monday - I was definitely feeling better and the morning swelling was less. Hubby arrived and this time he actually managed to see the doctor. This doctor was very confident but had a lovely manner so the communication skills taught in medical school are working there then. I thought he was a registrar but in fact was a F2 (SHO - means that he left medical school 2 years ago) but he seemed to know what he was talking about and importantly, was not afraid to tell us when he didn’t know something, which is a quality you never used to see or hear so we admired his honesty. He explained that I’d been very ill and had made a remarkable recovery quickly but the future was looking better. Hubby asked how I could have been walking around London last week and been quite well and then 5 days later on tuesday be near enough dead and even in a few hours deteriorate so rapidly. He explained that in older people, their bodies shut down slowly so you see a deterioration over a longer period of time - a sort of slope on a graph but in young people (relief to know I’m still young at 46 as I was beginning to wonder as most charities don’t consider me young anymore), their bodies fight and fight until it meets a resistance like an infection and then just crashes so the graph looks like a vertical drop. He said that is what they thought had happened to me that my protein levels had kept up until an infection had caused them to lose their level and the cell walls had collapsed allowing the leaking of the fluid into my lungs. As this water was in my alveoli at the far end of the lungs, they couldn’t put a drain in to get the water off. All they could do is to use water tablets and steroids to reduce the inflammation and this is what they had tried and it had worked. Now was a time to see if I could tolerate less oxygen and become stronger so that I could get up the stairs and manage at home. It was good to hear the same story from the doctor and be together hearing the news as so frequently due to commitments, hubby rarely was able to attend appointments with me and at the hospital it was almost impossible to see a doctor when he was actually there. Things seemed brighter.
It especially seemed brighter when I saw the palliative care doctor who felt that I had not crossed that critical protein level and that my protein levels were acceptable and weren’t being artificially boosted by dehydration which is what I’d been told by the specialist registrar. She also wanted to get me well enough to get home and was sure the hospice could rehabilitate me to that level. I was also anxious to get off the morphine pump as it seemed to be giving me less pain relief and not more and I was taking more of the oromorph. She also suggested that I took lorazepam to help my breathing at times when I was struggling as it would not only calm me down but opens up the airways as well. That made me feel better as previously I’d felt I’d only use the lorazepam to calm me down and not realised that it had a physical effect on my lungs as well.
I was now down to 5 litres and could walk around my bed.
Tuesday 11th November - I saw my consultant and my hubby arrived at about the same time too so that was good. My consultant seemed very pleased to see me and gave me a little pat on the arm. He was pleased that my chest sounded so much better and that my oxygen requirements were less and that he could see that I was well enough to reach Christmas. He was confident that I could be rehabilitated to a level where I could cope at home and even could see that chemo was a possibility. He left with a little wave and we both felt so relieved. Now, I needed a hospice bed. 10 minutes later, I was told there was now a hospice bed - whoopee!!!

2008-11-12T20:41:00.000Z

Suffocating or Drowning - is there a difference?
I know in my last post, I was at the beginning of telling you about our wonderful and lovely trip to South London and how it was all full of excitement and energy and it all sounded so hunky dory and then there was a lull. Followed on by an even longer lull until some of you who are on our address books or who access the forums got ominous texts and messages about my latest escapade so now what do I do? Do I carry on telling you about London, knowing I won’t have time to post about that and leaving you all waiting to hear what has happened since arriving at home or do I just go straight onto the drowning/suffocating drama?
I think the drowning/suffocating escapade wins as then someone else can always add the London bit on afterwards as they were there then and weren’t when my body was busy drowning itself.
I knew something was not quite right on Friday 31st October but thought nothing of it at the time. I don’t normally make a habit of missing trains whilst sober (- drunk - maybe another story) but not at noon and with a hubby and kids in tow!!!
We’d rushed down to the local railway station to start the journey home with a few minutes to spare to find that the train to London had been cancelled!!! We then spent the next 30 minutes sitting and waiting for the next train. That was fine and then we had 20 minutes to wait between the train we got off and the one taking us home. We were travelling on a group ticket so were supposed to be altogether. Hubby took Laura onto the train to save seats and I took the boys to buy comics which we did successfully and I sent them off to join hubby and daughter on the train departing for home. I never checked or don’t remember checking that they had actually got to the right platform. I was then supposed to get tea for us adults and get onto the train. As I got to the ticket gate, my heart missed a beat. That was my train to home just going round the corner. Had the boys got on the right train - platform 9? (Hoped there was no platform nine and three-quarters or else they may have gone off to Hogwarts). Had they gone off with my cross stitch and memory books safely and my new Nintendo DS?
After frantic phonecalls, we established that the family were altogether apart from me. The guard had advised them to stay on their train till home and the next train leaving London would be the fast one and if I caught that then they would only have about 15 minutes to wait for me.
I have no explanation of what I did after I sent the boys off to get the train. I’m just grateful they were sensible and got on the right one!!!
My journey home was also not without incident. I was a bit bothered that hubby was travelling with 3 children with only 2 tickets of a group save and I was alone with 4 tickets!!! The guard on hubby’s train was kind and understanding whilst mine was too agitated to notice I had the wrong kind of ticket!!!
I was sitting forward facing in a quiet zone carriage and was busy looking at my cross stitch. I’d noticed the guard seemed flustered as he was checking tickets and didn’t seem to want to wait around to see railcard’s but apart from that seemed OK. Suddenly, there was an announcement over the tannoy “this is the guard speaking. I need urgent police assistance”. I looked up as did everybody else in the carriage to see the guard talking to 2 young men who were not acting aggressively or speaking loudly standing in the doorway of the train. True, the train was due into Winchester in 5 minutes but I didn’t realise undercover cops actually did patrol trains or was this all some kind of stunt??
A man of about 40 started walking down the carriage carrying a Bag For Life - no leather jackets insight then. Undercover cops dress and seem different to when I mixed with them in the 1980s as a student nurse. The guard called over the tannoy “it’s OK. I can see a policeman now” but 2 other men with little rucksacks on their backs, carried on walking towards the lads and the guard. They told the single policeman they‘d handle the situation and sent him back to wherever undercover cops hang out on trains.
At this point, the young lads became a bit more agitated and were proud to announce that they were not allowed out of Winchester and were on probation and were refusing to buy tickets for the train. At Winchester, the 2 men grabbed the lads by their elbows and marched them off the station!!! So these questions sprang to my mind - are there always undercover cops on trains from London? Was this some kind of practice drill? Why was the poor guard sent up on his own? What was happening?
This occupied my time till I got to my home station where I did manage to get off at the right place and was greeted very enthusiastically by the family. The first thing Woody said was “it’s all my fault. I shouldn’t have left you. I would have made sure you got on the right train.” It was lovely to know he cares for me that much but I really don’t want him blaming himself for something that I did. He maybe growing up but it was not his fault that I’d missed the train.
We were home about 3pm and making spooky faces out of pumpkins and dressing up for Halloween so the usual routine.
They seemed to enjoy the making of the pumpkins but AJ and Woody were quick to come back as it was a bit cold and windy and I think they’d realised that they’d got as many sweets as they’d be allowed.
I unpacked a bit and went to bed about 10pm
Saturday 1st November - I slept through the morning. Hubby woke me at noon and however much I struggled, I could not keep awake, and so, at 1pm he tried again. This time I did manage a bit of breakfast before falling asleep. At 3pm I dragged myself out of bed after being woken again and found I had a temperature of 39 deg Celsius and felt as though I had a chest infection.
Of course, when I phoned the hospital wanted me in straight away. Luckily, our 2 caravanning friends were there at home so they took the children and hubby took me to the hospital.
I came straight into the ward by which time my temperature was just over normal - as usual - but my ankles and left arm were swollen. I had a chest xray which showed a chest infection and they took blood in case I had a line infection.
I just felt weak and not quite right but not anything you could put your finger on. I had the antibiotics and carried on weakly round the ward making tea for others and me and re-warming my wheat bag.
Monday night - I just went to bed with a feeling of dread and foreboding. I had no idea why or even if it meant anything.
Tuesday 4th Nov - 415am - went to loo - I know you really needed to know that part and then made a cup of tea and went back to sleep.
610am - woke up with a fright and couldn’t stop coughing and just felt as if I was being suffocated. I could not take a breath in. I could breathe out but not in. It was the same feeling that I had when I nearly drowned whilst canoeing in the Ardeche River in 1986 when I got caught in a stopper wave and when I nearly drowned when I was 7 when I was being taught how to swim in the sea. I could feel the water in my lungs and see these black face mask like things in my vision. I just either wanted someone to stop it all and just completely suffocate me and finish me off or give me a massive dose of oromorph to calm down. I really wanted hubby there as I knew he was the only person that could get me to breathe more slowly. I could hear myself make my little moaning, repetitive sound that I make when in pain and was rocking to and fro. I was also freezing cold. It felt as if I was all alone, and infact was temporarily as the nurse had gone off to get the machines to take observations. I hated being alone and this was the worst time in the day to be taken this ill. It was the time for intravenous antibiotics and observations and getting people onto commodes and not the time for someone to stop breathing!!
If I was frightened before, it was nothing in comparison to the newly qualified nurse’s face when she took my oxygen saturation measurement. That was 60% - rather a long way off the accepted figure of 95% and above. At that stage, I wasn’t sure what scared me the most - 60% or the look of sheer panic on the nurse’s face. She should have known better than to look so frightened - don’t they teach them anything about communication skills and body language now when they train.
Someone gave me a salbutamol nebuliser and the doctor was called who thought that maybe I’d been given too much fluid as it is known that my heart function is not brilliant and my ankles and left arm were really swollen and red. She gave me some diuretics (water tablets) intravenously and with that combination plus 100% oxygen through one of those re-breathe bags and at least I felt I was only mildly suffocating and not drowning.
I did manage to go back to sleep until about 830am when the same thing happened again but more mildly this time. I suppose as I was already breathing the oxygen, it helped and prevented it getting into a full blown drowning/suffocating scenario again.
They gave me more diuretic and nebuliser and my breathing settled but my heart rate and blood pressure bothered them. Well, a blood pressure of 84/42 and a heart rate of 146 is not very life friendly is it? They decided to do an ECG just incase I was having a heart attack but all that it showed was my heart was going too fast!!! They subsequently stopped the salbutamol by the nebuliser method - the high powered oxygen one but said I could have it by the usual inhaler way.
I saw my consultant about an hour after this who thought that it was probably an infection that caused the collapse of my breathing but they couldn’t rule out a further cancer spread. He seemed quite excited that I had had such an unusual way of becoming ill and went off merrily. I feel after over 3 years of us regularly seeing each other, we have finally got to feel comfortable with each and he knows I will not only challenge him on a medical or treatment issue, verbally but my body also has this knack of doing it anyway in the way it behaves with my cancer. Why am I always so different? I’m sure I started out in an ordinary fashion!!
He ordered a chest xray which I had done in my bed much to the radiographers surprise as he had only seen me walking around and laughing the week before so was rather surprised to see me so oxygen dependent.
The chest xray showed my lungs were full of fluid but on the inside and not between the lining of the lungs (pleura) and the ribs where most ‘normal’ people get their fluid and it can be drained off then - painfully but can be done. Trust me to get the sort where my lungs fill up like a sea sponge and so it can’t be squeezed out. The water tablets are the only option and the salbutamol nebulisers were helping more than the inhaler but there again, I can’t go around with a heart rate of 140!!!
The rest of the day went as a blur but I know they kept rechecking my blood pressure as it was still down in the 80s/40s all day and they were scared of giving me too much fluid in case it made things worse again.
Wednesday - the same thing happened at about the same time but at least this time I was already using oxygen so it wasn’t such a crisis. However, my blood pressure remained around 80/40 until Friday when it went back to a more normal 100-120/60-75.
I have no clear memory of Tuesday/Wednesday but I know I was too weak to get out of bed on my own and move without oxygen and according to my hubby, I was a bit confused and spaced out.
The nursing care again was not great and I was not offered any help with washing etc until Thursday. The cleanliness was even worse and the domestic/housekeeping side was so understaffed and even if they did turn up, they hardly put any effort in to their work. Infact, if it hadn’t been for my family and friends I’m not sure if I’d have had any care at all. They made me drinks and hubby or someone fed me as I was too dependent on oxygen to try to feed myself and get my oxygen back on my face on my own. My mum, sister and a couple of friends would ‘put me to bed’ each night. I suppose I made things harder for myself by insisting that I got dressed each day but mentally, it is so important to me to get dressed if I can.
The ‘putting to bed’ routine was literally helping me get into my pjs, teeth brushing and getting into the bed instead of being on top of it and sorting out my lymphoedema sleeve etc so hardly difficult.
All week, the specialist registrar seemed to be drip feeding me bad news. Firstly, that it didn’t look like it was an infection causing my breathing to be so poor but the cancer growing and then it was my blood proteins were too low and so the cell walls were breaking down which was why I had the swollen legs and fluid in my lungs. Then by Thursday night, it was that I would not be strong enough to have chemo and that I was at the end of treatment.
On one hand, I felt I could not go on, as physically I did not have the strength to go on fighting but Christmas was only just over 6 weeks away and I’d been so sure I’d get to that and now I wasn’t sure if I’d get to the end of the day. It felt so unfair after all this fighting to get chemo to suddenly be overtaken by an infection and not the cancer.
However, there was the weekend to get by/through and I wasn’t going to stop fighting yet. I was close to giving up but not yet - I’d promised I’d say goodbye to my children and I hadn’t done that nor had I finished the cross stitch for my hubby or would you believe, the memory books for my children - it’s a work in progress!!

2008-10-27T20:11:00.003Z

Saturday ended up being different to expected as we ended up temporarily childless!!!
AJ was on the Isle of Wight and Laura had been invited the night before to a sleepover on saturday night. Then suddenly Woody was invited to a sleepover and in 10 minutes he was packed and off!!!
Woody took part in the Great South Junior Run in Portsmouth. He really enjoyed it but it was a bit further than he'd run before so found it harder and his time was quite long. He met up with his friend before they started to run but his friend could run faster so left him behind!!
Laura and I went shopping for 3 hours!! We did some shopping for Halloween as they love trick and treating and then we did some girly shopping. Laura is so tall now, we just buy adult clothing. She looked stunning in her new outfit with her long legs in leggings and skirt and top and so grown up. I bought her some boots which reminded me of my black suede boots with tassles down the back that I had in the 1980s.
That meant by 5pm, the house was devoid of children so we went off for a wonderful meal in a pub. We both over ate and I felt quite ill when I got home that I fell asleep on the settee for about an hour from 830pm. I thought I would just go to sleep but once in bed I seemed to go into my trancelike state. I seemed to be awake for a few minutes and then asleep and was jsut so full and uncomfortable. I used my hot wheat bag and my heated pillow to help with the pains but I just didn't settle to sleep until about 5am. The problem was I was trying to do a tescos order and I'd booked a slot but as kept falling asleep and waking up again , it took me more than 2 hours to complete my order and so it wouldn't let me check out to complete the order. Eventually, I got through the system and hopefully will have some food delivered on friday.
Sunday morning, we got a text from AJ's friend mum to say they were coming home today rather than monday as AJ wanted to go home and her son wasn't that happy with the caravan site either. In some ways, it was good as it gave me more time to pack etc and we could leave earlier on monday but not so good as gave hubby less time to clear boys bedroom so that Woody has somewhere to do his homework in peace and quiet.
By noon all 3 children were home and so it was back to a hectic life again.
For some reason this cycle, I've had a very red face from friday to sunday andthe redness extended all over my body. I don't know if it was the combination of the blood and the chemo or just one of those things. It has been pretty annoying anyway.
We went out to Pizza Hut to celebrate the beginning of half term. It turned out to be a disaster. Why do we always attract such bad service and food at chains? The wait to order wasn't bad but then hubby and I got our starters and then our main pizza arrived apart from hubby's. They told us kitchen had got it muddled and a medium pizza was on its way rather than an individual. 20 minutes later, when the children had finished their pizzas and hubby was still waiting. We should have complained about the starters - the nachos was burnt and cold and the garlic bread was cold as well but we thought we'd give it a chance and din't bother. Eventually, his pizza had arrived by which time AJ was bored. We then had a long wait to order puddings and an even longer wait for the bowls to arrive for the icecream factory. At this point, we did complain and so got all our starters and our drinks free but has put me off going back there again. It feels like you definately get what you pay for as the meal and service at the pub was superb.
I then spent sunday night packing and slept well for once.
Monday - we were aiming for the 11am train and after a very slow taxi drive to the station we just about got there on time only to find that the train was only 5 coaches long and people were standing!!! We took one look at the train as it came in and abandoned all ideas of getting on it so left the platform and bought cakes and drinks and waited for the 1130am train.
This was a much better decision as the 1130am train was 10 coaches long and about a quarter full and only stopped at one extra station so it was far more pleasant. We then swapped onto another train in London and am now at Heather's house in South London having a lovely time and being looked after superbly.
We spent this afternoon with me reminiscing about my childhood. We passed the old Town Hall in Catford where when I was about 4 I got into the lift and my Nan and mum didn't make it before the doors shut and I was left on my own!!! Ever since I've been scared of lifts and the only reason we had gone there was to join the Tufty Club so that I could learn to cross the road properly!!!
We then went onto the Hornimans Museum in Forset Hall. It was still free to go in and although a lot of it has changed beyond recognition, the German Clock with the Apostles that come out and bow to Jesus apart from Judas who turns away. We'd been told that it was now very tempermental and that it didn't always work. We were in luck. It chimed at 4pm and at 406pm, the apostles came out and bowed. it was wonderful. I can remember when I was little dashing off the bus and running up the stairs to see the clock chime. I'm sure when I was little, it chimed every hour or maybe it was always 2pm. It bought back lovely memories. The rest of the museum looked like it hadn't changed since the 60s with quite a few stuffed animals but also some wonderful fossils and it looked as if the art and craft session had been good fun. They have now opened a new aquarium at the bottom. That was quite an eyeopener. The way the jellyfish were displayed and swimming around was stunning and there was a huge seahorse and lots of lovely coral and tropical fish and a huge blue lobster. It seemd to be a place that mums took small children too to explore as there were a lot of interactive things to do at certain times and the museum is in the middle of some wonderful gardens. We only had just over an hour there so hope to go back this week to see the rest of it. AJ loved the Mummy display plus there was a large African and Indian display which we either just rushed through or didn't see. On the way back through the park to where we'd parked the car, Laura was amazed by the squirrels raiding the bins and eating apple cores. I don't think she'd seen squirrels that tame before.
We came home in the rush hour and I think the traffic flowed better in Greater London than it does where we live!!!
Just had a wonderful fajita meal which was wonderful and now supping red wine after finishing a McFlurry.
I feel so well at present and apparently look so well that it is hard to believe that I'm reaching the end of my life. My wig is looking good and looks like real hair and my skin is OK and I've got my eyelashes and eyebrows so it is only when I'm struggling up hills that you notice I'm short of breath and that sometimes I limp that it might occur to you I'm slightly ill. The insides of me would tell a different story if you could peer inside and my back is really painful today as I've been carrying a few things. (I hardly carried anything as hubby and the children carried all the heavy stuff). Life seems so unfair.

2008-10-24T18:32:00.004Z

chemo and blood transfusions
Well after wondering what cock ups they could make yesterday with having blood transfusions on the ward and trying to see the onc for my chemo, I'm amazed to report it all went more or less to plan!!
I had to get up at the unearthly hour of 630am to be ready for my lift at 730am so arrived at the hospital at 8am and had some extra breakfast. I'd bought food with me for the rest of the day, completely forgetting that as I was on the ward they would come round with tea/coffee and sandwiches!! I got to the ward just before 830am and the transfusion started at 930am and so I'd had my 2 units of blood by 145pm. It was lovely having a bed so I could keep my feet up and rest my back. I think my body got a bit overloaded by the volume though as my ankles did swell - wonder if they still give diuretics if having blood for anaemia and not because you've lost a lot of blood? The other advantage was I could sleep when I wanted to so slept on and off.
The oncologist came to see me about 1230pm and must have been the shortest consultation ever consisting of about 4 sentences asking me if I was OK and me asking if I was due zometa and that I wanted to miss next week off as it was half term and what were my bloods were like. He said he hadn't looked at my bloods but would look at the results and order the chemo and zometa and it was fine to miss out next week and that was that!!! I was a bit surprised he hadn't looked at my bloods as he must remember by now I always ask!!
The only slight hiccup was that I'd gone to sleep due to the IV piriton and no-one had checked the speed the taxol was running at so again it was very slow going through. They can't put the taxol through the machine as it has to go through a filter first and the machine can't cope with that!!! It finished about 40 mins late and I ran the last bit through a bit quick so felt sick when I went home but an odantroson saw to that. So it will be good to have a week off as will be in London monday to friday for half term.
Aj is so excited about Halloween that we have to be back for the annual trick and treat round that the children in our road do. He had set his heart on a grim reaper outfit but it is only in adult sizes so we bought him a similar outfit plus some stocking presents.
AJ has gone off with his good friend to the Isle of Wight today and is back on monday. He has been so excited about going so am pleased he has the opportunity to go and hope allworks out well. He is going on a Sun holiday so had to pack sheets etc so it looks as if he is away for a week and not 3 nights. He is going back to the site we stayed with my sister in April. I think it will be warmer than when we were there as it was minus 4 one night!!! It seems strangely quiet without him. Then Laura is doing a sleep over saturday afternoon to sunday late morning. Hubby is taking Woody to do the junior version of the Great South Run tomorrow lunchtime. He is being sponsored for the Hospice so if anybody fancies sponsoring him then he would be grateful - sorry - I feel I'm always asking for money. The run is actually for leukaemia but you had the option of choosing your own charity and that is what he chose. He went out for a training run yesterday and did really well. Hubby cycled beside him. Heis very interested in doing athletics and I keep forgetting to find out about it and when you try to google it nothing comes up. In a city this size it seems unbelievable not to have a club or do they just not advertise themselves?
AJ comes back about 1pm on monday and then am aiming for 3pm train to London. We're booked on the London Eye on Tuesday as we had to book a day and time as I've got a disabled ticket. We are also meeting my sister and her family on thursday so think I will spend the day in Heather's house on wednesday as will get too tired I think to do 3 days in London on the trot and it will be good to spend some time with Heather and hopefully will have a voice this time unlike last time when I had laryngitis which turned into a chest infection. It was so frustrating only being able to talk in a whisper!!
Time sped by today at frightening speed. We did a little shopping this morning and then I went out for lunch and it was wonderful to be able to choose anything off the menu and then went in to see Woody's teacher, home then dinner and it's now 8pm. Life is just rushing by.

2008-10-22T21:47:00.005Z

Well, not only did I not go to bed late on thursday, I woke up at 530am so had 3 hours sleep. These steroids are a nightmare!!

Seemed to take me ages to pack so instead of leaving at 10am as planned, we didn't leave till 1130am and then got caught up in roadworks so only just about made it on time for lunch at the MacMillan Trust Albany Lodge Guest House. This MacMillan Trust is a totally different charity to the MacMillan Cancer Support Charity that everybody is familiar with. It has been running for 23 years and is the only Guest House it runs. The charity does pay for some people who otherwise may not get a holiday or else it is £55 per person per night for full board and if there during the week, it also offers 3 morning excursions. It seemed quite good value to me. It is an old fashioned type of guest house and the food is very typical old fashioned type of English food but it is cooked really well and was ideal for us. The majority of guests were on the retired side but there was one family of 4 generations and they were good at storing frozen baby food and reheating it. There were quite a few single women there in their 50s who also had breast cancer plus some older single women and just 2 single men. It seemed sad to me that there were so many single people there and I wasn't sure whether it was the cost or if they really had no-one to go away with. That seemed very sad if that is the case and makes me so grateful for all the friends and family I've got to support me.

At risk of sounding like a marketing campaign but knowing that so many different people with cancer do read this blog and might feel they want a break near Bournemouth, I feel I should tell you a bit more about the place. For the rest of you, just skip the next paragraph.

There is a nurse on duty 24 hours a day and although there is tea/coffee etc in your bedroom, they are happy to make you a drink at anytime and offer alcohol at most times. There are 3 different rooms to sit in downstairs with only 1 having a telly in but there are tvs in the room but they desparately need replacing and that is their plan. The beds were really comfortable and there are lifts up to the bedrooms and down to the restaurant. They will cater for special diets and can loan out mobility scooters, wheelchairs and other mobility aids. They do half day trips to local places 3 times a week. The food was good and plentiful and the waiting staff really helpful. It was the usual cereal and cooked breakfast and toast first thing. Then a 3 course meal at lunch and dinner. I had trout one day and a roast dinner another. The sweets were things like strawberry gateaus, creme caramels, ice cream or cheese and biscuits so basic English food but cooked to a high standard. If you wanted to miss out lunch, they offered a packed lunch which was huge. They also own a beach hut which you can use. All in all, it was a lovely relaxing place and so many of the guests had been there frequently.

It seemed a shame we didn't know about this earlier as hubby and I could have gone away for a few days there earlier in my illness. Some of the people staying there had come from as far away as Bedfordshire and Surrey whilst there were others like us who lived much closer. If you do have cancer and just want a break, it is a good place to go.

Anyway, back to what we did!!!

After lunch, we went into Boscombe and had hoped to take the landtrain into Bournemouth but it was only operating at weekends so we drove into Bournemouth and had a walk around the gardens and did some shopping. There was a different type of craft fair there so managed to buy some different things for Christmas presents.

Saturday was a lovely warm day so we went to Compton Acres Garden. It was really beautiful as the trees were turning autumnal and there were stunning views over to Brownsea Island and Hengistbury Head. The gardens themsleves were in different styles such as a Japanese garden and an Italian Garden plus there were little sculptures in places that gave it an individuality. We managed to get across the stepping stones without falling in and there were plenty of seats for me and a coffee shop halfway round. There was also a lovely and unusual gift shop so again bought a few bits and pieces. We then went on to Wimbourne for more shopping. Think you can gather we did rather a lot of shopping!!!

Sunday - my ankles were less swollen than the night before but were still up and the weather was not good. Very windy and occasional showers. We walked as far as the papershop and then spent the rest of the day sitting in the lounge so I could do some cross stitch and other memory stuff and mum was busy knitting hats for babies in Africa for a project that Paul O'Grady is involved in.

Monday - left the guest house and as the weather was even worse than sunday we had to abandon plans to go to Exbury Gardens and so just carried on the M27 till we got to Portsmouth and did more shopping at Gunwharf Quays before coming home.

It was lovely just to spend time with mum on her own without being interupted by the family or the phone. It was not as if we had lots of 'deep and meaningful conversations' but just lovely to sit and chat or go out to places which are 'normal' - like shopping centres, craft fairs or visiting gardens rather than sit in chemo clinic and not be able to talk without being overheard and the stress of worrying what the consultant will say or howlong pharmacy will take to make the drugs up. Now that I'm eating normally, it was lovely to have the food all provided and not to have to think about what to cook, clear away and wash up etc. We did really well on the map reading front and didn't get lost which was an added bonus and of course, we did loads of shopping!!

Again, it seemed a shame not to have done this earlier. We could have gone away somewhere else but it was definately better for me in my state of health to stay in a specifically designed guest house for people with cancer as it made staying in during the day so much easier as the lounges were big with chairs the right height and with different types of backs. Footstools were available which makes all the difference to how comfortable I am and helps with my swollen ankles. It was good to be away and have that break away from my family as well - as much as I love them - sometimes I just want to be alone or with quiet adults. It was worth doing and I'm glad I was well enough to do it.

I didn't forget about my family and did worry about how they getting on and I did miss them. I had phoned home every night and it all seemed calm apart from Laura had lost her mobile phone 'somewhere in the house' on saturday and it couldn't be found and I wasn't sure having bought a top up voucher for the first time in my life, how long it stayed valid for and I didn't want to waste my money and I also wasn't sure what names and telephone numbers were stored on it. The twins had to pack sunday night as they were going away on a school trip from monday morning to wednesday lunchtime and I had a chat with them about what they were taking and just had to hope they had got all on their list. I didn't need to have worried as they are used to packing for scout camps and can follow the list provided by the school but I just couldn't help it.

Tuesday - mum came round to tidy up after the breakfast and getting off to school rush and just help me before I went to the Hospice. She did lots of housework as she didn't leave for home till nearly 2pm and she had arrived at my house at 9am!!! It was busy at the Hospice this week. I miss not having my hair done - fiddling with a wig isn't the same!!! I did have aromotherapy and she was happy to gently do this on my back. So many people are not willing due to my secondaries in my spine and shoulder blades but I just told her which bits to avoid and it felt divine. I also had reiki but due to a shortage or mismanagement of room allocations, I ended up sitting on a chair without arms or proper back support. It was impossible to fully engage and relax completely when sitting upright so didn't get my usual feeling of being somewhere else and the full benefit of a reili session. The reiki practitioner also felt she wasn't able to offer a complete session either so that is something that needs looking into. You can not get the full benefit of reiki or aromotherapy sitting in a room full of chattering people. You need to have a quiet place where you won't be interupted. The rooms just need to be allocated properly which was very frustrating this week. I also saw the physio as my lymphoedema sleeve has lost its elasticity and need a new one. The afternoon was spent making cards to sell for the hospice.

I do enjoy going there. It is my 'treat' day as I like to have reiki and aromotherapy. The manicurist is off sick which is a shame as that is always something I enjoy and now being partially bald, I don't go to the hairdresser either. I need a wig that grows so that she can restyle it from time to time!!! I missed the chiropodist last week and do need to see her as one of my big toes is trying to ingrow again after the surgery in January. I also enjoy talking to the other 'patients' who attend. They are all so interesting and have a good sense of humour. The age difference doesn't matter now but it was difficult for the first few weeks that i went. I think the next youngest must be now in their 60s so there is at least 14 years between me and them. I suppose it helps having been a nurse as I'm used to talking to people of different ages but I think most people say the same, you get used to being a group and we often don't talk about our cancer at all. One lady bought in her Land Army Medal which had been sent to her earlier this year. That was interesting but as someone else pointed out,it is sad that these women were only recognised this year for all their hard work in the Second World War so there is Gordon Brown's signature at the bottom instead of Winston Churchill's.

In the evening, we had AJ's parent's evening and had a shock that he was on a an IEP (individual Educational Plan) and had been for the last year and no-one had told us. We had definately not signed anything about this. We are really worried about AJ. His concentration is so poor and he is so fidgetly. Everyone keeps saying it is his reaction to my illness or the death of his cousin but he was like this before any of that happened and we can not get any help for him as he has not been assessed. We did manage to talk to the deputy special educational needs co-ordinator so she is going to try to get him seen by the educational psychologist and we also found out that the counsellor that he saw last year will be doing some limited work at his school so he will see her again and also get some help with his lack of confidence. Like Woody, his handwriting is a problem. Both of them have it all in their heads but just can't get it down on paper. AJ is in the middle groups for numeracy and literacy but if he would only pay attention and settle to do his work he is working above that level. His reading is excellent and his vocabulary is huge and he has a brilliant imagination so has great story ideas but just can't follow it through but is getting limited help. He is good at home at numeracy but just doesn't stay on task at school so is in a group below his ability. This really worries me and makes me feel guilty that it could be my illness that is causing him to be so unsettled but there again,we both feel he was like this before i was ill and we feel that sometimes the school just uses my illness as an excuse for his behaviour and as he is working at average, they are not so concerned. I really am worried about the children's future education especially the boys more than Laura. I feel my illness and my eventual death will stop them reaching their full potential and even though I know I shouldn't feel guilty, it leaves me feeling guilty and very sad that I will not be there to support them through the education system as well as the rest of their lives. I feel at times I'm more of a problem to everybody by being still alive than if I was dead. I know that is not true but sometimes I feel such a liability and my illness and current health stops us acting as a normal family - whatever that is!! Next week, we're staying in London and it's knowing that I can't go out all day with them and will have to come home early or sit in cafes will they are off doing something else which makes me feel bad. They all worry about me and if I do leave early then they'll worry about how I will get home and it spoils us being a complete family. When I am with them they have to walk more slowly and they will worry that I might fall so sometimes I think it will be easier for me to stay in.
Gone right off at a tangent now but I think today just made me feel uncertain of my role in life and scared for the future.
Today - wednesday - the district nurse came to take blood to make sure I'm alright for chemo tomorrow and to crossmatch for the 2 units of blood I'm supposed to be having. I'm worried that something will be wrong in my blood or that the sample will have gone missing. The oncologist wants the transfusion to start at 830am - that will not happen I can guarantee that - it will be later and I've got my oncology appointment at 10am and scared I'll get missed again. Then the cleaner came in and got things done. I booked the train tickets for going to London and for the London Eye. Being disabled means we have to have booked timed tickets so now worrying that we won't get there on time or the weather on tuesday will be so bad we won't get a view!!!
Had to pick up the twins from their school trip at 1pm and at that time had terrible stomach cramps and was really breathless and it felt too much to get them.
Hubby and I had a row about tidying up and I just don't remember what we agreed about Woody's desk and laptop so argued about that. We have kissed and made up now though.
I went out with a friend for a coffee and for her to buy a few bits she needed and ended up in tears as I feel so useless and causing a problem for people and also being so scared of the future for my family and how they will cope.
Then this evening everyone was tired and grumpy and everybody seemd to be moaning and I just wanted to run away. However, after tea it all calmed down and I spent time with each child and hubby and felt much calmer again. It also helped that the neighbour came round and got us back onto wifi and the printer working after it suddenly stopped working on monday evening. For some reason, I am beginning to panic if we can't access the internet and I have urgent paperwork I need to print and to wait from monday evening to wednesday evening just seemed too long so now it's all restored, my peacefulness has returned as well.
Oh well it is now 1am so will only get about 5 hrs sleep but was too twitchy to settle earlier and hopefully, I will have a bed so can sleep during the day tomorrow and by the time I get the steroids I will be buzzing again!!!
Another cycle of ups and downs of steroids and chemo - but should then have 2 weeks between chemo so should then recover.