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.

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.

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.

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.

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.

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.

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

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!!!

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!!!

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!!