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

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

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

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

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


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

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

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

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

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


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

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

Plumbing and the man who lived here previously


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


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

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

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

Emotional Rollercoaster and Surprise Holiday Booked

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

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

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

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

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

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

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

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

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

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

Christmas Day to Sunday 28th


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