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.