Yesterday consisted largely of various bags of chemo - hours and hours of it! Unfortunately this led to a rather disturbed night constantly going to the loo but there were no bad reactions to the chemo, despite lots of warnings about shivering fits, sickness etc . so I am very grateful for that.
Today looks like more of the same before the chemo drugs change tomorrow preparatory to the transplant itself. I have been hoping to go downstairs when Jonathan and Josie come as after today I shall be too neutropoenic to cope with any possible infection but I've just hurt my back and I'm waiting to see if it will improve - so silly just bending down to pick up a slipper.
It hardly sounds like a day out to go downstairs to the cafeteria, but when the world is your room that's what it amounts to. Unfortunately, it is too wet to go outside and that is affecting Raymond's preparations for the photography course today. Normally, they visit a local medieval abbey, parts of which are covered but the weather forecast is for horrific winds in the Channel. So he may have to wait and do that element this afternoon.
I'm really looking forward to seeing Jonathan and Josie. It has been a great comfort knowing that they are not too far away and perhaps my back may get better before they come.
Saturday, 27 February 2010
Friday, 26 February 2010
I wasn't going to write today
I wasn't going to write today. The chemo started at 12.30 and didn't finish until almost 9.30 but the side effects were fewer. Unfortunately the nurse in charge of it today was not really keeping an eye open for each drug finishing so she wasted just under two hours between 12.30 and 2.20 when it started off again.
The reason that made me a little jittery was because I really wanted it over before Jonathan came. In addition I hadn't slept properly the night before, partly it was me trying to see if hospital coffee at lunchtime was better than hospital tea, and partly because a man was in obvious distress next door. I had to get up and check to see if a nurse was with him. So I was planning to sleep a little better tonight.
Anyway Jonathan came in carrying three enormous bags full of equipment as tomorrow he is interviewing and filming some possible candidates for his programme. It was so relaxing seeing him and just chatting about this and that.
The important doctors did their rounds today. Dr Mike Potter is actually quite funny and says I should try to enjoy this weekend, perhaps going down the pub! I think he means from now on in I probably won't. The female doctors all love the quilt Josie made for me which is on my bed. They comment on my digital photoframe and all the touches which make this a little less clinical.
They are all very friendly and it makes the world of difference. Tomorrow more chemo but I hope that it won't take such a long time as today. Ray's course is going well and he seemed pleased that I didn't have the adverse reactions I suffered from yesterday's drugs which were actually quite different from today's chemo - so much variety and so much fun!
The reason that made me a little jittery was because I really wanted it over before Jonathan came. In addition I hadn't slept properly the night before, partly it was me trying to see if hospital coffee at lunchtime was better than hospital tea, and partly because a man was in obvious distress next door. I had to get up and check to see if a nurse was with him. So I was planning to sleep a little better tonight.
Anyway Jonathan came in carrying three enormous bags full of equipment as tomorrow he is interviewing and filming some possible candidates for his programme. It was so relaxing seeing him and just chatting about this and that.
The important doctors did their rounds today. Dr Mike Potter is actually quite funny and says I should try to enjoy this weekend, perhaps going down the pub! I think he means from now on in I probably won't. The female doctors all love the quilt Josie made for me which is on my bed. They comment on my digital photoframe and all the touches which make this a little less clinical.
They are all very friendly and it makes the world of difference. Tomorrow more chemo but I hope that it won't take such a long time as today. Ray's course is going well and he seemed pleased that I didn't have the adverse reactions I suffered from yesterday's drugs which were actually quite different from today's chemo - so much variety and so much fun!
Thursday, 25 February 2010
Stronger and longer chemo
From today the chemotherapy will be stronger as new drugs are introduced and the whole process will take up more hours in the day. In about ten days' time I shall start to lose my hair.
In the meantime, apart from constant medical observations, time is really only broken up by meals. I was fortunate yesterday in that Raymond came to see me. He had company on the journey from home to London as someone from the village was also travelling at the same time. On his return he met Anna at Southampton Central as she had been teaching an evening class. I was glad to hear that as the station is soulless at night and there is always a long wait for the train to our village since there is only one per hour. She then cooked him a meal so I was specially glad about that.
I'm not sure how well he is coping with meals at the moment but as he is running a course over the next three days, he will be going out to lunch which will help. I have been planning with Anna the shopping I can order online so that she can make some meals for him.
Jonathan should be coming this evening so I am hoping I shall not be in too bad a way by the time he arrives. The problem is that I get so tired early in the evening and he can't get to me until about 8.30 but he is such a joy.
In the meantime, apart from constant medical observations, time is really only broken up by meals. I was fortunate yesterday in that Raymond came to see me. He had company on the journey from home to London as someone from the village was also travelling at the same time. On his return he met Anna at Southampton Central as she had been teaching an evening class. I was glad to hear that as the station is soulless at night and there is always a long wait for the train to our village since there is only one per hour. She then cooked him a meal so I was specially glad about that.
I'm not sure how well he is coping with meals at the moment but as he is running a course over the next three days, he will be going out to lunch which will help. I have been planning with Anna the shopping I can order online so that she can make some meals for him.
Jonathan should be coming this evening so I am hoping I shall not be in too bad a way by the time he arrives. The problem is that I get so tired early in the evening and he can't get to me until about 8.30 but he is such a joy.
Wednesday, 24 February 2010
Coping
We are now into day -7. This is calculated as a countdown of days before the transplant. It makes it sound exciting but the days are really not like that at all. In fact, when I wrote to my mother today I said that I thought my days were about as exciting as hers.
Fortunately, I am less anaemic so that I haven't had to have any more blood transfusions today. In addition, although I reacted quite badly to the chemo on Monday, yesterday went far more smoothly. However, I am incredibly tired. A physiotherapist came to talk to me yesterday about exercise. I think my exercise for the day was reading through the exercises.
Jonathan came to see me yesterday and it was so lovely to see him. He fixed up the dvd player for me and showed me how to download some programmes. We went for a little walk around the wards. Today Ray has been able to come. He brought up all the extras that I need and although it took some time via 3 trains and a bus he seemed quite pleased about how the journey was managed.
I am finding it very difficult to concentrate at the moment whether it is TV or reading. I normally go through all the crosswords, codewords and su doku in the paper reasonably quickly but it is all rather slow at the moment. However, the programme is moving ahead. At times I want to escape as this is really serious stuff but I know I can't; there is no backing out now and so many people have wished me well. I just have to summon up the courage to cope as best I can.
Fortunately, I am less anaemic so that I haven't had to have any more blood transfusions today. In addition, although I reacted quite badly to the chemo on Monday, yesterday went far more smoothly. However, I am incredibly tired. A physiotherapist came to talk to me yesterday about exercise. I think my exercise for the day was reading through the exercises.
Jonathan came to see me yesterday and it was so lovely to see him. He fixed up the dvd player for me and showed me how to download some programmes. We went for a little walk around the wards. Today Ray has been able to come. He brought up all the extras that I need and although it took some time via 3 trains and a bus he seemed quite pleased about how the journey was managed.
I am finding it very difficult to concentrate at the moment whether it is TV or reading. I normally go through all the crosswords, codewords and su doku in the paper reasonably quickly but it is all rather slow at the moment. However, the programme is moving ahead. At times I want to escape as this is really serious stuff but I know I can't; there is no backing out now and so many people have wished me well. I just have to summon up the courage to cope as best I can.
Tuesday, 23 February 2010
Being in the bubble
Once again our journey to the Marsden saw sleet and flakes of snow. We were all nervous but trying not to show it. Once here, I had a choice of rooms and was pleased to see t.v. dvd and internet access. Yesterday was very tiring though. I had chemotherapy in the evening and one of the drugs made me feel very weird. I couldn't tell whether I was hot or cold. I became very agitated and couldn't concentrate on anything. All I wanted to do was whip out the line and walk around.
Ray and Anna left once Jonathan and Josie came. I felt awful as I knew they had travelled by public transport but they were so sweet and realised I wasn't well. Apparently my blood count has been low - hence the tiredness so I have had two blood transfusions each lasting three hours.
Jonathan has been filming children doing the junior version of the race for life i.e. a promotional video for the charity as the actual race takes place in July. He made me laugh as he hasn't done any filming or interviewing children before and he apparently asked some difficult questions which Josie had to translate.
I've had some really lovely messages from people wishing me well. I know I am in the best place as they are all very friendly and competent but I also know this regime is the most difficult I have ever encountered.
Ray and Anna left once Jonathan and Josie came. I felt awful as I knew they had travelled by public transport but they were so sweet and realised I wasn't well. Apparently my blood count has been low - hence the tiredness so I have had two blood transfusions each lasting three hours.
Jonathan has been filming children doing the junior version of the race for life i.e. a promotional video for the charity as the actual race takes place in July. He made me laugh as he hasn't done any filming or interviewing children before and he apparently asked some difficult questions which Josie had to translate.
I've had some really lovely messages from people wishing me well. I know I am in the best place as they are all very friendly and competent but I also know this regime is the most difficult I have ever encountered.
Monday, 22 February 2010
Sunday, 21 February 2010
I want this to go ahead now
Yesterday and today have been rather overwhelming. There were mountains of clothes, wraps etc in two rooms some of which I shall take tomorrow and much I will leave here. Everything has to be scrupulously clean but, of course, until I get there I shall not know whether I shall need nightwear or modified daywear. I felt it better to have somewhere where Ray could look through when I ring up and ask for a particular item. As I shall lose my hair it was necessary to unearth all the caps and scarves I used before when I had chemotherapy.
Of course, at 10.30 a.m. tomorrow I could be told that there is no room available and so the agony will be prolonged. At least I have been to see my mother today to let her know that I should be going into the Marsden very soon. I was glad Anna was with me as that helped to keep the atmosphere a little lighter.
In addition, Ray is running a course this coming weekend so there were some preparations to make to ensure everything runs smoothly. I am sure that it will help take his mind off things. He needs the distractions at the moment so the fact that there is work to do on the boat is not such a bad thing as he can set his mind to that as well. I am hoping that if he goes to France for that purpose, he will go while I am in hospital because I shall be as safe there as it is possible to be in the circumstances.
My mind is like a butterfly at the moment. I keep of thinking of things I should have done and phone calls I could have made but in the end there is a limit and I have reached it. I am tired; I want this to go ahead now whatever the dangers and I hope there will be no more delays. I am so grateful for all the support I have received and all we can do now – and the best thing to do – is pray.
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