Two nights ago I had a vivid dream about my mother. The next day she was taken into hospital, possibly with jaundice but they are doing a CT scan today. She is stone deaf so I'm not sure how they are going to do it. Anna stayed with her at the hospital and was very good as usual. She has had to go so many times in the last year or so since I have been ill. What horrified them both is that my mother aged 96 was put in a MIXED Ward!
I have suggested to Jonathan and Anna that as soon as they have sufficient money they join BUPA. Obviously it is very worrying not being there but she is in good spirits thank goodness.
I haven't been very well for the past few days. I have had nausea and I am sleepy most of the time. It doesn't matter what you read about transplants or what you are told, nothing prepares you for it. Being isolated here while my little mother is in hospital is very difficult as I feel I should be there, not only that I want to be there for her.
I had hoped to be coming out of hospital tomorrow but it was not to be. My oxygen levels need to improve and I had a temperature spike and some sickness which has got to be handled before I can think of going home. As Ray has a course on Friday, Saturday and Sunday, the earliest I can now think of is Monday.
On some days it is difficult to use the computer at all because I am tied to the bed with a drip. Tonight I have woken up as the nurse gave me an injection. I didn't want to go back to sleep too early anyway. I have tremendously vivid and pretty awful dreams. They are not hospital based and usually take place in other countries, but they are complete narratives which I can remember and, if I wake, will be able to go back to if I am not careful as the script is running through ny head.
The air is very drying here and I must stop writing now. I could never have imagined what it would be like in the bubble and when I am better I will write about it in more detail.
I had a difficult time during and just after the transplant and for several days my white blood cell count was 0.0. This is normal after the procedure and it normally takes 7 to 14 days to start to climb. The magic figure which proves engraftment has taken place is 1.0.
For 5 days now my cell count has been above 1.0 so I am allowed out of the room to take a stroll down the corridor - not very exciting you might think, unless you have been confined to one romm for 3 weeks. This all means that my new bone marow is making its way into the larger bones and is taking over my old bone marrow in order to fight infection.
For many days I had all the maladies which are associated with chemo and transplants but I am largely through these. I may still get graft -v- host disease where the body rejects the transplant but this is expected and I am now on tablets to fight possible rejection.
Being on tablets is such a bonus. For many days I was linked up to the drip from morning to night so I couldn't use the computer and spent all that time in or on the bed. In addition I have been on oxygen which again ties you to a specific part of the room. Now I am beginning to have a little time without oxygen. Actually, if this problem is solved I may be able to go home at the beginning of next week.
The last few days have been a little difficult in terms of being able to keep up with my blog. I have been linked up to the drip from early morning until late at night - yesterday this was 7.00 a.m. to 11.15 p.m. However, it was not all bad. The frustration was partly being too far away to get to the computer.
After the stem cells were transfused the main concentration of effort is in ensuring the blood counts are kept to the correct level. I have had several transfusions of blood and platelets as a result, together with potassium. The real concern, however, is the level of white blood cells. After the high dose chemotherapy the white blood cells reach 0.0 and remain there for several days. In my case this was reached just after the new stem cells were infused and every day they have been at 0.0 - except today when they rose to 0.2! Of course, since the rise is miniscule they could fall tomorrow but the fact is they are MOVING.
This is a period where I have to avoid infection because of very low blood counts but movement in the right direction has to be really positive. So why did they go up over night? Could it bebecause I had a card from my donor twin? Naturally we have to maintain anonymity but if she is reading this there is so very, very , very much I have to thank her for.
I am attached to a drip most of the day and night but today I have a short break. All the time I am attached, the drugs combine to make me feel very sleepy and I keep catching short bursts of sleep, then waking up. The time goes so slowly.
Obviously when attached, I can't use the computer or even change DVDs, even if I had the concentration so perhaps sleep is the only option. I am trying to curb the nausea and headaches today. It is difficult to choose what to eat and even more difficult to know what to drink. Fluids in and out are measured so if you don't drink enough you are hooked up to special hydration during the night! There is no escape.
Having had platelets yesterday, my blood counts have very slightly risen. They will remain horrifically low (as everyone else's does) for another 10 days after which they should start to pick up. I shall be prone to even the slightest infections - even from myself but this is normal.
Ray went to see my mother yesterday which I was pleased about. I am sending her little cards most days to keep her updated as otherwise I know she worries. Anna and Dave came in with lots of gifts and it was lovely to see them. Jonathan came in later too. He didn't seem to worry about my dropping off and he keeps me supplied with all I need.
Yesterday should have been exciting with the transfusion of stem cells. Mentally it was exciting but unfortunately, the anti-rejection drug I have twice daily doesn't agree with me at all. I was on the drip for 24 hours, nausea, headaches - you name it I had it.
I am a little better today. They are putting in the anti-rejection drug much more slowly to prevent the severe symptomns but it does mean being tied up to a drip night and day. I just have this tiny break now to get to the computer. I have had an infusion of platelets as yesterday my eyes became very bloodshot.
Now the blood counts will become very important, with different infusions of blood and platelets coming in to hold up the system. Trying to keep this precarious balance is amazing. When I'm on a drip I don't have the concentration to read or watch television, so I tend to doze - night and day. Days are very, very long!
Today I shall be progressing towards my new DNA and new blood group. The balance between our physical and mental wellbeing is very acute. It is so easy to become overwhelmed. Ray spent 4 days with me this week, staying with Jonathan at night. He has gone back today to run the business and catch up with home life. He is coming back tomorrow. Jonathan and Josie are so glad he doesn't have to do a long train journey twice a day. The family are all keeping in touch with messages and phone calls. I just feel guilty that sometimes I am too ill to talk properly.
Today has been a very long day in the Bubble. I started chemo just after 8.00 a.m. and with just a couple of 10 minute breaks thought I'd finished at 7.30 p.m. only to find the anti-rejection drug had to be transfused until 10.00 p.m.
Raymond came to see me at lunchtime and stayed until 7.30 p.m. Fortunately he is staying with Jonathan tonight so not too long a journey back. He was horrified to learn I had another dose of medicine to transfuse. He is so good about sitting with me, reading and talking. However, I had two good phone calls this evening, firstly from Margaret Hoadley from home and next a long one from my cousin, Rosemary, to whom I feel very close.
Jonathan and Josie have been attending a performance of the Verdi "Requiem" tonight at the Royal Festival Hall. I shall never forget performing this oratorio at the Wembley Arena years ago with the World Festival Choir when Luciano Pavarotti was one of the soloists. It was just such a wonderful experience.
Tomorrow evening the donor stem cells will arrive at the hospital. It has been decided that as this will be at about 6.30 in the evening, the transfusion of the cells will not be done for me until the following day. This will leave the laboratory/pharmacy the opportunity to check everything in the morning. So I am not sure what form tomorrow will take. It is supposed to be a rest day but I'll believe that when I see it!