Recently we went up to Leicester to be told there was another possible donor with a very good match. They are being tested and we are going up again to Leicester next week to find out more and probably I’ll have another gallon of blood removed etc!
I have had my lung function test which is fine. Also they tested my adrenal gland function after I came off steroids (synacthen test) and that’s OK too, though you could have fooled me as I still feel very tired. We tried a last bone marrow biopsy last week but it was almost impossible again and we only got a couple of tiny bits of core and no fluid. I was very bruised and sore afterwards with all the pushing but it subsided quickly. Instead I’m going to have an MRI – not sure how that can help – will have to ask. I do know my kappa levels are rising inexorably which is disappointing after all the PAD stuff but they don’t seem too worried about going into the transplant with higher levels unless they get too high. If that happens I might get a round of a new drug, Pomalyst.
I am going to have a small feeding tube (PEG) put into my stomach which runs down into my guts, so if I am sick or can’t eat they can pump food in directly. Lot of attention paid to nutrition now. It will be done by endoscopy and I will be taught how to clean it and maybe feed myself through it when I come home afterwards.
I feel more nervous about the transplant this time round – last time I think I was so busy with the kitchen I didn’t really think about it. Doesn’t help that since I came off steroids I have had big mood swings, so sometimes wake up feeling very depressed, but then feel fine a bit later. I had a very good session with my clinical psychologist last week which helped a lot, but I think as the steroid effect disperses things will get better.
I have had tummy trouble on and off for over a week. I think it started with taking Fortisip which is concentrated food supplement in small bottles. I was told I still need fattening up, so started taking one a day, but on about the 4th or 5th day I got the runs (couldn’t find any other explanation) and now my bowels are well and truly irritable. I am coping by taking the odd Loperimide and Dioralyte which help, but after eating a lot of veg yesterday I’m back on the loo again lol! Next time I take the Fortisip I’ll take it over a long period and with water. Not risking it atm. It does seem that other people have the same problem.
I am also very tired on and off and needing to nap frequently some days. Not quite sure why – I expected to have recovered from the chemo a bit more quickly as it’s a while now. I think I have expected too much of myself too soon. However, Bob and I are trying to go for a walk most evenings and I like to do some activity during the day, even if it’s just pottering in the garden.
The kitchen units etc are all in. Decorators are coming in July after I go into hospital (hooray!) and also we are having flooring put down various areas of the downstairs at vast expense. All work on the house has to be completed before I come out of hospital as fungal spores live in plaster and can affect people with low immune systems. Bob’s got to finish refurbishing the ensuite shower. So plenty for him to do what with that and other DIY jobs.
I will try to do another entry before I go into hospital. It is not certain yet as the donor is still having tests, so we won’t count our chickens!