Well quite a while since I last wrote. I managed to be at home for Xmas – Bob did both the cake – delicious- and the Xmas dinner (I just did the sprouts!), and the kids and their partners had Xmas dinner with the other parents and then came for an orgy of present swapping and a buffet in the evening.
I have started my immunoglobulin IV at Leicester General – got hopelessly lost on our first appt! They up the delivery rate very slowly and I was told a lady had, very unusually, had a bad reaction very recently, which had obviously frightened everyone. It probably wasn’t the best time to tell me that, as I spent the first session wondering if I was suddenly going to keel over, but luckily I didn’t. I didn’t seem to have any side effects except being rather more tired than usual, though tiredness is a default state with me, especially after long trips. I’ve had 2 sessions so far.
Once I am fully ‘loaded’ it looks as if I might be able to have my IV at Northampton every three weeks, which will be great, as my my haem consultant appts are being moved to N’ton too. So I will only need to travel to Leicester if I am ill, or if I have to have procedures.
My own immune system has apparently shown some signs of life. I have been taken off my immunosuppressant (Ciclosporin) and am down to 2 mg of steroids a day. However, my paraproteins have shown a rise. This does not necessarily mean a return of the disease, but they need to keep an eye on them. I should be having a free light chain test next visit so we’ll get a better idea.
I was put on Azithromycin (antibiotic) before I started my IV, and didn’t like it much. I happened to mention that my hearing felt as if it was that sensation you get before they pop, and she immediately took me off them, so watch out for that if you are prescribed them. You can become deaf. I’m now on a lowish dose of Amoxycillin.
Generally I’m not too bad. I still suffer tiredness. This is partly as I weaned myself slowly off zopiclone, and now can’t sleep until about 2am. My haem consultant warned me against the ‘push too hard and then collapse’ syndrome which happens with lots of patients. I walk every day and try to keep active. Since Xmas I have gradually developed very achy muscles and joints. It started with my knees and now affects much of my body, but it makes me limp sometimes, as my calves are quite bad. I’ve had to take paracetamol a few times. It’s worse in the early morning and evening. I gather transplant GVHD can cause this, and I have been coming down off the immunosuppressants, so it could be that. Will be raising it with my consultant next week.
I also have a sore mouth, lips and tongue and nothing seems to work on them. I get a red and sometimes itchy rash on my neck and my skin sometimes flakes very badly. However, these are all relatively minor, though they do make me grumble!
My PEG should be coming out in the next few weeks. I am eating more, though have lost a bit of weight. After 40 years of not eating meat (do eat fish) I have tried my first bit of meat – a rasher of bacon. My consultant said I needed more protein to build my muscles and I kept having weird dreams about getting to the serving area in a canteen and finding they had run out of food!!! I can’t eat much cheese since my gallbladder came out, I find nuts indigestible, beans too windy and there is only so much fish and egg you can eat. My digestive system obviously wasn’t sure about the bacon, but I will keep trying. There are meats like chicken I just don’t want. I don’t need much as we all eat too much protein anyway. I was quite surprised that the bacon, which was supposed to be good quality, was not as tasty as I remembered.
The other problem I have is memory loss and lack of concentration. Both my long and short term memory seem very bad, though short term is worst. I can still do a fair number of University Challenge questions, but am hopeless at programmes like Only Connect and Countdown. Not that I was brilliant before! I can’t do the Guardian quick crossword and have really struggled with cryptics. Names are beyond me, and I have many ‘senior’ moments. Bob and I would be stuck without the ‘pause’ on the TV as he’s always struggled with plots, not being a novel reader, and now I can’t do them either. In fact he’s better then me now. Also, my written work is full of typos and I have forgotten some of my spellings, so forgive my mistakes! Just hope the brain cells will return.
To finish with – I was very sorry to find out that Mike Marqusee, the writer and poet, who had MM too, died recently. His poems about having MM in his collection ‘Street Music’ are well worth reading by patients, carers and medical staff. http://www.mikemarqusee.com/