Had my weekly clinic visit together with the usual bloodletting yesterday. Everything stable which is good news. Prof Russell reduced my Ciclosporin again and confirmed the plan was to continue reducing it at this rate so it will stop at about the end of October barring unforeseen problems. I am now down to 104 tablets per week! Karine has pointed out that this is a little misleading since for example when I go from Ciclosporin 50mg twice a day to 40mg twice a day I'll be switching from a single 50mg tab to four 10mg tabs. Nevertheless the load is going down and I don't have so many of the huge tablets to swallow. There are moments when I feel very fed with all the tablets especially first thing in the morning when there is half a dozen or more to take. I can see very well why patients don't always comply with them and feel like throwing the whole lot away. Multiple tablets five times a day and different amounts on different days isn't easy to maintain for months on end.
Prof also indicated that he would start reducing the antiviral drug in about three months times. Another sign that things are going well- so far! No MRD result yet, perhaps next week! My weight continues to creep up very slowly which is a good sign. I'm now about 6kg under my usual weight.
I still tire easily and can't control my temperature very well. I need to wear a ridiculous amount of clothing just to keep warm. I'm still full of cold and very deaf. The infection in my left ear has settled thanks to drops from the GP. I see ENT a week on Tuesday.
Before seeing Prof Russell, I did a quality of life questionnaire as part of the Figaro trial which I am on. Basically my quality of life is 'rubbish to mediocre' - those weren't the actual names of the categories for some reason! Overall though I continue to improve little by little so there is a distant light at the end of this very long black tunnel. I feel as though I've been to death's door (which with hindsight was frightenly easy, I had no idea how parlous a state I was in in the weeks leading up to being diagnosed) and have returned from that dark place by way of hell, a very rough road indeed.
After seeing Prof, Lynne the transplant nurse had me do a walking test in the outpatient corridor which consisted of walking up and down a given length at ever increasing speeds till either I or she had had enough! She gave up first so I passed!
For my reward! I was sent to the Haematolgy rehab session which started a little later that morning in the physiotherapy department. Just time for Karine and I to have a drink at the marvellous Maggies Centre which is on the hospital campus and then an hour's gentle exercise/work out (for me that is!) in a hospital gym mostly to '70s disco music though they did finish with Peter Green & Fleetwood Mac's Albatross. This was followed by tea and buns and a Q & A session for an hour with one of the haematology registrars and a specialist nurse. Karine was with me the whole time which was invaluable since I couldn't follow the conversation.
There are about 6 or 8 of us in the group and they seem a friendly bunch. Everyone of us has had a stem cell transplant for some sort of haematology cancer, mostly leukaemia and lymphoma of course. It is marvellous that the NHS provides this kind of ongoing support. It is tough getting going again after the kind of chemotherapy onslaught we've all been through and this is an excellent way of building morale and helping us to start getting back to a normal life, so important. Nominally it is for ten sessions but they are very relaxed about you staying on if you wish to. At least two of the group have been coming for a year. It is not uncommon for new side effects and problems to arise later and to have a group like this to turn to is invaluable.
Today, Friday,we went into town to have a look at a small exhibition of treasures from Chatsworth. It was great just to go somewhere different. We had lunch in town by which time I was 'pooped' and was glad to come home for a nap. Another step along the road back towards 'life'.
Next time. Perhaps something about the Maggies Centre.
* Amy Winehouse "Back to Black" first track
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