Been to clinic yesterday for my weekly blood tests and review. My kidneys are improving, though they are not back to where they were six months ago. The Ciclosporin is nephrotoxic so this is not very surprising. Some of the chemotherapy drugs I had ten weeks ago were toxic to the kidneys as well and I still get side effects from some of them, rashes, no hair etc.
Prof Russell is very keen to get me off the Ciclosporin as soon as possible so the dose was reduced again yesterday. There was a slight mishap last week. We had a phone call on Friday afternoon telling us to increase the Ciclosporin dose slightly thereby reversing the reduction of the previous day. It turns out the wires got crossed somewhere and I should have stayed on the lower dose. A minor problem and no harm done. I'm now back on course.
I've gained a kilo in the last month so the dietician doesn't want to see me anymore but I still have to take a daily Complan build up drink and a Fortisip for the foreseeable future, yuk! We have enough in stock to last another couple of months at least worse luck.
Gradually I coming back to life, more doors are opening. I'm doing more, seeing more people and gettting out beyond Burlington Road more thanks mainly to Karine's love, care and encouragement pushing me when I need it and protecting me from myself and also thanks to the Haematology department's continuity of care and close follow up.
I'm getting to know some of the rehab group a little, I can even remember a few of their names! They are a very sympathetic and supportive bunch, always very positive which is just what I need. It's leaked out that I used to be a quack but no one has held that against me yet! The physiotherapy is quite hard work especially the upper body stuff so it must be doing me good.
Today my brother Richard called round and we went for a walk round Mill Lakes in Bestwood village. I'm not sure of the distance but I managed two circuits which is a first, so I feel quite pleased with myself. It was great to see him and to talk about everything under the sun - well it has been a sunny day!
Karine has been involved in the Macmillan 'Biggest Coffe Morning in the World' all day at the Tewkesbury's, next door. She and Janet have done both a morning and an afternoon session. It is still going on now in the late afternoon. Lots of cakes and lots of people. I went along this morning and stayed for about 45 minutes. It was great to catch up with friends and neighbours but it's difficult to follow conversations when there are so many people in the room.
Macmillan have been very helpful to us. Their booklets and leaflets on everything from Living with Cancer to AML, from dietary advice to Stem Cell Transplants etc etc have been invaluable to both of us. The are both authoritative and well written. I didn't know a great lot about stem cell transplants apart from the general principals. They are one thing but the reality of actually going through it is a completely different matter!
* Ian Rankin, "Doors Open"
** Beatles "Sgt Pepper's Lonely Hearts Club Band" of course - track 9
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