Thursday's clinic saw my weight start to increase a little at last. The dietitian, Jo Potter, is happier but still wants to see me every week until my BMI is back to something like normal. Currently it's about 18.5 and I think she wants it at 20.
Also, saw one of my two consultants. Prof was at a conference. The two reductions in prednisolone in the last week from 30mg to 20mg and then down to 10mg on Monday are causing my colon to 'wobble' a bit. The reduced dose allows the bone marrow graft to thrive but unfortunately also to attack my colon at the same time. Presumably it still thinks my colon is foreign.
She restarted the Budesonide which I had had two months ago when then GvHD first started. This is a milder steroid than prednisolone and is poorly absorbed from the gut so it acts mainly as a topical treatment for the bowel. There are fewer systemic side effects. The plan is to calm down the bowel without damping down the recovery of the bone marrow and use the Budesonide to cover coming off the prednisolone which hopefully will happen over the next few weeks.
Meanwhile I'm gradually getting a few more side effects with the prednisolone. A so called 'moon' face and a 'healthy' red glow in my cheeks are the most obvious ones. The other immunosuppressant ciclosporin stays the same for the moment. Other side effects include trembliness as before, and two other problems that Karine rightly pointed out are an exaggeration of pre-existing traits, namely clumsiness and absent mindedness. Actually it's now just plain forgetfulness. I'm hoping it's the ciclosporin, my old friend 'chemo brain'. Talking to fellow sufferers in rehab where we're all blood cancer patients most of whom had a transplant many of them have or have had the same problem. It seems it does go.............eventually.
Overall my energy levels and sense of well being are slowly improving. There are good and bad days and I'm still a shadow of my former self but gradually becoming less so as the weeks tick by. I've just started to drive again in the past week or so after a complete break of over seven months!
Managed a very slow walk around the local park which I haven't been able to do at all since the GvHD started about nine weeks ago. It's on a hill so much harder than walking on the level. A small victory but a victory nonetheless.
Changing the subject, one of the best things that the haematology department provides is 'continuity of care'. It is rare to see someone completely new. Everyone I see knows my case well and I guess they know my qwerks and foibles and how to deal with me! From a patient's point of view this is incredibly reassuring especially when there are ongoing problems. As an inpatient too, you see the same consultants and many of the juniors and ancillary staff are familiar from previous stays in hospital or from outpatients. The turnover of nurses and ancillary staff is low so lots of old friends are here as well.
This all adds up to a service that is not only very professional with a high level of of knowledge and expertise but also one that makes you feel like a real individual, that really cares about you as a person, a truly 'personal service' to coin a phrase. It makes you feel like a special patient. Then sitting in outpatients waiting to be seen (never a long wait) you see other patients being welcomed and treated in the exactly same way and you realise that we are all their special patients.
I've long felt that the neo con obsession with choice which governments of all persuasions here have been foisting on us for the last twenty years or more is an aberration based on a fundamental misunderstanding of human nature. In a health care setting and in many other areas of life too much choice is confusing and causes anxiety. Continuity of care does the opposite. I come out of outpatients every week feeling very positive even when there are problems that are not going well such as the GvHD back in October - a real boost.
Rant mode off!
I couldn't resist another quote or two from Ambrose Bierce's sardonic Devil's Dictionary published in 1911.
Physician, n. One upon whom we set our hopes when ill and our dogs when well.
The first definition I ever came across was this.....
Artillery Piece, n. Device for moving international boundaries. Curiously this definition appears in the French edition but I can't find it anywhere in the American version.
* Paul Simon - from his very first solo album in 1965, The Paul Simon Songbook - a line from Kathy's Song.
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