The clearout continued yesterday with the attic and even more in the garage. I've now finished with the the rooms we call the box room and the office, so now I just have the remains of the workshop and my study to do. Call it two more days... the second skip should be just about big enough. Starting to return to normality i hope - after the unintentional overdose of Laxido. No walks for the last few days but I think I've had enough exercise to compensate!
Very tired again last evening - didn't make it upstairs after dinner until nearly 10:00 and fell asleep several times before then. But as usual, had my shower at about midnight and now feel fresh as a daisy and ready to go for several hours yet... If I ever get the chance to live my life over again, I'll have to find a career that can be mainly night work.
I wrote what's below last night but left it in draft form as I'm not entirely happy with it, needs a re-write. But this blog is supposed to be an honest reflection of what I'm experiencing and feeling, so I'll let it stand.
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After catching up on the Facebook Myeloma Support Group and while watching my recording of Jazz Piano Gold from BBC4 (it somewhat predictably starts with Ellington and Brubeck), I've been reflecting on how lightly I've got off so far, now into the second year of my myeloma.
The disease itself caused that big hip lesion which made me almost unable to walk for a few weeks, even with the aid of two sticks or crutches. But just five doses of radiotherapy fixed that, and there's nothing else that can be definitely attributed to myeloma rather than to the treatment that's kept it under control.
First and foremost of course, is the daily management of the constipation problem. After that comes the loss of stamina, tiredness, "fatigue" (now we're on to Monk) and the various effects of dexamethasone, from sleeplessness to the mild mania which has kept me going over the last couple of days. I've had no significant reaction to or side-effects from anything else, and I'm almost embarrassed by the number of times people on the Facebook group ask about side-effects and all I can do is reply "I haven't had any" (Enter Count Basie with "All of Me".) Other people on the same meds suffer far worse, with wild mood swings (dex), rashes, nausea, you name it. (Jacques Loussier from 1966, followed by Stan Tracey.)
The overall pattern is easy to see - as people move through each stage of remission & relapse the disease becomes more resistant to treatment, needing new drugs and combinations with more demanding side-effects to cope with. (Oscar Peterson now). Eventually you hit the point where coping with the effects of the treatment becomes as bad or worse than coping with the disease. That, I suppose, is when the one-way ticket to Switzerland becomes an attractive option. (Chick Corea now, with a multitude of keyboards). There again I'm doing well, so far. Bone disease and consequent pain is a problem for many myeloma patients but despite having several small lesions in my spine and base of skull, the recent PET scan reported no evidence of compression fractures in my vertebrae (Geri Allen now. No Herbie Hancock? McCoy Tyner? Keith Jarrett? Let alone Earl Hines?? But we do get Ahmed Jamal) despite the way my back sometimes feels...
It's all about keeping each new stage as far away as possible while making the best of where you are. That's my plan, anyway. I'm just grateful for my early diagnosis which I'm sure has helped. And as the recent PET scan confirmed, no sign of of the compression fractures in the vertebrae which cause many myeloma patients such difficult pain. I don't want my spinal column reinforced with cement, which appears to be the only treatment. (Herbie Hancock now, followed by Reuben Gonzalez (who?) and Abdullah Ibrahim aka Dollar Brand, then Diana Krall. She can sing, but hardly a great pianist!).
No live music for seven months. How have I coped with that? Could easily be seven more before it starts up again for me. At least there are some positive stories coming through about the Oxford / Astra Zeneca vaccine being ready as soon as December, and other vaccines doing well in trials. Some grounds for optimism there although still big questions about how effective these vaccines will be and whether they will work for the immune-supressed. I hope they will, because I don't want to spend the rest of my life in permanent hiding from SARS-COVID-2. Better to get it at a time of my own choosing and take my chances...
The programme finished with Diana Krall. A strange choice.
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