30/08/2025 Long time...

Long time since I posted, and that's mainly because non-myeloma health issues have rather taken over these last few weeks. First there;'s that rather nasty fall a few weeks ago. Although the black eye is now almost gone (thanks to lots of arnica gel, which I think has helped), my confidence on foot is nowhere near back to where it was. I do not want another experience like that one! So my daily step count is way down, I've abandoned the Nordic walking in the corridors as too risky for the time being, and I'm barely going outside without a walker or two sticks - or making more use of the scooter which is all very well for fresh air but does nothing for exercise. I need to get back to more movement again but with the temperatures starting to go autumnal the longer walks in the park etc. are less attractive. And of course my boules sessions once or twice a week have been cancelled more often than not since the fall. None of that helps, but it's just a bad patch I need to get through.

The other thing is that I've developed what I think is best described as an ischeo-gluteal bursa - that's a swollen cyst-like lump on my left hip bone, right at the point you sit on. And as I naturally tend to sit with more of my weight on that side, that's been something of a problem. I first noticed a bit of a lump there a few months ago but it didn't cause much problem apart from a bit of pain when sitting, but two or three weeks ago it got bigger and more sore and tender and very painful when sitting, so obviously something had to be done. Last week at my 4pm chemo when the nurse asked the usual "How have you been this week?" question I told her, she had a look and immediately decided to call in a doctor from haematology, consult my consultant, and send me straight off to A&E. 

Consultant decided to cancel the treatment (a Velcade-only day) because of possible infection complications, and I got wheeled off to A&E, Sue following on foot. We waited, I got poked and prodded by various people in between waiting some more, and eventually got seen by a couple of docs from Surgery who decided that it needed draining and they could do it straight away under a local anaesthetic, or next day with a general. I decided to go for straight away.

The anaesthetic injection wasn't exactly fun, but it worked. They did the job, dressed the wound, gave me some antibiotics, and we got home 11:15pm. Oh well...

That was last Wednesday. Today (Saturday night) still a little pus drainage going on but manageable, and I've got past the "no soap, water only!" stage, thank the lord. And this week we start the next chemo cycle with Dara and Velcade, and I hope everything else will be back to normal. Whatever that is these days.

12/08/2025 Cycle 6 tomorrow

Temperature is still 31C outside at 9:20pm! I haven't done a thing this afternoon or evening, just too hot. Likely to be as bad tomorrow and Thursday, when we have a concert at Saffron Hall in the evening. Fortunately I should be on a dex high by then.

Tomorrow should be both Dara and Velcade, then Velcade alone for the following two weeks. So that means tomorrow will include the one-hour wait for the pills to take effect. THat should give me time to finish Richard Osman's "The Last Devil to Die" - I've barely managed a page for the last two times. Nevertheless, detective fiction - not a genre I generally have much time for- seems well-suited to reading in the waiting rom. If that means anything, I don't know what it is.

 The physio business has come to an end. There was some doubt as to whether the GP was supposed to contact me or the other way round. We chanced to meet the haematology doctor in question in the corridor outside the chemo unit last week, Sue got his attention and asked him. Turns out we were supposed to contact the GP (and also that he hadn't written the letter he said he was going to write. So, as the surgery is not far off the route back home from the hospital we called in and explained. And got offered an appointment the following morning!

Somehow typical of the NHS to produce an unpresented burst of super-efficiency just when I'd rather the whole thing had got buried in the usual pile of administrative incompetence. But we turned up, met the very pleasant physio, and he agreed that he knew nothing at all about issues of fatigue, muscle weakness, bone and joint problems in blood and bone cancer patients. He salved his conscience by printing off a page of very obvious hip exercises, agreed he was being used as a "Physio of Last Resort" ("it happens a lot", he said) and we parted on good terms but with nothing useful achieved. And that, I hope, is the end of that little story.

Enough for now, I must try to get some sleep on this very hot night...

10/08/2025 Happy Birthday...

 ...to my Myeloma! It's six years since we knew beyond doubt that I've got it, although the formal diagnosis, letters, etc. took another month. Still just the on relapse, second line treatment is going well (although not without some problems), and plenty more new treatments coming through the pipeline. Things are a lot better than they might have ben and I'll give thanks for that.

There are other things in the queue to write about, but they can wait another day or two for the next post. Today is about those six years. And the next six...