19/10/2025 Three...

Nothing much to report again. Chemo continues as usual on the same three-week cycle. Dex is now down to 20mg per week and - as happened during first line - the sleeplessness effect is not as strong as it was. So haven't been up until 4am or so for a while now.

The abscess is just about fully healed now, no longer a pain on sitting and I've been able to do a couple of longish car journeys without needing a cushion. I think we can write that little incident off as in he past now.

As for the future, next week includes no fewer than three blood test appointments: one on Monday before my next Zometa, one on Tuesday before Wednesday's chemo, and one on Friday from the GP surgery after my "Long Term Conditions Review" last week. Good thing I live little more than five minutes walk away from the test centre and can park right outside with my Blue Badge if necessary. So if this turns out to be my last ever post, you'll know what happened. Unexpected death due to loss of blood...

A little more realistically, I'll be interested to see my Hba1c (diabetes) result, because I've lost a lot of weight since the last one, which should mean a big improvement and getting well clear of the "pre-diabetes" danger zone. I hope.

20/09/2025 Six!

Should have posted this yesterday, because the 19th was the sixth anniversary of my formal myeloma diagnosis "multiple myeloma type IgG kappa" and "a new aggressive myeloma". I've not done too badly so far, and rather better than that consultant predicted!

11/09/2025 Back to normal

Started Cycle 7 of chemo last Wednesday as normal, which is something of a relief after two weeks missed because of the bursa / cyst / abscess / whatever it was. Still tender after the minor surgery, but not in a bad way. Going down to Dorset tomorrow for my sister's birthday and not exactly looking forward to three hours in the car - will need lots of service station breaks to give it a rest.  

Now trying to correct a lifelong habit of sitting with more of my weight on the left. Cunningly placed cushions help. 

03/09/2025 The story continues...

Last (Tuesday) night was my first without any discharge at all so it was a little disappointing to get a phone call from Chemo this morning cancelling today's chemo session as the docs had had a conference and decided still too much chance of infection complications. 

Sent to my GP for "review" and another week of antibiotics, which I've now got. So if it's any consolation, at least the NHS worked fast and efficiently this time. Which is more than can be said for the farcical new disabled parking system at Broomfield, but that's story for another time.

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...