27/11/25 Something strange...

.... happened during yesterday's chemo session, although I rather doubt it had anything to do with the treatment. 

For months now my walking has been getting gradually worse. A year ago I thought nothing of walking into the High Street and back (that's about 15 minutes when it was good, twenty or more recently). Hard to say exactly what's been wrong, I just don't seem to go any faster or for longer without needing a rest.

The moment I left the Chemo Unit for the short walk back to the car, it felt very different. Faster with no sense of strain, the whole movement seemed easier and more natural than it has for a long time. Later at home ai found that turning on the spot was also much better. Previously that required two or three shuffles for a 90 degree turn, now I just do it in one go.

In the shower last night I found something else.For a long time I've been unable to get my left fingers into my right armpit or much past the top of my right shoulder. But now I can, and painlessly as well.

I feared that both improvements might not last through a night in bed (even a short one, it being a dex night) but all is good again this morning. Remarkable. I don't understand it. Must try to sit in the same chairs again next week...

The problems of last week are now resolved and I started Cycle 10 yesterday with both Dara and Velcade. My potassium level is back into good territory and the haemo doctors were happy to go ahead even though the cough is only marginally improved. I gather the chest X-ray didn't show anything too horrible, which is a weight off my mind. I had been having unwelcome thoughts about lung cancer. I did smoke too much for a long time and although my risk is down to non-smoker level after 34 years, that doesn't mean that it's zero. I'm also very aware of the recent death of a friend in the Netherlands who gave up cigarettes much more recently but paid the ultimate price.

Anyway, news is all good this morning. Nice to have a day like that, long may it last.

20/11/2025 Updating...

Things went wrong - or at least unexpectedly - in my chemo session yesterday. For a start I had an hour's wait after the appointment time before a nurse called me in. Then I decided it was time to tell about a chesty cough I've had for three or weeks now and which isn't going away on its own. I nearly talked about it the week before but as there are no indicators of infection I didn't. Anyway, the nurse summoned a doctor from Haematology to have a look and a listen. Fortunately he arrived quickly, and not the same one as I've seen before. This one was much better. He got his stethoscope out and listened to my chest, concentrating on left side but wouldn't be drawn too much on what he heard. But he ordered a chest X-ray and more blood tests (!!! - I only had three blood draws last week!!!) and went off upstairs to talk tvo my consultant.

Then what I already sensed was inevitable happened - no treatment this week "just in case" - of what I'm not quite sure but presumably some lurking infection. I got a printout of my last few bloods, and they do show a number of the white cell counts being very slightly above normal, but not enough that anybody had commented before.

Was pleased to get a phone call yesterday with an X-ray appointment next Monday, which is pretty fast and will let the consultant have a look at the results before making a decision about next Wednesday's chemo. Even better that the times work out so I can combine it with my next Zometa, so only one trip up Broomfield Road required.

I had a 'phone consultation earlier today - she was almost two hours late, which did not please me very much. Hanging about waiting for important phone calls is not my favourite thing.

Free light chain ratio is good, paraproteins still too low to measure, so that's all good. The Velcade / Bortezomib will stop after the next cycle (which I hope will start next week) and the Zometa will continue until two years done, which will be June 2027. I think NHS funding limits is the main reason for stopping the Velcade...

Otherwise things go on as usual. No dex this week, so it will be interesting to see how the fatigue issue develops. I would have welcomed a dex sleepless night tonight, as Day One of the first Test in Australia starts at 2:30 am. I intend to stay up for the first hour or so whatever happens, maybe catch a bit of sleep first.

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.