07/12/21 November bloods

November blood test results came through yesterday - all good. Paraproteins still at zero, all three free light chain numbers in normal range, kidney & liver functions all OK. And the new Haemoglobin A1c test (which gives a picture of blood glucose over three months or so rather than instantaneously like any finger-prick BSL test) puts me comfortably within the OK zone - so no question of the dex raising blood sugar to potentially diabetic levels.

Just as the finger split on my right thumb is starting to heal nicely, I've got a new one coming on side of right middle finger...

Possibly a new micro-rash near the base of my left thumbnail. Only 1 or 2mm across and hardly enough to impress a dermatologist, if and when I ever get to see one.

I pulled out of boules at Epping partly because of the weather forecast (cold, wet) and partly because I felt I needed a day to recover from Wethersfield. I just don't have the resources and the stamina to shrug something like that off without giving myself time to get back to square one. Too much goes into keeping the myeloma at bay, and I don't intend to give it a chance to come back. That's not very scientifically defensible, but it's my body and I know what it's telling me. Or I think I do.

Anyway, another day at home. Spent some of the morning replacing the timer-operated LED lamp in the side passage - a trickier job than it might sound and particularly annoying as the last one lasted only a few months. Getting cold fingers doing that is probably what's set off that new finger split, even though I was as careful as possible to keep my hands from getting too cold. But there are some things you just can't do with gloves on.

It seems that a red ribbon is a recognised symbol for myeloma. Well, I've had it for over two years and I didn't know, but...

06/12/21 Wethersfield, Belle

Yesterday morning played for Tower 5 in the Essex & Herts Winter League at Wethersfield. The terrain there is  shallow layer of  pea shingle over a hard base and it was very wet - result: very little roll and difficult ro get length right. Nevertheless, on a cold, wet, rainy,and windy morning we won by a very satisfactory 13-6 and 13-1. Towards the later part of the second game I was getting rather uncomfortable with the weather and dreading a return of the strange phenomenon on a similar evening at Tower a few weeks ago. No sign of it yet, but I haven't been to bed yet either. I don't need another night like that one!

No more Winter League matches until March, we take Jan & Feb off.

Nothing new on the myeloma front. No mini-rashes have appeared for several days, the finger splits are under control and the right thumb one has now moved into the healing phase - I hope, and as long as I can avoid opening it up again.

Finally, and in the interests of feline equality, here's a shot of Belle (our other rescue ncat) that Sue posted on Facebook. She's very good at using that trick of raising one front paw in the air to get attention, and she has the most wonderful eyes...

05/12/21 Lagevrio aka Molnupiravir

When I started this blog my intention was to write an update every one or two days and a little over two years later I've stuck to that pretty well. I haven't missed many days, although sometimes it's been a struggle to come up with something. Today there's nothing I haven't written about before (probably too many times) except something from the Telegraph, even if it is primarily about covid but the myeloma relevance is there:

"The first at-home treatment for Covid is to be offered to patients by Christmas as ministers roll out the antiviral pill to help protect the most vulnerable from the omicron variant.

Sajid Javid, the Health Secretary, is preparing to announce the start of a national pilot of Lagevrio, also known as Molnupiravir – the "game-changing" pill that Britain became the first country to license last month.

Under the plans, the NHS is expected to deliver courses of the tablet to clinically vulnerable and immunosuppressed patients within as little as 48 hours of them testing positive for Covid."

Good news indeed. That gets us halfway towards my criterion of two effective treatments before I think about returning to live music.

04/12/21 Pills, Blue

The foot is 100% back o normal now - I can do the Achilles exercise without a trace of a problem. To compensate for that, the right thumb split is now at its most painful stage...

Did Pill Organisation in the morning, so as to be free of it over the weekend:

Pity about the flash reflections, but every compartment is used. The red box has the cancer meds and supporting pills, the green one has various supplements, and the blue one has non-cancer meds. I've been using the system for over two years, and it works for me.

A bit warmer than the last few days so in the afternoon I ventured out to Ongar for a bit of practice ahead of the Winter League match on Sunday morning (weather permitting), but nobody else was there, the piste was very wet, and it started to rain. So I got my lunch from Tesco over the road and went home again.

Nothing new about myeloma except an invitation to another research study. Not sure this one is quite right for me but I think I'll apply anyway.

Here - just because I like it - is a photo of our blue (i.e. grey) rescue cat Blue fast asleep on my chair downstairs, turned into black & white:

03/12/21 Cold....

The foot is 99% ok now - the best test is an exercise I used to do after my Achilles tendon operation. Ankle fully flexed, rotate foot clockwise. I'm still getting a tiny trace of pain in the arc between 5 or 10 past the imaginary hour and about twenty-five to. When the pain is bad - forget it!  We'll see how it behaves in the morning.

It was another very cold day yesterday, temperature not getting more than a degree or two above zero. I stayed in all day but still somehow managed to beat my activity target quite comfortably. Didn't fall asleep too much either. I didn't go to Birchanger boules because it was too cold for me as well as too far to travel for what would probably have been just one game.

No new mini-rashes have appeared for a week or so - unless they now move so fast that I miss them...

Still awaiting contact from the respiratory man (for my CPAP machine, due sometime this month) and from the dermatologists at Broomfield.

Otherwise, things keep ticking over as usual during this period of remission, long may it last. There are downsides - the fatigue and my general physical slowness and lack of stamina - but I'll happily take them instead of the alternative.

02/12/21 Foot again

I don't understand this right foot pain. It had faded away completely by early afternoon yesterday and it didn't trouble me at all overnight. But as soon as I got up it appeared again, even if only at 10% of its worst. Still just a trace of it left mid-afternoon. Doesn't make any sense at all.

01/12/21 (2) Panic over, and bad night

We've been told today that the musician who had the positive Lateral Flow Test result has since had a negative PCR result, and so has his family.. So it looks as if the LFT was a false positive, and we return to our normal level of precautions. Still, just thinking it all through was a valuable exercise in preparation for nest time. If there is a next time.

Went to bed about 03:00 (after falling asleep in my study again), and then the old familiar and excruciating pain in my right foot started up, and it kept going until somewhat after 09:00 when it began to fade. Possibly a liberal application of Ibuleve in the morning helped. Sleep very disrupted!

I don't know what causes this but suspicion must lie with the shoes I was wearing during that long Ongar walk. They're extra-wide, high instep, and have three velcro straps instead of laces - IOW  they should be ideal for me.but this is at least the second or third time I've  had trouble after wearing them - and by far the worst