07/01/22 Left arm

Ankle oedema is up again but I'm not planning on going anywhere later today (got to stay in for window cleaner, Tesco delivery, etc..) so should be a good day for a Furosemide.

A few mini-rashes are back.

The left arm is a problem. The fingers tick most of the boxes for early PN. Higher up it's completely different. I have the chronic stiffness etc. from the neck along to the point of the shoulder, and then there is a big loss of mobility at the shoulder joint - it's very much like the recovery period from when I broke it back in 2017. In fact I've started doing some of the physio exercises I had back then to mobilise the joint - but very gently. Between shoulder and wrist the arm is very weak and I find myself avoiding using it so it just hangs there like a dead fish. I'm typing this 95% right hand only because the left hand just doesn't want to get involved. I'm wondering whether just the colder weather has set something off in that old injury...

Good news about the th COVID vaccination - thanks to our Practice Manager both Sue and I have appointments on the11th.

06/01/21 Good results, bad days

Not the best couple of days. But first, the good news.  Blood test results from just before Christmas are good - paraproteins still zero ad light chains all normal. And I fInally have the full FISH (genetics) report from my bone marrow biopsy two years ago. 

Basically that means I have just the one myeloma mutation that we know about already, and I don't have any of the other common ones. That may go some way to explain why my myeloma seems rather less aggressive than many others.

The last two days have been perhaps the worst since this all began. I've been all wrong both physically and for fatigue or whatever you call falling asleep all the time. I've done little else although I  did force myself up to Peppers Green Lane to just meet my activity target. But it seemed like hard work.

I have what may be early symptoms of PN (Peripheral Neuropathy) in my left hand - at least the symptoms tick nearly  all of the boxes. On the other hand, nerve compression from my chronically stiff and sore neck and left shoulder might explain equally well - and that has been really bad recently. The left shoulder is the one I broke back in 2017, and mobility there isn't as good as it was just a week or two ago - I can't get my left arm as high over my head as the other one, and I used to be able too.

All very confusing, and I'm hoping that a decent night's sleep will bring some clarity tomorrow. In the meantime it's been very cold again and my hands hate the cold these days. Just a minute or two of exposure brings on raw chapped skin and the chance of smother finger split or two...

05/01/22 Zzzzz.........

Fell asleep in the early hours of this morning without getting any further than the date for this post. More later...

04/01/22 Hanbury Clubhouse

I forgot that yesterday (Monday)  was a Bank Holiday, so no visit to the GP surgery. That will have wait until later today.

Played boules at Epping yesterday morning. Not at my best - won one, lost one, lost the decider. But at last got a chance for some interior photos of the Hanbury Clubhouse:

Not perhaps quite as fine as I'd been told, but very pleasant anyway..

That helped me reach my high activity target. Nothing else new tonight.

More or less a year ago I set myself some criteria for returning to live music: a vaccine proven to be effective in the immune-compromised, and two different treatments for COVID-19 infection. We are pretty much there, although the underlying assumptions have changed a bit - I didn't foresee anything as infectious as Omicron. There's no really good reason  to avoid going to somewhere that has top-quality anti-COVID measures in place, as several nearby jazz clubs do, but I'm still very reluctant to take that first step back towards normality. The great singer and my friend Sara Dowling is at Fleece Jazz (Stoke-by-Nayland) on the 12th - will I have the guts to go and support her?

03/01/22 Maldon, butter

 A rather cooler and windier morning but we set off anyway for a walk and lunch in Maldon's Promenade Park. For once the tide was high when we arrived, and it always looks at its best with plenty of water in covering the acres of mudflats.

(photo by Sue, taken from her Facebook page)

Perhaps fortunately for the weekly processed meat allowance, ourv favourite cafe wqas out of sausage rolls so we shared a Steak Bake between us. The sun came through and there were more people in the park than we've ever seen there, even in the height of summer.

After getting home I made two batches of butter - one "hard" and unsalted and mainly for cooking, the other "spreadable" and lightly salted for toast, sandwiches, etc.. And did the weekly clean of the cats' drinking fountain as well as cooking the house speciality dinner of pork loin in apple sauce with mashed potato left over from Tesco's Christmas vegetable box.

Why can't I persuade anybody else to make their own butter? It's simple, satisfying, and you know what's gone into it. All you need is a food processor. Give it a try!

On the Myeloma front, welcomed a new Admin to the Facebook Myeloma Support UK group to bring our numbers up to five again after one quit (his wife, the myeloma patient, died recently - but from COVID not nine years of myeloma). Nothing else new. I dropped the nightly Senna b3ecaus3 of the good chance of boules at Epping laterb this morning. It's a tactic that has worked OK so far. After that I have a prescription or two to collect from the GP surgery - must admit to having slightly lost track of things over the holiday period. And regular online backgammon with my unofficial medical adviser will resume after a a break for the holiday period.

02/01/22 Morning after

Because I was leaving after breakfast for boules at Birchanger, Sue nobly did some dusting in my study - not one of her usual household jobs. This resulted in nearly knocking the BT router off the back of the computer desk, and losing my computer glasses... I found them later, but not before having to move the desk out of position to get behind it, which is no small task. But I've got the glasses back, which is the main thing.

The observant will note Act One of La boheme on the TV (left side).

Boules at Birchanger was the annual New Year's Day "Morning After Plate". Saturday is my usual sacred non-boules day reserved for other things but I got a special dispensation from Sue in return for not playing at Ongar this morning. We aim to go out somewhere for exercise and lunch instead

I lost 5-9 in the first round, but at least my opponent went on to win the competition, so I can say I was beaten by the best!

Nothing new on the myeloma front. Still waiting for my NHS CPAP machine and appointments with the respiratory people and a dermatologist. Also waiting to hear about my fourth COVID vaccination (due Jan 10th)  and my PCR kit hasn't arrived yet..

It's a dex night and I woke up at 05:45 with that old familiar feeling. Worst sleeplessness I've had for a long time. I shall try to use the time constructively by writing a Myeloma UK post about the 4th vaccination. There is, needless to say, a lot of confusion around. Bring back Nadhim Zahawi!

01/01/22 Happy New Year

Hard to believe that this blog is now entering its fourth calendar year...

2021 wasn't a great year by any standards - from the myeloma side of things I'm in very much the same place as I was twelve months ago except  that the fatigue is perhaps rather worse. And it ended badly with two days of extreme frustration with my BT account. Finally sorted out now except that I can't see or view bills on the desktop computer for some obscure reason. May be some sort of firewall issue. Sue can do all that from her desktop, and I can do it on my phone, so that's a tolerable failure until I find a solution to it.

Of course a year ago I had still to discover the joys of petanque...