06/11/21 (2) Hands

Did Pill Organisation this morning (still took me the best part of an hour). Much better to have it back on a Saturday morning.

Backs of both hands in a bit of a mess today, and I don't know why.

That larger thing on my little finger might well be a micro-rash, even though it's no more than 2mm across.

My right hand is a bit of a mess - no idea where all those spots,lesions, abrasions, whatever they are - I don't know where they came from. No bigger ones anywhere else that I can see.                                 

I've even got one on my nose.....

Ankle oedema is still there, but just short of the level that makes me reach for the Furosemide. I've got some 40mg in stock, just in case.

06/11/21 October bloods, dermatology

The October blood test results came through yesterday - #33 and counting - and the good news is that paraproteins are still at zero, free light chains are all within normal range, and everything else is either normal or close enough not to worry about.

Went to Ongar in the afternoon for a little gentle practice to test my right arm out. It's OK, just about, and I'm reasonably certain that after another day's rest I'll be fine for the Winter League game on Sunday morning. Playing a match is less intensive than practice as you have to wait for everyone else to take their turn.

MyelomaUK has produced a document and a letter addressing the never-ending problem of confusion over the third COVID vaccine - Primary 3 or Booster or what? Unfortunately it isn't as well-written as it might  be and probably does as much to increase confusion as to resolve it. By strange coincidence they also sent me a document about MGUS to review and check for readability...

Finished the  RUDY questionnaires that I have to do every six months for the PREPARE study. It seemed much harder to get through this time, and I'm far from sure about some of my answers.

I had a letter from the NHS about my dermatology referral for these mini-rashes that might be vasculitis (and suggestive of more serious blood vessel inflammation internally), or a harmless side-effect of lenalidomide, or almost anything. I was offered a choice of five hospitals to make an appointment - every one of them said "There are currently no appointments available for you to select at this clinic".

NHS admin triumphs again!

So, as suggested, I've sent an appointment request to Broomfield. Now we wait for something to happen. And wait. And wait some more...

05/11/21 Antibodies again, and senna

I asked Superdrug if they could give me more detail on the antibody test result, beyond just ">0.8U/ml" which appears to be the threshold between a negative and a positive result, and this came back:

-------------------------------------------------------------------

Dear Mr Crisp,

Thanks for contacting us. 

Your spike protein antibody level is:

Outcomes
COVID-19 SEROLOGY	.
Roche Anti-SARS-CoV-2-S Result	1322.0 U/mL
Anti-SARS-CoV-2-S Qualitative	POSITIVE
	< 0.8 U/mL Negative
	>= 0.8 U/mL Positive
Clinical Comment	SARS-CoV-2-S Total Ab Positive
	Consistent with either SARS-CoV-2 infection or
	immunisation at some time.
	Methodology: Roche ECLIA

This is as reported by our lab using the Roche Elecsys® Anti-SARS-CoV-2 S test. 

There is, as yet, no international standard for antibody levels, and therefore your value is not comparable to any other test result. The units and measuring criteria Roche use are for their analysis alone. And because this is a new and emerging field with limited data, we are unable to say whether your level is high or low, or how much immunity this might provide you with. We also cannot say how long it might remain at this level; we just don’t know yet. 

Thank you for using Superdrug Online Doctor.

--------------------------------------------------------------------

That puts me some 1,650 times above the 0.8 threshold which has got to be better than being close to it. I'm very happy with the result despite the various unknowns. It seems to me that it shows that my immune system is still in a good enough state to mount a defence against COVID-19 spike protein antigens. Given that capability plus whatever memory functions there may be, it looks as if I'm in a pretty good place to deal with any COVID infection I might get. Which is encouraging, but isn't going to stop me being careful!

Otherwise, another rather lazy day at home concentrating on recovery from that right shoulder injury. It feels pretty good now and if anything the problems have moved to the left, which is their more usual  home. Nevertheless I did somehow beat my rather modest activity target.

My main concern is to be in good shape for the Winter League match at Earl's Colne on Sunday morning. If the weather's OK later I'll go to Ongar for some gentle practice, and do my best to avoid getting drawn into a game and pushing the shoulder too far.

I haven't mentioned the constipation issue for a while, mainly because it's going reasonably well. I haven't needed a Fybogel or a Laxido for several weeks and I get along on one Senna a night - or none if I want to be sure of a clear morning, usually followed by a compensatory two the next night to get back to the standard seven Sennas a week. It's a considerable relief to have reached this level of predictability and control after what went before... I just hope it lasts. One of the less agreeable side-effects of the treatment.

04/11/21 Papermill Lock, chargers, antibodies

Went to Papermill Lock on the Chelmer & Blackwater Navigation for a walk along the towpath and then lunch at the cafe (toasted cheese, red onion, and tomato sandwich with crisps and a pot of strangely unpleasant coleslaw. But I did finish it. We had a  small boat there years  ago and then sold it to move up to a share in a  syndicate narrowboat on the canals, and then a share in a cruiser on  the Norfolk Broads. But age and arthritis etc.caught up with us - and that was a few years before myeloma struck.  Should have done it long ago...

Note your indefatigable blogger well defended against the cold and the finger splits! And the cappuccino was not too bad at all.

I spent most of the evening re-organising my many chargers and rechargeable devices onto what is now the spare computer desk at the back of my study.  I've moved the rather old giant notebook HP computer that used to live there out - it hasn't got an operating system on it at the moment so it's been taking up space for no good reason. A "one of these days" project is to put an up-to-date Linux distro onto it.

That's not everything that could go there. Not by some distance.

This reorganisation needed quite a bit of getting down onto the floor and grovelling around under that desk. The getting down is easy but the getting up again is another matter...

The new micro-rash I mentioned yesterday hasn't developed any further and ,looks likely to fade away tomorrow. More of a micro-rash TBH, or even a nano-rash.

Best news of the day - the result of my COVID antibody test is in:

----------------------------------------------------------

Dear Mr Crisp

Your result is POSITIVE for the SARS-CoV-2 spike protein antibody (>0.8 U/ml).

This means you have COVID-19 antibodies. Unfortunately, at this point in time we can’t say exactly what that means about long term immunity yet. 

--------------------------------------------------------------------

I'll settle for "Positive". That's very good news indeed.

03/11/21 Right shoulder, backgammon, chargers.

The right shoulder / neck is much improved, and probably helped by sacrificing an evening's boules yesterday. Depending on how things go with the weather we're planning lunch and a walk at Papermill Lock, I might go for an hour or so of gentle practice at Ongar in the afternoon. The trouble is that you go for a quiet practice at your own pace, and then you get drawn into a game.... Then online backgammon at 17:00. I've had an extraordinary run of good dice for a couple of weeks, but it can't last much longer. I'm almost looking forward to the pendulum swinging back the other way, just to confirm that the Cosmic Balance always wins in the end.

T

Too many rechargeable devices - my Samsung smartwatch (now somehow restored to health after recent problems I may not have mentioned), my "spare" watch / fitness tracker, my Oura Ring, my USB handwarmer and two batteries for the heated gloves, the EarPAP, my phone, my Surface laptop, and a few more. I'm setting out to rationalise the whole spiderweb of chargers and charging cables.That's a project that should keep me busy for a day or three and won't do my boule-throwing arm any harm..

I mentioned my phone, which now spends its nights on my bedside table running several "health" apps including SnoreLab - which last night gave ne a Snore Score of 151. Which is not good. Still waiting for my Christmas present of a shiny new CPAP machine from the NHS...

There's a possible mini-rash appearing on my right wrist, but not in the usual place. Will keep an eye on it.

02/11/21 (2) First frost, antibodies

The first frost of the year on the flat roof at the back of the house this morning:

Bright and sunny at the front, with the maple doing its best:

Quite an improvement in the right neck and shoulder this morning - pretty much pain free and I can turn my head a bit to the right again. Nevertheless, I'll give this evening's boulles at Tower a miss. Maybe some gentle stuff at Ongar on Wednesday afternoon and the usual Thursday evening at Birchanger.

As it's well over two weeks since my Primary 3 COVID vaccination, about to do an antibody test. Fifty quid, but well worth it IMO whichever way the result goes.

Plenty of blood from just one finger prick this time, and I'm getting better at getting most of it into that rather narrow tube. Off to the post after lunch to send it on its way to the lab.

02/11/21 Misjudgement and massage gun

I badly misjudged my abilities yesterday. Played decent boules at Epping in the morning (three games, won two and lost one). Had lunch in the car on the way back (a Jamie Oliver egg,tomato, and salad cream sandwich from a petrol station and topped my diesel at the same time). Then felt quite energised at home and as it was a decently warm day I  decided to tackle a job on the big pond that I've been wanting to do for a long time - basically to break the big lily patch into two and haul one of them to the other end. It was far harder than I had anticipated even with the new extendable Gardena rake, and I badly overdid the exertion. Half an hour later I could barely move my head and neck to the right at all and it was very painful. At least it makes a change from having little movement to the left...

Some hours later after four Ibuprofen (and another two coming in an hour or so) on top of the usual pills,  a hot shower, and a plentiful application of the Universal Panacea (Deep Heat). it's starting to feel quite a bit better. There's even a chance of a decent sleep.

Now to get the massage gun out and give it a few minutes at minimum setting. I've already done that once and it seemed to help.