24/11/21 Trisomy of FGFR3

For some reason I don't understand my haematologist Dr.Ch has been reluctant to divulge the full details of the  genetic analysis of my myeloma (mutant plasma cells) from the bone marrow biopsy back in 2019. But I now have a letter confirming that the FISH (Fluorescent In-Situ Hybridisation, IIRC) revealed trisomy of the FGFR3 gene on the short arm of chromosome 4 in 50% of the plasma cells examined. More about this later, but it actually feels rather good to have a genetic basis of my disease confirmed.

Here's the relevant bit (4p16)on the left hand end:

and here's human chromosome 4 in all its glory:

23/11/21 Consultation, and the Suffolk game

Face-to-face consultation with Dr.Ch at Springfield yesterday morning. Pleasant conversation but not a whole lot new except that he's taking up my unofficial medical adviser's suggestion of adding a Haemoglobin A1c test to the bloods due to be taken on Thursday. Steroids such as dex can kick the blood glucose up into Type 2 diabetes territory and although I do occasional tests the best they can offer is a snapshot of that particular moment. The advantage of the new  test is that it gives an overall figure for the previous three months or so. Not that I have any real suspicion that I'm turning diabetic, but definitely best to keep an eye on the possibility for as long as I'm on the dex. And as far as I can see, that's not going to stop any time soon.

Went straight from Springfield to Hanbury Gardens for the afternoon session and after finishing off one game got introduced to a variant known as "the Suffolk game" for three players. It involves using two coches, both thrown together from the same hand, and you can play for whichever one you want. It's an interesting and very tactical variation, but not too easy to work out the correct order of play...

22/11/21 Next consultation

Face-to-face consultation with Dr.Ch at Springfield 11:00 - not much to talk about except the mini-rashes / vasculitis (again) and I'm expecting him to confirm the next Zometa on Thursday when I pick up the next bag of meds. They'll also take bloods so that will start off the whole nervous week again waiting for the results.

Decent boules at Ongar yesterday morning - played two, won one, lost one. Significantly colder and almost everyone wearing gloves. Mine kept the nasties away again. Will go to Epping tomorrow for the afternoon, after I'm finished at Springfield. Won't be able to do Tower on Tuesday evening because a Parish Council meeting clashes. I've decided it's time I went to a live one again - facemask, sit away from the others at the end of the table, insist on an open window, etc..

Nothing else new tonight, except this photo of a near-new moon taken through the landing window with double-glazing reflections and just a hint of the farm reservoir at the bottom. I think it looks better in b&w than in natural colour - what little of it there was pre-dawn:

21/11/21 COVID Pass

For the start, an interestingly quasi-palindromic date. It works if you read it but not if you take it character by character.

Did the pills this morning and managed to make a bit of a mess of them so had to re-do Saturday and Sunday later.

Not much except computer stuff in the morning but went out for a local walk to the post and back in the afternoon and that got me to my Activity Target. Did it with stick only,no walker. 1.32 miles, 3315 steps, and 193.6Kcals according to the GPS tracker in my pedometer app. For once I remembered to set it before I started.

It's good that my Primary 3 third vaccination now appears in my NHS record, and that I've received my "COVID Pass" NHS letter - even though that only includes the first two vaccinations!

Weight is likely to be up a bit in the morning because I had an attack of the "dex munchies" yesterday - constantly hungry and too many biscuits etc..Hope it's better today.

20/11/21 Autumn leaves

I had a domestic day yesterday - cleaned out the inside of the car, particularly in the boot where the walkers deposit lots of mud and general earthy rubbish. It now looks fine and will stay that way until the next time I go out...

Then swept up and disposed of the fallen leaves around the maple in the front garden - some into our compost and the rest into the green garden waste bin. We had a light(ish) lunch of cheese biscuits and a clementine and I didn't fall asleep too much in the afternoon. Fatigue has, I think, been a little bit better over the last few days.

Apologies for the window reflections, and you can also see the effect of the recent hedging people on that hedge. Looks a bit rough at the moment but will be fine once the new growth appears in the spring, and will be a lot easier to maintain in the future.

The right wrist mini-rash has 99% faded away now but a new one has appeared halfway up right forearm. About 3mm x 5mm, and still in the angry-looking red phase.

Nothing else new.

19/11/21 King's Head, Birchanger

Went to Ongar for some shopping and a shortish walk followed by lunch at the King's Head. They used to do a superb Scotch egg with prosciutto and sage which we both fancied but the menu has changed and now it's with chorizo and sundried tomato sauce. Not that either of us could taste any chorizo. The egg was medium hard, not oozy at all, and the outside was blackened - obviously too long in the fryer. We should have sent them back to try again, but who wants that extra wait while they do it?

Most of my cappuccino - delivered by a pleasant young waitress doing her best - arrived in the saucer rather than in the cup, but my dessert of apple and berry crumble was the best part of the meal. I ordered it with vanilla ice-cream rather than salted caramel. I just don't see the point of that -why add to my salt and sugar intake in return for no particular pleasure?

Good boules at Birchanger in the evening,even though my side lost a close match by just one point. Here's the GPS tracker of the evening from my pedometer app:

Everything else as normal - the mini-rash has nearly faded completely, and the right hand finger and thumb - both with splits that are neither fully formed or healed - are staying about the same thanks to the heated gloves. Nevertheless, hands and fingers are a bit dry and scaly so I think I'll do the massive hand cream and cotton gloves thing tonight.

No boules scheduled for later today. Instead, cleaning out the back of the car and tidying up fallen leaves in the garden - if I have the stamina for both. We'll see.

18/11/21 Shower, eggs

More about the shower: Once I was reasonably awake I was going through guarantees and orders and trying to find invisible product codes and serial numbers (all needed to summon up a Mira service man) not to mention hanging on the 'phone waiting for a human to answer, when Sue had a blast of inspiration downstairs. Strange noise from outside the bathroom window. Turned out that somebody (not me) had left the outside tap turned on. There's a hose from that to a distributor block, and one of the hoses connected to that had blown off with the unrelieved pressure, and therefore mains pressure water was flooding out, resulting in low pressure and flow in the house - low enough for the very sensible shower to turn its heating element off. All now restored to normal, but all that rushing around in the morning knocked me out until lunchtime. And that's the myeloma relevance - I just don't have the stamina to take those sorts of things in my stride any more.

Woke up in time to scramble a couple of eggs for lunch (and to poach one for Sue) before heading for Ongar for a little light practice. I was rubbish but it got me very close to my activity target. And I completely forgot that I should have been on a MyelomaUK Zoom meeting...