11/02/21 Early diagnosis

Back to myeloma - and not before time, the weary reader might say...

My main interest outside my personal experience of the disease is in early diagnosis and GP education about myeloma. I've seen a figure somewhere that the average GP sees only five myeloma cases in a full career so it's hardly surprising that it's not something on te tops of their minds. This luckily matches the current main concern of the Advocacy Panel..

I made a start by posting on the Myeloma UK Support group on Facebook and got a very gratifying return of support and tales of diagnosis - mostly of long delays and a few good ones for balance and contrast.

You never know what's coming - last night I slept right through from about 02:00 to 08:15 despite the dex. So I got no further through The Big Bang Theory.

Things went slightly off routine after breakfast this morning - I had to make the coffees because Sue was heading out to the dentist - and I forgot to take my breakfast pills from the red (cancer) box. So today's 10mg of dex went in after the evening meal instead. I have no idea how that may affect tonight's sleep. Maybe I'll get through a couple of BBTs after all...

The laughs have helped, now and again.

10/02/21 Advocacy Partner Panel, bike machine, wearable tech

Woke up with both hands swollen a bit - the rings felt too tight and skin redder than usual. I take that as an indicator of what's left of my immune system trying to deal with all the finger splits and etc.. All back to normal within half an hour or so. 

Bright sunny day but still freezing within a degree or so, I'm staying inside to admire it through the windows and give the splits a chance to heal..

As a result of this morning's call on Microsoft Teams, I'm now a member of Myeloma UK's Advocacy Partner Panel (APP), see here for details. Never used Teams before - I downloaded it a few days ago and it worked perfectly first time.

21:30 and my Alexa says it's down to minus 4C outside and going to get colder:

I shall be staying in until it warms up. The finger splits are entirely bad enough already.

I've got the under-desk bike machine out again. Boring but it does get the activity numbers up. Very slowly...

My daily activity target is 400. Made it to 406 just before midnight, so that compensates for no walk.

It also tells me that my "walking equivalency" - which includes all kinds of movement plus basal metabolism was 6.7km (4.2 miles) equivalent to 8005 steps. One may wonder about the reasoning behind these figures, but as long as the thing is consistent from one day to the next - and the "Trends suggest that it is - then I'm happy to take them as "arbitrary" relative numbers rather than absolute values. Here's my Trend graph for Activity > Steps:

It's a dex night tonight, which is likely to mean a rather early morning, You might think that would make a mess of the Sleep data, but the good thing about this bit of wearable tech is that it doesn't just judge everything against a standardised set of "one size fits all" numbers. It has enough AI to learn your individual patterns and use them as its baselines. It hasn't quite come to terms with my usual bedtime of around 02:00, but it's getting there.

Oh well, another early morning coming, and no test cricket from India to watch. Back to The Big Bang Theory, I suppose. Will it ever get to the end? (Another two and a bit series to go, I think.)

Now -5C outside. That's as cold as we've been for quite a few years. I'll take no chances with these finger splits, especially as I'm on the dex phase of the week.

09/02/21 Thaw?

A fraction less cold today, but -1 or thereabouts now (22:30). Fingers and hands in a bad way after clearing snow off the cars this morning and doing the bins this evening. Gloves are all very well but not enough. I've cancelled tomorrows Specsavers appointment because they adjusted my glasses while I was in today, so I have no reason to leave the house and I don't intend to. I shall have a finger-healing day instead.

Also expecting an early (10:00am, that's early for me) Microsoft Teams call from MyelomaUK's Advocacy Panel. I've never used Teams, so that might be interesting. Installed it a few days ago, but that's as far as I've got. I have a phone number to call if problems, might need it...

08/02/21 (3) February blood test results

They're in, and the Paraproteins are still at "undetectable". As for Free Light Chains, two of the three numbers are in their normal ranges, the other is just a fraction below, which I suppose is better than being a fraction above. COVID test negative again as well.

So that's all good news, and it's stopped snowing as well. But still -2C out there, so I'm staying inside!

No it hasn't. I've just seen a few little flakes drift past the window...

08/02/21 (2) Herons and sheep

 Temperature still below zero, so cold our heron has frozen solid...

(Apologies to anyone who has already seen that joke on Facebook)

On the advice of my sister, set out to buy some sheepskin-lined mittens from morlandsheepskin.co.uk but they've got a production delay of five weeks so that's probably best left until next winter. Have ordered a new pair of gloves from them instead:

08/02/21 Coldfinger...

Finger splits much better today, and because of freezing temperatures all day I never got outside at all. There is a connection! Dex, I'm sure, makes them worse and take even longer to heal but the underlying truths are the same as before - it's cold weather that is the primary cause.

On the Facebook Myeloma UK group there's a consultant quoted as saying that Myeloma is one of the better cancers to have. To a point, I'm inclined to agree and I've said the same thing myself. As long as you're diagnosed reasonably early - and from that same group I'm very aware that some people aren't - then you're likely to have several years of reasonable health before things start getting bad. It's not like being told out of the blue that you've got something like pancreatic or bladder cancer and will in all probability be dead in six months, most of them in a bad way. With Myeloma you do have - probably - the precious gift of time before the crunch comes. And it will, eventually, to all of us, cancer or not.

Personally, so far, there are annoyances - the constipation management, the infernal finger splits, the exposed jawbone, the poor walking and worse balance - but none of those really make an intolerable impact on quality of life. They're nuisances, and not a lot more. Rather like the endless round of hospital appointments, blood tests, another bag of pills to take... They can all be coped with. The worst thing, for me, is the drop in energy and stamina. It's hard to start things and harder to keep them going, and that applies as much to the trivial level of getting out of a chair as it does to bigger things. Much easier to fall asleep for a while.  But enough of that - time for bed...

07/02/21 (2) Harder

Snow finally (15:30) coming down a bit harder but with temperature still around zero some of it's more like hail than snow. I think we might have a decent fall overnight.

Hope not too bad because I have to drive into Chelmsford  on Tuesday to sort out the problem with pairing my hearing aids with my new phone, and again on Wednesday for adjustments to my new glasses, which tend to slip downwards and fall off when I'm looking down. It's not the snow that worries me, or even the ice that may follow, it's the effect of the cold on my fingertips. D*mn dex!!