31/03/21 I can't think of a title for this one

An even warmer day but I didn't get to take much advantage of it with one thing and another followed by a visit to the GP surgery for my three-monthly B1 injection. That took longer than it should have done because the receptionist who let me in at the door and said she'd sign me in actually didn't. So that was half an hour waiting that needn't have happened.

On a better note for the surgery, we both had texts yesterday morning asking us to make second COVID injection appointments for next week. I phoned, and the receptionist said "Do you want this week?". So we're both booked in tomorrow afternoon for Pfizer Part II. The daily backgammon hour has been adjusted accordingly.

The thumb split has improved a little today, but perhaps the best news is that no others have appeared and the ones that were nearly gone are now almost completely gone. The oedema is a bit better as well, which is a bit odd as I didn't take a diuretic yesterday.

No senna again last night. I expect to start it again tonight.

Despite not getting a walk in, I hit my targets again. Just one day to go to finish the Mucles4Myeloma "challenge", and we're aiming for a new walk that Sue discovered in Ongar a few days ago.

30/03/21 An offer of help

A very much warmer day yesterday - one might even say hotter (19C) - and the winds of the last few days have dropped away. Went for my after-lunch walk early afternoon (I've been experimenting with American methods for "scrambled eggs") and didn't use any gloves. Hoping that some good honest sunshine and ultra-violet rays would have a healing effect on the finger splits. And in fact, it's only the one on the end of my right thumb that's causing much of a problem now. My unofficial medical adviser thinks it's all a consequence of the eighteen months of steroids (dex).

The walk was one I haven't done since last summer, along the A1060 to Ongar Road then right towards (and past) Shorts Farm. On the way back I decided to stop for a few minutes and sit on a convenient fallen tree trunk. A rather nice white Audi drove past. A few minutes later it came back, and the driver lowered her window to ask whether I was alright. I said yes, I'm fine, just taking a break and enjoying the sunshine. She (with what was presumably her husband in the passenger seat) then drove on in the direction they had originally come from. I got my walker organised and set off along the road towards home. After a hundred yards or so the same car passed me and we exchanged waves. Several conclusions follow:

There are still good people around. They saw me, thought I might be in need of some help, turned round and came back to check. Then drove on, turned again, and went back to their original journey. Whoever those two are, I thank them for their concern and their readiness to do something about it.

Not all Audi drivers are complete b*st*r*s. Some of them are, but nothing like as many as BMW drivers.

I may look rather worse than I think...

This was taken during the walk:

On the old favourite topic of constipation, things almost went into reverse in the morning. I'm giving myself a couple of days off the Senna.

My watch behaved strangely during the walk, It stayed stuck on 700 or so (the amount I did around the house before going out), but leapt up to several thousand after I got home. Google Fit and Samsung Health both record several thousands, but differ by a thousand or so. I'm happy as long as Muscles4Myeloma is happy that I've done enough for the day.

29/03/21 Finger splits are back

A couple of days ago I thought I'd seen the last of the infernal finger splits for this year at least. But they're back with a vengeance. Finger tips, sides, knuckles, back of hand. Anywhere except the palms, you name it and I've got a split there. We've had a couple of colder days and I've only been outside the bare minimum without the sheepskin gloves on, but still they come. And I'm not even on skin-thinning dex at the moment. Nothing seems to make much difference to them, not even the trusty Vaseline or the new Calendula. They heal in their own time, and then some more come along to replace them. Maybe when warmer weather arrives properly I'll be able to abolish them at least until next winter.

Skin on the backs of my hands less papery than yesterday, but that may be because they're a bit puffed up with the oedema. Certainly hard to get rings off this evening. Nothing in the diary for today, so I'll take a Furosemide first thing.

Short walk yesterday, just up to Pepper's Green Lane and back. But enough to meet my targets, and my watch delivered a reasonable number of steps.

27/03/21 Oedema, Danbury, clocks

The oedema is now about 75% back to where it was first time around, and the policy of taking  Furosemide whenever it seems particularly bad isn't having much impact. I think I'm going to put myself onto alternate days, or maybe three days a week, for a while. It worked last time. The problem is that the inevitable consequences of diuretics can interfere with doing anything that involves leaving the house for quite a few hours. Some ingenuity in diary planning is required.

Also noticed that the skin on the backs of my hands is particularly thin and papery at the moment

Today's hour of permitted exercise (loosely interpreted) was in Danbury Country Park, in a village a few miles the other side of Chelmsford. Several years since we've been there:

OK, it looks pretty much like all the others... And it'll look better when there are a few more leaves on the trees.

My watch half-behaved itself. We were well into the walk before it jumped from the low hundreds into the several thousands, so it didn't recognise my movement as "walking" until I'd been going for quite some time. I'm still confused by Google Fit (supposed to sync with my ring) and Samsung Health (supposed to sync with my phone), both of which record zero steps for yesterday. Despite that, MoveSpring gives me  few thousand and tells me that I've met 20 out of 15 goals for Muscles4Myeloma. Oh well, as long as it says I've met all my goals I suppose I should be happy with that.

Still so pleased with the last blood test results that I'm going to include the most important part:

and that's it for tonight, when the clocks go backwards. Or possibly forwards. I could never get my head around it. Anyway, I think we've got the few manual clocks left in this house the wrong way round.

Will sort that out later...

26/03/21 Blood test results

All good. Paraproteins still undetectable, everything else either in normal range or only slightly outside. That's after a fortnight off both len and dex. If I were to say I'm relieved that would be a huge understatement. COVID test also negative again.

25/03/21 First Birthday

 

Today is the first birthday of The Transplant That Never Was. As things have turned out, I'm very pleased that I never had it. I'm still in remission (and hoping the the blood test results due tomorrow won't change that)  and new drugs and combinations come along all the time. The transplant option will still be there for a couple of years or so, but  there's no doubt that it is no longer the "gold standard" treatment that it once was. Anyway, I've just lost a year of my life to COVID, I don't want to lose another one to the recovery from transplant.

Some good news from an unexpected direction. When I got my first smartwatch several years ago I was a little annoyed to find that it failed to count the steps taken behind a lawnmower - because, I assume, there is no swinging of the arm, just a smooth forward motion. Later, and with a newer watch, the same thing applied to using a walker - it just didn't register the steps. That meant doing complicated work-arounds with my wearable smart ring which calculates "step equivalents" from a combination of GPS, height and stride length data, and whatever it can get from blood flow up one finger as measured by the three sensors on its inner surface. It's supposed to send its results to Google Fit and Samsung Health, and one of them passes results on to another app for the Muscles4Myeloma "challenge".For a reason I haven't fathomed, that works perfectly sometimes, not at all at other times, or gives obviously absurd results occasionally. But now...

My watch installed some new software for itself yesterday, and when I looked expecting the usual low count for the day, I found a much more realistic number well into the thousands. It seems that it is now capable of registering steps behind a walker (or even a lawnmower?) That's progress for you!

For our walk today we had the first trip of the new season to Marks Hall Arboretum:

And a rare thing, a selfie of your author:

24/03/21 Zoom

I started the day with a Zoom meeting of Myeloma UK's Advocacy Panel - 19 members (including me) plus a few from Myeloma UK's staff. It started at 09:30 and was due to end at 12:30. In fact it over-ran quite a bit. We had two short breaks, but it was an intense morning as there was a huge amount of information to absorb and process.

Did the triangle in the afternoon, so all targets met.

Last Friday's blood results should be in tomorrow. I'm even more nervous than usual this time because these will be the first results since my "holiday" from Len & Dex.

There should be more to write about but I think my brain has seized up after that long Zoom session in the morning.