08/08/21 Pills, Olympics

Heavy rain all yesterday morning, until it brightened up in the early afternoon. I did the Pill Organisation Thing and then we took a very adventurous trip to the Marks & Spencer Food Hall on the Clock Tower retail park, and had lunch there (ham and cheese toastie on sourdough (shared, and very good), and two of their excellent cappuccinos). Then back home to watch some Olympics or, in my case, to fall asleep for an hour or two. I'm developing a theory that it isn't so much the amount of exercise that causes this (it was little enough yesterday), but simply the act of stopping. Why that should be, I have no idea.

It's the Writtle Jazz Festival later, and the forecast is for more of the same - rain in the morning, clearing later. So it shouldn't be too bad. I hope. Anyway, more about that in tomorrow's post.

A red patch has appeared on my right shin, a little smaller than a pound coin. Treating it with antiseptic cream at the moment, and wondering whether it's the start of one of the rashes that are common side-effects of both dexamethasone and lenalidomide. Will keep an eye on it.

06/08/21 Dex and pizza at Springfield

The morning showers stayed away long enough for a short boules session at Ongar with the Rodings U3A before I had to leave for my Springfield appointment. All OK there (bloods and Zometa drip) but they seem to take longer to organise the meds every time. They've got a new cancer pharmacist, which may not help to speed things up. And of course we had to do the ritual Forgetting of the Dexamethasone, which happens almost every month now.

I was offered a cup of tea to get me through the 45 minutes of Zometa drip, which I accepted, and then came the offer of lunch. Usually I go for the egg mayo sandwiches (if anything at all) but this time I was tempted by the vegetable pizza. When it eventually arrived it was a small one - four or five inch diameter and very tasty - but I hadn't expected it to be perched on top of a large pile of chips... Healthy eating?

Drove back to Ongar for a bit more practice. Only one other player there, the others probably being put off by the rain. Then home for tea and the weekly Tessco delivery.

Pill Organisation Day again later. Tempus fugit.

Nothing in either of our diaries for Saturday, so we'll probably go somewhere for lunch. It all depends on the weather.

05/08/21 Postponed appointment, and Blackmore

Yesterday started with an email from Springfield Chemotherapy "asking" if they could move my appointment for bloods, Zometa, and meds forward to (later) today. That's mildly inconvenient, but what can you do? I said OK. It'll mess up my boules with the Rodings U3A in the morning, but with the weather the way it is that'll probably be rained off anyway.

Staying on that subject we had heavy rain yesterday evening but I decided to take a chance and head for Birchanger anyway for the usual Thursday evening club session. Rain all the way, but it cleared right at the end and stopped as I parked outside the Sports & Social Club. I waited half an hour but nobody else turned up so I came back home. Through even more rain...

Earlier in the day we had to go out to buy more fish food, and that took us in the direction of the village of Blackmore which we went to several times during e-bike days but haven't been back to for several years.

This is at the back of one of the two tea rooms in the village:

The church with its unusual wooden spire:

The village pond:

with resident ducks:

And the village sign on the green:

Everything else as normal yesterday. Oedema not perfect but OK, bowels OK, BP in the morning was 115/67, pulse 56. All good. The only annoyance is that I shall now be starting  Consolidation Cycle #16 a day late - Friday rather than Thursday - and that may mean having to wait over another weekend to get the full bloods results.

A better night's sleep yesterday - something over four and a half hours, which seems to be enough for me - unless the sleep apnea test (when it happens) says something different.

04/08/21 (2) Multiple Frustrations.

Well, my first game in the Essex Invitation League might have gone better if the opposition had actually turned up on their own piste. Apparently one of their players was injured and they sent a "Cancel" message out but it never reached us. So we played some friendly doubles instead and then headed for home. Interesting, if not very attractive piste with a thicker layer of gravel than usual making it hard to judge the length of roll.

I had a Furosemide first thing and it worked well, producing Niagara-like flows within half an hour or so. Spent most of the day waiting for a call from the burglar alarm man saying what time he was coming, and when we finally ran out of patience and 'phoned their office we found that the appointment hadn't been "confirmed" and because of staff shortages they wouldn't be able to get to us until Friday. So a rather frustrating day, but at least the bowel management plan is still working.

Had a poor dex night's sleep - my ring recording a little under three hours. I kept waking up thinking I had to be up in case the burglar alarm man arrived early... No dex tonight,so hoping for rather better.

Back to Springfield mid-day tomorrow for bloods, more Zometa, next month's meds, and probably another "professional" COVID test. Then backgammon and off to Birchanger for more friendly boules. Going to be a busy day.

04/08/21 Breakfast, Boules, and Furosemide

Yesterday we went for breakfast at MT2 (the new place on our side of Chelmsford). I had Eggs Benedict augmented by bits from Sue's Full English - half a slice of black pudding, half a tomato, a whole local Garnetts sausage, one rasher of bacon, and a few mushrooms. That's my processed meat allowance for the week gone... We went for a walk in Tower Gardens to walk some of that off

No lunch after that, although I had a banana for my potassium levels.

Good boules at Tower yesterday evening. The first doubles match I played went to 12 all, but the opposition just got the final game. The second one was a good win 13-8, and I hope that will set me up well for the match (Thorley v Bocking) I'm playing tomorrow. I once made a comment that boules was tactically a fairly simple game compared with, for instance, crown green bowls. I've learned a lot since then, and I could not have been more wrong! Comment withdrawn.

The ankle oedema is back again, and I'll definitely take a Furosemide before breakfast. I've got all day until leaving for the match at 17:00 so that should be enough for the effects to wear off.

The new cleaners failed to arrive as planned. It turns out they've been "pinged" by the NHS Covid app and  are in self-isolation. Now waiting for the burglar alarm man and some tree surgeons coming to do some estimates over the next week or so.

Pill Organisation. I have a set of one-day pill boxes which I use when we go out for a meal, as the first three lots are after breakfast, after lunch, and after dinner. That's fine as long as I remember to load the day's box up before we leave the house. It worked for yesterday's breakfast at MT2. But after we got home I had just a banana at mid-day and of course forgot my lunch-time pills. No big deal as I just added them on to the dinner pills - nothing time-critical in there. Even twenty-three months into this it's still easy to get things wrong!

03/08/21 Face to face consultation

I had my face-to-face with haematologist Dr.Ch yesterday morning. Not, to be honest, very productive. He said I was looking well and I said I felt fine apart from the fatigue/tiredness and the fight that I know is going on inside even if it doesn't show on the surface. He has nothing to suggest for that apart from the sleep apnea investigation, and who knows how long that will take under the NHS these days?

I corrected a minor error in his (rather late) GP letter - my COVID antibody test result was >0.8 rather than >0.3. That's a memory failure on my part, I gave him the wrong number.

I asked about the blood film results on the last set of bloods:

"Clinician Film Request Comment: Mild monocystosis. Atypical lymphocytes seen. Red cells show macrocytosis"

I've not had a report like that before, although Dr.Ch assures me they ask for a visual check on a blood smear every time.

In plain English, I've got a few more monocytes than usual. Not a problem. And some unusual lymphocytes, which might develop into a problem. And some larger than usual red cells (I still prefer "red corpuscles" because when mature they have no nucleus and therefore aren't true cells). This got us into an in-depth discussion of bone marrow and red cell production, and I didn't follow all of it well enough to re-create here. Basically, not a problem but needs keeping an eye on.

That's about it. Going out for breakfast later, followed by going somewhere presently unknown to walk at least some of it off. Boules at Tower (under the floodlights) in the evening, which will be my last chance for some decent practice before the match for Thorley / Birchanger tomorrow.

Surprisingly few decent images of human blood smears appear on a quick search.This one will have to do.

02/08/21 Morris Dancers

Still nothing much to write about myeloma. There's a piece in the Mail on Sunday saying that NICE have approved Lenalidomide as a first-line treatment. It's poorly written (surprise!) and shows little understanding of the issues, and I've found no confirmation elsewhere, including MyelomaUK. We know this is coming sooner or later, but I fear the MoS has jumped the gun a bit. There's also a newspaper report on a variety of up-and-coming drugs that aren't exactly cures for COVID-19 but dramatically reduce the severity of an infection. Dexamethasone is one of the ones quoted... If so, I hope 20mg a week is enough!

I hope to have more after the meeting with my haematologist later today.

Played boules at Ongar yesterday morning (not at my best, especially in the second game) and there was a Sunday Market in the car park. It included these Morris Dancers. Strange to see them in face-masks, but I suppose even traditional arts must move with the times...

Click the link below to see them on YouTube in a separate window:

Morris Dancers at Ongar