10/09/21 Birchanger boules, and bloods again

The day started grey and damp, but later went hot and very humid. I'm expecting thunderstorms before too long. I took Victor the Veloped along to the post box to send off my routine bowel cancer screening sample, and later discovered that I'd been seen by Ken and Barbara from Thorley / Birchanger Boules as they drove past. That walk was combined with a litter-pick from us along to the Four Wantz,doing my social conscience no end of good.

Boules at Birchanger in the evening. The temporary lights work but are far from ideal. We're hoping to have better permanent lighting installed by next week.

As for myeloma, I'll settle for those blood test results I reported in the previous post. It's hard to describe how great the sense of relief is when good ones come in.

09/09/21 (2) Blood test results

Last week's blood test results are in, emailed to me by the Springfield chemo nurses as usual. It's good news, PPs still undetectable and FLC numbers all OK. So all is set fair for the next month....

09/09/21 Second Anniversary

Two years today from the date on my diagnosis letter from Dr.Ko at Broomfield Hospital. Two years on, and if this had happened just a few decades ago, that's about all I might have got. Maybe another year if lucky. Myeloma treatment has advanced so much since those days...

Some things you just get used to, even if they remain a nuisance. Keeping the pills organised and taking them four times a day. Having endless needles stuck into you. Dex nights... Daily bowel management. Walking much slower and not so far, and always with a stick or a walker outside the house and garden. Except when playing boules, of course. Knowing that you've got a terminal disease and that this is only going to end one way. But there's a strange kind of comfort in knowing that, at least as long as there's a fair bit of time left first.

Overall, the worst thing is perhaps the continuous drain on your energy levels. Even though I'm in "complete immunological remission" as Dr.Ch puts it, I've still got the disease and I'm fighting it with my own resources as well as the lenalidomide and the dexamethasone, and fighting the unwanted effects of them as well, and either of those might go wrong at any time, opening the door for the myeloma to come back actively again. It's peace, but an uneasy peace. Hence the tiredness, fatigue, falling asleep too often, whatever you call it. It's the body conserving resources for the fight that matters. That's an obvious good thing, but also a damned nuisance when you'd rather use that energy for something else, like staying awake or getting out of a  chair and out for a walk..

Speaking of walks, yesterday's expedition was to the Thameside Nature Reserve - a splendidly reclaimed landfill site on the Thames Estuary a bit past Basildon and close to the huge "London Gateway" container port. Good walking there (plus lots of nature) and we'll definitely be back.The Visitor Centre is built somewhat in the style of the old Thames forts and gives fine views from the top (accessible by a spiral ramp around the outside) but the railings aren't conducive to good photography. Nevertheless:

UPDATE: I forgot to mention the painful foot problem. The left one cleared up quit quickly, but as when this has happened before the right ons gradually localised to just behind the base of the big toe. It was OK during the walk, but started up again during the drive home. However, now just about completely gone (09/09/21, 11:50)

08/09/21 (2) Health stats

Went to bed at 03:00 (having fallen asleep in my chair in the study for an hour and a half), woke up and got up at 07:00. SnoreLab reports a noisy night with a Snore Score of 100 - second worst so far. Overnight oxygen averaged 95% with 32 drops of >4%. BP half an hour after getting up was 108/72, well into the "ideal" zone. Left foot feels fine, right one's better but not by a lot, and there's still some ankle oedema showing which is not normal at this time in the morning. Perhaps I over-hydrated a bit yesterday... Temperature 36.7, and my ring is busy updating its firmware. As for the hearing aids, both were still in the charger but with their LEDs off. The app on my phone reported them both on 100%. I put them both in - still with no LEDs, I would expect flashing or continuous green on taking them out of the charger - and they are working fine. So the moral is to ignore the LEDs as far as possible!

Anyway, should be OK for an expedition later today as long as I'm not too ambitious with the walking.

08/09/21 Breakfast and Galleywood Common

Because of a new cleaner arriving mid-day (one of our usual pair is ill, but not with COVID) we wanted to avoid having lunch at home. So we went out for a big enough breakfast to last until the evening. The nearest place - the Axe & Compasses - turned out to be closed for unknown reasons except, perhaps, that they are advertising for a breakfast chef. We ended up at Bretts and I had a "small" Bistro Breakfast with added black pudding. Very good it was too. We also got some nice veggies from the deli there, and I used one of their leeks to go with sea bass in the evening. Steamed,with added herbs from the garden.

After that breakfast we went to Galleywood Common on the south side of Chelmsford. Never been there before but it has some fine walks and will definitely go on our re-visit list.

Now you know why it's called GalleyWOOD.

I was fine during the walk but after we got home I developed acute pain in both feet, but mainly the right one. It's on the top, so not plantar fasciitis or anything of that kind. I've had this before and it usually clears up quickly. The left foot was fine by about 20:30, but the right one is still bad at 00:40. I don't think this is myeloma-related, except perhaps that the MM increases susceptibility to a weakness that I have already.

Later today we plan on going to the new Thameside Nature  Reserve the other side of Basildon. I'm hoping the foot will be OK.

Boules at Tower was OK last night. For the first time I used Walter Walker to make sure I had somewhere to sit down and take the weight off the bad foot. As usual, played a few really good throws and a load of not-so-good as well.

A bit of a breakthrough in the hearing aid recharging issue, I've been using the Phonak app on my phone which Bluetooths to the hearing aids, and it shows that the aids are charging whenever in the charger, whatever the multi-colour LEDs say. So I've decided to ignore them. The app says left  99% and right 86%, even though both LEDs are off.

06/09/21 (2) Water, and balance

Another very hot day in this very welcome Indian summer, and it became almost unbearable in the shade-less old horse exercise yard at Hanbury Gardens (Epping Petanque). Eventually had to take a short break in the nearest area of shade.I had a bottle of water in the car but couldn't find it. Luckily I had half a bottle of mango juice as well. Got home, changed walkers in the car in preparation for tomorrow's planned expedition, and there was the water bottle buried underneath. I really could have used that earlier. Bowel management worked well and all OK for the morning. And the afternoon, come to that.

Played two games. Won the first one, and I got the totally unofficial "Star Player" award. Lost the second by 11 - 13. Both good long and very close games with interesting tactics all round. Last time I played on the exercise yard I couldn't get my lengths right at all - either overshooting terribly or stopping yards short. This time I was close to spot-on with at least half my balls, and the others not far away. I have no idea why the difference, unless it's something to do with a new and unorthodox grip I'm experimenting with.

This photo is of the Hanbury Club building, which is usually open. I understand there's a fine interior with lots of beams etc.. I was hoping to get some interior photos today, but by the time the games finished the door had been locked. Next week, perhaps.

I've had a couple of balance issues over the last week or two. Several times it's felt as if I was going to fall backwards - particularly welcome when climbing the stairs. I've had spurts of balance problems before - never particularly serious but one of the things that led to the Parkinson's business some months ago. So far they've never lasted for more than a couple of weeks. Something for the next consultation with Dr.Ch at the end of the month as it may be a result of the meds I'm taking.

06/09/21 (2) Morning

Knowing I need an early breakfast to be in time to leave for Hanbury Gardens (Epping Boules) I woke up at about 05:00 and couldn't get back to sleep. So it's a much earlier start than I expected or need. It was of course a dex night. I used to rely on multiple alarm clocks and still often slept through them all, now I'm usually awake before my Alexa alarm or my phone goes off, even without the dex.. Who needs them now? All part of getting older I suppose. Anyway, the lack of sleep doesn't bother me unless it repeats over several days,and five hours a night seems enough for me most of the time. I've been a bit like ike that since long before myeloma - it probably dates back to retirement  but I think the cancer has made it worse. Alien as it may be to my night owl nature (went to bed 02:15 last night) getting up early does give me some uninterrupted time to get on with stuff on the computer and to take a photo out of the back of the house. It's autumn now and the seasons are behaving themselves - misty mornings are back:

Temp today 36.6, BP 124 / 80 and pulse 72. I'm happy with all of that. Slightly less happy with the overnight oxygen saturation gadget because for the second time the "one size fits all" silicone band failed and it came off my finger overnight. I put it on first finger (left hand) between first and second knuckles (counting from fingertip towards hand) Could go one knuckle further but very tight there and feels uncomfortable. Little finger will go all the way - maybe I'll give that a try tonight.