22/09/21 Zzzzzz...

I didn't post last night - fell asleep first. This getting to be quite a problem. WIll try again tonight, if I can stay awake long enough.

21/09/21 (2) Sleep problems

I've always been on the nocturnal side and for many years it's been my habit to stay up after midnight (when I often feel at my sharpest for the whole day), catch up on recorded TV, do computer stuff, and etc., and get to bed somewhere between 02:00 and 02:30. Recently I've started falling asleep in my study chair at 01:00 to 01:30 and waking up again the wrong side of 03:00. As I'm also tending to wake up earlier than before, the result is not enough hours of decent sleep, even though I don't need many. I've been setting two alarms in my study for just before 02:00 (Alexa and phone) but I just sleep through them... Not at all sure what the answer to this is. Long experience tells me that if I try going to bed earlier I just don't sleep, so that wouldn't help. 

21/09/21 Sleep and stamina

The third consecutive boules-related early start yesterday, which I think is perhaps one too many. I played badly at Epping and made little contribution to my team's defeat by one match to two. At least the various road closures, diversions, and etc. all seem to have gone now, which takes ten minutes off the travel time to Hanbury Gardens. 

I need to remember that even though I am in full remission and etc. my stamina is still a long way below what it used to be pre-myeloma, as is my general speed of doing things. I may not get many hours of restorative sleep a night (especially when two of the recent three were dex nights) so I need the daytime snoozes and plenty of "recovery time" during the day.

Late this morning Epping  are sending some people over to Ongar for some practice on our "tricky" piste before the next and final leg of the Epping-Ongar Challenge. I don't anticipate being selected for either side (Ongar would be my priority) but I may drop in after 11:00 (no early start!) just for some neutral spectating. And later (20:00) I'll be off to Tower Petanque and hoping that I'll be playing a bit better than I did yesterday.

Bowel management worked OK again, it' s a long  time since I've needed a Fybogel or a Laxido, I seem to do OK now with a single nightly senna, varying it with a night off and a double dose as needed. 

The micro-proto-rash on my right wrist has now faded completely away. No new ones have appeared, at least not on bits of me that I can see. Ankle oedema still there but not at too bad a level. Might be OK for a Furosemide on Wednesday, or later today if the weather is bad enough to discourage an Ongar trip in the morning.

With that I'll sign off for the night. Now going to Myeloma UK Support (facebook) to see if we have any new members to admit.

20/09/21 Ongar Finals Day and end of life

Nothing new on the myeloma front, except that Dr.Ch asked for photos of the latest micro-proto-rash on my right wrist,which is now fading nicely as the others did, so I sent him a couple. He thinks it may be worth a word with a dermatologist.

Boules at Ongar yesterday morning - Finals Day in the club singles and doubles competitions. Brian and I won our game to avoid the wooden spoon in the doubles - I had a really good first few ends and we got into a good lead, then the opposition clawed their way back into the game and we were stuck on 12 points for several games before getting the final point to win 13-10.

Secretary Carolyn with her shattered kneecap and leg in a brace won the Singles after an exhibition quality match with another good player:

Several rather depressing near-end-of-life stories on the Facebook group yesterday. Hard to find the words to reply to them, and a reminder of what may lie in store for me as far down the line as I can make it. When I get close to there I shall take the one-way ticket to Switzerland option very seriously, if we haven't got "assisted dying" sorted out in the UK by then, and I hope we will. I want to keep control for as long as I can, but when the end of that is in sight - well, other considerations will take over. That's a happy point to finish on...

Hearing aid update: both have behaved perfectly this time - showing solid green LEDs and reading 100% on the app. Hope they stay that way for the rest of the night.

19/09/21 (2) Aids & dex

More hearing aid frustration. The left one charged OK overnight but the right one wouldn't connect at first so I changed its wax guard and put it back in the charger.and it came up at just1%. Now appears to be charging OK (4%) but I'll have to go out to Ongar with just one aid. Not ideal. By the time I got back from Ongar it was showing solid green and 100% charge. Both aids now in their corresponding ears and working fine. No idea what's going to happen tonight...

Last night was a dex night (just 10mg) and tonight will be another. Definitely much less effect on sleep timings than it had at first when I was double the dose.

Dr.Ch has asked me to send a photo of the most recent mini-proto-rash. He suggests having a word with a dermatologist. He's already got photos of the earlier ones.

Must go and prep a baked potato - 10 mins in microwave then 50 mins or so in air fryer works very well.

19/09/21 Biscuits, Birchanger, Bowels

It's the  first dex night of the week - anything might happen. I need to be up reasonably early for Ongar Boules at 10:00 - Brian and I have a match scheduled for 11:15 but I'd like to get there earlier in time for a practice game first. It's also the end-of-season party (if the rain holds off)and I'ver made my usual Cheesy Parmesan Biscuits.

Sue and I were both at Birchanger for the BD Plate competition, plus free bar and buffet lunch, many thanks to the sponsors from Tenerife. I lost both of my games - one to the club Chairman and the other to the wife of a man who played for England back in 1980! She must have played a lot of petanque over all those years, which might explain why she was a good deal better than I thought she would be. Only a one point win, but that's enough. Having to go into these games cold without any warm-up games was a real problem - I don't usually get going until the second game. But of course it was the same for everyone. Had an interesting chat with her husband later, and a more frustrating one with the other ex-England international who seemed incapable of understanding my point abut why so many people line up a throw with the hand under the ball and then switch to overhand during the delivery swing. Seems to me that you should set up and aim with exactly the same arm and hand position that you use to throw - especially for people like me with over-extended elbows.

Here's yours truly (aka "Ian the Hat" in several clubs) having a deep tactical thought about where this boule is going:

and a general shot of the scene:

I'm about to deliver. My opponent is next to me on the left, then the very french Herve having a sit-down.

Bowel management worked well, and no senna last night in preparation for Ongar in the morning.

Ankle oedema is still there on the left but very much reduced on the right. The small proto-rash on my right wrist is starting to fade, as is one on my right elbow. Treating with antiseptic cream as before.

Had a voicemail from Dr.Ch's secretary with an appointment for next consultation on Monday 27th at 10:00. but she was very quiet for some reason and even streaming to my hearing aids at maximum volume I couldn't tell whether it was face-to-face (as agreed last time) or 'phone again. I've emailed for clarification but as she only works limited hours I'll probably have to call Springfield Hospital to find out whether I have a face-to-face appointment or not. Either way it's going to mean missing a Monday morning at Epping (Hanbury Gardens) although I might turn up for an afternoon game.

No pre-bisphosphonate dental check this week as those are eight-weekly. I'm assuming I'll be OK for another Zometa drip this Friday.

18/08/21 Eggs, boules, Ronapreve

First, the good news. The result of my bowel cancer screening came in - no need for further investigation at this time.That's a relief, because like any cancer patient I'm at increased risk of secondary cancer(s). Every X-ray, every CT, just about every pill and drip carries a slight extra risk, and one cancer at a time is quite enough for me!

Returned the sleep apnea monitor to Broomfield just before 10:00 as requested. I didn't sleep very well with it but got two reasonably long spess. The main problem was the "nasal canula" - the two plastic tubes that go up your nostrils. There's nothing to keep them in place,so they kept falling out. If I ever have to do this again, I'll equip myself with a roll of tape to secure the tubes rather better. My sleep wasn't helped either by my cat Blue, who came on the bed at least twice during the  night demanding attention. She NEVER comes up during the night - sometimes for a few minutes when I go to bed or when I wake in the morning - but never between. Just another example of the curious "intelligence" or perception or whatever you call it of cats - she could tell I wasn't sleeping normally and wanted to help in her way...

I just hope they can recover enough data off the monitor to make a diagnosis one way or the other.  And if it is what I think, getting used to a CPAP machine will be a small price to pay for not falling asleep all the time. And Sue will be pleased. Very pleased.

After returning the monitor we went to The Hare for breakfast - I had my usual Eggs Benedict with a Garnett's sausage. It was fine except that the base of the lower muffins was very hard to cut. I was tempted to ask the waiter for a steak knife, or possibly a hacksaw.

We're very lucky to get lots of fresh eggs from our neighbour's chickens. They aren't always as large as I might like, but the taste is superb! I think I'll be doing some omelettes (with cheese, mushrooms, and chives from the garden) for dinner later.

After breakfast I went to Ongar for what was left of the U3A boules session, but they were all gone when I arrived. I know a couple of other regulars were also unlikely to make it, so I suspect the others may have gone to the King's Head for coffee earlier than usual. So I did some solo practice until some other Ongar people turned up and we did some more practice sharing a few ideas, then played a friendly. Sorry to say that my side lost. Twice. By the end of that I could feel my game going off so I called a halt and went home, not least because I have a lot of petanque to play over the next few days and want to keep reasonably fresh. But more about all that later.

Some more good news from The Daily Mail, if that can be seen as a trusted source:

"The life-saving antibody cocktail drug given to Donald Trump last year will be given to vulnerable NHS patients from next week.   

Last month, Health Secretary Sajid Javid heralded Ronapreve as the first treatment designed specifically for Covid-19 to receive regulatory approval in the UK.

The Department for Health and Social Care said on Friday that it had the potential to benefit thousands of patients, with its rollout initially targeted at those who have not mounted an antibody response against Covid-19."

If that can be taken at face value (and I haven't yet had time to dig any further) it would be halfway to my personal threshold of two effective treatments. Let's hope the DM hasn't gone of at half-cock yet again.

Did Pill Organisation yesterday evening because no time for it in the morning - we'll be heading off to Birchanger for the BD Plate competition combined with food, a free bar, and plenty of social chat etc.. Pleased that Sue is coming as well. Might even get her to play a game... Then on Sunday we have an end-of-season party along with finals day for the club competition - Brian and I have one match to play - and I'll make Cheesy Parmesan Biscuits when we get home from Birchanger. After all that I may well give Epping a miss on Monday morning - I'll be pretty much bouled-out by then.

Everything else is ticking over nicely as usual. Nothing particular to add.

Service failure with our new fibre broadband  - sounds as if the problem is with power supply. I've switched back to BTinternet ADSL, which is fast enough for most purposes.