01/11/21 Stairs, paces, Pill Organisation

Stairs: did it yesterday night - straight up all thirteen, alternate feet, no handrail grabs, no stopping to re-balance. Pleased about that!

Yesterday's Ongar boules cancelled because of heavy rain. I took advantage of a break in the weather for the walk around Brickhouse Farm, just got back before the heavens opened again.. I've got a new pedometer app on my phone which picks up steps while pushing a walker, unlike the step counters built in to my phone and watch. So now I know for sure that I've done 3240 paces and 1.35 miles and burned 190 Kcal since mid-afternoon. Which works out to 0.73m per pace.

Pill Organisation has been a bit disorganised  for the last few weeks because for some reason I don't quite understand it happened on a Friday. I went through the whole lot again yesterday morning and filled in a complete Friday, so now it's back to Saturday mornings again, where it belongs.

Not so sleepy yesterday, but it was a dex night . And again tonight...

31/10/21 (3) Bathroom Scales, EarPAP, stairs

 According to my rather ancient ones I've lost a whole kilogram in one day, and two over the last three days.

I think it's time to replace. Off I go Up The Jungle again...

Last night's EarPAP claimed just 24% success (out of 1056 snores). Getting lower every time.

A while ago I was pleased with myself for going straight up the stairs without needing to hold on to anything. It's not so good now. I can still do it but only slowly and needing to get both feet onto the same step to re-set my balance for the next four or five. Much better if I have one hand free for the handrail to keep me going. This confirms my feeling that balance generally has got worse then it used to be.

30/10/21 (2) EarPAP, rain, butternut squash

After a couple of posts about the sleepiness getting better - yesterday it didn't. I got up quite late after a longer than usual night between 4 and 5 hours depending on which sensor you believe most, I had breakfast, made coffee, and sat down in my chair in the sitting room at something like 10:30. Next thing I knew it was 13:30 and Sue had gone out for a hair appointment... OTOH, no more "naps" later.

EarPAP result from last night was a bit more believable. I suppose the thing has to calibrate itself for me:

I find 74% rather more believable than 100%!

Weather forecast for later is close to 100% rain for when I should be playing Boules at Ongar. I have a feeling it will be too wet to go.

Did a Slimmer's World recipe for stuffed butternut squash which apparently I last cooked (and approved of) back in 2015. Vast amounts of vegetable chopping required. I increased all coking times by at least 50% and added a few glugs of olive oil here and there instead of the ridiculous spray oil which I've completely given up. Either you just don't get enough to do the job without dozens of squirts- might as well just be careful with a conventional bottle, or the nozzle gets blocked up. What I wonder most of all is whether the people who write these recipes ever test them in a domestic kitchen. I started work on it at about 16:00 and just had it ready for Strictly Come Dancing at 09:10 - way beyond the quoted cooking time.

Brief cricket comment: By the time I checked the score it was all over - England sweeping Australia aside by eight wickets in 11.4 overs. Jos Buttler showed - not for the first time - that when the mood is on him he's by some distance the best short-form batsman in the world.

30/10/21 EarPAP, and various

That mini-rash has faded completely away. Ankle oedema is there but at a tolerable level. As I have nothing particular on later today, I might have a Furosemide after breakfast. Of course I'm still waiting for appointments from the sleep apnoea man and the dermatology man.

An intriguing report from the EarPAP anti-snoring gadget last night:

Claiming a 100%  seems a bit much, especially on the default settings It also makes for an interesting comparison with SnoreLab:

I'll try again tonight, see how they match up.

Less sleepy again yesterday, I seem to have come out of a bad patch  of that recently. Maybe because I'm back on Lenalidomide for another three weeks?

Didn't go U3A boules yesterday - rain far too heavy and I hear that those who did go decamped early and went  to the King's Head for coffee and cakes. Having lost a whole kilogram since September 20 I don't really need that, especially because I'm on a bit of an upswing at the moment. Too much pasta carbonara at Springfield, probably:

29/10/21 Springfield, EarPAP

A good morning at Springfield - very quiet, so I got plenty of attention without any delays. They got the canula in at the second attempt, and lunch (pasta carbonara) was excellent. Took the new meds home via a shortish walk in Admiral's Park.

That mini-rash hasn't developed - if anything it's faded a little. Definitely not the established pattern, and I can't see any other ones developing.

A new anti-snoring gadget arrived in the post. It hooks over the ear, detects snoring through its microphone, and then transmits impulses to the vagus nerve to relax the airways and relieve the snoring. That's what they say. We'll see. You can't have it in the same ear as a hearing aid (just won't fit right) so should be OK overnight, but if I want use it downstairs if I'm likely to fall asleep and annoy Sue, it'll mean taking one hearing aid out with attendant risk of losing it...  That's if it works, of course. I have a feeling I may be using the 30-day return period.

I was much less sleepy yesterday, which is an improvement!

Good boules at Birchanger / Thorley. I started partnering a newbie in doubles (and I suspect he'd played a bit of petanque before), then he had to leave so the rest of us played a three-way singles and agreed to call it a day and an honourable draw at 8-8-8- Even though it was a very warm day (up to 18C), it still gets cold after 21:00 and not much fun to be out in a rather exposed place like the Birchanger piste.

28/10/21 Sleepy day and a new mini-rash

 Another lazy and sleepy day yesterday - for once I got nowhere near my activity target. I seem to be going through a worse-than-usual "fatigue" patch at the moment.The various apps that monitor sleep apnoea in different ways all give very consistent results day to day (a bit on the wrong side of the moderate / severe boundary) so it's hard to blame that for the differences.

A couple of days ago had a letter from Dr.Ha (respiratory / sleep apnoes) acknowledging the corrections I made in an email and with a revised version of his GP letter with my meds put right.

Just noticed another mini-rash  starting up in that same familiar right wrist spot. It'll probably go much darker red overnight.. Not sure if that thing at bottom right is another one or not yet.

Question: I've just finished the week off Lenalidomide, I start a new week of it this evening. If it's a side-effect, do these rashes know?

Springfield later today (11:00, no need to get up early) for Zometa and meds and hopefully a decent walk in Admiral's Park on the way home afterwards. I need one!

26/10/21 (20) Fatigue again. And again...

It turned into rather a strange day.I got up early to drive to the GP surgery a bit before 08:00 and when they opened the doors at 08:05 I went in , announced myself, explained why I was there all over again, and was told to come back at 09:10!

Not pleased at all, needless to say. but it gave me time to get home for a boiled egg breakfast before driving back again. About a fifteen minute delay before seeing Dr.Ku and after going through it all yet another time and showing him the most recent photos he asked me to send the photos in via an email link and  will refer to a dermatologist for an opinion. I asked about skin biopsy etc. but he can't order those himself, it would have to come from the specialist. He's obviously pulling back from the vasculitis theory in favour of a reaction to lenalidomide, which is certainly a possibility.

Got home and had one of my classic collapses, falling asleep in my chair downstairs with complete weariness. Eventually got over that, felt a bit more energetic and decided to do some hedge-trimming on the box hedge in the front garden. At least that was enough to get me past my fairly high Activity Target for the day.

Had lunch (Sue brought something back from Billericay)  and went straight into another bout of fatigue...

For the first time decided to skip boules at Tower, just felt too tired to go and enjoy it. Plan was to stay home and watch the Bake-Off in real time for once, but still managed to fall asleep near the end so don't yet know who went home...

No rush to get up early tomorrow so I hope for a decent sleep and a more normal day.

UPDATE 27/10/21 00:29 - as usual, feel far fresher, more energetic and wide-awake after my midnight shower than I did all day yesterday. The curse of being a natural-born night owl...

26/10/21 Epping, GP appointment, dentist

Quite a decent morning at Epping in surprisingly good weather. My side lost the first match and won the return, then we won the "Best of three ends" decider which seems traditional there. I think the heated gloves are doing a good job of keeping the finger splits at bay, but I did find my grip on the boule was a little slippery and therefore my length was not good, too many boules finishing well short of target. But I had a few good ones as well... But the heated gloves seem to be doing a good job - that split on my right middle finger is healing nicely and no new ones have appeared. But it's a long way from really cold yet, and that will be when they are really tested.

'Phoned the GP surgery in search of an appointment to look at the photos and discuss these mini-rashes. Dr.Ku already suggested vasculitis and I think we need to pursue that further. No appointments - neither by 'phone or in person - available for weeks to come but I'm told to turn up at 08:00 and I will be seen. But possibly not by the right doctor, we'll see about that.

Everything else ticking over nicely as usual. Saw the dentist yesterday afternoon for a pre-Zometa check - he says all OK. He is an amazing dentist - yet again, near the end of the working day, he was spot on time for my appointment. I've never known one nearly as good a time-keeper - usually you expect at least half an hour waiting time. 

So it's Zometa, bloods, and a new pack of meds on Thursday. That'll be the start of Cycle 19 of "consolidation", and week 73 since we started it. And the usual twitchy week or so waiting for the blood test results...

25/10/21 Bad boules, skin biopsy

Got to Ongar a bit early yesterday  and did some practice - really good. And then I got into a doubles and it fell apart. My side lost by a dismal 0-13. We had a return game and that was a bit better at 5-13 but it had little to do with me. I don't know whether it was using the heated gloves or just near-terminal incompetence, but it's not the first time I've found that a good practice is followed by a couple of poor games. Yesterday I just couldn't find the right lines on territory that I now know pretty well. Epping later this morning, where I'm gradually building quite a good reputation.

As for myeloma, I'm (unofficially) advised that these mini-proto-rashes are unlikely to be dex / skin-thinning related for several reasons including that those tend to take 10 - 14 + days to resolve whereas mine go through the full cycle in just 3 or 4. So that pushes it back to a side-effect of the Lenalidomide. As  I've said before, trivial if these small skin lesions are all that's involved, but if it is vasculitis there may be nastier blood vessel inflammation going on internally and invisibly. Will try to get GP to organise skin scrapings or some other biopsy and immunological tests to try  to determine the cause. I don't expect that will be quick under current circumstances, and there's likely to be a problem timing a biopsy with the first day or two of a new one appearing, which is entirely unpredictable. With luck the practice nurses will be able to do the job at short notice, or maybe they can provide me with the stuff for a DIY job. But probably not.

23/10/21 (2) Sausages, and Vasculitis?

Went to the tea shop in High Roding for coffee and what was meant to be a light lunch, after yet another change of operator - the third in the six or seven years we've been going there. I ordered a sausage baguette but didn't expect three whole large sausages. That's my processed meat allowance for the next couple of weeks gone! That also involved a couple of walks along the High Street which got the activity level up to target for the day.

Something like this, but even more very tasty sausage...

Evening meal changed from the planned hearty autumnal beef casserole to a cheese and egg omelette.

Despite the precautions I've been taking there's a hint of a finger split on right hand middle finger. More precautions needed to stop it developing any further.

The mini-proto-rash has almost faded away - will probably be gone tomorrow. Looking back at the advice from my unofficial adviser and from my GP (that it might be vasculitis [inflammation of blood vessels] and indicative of something nastier going on internally, and that I should take it to A&E if it gets any worse and/or other symptoms develop), I think it's about time to go back to the GP. These little rashes haven't got any worse but they haven't got better either, popping up erratically and not more than one at a time except back at the beginning. Unofficial advice is that we should attempt to determine the cause. If it's confirmed, treatment seems to be either immunosuppressants (which I don't exactly need) or corticosteroids, which might mean increasing my dex dose. Not looking forward to the prospect very much.

So on Monday I'll be on the 'phone to the  GP surgery in search of a face-to-face appointment with Dr.Ku in the near future. Last time we spoke he said I should just tell reception that I'm a cancer patient and they'll suddenly turn co-operaative. We'll see, but the first trick will be to get them to answer the 'phone...

My Oura Ring tells me that my Heart Rate Variability (HRV) balance is optimal, which must be a Good Thing. I won't go any further than that, it's a bit complicated.

UPDATE 24/10/21: a member of Myeloma Support UK has identified these haematomas as a side-effect of Revlimid/Lenalidomide. If so, you might think that your haematologist would not be baffled by them!

23/10/21 A minimal message

Not a lot to write about this morning. Yesterday I did Pill Organisation, played some boules at Ongar and lost despite a strong start, and beat my activity target by 10% or thereabouts. And fell asleep too much.

A new mini-proto rash has appeared on my right wrist - exactly the same place as the last one.

That's it, Short and sweet!

22/10/21 Heated gloves

The accursed finger splits are a combination of steroid-induced skin thinning (i.e. dex) and low temperatures. I used to look at 10C as the threshold  for gloves etc. outside, nowadays it's more like 14C. Nevertheless, the several splits that started a few weeks ago have now healed and no new ones have started, so I must be doing something right.

The new USB rechargeable heated gloves arrived yesterday and got their first outing at Birchanger boules last night. They don't get very warm even at the third of three settings, but warm enough to to keep the hands and (most importantly the fingertips) feeling OK. Nevertheless, I combined the gloves with the USB handwarmer in my right pocket. The hand felt fine throughout the evening and, better still, I found that I could throw perfectly well with the glove on. 

We played only one doubles game but it was a good and long one ending with my side winning by 13-12 - as close a finish as you can get. 

Not much else tonight.Started the final week of this consolidation cycle with no Lenalidomide and the next lot of blood to be taken on the 28th. So I'm moving towards that nervous twitchy time again, waiting for the results and hoping the paraproteins stay on zero...                                                                                                                                                                                                                                                                                                                                                                                                                                                      

21/10/21 Thaxted again, snoring

Yesterday was dominated by a return lunch with (the same) old friends at The  Swan in Thaxted. Most enjoyable, and the Beef & Pancetta Lasagne was excellent. Possibly not my best ever photo, taken by the waitress:

Any hopes of even a short digestive walk afterwards were crushed - or perhaps soaked and squelched out of existence - by heavy rain that began just as we were thinking about leaving:

(Video by Sue, borrowed from a Facebook post)

Despite that, and although heading in opposite directions, we both went only a few miles before getting wall-to-wall sunshine. Extraordinary weather, again.

Once home we couldn't find the energy for much more than the last two rounds of Tuesday's Great British Bake-Off and, in my case, a doze or two. Sue had a wind band rehearsal in the evening so we didn't eat again until I did a couple of (traditionally) poached eggs on toast at about 22:00..

Not surprisingly I missed my activity target, although only by a small handful of points. My ambition for today must be to hit the target before boules at Birchanger in the evening. Forecast looks dry, if rather colder than the last few days.

As for wse immune-compromised myeloma patients, yet again I've spent a lot of time explaining the difference (if any) between Boosters and Primary 3 and why it's important to get them recorded right. Must have sent virtually the same post to various places a dozen times, and still people come and ask what's the difference...

Electrically heated gloves have arrived from Up The Jungle. Should be useful for general wintery purposes as well as for boules. Hope to try them out later.

Bad snoring night last night, according to SnoreLab. Thoroughly annoyed about having to wait until late December to get an NHS CPAP machine. I want to get on with this NOW!! Still, I suppose it will be a Christmas present,  of a kind.

20/10/21 Warm winds at Tower

The good weather just won't give up. Temperatures up to 19C today, and the evening at Tower Petanque stayed good although rather windy, but it was a remarkably warm wind so the electric handwarmer was hardly needed. OTOH, I felt a bit less steady on my legs than usual, especially when stepping over the substantial wooden barriers that separate the terrain from the surrounding territory. So for the first time I used my stick for help, and that created a few problems in handling boules, magnet, and stick in one hand while leaving the other free for the "action" boule. Yet more things to practice...

18/10/21 (2) Consultation and boules

Not a particularly productive meeting with Dr.Ch, which is perhaps not surprising as nothing much has changed for quite some time. We agreed if that the CPAP machine (when I get one) doesn't have a positive effect on my sleepiness, then we might try cutting the lenalidomide from 15mg down to 10. We talked about those mini-rashes and the neuropathic episode after the wet and windy night at Tower, and agreed that neither appeared to be connected to the myeloma.

After that I went to Epping in the hope of some afternoon boules and found several good players to join. Two very good games, and my pointing was probably the best I've ever done. Very satisfying after a few sessions where I haven't played as well as I know I can.

No active finger splits at the moment - the combination of a glove on my left hand and and a handwarmer in the right hand pocket i working well. The USB handwarmer gets up to a good temperature and holds plenty of charge for a full session of boules and plenty more, but it may not be so good when the temperature drops a lot lower. Considering some rechargeable electrically heated gloves from Amazon which could be very useful  when out for walks as well.

18/10/21 Consultation

Face-to-face (apart from facemasks) consultation with Dr.Ch at Springfield later this morning (11:30). Subjects for discussion will include those proto mini-rashes, my sleep apnoea diagnosis, and that strange and possibly neuropathic reaction to the wet and windy boules a while ago.

Interesting boules at Ongar yesterday. I played with a tall and gangly man from the north-east against two very strong club players. We lost the first end by six (maximum possible) and never really came back from that until a bit too late, losing  by 8-13 if I remember aright. In the repeat match we took six in the first end - the exact reverse - and went on to a comfortable win of 13-6. Which goes to show that it's a very strange game.

Nothing else new to report. It was a dex night last night but it had little if any effect on my sleep. Another one tonight.

After Springfield I'll head for Epping for the afternoon session where I should get a game or two. I'll pick up some lunch from a petrol station on the way (probably M&S just west of Chelmsford and on my route)

17/10/21 The Shed, and David Amess

Went to Sawbridgeworth yesterday morning in search of a walk along the towpath of the Stort for some decent exercise - it's a walk we've done often, though more before COVID than after. But the rain got a bit too heavy and that put us off.

So we had a rather shorter walk from where we parked the car (always a bit of a problem there) to The Shed Coffee House for a light lunch.

I had a cappuccino (not at all bad) and we both chose a croissant with butter and jam. It wasn't a proper croissant - would have driven a Frenchman out of his wits - being a basic bread tough somehow worked into a croissant shape - no laminations, no flaky buttery pastry. Nevertheless, they went down well.

Weather looks OK for Ongar boules later - low chance of rain and temperature down to 10C but I have my trusty USB handwarmer to keep my right hand warm between throws.

Nothing else for tonight, which is the second of the week's two dex nights. I seem to have adapted well to it and it now has little if an effect on my sleep..

I can't leave this without something about the murder of  MP David Amess.in what gives every appearance of being extreme Islamic terrorism. Never met him but we know his territory of West Southend and Leigh-on-Sea well - not far at all from here. I also remember the surprise of him taking Basildon in the general election that returned John Major's Conservatives against all expectation,. He was the best of constituency MPs, the best of our often rotten politics.It's good that the opposition parties will not field candidates in the by-election that will follow, but whoever the Conservatives select will have a very hard act to follow.

16/10/21 Apnea letter

After my complaint in the last post about delay in getting the sleep apnea diagnosis letter, it turned up in yesterday's post. I note that it says Clinic Date 24/09/21 and Date typed 08/10/21. And at the end: "dictated but not signed to avoid delay". If two weeks isn't a delay I don't know what would be!

There were a few errors of fact, mainly about my meds - not too surprising as I gave most of the info off the top of my head over the 'phone. I've emailed Dr.Ha with the necessary corrections and additions. Otherwise nothing much new. I'm not going to get a CPAP machine until late December.  That delay is blamed on COVID, which seems a little doubtful to me.  There's also a lot about parasomnia - another medical teem to get my head around - but I don't have any signs of that.

What I will trry to do - for my own interest if nothing else - is to use SnoreLab and the continuous O2 sensor when I'm likely to fall asleep during the day. They should be enough to tell if I'm getting apnea episodes then as well as overnight.

15/10/21 CPAP and sand

 It's now three weeks since I had the 'phone call from Dr.Ha that confirmed sleep apnea. He promised me a diagnosis letter with lots of other stuff about the condition and CPAP machines. Needless to say it hasn't arrived yet. This is so typical of the sainted NHS - superb on the front line, but an administrative disaster on anything behind the scenes. And of course it leaves the patient wondering if his case has somehow got lost or the papers fallen behind a radiator...

All going smoothly on the myeloma front, no recurrence of that neuropathy episode or whatever it was from last week - although I haven't got half as wet and wind-blasted as I was for that. I played at Birchanger last night - just six of us there and we had a long match reaching 12-12 before "my" team  took it 13-12.  As one of my players said, "That was a win for the game more than for us".

The photo is appropriate because that's pretty much what the Birchanger terrain looks like.

14/10/21

No point doing another photo of that min-rash thing,because it has completely faded away. All over within three days,  whereas generally they've taken seven to ten days. Significance? No idea.

Moderate boules at Tower last night, but it was warmer and drier so no repeat of last week's unpleasant events.Again, the USB handwarmer proved its worth - right hand finger splits are healing rather than getting worse. Thinking about getting some electrically heated gloves for later in the year if it starts getting really cold.

No boules yesterday because we went to the Braintree and Bocking Public Gardens for exercise and lunch  (toasted cheese and reed onion sandwich - very tasty).

Very tired all day yesterday - kept falling asleep even in the  post-shower early hours, usually my best time. Hoping that a CPAP machine will help,  when I eventually get one.

12/10/21 Proto-rash fading

 A good night last night, according to the various sensors. Nevertheless, I was dog-tired this afternoon after boules at Epping and a quick rush to the O2 shop in Chelmsford to sort out a couple of issues with my Samsung watch. The weather at Hanbury Gardens was warmer than expected and with the USB handwarmer in my right pocket I managed to keep the finger splits at bay.

One of those mini-proto-rashes appeared again  last night on my right wrist, in more or less the same place that I had another one a few weeks ago. This one is fading very quickly:

That neuropathy attack last week has vanished completely, but a little concerning that the slightest hint of the same foot pain it started with has appeared on the left. Only very very slight, but it's only been on the right before. Well, I'm due at Tower this evening but I hope the weather will be better. Anyway I don't see any reason - other than a vague introspective feeling about not having enough resources to cope with being too wet,windy, and cold because of what I'm constantly devoting in the background to keeping the myeloma suppressed and dealing with the len & dex - to suppose that this neuropathy is myeloma-related.

I've developed a bit of a stiff neck yesterday afternoon and evening - possibly a side-effect of the 'flu vaccine. Both injection sites now very slightly sore, but only very slightly. Have taken some ibuprofen and a good spray of the Universal Panacea (Deep Heat).

While at Epping I heard about a regular player who had both the COVID vaccine and the 'flu one on the same day. In the same arm. He had to miss the boules because of an unpleasant reaction. Hardly surprising!

11/10/21 Primary 3 COVID vaccination

We had our third COVID vaccinations yesterday morning - classed as Primary 3 for me because of my immune-compromised status, and booster for Sue. That's opposite arms to the 'flu vaccination at the GP surgery the day before. I've had no reaction whatsoever to either of them - not even the very slight soreness at the injection site that I had last time.

That's about it for tonight. I've somehow managed to reach double my Activity Target - must have been the walk from the Chelmsford City Football Club car park to the vaccination centre (Melbourne Health Centre) and back again. I've been at home doing nothing very much apart from making butter and cleaning the cat drinking fountain since we got home. And falling asleep of course, plus the usual emails and admitting people to the facebook group. All routine stuff, like cooking dinner. I did steamed leeks in a parsley sauce, which I was quite pleased with. Also a couple of duck breasts and some mini roast potatoes.

Boules at Epping later this morning, if the weather looks good enough. 

10/10/21 (21) Overnight sensors

It being a dex night, when  I woke up after a bare three hours I decided to get up and come through to the study where at least I can make good use of the remaining early hours on the computer. Of course I have my phone in the bedroom and I could take a notebook in, but it's just not the same. I'm old-fashioned enough to think that only a desktop PC is the real thing and the other ones, useful as they may be, are essentially just toys.

One of the things the phone does is to record and analyse snoring with SnoreLab, which produced my worst night yet:

It might not have looked so bad if I had slept on for rather longer.

The overnight oxygen saturation gadget produced a contrasting result with my best night yet:

Hard to put those two together.

The under-mattress sleep recorder showed uninterrupted sleep for most of the night:

and my ring pretty much agrees:

And just a few months ago the only way of knowing how well I'd slept was by the way I felt when I woke up. Now I know how far "the way I felt" reflects the reality. The answer, more often than not, doesn''t reflect the reality very well.

10/10/21 Sausage rolls, Maldon, bloods

Every time you think this wonderful Indian summer has finally ended and autumn is really here, it comes back again. Another beautiful day yesterday so after getting our 'flu injections in the morning we drove off to Promenade Park in Maldon for the daily exercise. And lunch:

That's this week's sausage roll allowance gone!

Third COVID vaccinations later this morning. We'll be a bit cautious of possible side effects but if the weather is decent in the afternoon we'll go for a walk somewhere close to home. Of course the mid-morning timing means I'll miss the usual Sunday morning boules at Ongar. Bound to happen now and again.

I got my last set of blood test results through yesterday. The good news is that PPs are still undetectable (i.e. zero) and for once all three FLC numbers are in normal range. That means the myeloma is well under control. The only slightly concerning point is that overall protein levels are a bit on the low side, but probably not by enough to worry about.

09/10/21 Splits

Despite all my best precautions, right hand finger splits are back. I've got a definite one on my right thumb and a couple more starting up on fingers. Heaven knows  what they;'re going to be like when we get to sub-zero temperatures. it looks as if I'll be fighting them all the way through to next spring. Main thing now is to get these new ones on to the healing stage before they get any worse. Vaseline, gloves, hand creams, hand warmers all the way.

Did Pill Organisation yesterday morning while the water softener was having its biennial service, then went to Ongar for a little practice and to leave the messages  that I'll miss Sunday morning because of the vaccination appointment, and that after the unpleasant experience of a few days ago I'm likely to be a rather less regular player until things start warming up again. And they haven't even got properly autumnal yet, let alone wintry. 

08/10/21 Improving, and angling

Things improved significantly yesterday (Thursday) but I decided to be sensible and cancel Thorley / Birchanger coules to be on the safe side. I'd be a fool not to take some lessons from what happened Tuesday / Wednesday, and I have no wish to go through that again. Walking is fine again now (insofar as it ever is, Sue reminds me of how slow I've become even with a walker to help). Still a little background discomfort in the right foot but nothing bad. Curiously it now seems centred around the ankle rather than the other end of the foot. I've applied a dose of Universal Panacea (i.e. Deep Heat spray) there and also to both shoulders which still don't feel quite 100% right. It may or may not work, but it makes me feel better.

Someone on the facebook myeloma group I admin for got a bit confused with her white blood cell names - basophils, eosinophils, neutrophile, etc. - and wrote about her necrophils. These unusual blood cells are, I think, found only in zombies....

BTW, if anyone's interested,there's a good guide to the confusing world of leucocytes (white blood cells) at <https://www.thoughtco.com/types-of-white-blood-cells-373374>.

Weather forecast for this afternoon looks good so I aim to go to the informal session at Ongar for the afternoon. That'll also give me an opportunity to explain that I'll have to miss Sunday because of my third COVID vaccination appointment, and that I'm likely to be rather less regular than usual through the winter when the weather is bad.

Yesterday had quite a good morning so we went to Oaklands Park for a walk (not a long one, just once round the park and once round the grass in front of the house) then took my car for a much-needed car wash and on to M&S in the Clock Tower Retail Park for lunch (toasted tuna, cheese, and spring onion sandwich) and a bit of food shopping. Although it was a perfectly acceptable toastie, Sue and I are agreed that there's nothing to beat a good cheese and tomato.

Curious Fact Department stimulated by a question on the recording of Mastermind that I'm watching while I blog: the term "angling" for fishing derives from "angle" for a basic hook - either made from bone or wood or metal. The first English book on fishing with a hook - "A Treatyse of Fysshynge wyth an Angle" (pub. 1496) was written by Dame Julia Berners, Abbess of a monastery in Berners Roding - which is no more than a couple of miles from here. No trace of the monastery is left, although we know exactly where it was (the site of a modern farmhouse). For a variety of reasons including eyesight that isn't as good as it was I no longer fish, but I wonder how many of the high-tech carp anglers who frequent the small lakes around here are aware of how close they are to the roots of the sport. Probably not very many.

06/10/21 The worst night of my life, and some good news

The bad news is that the right foot is still bad. I may have to talk to my GP about it, get an X-ray or something to see what's going on in there. I don't need things that limit my walking even more than it's limited already. No "pins & needles" associated so I don't think it's the dreaded Peripheral Neuropathy, although at its worst it's certainly bad enough to keep me awake at night.

The USB handwarmer performed well at Tower last night and it's still pumping out heat (on setting 2 out of 4) some hours later. I think it  should keep me going into the winter.  The right hand finger split feels better, which has to be a plus. Last night was not too cold but turned to rain during the second match and we were all glad to finish it quickly and beat a retreat.  Lost the first match 13-10 but that was after a dramatic come-back from 11-0 - a very good game in the end. The less said of the second one the better...

I have to go to the GP surgery later today to pick up a prescription (and one for Sue) so I'll have a word with reception about my Primary 3 vaccination. I know of lots of people who've had it already, but I haven't heard a thing yet. And it's further complicated by the need to make the timing work with the RUDY study's demands for more blood samples.

Got back home from Tower in the rain but feeling OK apart from that foot. And it may be relevant (but probably isn't) that his morning it was noticeably swollen - more than the left one which is usually the worse of the two. I had trouble getting my right  slipper on, but no problem on the left.

Back to last night. I was just about to get into the shower when Sue appeared to tell me we had a   plumbing leak in what we call the boiler room (in truth, a small alcove off the kitchen). I went down to investigate and found that one of the hose fittings that feed the waters oftener had somehow come a little loose and was dripping.  So I went upstairs again to get my slippers to go out to the garage and find a plumber's wrench to tighten it up. Back to the shower. All that story says is that apart from a little pain from the right foot I was perfectly OK.

Finished my shower, went into my study as usual for a couple of hours of catching up on emails, admitting people to the Myeloma UK Support group, blogging, and watching the Great British Bake-Of that I recorded while I was out at the boules. Went to bed at normal sort of time. Within five minutes the foot became much much worse with intense shooting pains. Much the same in low back and - if possible - even worse in my neck. Impossible to find a comfortable sleeping position, or even to change position in a non-agonising way.. Gave up at about 05:00 and returned - slowly and painfully - to my study chair until 08:00 or so in the morning. My various devices agree on about one hour of sleep altogether, and i'm surprised it's that much. Didn't turn either TV or computer on,which says something for my state of mind.

Lucky that I keep a walking stick in my study, well within reach of my chair. With its help - I doubt I could have got out of the chair without it - I made very slow and painful progress to the bathroom for the necessaries - shuffling just a few inches at a time. Even when I had that first myeloma lesion in my hip, walking wasn't quite that bad. Didn't dare making it down the stairs for breakfast until well after 11:00. 

Now (coming up to 18:00) things are returning to something like normal - I can get about in the house without a stick (although not up or down the stairs) and I'm starting to feel a little more human again - brain has been distinctly frazzled all  day. Have been taking max.dose ibuprofen since mid-day, and also judicious applications of my massage gun on shoulders in particular.

Sue thinks - and she may well have a point - that I've bought this on myself through too much boules and particularly last night's cold,wet and windy weather. I'm going to have to stop trying to get to everything every week  now the weather's getting colder and start to be a bit more choosy about the conditions I play in. Trouble is that I've got several match dates in the diary, and there's nothing to be done about them. Except perhaps to hope that if the weather is bad it'll be bad enouugh to force cancellation or postponement...

I'm wondering if the right foot thing isn't the  onset of Peripheral Neuropathy after all. No pins & needles, but the rest of it - definitely including making sleep impossible - does match what a lot of people report. Something to talk to Dr.Ch about next time (the 18th), especially if it happens again  before then.

And finally, the good news. As I was obviously not up to driving, Sue took over the GP surgery visit and came back not only with our prescriptions but also with two third COVID vaccination appointments for Sunday morning. I'm  not even going to touch on whether they're "boosters" or "Primary 3" - I've had more than enough of that on the facebook group! Just glad to have the dates in the diary, even though it will mean postponing my next RUDY blood samples until five weeks after the shot (Nov 14th). Not much chance of getting them organised between now and Sunday.

Probably a complete coincidence but just (22:20) had a small nosebleed.I don't get those very often. This one's in no hurry to stop.

05/10/21 (2) Right foot pain and handwarmer

That strange sharp pain at the top of my right foot towards the big toe has sprung up again. I'm 99% sure it's nothing to do with the myeloma but it doesn't help with getting a decent amount of walking in. I've given it a generous treatment of Deep Heat, which usually has some effect. The only thing I know that may cause this pain is having the shoe laced a bit too tightly over the instep, but I take great care to avoid doing that.

The USB handwarmer arrived earlier. I've charged it up and will test it out this evening at Tower - as long as we don't get rained off. More about that later, no doubt.

05/10/21 Warm hands

After yesterday's long post I have little to add tonight. The finger splits - undoubtedly encouraged by the skin-thinning dex - are doing well - the left thumb is fully healed and the right middle finger is well on the way. The trick now will be to stop any (or, more realistically, many) more developing. That's going to mean lots of hand cream, gloves all the time outside, and plenty of the handwarmers I've ordered from Up The Jungle. That order includes a USB-charged one which should do to keep my right hand warm in my pocket during boules. Much will depend on how bad a winter we're going to get, and we haven't had a really hard cold one for quite some time.

04/10/21 Splits, Boules, Dex

The right thumb split is pretty much healed now,as long as I don't do anything stupid to open it up again. Wore a glove on it all the time at boules yesterday. The right middle finger one is a little less advanced, but at least no new ones have started. Despite some evidence that wearing a glove on that hand doesn't affect my boule-throwing significantly it just doesn't feel right so I continued to throw bare-handed, keeping that hand in a warm pocket the rest of the time. I think a small investment in hand warmers may be required to keep me going through the winter. The technology may well have improved since I last used them before I gave up fishing, and that was nearly ten years ago now.

Bowel management worked well yesterday, and I stayed off the sena overnight in the hope of being OK for Epping in the morning, when I expect I'll be hearing lots of stories about why they went down 3-13 in the Epping - Ongar challenge. I, of course, was at Tower playing in the Herts & Essex League for Tower 5.

We had a reasonable day for a new team, about 50:50 on points overall. Every team member had to drop out of one game and I chose to avoid Wethersfield as they had two recent ex-England internationals and I preferred to play against Tower 2 where at least I have some idea of the strengths and weaknesses of the opposition players.

There are a lot more petanque players around than one might think:

For a brief while, sunshine broke through:

Measuring. There was a lot of measuring.  I can't cope with the bending down required, so I leave it up to others:

A couple of little videos. They may look the same but they're not (two other members of my team throwing. Best viewed in full screen:

:

:

and yours truly at the piste:

Hard to remember that my beard used to be ginger instead of snowy white. Tempus fugit...

Generally the dex sleeplessness isn't anything like as bad as it once was. It's either the reduced dose (20mg now as against 40mg back then) or my body getting used to it. Went to bed about 02:10 last night, woke up with that old familiar feeling at 05:30 so got up - no chance of sleeping another hour or two, just like old times. I think knowing that I have to be up for an early breakfast in order to get to Hanbury Gardens (Epping) by 10:00 has a lot to do with it. For some years now - many of them pre-myeloma - I've had an internal alarm that works pretty well when there's a real reason to get up early. Years ago I would sleep through anything, and often did. Those days are gone now, dex or not.

02/10/21 (2) Grey, idiot

 Another grey, cold, dank, wet, rainy day. I haven't been out of the house yet (14:15) and don't expect I will, so may have to get the under-desk exercise bike out or I'll miss myactivity target by rather too much

A bit of autumn colour at the back, but very little at the front of the house:

Should have done Pill Organisation yesterday, so had no pills to take this morning. All sorted out now.

Hoping for better weather tomorrow morning, but unlikely to get it. I'm playing for Tower in the Essex & Herts Winter League starting 10:00, while Epping are playing the second leg of the Epping Ongar Challenge at Ongar.

Going downstairs to make some spreadable butter now.

I have to award myself first prize in the idiot of the month competition. I made rather late cat & people tea a bit after 16:00. Then I went upstairs intending to do some things online, but inevitably fell asleep in my chair. Woke up, the clock said 18:45 - time to start the evening meal for 19:15 and Strictly (half an hour late so as to cut out ad breaks and some of the other rubbish before reaching real time).. Simple meal - just reheating some leftover bolognese sauce from the freezer and adding some pasta. And then I looked at the time - 17:15 not 19:15! I must have mis-read by two house first time, while coming too fast out of deep sleep. So we had our evening meal two hours early. Stupid!

Can I blame this on the myeloma? Maybe just a bit because of the tiredness, but only a bit. My fault the rest of the way.

Still raining hard. Whatever happens in the morning the piste will be very wet. It'll be slow and the boles will tend to run straighter than usual.

02/10/21 They're back!

Finger splits are back. As daytime temperatures have not dropped below 14 or 15 (I used to think of 10 as the critical temperature) this is definitely worse than before. I have one on my left thumb (now starting to heal, I hope),  one on my right middle fingertip, a couple more which may or may not be starting depending on whether I can stop them in their tracks, and several more on the sides of various fingers. Needless to say, I'm not happy about this. I blame the dex.

Nothing much else apart from the usual boules. I'm going to have to learn to play with a right hand glove. Shouldn't be impossible as several people use a glove all the time.

01/10/21 October, Springfield, snoring

We're into October - proper autumn - and we've turned the heating on. Still very little colour in the trees, but lots of fallen leaves on the back roads. 

Things were very fast and efficient at Springfield yesterday - got my new meds, my Zometa drip, and my lunch in ample time to get home and then drive Sue into Ongar for the steroid injection into her remaining natural knee.

Boules at Birchanger yesterday evening in just about tolerable weather, but cancelled this morning (U3A at Ongar) because of the poor weather forecast. Played well at Birchanger. I may go to Ongar this afternoon if the rain stops.

According to my SnoreLab app, last night was the worst yet, with a "snore score" of 120 against an average of 61. Could that be related to me falling asleep even earlier than usual last night (i.e. about 01:00)? On the other hand, the O2 saturation monitor recorded an unusually good night and the ring agrees, despite recording numerous short interruptions.