30/09/21 WIC...

 Last day of September, and the outside temperature is down to 6C. Winter is coming...

I've already got one finger split (on end of left thumb) which is taking its time to heal. Going back to lots of hand cream. Low temperatures will undoubtedly affect boules - I'm already wearing a well-insulated glove on left hand (the one that holds the boules yet to be played), and the right hand stays in a pocket in between deliveries. I may need a glove for that before long as well - noticeable that a few more people are starting playing in gloves already.

I've been prone to these splits for several years pre-myeloma but no doubt that the skin-thinning powers of steroids have made the problem worse. I used to think of 10C as the threshold for gloves outside, now it's more like 14 or 15.

Springfield at 11:00 for Zometa and the next batch of meds. Time is going to be slightly tight as I have to be home in order to drive Sue to Ongar for a steroid injection into her bad knee at 14:00. Should be ample time as long as the Springfield pharmacy get the meds ready on time (not to mention right first time!). If they don't, I'll just have to leave early and go back to collect the meds later - extra fuel consumption which I'd rather avoid at the moment with the fuel supply "crisis" not yet resolved.

29/09/21 Hard to find something myeloma-related to write about.

Some days it's hard to find something myeloma-related to write about. But this blog is supposed to be a day-to-day record of living with it, so if nothing much is new or changing, then it follows that there isn't much to write about. And today there isn't.

Played boules at Tower and happy with my game although my side lost narrowly - three of us (two boules each) against three of them with three boules each. I'd rather have the three boules every time as it's so often that the third one is the best. The forecast rain stayed away until the very end of the match, then it came down heavily and we all beat a rapid retreat to our cars and home.

The current state of my myeloma - which is a very individual disease - is so good that I may well die of something else before the myeloma gets me. Or maybe not, but at least there's a chance that the myeloma will not significantly reduce my life expectancy.

Most of the time I feel perfectly well, and people tell me I look well, although I know the reality is that I'm not and sooner or later a relapse will come.. I'm slower moving around than I used to be, and even with a walker I don't reach the speeds I used to think normal. My stride length has shortened as well. Stamina is nowhere near pre-myeloma levels, and the fatigue and falling asleep all the time are a problem. I'm hopeful that treatment for the newly diagnosed sleep apnoea with a CPAP machine will help to sort that out. 

And, of course,  waiting for the letter about my "Primary 3" vaccination to arrive. Probably should be this week.

28/09/21 Ongar Finals Day

Just for the record, here's a photo from Ongar Finals Day on the 19th. My walker and I are doing our bit for the disabled and diverse. I don't really need the walker there but it is a handy way of having a personal seat and of bringing more stuff up from the car in one go if rain looks likely etc..

28/09/21 Consultation

To get to my face-to-face (although both facemasked) consultation with Dr.Ch I had to fight my way past two layers of receptionists who were convinced that the appointment was for a 'phone one today. But I made it in the end, only a few minutes late. Additional waiting time was not too bad.

We agreed that I'm doing very well and that "my biology" (whatever that means)  is of the right kind. Discussed the sleep apnoea diagnosis - pleased to see from the report of the meeting that he spells it properly, which encourages me to revert to it. He knows respiratory consultant Dr.Ha (Broomfield) well and will discuss my case with him. Talked about these mini-rashes but didn't have one to show him. Probably a result of Lenalidomide's ability to alter immune system responses opening the door to minor viral or fungal infections of no particular significance - an indirect side-effect rather than a direct one.

Changing bisphosphonate dental checks from eight-weekly to twelve-weekly. Calcium tablets confirmed as one daily rather than two.

That's about it. The appointment meant I couldn't make the usual Monday morning boules at Hanbury Gardens (Epping)  but I scrambled a couple of eggs for lunch and then went for the more informal afternoon session. Played one game and having trouble with all my throws going off to the left. Obviously something wrong has got into my throw or my grip(s) - if it's dry enough I'll work on that in the garden later before I go to Tower in the evening.

27/09/21 Boules and fuel

Not much to say today. Played boules at Ongar, not at my best by some distance. Played three games, lost all of them. My directional control was way off for some reason. You get days like that. At least the constipation management that makes these morning sessions possible is going well - I'm getting along with Senna only, varying the dose from zero to two according to need, and it's been a long time since I needed Fybogel let alone a Laxido. Or a glycerine suppository...

With the current (and largely media-driven and imaginary) fuel crisis I stopped in a queue for a BP station on my way to Ongar. The queue didn't look too bad and although I had well over half a tank I joined it and came out the other end with a full tank after half an hour.  Well, I'd be lucky to charge an electric car in that time even if I was first in line. The second filling station on the way to the piste (a Tesco Express) was out of all fuels, so I made the right choice. I think a full tank will see me through to the end of this farce.

Later today, face-to-face consultation with my haematologist at Springfield Hospital, and depending on the weather I may go to Hanbury Gardens (Epping) for the more casual after-lunch session. Weather forecast is better for the afternoon than for the morning.

I think that's all for tonight. I may have more after Dr.Ch for tomorrow's post.

26/9/21 Autumn at last?

A different kind of day yesterday - a distinct autumnal feel to the air until the sun came through late afternoon. A day of small jobs and not much else - didn't get out for a walk but comfortably hit my activity target anyway, And finally tightened up that soap dish repair to a state I'm happy with

To my great surprise stayed awake through all one and a half hours of "Strictly" (even though at times it felt like rather more). Possibly something to do with the dex I took in the morning, which of course means a dex night tonight.

Cleared up the confusion over my next haematologist consultation. Secretary Sarah got it wrong (unusual!), and it will be face-to-face at Springfield on Monday 27th at Springfield Hospital. Unfortunately i doesn't look as if I'll have any mini-rashes to show him.

Our friendly local farmer has been fertilising the field at the back. Despite the lack of wind that's left us with a dusty deposit on the back windows, and the window cleaner only came last week. so I shall have to get out of the landing window onto the flat roof to deal with it. A few years ago it was no problem to squeeze out through the quite small window but I was a lot bendier then than I am now. Might be interesting...

There are stories of the current shortage of HGV and white van drivers affecting deliveries to pharmacies as well as to petrol stations and supermarkets. I'm due to collect new meds on Thursday. Fingers are crossed.

24/09/21 (2) Sleep apnea confirmed

Had the phone call from Dr.Ha at Broomfield. Despite getting only four hours on the sleep monitor that night there was enough evidence to diagnose moderate to severe sleep apnea. That agrees with the under-mattress sleep analyser, which behaved much better and put me a little way into severe territory. Here's a screenshot from the app:

and the continuous O2 saturation monitor gave me my worst score so far:

SnoreLab looks almost healthy by comparison:

and just for the sake of completion, here's just part of my Oura ring's report on last night's sleep:

For the sake of total completion,we might as well have a report from the portable ECG machine. It said "No Abnormalities":

It's going to take three months at least to get an NHS CPAP machine as prescribed by Dr.Ha. I'm looking into buying something to get me through the gap and act as a backup if needed.

It was another magnificent Indian Summer day. I spent most of it doing various small jobs around the house but we did find the time for a walk around Oaklands Park and a sausage roll for lunch. Skies as blue as you might hope for in midsummer:

Getting there was slowed by long queues for petrol stations.. People panic buying after government advice to stay above quarter-full in your tank. There again, our Tesco delivery today had no salmon and no orange juice. Cearly the supply chain problems and shortage of HGV drivers are having an impact.

Still not heard anything about my third  COVID vaccination. For the immune-compromised like me it's "Primary 3" (because there may be 4 and more in six months time and beyond), and for everybody else it's a booster, same injection either way!

24/09/21 No alarms

Moving into the last week of September and the magnificent Indian summer continues. Played boules at Birchanger last night up till 21:00 wearing just a polo shirt and didn't feel in the least cold.

On the myeloma front, moving into the last week of the current cycle so no Lenalidomide for the rest of the week. I've never yet noticed it making any difference to the way I feel or sleep or anything else. So far I've been remarkably free of substantial side-effects, long may that continue!

I've got another RUDY (Rare Diseases) questionnaire to do, to see if there's any change in my myeloma experience caused by the COVID pandemic. I get these every month or two - tedious but I think worth doing,

No more proto-mini-rashes, but a post on the Facebook group with photos to suggest that at least one other person is getting something similar. Apparently his team want to dismiss them as "viral", which wouldn't be enough of an explanation for me.

The hearing aids appear to be charging OK. I've bought a couple of things off Ebay - the "sports" nylon retainer springs that fir inside your ear and help to keep the aids in place. My first pair came with them and the current ones didn't, meaning that I've always felt a bit insecure about them staying in place. Much happier now.

I haven't bothered to set my "go to bed!" alarms as the evidence says I'd sleep through them anyway. And at 02:06 I'm still awake and starting to wind down.

23/09/21 (2) Under the mattress...

First night with the under-mattress sensor declared total sleep of one hour and three minutes, Hmmm. Even I do better than that. My ring says four hours forty-five. We'll see what happens tonight.

23/09/21 Sleep apnea?

I'm now in the somewhat ridiculous position of setting three alarms (two on Alexa, one on my phone) to wake me up in time to go to bed at 02:00 or a little after. For several nights now I've fallen asleep at 01:30 or so and not woken up - still in my study chair - until something well after 15:00. Sue says she thinks I've got narcolepsy (I disagree!)

The sensible thing might be to go to bed rather earlier but I know from long experience as a night owl that that rarely works. I need those couple of hours after midnight when I catch up on TV, write blog posts, do stuff for the myeloma groups, and generally get on with stuff on the computer. In years gone by I would tie trout flies into the early hours - the nature of what I do has changed over the years, but the need for that active and engaged time stays the same. If I go to bed a couple of hours early I just don't sleep - unless it's really early like 21:00 or so.

I had an NHS letter yesterday with a 'phone appointment on Friday morning with a respiratory consultant, so I'm hoping that will get somewhere on the sleep apnea situation. If I have  got it, as I strongly suspect, then  a CPAP machine should improve quality of sleep with less tiredness and falling asleep during the day. And that would make life a lot better...

I've got a new under-mattress sleep analyser that claims to detect sleep apnea and lots of other things. Bit of a nightmare getting the associated app to recognise it but got there in the end after a couple of factory resets. First night tonight, along with my Oura ring which monitors various aspects of sleep, my continuous O2 monitor, and my snore recorder. If that lot can't provide some evidence, I'm not sure what could.

No more proto-rashes, and the ankle oedema is almost zero on the right but still quite marked on the left.

Otherwise, things go as normal. A fairly good boules morning at Hanbury Gardens (Epping) on Monday and a good evening yesterday at Tower - lost one match narrowly and won the other against the same opponents by a comfortable margin. And of course I'll be back at Birchanger (weather permitting) later today.

Next week will include the four-weekly haematologist consultation and the Zometa drip etc. That's the last week of Cycle 17 of "consolidation" on dex and len - 68 weeks so far and still in remission although I'm increasingly aware of the toll those drugs take on top of doing their job of keeping the myeloma suppressed. If nothing else, I'm just too slow getting around and doing things.

Fields at Ongar - an easy walk from the car park and piste:

The two lakes at Marks Hall in beautiful late September sun.

It was a lousy cold wet summer overall, but this September has made up for it. As good an Indian Summer as I can ever remember. 

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.

17/09/21 Sleep monitor

I had a fairly quiet morning and early afternoon about the house (including completing the repair of that soap dish, which is now back in place) and then went to Broomfield Hospital to collect my overnight sleep monitor for sleep apnea assessment:

As you can see, no stick-on electrodes involved - a chest and an abdomen strap, a fingertip oxygen sensor, and two little plastic tubes up the nostrils. Those are the things that may prove difficult. I told the nurse that I rarely go to bed before 14:30 and the thing turns itself off automatically at 08:00. She said no problem, that's long enough - which it may well be if I can sleep with all that lot on. I'm just treating it as a normal night and crossing my fingers. I shall keep my own O2 monitor, snore app,  etc. going as well.

We'll skip breakfast at home in the morning, because I have to get the monitor returned to the hospital by 10:00. We'll follow that with breakfast at The Hare (probably Eggs Benedict and a Garnett's sausage for me) and then I'll go on to Ongar to join the U3A group for some boules and maybe stay for the Friday afternoon Ongar practice session.

Played quite well at Birchanger last night, and the new floodlight is good. It just needs a couple of low power lights (which we've got) on the other side to fill in the very dark shadows thrown by that floodlight when it starts to get dark.

One very French player on the left, a very Yorkshire one next, and then the partially-obscured Chairman Ken. 

I used my 75mm shooter's boules and got some good hits with them. Still experimenting with the new grip and on the whole liking it although I tend to go back to standard overhand at longer ranges, plus underhand for long-range shots.

Some very small posible proto-rashes have appeared (right wrist and elbow, and left wrist). I'm applying the antiseptic cream and  watching'n'waiting. These ones are only a couple of mm across.

16/09/21 Thaxted

We went to Thaxted (Essex and "the home of British music") for lunch at The Swan with two old college friends - one of them being my unofficial medical adviser. As he and I are both Clinically Extremely Vulnerable with regard to COVID-19 and my wife Sue is Clinically Vulnerable, I asked for a well-distanced and ventilated table and they put us next to an open sash window. It was good to start moving out into the world again and spend some time in the company of old friends.

After lunch our guests headed off to Cambridge where they are due for a week's cat-sitting at one of their son's houses, and we went off for a stroll around the town. Here's a fine old house next to the medieval Guildhall:

This is the church which we know well from years of going to the Thaxted Festival concerts here:

The windmill (currently undergoing restoration):

Note the church spire in the second photo. Like all the  best spires it can be seen from miles all around, pointing the faithful up to God in his Heaven.

These two photos are of the wall of a cottage near the windmill. I have absolutely no idea what the numerals mean.

All this brings me back to the subject of live music - classical, opera, and jazz - which was my main occupation for years before the combination of COVID and myeloma  struck. I admit to a slightly obsessive personality, and to some extent petanque has filled the void left by the absence of live music in my life. I haven't been to a thing since March 2020 except the Writtle Jazz Festival (in well-ventilated  tents) and can't see myself going back to more than very occasional events for a year or two yet. That's from someone who was regularly out two or three evenings a week for music of one kind or another. At least I'm saving money on tickets this way - enough to pay for the boules with some left over.

15/09/21 Balance, and more biscuits

I've said before that I get occasional patches of a few days when my balance is distinctly worse than usual (which is not the best). I don't fall over but I'm often pleased to have a handy wall or something to  steady myself against. Last night in the bathroom before going to bed I lost balance completely and had to grab anything available to stop myself ending up on the floor. Unfortunately the soap dish screwed to the wall was in just the right place and - well, it isn't screwed to the wall anymore. I bought a new tube of No More Nails (see below) and have done a repair. Now just waiting for the glue to dry completely before cleaning up the many soap stains lurking out of sight underneath and re-attaching it to the wall.

Ongar Boules are having a bit of an event to mark Finals Day on 19/09 and of course I'll make some Cheesy Parmesan Biscuits. Had to go to big Tesco to get a couple of ingredients - wore facemask, lots of sanitiser, and careful distancing. Fortunately there weren't many people in the store so no problem until I got to the checkout, which had the slowest operator in the entire worldwide history of checkout operating... Anyway, that's where I got the No More Nails as well as a couple of essential cheeses. It still feels more than a little strange going into a big supermarket  after all this time, but we have to start inching back to "normality" at some stage.

I had a surprise  'phone call from the NHS yesterday. Thanks to a cancellation, I go in for sleep apnea testing on Thursday afternoon. AFAIK this means sticking various electrodes here and there and wiring them up to an overnight sleep monitor which I have to return on Friday morning. I'm not yet sure of the implications for my usual evening shower and etc... Curiously, the night before last and last night gave me the best snoring results yet - Snore Scores of 14 and 45 against my average of 65, and no "epic" - i.e. very loud - at all.

Played petanque at Tower last night, probably the best I've played yet. I was in a three-man team with the very french Davide and a new member I shall simply call Anon. Davide is a good shooter, one of the two best in the club and the other one wasn't there. Unselfishly he took the "switch" role with Anon - who clearly rated himself as a shooter) taking the shooter role and me as pointer. After Anon had missed too many shots (he got 2/15 or 13%) Davide gave me the role, although I think of myself as more of a pointer and nudger than an outright shooter, Be that as it may, I got 8 shots out of 21 attempts (38%) which I'm very happy with, and some good pointing throws as well. My new four-finger grip did well too - I think I'm going to stick with it for pointing at least. The only bad spot was when I realised that my right hearing aid wasn't in my ear where it should have been. Luckily I found it as soon as I got back to the car  must have flipped out of my ear when I took my facemask off earlier. Anyway, that's a day of difficult phone calls avoided.

14/09/21 Boules, and double Senna

Nearly halfway through September and at least we've had a few Indian Summer days to remember and give us some good walks. Leaves are late to turn this year - hardly any colour showing yet, and in some recent years it's been well advanced by mid-August.

Boules at Hanbury Gardens (the Epping club) yesterday morning. Despite leaving at 09:10 I only just got there by 10:00 - lots of road closures in the last few miles that forced a couple of deviations from the route before I found a way in.

Played three games, lost the first one badly and won the other two. The bowel management worked OK and I've compensated with double Senna last night. Fingers crossed. Not planning to go out until the evening so a good opportunity for another Furosemide with the breakfast pills.

After the games finished I hung around for tea and biscuits and chat. Got some interesting ideas about grip and related matters.

Ongar Boules are putting on a lunch for Sunday,which is Finals Day for our internal competitions. I shall,of course, make some Cheesy Parmesan Biscuits. The timing doesn't work for the Tesco delivery, so I shall have to mount an expedition to pick up some mature Cheddar and a few other things. I shall wear a facemask and distance as far as possible, with a bottle of sanitiser handily in a pocket. Might get that done later today, if the Furosemide allows. Otherwise, Wednesday or Thursday will be fine.

Quick update on those rashes: They've gone and no new ones have appeared. The possibility still exists that they were insect bites or the result of brushing past stinging nettles or similar.It has, BTW, been a very good year for nettles. Several regular walking routes are near impossible with exposed legs.

13/09/21 Mainly about boules

Again I find myself with nothing much myeloma-related to write about. Met my activity target with Sunday morning at the Ongar piste - not many people there yesterday and we just played a couple of friendlies. The bowel management plan worked to perfection, and I didn't take a Senna last night in the hope of repeating the performance (or lack of it) later today when I shall be at Epping. That requires leaving a bit earlier - by 09:20 - to be sure of getting there in time for the various teams and lanes to be allocated.

Ankle oedema is still there but not bad enough to make it difficult or impossible to put shoes on. I may try a Furosemide with the lunchtime pills when I get back from Epping, as I have nothing out of the house planned for the rest of the day.

Now for a boules digression. No myeloma content whatsoever, but this blog is about living with myeloma, and petanque has become one of my main ways of doing that successfully.

According to all the best experts, there are two grips for the ball, and there isn't a huge difference between them. No.1 has the ball sitting right back in the fleshy part of the hand.The fingers are curled tightly around the ball, and the thumb is definitely not on the ball, it's resting on the first finger instead.

This can be delivered without then wrist bent fully backwards if you don't want backspin.

The main variation (No.2) has the ball a little further forward in the hand, held by the loosely curved fingers.Thumb off the ball again. It needs the wrist fully cocked backwards, and gives you more backspin than No.1.:

Both grips are good for applying side-spin by rotating the wrist to the right or left .

The trouble is that the more petanque I play, the fewer people I see using these grips in undiluted form. The main deviation is that almost everybody has the thumb resting on the ball - something that is supposed to throw it off-line.

A lot of people I play with (or against) use a grip something like this (No.3):

with the thumb on the ball and balanced by the little finger resting on the other side of the ball. It seems to work well for them...

I've been working on a variation

with first and middle finger in front of the ball, and thumb and ring finger equally spaced behind. The little finger stays off the ball, which feels a lot more natural than keeping the thumb off in Nos 1 & 2. This (No.4) grip seems to offer a lot of variation in backspin from lots with the wrist fully cocked backwards to little or none with a straight  wrist. It's good for delivering a high lob (something I often find hard with Nos 1 & 2), and overall I like it rather a lot.

And of course there's also the underhand grip, which I use for shooting at longish range where I can't get a conventional grip to go far enough to pitch on the target ball. Underhand doesn't give any backspin but if you're shooting who cares?

It would probably be a good plan to stick to just one grip and learn to get the best out of it. Just as it would be sensible to have just one set of competition boules and learn how they behave in all circumstances. Needless to say I have rather more than one and there's another (which I seriously hope will be the last for a long time) coming soon. More about them later... It's just not in my nature to keep these things simple, although I admire those who do.

12/09/21 Nothing new

Another day following much the same weather pattern. Did Pill Organisation after a rather late breakfast - unusually I slept through to my default alarm at 08:45 - and then we went to Rayne for a walk along the old railway line and a (shared) panini at the Booking Hall  cafe. 

Nothing new on the  myeloma front today.

That may well be the least interesting blog post I've ever done...

11/09/21 9/11, beetroot, oedema

Another day that started grey and damp, moved through warm with heavy showers, and ended up hot and humid. Still no sign of the expected thunderstorms. Went to Ogar for some practice in the afternoon, played a couple of games with the usual others there. Just avoided the rain.  A thing to remember: when the piste is wet, the boules tend to carry on straighter than you expect.

I can't let 20 years after 9/11 go by unremarked. I remember first hearing the news just as I was getting ready to leave work. I stayed, TV and radio on, for half an hour or so while the full scale of what had happened began to come clear. Driving home with the car radio on, I and, it seemed, every other driver on the road was in a state of shock. At home, Sue and I put the TV on and just sat and watched, almost speechless, for probably two hours. Of all the "where were you when?" moments - JFK's assassination, John Lennon's murder, Princess Diana's death and more, 9/11 stands out. It changed the world.

On the myeloma front, nothing new but plenty of activity on the facebook group to keep me busy. I've just noticed that the ankle oedema is quite bad again. No chance of a Furosemide in the morning unless we have really bad weather - the plan is to go out for a walk along the old railway track at Rayne. And for  lunch, probably. Speaking of food, we've got some nice fresh beetroot from a neighbour, so it's time for my favourite beetroot and goat's cheese risotto.

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.

06/09/21 Easy journey and etc.

 A better night again and all the usual things - bowels, rashes, oedema are going OK. There have been a couple of posts on the facebook Myeloma Support Group that make me think about how easy my "journey" has been so far. Two people are six months or so after transplant, still having lots of issues and wondering whether it was all worth while. And one lady with MM who has two brothers each of whom has tongue and bowel cancers and several more besides. Some people have all the luck.And others don't get any of it. C'est la vie.

Boules at Ongar yesterday morning. Played two friendlies against good competition and was on the winning side for both of them. They were both fours (two against two) which means playing with only two boules and I really don't like that. It means you don't get the third boule, which is so often the best one.

The battle with the left hearing aid was mercifully short. It started OK,went dead after twenty minutes, and I got it charging again in another ten, or thereabouts. It;'s still flashing green (along with the right one) now and the app shows left on 99% and the right on 89%.

Boules at Epping tomorrow, and I may have to be home a bit early because we have cleaner problems. One of ours is ill (not COVID) and we may be getting a new pair later today. If so I'll have to be back before they arrive to do the showing around thing. OTOH, they may not come till Tuesday. Won't know until we remake contact at a civilised time in the morning. Sue will be out all day in Cambridge (taking her clarinet for a service and fixing a sticking key) so I will try to use the time after getting back to do some work on VOIP telephony.

Much better weather yesterday, possibly the arrival of a much-needed Indian summer. Here's the back garden in the low evening sun: Long mAy this weatgher spell last!

05/04/21 Pills, and a better night

Another rather lazy day yesterday. Both the recent rashes are completely disappeared, no sign of any new ones. The ankle oedema is still there but at least 50% reduced. I shall continue taking a Furosemide whenever the plan for the day allows. That plan for yesterday did include going out  for lunch (and exercise) but for one reason and another we never made it it. We got into a bit of a tangle with the finances of one of Sue's wind bands now they're starting to emerge from lockdown - that took up a bit of time and patience and is only half disentangled as I write.

Did the Pill Organisation Thing and discovered I had rather fewer of a couple of pills than I thought. I think some of them have dematerialised or somehow found their way down the back of the sofa. I'm off to the GP surgery website to order some more when I've finished this post.

In the afternoon forced myself out for a walk up to Pepper's Green Lane and back with just a stick. It's slightly frightening how slow my walking has become, and how my stride has shortened. It used to be a good metre when I was going well, now it's only about three-quarters of that.

An increasing annoyance (and nothing to do with myeloma) is my left hearing aid. I put the right one in the overnight charger and it behaves perfectly. The left one, however, either refuses to charge at all or goes ok for a while and then stops. It can take all of an hour to get it to behave properly - which is not how I want to spend the  early hours of the morning. I've been in touch with Specsavers about this, and basically there's nothing I can do about it until the rechargeable battery comes due for replacement some time next year, when I can probably get a new charger as well..

I had a better night last night although my Snore Score was the highest yet at 113. But no "can't swallow" events. Oxygen saturation wasn't bad with only 1.6 drops  per hour and nothing below 89%..

Boules at Ongar later this morning - no matches (I've finished those) so I can afford to turn up a bit later than usual. On the other hand, it's Ongar Sunday market day so there will be pressure on parking spaces. Better get there early anyway...

03/09/21 (3) Infection?

It's been a strange day. I cancelled U3A boules and felt lousy all morning and afternoon - did little but sleep in my chair downstairs. Felt as if I was fighting some sort of infection but temperature remained OK and no other symptoms apart from feeling a bit cold on what was actually a warmer day. Anyway, things started to improve early evening and feeling much more normal now (21:25). Hoping for a good night without that "can't swallow" feeling.

03/09/21 (2) Bad night

Not as good a night as I've been having recently. Woke up a bit before six with the feeling of being unable to swallow that I remember from taking Tramodol when I broke my shoulder four years ago. It's not easy to get back to sleep after that, so I didn't. My ring shows good uninterrupted sleep before that, but my Snore Score hit a personal best (or worst) of 97:

and the overnight oxygen saturation monitor shows some drops, but I've had worse:

Temp is OK at 36.5 and BP 123/74 also OK. My hypochondria score would probably be off the scale, if I had one. Thinking about yesterday's developments with that rash, and there's always the possibility of a reaction to the Zometa.