30/08/21 Bisphosphonate check

That wrist rash is continuing to improve very slowly. No other rashes have appeared elsewhere.

Boules at Epping yesterday morning - I played reasonably well but that's all. Won one game, lost another. Also had a splendid chat with the others, accompanied by tea and biscuits, afterwards. One of the great benefits of taking up boules has been meeting new people and making new friends. Very good for me after the last year and a half.

Later today I have the eight-weekly bisphosphonate check at the dentist in the morning, followed by a 'phone consultation with haematologist Dr.Ch. later. We both wanted to make it face-to-face again but the Bank Holiday (yesterday) interfered with his clinic times so it has to be "out of hours". No big problem as there isn't all that much to talk about from my end. There's been a bit in the myeloma media about benefits of daily aspirin as an anti-inflammatory, but I don't think it applies to any significant extent to people in my position, and I don't need another blood-thinner to go with the Rivaroxaban (Xarelto) that I'm on already.

No graphic today. I can't find a relevant one worth posting.

29/08/21 (2) Smashed knee (not mine)

Wrist rash continuing slow improvement, bowel management went a little off-track this morning but OK during a long boules morning at Ongar. Brian and I finally won a match in the Doubles League by 13-12, and particularly pleasing that I won the final end with the last throw of the end, a perfect point right up to the coche. We were well behind on 2-8 but chipped the lead away one point at a time until he glorious finale.

Organisation was a little disorganised because our secretary Carolyn is unexpectedly in hospital. She - a former England squash player - was demonstrating finer points of the pogo stick to her grand-daughter, came off, and "smashed her knee". I have no further details, but surgery expected either in the afternoon or tomorrow.. There's a moral for us all in there!

Boules at Epping in the morning, so another tricky senna / fybogel / laxido decision to make...

29/08/21 False alarm

The good news is that the wrist rash is, if anything, slightly improved. At any rate it isn't any worse or spreading. Too early to judge whether that's related to being off Len this week.

Did Pill Organisation and went out for a walk in Admiral's Park. But we had a false burglar alarm on the front door (I get an automated 'phone call when this happens) so I had to head back for home as fast as possible to turn it off. Fortunately neighbours on both sides are away at the moment. There's a long story behind the recurring problems with Zone 1 (exit zone) but I'll spare you the details.

Despite the frustrated walk I passed my Oura Ring Activity Target for the day. Not quite sure how I did it because I haven't been out of the house again, but I did.

28/08/21 Cat food, boules, wrist rash

Did a few small jobs about the place this morning, including having to track down an alternative source of supply for Blue's specialised "sensitive" cat food. Our usual supplier was out of stock and the #2 one had a problem with its checkout - just kept buffering and never loaded properly. So after some more searching I ended up - yet again - at Amazon. At least we're amply justifying the Prime subscription these days.

Went to Ongar for lunch (sandwich from the Tesco fuel station) and some practice boules. Played well and won the friendly doubles. On Sunday we will try to finish the doules competition - that means one pair (Frank just back from hospital and 90-yr old Felicitie just back from France) have three matches to play, the one against Brian and me being the third. I'm just hoping they'll be too tired to throw straight by the time they get round to us...

Week 4 (off lenalidomide) started last night.Usually I don't notice any difference between len and non-len weeks, but I didn't have all this sleep monitoring stuff back then. Will be interesting to look for any changes in the oxygen saturation and snoring patterns.

After hearing from my unofficial medical adviser who said "sooner rather than later", I emailed the photo of the "rash" on my inside left wrist to my GP. Being the weekend, it'll be a couple of days at least before he gets to see it. I the meantime I'm continuing with the antiseptic cream. Some of those spots are looking quite angry now - bright red centre surrounded by a pinkish circle.

After that bitterly cold night at Birchanger, I have the beginnings of a split on the end of my right thumb. Applying Vaseline. If I'm going to carry on playing through the autumn and winter (not to mention the spring) I'm going to have to find some gloves I can play with. Several people I know use gloves all the time, so it must be possible.

27/08/21 (2) Referral

Slightly to my surprise, Dr.Ku 'phoned within his two-hour "window". We went through the whole thing and he did a tick-box assessment which I passed (or failed,depending on which way you look at it) so he's doing a sleep apnea referral. That's one hurdle passed, now there's just a waiting list. No idea how long that will take but shan't be surprised if it's six months or more, such are the wonders of the NHS.

Some promising news in from Blood Cancer UK about antibody treatments for COVID in blood cancer patients:

https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/covid-vaccine-blood-cancer/covid-antibody-treatment/?utm_source=facebook.com&utm_medium=referral&fbclid=IwAR0exBr8Oqw8kLT-6OMV06DSm7xxjy_ZbQPClarpll1--v0eACpL35EzZxo&utm_campaign=1910086_August%202021%20-%20Enewsletter&dm_i=4DDS,14XTY,6A7U6L,577P6,1 

We're gradually moving closer to my personal target of two COVID treatments effective in immune-compromised people. On the other hand, the Government seems to be in a state of total confusion over third "booster" vaccines. It's coming up to six months since our second vaccinations, and I should be near the front of the queue because of blood cancer but it isn't even clear yet whether boosters are going to happen at all. Or whether the government will use the opportunity to clear some of the vast over-stock of AZ. Or maybe it'll be Moderna? Decisions need to be taken quickly, and stuck to.

27/08/21

 Glad to say I'm in rather a better mood than I was last night, which was perhaps a bit obvious...

I took a furosemide (diuretic) before breakfast yesterday and was still urinating every twenty minutes or so till well after 16:00. That required careful timing of a quick trip to the M&S Food Hall in the Clock Tower retail park this side of Chelmsford to get myself an Indian for the evening - Sue didn't need an evening meal after having been out for lunch with friends. The Gents in M&S was an essential part of the plan.

On a related topic, the bowels are now in excellent working order again without having to resort to Fybogel or Laxido. And having had a few days of normality I have to start planning again for Sunday and Monday morning...

Boules at Birchanger yesterday evening. It was obviously going to be cold and windy but even so I under-prepared for the thoroughly unpleasant weather and left after playing (and losing) just one game, partly because of fear of setting off another round of finger splits.

Later this morning (between 10:00 and 12:00) I'm expecting a 'phone call from my GP Dr.KU about the request for sleep apnea testing. And about time too!

All I can say is that my ring tells me I have several sleep interruptions a night that I'm completely unaware of, my continuous oxygen saturation monitor reveals 20 or so "dips" a night with SpO2 dropping to 86% or so, and my snoring monitor app shows snoring over 30% of the time - some of it "epic"!  None of that is conclusive but it all points strongly in the same direction, so I'm hoping he will be co-operative and that referral to a sleep specialist unit will not take too long. Although it probably will.

Finished Week 3 of consolidation cycle 16 last night, so next week is off lenalidomide and we start the run-up to the next set of bloods and the usual nervous wait for the results.

The right calf rash has now 99% faded away but instead I've got a lot of little red spots / lesions / abrasions / whatever you call them on the inside of my left wrist - curiously, just either side of where my watch strap goes. I'm plastering the antiseptic cream on and crossing my fingers.

26/08/21 Nothing much

There are some days when nothing worth writing about has happened and I don't feel like writing a post just so as to have one every day. I played some boules at Ongar. Dr.Ch's secretary Sarah 'phoned with a time for the next ('phone) consultation on the 31st. Everything else unchanged.

Goodnight all.

25/09/21 Suffolk

The right calf "rash" has now pretty much faded away, which is more than can be said for the ankle oedema. I'm not out of the house until the afternoon later today so can probably risk a furosemide provided I get up early enough to give it plenty of time...

The double senna finally worked at about 22:40, not exactly "overnight" as advertised! But we got there in the end and therefore I didn't take the expected Fybogel and Laxido.

The postponed Suffolk day went well, with some of the best weather we've had recently although it was a bit breezy on the coast. These shots are all from Aldeburgh, the second one being the Moot Hall which plays a big part in Britten's "Peter Grimes". Brings back good memories of "Grimes on the Beach" a few years ago.

24/08/21 RUDY results

I've had results through from the RUDY "Prepare" study into COVID vaccinations for myeloma patients. Click the image for the full-size version:

 

24/08/21 (2) RUDY results again, more boules, senna

Blogger had some trouble handling both the RUDY image and free text, so have had to split into two posts.

Result 1 is hardly surprising as I haven't had a COVID-19 infection.

Result 2 confirms the positive antibody test I did.

Result 3 is disappointing, because so much hope has been held out for "alternative" immune responses with T cell pathways etc. But it's only "probable". Things may change next time.

Interesting and  - in the end - enjoyable boules at Epping yesterday morning. I was hopeless in the first game with new partner Rae against the club chairman and somebody else I didn't know. I just couldn't  get the length right and we lost quite heavily. I started getting it better in the second game which we won 13-11. We then played one of those awkward three against two games against the winners of their match, and again we won 13-11.

Later today we plan to head for the Suffolk coast to do the annual thing with Sue's parents' graves and then go to the Wentworth in Aldeburgh for lunch. What happens after that will depend largely on the weather. We need to leave by 10:00 and this poses problems for my constipation management. I've kept off the senna for the last couple of days so as to be OK for morning boules for Sunday and Monday, and decided on double senna last night in the hope that it will work early enough in the morning...

23/08/21 (2) Dex morning

Went to bed just after 14:00 as usual, woke up with that familiar dex feeling just after 06:00 so got up and did some computer stuff. I haven't had a dex morning like that for a long time. I suppose it means it's still working...

SnoreLab reports a (relatively) good night, with 3 hours "quiet" and a mere 2 minutes of "epic".

23/08/21 Rash, diuretics, nephew

The is-it-or-isn't-it rash on my right calf is looking a little better - more pale pink than red but still the same size. The post-shower ankle oedema is back again. I can't take a Furosemide early this morning because of 10:00 boules at Epping, will have to wait until I get back. Or perhaps I'll take one with me and have it about half an hour before I leave for home. That would continue working well into the night but shouldn't go on into the early morning. Tuesday should be OK for early morning Furosemide because I'm not out until the evening. But Wednesday will be a problem because of afternoon boules at Ongar. That's an informal session so I may have to give it a miss for the sake of the diuretics. Three days in a row should have an real impact, especially if I can manage another one on Friday.

UPDATE / CORRECTION: I completely forgot that Tuesday was Suffolk day trip day. So that plan didn't work.

Played at Ongar yesterday (Sunday) morning. Brian was there but one of our opponents for that long-delayed last doubles match is in France so postponed yet again. The other has just returned from sick leave - several hospital stays, condition undiagnosed but might have been some sort of minor cardiac event. He was certainly looking a bit drawn and thinner in the face so I doubt he's been eating much. Anyway, I partnered him against Brian and one of the ladies and we won two matches - in the second we came back from 11-2 down to win (it's first to 13), which was rather pleasing.

Yesterday evening we had dinner and then a walk around Chelmsford with my nephew David, over here from the USA for a couple of weeks partly to sort out visa issues and partly to see his parents in Dorset for the first time in a couple of years. Not to mention us, of course...

No explanation for his strange left-leaning angle in the first photo. Very good to see him again anyway.

There's something of a fuss in the myeloma media about daily low-dose aspirin being good for us. I'm not sure about the interactions with my regular daily paracetamol, occasional ibuprofen, and Rivaroxaban blood-thinner. Not going to rush into it but will put it on the list of topics for the next haematologist consultation early next month.

This image reminds me of A level Biology in the days when it still had a bit of academic rigour. Furosemide on the bottom left:

22/08/21 Rash

We had a good walk around the back of Writtle yesterday morning,including some very attractive bits new to me but familiar to Sue. Then got home for lunch (cheese & red onion sandwich from the Writtle Co-Op) and Pill Organisation. Already it's the last of the three weeks of Lenalidomide.

Ankle oedema still quite marked - I just can't find time  for three or four consecutive diuretic days, which is what it needs.

The "proto-rash" on my right calf has, I think, now reached the status of a real rash. Another side-effect of either the len or the dex. It's nothing like as bad as some of the photos I've seen, but it is worse than the other small ones which have faded quite quickly. This one looks as if it wants to hang around for a while:

No need to do anything except keep the antiseptic cream going, I think. I'll report it to Dr.Ch on our next consultation in early September.

Boules at Ongar later today. Brian and I may finally get that last doubles match done, or as one of  the opposing pair has been in hospital with either a stroke or a minor heart attack and hasn't been seen on the piste since then (and it would take a lot to keep him away) and the other is over 90, we may get a default or a bye or whatever happens. I'm not too sure of the rules. It won't make any difference either way, because we're not going to come out top of our division whatever happens.

21/08/21 Summer Lunch at Ongar

These proto-rashes keep coming and going. I've got a new one on the back of my right calf. Bigger than the others, slightly mottled in appearance, and (as usual) no raised bump to suggest an insect bite or similar. Nor - fortunately - does it irritate or invite scratching. I've applied antiseptic cream and await developments.

Played boules yesterday morning with the Rodings U3A group, followed by their Summer Lunch:

My contribution of Cheesy Parmesan Biscuits went down well, as they usually do. A couple of Ongar people turned up for the Friday afternoon session before we had finished, and I think they were rather impressed  by the collection of ladies. Opened up a whole new side of my character, I think... I expect I'll get some "banter" for it on Sunday.

Nothing new on the myeloma front. I must now go and catch up with the MyelomaUK Support group - there are some posts on there I should have responded to but frankly have been avoiding because they're a bit too tough to read and I'm not sure I have the right words for them yet.

19/08/21 (2) Eucalyptus, etc.

 Photos as promised. You can now see the weather vane through the eucalyptus!

Photos were taken through the half-glazed back (utility room) door, which might explain some of the strange reflections.

Took a Furosemide in the morning, had quite an effect during the day but post-shower ankle oedema is  still quite marked. I really need three or four consecutive days, but they're hard to organise. No good later this morning, because Rodings U3A boules includes a "summer lunch party" and I'm contributing some Cheesy Parmesan Biscuits, which I made yesterday. I can't miss that for the sake of needing to urinate every half hour..

Played at Birchanger yesterday evening - only five of us there but very friendly, good atmosphere, and I really enjoy playing there.

Made arrangements to meet nephew David, over here from the USA, on Sunday evening. More about that when it happens.

Some rather harrowing posts of the Facebook Myeloma group that I want to respond to but haven't yet come up with the right words. I'm occasionally reminded that my "journey" has been very easy so far. Things can get a lot worse, and in due course of time they probably will. I'm just aiming on keeping that as far away as I possibly can.

The tiredness hasn't been so bad today. Although my ring showed quite interrupted sleep, the SnoreLab app showed the least snoring so far and the overnight O2 monitor showed fewer "drops" than usual. The evidence for sleep apnea affecting tiredness the following day is gradually building up.

19/08/21 Tired...

Very little new or different over the last few days,therefore a bit of a gap in the blog. Had quite a hard walk around the back of Ongar yesterday morning, and have done very little but fall asleep (and make lunch and dinner) since then. One of my worst days for tiredness - but of course now it's the right side of midnight I'm feeling more awake than I did all day.

Managed to extract some more Furosemide from the doctor (Sue collected the prescription because she was out that way for other reasons), and of course the ankle oedema looks a little better tonight without taking any  diuretics for a couple of days. Should be OK to take one later this morning as I'll be in all day - some of which is planned to be helping our gardener to get our eucalyptus tree under control. At the moment you can't see the weather vane that's somewhere inside it. The idea is that he does the cutting and I chop the pieces up to fit in our green garden waste bins. Then the same for the hazel down by the big pond, which has exploded into new growth over the last week or two. Maybe some photos tomorrow.

17/08/21 Blood test results

Last week's blood test results came through this morning, emailed to me as usual by the Springfield Chemo nurses. Paraproteins still undetectable, Lambda Light Chains a little below normal, Kappa/Lambda ratio a a little high but no more so than usual. These numbers drift in and out of normal range, no need for concern. Platelets, haemoglobin, Lymphocytes and Creatinine all a bit below normal but not unexpected under the circumstances. Everything else looks fine, so good news.

Nothing else tonight except about boules, and I'll spare my readers that this time. Everything is ticking along nicely and even the ankle oedema seems a little better tonight.

16/08/21 Dex morning

Went to bed a little after 02:00, woke up at 06:00, couldn't get back to sleep, and got up at 06:30. Well, it's not as bad as waking up at 4, but it's the first dex-enforced early morning for quite some time (I now take my dex on Monday and Tuesday mornings). Otherwise all ok, health apps reporting nothing unusual (by my standards), BP 113/65 (ideal zone)

16/08/21 Mclaren, SnoreLab

Played some good boules at Ongar yesterday morning - played two friendlies,and on the winning side for both. Should have that long-delayed match in the doubles league next week - Brian was off playing golf yesterday.

An interesting car in the car park - some sort of Mclaren. Note the semi-personalised reg. number!

I used SnoreLab for the first time last night. Here's the result:

Well, I can't claim I don't snore any more because I never hear a thing. All building up more evidence towards sleep apnea, and hoping it'll lead to a reduction in the tiredness. Whether myeloma-related or dating back to before that, I'd give a lot to get my stamina and daytime wakefulness back to where it used to be.

Hard to believe that we're halfway through August and in a couple of weeks it'll be the start of Autumn. It's been a lousy summer, with just the occasional good day interrupting the general rainy gloominess. Farmers still unable to get their crops in. Perhaps we'll have a fine "indian summer" to compensate. We need one to raise the spirits before facing another winter.

15/08/21 Mowing, Furosemide, and Snoring

A decent day yesterday with a bit of sunshine to enjoy, so after I finished Organising Pills we went to Braintree & Bocking gardens for a light lunch and a walk around the park. With my limited stamina these days I would certainly have fallen asleep if I had sat down even for a couple of minutes, and the big lawn at the back was badly in need of mowing so I pushed myself to get straight on with it. Afterwards,  pint of weak orange squash for rehydration, fish, cat,and human tea - and finally a sit-down. With the inevitable consequence.

Ankle oedema bad again after my shower, and later today doesn't look like a good time for one of my dwindling supply of Furosemide, unless I leave it until after I get back from Sunday morning boules at Ongar.

Two or three more of those proto-rashes have appeared, left arm and leg this time. I have a feeling they represent a side-effect trying to break through - or maybe I've just seen too many photos of rashes on facebook. There again, might be just the remains of insect bites.

On the continuing subject of my possible sleep apnea, the overnight oxygen saturation monitor showed over fifty "drops" last night, down to 85% again. Remembering that I'm a heavy snorer (or so I'm told, I've never heard a thing) it occurred to me to google "snoring monitor" and that turned up a lot of things. I've downloaded an app called SnoreLab which records and analyses sounds you make while asleep. Or so it claims. I've started a 7-day free trial and the annual sub is only 12GBP. I'll report on my first night with that in the next post. If I have got sleep apnea and if it can be fixed with a CPAP machine or some other approach, it should make a difference to the tiredness / fatigue. I hope.

It can be hard to remember myself - and harder to explain to other people - that although I am in remission, look reasonably fit and healthy, and do more or less what I want to do (if more slowly and not as much of it), I'm actually not too well at all. I've still got Myeloma, my body is still fighting it day by day, and also dealing with the two potent drugs and "supportive" meds I take every day. There's a battle going on inside,even if it doesn't show on the outside. Not for nothing is it called "the Hidden Cancer" ((c) MyelomaUK, I think).

14/08/21 Furosemide

The foot was quite bad again this morning, so decided to rest it rather than exercise it. That gave me time for a before-breakfast Furosemide to do its worst before going out in the afternoon for ssome boules practice at Ongar.

Tried to order some more Furosemide from the GP online, but they've taken it off my list for some reason. I've made a "custom" request form it to be reinstated - won't be surprised to be told I'll have to wait three weeks for a 'phone call before they can do that...

Post-shower ankle oedema is bad again, and my low back is stiff and sore. Maybe I did something while I was at boules. Have sprayed generously with Deep Heat, which is often as good as anything else.

Nothing new on the myeloma front, but I must contact Springfield for the last set of blood numbers. Fingers crossed that they will be good again, because one of these days they won't be...

13/08/21 Foot, ankle, oxygen

The right foot pain is less than it was and seems to be moving down to the base of the big toe. It's taking longer to go away than similar pain has before, but it barely bothered me during boules at Birchanger yesterday evening. I was invited to play a match for them at Standon on Tuesday, but that's booked in for our annual Southwold / Aldeburgh trip so had to regretfully say no.

Ankle oedema is bad post-shower tonight. I need some Furosemides, but they're hard to fit in. Later today I have boules at Ongar in the afternoon and I need a food shopping trip to M&S or Tesco for my dinner (Sue's out for lunch with a wind band so won't be eating in the evening). Maybe if I take a diuretic first thing and leave the shopping until after boules I'll get away with it. Or perhaps I'll simplify things by ordering an Indian takeaway (not home delivery out here).

On the sleep apnea thing, I've got an overnight continuous oxygen monitor (from Amazon, where else?) I've only used it for one night so far but it produced a reasonable 96% oxygen saturation for most of the night but a big drop to 85% in the middle of the night. Not enough to start panicking about but confirmatory of my suspicion that  I may have some level of apnea without being aware of it. If that's right, and if I'm right in seeing a CPAP machine to deal with it in my future, I just hope it will do something to help the tiredness / fatigue thing which is undoubtedly, if slowly, getting worse. We'll see how tonight goes, and if I build up a file of recordings showing significant oxygen drops on a regular basis, I'll send them to both Dr.Ku and Dr.Ch in the hope of speeding things up.

12/08/21 More of the same...

Not a lot tonight. Constipation under good control - best I've been for a few months, long may it last!

Right foot pain is reduced but still there. A spray of Deep Heat last night had little effect.

On the sleep apnea test issue, I have to wait until the 27th - that's more than another fortnight away - before I get a 'phone call from my GP about my haematologist's request for a sleep apnea test referral. Ridiculous delay - I'm now more than six weeks into this and we haven't even got a referral letter out yet. 

As so often the NHS - usually superb on the front line - fails dramatically on simple admin issues. But enough of all that, Played some good boules at Ongar yesterday afternoon after those three frustrated evenings. 

11/08/21 Right foot, Rivaroxaban

First, the good news. That proto-rash I mentioned on my right thigh has 90% vanished and looks a healthy pink rather than anything nastier.

On the other hand, I've got a spot on my right forearm that won't stop bleeding. No idea how I did that.

As soon as I put shoes on for a walk in Writtle, I knew something was wrong. That painful right foot was back again -  on the top and round to the inside. Re-tying shoelaces more loosely didn't help. We went anyway, and did a good 5,500 paces on a route most of which was new to me (although not to Sue). I was very slow (stick only). About halfway through I started feeling something in my right heel and had the usual warning sign of my right foot turning outwards - as it did during the days of the Achilles tendon problem of a few years ago. When we got home I treated the foot with Deep Heat and the heel with my "Shockwave" massage gun. The second one worked, the first one not so much, although now (after midnight) it's starting to improve. I'm sure that neither of these are caused by the myeloma, although it's possible that the disease may be making the threshold for them lower than it might otherwise be.

It's still bleeding. Blood thinner (Rivaroxaban) obviously too effective...

Went to Tower Petanque for the usual Tuesday evening session. Gates closed and locked, nobody around. I drove up the road a bit to the nearest Country Park entrance and wailed a while, then went back - still locked and nobody. Back to that car park. At about ten past eight another member turned up and showed me an email on his phone - a long one about keys and keyholders. I didn't have time to take it all in -but the obvious message was 'tonight's cancelled'. So we said "See you next week" to each other and headed for home. That email hasn't come to me, so I imagine somebody is using an out-of-date address list which doesn't include me as a new(ish) member. I've emailed the secretary. 

That's three boules evenings in the last ten days that have gone wrong. Apart from the annoyance, that's a lot of unnecessary miles with no return for them.

Activity target destroyed by nearly 3 times. Bleeding stopped now (00:58) as long as I don't set it off again. Applying plaster.

Nothing else for tonight. The constipation management plan is working OK, or at least well enough.

10/08/21 Senna and birthday

I take seven senna pills every week -  i.e. 21 of them over three weeks. My GP and the surgery dispensary will only give me 20 at a time. Everything else (except Fybogel and Laxido which come in much larger quantities) is 28 days worth, or a multiple of that. So the senna prescription request doesn't tie in with the four-weekly cycle of the others. I've asked for more Senna at a time (such as 28, or much more) which would simplify the re-ordering process for me and give both Dr.Ku (GP) and the surgery dispensary less work to do. But they won't have it. That doesn't make any sense at all to me.

That little rant was prompted by the trip I made to the surgery yesterday to pick up some more Senna. I had intended to combine that with a walk, but the heavens unleashed a torrential downpour, so I went home instead. Still managed to beat my ring's activity target by 396 / 250, not quite sure how...

Today marks my second Myeloma birthday - not the date of the formal diagnosis (September 9) but the day I knew beyond any reasonable doubt that my MGUS had developed into myeloma. And I'm still here, in remission, and doing pretty well all things considered. Happy Birthday to me!

09/08/21 WJF Video

Here's a very short video from the final act at the Writtle Jazz festival - the Afro-Cuban band Snowboy and the Latin Section - with some of the audience getting into the mood. Not, TBH, really my thing, and one of my favourite trumpeters who usually plays with them and adds what I would call some real jazz to the mix wasn't there, replaced by somebody else who played the charts ok but didn't add that extra something.

08/08/21 (2) Writtle Jazz Festival

This blog is supposed to be about living with Myeloma but inevitably that has meant living with COVID-19 as well. I've long had this date marked as my return to live music (first since March 2020) - particularly suitable as it's part open air and part in two big tents with ample ventilation. Inside the tents I found myself places with nobody else too close and also near the open sides, so the COVID risk was as small as possible to make it. That's why the photos aren't as good as they might be. Hardly anyone, BTW, was wearing a face-mask.

I won't bother to name the bands or musicians, except for Paul Higgs's "Pavane" with Natalie Rosario on cello and an unusual arrangement of the rhythm section: Chris Ingham on keys (with lockdown hair) and guitar on the left, George Double (probably the best drummer of the festival) in the centre, and bass on far right. Also, the first one was taken very early on before most people had arrived. Note the jazz-loving dog in the third pic.

That was a long day - I was there from 11:45 to 21:00 but well worth it. The next thing was due to be Saffron Opera Group's Tannhauser at Saffron Hall, but it's been postponed (for the second time) until September 2022. Possibly just as well, because with my fatigue and tendency to fall asleep, I'm not entirely sure I could stay awake through an entire Wagner opera these days.

08/08/21 Pills, Olympics

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

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

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

06/08/21 Dex and pizza at Springfield

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

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

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

Pill Organisation Day again later. Tempus fugit.

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

05/08/21 Postponed appointment, and Blackmore

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

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

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

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

The church with its unusual wooden spire:

The village pond:

with resident ducks:

And the village sign on the green:

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

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

04/08/21 (2) Multiple Frustrations.

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

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

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

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

04/08/21 Breakfast, Boules, and Furosemide

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

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

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

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

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

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

03/08/21 Face to face consultation

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

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

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

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

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

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

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

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

02/08/21 Morris Dancers

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

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

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

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

Morris Dancers at Ongar