31/05/21 Bowels, Boules, and dex nights

Again, not a lot to write about. The recent digestive disturbances seem to have sorted themselves out and I went back to one senna last night.

Went to Ongar Boules yesterday morning and played one game with Brian in the Doubles League against a very strong pair. We stayed level with them up to 8-8 but then they put on a burst and won 13-8. Not too awful a result and I think Brian and I have learned a thing or two tactically. Will probably play another match next Sunday.

I stayed off dex over the weekend, on the fairly remote possibility that it may have contributed to my fall last week (all now healing up nicely BTW but I'll be forever remembered for it). No question that I did feel my balance was better yesterday. So tonight (Monday) and tomorrow will be the new dex nights.

Did I mention a right hip problem a day or two ago? It was much better today, although it started to come back a bit yesterday evening. As a left hip problem led to my myeloma diagnosis I've been watching this one closely. There's none of the feeling of a mechanical problem with the joint this time and it's responding to Deep Heat spray, so I'm 99.9% confident that it's just a muscle tweak and nothing worse.

29/05/21 Public Gardens and Blood Tests

Went to Braintree and Bocking Public Gardens this morning. It's a smallish place but with a lot of variety (also plenty of benches and bins). Once around isn't enough of a walk, twice tround makes it better...

This photo is of "The Stumpery" - a habitat designed for insects, bugs,  fungi, etc.. Right up my street as a biologist!

After that, a light lunch (cheese biscuits, no sausage rolls) and then the Tesco delivery and online backgammon as every weekday, plus a few little jobs about the place and a trip to the GP surgery to pick up a prescription for my blood thinner (Rivaroxaban). It's strange how you can start of with all the different pills together on the calendar but somehow they all drift apart so instead of doing just one prescription every month (or four weeks) you end up having to do two or three different ones. It may have something to do with entropy.

No more bowel issues, fortunately. Tonight I'll re-introduce the senna and maybe a Fybogel, depending on how things go. And I'll definitely move dex mornings to Monday and Tuesday which will keep them as far away from boules days as possible.

N ow for the good news. Somehow - possibly because last Friday was Sue's birthday - I forgot to request the usual email of the last blood test results. But I remembered today and I now have them.

Paraproteins still at "No paraproteins detected" and Free Light Chains are OK - Lambda is a little low and the ratio is a little high, but neither worse than I've had before and they usually come back into normal ranges next time. Otherwise, all is good under the circumstances. In the immune system department (which I'm paying particular attention to since that positive COVID antibody test result) all is normal except for lymphocytes being a little low. The three immunoglobulins are below normal, but I think that is to be expected. Pleasingly, haemoglobin is back in normal territory although red cells are a little low. Platelets below normal, but no more so than usual. Everything else, including liver and kidney functions (which may well play a bigger part further down the line)  are all good. And the COVID swab came back negative, of course. I've now had eleven "professional" antigen swab tests, plus six (I think) self-administered ones, as well as the one antibody test. Probably not a record, but certainly enough.

So I'm happy again. Until next time..

28/05/21 The world turned upside down

And not just the weather, which was vastly improved yesterday. We went out to a local farm shop in the morning, getting enough nice veggies to last us through the week. I won't mention the sausage rolls for lunch...

In the afternoon we tackled the grass. These days Sue does the front and the nearer part of the back, including the rather tricky stuff around the fish pond, using the little battery electric mower. I do the big back lawn and the side with the big key-start petrol mower, leaving most of the fiddly stuff around the edges for our gardener to do with his strimmer. I can't really do pull-starts since I broke my shoulder back in 2017 (oh for those innocent pre-myeloma days!) hence the need for electric start. This new mower doesn't have either a manual choke or the rubber bulb you have to squeeze a few times before starting and which can easily lead to flooding the engine. With this one you just turn the key, and off you go - as long as you've remembered to put some charge in the lithium battery first. Progress!

Mowing got me up to no fewer than six times my activity target for the day, which I'm sure is a record. I had an hour or so left before tea time, so decided on a little boules practice. And as I took the boules and a couple of circles down to the back lawn, I was hit totally out of nowhere by a small diarrhoea event. That's the second time it's happened in the last few weeks. I'll spare you the details, but I still got twenty minutes or so of practice in.

I took a couple of Loperamide capsules, and have had no recurrence. Also decided to stay off the nightly senna (and the other anti-constipation things) for a couple of days at least. This makes finding the right balance even more difficult than it was before. If I'm going to go one side or the other of ideal, I'd take moderate constipation over unpredictable diarrhoea any day.

I don't know why this change to my habits has arisen. As far as I know I haven't eaten anything suspect. The only thing I have done for the last few weeks has been to drop the usual senna on Saturday nights in order to be OK for boules on Sunday morning, compensating with double senna (at least) on Monday night. Maybe that has disrupted the system enough. Anyway, after my fall last weekend I'm thinking about moving my dex nights from Saturday and Sunday (pills in the respective mornings) to Monday and Tuesday, just in case the dex may have some effect on my balance. Probably not, but why take a chance? With boules on Sundays, Wednesdays, and Fridays (when I can), those are the only two days that are clear. and it should help to avoid any possible contribution of dex to the sudden-onset diarrhoea. Needless to say, the list of dex side-effects includes both constipation and diarrhoea...

I've just been looking up some background info on Loperamide. Didn't realise it was the active ingredient in Imodium. Live and learn!

26/05/21 Jungle frustration, and normal life.

Another dismal couple of days, preventing a decent walk or lawnmowing or boules practice on the grass. Nevertheless, met my activity targets again, helped by a trip to the GP surgery pharmacy to pick up a prescription, and several ineffective attempts to return something to Amazon. Nobody will accept a simple barcode anymore, they all want a QR instead, but Amazon won't give me one...

Nothing else to report worth talking about. A couple of delayed effects of Sunday's fall - some pain and soreness at the base of my right thumb, kept under control by applications of Deep Heat, and slight bruising across the bridge of my nose. I didn't think about it at the time, but I suppose that with the bone-weakening powers of myeloma and dexamethasone combined I was perhaps lucky to get away without breaking something. Maybe going back on the bone-strengthening Zometa was the right thing to do!

Later today and if everything goes to plan I hope to set up VoIP internet telephony as well as doing some shoe repairs with specialist shoe glue provided by Amazon, and a repair to their Venetian blind in the shower room with superglue. Not confident about that last one - it may need a new blind altogether. Won't be the first time... As I've said before, normal everyday life goes on, myeloma or not. And a good thing too - it's an anchor to sanity after reading some of the stories about late-stage myeloma that have been on the Facebook group recently. Not very pleasant. Not at all.

I want to stay engaged in "normal everyday life" for as long as I possibly can. Apart from keeping on taking the pills etc. that's the best way of keeping the beast at bay that I've heard of. Looks as if that may mean more boules and less live music than before, but everything changes...

24/05/21 Accident-prone?

After yesterday's nose-plant at Ongar Boules (now recovering very well, and no associated aches and pains this morning) I had another little "accident" this morning. I fumbled getting the bread knife out of the drying rack and gave myself a little slice across the top of my right middle finger.

Nothing to worry about and lost only a couple of drops of blood, but not my usual level of knife-handling skills!

Ongar Petanque branded clothing has arrived - polo shirt, fleece, light and heavy "waterproof" jackets - and all at remarkably cheap prices (under £70 for that lot). Quality seems good. As almost everybody else wears these, I'll feel a bit more part of the gang.

23/05/21 (2) A dangerous game!

Went to the Ongar piste this morning to play my first round match against Brian in the Singles competition. I did not expect to win but thought I might get four or five points against him (first to thirteen wins). Then, during the first end, this happened:

I'd like to claim it was the result of a bare-knuckle fist-fight over a disputed decision, but Brian's far too nice a man for that. In fact I tripped over the wooden surround of the piste and went straight over, taking 90% of the fall on my nose and maybe 10% on my right hand. I wasn't using a stick, and there lies a moral for the future - but carrying a stick while also dealing with two or three boules and a magnet on a string isn't easy...

I have felt my balance to be a little worse than usual for several days, so perhaps I should have paid more attention to warning signs. I had a patch like that a few months ago, but it passed and I was back to normal balance - which is never exactly good in the first place. I don't know if this is related to myeloma meds, but it was a dex night last night...

Be all that as it may, I lost to Brian 2 - 13, so I'll be a spectator for the rest of the Singles. Brian and I make up a team in the Doubles League, and we might do fairly well in that - contrasting styles etc.. He'll be the pointer and I'll be the shooter.

23/05/21 More Boules, mainly

Did the Pill Organisation Thing yesterday evening so as to save time later this morning before going to Boules - if the weather permits. Forecast says a bit cold but only low chance of rain.

It might not seem that relevant but I'm going to carry on posting about Boules because I regard this new activity/hobby/whatever as an integral part of my myeloma physical and psychological treatment. As I said before, it does me good in a number of ways.

Drove down to the piste early afternoon and spent an hour practising before getting home in time for cat tea and Tesco delivery. Then, as the back "lawn" was finally starting to dry out after days of rain, did some more practice with one of my new sets of "practice" boules. That's eight of them (or 16 if |I use both) which gives a chance to stay at one end and try to "groove" a throw rather than interrupting the process every few throws to go to the other end. I'm mostly using two plastic 50cm circles - one to stand in and the other to try to drop the boule into. Not bothering with a jack/coche for now, just concentrating on getting the bounce where I want it. The main things I'm working on, now I think I've got my stance sorted out, are the high lob with lots of backspin, sidespin (strangely, I'm finding the rather more difficult and shoulder-twisting (off break - i.e to the right) works better for me than the easier leg-break to the left. But just as in cricket, you can turn the ball but it's no use if you can't reliably drop it in the right place! Let's just say I'm getting better.

Slowly.

The new practice boules are chrome-plated and quite cheap (co0mpared to stainless or carbon steel "competition" boules, which come in sets of three - the largest number needed in competition play). They should last for years on grass provided I keep them dry and well-oiled, but using them on the much harder surface of our gravelly Ongar piste would rip the chrome plating off in no time.; On sand - if I ever meet it, maybe not. But for the moment I'm keeping them for practice (or games, if I can find an opponent) on the grass at home, even if the bounce is highly unpredictable. All part of the fun...

Also working on "shooting" (i.e knocking an opponent's boule away) using the underhand grip to hit the target ball directly without hitting the ground first - this has the advantage of taking any vagaries of the piste out of consideration, and doesn't need any spin put on the boule. The method is demonstrated by this gentleman, although his stance is wrong (right leg should be forward) and his boule is a rather extraordinary colour...

Otherwise, as for the last couple of weeks, I omitted the usual senna last night in the hope of having a clear morning. There are public WCs just a few minutes walk away from the piste, but I'd rather not interrupt a game. As usual, will compensate with a double dose and maybe a Fybogel this evening.

Need a good long walk - haven't had one for days because of the appalling weather - worst May I can remember. Boules helps me to get up to my target (easily met yesterday) but I don't really feel it does enough. Can't get up to what I now regard as a decent speed for one thing. So will try for the Triangle at least after lunch, if it isn't raining by then.

No reply so far to my question about what my COVID spike antibody result actually is. I know it's above the positive/negative threshold of 0.8, but  not by how far. I'd like to know that, but it is the weekend...

21/05/21 Pakwaan

Another wet cold windy day. I haven't been any further from the house than the bins, and that wasn't much fun. I can't remember a May as bad as this one has been so far.

It's Sue's birthday so we're going out for dinner to Pakwaan in Writtle. This will be our first proper meal out since the first lockdown began, so more than one thing to celebrate! I've already sorted out my evening pills for after the meal (I have mini pill boxes which work well for this kind of thing).

It was a delicious meal, although a very long time coming because of a problem in the kitchen with some new software supposed to print the chef's tickets from the orders taken at the tables. Just about everyone had to wait a good hour between starter and main, or before getting anything at all. 

Missed my activity target by 2%. Hardly surprising considering the weather etc., but annoying all the same.

20/05/21 Admin

Some more news. I'm now an Admin on the Facebook Myeloma UK Support Group that I've mentioned often. Someone stepped down, they asked for volunteers, I said "I'm up for it", and here I am (along with another couple of new people). It's a really good supportive group and I look forward to working with the other "behind the scenes" people.

We're about to head for Ongar for a walk and a bit of shopping in this cold and blustery weather. I have boules in the car, might just stop at the piste for a quick practice or even a game...

19/05/21 Brunch

Still on a bit of a high after yesterday's  good news. Have emailed Superdrug asing if they can give more detail on the result other than ">0.8 U/ml".

A couple of friends came to our house this morning for a chat and brunch before Sue had to go off for an appointment. I made the bacon & egg sandwiches, which seemed to go down well. Just another sign of things slowly getting back towards "normal". Then I had a hearing aid check booked at Specsavers - about 5% deterioration in my hearing since 2018,  well within the capacity of my hearing aids to handle. If not for that I'd have been on the boules piste at Ongar.

That's about it for today, apart from taking some pills. Then taking some more pills. And so it goes on...

One more thing. The AdCal substitute (calcium and vit.D3 chewable tablets) arrived from Healthspan. So now back on track with those for however long I stay on Zometa, which should be another six months to make up the standard two years of it.

18/05/21 Good news - or at least I hope so!

 I've got the result from my COVID antibody test:

(Click the image for an enlarged version)

I'm trying - without success so far - to find out what that number of 0.8 U/ml (International Standard Units per millilitre) means, apart from being the threshold between negative and positive. And it doesn't say how far above that threshold I am. But (with due caution about false positives) I know I haven't had COVID so any spike protein antibodies in my blood can only have come as a response to the two doses of Pfizer vaccine. It doesn't mean I'm about to throw out all my face masks and bottles of hand sanitiser, but it does give me a huge boost in confidence about going back to "normality" (Indian variant permitting!)

What this result means (assuming it can be taken at face value) is that my myeloma-damaged immune system isn't too badly damaged - still capable of generating a response to an antigen it hasn't seen before. And that is very good to know - I've been feeling positively euphoric since the result arrived, as I had been telling myself to get ready to get a negative .                                                                                                                                                                                                                                                                                                                                                                                                                                                                                

17/05/21

Went to bed at 02:05, awake 6:10, got up at 07:00. Fairly normal for a dex night these days.

COVID antibody test done and waiting to be posted this afternoon along with the RUDY blood sample (that's the myeloma content  for the day). I used only one of the three lancets provided to get enough blood. It must have gone quite deep - certainly felt like it! Difficult to get all the blood into the narrow opening of the sample tube, especially while "milking" the punctured finger at the same time - I missed a couple of times.

Getting the RUDY sample done at the new Chelmsford Health Hub (just behind the bus station) wasn't as easy as it should have been. I used my Blue Badge to park on a double yellow line almost directly opposite, was met by a man with an infra-red thermometer and some hand sanitiser, and was sent straight through to a room despite being at least ten minutes early. Despite my describing what needed to be done in some detail  while booking the appointment, the nurse was clearly unhappy and after a few unsuccessful rounds of questions and answers - including the possibility of me being charged for the process (they get va £16 payment for doing it!) - she went out for a lengthy discussion with at least three other people and then came back satisfied. No charge...

All done and I put that "bio-secure" package and my COVID antibody test in the post. 

Also having a little issue with Springfield Pharmacy. Now I'm back on Zometa I should be on twice daily AdCal as well, but they didn't include it in last week's meds and I didn't think about it at the time - too much fuss going on about whether I should have steroids or not (answer:yes). I didn't realis eabout the missing AdCal until doing Pill Sorting on Saturday evening. I emailed the chemo nurses and got this reply this morning:

Dear Mr. Crisp,

Yes you will be back on Adcal once Zometa is administered, Pharmacy will give you a month supply on the day of your treatment and you can receive further supply from your GP.

Kind Regards
Xxxx Xxxxxx (Oncology Pharmacist)

Obviously he doesn't want to supply enough for the remaining three weeks of this cycle, So I wrote a letter to my GP asking for it on prescription, probably one time only, and drove off to the surgery between tea and backgammon to put it through the surgery letterbox (this is probably quicker than trying to get through on the 'phone). I got there, parked, reached for the letter which I KNOW was on the passenger seat - and it wasn't there. Or anywhere else in the car. So I drove home, presumably with the invisible letter hidden somewhere. It wasn't at home either... Final decision: ordered some online from Healthspan, will be here faster than a prescription would be filled and collected, and I'll save nearly enough in fuel costs to pay for it.

16/05/21 (2) Boules and bloods

Despite the threatening forecast, arrived at the Ongar piste 10:40 in warm bright sunshine and it stayed that way for an hour or so.

Then the rain began, quite heavy but it lightened up after twenty minutes or so

I played three matches, lost count of who won what, learned a few more names, and played some decent throws. I also met my opponent in the SIngles Competition and partner in the Doubles (the same man, but not the one I thought it was). I still think he'll win the singles but I think we might make a half-decent doubles team and get through a round or even two.

On the myeloma front, dex night #2 coming up, and tomorrow I'm off to the new Chelmsford Health Hub behind the bus station for them to earn their £16 by doing my  RUDY (Rare Diseases Study) blood draw so I can put it in the post well before the weekend. All I have to do is to work out where to park, although the Blue Badge will help with that!

Now about to do my COVID antibody test which got put off for a day or two for a reason I now can't remember.

16/05/21 Gardening returns

I haven't done much gardening since the myeloma struck. The garden was already getting a bit too big for us to manage alone and we've employed gardeners to help ease the load for all the time we've been here. Twice-yearly hedge cutting, if nothing else, gives them plenty to do.

Yesterday I charged up my cordless trimmer and attacked the box hedge at the front. It had grown enough to obscure the view to the right when turning out of our drive, and something had to be done to restore the lines of sight. I hope I've done enough. Our current gardener, like all those before him, seems to have trouble understanding the instruction to be vicious with trimming hedges, with the result that they are gradually taking over. 

Gentle rain started as I was finishing the hedge trimming. So I retreated inside and made poached eggs for lunch.

The back lawn seemed dry enough to cut, so I attacked it with the new electric-start lawnmower. Light rain started about halfway through the job, but I finished the back grass (apart from fiddly bits around the edges which I now leave to the gardener with his strimmer) and did the bit down the side as well. That includes another hedge that needs a vicious cut-back. If it dies, it dies and we'll just plant something else. Or maybe nothing at all.

Anyway, I've had a fair day's work in the garden, and it's good to know that I'm still capable of it.

Pre-myeloma I decided the most efficient way to do the back lawn and its various obstructions was diagonally. One way, and then the opposite diagonal next time - longer runs and fewer 180 degree turns. None of our gardeners has taken up that suggestion - they all want to do straight up and down...

Doing more garden work (now that I feel more capable of it than I did last year) is a definite plus for me psychologically as well as freeing up gardener time for other things..

The draws for the Ongar Boules awards  have come through. In the Singles first round I'm against  a guy I've payed against before in a friendly and I know he's good. I expect elimination in the first round

I'm paired with him  in the Doubles. He might be good enough to get us through the first round if I can play half decently in support....

15/05/21 Security, CAR-T, Lenalidomide

 Logging into this blog just now (using Chrome) I got a security warning about phishing attacks. I am not aware of any such, but you never know. Perhaps it's time to look into improving the security...

In the meantime, this page gives advice on what to do. Basically, click [details] and take it from there. And stay safe, obviously. Don't click anything that might be a suspicious link.

Yesterday's two hour MyelomaUK Focus Group on CAR-T was good and interesting. CAR-T is the up-and-coming gene therapy technique which (at it's simplest) involves taking T cells (part of the immune system) from the blood, tweaking their DNA using the CRISP-R technology (regrettably, nothing to do with me) to give them the ability to attack myeloma cells, then putting them back and letting them get on with the job. The best outcome would be deep and long-term remission, probably with no need for any maintenance drugs - the return to "normal life" that everybody wants - and the worst would be some potentially nasty side-effects including neurological ones that might deprive you of the ability to walk or speak. But even at this early stage, the risk/benefit analysis looks significantly better than stem cell transplant. So far trials are only looking at patients past lines 4 or 5 (I haven't reached 2 yet) and if all goes well and CAR-T moves closer, I reckon there's a good chance that by the time I've moved on a couple of lines it will be available for me. 

That occupied the morning. After a light quick lunch (advice:avoid Marks & Spencer's "tomato and cheese pinwheels" - tasteless, bad texture and mouth feel) I went to Ongar for some boules practice. Played a couple of games with the other two regulars who were there, then did a bit of solo practice. Got home just in time to make cat tea.

Cycle 14 started with a return to Lenalidomide as well as dex. There was a question on the Facebook group about whether people felt different or better on the week off Len. Dr.Ch has asked me that question a couple of times and seems surprised by my answer that I don't feel any difference at all between the three weeks on Len and the one week off.  But that's the way it is.

The COVID antibody test kit that I ordered a couple of days ago has arrived. Will do it later today. I understand the various issues about interpreting the results but I'd appreciate any evidence that the two Pfizer shots have actually achieved something.

Finger splits: they aren't beaten yet! I have a couple of small ones starting up in the old familiar places. I'll treat in the usual way and hope for warmer weather...

13/05/21 A bit different...

Unexpected events on the digestive front this morning. First time before breakfast pretty much normal, second time an hour or so later, much looser and the closest thing to diarrhoea that I've had for a long time. certainly going back to before myeloma treatment started. I opened up the pack of Loperamide that I've had since Springfield gave it to me in September 2019. Took two capsules and nothing to report since then. I don't have any ideas about the possible cause of this dramatic deviation from the normal path, certainly don't think I've eaten anything to account for it.

Went to Springfield Hospital as planned, arriving a little early for my 12:30 appointment. Canula inserted, used both for blood draw and the Zometa drip (which |I hadn't expected today but they had ample time for it - didn't seem very busy at at all. That took us to 13:30 or so, and that's when the trouble started. Some sort of administrative foul-up meant that my dex had been left off the prescription and it took a ridiculously long time to get that sorted out. I had to wait very nearly another two hours to get the dex, and got home just in take to take my lunchtime pills at teatime. Well, these things happen (and in fact this was the second time I've had such a long delay) and one has to accept them, but I was fuming inside... Not a good way to pass the afternoon.

The good news is that, just as before, no noticeable reaction to the Zometa. Some people get it quite badly but I have my usual lack of reaction.

In the morning I have a Zoom focus group meeting about the up and coming CAR-T gene therapy for myeloma organised by one of the MyelomaUK panels I'm on. And someone should be arriving to attend to a problem with the front door (outside the scope of this blog!) And a Tesco food delivery to get us through the weekend and into next week. The weather has only a small risk of rain after lunch, so my plan is to go to Ongar for some practice Boules and maybe a match or two.

12/05/21 Myeloma, Boules, Backgammon

Yesterday's summary:

Myeloma: Took my breakfast pills. Took my lunchtime pills. Took my after-dinner pills. Took my last thing pills... Everything seems ok, digestive system back to reasonable stability again and finger splits appreciate the warmer weather.

Boules: Played my best yet, winning several ends (although my teams lost both matches by a single point). I've developed a  new stance with weight on the left (and slightly back) leg. This helps to keep my right hip clear of the delivery swing, and my long-standing back problems (one of them very much myeloma-related) seem happy with it.

Backgammon: Won a devastating double game first time, then another double in the second game. After that it was one each, and despite that spectacular start I'm still three games down for the week. That should tell you what a terrible Monday and Tuesday I had....

Later today, back to Springfield for the next round of bloods and meds collection to last me through the next cycle. And possibly a Zometa  drip, although I'm not expecting that before next week.

15/05/21 Circles

Yesterday being a clear day on both of our calendars, we set off for an expedition. Thgere's a shop specialising in boules stuff in Bardwell, north of Bury St.Edmunds, and I wanted some "circles" that are too big to send by post. Those are the 50cm diameter plastic circles that you stand in to throw, and also very useful for practice.

We stopped in Bury St.Edmunds for lunch and a walk around including the Abbey Gardens.Nostalgic because we used to live in Bury and it's where we met. Then on to Bardwell, successful purchase of circles, and back home again. About an hour and a half driving each way, and that's a lot more than I've done since the lockdown arrived. At one point on the way back the car said "Driver Fatigue Alert! Stop and get some rest!" - not easily done halfway along a motorway (the M11). So I kept going and felt a bit fresher after a while. But no doubt that I was getting tired and that nudge from the car helped even though I couldn't follow the advice.

Got home, played online backgammon (this is not a good week for me - only won one game so far), stripped the meat of the remains of last weekend's slow-cooked chicken, used the Thermomix to turn it into a sort f pate with lots of herbs and an egg, then combined that with mashed sweet potato and made patties which fried off nicely. Served them with country veggies for dinner, and that went down well. I've kept the bones etc. which I'll use to make a fragrant herby stock tomorrow - good base for another soup or a risotto. And then the fatigue hit...

Crashed out for the whole evening. Put the TV on in my study and can't remember a thing about it. Had some quite vivid dreams - unusual for me at the best of times, but almost unheard of during a snooze rather than proper overnight sleep.  Now 01:32, post-shower, and I'm feeling wide awake again. The curse of the natural-born night owl!

Not much in the diary for later today - make that stock and then boules at Ongar in the afternoon - so that should help to re-adjust myself after yesterday. After that I've got medical appointments of one kind or another for most of the next week.

10/05/21 (2) Dentist

Todays 'phone consultation with Dr.Ch came in early - I wasn't expecting it until this evening. We were at a neighbour's, having coffee in the garden and meeting her new baby for the first time. We talked about the oral surgeon, his discovery of complete healing of the exposed patch of bone, and the possible return to Zometa. His advice was to go back to it at four-weekly intervals as before. Then I had an email from him saying he hadn't received a copy of the oral surgeon's letter (despite being clearly cc'd on the back of it) so I sent him a scan of my copy. Having read that, he called back to say he thought we should monitor the situation by having a dental inspection every second Zometa drip - i.e. eight-weekly.

So I 'phoned the dentists, explained the story, and - expecting four or six weeks at the best - asked when they could fit me in for the first check.

"Can you come in this afternoon?"

So I did. The dentist found nothing to argue against going back to Zometa, but he did find slight movement in a big filling at the front and a "deep hole" in a tooth at top back right. Fixing these will not be "traumatic" like an extraction (which I would now have to have done by an oral surgeon in hospital), and I have an appointment on 14th June. And another check coming in eight weeks.

No date yet for the first of the new series of Zometa drips. I doubt they'll have time to do it later this week when I'm in for bloods (Thurs 13th) although that's what Dr.Ch is hoping for. Maybe sometime next week.

10/05/21 t-shirt

I just received my free t-shirt for completing the Muscles4Myeloma Challenge during Myeloma Awareness Month (March). Shipped from the USA to the UK at no cost!

09/05/21 (3) Boules, Thermomix, Dex #1

A very pleasant warm Sunday morning at Ongar Boules. Played three matches, my teams lost all three but I won a couple of ends with some good throws. I don't yet have a sufficiently grooved and repeatable delivery swing and release. Have just ordered a set of eight cheap stainless steel boules for back garden practice - the ones we've had for years are plated, they're getting rusty and the chrome is flaking away. Going to the tip, I think. Rain started just as I was packing up to leave, so that was well-timed. I'm definitely feel that regular boules is good for me.

The Thermomix problem is fixed - all it took was turning it off and physically unplugging overnight to let any remaining charge in its electronics drain away. Everything worked perfectly - WiFi included - when I powered up again after lunch.

As for myeloma, dex night#1 was't too bad. Got to bed a little after 2, was awake and up 06:30. Nothing else new.

09/05/21 (2) Off topic, mostly

There are a few pieces of music that have helped to keep me going during this last year. Barbara Thompson's "Stairways" is one of them. She no longer performs as she has advanced Parkinson's Disease. Her husband, drummer Jon Hiseman, died two or three years ago after an attempt to repair damage caused by unsuccessful surgery on a brain tumour. Colin Dudman (keys) had a couple of bands after he left Paraphernalia but is no longer involved in the jazz world as far as I know. Dill Katz (bass) continues to tour with various bands and is in demand as a session player. Sic transit gloria mundi.

Stairways - a ballad that should be far better known than it is - is on a large file that I've put on Dropbox at:

Stairways on Dropbox

and it starts at 01:10:54

The second part of the video is a recording made at the 1979 Bracknell Jazz Festival, all of forty two years ago, Since I've developed myeloma Stairways has acquired a whole new set of meanings for me. If you like it, make the world a better place and tell somebody else about it!

09/05/21 Rain, butter

Constant heavy rain all morning. I started off a slow-cooker "roast" chicken (eight hours on Low followed by fifteen minutes in a hot oven to brown the skin and make it look better. I don't eat the skin but I think it's easier to get it off after a bit of browning.  This is now my favourite method for a basic no-fuss chicken with minimum prep time. I suppose you could throw some herbs, garlic, pepper, etc. in as well... Could also cut cooking time down to four hours on High - haven't tried that yet.

I also made "hard" unsalted butter and lightly salted "spreadable" butter in the Thermomix.

It was still raining.... Should be boules in Ongar in the morning - the forecasts give about a 6% chance of rain. Fingers are crossed, because I enjoy the Sunday morning boules sessions. I've been researching stance, delivery swing, etc.. It gives me things to do and think about that aren't related one way or another to the disease, and that's good.

Dex night tonight. I need to be up and about in time for 10:00 pre-boules breakfast, but on current form that should be no problem. I may well be wide awake and active long before that.

Monday includes a 'phone consultation with Dr.Ch - one of the topics will be returning to Zometa now that the exposed bit of jawbone is resolved. Maybe go to 12-weekly rather than 4-weekly? Lots of people seem to move on to that after being on four-weekly for a while. Otherwise I have no issues to raise, although I'd still like to do something about the tiredness and sleepiness during the day but I think I'm just going to have to live with that like the constipation and the oedema (although that's a lot better now with occasional Furosemide). 

I'll also have to collect one (or possibly two) prescriptions from the GP Surgery's pharmacy, and on Thursday it's off to Springfield for the next set of bloods, next month's meds, and probably another COVID swab test. The last cycle (now in week 4/4) seems to have gone by very quickly. I just hope the nervous week coming waiting for the results will go equally quickly.

Continuing to set things up to work with the new ultrafast fibre broadband, I did the car (which can update itself over WiFi) with no problems at all. Then I tried the Thermomix. Rather similar problems to those I had with the printer. It's now even refusing to do a Factory Reset... I've unplugged it from the mains overnight and will have another go after I'm, back from boules.

08/05/21 Helicopter fumes and MM

The story about the Sea King helicopter pilot Zach Stubbings who developed cancer, presumed to be caused by years of breathing in exhaust fumes from the Sea King's  engine, has developed in a very interesting way. It's getting a high profile because Prince William has spent plenty of hours flying Sea Kings, and there are a good many other examples of ex-pilots developing cancers.

This particular pilot has Multiple Myeloma and has been through intensive chemo and a stem cell transplant.

Conventional wisdom is that the cause(s) of myeloma remain unknown. There is some slight and anecdotal evidence of an inherited element, and statistics show that it is more common in black and asian populations than in white ones. There is no evidence that I am aware of to link it to environmental factors  except a possible slight connection to particles in Sea King exhaust fumes.

It is of course possible that his myeloma is entirely random (like mine, as far as I know) and has no connection at all to his helicoptering.

There's a short(ish) report in the Telegraph and a longer and more rambling, but also more interesting one in the Daily Mail. I haven't yet followed the story any further and AFAIK it hasn't appeared yet in any of the online myeloma places I routinely visit.

Here's one extract from the Mail's piece:

‘Around that time a doctor said he couldn’t understand what had triggered multiple myeloma. It normally affects people, largely ethnic minorities, in their 60s and 70s — not fit, white thirtysomethings. That’s when I began to dig deeper.’

Just one in 50,000 people are diagnosed with multiple myeloma, only two per cent under 40. With time on his hands after his first marriage ended in 2015, Zach began searching on the internet and came across a paper linking diesel exhaust to instances of the disease in firefighters.

He put in a request under the Freedom of Information Act asking if any reports had been done into exhaust fumes and the Sea King. He received the 1999 report and three more followed.'

Now wondering whether the diesel fumes I inhaled while standing on the stern of a narrowboat may have been more unpleasant than I thought at the time... But if so you would expect a high enough incidence of myeloma in canal boaters to have been noticed.

(Stock photo - that's fairly obviously not me at the tiller)

Continuing the process of getting everything working with the new ultrafast broadband now I've got the printer sorted, I did the car this afternoon (it updates itself over WiFi)  but I'm having trouble with the Thermomix. Eventually resorted to a Factory Reset but it wouldn't even do that. It's now off and unplugged and I'll try again in an hour or two. It worked perfectly making spreadable butter this morning...

08/05/21 Breakfast, Panels

Continuing to emerge gradually into the real world, we went for breakfast at The Hare. I wanted to order Eggs Benedict with a Garnett's sausage (a combination I've had there before) but they said "Sorry, we haven't got any  hollandaise."  Hmm. Maybe they make a big batch early on and the saucier wasn't in for some reason. I'm sure theirs is too good to come out of a jar. So instead I had a Full English:

Note the absence of baked beans, which I do not regard as a proper part of an English, and also of black pudding, which definitely should be there! And I couldn't resist taking a bite out of that sausage before the photo...

It was cold on the terrace, but the view was fine:

After breakfast we went to Admirals Park to work off some of the calories, and discovered a new bit:

Not much in the afternoon, but after dinner I attacked the printer problem and this time the re-installation worked perfectly. That's one big problem out of the way.

Yesterday was the start of week 4 of the current consolidation cycle, which means no Lenalidomide for seven days (the dex continues). Dr.Ch always seems surprised when I report no perceptible difference in how I feel for the first three weeks with Len against the fourth week without but that's the way it is for me, no matter how other people do.

Two dex nights coming...

Two or three MyelomaUK Panel requests have arrived in my email. I've completed one survey and said I'm willing to do some video and an interview about "darkness into light" after diagnosis up to the point where a treatment plan is sorted out and things start to look better. On the other hand, I might just play Mahler 5... One of the requests is about the up-and-coming gene therapy CAR-T which is the big hope for effective treatment for people on third or fourth line, and possibly even the long-awaited cure for myeloma. But I haven't got past first line so I probably won't fit the pattern for that one.

Another pack (my second) has arrived from RUDY (the Rare Diseases study I'm involved with). I have to get some bloods taken to be sent off. Unfortunately our GP surgery has decided to stop "routine" blood tests and only do ones ordered by one of their doctors (I don't know why and intend to find out through the Patient Group, another thing I'm on)..So I have to go to the Chelmsford Health Hub behind the bus station which is all very well but involves a few parking problems, or a lot of pointless waiting time if using the buses. And I'm not going on public transport just yet! Patients without cars will have some real problems getting there. I feel a little campaign coming on to reverse that decision.

07/05/21 Lorraine, and ultrafast

Yesterday morning we set out for the daily exercise in the curiously-named Pishiobury Park on the edge of Sawbridgeworth. Google Timeline says we were there four years ago, but I can't remember a thing about it. I'm no better informed now, because the sky darkened, the temperature dropped, and the rain set in. So we abandoned the plan and went to a couple of farm shops instead, harvesting a fine collection of fresh vegetables  as well as a quiche (Lorraine) and potato salad for a delicious lunch. Once we got home the weather improved, ending up with a fine sunny spring afternoon...

The rest of the day was deeply frustrating as I had lots of things I wanted to get done but every time I started something there would be an urgent call to drop it and do something else. The result, of course, is that very little actually got done and I haven't solved my main problem, which is to get my printer working with the new ultrafast broadband. I've uninstalled everything and will try to reinstall later today.

The big question is whether my all too evident frustration was just me getting older and grumpier, or was at least helped along by the myeloma drugs (I sometimes have to remind myself that although I feel basically pretty well I'm still taking two potent mood-affecting drugs), or something else altogether. I tried a trick taught to me many years ago of raising the pitch of my naturally deep voice when feeling down and a bit depressed and that might have helped a bit. Then came the most disastrous day of backgammon I can ever remember.  Lost three singles and a double - and that comes after winning six straight single games earlier in the week...  The intensity of COVID lockdown acts as an amplifier for all these kinds of things, and I remember saying to Sue early in the winter that we would need huge reserves of patience and tolerance to get  through to the spring without driving each other towards the edge of sanity... Thank heavens that the end is now in sight, as long as nothing else goes wrong.

Well, tomorrow (actually later this morning) is another day. Fresh start, and all that. We aim to go to The Hare (between us and Chelmsford) for a treat breakfast and possibly a walk afterwards. I fancy Eggs Benedict with a Garnett's sausage - that's a local outfit that supplies several places with beautifully spiced sausages. I've already sorted out my morning pills into a separate pillbox. And after that, I'll have another go at getting this printer sorted... If I can get a couple of hours free from interruptions.

Sweet Lorraine:

https://www.youtube.com/watch?v=bl8xeunYuJc

 

06/05/21 Saffron Walden and ultrafast fibre

Again, not much to say about the myeloma. Had a letter from the oral surgeon confirming no remaining signs of the exposed bone and firmly refusing to offer any advice on going back to Zometa or some other bisphosphonate, handing that decision on to my haematologist. At the time I was told to do anything possible to avoid more jaw trauma e.g. with another extraction but the letter goes a bit further, saying that any tooth  extraction should be done in hospital under the care of an oral surgeon. I intend to make sure that never has to happen...

We had lunch in Saffron Walden with old friends - first pub lunch for three of us for well over a year, and a very welcome one. There are still plenty of ways in which things could go badly wrong, but it does feel as if we're beginning to see the end of this infernal pandemic.

By the time we got home after that lunch, our fibre provider Gigaclear had been and gone after successfully clearing the blocked duct, and blown fibre all the way through to the nearest street-level cabinet. I found a "Self-Installtion" email (I was expecting a hard copy version through the letterbox), worked my way through it (took all of the evening, having to repeat several stages before they worked), and am now connected at a blistering 268 mbps - and that should improve over the next few days.

At last! It's been a long time coming.

Somewhere I've mislaid my tube of Udderly Smooth. Now that IS a real problem!

Woke up 06:00 to an interesting view outside the back windows - bright sun, fading early morning mist, and a sharp frost:

Update: Found the Udderly Smooth. Just one split causing trouble, on the side of the first knuckle of right index finger. 

04/05/21 (3) COVID vaccine response, etc.

Not a day of great achievement today. Went out to post a letter this afternoon, got blasted by heading into the wind on the way out and lashed by rain and hail on the way back... At least it was enough to get me up to my target for the day.

Had half of my lightly spiced cauliflower, beetroot, and red pepper soup for lunch. It may be a slight case of overkill, but the Thermomix does make superb soup! The rest is in the freezer.

I've just repeated yesterday's abortive do-it-yourself COVID test. Just waiting for the 30 minutes development time to end...

Negative, and no problems this time with reporting the result to the NHS.

I think it's worth quoting this from Lancet Haematology. I first saw it a week or two ago but it's just appeared on the  Facebook MyelomaUK Support Group. It gives some cause for optimism:

Multiple Myeloma Patient Responses to the COVID Vaccine From UK Experience

Over half of multiple myeloma patients develop an antibody response to the COVID vaccine, according to a new study published in The Lancet Haematology. In the study led by Sarah Bird and colleagues at The Institute of Cancer Research in London, Dr. Bird noted that IgG responses were found in 56% of myeloma patients after their first shot, "which rises to 70% when measuring Total antibody." 

While this response percentage is lower than responses seen in the general population, it is still encouraging that the vaccine, even after the first shot, can provide some protection to immunocompromised multiple myeloma patients.

The researchers assessed blood antibodies of 93 myeloma patients following their first dose of the COVID-19 vaccine. The patients had received either the Pfizer (n = 48) or AstraZeneca (n = 45) vaccines. In the study, 52% of the patients had a complete or very good partial response to their myeloma therapy at the time of vaccination. The others in the study included 17% of patients who had a partial response and 29% who had stable or progressive diseases. There was no difference in the percentage of patients who received either the Pfizer or AstraZanenca vaccines. Lower than normal levels of immunoglobulins (called immunoparesis) was identified in 46% of patients. 

From the 93 patients, 56% of them tested positive for SARS-CoV-2 IgG antibodies at a median of 33 days after vaccination. 

Additional findings included the following: 

• Myeloma patients with normal immunoglobulin levels had higher levels of COVID antibodies
• Myeloma patients on any myeloma therapy at the time of vaccination had lower COVID antibody levels (46%) than those off therapy (74%)
• No specific myeloma treatment was related to lower COVID antibody rates
• Antibody rates differed by type of response to myeloma treatment
  • Complete response or Very Good Partial Response (63%)
  • Partial response (75%)
  • Stable or progressive disease (30%)
• In the 8 patients who had undergone autologous stem cell transplant within 12 months of vaccination, 75% had positive antibodies 

The patients who were COVID antibody negative after vaccination were further tested for anti-COVID IgG, IgM and IgA levels. The Total antibody level gave a positive result in 33% of these patients. As a result, the overall positive antibody result (IgG or Total or both) was observed in 70% of the 93 myeloma patients. 

The authors state: 

“Our data suggest lower positive antibody rates in patients with active multiple myeloma, patients with immunoparesis, and patients on any treatment,” the authors wrote. “The only easily reversible risk factor of these is being on therapy, although we did not identify any specific treatment associated with a lower seropositive rate than others.”

04/05/21 (2) Sleep disruption

Fell asleep in my study chair last night so didn't get to bed until something after 03:15. Then woke up about 7:00, couldn't get back to sleep.... just like a dex morning but it wasn't one. Definitely a bit more sleep disruption recently. Interesting that my ring counted the sleep in my chair as part of the night, giving me some four and a half hours altogether. Usually if I nod off for a while that isn't counted. I'm not completely sure how the ring distinguishes sleep from being awake but I think changes in blood flow related to lying down have something to do with it.

A sleep score of 60 is not too bad by my standards. There's a lot more data available, that screen is just a summary.

04/05/21 COVID tests and boules stance

There is some myeloma content in this post. Be patient, we'll get to it. But first...

I did a government COVID swab test on myself earlier. All went well, negative result as expected. Then I went to report the result on the government website. You have to enter the reference number of the lateral flow test thingy - it's printed on it, and there's also a QR code. The print is small, so I used a magnifying glass to read it. Then I took a high-res photo and expanded it. I entered the number and the website said you can't use a test kit twice, that one has already been used. So I did the QR thing and that came up with the same code. I know I was reading the code correctly, which means that somebody else has mis-read their code and entered mine instead.

If that result had been positive, I'd have been called in for an antibody test for no good reason, although considering my immune-compromised and fully vaccinated state the result would have been interesting. Bugs, bugs, bugs... Result: test not recorded. I'll do another one tomorrow. Maybe that's why they include a "spare" in each pack of seven tests.

We had a good walk in Admiral's Park, including coffees (really rather good) and toasted sandwiches for lunch at the Central Park Cafe. Activity targets well met.

Boules. The conventional stance is with both feet together inside the circle, or (for a right-hander) with the right foot ahead of the left:

This man shows the feet-together stance as well as the crouch. I'm working on the crouch but have a long way to go to make it work for me. However, my instinctive stance is standing with left foot ahead, against all convention. Had a long discussion about this with a couple of other players last Sunday. I explained that I  have issues with both legs - left one had that huge osteolytic lesion and plasmacytoma at the start of my myeloma (see? Got there!) and right one had Achilles tendon surgery. So I think I'll stick with what feels natural for me, whether other people like it or not.

03/05/21 Dex #2 was better

Dex #2 was a much better night. Slept well and woke up with that absolute certainty of not going back to sleep at 06:40. That makes something over four and a half hours, which seems to be enough for me these days. We haven't yet decided where we're going today.

Finger splits are much improved - probably a combination of (gradually) improving temperatures and the Udderly Smooth cream. The few that are left are in the final stages of healing and no new ones have appeared (or re-appeared) for a week or so. I still take gloves with me for anything more than a walk down the garden but tend not to use them most of the time. The improvement in everyday life is out of all proportion to these small but intensely annoying splits.

03/05/21 Dex and Boules

Dex night #2 coming. Nothing particular to get up for in the morning, so hoping for rather more than two hours sleep!

Played boules yesterday morning - three proper matches and one fun/practice one. It takes me at least one match to get my eye in and start playing some decent throws. Have also entered the singles and doubles competitions - finals day (should I get that far) is in September. More realistically, I expect to be eliminated from both in the first round... Be that as it may, this has done a lot for my gradual emergence into the real world, and the discipline of regular sessions on Sunday mornings and Wednesday afternoons (although not this coming Wednesday when I have another commitment at a pub/restaurant in Saffron Walden) will give some welcome structure to my weeks in the absence of live music. Very pleased that we stumbled onto Ongar Boules. It's a plus both for COVID and for Myeloma.

Later today, if the weather is even half decent, we'll make a little expedition somewhere for the daily exercise. Yesterday I comfortably exceeded my target without a walk - it's surprising how much good walking up and down a boules piste can do!

02/02/21 Dex, dex, dex...

Went to bed 02:02, read for fifteen minutes or so, woke up at 04:05, gave up the fight to go back to sleep at 04:45. Total sleep time not a lot over two hours, which is as bad as I've been for quite a while. Possibly my awareness of needing to be up in time for an earlyish breakfast (by our standards) before boules in Ongar may have played a part - I can usually rely on my internal alarm clock whenever there's a real reason to be up early, but this has overdone it.

Back to sunrise photos. Red sky in the morning, and a light frost on the flat roof. Alexa reports 4C oside. Six hours to go until Sunday boules, should be time for it to warm up a bit.

Sun's up:

01/05/21 (2) Marsh Farm

Despite a stiff back from my mowing exertions yesterday we finally made it to Marsh Farm Country Park and then remembered having been there before a few years ago. Certainly pre-myeloma time. Got in quite a good walk along the River Crouch, at a very low tide when we started out after coffee and brownies from Phoebe's Pantry. Just a small food trailer, but all very well organized COVID precautions.

Did some boules practice on the newly-mown (but still rather bumpy) back lawn. Once a boule lands, there's no way of telling which way and how far it's going to go. Good for practising a high lob with lots of backspin, or a "yorker" shot aimed to bounce right on the target ball. Instead of getting better at those I got cold fingers and retired indoors... 

Now going to chop some beetroots....

And here's the result. Ny renowned beetroot and goat's cheese risotto, with parmesan and salad leaves:

                                                                          

01/05/21 Grass and Boules

Cut the grass at the back with the new lawnmower yesterday - first time I've done that job myself for a couple of years. It worked well,  and it can be slowed down to suit my walking speed. I always thought the old fixed-speed one was trying to get away from me, and that was before myeloma days.

Then went to Ongar for a little boules practice and a match. My team lost...

(photo found online. This isn't Ongar!)