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...