30/04/21 Lawnmower

Nothing new on the myeloma front again, just ticking over on the routine pills, trying to keep the constipation and the oedema in balance, and getting on with daily life.

Late morning brought a new delivery of our Swiss Water Decaffeinated coffee - I get a pack every three weeks to keep the espresso machine well fed. Despite the packaging our postman goes into raptures over the small of the coffee... 

A little later I got a delivery of three new "Competition" boules and a few accessories. My old set of six cheapo ones had started to rust badly after spending too many cold damp winters in the workshop and although they're sort of OK on the lawn, just a couple of matches on the hard surface at Ongar caused the chrome plating to start to chip and break away. Three is all you need to play singles, doubles, or trebles, as long as the other players have their own. My new ones are slightly smaller and lighter than the old ones, which I think will suit me better. Will try to get down to Ongar this afternoon to give them a try and maybe play a match or two.

Also picked up a new electric-start lawn mower from Len's Lawnmowers near Writtle., Went on to Writtle and had a bit of a walk in  Brewhouse Hoppit, a strangely named piece of land next to the Writtle Co-Op:

One side is bounded by the (rather small) River Wid, and I found
this attractive spot:

I might have found that quite interesting in  my coarse fishing days.

And here's a very posh Bentley in the Writtle car park...

9/04/21 Reviewing the situation

 Again, nothing new on the myeloma front and I was in a reflective mood when I started this, so...

I'm a few days short of twenty months since my diagnosis. We might have got to that point a few weeks earlier, but I still had a very early diagnosis compared to most myeloma patients. That, I believe, is the main reason why my "journey" has been a pretty easy one, so far.

How has it changed my life? Well, over those months I've taken far more pills and had more injections (not to mention blood tests) than I've had in the rest of my life. I've had to become used to regular hospital visits and accepting that for the rest of my life I'm going to be totally dependent on medical services. That hasn't been too easy for someone who used to believe in "the fewer pills the better". 

Dex nights can be difficult but on the whole I've learned how to cope with them. I haven't - as far as I know - had much of the drastic mood swings etc. that dex can cause. If I ever go up to a much bigger dose it may become a bigger problem. Dex also probably causes the skin thinning that leads to the finger splits that have caused me so much trouble this year. Again, I'm gradually finding ways to mitigate that problem.

Then there's the constipation and the water retention (causing oedema) that both require daily watching and adjustment of the treatments. It's getting better - long time since I had to resort to the glycerine suppositories - but can still have a big impact on daily life, especially in the mornings while waiting to see if the treatments have worked or, in the case of diuretics, waiting for the effects to wear off. For that reason, I try to avoid any commitment that means leaving the house before late morning.

Tiredness, fatigue, falling asleep at the wrong times. It's a pain. Almost any level of activity beyond the sedentary needs half an hour or more asleep to recover - and even then my energy levels are often too low, especially when it comes to standing up and starting something. I'm much better when I've got going. This seems to be connected to a general slowness of movement. My reactions, as far as I can tell, are as good as they ever were (possibly not the fastest) but movement - esp. if whole body rather than just one bit - is definitely slower, and causes much frustration in others. Walking speed is way down on what it used to be.

Walking - I'm fine around the house or on familiar grounds with no walking aid for short distances. Beyond that I still need either a stick or a walker, mainly for support and confidence. I'm acutely aware that with lots of bone lesions still present I'm at high risk of broken bones if I should fall, and that would be a complication that I don't need.

It's hard to disentangle the myeloma from the infernal virus, even though I haven't had it. For instance, before this all began I used to do two, maybe three, evenings of live music most weeks. If the virus had never appeared, would I still be going at that rate? Well, I kept it up from diagnosis in September 2019 most of the way through to the first lockdown in March 2020, despite the really bad walking for the first couple of those months. But my feeling is that I would have had to cut down to maybe one a week because the combination of the disease and the treatment just leaves me too drained to cope with more. The unfortunate implication of that is that when I reach the end of my personal roadmap (at least partially successful vaccination for immune-compromised blood cancer patients, and two effective treatments) I'll never get back to the way it used to be.

As for the future - well, at worst it looks pretty bleak. My blood numbers start going up again, second  and third line chemo are less successful and give me only a few months each, then we get into the later lines where the side-effects of the drugs start getting to be as bad as the disease. In two or three years time I'll be seriously thinking about the one-way ticket to Switzerland. Better that than the final stages of any cancer.

On the other hand, I might go on for years in the current remission, and even more years in second and third line etc. with tolerable side-effects and a decent life-style. By which time I might well have reached my  normal life expectancy anyway. Myeloma is such an individual and unpredictable disease that there's just no way of telling. All I know is that I don't have a particularly aggressive form of it. And of course there are new treatments coming along all the time...

Enough of these reflections. Time I posted this before I start depressing myself again, or decide to delete it.

28/04/21 Change of plan

Not a nice day at mall - cold, bleak, windy, rain coming later. It'll be worse on the coast. Marsh Hall Country Park trip deferred until a better day, we'll probably end up at Oaklands again...

28/04/21 New chair

I haven't blogged for a couple of days, which is unusual. Nothing significant has happened in relation to either Myeloma or COVID, I haven't been out for any walks (but I have comfortably met my activity targets). I've just been busy with stuff at home - fixing punctures, sorting out online banking problems and replacing my old office chair in my study (it was largely held together by duct tape after at least fifteen years of faithful service) with a new one. That was more complicated than it might sound because of the need to completely disassemble the old one in situ before moving the bits downstairs and into the garage before the final journey to the tip. Here's the new one:

This one has an extending footrest and reclines much further back than the old one did, so even better for falling asleep in here...

Several features of medical interest here - infra-red thermometer, two blood pressure monitors, pack of lateral flow COVID tests,. box of alcohol swabs, couple of weights for exercise (and under-desk exercise bike almost hidden behind the chair). And the tangle of electrical spaghetti on the right is nothing compared to the one on the other side that you can't see!

Later today we plan to go to Marsh Farm Country Park in South Woodham Ferrers on the estuary of the River Crouch - should be some interesting (and flat) walking there. But there is some rain forecast so plans might change if it's worse than expected.

25/04/21 (2) Boules, puncture

Got up early, partly thanks to the dex, and watched some Netflix before an early breakfast. Shadow and Bone has some promise, I think.

Got to Ongar for my 10:00 appointment with the secretary of the Ongar Boules Club. I'm now a member.

We stumbled upon this during an Ongar walk a couple of weeks ago. We've had a set quietly rusting away in the workshop for years and very occasionally got them out on the back lawn - certainly enough to destroy the zip on the case, now held shut by a length of cord. I think I'm going to have to buy myself a new set but there's a lot to think about - diameter, weight, surface texture, hardness, pointer or shooter?

Partly I wanted non-strenuous exercise (it got me past my activity target, just), partly an extension to social life as things relax, and partly some structure to my life which can too easily become just taking the next mound of plls and waiting for the next blood tests. It's all very much "friendly" but there are occasional matches with a couple of other clubs in the area. I gather that in the last match with the twin town of Cerizay in France, we won! I don't know if that will continue post-Brexit - I hope so.

I don't see a return to live music for some time yet, but there is possible good news of Pfizer developing a treatment (pill) for COVID-19 by the end of the year. That would mean pushing the trials through at an unprecedented rate! Some time ago I decided that my personal roadmap back to live music would be vaccination demonstrated to be at least partially effective in immune-compromised blood cancer patients, and two effective treatments. Evidence for the first one is still weak but looking brighter, and the second would be halfway there if the reports can be believed. And that reminds me that I must do another government antigen test this evening.

Back to the boules. Several good chats with other players (almost all of a certain age) and I played two matches, winning three ends for the team, losing one, and making no useful contribution to the others. Not a bad start, I think.

While there I got a puncture in one of  Walter's front wheels during the not much more than 30m distance between car and pitch. I took a walker because not knowing how many people would be there I didn't know if getting a seat on one of the various benches would always be easy, and the walker gives me a private one of my own. Probably no need to bother in future, but too much standing about can  trigger the evil nerve pain in my right thigh (long pre-myeloma) and I did feel it trying to start up a couple of times. When that happens the only way to stave it off is to sit down.

I fixed the puncture this afternoon (I hope) - another of those tiny and viciously sharp thorns which was very difficult ro remove from the tyre. But 12" tyres aren't easy and the only way to get the inner tube back inside is with thumbs. I reckon that even with Udderly Smooth to help, I've put my thumb split and a couple of fingers back a fortnight at least. After being so careful to keep them warm with the sheepskin gloves all morning...

25/04/21 Warley Country Park, dex, and bloodstains...

We went to Warley Country Park in Brentwood, although it turned into rather more of an afternoon walk. We've never been there before (opinions differ on this, but I'm sticking to my guns) and we had a lot of trouble finding the right place and parking a short walk from the entrance:

(Photo found online, not one of mine)

Activity target well and truly met. Did the weekly clean of the cat drinking fountain, so  all weekend tasks completed. Also made an 8-hour slow cooker chicken casserole which went down well.

Did the Pill Organisation Thing after dinner because I have a 10:00 appointment in Ongar this morning, which wouldn't leave enough time either after breakfast or before lunch. More about that appointment in the next post, if it works out well.

Dex night tonight. 01:01 and I'm feeling wide awake, although there's nothing too unusual about that, dex or not. It all depends on how I feel in another hour...

Finger splits are fighting back. Despite it being a very warm day, one on my left thumb is opening up again...

Rescue cat Blue wanted some time with me on the bed. She was in a bit of a playful scratchy mood, and got me in the right hand with a claw. I didn't realise I was bleeding until I was back in my study and found blood on a couple of pieces of paper. What I didn't realise (the lights were out) is that I had also left several pound coin size bloodstains on the duvet cover. Thanks to the cat, I'm in the doghouse. I've done what I can to remove them, and won't know how successful I've been until the morning.

23/04/21 (2) Blood test results

The results are good again: Paraproteins still undetectable, Free Light Chains all in normal range, red cells, platelets and some of the white cells below normal but not enough to worry about under the circumstances. After the last couple of months of playing around with the dex and len in the hope of getting a handle on the tiredness/fatigue (not very successful!) it's really good to find we didn't open up a loophole for the beast to come back through.

Inevitably I was a bit too quick to announce victory over the finger splits. A couple have started to open up again today, including the one on the right index fingertip which makes a lot of things rather difficult. I'm applying lots of Udderly Smooth and with luck that will stop them getting any worse. Seems crazy to have to wear gloves outside in these warm temperatures, but maybe that's what I'll have to do for a while longer.