30/06/21 Dex and Tower Petanque

Slept well last night, despite the dex. My ring tells me that my "latency" (time taken to fall asleep) was 0mins and 0secs - and warns that may be a sign of various things including not getting enough sleep...

I have a feeling dex may take its revenge tonight (dex night #2). We'll see.

Bowels seem to be in a fairly good state after the Sunday deviation from standard routine. 

Good Boules at Tower last night - I think I play better later in the day. Not many people were there, possibly because of some football game - and we started with a shooting workshop led by the very French Davide. Very useful for me, because it's not the strongest part of my game.  Then played two games and was on the winning side for both. I feel I'm able to hold my own against most of the players there. Have also entered for the Doubles in the Eastern Region competition - will be good experience if nothing else.

As Tower play on into the dark under floodlights, fascinating to see the sparks as one boule hits another, and even sometimes when it pitches onto the gravel. A whole world of physics that you're completely unaware of in daylight. Sometimes you see better in the dark. 

There are several Ians at Tower. So I am now identified as Ian The Hat - never go out without one, even at night. 

On the fatigue front, things have been rather better. Didn't fall asleep during the day or when I got home after Boules. Possibly the dex is responsible.

29/06/21 Deep Heat, fatigue

Pleased to say the Deep Heat worked splendidly. Have ordered some more from Up The Jungle as I'm nearly out of it.

A very quiet day today, not least because the effects of 40mg of Furosemide made it impossible to go anywhere, even with my collection of emergency toilet cards. Did the usual few small jobs, fell asleep too much, watched some tennis, played some online backgammon Somehow beat my generous activity target by 8%, maybe because of a bit of exercise with the 2.3kg weights before I had my shower.

The fatigue, if that's the right word, is getting to be a real problem - not least because Sue finds it hard to cope with. I get to the point where I just can't stay awake, and when I wake up from that I just can't find the energy to get going again. I'm assuming that it's mainly a side-effect of the Lenalidomide. It doesn't hit while I'm actually engaged in doing something, which suggests a partial solution, but I get ordinary-tired and I need to take some time out to cope with that, and the fatigue-tired sneaks in...

Will talk to Dr.Ch about this next time (July 5th). One obvious thing would be to cut the Len dose down from my current 15mg to 10 - not sure if it comes smaller than that - or move to alternate days. But that would increase the risk of the beast coming back... Maybe I'll drop him an email a couple of days beforehand to give him a chance to think about alternative approaches.

15mg x 7 days comes to 105g for the three "on" weeks. Moving to 3 x 25mg would be 75mg - not too much of a drop. Might be worth suggesting.

Whatever happened to the days when a GP would prescribe a "tonic" or a couple of weeks vacation at the seaside and some long healthy walks?

28/06/21 Right hip and Deep Heat

Not a particularly good day at Ongar Boules yesterday morning, as my right hip was in one of its awkward moods and I felt a bit unsteady on my feet throughout. Brian and I didn't have a match, so I played a couple of friendlies - not especially well - and left a bit earlier than usual. Post-shower I've treated the troublesome area with a generous spray of Deep Heat - seems to do as much good as anything else, and ordered some more from Amazon.

Taking a night off Senna worked as planned - no problems Sunday morning - but I've now taken double Senna to compensate. Staying in today so should be able to cope with any unintended consequences, as well as getting a few domestic jobs out of the way. Might even take a Furosemide...

27/06/21 Heybridge Basin

Another hot day, and we set off for Heybridge Basin. We haven't been there for a while - Sue thinks not since Lockdown#1, I think we've been at least once since then. It was a favourite destination in the days of e-bikes, but not so much now it has to be on foot.

There's a new attraction:

Very realistic model animals in this fake African zoo.

We got lunch from a Costa in Maldon and ate it sitting on the sea wall. Sue had a bacon roll and I had a sausage roll - in the sense of a couple of sausages in a  bread roll. No high-fat flaky pastry involved. CMOT Dibbler, with his eternal cry of "Sausage in a bun!" would have been proud of me.

Got home and mowed the back and side grass (Sue did the rest) before the fatigue had a chance to kick in.. Wanted to do it because next forecast is not too good for the afternoon. OK for the morning, which will be occupied by Ongar Boules.

Made Spaghetti Bolognese (British version!) then did the Pill Organisation thing for next week. No Senna last night in the hope of being OK in the morning. Double Senna planned for tonight.

Life goes on. Remission continues, although I know it will end somewhere down the line. Until then, what can I do? I think the answer is just to keep living, keep involved with the world, keep taking the tablets, find enjoyment wherever I can. And that';s what I plan to do.

26/06/21 One thing and another

Again, little to say on the myeloma front, apart from an admins argument on the Facebook Myeloma UK Support Group about how far we should support fundraising for Myeloma UK (no connection). I'm taking a middle-of-the-road position, but it isn't over yet. Watch out for "The Straight Arm Challenge" - there are hopes that it will go viral like the ice bucket challenge of a few years ago.

Bowels seem to be well on the way back to stability, and the ankle swelling isn't too bad this evening. Ideally I'd take a Furosemide later this morning busy that will be impossible if the weather is decent and we go off somewhere.

Yesterday played Boules with the Rodings U3A - my team was doing not too well until we stole the match with a five-point end. Then home for lunch and back to the piste for some practice with a couple of the Ongar regulars. Followed by the usual fatigue collapse at home...

Fixed - I hope - a long-standing problem with my keyboard where it would go dead for no obvious reason. I eventually tracked it down to a problem with the battery compartment - taking the batteries out, swapping the left and right ones around, and rotating them a few times for better contact usually worked but sometimes not for long. I've got a new k/b (same Logitech model) which is identical apart from a different and tougher-looking spring in the battery compartment. Maybe I wasn't the only one having that problem...

Anyway, installed the new keyboard, mouse, and receiver and everything seems good. Fingers crossed.

Speaking of fingers, the new split on the end of my right thumb is now in the painful throbbing stage.. I blame dex for it.

Just for the sake of a photo, here's my current setup in my study at home, where I'm writing this:

Just the things with screens:

Top row: TV, monitors 3, 1, & 2 for the main PC.

Bottom row: phone, tablet, notebook/laptop, Alexa.

Overkill? Quite possibly. But it makes me happy.

25/06/21 Fatigue

Did a few jobs about the house in the morning, then we went out to a couple of local farm shops for fresh veggies, bought lunch (there goes this week's sausage roll allowance) and had a couple of Rossi ice-creams on the way home as well as taking a walk around the Leaden Roding cricket ground. Then I felt exhausted and fell asleep for too much of the afternoon, woke up for afternoon tea and a bit of boules practice on the lawn, made dinner, fell deep asleep again... I don't know why the fatigue is worse on some days than others (except, perhaps, for dex) but this was a bad one for no obvious reason. And that, I think, is all for tonight.

23/06/21 (2) Hylands

A much better and warmer day - but the last few colder days have opened up a split in my right thumb and another on my left little finger. Seems crazy to be wearing gloves in mid-June, but if that's what I have to do... I used to be safe down to 10C, but probably because of the skin-thinning powers of dex I'll have to up that threshold to something more like 15.

Went to Hylands Park for lunch (toasted cheese, tomato, and red onion sandwich with a bit of salad and too many tortilla chips which IMHO should only ever be used as a carrier for dips). Then went into the gardens in search of some Wisteria that has been in spectacular bloom this year, but arrived at the site to find we were too late - flowers all gone. Nevertheless, a pleasant walk ending with a couple of ice-creams (a mango Solero for me, and a chocolate one for Sue) to try to get rid of the taste of those tortilla chips.

Since putting myself back on occasional Furosemide I reckon I've lost a good 2kg - all fluid retention. Little obvious ankle swelling as I write (22:08) and the looseness of the You-ID-Me medical bracelet I wear on my right wrist suggests that I've slimmed down a bit there as well.

Bowels still a bit unpredictable after the weekend. Took a Fybogel last night on top of the usual Senna, to moderate effect. Maybe another one tonight, I don't think I'm quite at the Laxido stage yet.