31/07/21 Nothing out of the ordinary

I can't let July go by without marking it in some way, pretty poor summer that it's been so far. Nothing out of the ordinary for the last couple of days - some rain, some boules, lots of pills. All as normal. Trying to think up some questions for Dr.Ch on Monday so that we don't waste a face-to-face  consultation - after all, I'm sacrificing a boules morning with Epping for that!. I had to chase up Sarah his secretary for the usual GP letter and sleep apnea referral - those have been done now but should have been done ten days ago...

That's about it. I can't think of anything else worth writing about at the moment. I'll be back in August, hopefully with something to say.

UPDATE: Did Pill Organisation after breakfast, then we went to Great Notley Country Park for a good walk and a light lunch - egg mayo and cress sandwiches, very good! Activity target back up to 400, but got there OK with a bit to spare. 

Finger splits! I've got a new one. This time it's o the inside of the first knuckle of my right middle finger. No idea how it got there, but it stings nastily if I get anything into it. Post-shower ankle oedema is bad again and my weight is up, suggesting some water retention. I need  a Furosemide or  two but later today is out because of boules (unless rained off, which is not unlikely) and Tuesday is out because I have to go to Springfield Hospital in the morning.Wednesday we have both the burglar alarm man coming (long story) and the new cleaners, so not ideal. Will have to take one when I get back from boules,I suppose.

29/07/21 Rain. Again.

A wet morning nade us abandon plans to go to Great Notley Country Park (no shelter) but we went to Oaklands for a walk twice round and lunch during a break from the rain. And then had a downpour on the way back home...

Have started work on my collection of diagnosis stories from the facebook group, anonymising, getting consent to forward outside the group, and etc. before sending them all to MyelomaUK where I hope they may do some good. Another couple of fairly uninterrupted days to go before I've finished the job, I think. And one way and another I don't get many of those...

I hear that the grass carp video went down well!

Back to single senna until Saturday evening. Things seem relatively easy to manage at the moment, haven't needed a Fybogel or Laxido for a few weeks.

About to start Week 4 of the current consolidation cycle - the one with no Lenalidomide. So it's going to be back to worrying about the next set of bloods (due August 5th), Zometa drip, and all the rest that happens at this stage, including another face-to-face with my haematologist.

28/07/21 Constipation management again, and grass carp

Hard to believe that we're already nearly into the third month of this rather strange summer....

The constipation management plan worked again - no problems during the evening session at Tower Petanque. I played really badly at first but got it together later on and played some good boules winning a couple of ends, and I was on the winning team in both the matches I played. So not too bad overall. Nothing more until possibly a friendly session at Ongar this afternoon, so I took double senna late last night.

I really hate this need to constantly manage the bowels, but it has to be done. Otherwise it would be the glycerine suppositories again, and I really don't want to reach that point another time,although I'm prepared for it.

Some activity on the facebook myeloma group has led me to re-think my decisions about transplant, COVID, and consolidation treatment, and it has confirmed my decision to defer transplant for as long as possible, if ever. I don't want to go through transplant and a year of recovery unless it's an absolute last resort, and I don't see that coming. I hope...

I've been trying - without success so far - to get some video of the sparks generated by boules, which are only visible when it gets dark - and Tower Petanque has  floodlights which allow play to go on long enough. Instead of  that, I have some video of the big grass carp in our big pond. He's put on a lot of weight since we moved him there, and he's doing a great job of keeping the blanket weed under control.

I've asked Sue to forward this video to the twins who visited recently and were fascinated by our ponds. Thy didn't get to see the big grass carp, so they should enjoy this.

27/07/21 Constipation management

My constipation management strategy worked well enough for boules at Hanbury Gardens (Epping) to be unaffected - although there are decent facilities there if needed, which isn't true of every piste! Nothing else now until 20:00 this evening, which should be plenty of time for last night's double senna to have worked its way through.

Bad journey to Hanbury - I tried the direct route avoiding the M11 and M25 but had several "Road Closed" signs and diversions to deal with. As a result I arrived nearly half an hour late but was quickly accepted into a game  and played well enough, winning a few ends, to get some respect from the other players. And that is what I want. Again, a very friendly and welcoming group of people. The good thing I've found at all the different places I've played at is that nobody gives a d*mn about who you are or your background, all that matters is that you like the game and how good you are at it.

It's been a long night on the facebook Myeloma Support group, and I still haven't got round to new member applications. I think they can wait until tomorrow, or maybe one of the other admins will deal with them before I'm up and about, which won't be too early after a couple of days of morning boules. But it is a dex night, so anything might happen...

25/07/21 Thunder, lightning, fatigue.

Played at Ongar this morning without a drop of the promised heavy rain. Friendlies only, Brian not being available for our last remaining doubles match. Afterwards,nbeing a bit in the right  direction already, I dove to Epping to investigate the Stonards Piste where the Epping club play on Saturdays (my one sworn no boules day!). Small piste, very thin gravel over a hard base with lots of big stones. Looks very much like a place for the high lob and not much rolling...

Constipation management plan working OK so far. Now I have to get past tomorrow morning at Hanbury Gardens....

The heavy rain began almost as soon as I got home mid-afternoon. Lots of thunder and, presumably, somewhere some lightning. Very very frightening... Despite that,I fell asleep of course.

I'm trying to find a way to explain that this "fatigue" isn't just being lazy, and that breaking out of it is very very hard to do. Some people talk about not being able to get out of bed in the morning, no matter how much a part of them wants to. You just can't raise the will to do it. I'm the same, although for me it's a chair and later in the day. You just have to wait until something changes and you feel a bit of energy coming back.

I think the thing to remember is that even though I'm "in remission" - insofar as that can ever apply to myeloma - it doesn't mean that nothing is happening. The body is still fighting the cancer, keeping it suppressed, and that is a huge drain on your energy and resources. And I have to deal with the potent drugs that I take every day - another big drain on resources. One sleep a night just isn't enough to recharge and recuperate. "Remission" isn't a stable static state for myeloma, it's a dynamic one where you have to balance the positives of exercise etc. with the dark side that is always lurking in the shadows, ready to break out again. And that completes the sermon for tonight.

24/07/21 (2) Pill organisation and storage

Had rather a lazy day today, encouraged by heavy rain in the morning. Did the usual weekend jobs, including Pull Organization - I've got my time down to 45 minutes. 

The problem is that with Sue's meds as well as mine plus the general household medical supplies, they're gradually taking over too much cupboard space in the kitchen. I shall have to think of something ingenious.

For some inexplicable reason my ring has already (21:07) recorded my activity target as comfortably met, even though the most active thing I've done today has been watching the Olympics. Some things aren't worth arguing about.

BP 108/72 - happy with that.

24/07/21 Dore's Kitchen

Nothing new today. Went to Dore's Kitchen in High Roding for lunch as Russell is leaving soon and we haven't been in since lockdowns began. 

That's Russell facing the camera,and the man who looks like Marco Pierre White on the right is, in fact, Marco Pierre White.

Then cut the grass at the back - too hot and thoroughly exhausting even without doing the grass-collecting this time. Inevitably fell asleep afterwards... Much cooler in the evening, and likely to be enough rain to interfere with an plans we might make to go out later today. So maybe I'll concentrate on cleaning  the cat fountain and the never-ending paperwork pile instead. Weekend bills paid already.

Pleased to say that all bodily functions are working well - just in time for me to mess them up again in preparation for Sunday and Monday mornings. Ankle oedema still there but reduced, fingers are OK.