29/06/20

Haven't had a decent walk/roll for a couple of days, mainly because of the weather. Every time I find the drive to go out, it's either raining already or I go outside and decide it's going to rain pretty soon. Some of the "showers" have been short but far too heavy to get caught out in. Mustn't let myself get into bad habits of finding excuses not to get out...

I've felt generally low-energy for a while now, possibly a side-effect of the Lenalidomide - although I still perk up around midnight, as I always have done. If I do anything around the house during the day, such as a spreadable butter making session yesterday, I tend to need an hour or so of dozing in my chair downstairs afterwards. Stamina is definitely not what it was...

I've been thinking about my experience of myeloma and treatment so far, compared with so many stories I read on the Facebook group and elsewhere. I have, to be honest, had it pretty easy so far. The worst was the effect of that 6cm hip lesion on walking, and that was before I had the myeloma diagnosis. After that, I suppose it was the severe constipation and the glycerine suppositories - luckily I learned a lot from that experience and have been much more able to keep on top of it in the current "consolidation" stage  - and I'm on only half the dex dose, which must help. If there's a reason why things haven't been worse, it must be early diagnosis and start of treatment. The radiotherapy fixed the hip lesion problem wonderfully well (I still have a suspicion that one day I'll need more of that for the 4th rib lesion), and we got the paraproteins coming down before they had much of a chance to interfere with liver and kidney function. All my blood numbers are good, with the exception of a slightly low lymphocyte count. Other people don't get diagnosed until much later, by which time a lot of irreversible (or nearly so) damage has been done and their blood numbers are all over the place. Not to mention their crumbling spinal columns.

It's still an incurable / terminal cancer (without some very big advances in e.g. gene therapies) and I know it's going to get me in the end, unless something else happens first. I could get run over by a bus, or decide on a one-way ticket to Switzerland before I get too ill to deal with that. But what I'd really like to do with the rest of my time is to show that early diagnosis is immensely valuable for this disease, and that the seriously ill phase can be pushed a long way down the line so there's plenty of quality of life left before the crunch comes. And on that cheery note, goodnight!