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.