It’s only been a few days, but it seems like a very long time. This has been such a weird time – so much so that one of things I did yesterday was to program the wall display in the kitchen to add the day of the week to the clock modes – we simply have lost intuitive grasp of it because of the linear nature of what’s happening and because it’s difficult to track when there isn’t the structure (other than Edson’s school movements!) to know without looking at your phone to check what day it is. Anyway….
Had a difficult few days physically and emotionally, but had a great visit from Rachel the palliative care nurse yesterday. I’d been dreading it (for no good reason) and wanted to get out that I feel I’m just failing everywhere. I know things are getting worse physically and there’s no avoiding that, but all the medication and combination of what’s happened recently combinined with a few other things have completely destroyed my confidence and I’ve started to recede into a hole of my own making. This is not good, but T was ready to convey this had I not done so.
But I got it all out, and Rachel was her usual excellent self. I cannot say enough good things about her. Long story short in terms of medication, I’m now taking a slow-release version of morphine so rather than get a ‘hit’ which wears off and experience peaks/troughs in medication (and the inversely proportional pain response), I’ll get more consistent relief over the course of the day. This has only been in place since yesterday afternoon (so I’ve not seen a full cycle), but this is the first night’s sleep where discomfort hasn’t woken me up in weeks (I’ve been having a syringe ready for the middle of the night). I know I’m never going to be pain-free again, but I will be pain-relieved a lot better, it appears. And it’s a very low dose which allays my fears of constipation and growing tolerance of it which were paramount for me and probably stopping me feeling better a lot of the time.
Emotionally, I’ve got into a hole of becoming a bit house-bound. This has been tied to the pain (as getting up to do anything hurts for a bit and I feel what’s going on), but also has just been gaining momentum which is not a good thing. And it’s strongly tied in with a physical side-effect of the steroids I’m taking – that I’ve lost muscle mass, particulalrly in my legs. This has terrified me as I feel like I’ll be a bag of bones in a week. It’s been quick and noticeable over the last 2-3 weeks. But it’s a known side-effect of the steroids (yeah, not anabolic steroids, so they won’t make me deaf*), and I have exercises to do to combat this and maintain my mobility. We’ve looked into other things, including a manual wheelchair to mean I can use it for support and be wheeled back if needs be. This is a massive wall for me. It’s like the end. But a manual one is not like getting in an electric (which is what we were looking at) in that I feel if I ever get in one of those, I’m never getting out again. So, in short, I will be going out more, and possibly registering more than 1 bar of yellow on my watch per day (yes, really, it’s been that bad).
This is the first morning I’ve woken up where the positive feelings I often have when I get up in the night have not just evaporated when I get up. How long this will last, I do not know… but there is a plan and the first steps yesterday went well. I went everywhere in the car with T after the meeting and did more in terms of getting out etc than in a long time. And that needs to continue for as long as possible.
One thing that I am finding difficult is that my sense of taste is changing immensely. I’ve always liked bland/subtle things, other than really strong bitter coffee/marmite. And now none of that is enough, it’s like chemo taste but much worse. This again is a side effect of all the meds I’m on (still got until the weekend on the antibiotics) and sounds like first-world-problems, but having the joy of food that T makes be so enjoyable has been one of the things that’s ensured that I get enough calories and nutrients in. She’s always tweaking, experimenting and changing. Ended up having something much spicier than I normally would last night (my lips were a bit numb) as I could actually taste it. Sweet seems OK, but other stuff is unbalanced, and my morning Nespresso coffee which I have loved for years just doesn’t taste anything like it used to.
But that’s a minor moan. I’m going to approach today best foot forward and see what it brings.
Thanks for reading.
*this is a Running Man reference!
