It’s very much a case of up and down at the moment. I can feel that I’m getting physically worse (or rather was yesterday as there was pain where the tumour is), but this has come and gone in phases before. Certainly it feels different physically, which is not good, but I know that is how this will go, and just have to face it. Which is easier said than done.
So, I took a little more oromorph than usual, and everyone is telling me that is OK, so that is OK. I’m still finding it difficult not to think of it as being a slippery (and constipated!) slope, but that all seems to be just me. And there isn’t any point in having pain relief available if I don’t make use of it. There are millions of people who would kill to have access to the medication that I take on a regular basis, without charge. Universal healthcare kind of should be a human right, and I won’t go on a politcal rant here!
I think we’re starting to make food progress which is making mornings better, plus I’ve definitely been waking up a bit dehydrated so while my sleep is being broken up into 3-hour chunks, drinking each time is helping. Taking in more fibre (after reading and watching a lot about guts after antibiotics) is really needed. And trying help my immune system as well, after some sage advice. But in between a couple of smaller, fibre-rich ‘mini breakfasts’ (porridge for one, bran flakes for the other), I’ve been having a breakfast sandwich which T has been making – sausage or bacon, with an egg and some cheese. And some amazing bread from a place where you order a mystery bag and get what you get. Bread was difficult, but if it’s fresh and in moderation (maybe a slice-and-a-half per day) then that seems to be OK. And it tastes incredible. It’s so good to be able to still enjoy food, I just can’t express it. Plus it makes me want to eat, and this is hopefully giving my body what’s needed to keep running as well as it can.
But I’m getting very stiff and weak. It’s becoming a little harder each day to do physical stuff, and takes a little more mental resolve to give myself a pep talk before doing something – a bit of a “come on…” and then it’s OK. I’ve still got stuck joints in my back, despite T’s best efforts with the massage gun (and she does a great job with it), I’m not loose enough to click them out. And after watching This is Spinal Tap last night with everyone (yes, I’m playing the card for movie viewing!), I was really, really stiff and it was difficult just to get to bed. Once I was there, I was not going anywhere. But I’m OK in the night, so it was probably a case of bad sitting position as well as the underlying stiffness.
So much of this is a mental thing. Running to have to stand still (certainly looks that way with my heart rate a lot of the time!) is tiring. So I’m not looking to any sort of time horizon other than effectively today. Now and next. If I look at too much, it’s overwhelming. And I’m still really, really teary. Some ‘nothing’ thought or phrase can set me off, particularly if it’s that I’m doing a good job. I just can’t hear that without going to pieces, and I have no idea why. Sometimes I just have to wave T off because she’s being lovely and kind and supportive but it just gets to me and away I go.
I’m so lucky to have her here, she’s still being her incredible self. Always refining what’s going on food wise, looking for better ways to do things, to get things tastier, to make it work.
But one day at at time. That’s the only thing I can do at the moment, so that’s what I’ll do.
Thanks for reading. It really means a lot.
