Over the last few days I’ve been pretty up and down. While I felt I’d been making progress in some ways, and getting a bit more energy, the pain in my right side had been getting worse, and I’ve had a couple of days where mentally I’ve felt like I did when I was having chemo. No energy and really down. I’d see people on TV doing normal stuff (like standing up and having a chat!) and be jealous. That sort of thing – feeling helpless, useless and listless. No point in carrying on.
Fortunately I had an appointment with my palliative care nurse a few days ago and she asked (and indeed pre-empted) some of what I’d been feeling with unnerving accuracy. This is good in a sense (because she’s experienced and has seen this before) but to me bad in a sense (as I’m clearly getting worse and the inflammation is a sign that my liver is starting to struggle, which no-one wants to hear).
But… help is at hand with a course of steroids which should reduce the inflammation which is happening and hopefully make things more pleasant for me – which is the name of the game at this (and indeed all future) points…
It’s early days yet, but I took the first dose on Sunday and proceeded to have a much better day than I’ve had since getting back from Ibiza – both physically and therefore mentally. Had a great afternoon visiting a couple of friends and felt OK throughout aside from a very long bout of hiccups, which may be a side-effect (more data is needed on this). But I’m hoping this trend will at least be sustained if not continued upwards as I’d deeply love to make the trip to Scotland starting next weekend, as everything is booked and paid for.
Monday was better as well – not night and day but definitely an improvement. I’m hoping this will at least stem the tide, if not improve matters more. I’ve even done a couple of useful things today, so it can’t be all bad.
Tuesday followed a similar pattern – some improvements (helped by a visit by Lucy the Macmillan Unit Arormatherapist whose work has made me feel relaxed and positive, which is an incredible thing at this time). I’m definitely prone to hiccups and shortness of breath and this was a pattern I noticed when taking the same steroid during chemo, so it looks as if that’s a side effect for me that I’ll just have to put up with. When it starts I need to stop talking or eating and control my breath a little better and usually that will help. But if it takes hold then it can take an hour to stop which is less tolerable. But still better than not taking them.
But, with only a single cup of coffee in the morning, I was done by 9pm and needed to go to bed. I’m definitely running out of steam, which is what I was told would happen, but it’s still something I’d hoped would be further down the road (of course!) than it is. I don’t know how quickly this will progress, but I know what this means for me.
