So, how am I doing?

Reading just the titles or skimming these entries, it’d be easy to think that everything is hunky dory – that I’m enjoying an extended holiday or early retirement. But that’s not really what’s happening. It is what’s happening on one level, but for reasons of my health, and front-loading these kind of activities was a deliberate strategy on my part – my health was only ever going to get worse.

First up, this will not be a hugely positive entry, so I understand if you want to stop reading here. And secondly, I’m not going to be totally graphic, but I’m going to try to give an honest idea of what’s going on.

Right now, while I’m writing this, it’s first thing in the morning – the time when I would usually feel at my best. But that’s no longer the case. I will typically wake up feeling OK, but there’s an area of pain on the right of my abdomen which hurts when I breathe deeply, so if I yawn then it’s pretty painful. Sneezing is avoided at all costs, as that will be 8/10 on the pain scale. But aside from that, I just feel done in. Out of energy. By the time I’ve got up and got dressed, got downstairs, had the pills I need before breakfast and then emptied the dishwasher (yes, it still needs doing, and yes I still want to be the person to do it while I still can), I need to sit down.

I need to wait between taking my pills and having breakfast – about half an hour. So this usually means catching up with any emails (I get surprisingly few new, particularly as I’ve unsubscribed from every advertising and product / industry emails I was ever in), and often watching something for 15 minutes. T makes breakfast and has always been ‘single task’ so converstation during that time isn’t an option. We usually talk in bed before getting up anyway, so that’s OK. Having said that, she’s just come over to give me a kiss while I’m sat here, so what do I know?

After breakfast, I’ll have a coffee, and this usually means I have a bit more energy and feel a little more normal. That combined with the painkillers usually means I’m OK to do something light and easy – something most of us wouldn’t think anything of normally, such as maybe go to the tip (as a passenger) or do a bit of programming. Mentally I’m still pretty much normal and I’ve been working on a project to keep me busy (a display of info for the house, such as events, EV charge status and the piece de resistance, what days the bins go out, looked up on the council website)…

… but it has a few bugs to squash here and there so I can do that if I feel up to it. This has been immensely useful to me over the weeks as it’s an involving task (I’ve always found programming to be a flow state) so it takes my mind off what’s happening to me for long periods at a time; sometimes I’ve been a little too obsessed with it, but I’m mostly over that now.

Compare this to maybe a month ago and it’s significantly different – then I was doing full days of DIY work – getting things done, fixing stuff, moving stuff and generally dealing with years of cruft that has built up. But right now I just don’t have the energy. I’d love to be able to spend today fitting the furniture we bought for the camper van (there’s not enough storage so we bought some overhead lockers), but I think that there’s next to zero chance of it.

I’m still eating pretty normally – sticking to three main meals a day plus snacks – and I’ve not been sick. But I am taking anti-sickness pills as without I feel generally sick all the time. Been taking these for about a month or so. My weight is pretty constant, which is a good sign. But I need to eat at the right time – there’s no slack or room for leaving it a bit, or I fall off a cliff, energy-wise.

Going to the toilet has become somewhat different, however. I was pretty ‘clockwork’ before having the Whipple’s procedure, and definitely wasn’t afterwards. But after about 6 weeks I got things pretty much into the original rhythm. But that’s now no longer the case. One of the real downsides of what’s going on is that I often don’t really know what is going on. I certainly don’t know what’s happening inside me, but also I don’t always get a lot of signals in terms of knowing when to go to the loo. And when I do get the signal, it’s urgent. I mean really, really urgent. So that has been difficult a couple of times, particularly while we were away. Generally it’s manageable, but sometimes it catches me out.

As I mentioned in the post about chemotherapy, I used to be fit, active and capable. I am now none of these things. I used to walk every morning before work – typically 30-40 minutes, first thing. There’s no way I could do that now. And there’s so much I’m just not capable of doing any more. It probably doesn’t help that I was someone who did everything himself if it was possible to do so – hence fixing my own cars, and building my own extension. The last time we tried anything like that I fitted two paving slabs with the help of a friend (who did most of the heavy lifting) and it still wiped me out. And that was weeks ago.

Each time I start feeling worse, I don’t know if it’s ‘disease progression’ (as I was bluntly told by a Macmillan nurse with the bedside manner of Harold Shipman), or if it’s that I’m under the weather from an infection that takes me longer to kick off, or if it’s just that I’ve over-done it with too much for the last few days – quite possible given that I was in Ibiza last week and had 6 late nights. There’s just no way of telling. I definitely don’t want to just sit on my arse all day and watch TV (which is what I did yesterday as there was nothing in the tank), but it’s increasingly looking like it’s on the cards.

I know there’s no way out of this. I’m doing all I can to keep OK for a long as I can, and when I was originally told in January I would have bet anything I wouldn’t make it to May, let alone late May and having done the things that we’ve done. But looking at how I am now compared to how I was a year ago leaves me in tears every time. And there’s worse to come – and only worse to come. But I have an appointment with my counsellor later and also an aromatherapy session today (yes, this is part of palliative care, and a very nice part), so hopefully I’ll feel better later.

So, in short, going downhill. I’m not in a huge amount of pain, but I am on painkillers all day. I’ve got a couple of new places which hurt that didn’t used to, and of course I’m concerned about them. But as with all of this, there’s nothing to be done about any of it, other than pain management. It will run its course, as will I. And hopefully it will be as painless as it can be.