A bit of glitter: never knowing what to do

Dignity, always dignity, as Cosmo Brown would say

Photo by Joseph Corl on Unsplash

I know. You must have thought you’d got rid of me. And yet, here I am - as welcome as a fart in a spacesuit as Billy Connolly might say.

Finding, once again, that while the spirit is willing, the flesh is weak, it’s been a little while since I’ve been able to write. I’ve been very unwell - a rolling river of delights, including several bouts of sepsis, a few mind-bending weeks in hospital on a ward with several dementia patients who had a very loose grip on reality, as did I by the end and a pretty long stay in our local hospice, where I am now. I have been incredibly fortunate in being able to stay in the hospice rather than the hospital: they found a bed for me because while I have had sepsis and been very ill, it was something they could treat rather than something they couldn’t and therefore I’d move onto end of life care and probably go home. It’s a bit complicated, but take it from me, it’s a good thing. One of the issues that caused sepsis is kidney stones - not that much fun at the best of times, they caused a huge infection and have now caused an antibiotic-resistant infection which means I have to be in a private room (not so bad) and barrier nursed (a bit weird as I’m kind of shut away like Typhoid Mary behind closed doors and everyone has to wear PPE when they come near me. It also turns out that I will never get rid of this infection, it will always be lurking somewhere in my body and it can cause all sorts of issues. At the moment it’s causing some really odd things to happen to my body.

However I’m now going to have laser surgery on the kidney stones this week, all being well, on Tuesday. And the hope is that they’ll be able to do that early in the morning and then bring me back to the hospice to recover for a while and then - fingers crossed! - I’ll get to go home, hopefully this week.

There are a lot of caveats. The surgery itself isn’t particularly dangerous if you’re healthy. I don’t know if I’ve mentioned it but I am not that healthy at the moment. There have been weeks of back and forth about whether to go ahead with it and it could still all be cancelled at the last minute for quite a few different reasons. It’s quite risky and we’ve had to decide to put our trust in the consultants - I figure there must be loads of paperwork if you kill off a patient so they’ll be pretty careful so they can avoid extra admin. But even with that in mind, it carries with it quite a bit of danger so it’s also come with making sure that my affairs are in order and while we’ve been trying to make sure we’re organised on that front, it’s hard not to find it quite confronting. Safe to say I’m not super excited about it and I’ll be very glad if (when?) it’s over.

Something that has now been thrown to the forefront is care, and carers. I wasn’t able to move around much before this bout of sepsis and one of the most awful things that has now happened - and I’m really struggling to put a positive spin on this - is that I can’t walk. I literally cannot get out of bed, cannot stand up. Not, oh I’m a bit tired, I can’t quite get to the commode - nope. Not, oh I just need to build up these core muscles then I’ll be fine - nope. No ability to stand at all. I need full care at the moment. Obviously we’re hoping that this isn’t permanent, but it may be, and we’re having to get care packages in place which address that. We’ve tried a hoist, which was quite exciting, so that’s probably what we’re going to use for now. But I don’t want to have to be hoisted out of bed for the rest of my life.

There’s been a lot of news recently about assisted dying. I was impressed with how rational and calm the recent parliamentary debate was for the most part and there has been a lot of very thoughtful, interesting and careful debate and think pieces around it, which I have been grateful for. For the record I am EXTREMELY pro-debate and pro-assisted dying; I don’t have much time for the slippery slope theory but I do think it should be extremely robustly debated. It’s been very good to have so many resources to consider my own position on the debate - which is not necessarily that I want to use the right to die, but I do very strongly want to have the choice. Some assumptions are difficult to debate - using rather cracked stats which are not really relevant (you’d think they were rounding up disabled people with tasers in Canada) which I find annoying, for instance. A letter a couple of days ago in the Guardian, which read thus: “However heartfelt the convictions of those interviewed and well-argued their case, I’m not convinced that they’ve seen the recent BBC documentary Better Off Dead? by Liz Carr (still on BBC iPlayer) and carefully considered her perspective.” Why would you be convinced they haven’t seen that documentary? If you’re invested in the debate, of course you’d watch it, even if it didn’t chime with your point of view (for the record, I’ve seen it, thought it was brilliant, fundamentally disagreed with it). It’s condescending for both sides to assume the other won’t have investigated all angles.

I’ve seen and felt for myself this last month in the hospice what it means to be heading for death. I need 24 hour care just now, and despite the unbelievable kindness and extraordinary hard work of the nurses and healthcare workers who look after me so well, it’s humiliating, terribly painful and very, very difficult. I don’t want to die right now but I can see a time where I really would not want to go on. There is a very high risk that I might be left completely debilitated, unable to speak, move or do anything for myself. I don’t want that. I want to choose to avoid that. But at the moment we haven’t even had a proper debate to decide if we should be allowed to choose that. With that in mind, it’s probably too late for me - though there’s a slim possibility it might not be. I do find it hard to accept people not wanting to join the UK debate - you might be happy (or think you’d be happy) dying in the most horrible of circumstances, but I’m not that thrilled about it.

Anyway. Wish me luck, I’ll either see you on the other side or I won’t. I’ve got some things I’d still like to do so am hoping to hang on a bit longer, but hopefully as someone who can still express themselves and maybe do some very exciting things like, ooh, stand up. I’ve got plans, guys. Big plans.