Wednesday 9 August 2023

Restricted Airspace

Everywhere you go, always take the weather with you
Weather With You – Crowded House

Another month, but probably not another dose. Plus school holidays and the accommodations that entails

I was walking through the hospital yesteroday and recognised one of the nurses from my stay in ICU. I think I was surprised, more than anything, to have made such a certain identification, from somewhere in the post-coma fog. Before I knew it, I had stopped her and introduced myself. She didn’t remember me (fair enough, ICU is a high traffic environment). I said how grateful I am to them all, and how difficult it is to get an opportunity to say thank you. She asked about how I ended up in ICU. When I told her, she said
“I’m sorry you had to go through that”, and, as we parted “enjoy every day”

I was in the hospital for a few precautionary tests. I’m pretty sure I’m incubating some respiratory infection yet again and obviously I’d like them to make it go away. Yet another course of antibiotics and more tests. I suspect this week's dose will get postponed, about which I care little. My doctor advised me – I had worked this out already – to minimise infection risk by wearing a mask in crowded public spaces. I already do. I can imagine that, as autumn descends, there’ll be significant parts of “public” from which I’ll just have to withdraw. When you've been where I've been, then its hard not to perceive breathing as a precarious and fragile process.

That and the fact that I still have intermittent problems with my mobility (my legs) serves to remind me that my stay in ICU may cast a shadow that I must live under forever. DWP (the welfare bit of UK govt) finally came through with an award for PIP (disability support payments), and although my mobility is better than it was when I filled in the form, I can still see that shadow – of disability and vulnerability - over me.

I’ve been home alone for two weeks, with Marisa and the boys baking in North Macedonia, while I weather the storms of an English summer (I’ve had to sweep fallen debris out of my driveway three times so far this week – and it’s August!) My main emotional reaction to our holiday circumstances – that I’m not safe to travel – is being annoyed, a little angry, at the endless intrusions in our lives.

It’s interesting which parts of our predicament elicit empathy (I don’t need sympathy), and which do not. Travel is clearly not seen as a human right, so we’ve had to fend off a variety of responses we didn’t need. Yes, it’s only one summer… except for all the other summers. Myeloma trashed the summers of 2012, 2018 and 2022. In 2019 we did get away… at three weeks' notice. And of course 2020 and 2021 we navigated covid, like everyone else. If you thought covid was annoying – that’s basically every summer for us for the last six years. Will it be easier next year? No. And yes, Marisa could have made less adventurous, more ordinary, travel plans, except as a single parent travelling, there needs to be something in it for her too. If she was feeling the strain before she left… I put it to you that the destination wasn’t why. And no, the fact that I’ve done a lot of travelling in the past does not somehow make being grounded less of a restriction. Think about it; the opposite is true. It’s like telling a keen cyclist that it doesn’t matter their bike’s been nicked because they’ve already done lots of cycling.

Any which way round. They’ll be home this afternoon. And although I don’t want to curtail their fun, I’ll be very glad to see them.

Update 10/08/23
Family home last night. Yay! This morning, all my infection tests are negative. The dr says this is good news, though since I can still feel something (and indeed she can hear something) on my chest, I’m not sure I agree. If we’d found something, we’d know what we were dealing with. There’s still a few results to come back, so we may yet get a hit. But we may not. The dr is not concerned, so I guess nor should I be. And they’re going to keep a close eye on me while I’m still showing any symptoms - that’s probably what really matters (but it does equate to endless tests and trips to the hospital). This also means I do get a dose of elranatamab today. The dr would tell me that’s good too. I’m ambivalent really - there’s no myeloma to attack… but we want it to stay that way. If only treatment didn’t leave me so utterly immunesuppressed, I’d be more carefree. I read media reports of covid EG.5 “Eris” with some trepidation