Does anyone else feel like we might be stuck in the Bermuda Triangle? Or in that achingly boring-as-all-hell movie Groundhog Day? Or maybe this is purgatory; forced to keep cycling through the radiotherapy process forever more. Déjà vu is strong, and it doesn’t feel at all cute (for some reason I’ve decided déjà vu should be cute. Maybe just everything should be cute. From now on. I decree it).

Ok so you guessed it… Radiotherapy Mask Fitting strikes again. And it came out as… less traumatic than the second time, thank goodness, but more than the first. On the way there, I told Mum that if they asked again if students could join in this time, I would say no. I rehearsed a nice little spiel explaining how it’s just too much for me to have loads of extra people in the room with me now that I’m blind, and I would rather not, if at all possible. I’m glad I rehearsed it and was therefore ready when they asked again, but the best answer I could manage was to just burst out crying, saying something along the lines of a very rambling ‘no, please, no. I can’t. No, sorry, no.’ All the best laid plans… But it was fine, and the attendees were kept at the minimum, with just the people who actually needed to be there.

Before going in, they told me to go and get changed into a hospital gown. As I’m always on the verge of tears at the moment, they accompanied my attempt to explain that I don’t wear hospital gowns. It might sound ridiculous, but managing what I wear for appointments is incredibly important to me. I hate the dehumanising nature of the hospital gown, turning us all into the blank slate patient to be treated, rather than a real living human. And dressing in my most favourite and fabulous clothes through all these shitty appointments is a big part of what gets me through. My important little pretence that I’ve got any control over anything. But apparently the gown was non-negotiable. When I pointed out I’d never needed one before, they informed me that this mask was bigger, longer, more serious than the last two I’d had. Well, they kept that quiet. Great.

We went in, me having lost the dehumanising battle, but still wearing my pirate boots at least. I had two main techs. We’ll call them G for Good, and S for Spiky. G remembered me, asking as soon as I went in whether I still wanted The Beatles playing. Yes, I did thank you very much.

First they moulded the bit that went below my head to hold it in place. They put the stuff underneath me and started pressing it into shape around my head and neck. It felt actually somehow relaxing. Massages are pretty much my biggest fear, I hate them. But I thought that maybe for a moment, I briefly glimpsed why people might want one. Then it was time for the front part. They pulled the gown down so it was barely covering my chest anymore, then stretched the warm tight soft shell over my face and neck and halfway down my chest, then it got a bit weird. S was still poking at it and pushing it quite firmly against my face long after they usually walk away and leave it for 10 minutes to harden. She was very focused on my one little eye, pushing really hard into it nearly the whole time. I tried to say something, it was getting quite painful with how hard she was digging her fingers in, but was told I mustn’t speak while it was setting. I managed to stick it out, but they asked at the end how it had gone and how I felt.
‘Um yeah ok,’ I said. It was a bit tight on my eye though, it was actually quite painful. Someone seemed to be pressing quite hard against my eye a lot.’
‘Yes that was me,’ S interjected.
‘Ok… I’m not sure I’ll be able to withstand the pain of it every day for 3 weeks, sorry.’
‘That’s fine,’ G added. ‘If you’re happy to go in it a little longer, we can reheat and reset just they eye area.’
‘Yes, that would be good I think, thank you.’
So they reheated it, pulled it back on me, started clipping it in, and I yelped.
‘Too hot! Too hot! It’s burning me!’ G rushed in to get it off, while I heard S in the background saying ‘but it needs to be warm when it goes on…’
‘Not that warm!’ I exclaimed. Definitely not that warm.
‘We need to get it back on while it’s still hot,’ she was saying over and over again while I pleaded that they just wait a moment. I could quite confidently assure her that burning my skin was not a requirement of getting a mask fitted. Not my first rodeo. And thankfully G was on my side, and after short pause, it went back on, and no more burning took place, and the mask was made. Still, S could not keep her fingers away from my eye and she still spent the whole time pushing her fingers into it, just with a little less force than the time before. No idea what she was up to – in my first mask, they cut the whole eye area out so I could see through it. And the RT was focusing much lower down this time anyway. Baffling.

Then of course it was time for the post-fitting scan. And of course, once again, the new mask material they’ve got over-tightened during the setting process, and as soon as they started clipping me in, it pushed right into the base of my throat, closing my airway, and rendering me unable to breathe. Once again I explained they would need to loosen it, once again they told me they couldn’t. I tried to explain that depriving me of all oxygen for 15 minutes/day was unlikely to be particularly useful, but S wasn’t having a bar of it. No, protocol dictates that it can only be loosened at some later point. I tried to explain that if I couldn’t breathe, that later point would never get the chance to exist. I tried to explain we loosened it immediately last time around so that I was able to wear it and that was absolutely fine. It had caused no problems whatsoever, and allowed me to actually wear the mask. But S was steadfast. Then I heard G’s voice floating over from somewhere further away…
‘She’s right, you know, we did do that last time, and it wasn’t at all an issue…’
And so finally, it was agreed: the mask could just be clipped a little less tight, I could be allowed to breathe once again, and we were able to get the scan.

The new mask was noticeably more extensive and restrictive than the previous ones I’d had, which wasn’t a particularly enjoyable surprise, but the length of treatment (3 weeks, 15 sessions in total), was half what I had endured previously. I would do it. I would find a way to get through. As we were leaving, G followed us out. Her brain had clearly been working away In the background.
‘I think if you have a robe or dressing gown or something similar of your own, you might be able to drape that across you so that you don’t need to wear a hospital gown. Or maybe a top that is completely shoulder/neck-less and easy to sort of pull down and rearrange around the mask. It should be possible to make it work.’
I smiled and thanked her for having continued to think about something that could have felt a bit silly to someone working in a hospital every day, but was actually quite important to me. I told her that I had also been thinking about it, and had in mind a very cute (by decree, remember?)  lacy black (of course) crop top that I should just be able to slip the thin straps off for the zapping, and it should still stay up and covering me where needed. Like in so many of my stories and anecdotes and updates, the kindness of these wonderful humans shine out with a ferocity that knows no bounds. And for that, I am forever grateful.