Last time around, back in September 2022,  I had been pretty terrified of the radiotherapy mask fitting. But in the end, my memories of that day are so brilliant and beautiful, and never fail to make me smile when I think of it. My brother (and niece) were over from NZ for a fencing competition and it worked out that my bro Jules happened to have a day off from competing on the very day I had my mask fitting, and he very kindly asked if I would like his services as my emotional support human for the day.
My ‘are you sure you don’t mind?’ answer flying the banner of all my fellow over-independents who so easily rattle out a practised ‘I’m fine’ over the often (though not always) more true, ‘yes please, I’m scared and I would really appreciate having you by my side.’ How many times have we denied someone their opportunity to give us the help they want to provide, and we actually want, and need, in the name of ‘I couldn’t possibly impose, or put them out for little old unimportant me’?

But oh, how I digress. So the wonderful Jules came with me and we turned it into a grand adventure of a day! Starting with him meeting me with two delicious coffees in hand, we breezed through the fitting, him taking the requested pics for me, my hands naturally finding themselves in a ‘rock on’ configuration. The techs were brilliant and fun, and it all went smoothly. We then ran around UCL courtyard taking brilliant panorama photos of the two of us playing alongside the Roman pillars before going for lunch and having a celebratory Sambuca shot in the roof garden of a nearby pub.

I hoped that energy would carry through to February 2024, and my second time around, but more fresh in my mind was the memory of my recent debacle of a hospital stay, and the incredibly challenging chemo conditions. They weren’t great at dealing with someone who is completely blind…

But we fronted up for my 9am appointment, the whole Taylor Trio, and were told… they weren’t ready for me.
‘Do you want to go sit in the café and have a coffee while you wait?’ they asked.
‘No, not really, I think we’ll just stay here.’  We were in the zone and focused on getting through it, then being free and able to go somewhere nice for lunch after.
‘Ok,’ she said and turned around to go.
‘Actually, hang on,’ I called out to her disappearing back. ‘How long?’
‘Oh, probably an hour or so,’ she replied.

We decided we would get out rather than waiting, and went into the same UCL courtyard that had featured the last time around, to get a coffee from the coffee cart we’d been wanting to try for a while. The coffee was so bad it was undrinkable. If anyone knows what occasionally makes oat milk go terribly sour when heated and put in coffee, I’d love to know. The coffees went in the bin and we headed back to the basement of the hospital.
Perhaps it was an omen…

By the time they finally got me in, it was after midday,  more than three hours past my appointment time. Long enough to give my nerves time to think about starting a really good party, those lucky things. I’d taken a Lorazepam at around 8:30 am, in the hope it may help pull me back from the jaws of a panic attack if needed. At around 10am, when I still hadn’t gone in or heard anything, I decided to err on the safe side and take a second. By the time it hit 12 and still no word, the anticipation becoming increasingly heavy on my tired shoulders, I weighed up my options and unsettled feeling, and I took a third Lorazepam. I knew it would make me feel gross and disorientated, and I certainly don’t need any extra help in feeling that way these days, the blindness and its complete lack of reference points make it a constant traveller with me, but I know it’s the lesser of two evils if I start to feel panicky. And I must admit I am a slave to the fear of that moment when the terror and panic rushes up on me and there is very little I can do to either stop it, or escape…

But finally, at around 12:30, they called me in, my legs feeling shaky as I willed them to stand, and carry me towards my fate. My left arm linked through Mum’s as we navigated around chairs and through doors, my right hand brandishing my white and red stick that heavenly G had got me all those months ago. We went into the room, and it felt like there were hundreds of people in there with us. Mum told me later that there were six of them, which is just far too many (there were 2 of them last time) especially for someone who is blind, and has already flagged that they’re feeling panicked, and who is about to be asked to take their eyepatch off in front of an audience.

Instead of letting Mum lead me to where I needed to lie, for the mask fitting I had what felt  like a hundred hands all grabbing and pulling me. Even as one of the disembodied voices was trying to explain what was about to happen to me, I struggled to concentrate, as for some reason I still can’t understand, someone else was holding onto me from behind, their hands wrapped around my sides and ribs, in a way so unwelcomely intimate, it made my skin crawl.

Aside from the very handsy viewing gallery, the fitting went quite well really. Mum stayed near and I did fine with the 10 minutes I had to stay with the mask on me as it hardened and moulded to my face. But then came the dreaded scan. They do a final scan with the mask on, in order to check where everything is and plan exactly where to direct the photon beams that only start burning the body at the points where they intersect (including some unknown amount of surrounding tissue, and organs while they’re at it).

They put in a cannula for the contrast they administer during the scan, and interestingly, I actually find I have little recollection of how that part went, I guess it was successful enough, and in the grand scheme of the day, was one of the lesser traumas. They then got to clipping me down to the tray by the mask, with a series of deafening clunks of capture. With each clip, it got considerably tighter, pushing down harder against my face. By the time they had done the third or fourth clip, I was in agony. The hard plastic of the mask, moulded so tightly to my face, was forced down hard, causing so much pain that just kept increasing as the seconds went on. Something wasn’t right. The mask pushed hard against my plastic teeth, my tumour, and other parts of my face and head. It was a scary pain and although I tried to withstand it, no matter how many times they said I only had to put up with it for maybe 15 minutes, the idea of facing that level of pain every day for 6 weeks was unbearable, I was crying and snotting into my mask as I tried to plead with them to loosen it. But they did not want to. There was of course sense to their resistance – over the 6 week period the treatment causes increasing inflammation and the face can swell. I experienced it last time around. The mask got tighter and tighter and they had to loosen it slightly during the 6 weeks so I could keep fitting beneath it. They didn’t want to start with it already loosened somewhat, because what if I needed that wiggle room in a few weeks? But, I implored, I need it now.

Their preferred solutions were… me putting up with it (an impossibility from where I was sitting/lying), or, they suggested, we could try doing it all again. Rewind, go back into the mob and make another mask, hoping that something would be different. What’s that saying – insanity is doing the same thing over and over again and expecting a different outcome…

I couldn’t do it. I didn’t have it in me. I have a lot of resolve in me, a lot of determination, but I could not face it all again. Buying some time, I asked them what had changed since the last time I did this? I didn’t have any of these issues then. They said nothing had changed.
‘Really?’ I pushed. ‘It feels very different. The mask itself feels different. It sits differently on my face And now it feels like it’s warped out of shape in the time it’s hardened. It sits unevenly on my face, pushing hard into my fragile side and leaving space on the other. It’s somehow become uneven.’
They were repeating that nothing had changed, when I heard a single voice floating past me, with the words I’m still not entirely sure why I needed to hear –
‘Actually, she’s right. We changed the materials we make the masks out of about 6 months ago….’
Was it that being told I was right gave me some sort of power in a situation where I felt so powerless? Was it feeling that I had one up on them, I won this round? Because being right about that didn’t change anything. It didn’t get the old stuff back or make the mask fit. But in that small win, I found my resolve. I asked them to make it as loose as I needed it now, and to do the damn scan.

So we did the damn scan. And it was fine. They loosened it enough so that the pain was thankfully gone. The future would be the future and if we ran up against a problem in later weeks, we would find a way to solve it then. But I was pretty sure it would be fine. After the scan was finished, so quick and short that it made a mockery of the preceding palaver, I was asked to wait for ‘The Oncologist’, who they called in to deal with the problem patient.

We waited back out in the waiting area where we had passed most of the long morning. Before long, he arrived and introduced himself (someone new I hadn’t met before).
‘So…’ He said. ‘What happened in there?’
‘Oh,’ I said, wondering if maybe they hadn’t told him anything. So I went to fill him in. ‘Well I think something happened to the mask between the fitting and the scan, while it was setting. Because when they put it on again and clamped it down, it was incredibly painful where it pushed into the right side of my face.’
‘Mmm,’ he replied, and was quiet for a moment. I wondered what he thought he could do or say, really, it kind of just was what it was, But I certainly was not expecting him to say what he eventually did…
‘Have you heard of something called Lorazepam?’
‘What?’ I spluttered. ‘Yes, I know it well. But Lorazepam, which I already take, is for anti-anxiety, and has no effect on pain from hard plastic pushing into and against a heavily cut up face, with a lot of nerve pain already, and an obturator (the plastic that forms a makeshift jaw, teeth, and roof of my mouth) which pushed scarily against the tumour which pushes into my brain, which you are supposed to be treating.’
The insinuation that my real, legitimate pain they had caused was somehow my own fault, and in fact wasn’t real and was actually just a bit of anxiety, being almost more than I could take.
‘Ok, maybe you could try taking some painkillers? Some paracetamol perhaps?’
‘More? On top of my Oxycodone, Gabapentin, Amitriptyline, and yes, paracetamol? No. I do not feel at all comfortable with trying to mask the pain caused by an incorrectly fitted mask that you have clamped incredibly tightly against my already fragile face. And anyway, I don’t think it would work at hiding that sort of pain. Why don’t we just have it clamped less tightly like we did today.’
What could he say I suppose: He just sort of agreed and excused himself, and we climbed back out into the fresh air waiting beyond those hospital walls.

I think we were planning on going out for lunch after, but it was so late in the day by the time we escaped, and I was feeling pretty rattled after hours of that, so we just decided to grab a quick coffee and head home. I was absolutely shattered and my nerves were feeling pretty raw. I found navigating around the pokey café and trying to sit down on the right chair almost impossible. I think Mum and Dad were getting a bit annoyed that I was finding it all a bit more difficult than usual. Manoeuvring tight, busy, foreign spaces takes up so much mental work these days, even on a good day. Even just trying to work out where the chair is facing, and how it relates to the table, and everything else around it. It might look like it should be easy, but when you have no way of seeing the scene or visually checking something, it all becomes very tricky and disorientating, and the best I can do is go slowly, and try to run my hands over everything they can find, trying to make sense of it all,  building up a mental picture and somehow translating it into something I can use. But I managed to sit and consume a coffee. Thankfully one that was drinkable this time.

Then we went to uber home. We’ve  got a pretty good system going now with getting in and out of cars, Mum or Dad open the non drivers side in the back, and I get in first and slide all the way across, When we get out, we reverse it and I put my arm out to feel if Mum has got out yet, then I slide over and get out. It doesn’t always work smoothly, we have encountered cars with dividers in the back seat which prevent me from pulling off the slide over, one huge van thing with sliding doors, and a whole array of different seat heights, some so low I feel like I’m falling. I have hit my head on many a door frame when it’s caught me unawares. But that day, the Uber just stopped in the middle of the road rather than pulling over, and we had to rush over to it. I’ll never forget the day last November when Rosa took me into UCLH A&E, having just been plunged into darkness, and the driver tried to get us to jump out in the middle of the road, and Rosa kindly instructed him to find a spot to pull over, as I was blind and was not going to be jumping out into traffic. He obliged, thankfully. But this time we were getting in so we flurried over. When we got to the car, I realised I had no idea where we were, or which way the car was going. I was trying to feel around to build that mental picture and work out which way I had to sit and face. It might be something so boringly obvious if you can glance at a scene and immediately see what needs to be done, but even the easiest of tasks from my old life have become incredibly difficult now, and simple things often take me much longer to get my head around. So there I was, trying my best to work out how to get into this damn car, with everyone shouting at me, even the driver chipped in with a very (un)helpful ‘just get in the car’, but I just couldn’t work out which way the car was even going let alone how to get in it.
Someone yelled ‘Just go forward,; and I think I tried to, crashing my head into the door frame, and falling scarily downwards…

But I did eventually get in amidst all the anger and confusion, and I went home and sat on my bed and let the tears fall. I was exhausted, and the day had completely run dry my physical, emotional and mental energy reserves. I was very keen to close the door on that day.

The next morning, I woke up with a start, tears prickling the sides of my eyes, and my whole body shaking slightly. It was only 5am, but I knew I wasn’t going to be getting back to sleep, so I fired up my laptop and, in the darkness, (which of course makes no difference to me!), and through a fresh lot of tears, I started writing it all down…