Friday last week saw me get the 15th day of radiotherapy under my belt (or, more accurately, into my head). As of Friday, only 15 days to go; I’m halfway!

I’ve been mulling this post for a while and reaching this milestone seemed like a perfect opportunity to try to write it.

I want to avoid both narratives of self-pitying and of triumph over adversity. There’s a bit of everything going on at the moment and simplistic stories don’t capture the full experience. Worse, they make me feel unseen.

I want to write this post to explore what it is that I’ve found surprising about my treatment so far, in the hope that if someone stumbles across it, they will find something to help them if they are in the same situation.

In the last two weeks before the radiotherapy began, I had started to get a depressed and unhappy. I felt like I was in limbo and was very keen to start zapping the mutant cells on the basis that sooner must be better.

Waking up on the Monday of the first day of treatment, I was suddenly very happy and excited, in a positive mood. A real transformation from the previous week; now treatment was starting and it felt like I was going to be doing something positive however hard it was. Naively I thought it couldn’t be that hard

I went to my appointment thinking I knew what was going to happen. I’d already had the thermoplastic mask made. This is a mesh made of plastic that is put over a person’s head at relatively high heat so that it melds against their features and hardens as it cools (see picture below). This mask goes over my head and holds me tight against the radiotherapy bed. It stops me moving so that the focused high energy rays can hit their mark and blitz fewer healthy cells.

Patient pinned to the bed by a thermoplastic facemask. Picture Credit: amoebaswarm

As part of this prep on mask making day, I was also put into the radiotherapy machine to have my head scanned so the doctors could map my brain and accurately plan my treatment. The radiotherapy machine was silent, so much calmer than an MRI.

I arrived at the radiotherapy centre for my first day of treatment. As I was getting ready, one of the radiotherapists mentioned that a common side effect of the radiation is that people see high intensity lights. They said that this is nothing to worry about. They asked if I had any questions. Given what I thought I knew from the preparation, I knew what was going to happen, right? So much so that I was adamant that I was fine. Can you see where this is going..?

I hopped up onto the bed and got into position. The mask was fitted. It had obviously cooled further down from when I’d last worn it. Now I couldn’t open my eyes or speak, and I was properly tightly pressed against a curved block on the bed. This isn’t a gig for claustrophobes.

The radiotherapists checked I was ok. Thumbs up from me. They left the room; the bed pushed me into the machine. I lay there for a few minutes of silence and then the bed moved back out. I knew the radiotherapy didn’t last very long and so waited to be released from the mask.

The radiotherapists didn’t come…

and didn’t come…

and didn’t come.

My anxiety started to rise. Suddenly I realised that obviously (OBVIOUSLY?!) someone had burst into the centre and had kidnapped the radiotherapists. I was strapped to a bed and was next. The horror movie trope had nothing to do with my state of anxiety and the mask I was wearing…

I breathed deeply and managed to tell myself that this was stupid; I’d count two minutes before trying to release myself. One minute 30 seconds later and the bed started to move back into the machine.

Once it was there the noise started. It sounds like large blocks of rusty iron being rubbed against a massive cheese grater while someone tries to muffle the noise. Either that or a muffled jackhammer.

I’d expected the beam to be coming in from one point aiming at my right temple where the tumour is. But the noise was moving 180 degrees from left to right behind my head. I started to panic again, why was this? How were they avoiding my healthy cells if the beam was coming from all over? What was happening?1

It was at this point that I fully came to terms with the fact that radiotherapy was both going to be a therapy and something that would harm me. I lay there strapped to the bed, eyes closed and started resenting the machine for the harm it was causing.

And then the lights started. They covered the whole of my vision and looked like white blocks of extremely, vividly bright light. It’s an oddly amazing if disconcerting experience; I’d prefer to see the northern lights.

Within about six minutes the machine stopped and I was back out. The radiotherapists were back into the room quickly and took the mask off. They checked I was ok and then that was it, I was off. The whole appointment only lasted about 20 minutes and although I knew it wouldn’t take long, I think this unsettled me further. It was such an important thing for me, it didn’t seem possible that it could be over so quickly.

None of this, or what follows, is a criticism either of individual staff or the the NHS as a whole. They and it, as I keep saying in my posts, have been brilliant. This time particularly the radiotherapy consultant and the radiotherapists in the room. If they hadn’t been so calm, efficient and professional then the whole experience would have been much worse. I trusted them and was able to push my fears down as a result.

What happened to me in that radiotherapy room is a reflection on a life lived that’s normally felt comfortable; I’m mostly able to take what’s thrown at me. But in the machine all that was suddenly being called into question.

The second day was awful. The righthand side of my head itched slightly and felt like it had had far too much sun. The machine was damaging me and I had six weeks of this. I left feeling more anxious, frightened and slightly angry about what was happening to me. All aimed at that inanimate machine. It wasn’t a healthy feeling.

All through this, and every morning I was meditating. It really helped me at the height of my anxiety in the machine on day one.

On day three, the app threw up a ‘loving kindness’ or ‘metta’ meditation. This is a type of meditation that is spiritual in nature and even a few years ago my rational scientifically trained self would have rejected it scornfully.

But it came at the right time; on day three I went back into the machine and redid the meditation, making the machine the focus of my loving kindness. I lay there and forgave the machine for the harm it was doing me and thanked it for the therapy it was offering me.

My relationship with the machine still isn’t easy, but it is a much more peaceful co-existence. The fear, dread and anxiety that had plagued me on the first Monday and Tuesday have been replaced with a broad feeling of calm acceptance of what is happening to me.

My expectation going into radiotherapy (and the milder chemo regime I’m currently on) was that my major challenges were going to be physical.

On day three I remembered how happy I was on day one, excited and relishing the thought that treatment was started. But that after 20 minutes of treatment that mood had transformed into challenging negative emotions.

This realisation that I was going to find the psychological impact of the treatment very hard was a surprise and a challenge. I don’t want to brush away the physical impacts (I’m doing that with my hair anyway…), but the psychological impact is bigger for me, at least at this halfway point. Who knows what the next exciting steps on this adventure will be.

I started to talking to another patient in the waiting room about the psychological impact of the treatment. They agreed wholeheartedly and we both gained support from each others’ experiences. I hope this post might help anyone who is expecting physical affects only to prepare for the broader impacts of the treatment.

I’ll finish by confirming that I’m fine. I had another of my regular conversations with the radiotherapy consultant (did I mention how brilliant the NHS has been). Everything I’m experiencing is within expected bounds and the treatment is going as well as one can tell at this point.

1 March 2023

1 Yesterday I finally asked about the moving noises. It turns out that the sound isn’t that of the high energy beam, but rather the screening moving in and out so that the beam is directed to where it needs to be. I really should ask questions, the machine was immediately slightly less anxiety inducing.