Therapy?

This weekend we were supposed to be off to Croyde (in Devon), to spend the week in a cottage with Sally’s family, and partake in a bit of (attempted) surfing.

When I was diagnosed as ‘relapsed’ a couple of months ago, and began suffering with my back, I adjusted my expectations to the fact I might not be able to do much surfing – but decided instead that I’d spend the time trying my hand at surf photography instead.

Only my ‘brain situation’ has put paid to all that. We’re not in Devon – I am sat in my usual spot (living room, right-hand sofa – with no surf or surfers to photograph). Which is a shame, but unfortunately representative of how hard it is for us to plan anything with any confidence at the moment. But that’s life for now – we just have to roll with it.

So anyway, moving on…

I had my third radiotherapy session yesterday. The last two sessions (since my last post) have gone well, and I haven’t been feeling too many side effects – prior to today just the odd twinge in my head, and I did struggle to stay awake through a film yesterday evening, but that was about it.

Today I have felt a little tired, and had a bit of pressure in my head this afternoon, which seems to be subsiding now – my vision remains unchanged. I have been advised that the radiotherapy itself can make things worse before they get better – so in light of that, I’m relatively happy with my progress so far (when I first drafted this paragraph this morning it read ‘very happy’ – this afternoon’s headache has forced me to edit to remove some of the gloss).

Regarding the actual treatment, I was planning on writing a little about the whole experience, and was hoping I might sneak a photo for the blog. Obviously there are strict rules about what can and can’t be photographed in hospitals, so I thought I might just about get a photo of a ‘radiation on’ sign if I was lucky. However the hospital staff were very obliging, and helped out with the photos (within the rules obviously) – so a big thank you to them for that.

The first session then (Wednesday) was preceded by a chat in the ‘quiet room’ with one of the doctors, covering the procedure, potential side effects, answering my questions, etc. Following this, I was called into a fairly big room, containing a large machine called a ‘linear accelerator’ (shown in the photo below – and described by my sister as looking like an enormous food mixer), and asked to lie on the bench, with my head in the clear plastic headrest. No pillow unfortunately – it seems with radiotherapy comfort is a secondary consideration to accuracy (probably a good thing!).

My latest ally, ‘Mr. Linear Accelerator’

Once lying down, the bench was moved into position under what I am going to call, accurately or not, the head of the machine (the big round bit at the top). What then followed was lots of measuring, prodding, and very precise lining up of my head – the three staff quoting various measurements and medical terms for bits of my head and brain. I knew at the time there were lasers aiding this process, but it wasn’t until afterwards when I saw the photo below that I realised just how ‘Star Wars’ it looked. Once in position my head was taped into place to keep it still, and two black dots marked on my face so that they could see if I moved out of alignment with the lasers.

At this point, with all their measurements taken, the staff had to go away for a while to calculate the dose of radiation required. My understanding is that the dose is predetermined, but they have to calculate how much effort the machine has to put in to deliver that dose, based on the measurements of your head. So I was left alone for ten minutes or so, staring at the same dimly lit ceiling tile, trying to keep my head as still as possible. After a while I felt like I was beginning to hallucinate, seeing various patterns coming towards me out of the ceiling tile – which was interesting.

‘Ben And The Machine’

Eventually the staff returned, checked I hadn’t moved, and explained they were ready to begin the treatment. At this point they left the room, and the head of the machine rotated round to the left side of my head. There was some beeping, followed by a buzz while the radiation fired for what seemed like twenty or thirty seconds. After which the head of the machine rotated round to the right side of my head, and repeated the beeping and buzzing as the radiation fired from the other side.

I’m not really sure if I feel any genuine sensation when the radiation actually fires – each time I have had a vague perception of a pink light, and smelt a hint of a sterile, cleaning fluid type smell in the top of my nose. Whether these sensations are genuine, or imagined, I really have no idea – with my head taped in place I can’t tell if there is actually a pink light in the room or not!

The sign outside the room, just as the ‘magic’ was happening…

Once both sides were done, the machine returned to its normal position above my head, the staff returned, and I was free to leave. As I left the hospital I really couldn’t decide whether I felt ‘normal’ or not – I don’t really feel ‘normal’ at all at the moment given my vision, etc, so it is difficult to distinguish any immediate effects of the radiotherapy from my current feeling of being out of sorts generally.

The subsequent two treatments were an altogether quicker affair, as there was no need for the pre-treatment chat, measurements or dose calculations. It’s just turn up, get in the machine, get zapped, and go. I do find it a strange form of treatment — I’m used to hospital visits involving being more actively ‘interfered’ with (blood tests, operations, taking medications, having cameras inserted into places you don’t want cameras inserted, etc). It seems odd to just turn up, get in a large machine which buzzes at you, and then leave – but there you go, life recently has been full of new experiences.

We even took Saskia with us on Thursday – she proved a hit in the waiting room, brightening the place up, raising plenty of smiles, and playing some tunes for the other patients on her ‘My Baby Piano’ app on my phone.

After the treatment we managed to go into Canterbury for a few bits and a bite to eat in Tiny Tim’s cafe. While in town we saw my Macmillan Nurse Specialist (who has been an immense support since my initial diagnosis with stage one melanoma five years ago) manning a stand in the local shopping centre. This week happened to be ‘Sun Awareness Week‘, and as a result she had the unenviable (but incredibly important) task of trying to hand out suntan lotion and educate passers by on the dangers of sun exposure – while standing in the rain. I salute her commitment.

Although she did liken my current appearance to that of a ‘hamster’, so maybe I’ll reserve judgement… (I say that in jest – to be fair it was an entirely justifiable comparison, and I am rapidly progressing along the well known ‘animal / obesity’ scale towards ‘hippo’).

So there we go – that’s my take on radiotherapy. I think I will leave it there and post this now, as this post has been in draft form for about three days, and each day I have to go back and amend ‘today’ to ‘yesterday’, ‘no headache’ to ‘headache’, etc. So I am going to hit post quickly before anything else changes… now.