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.

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9 Comments

Filed under Battle with Melanoma

9 responses to “Therapy?

  1. Claire & Phil Leslie

    Amazing post Ben – a real insight to what you’re going through and the photos are incredible – and by the way I agree with Kat about that machine looking like a huge food mixer!! Sorry you’re not feeling great today but the headache is probably the radiation waves doing their job! Loads of love to you all from all of us xxxxx

  2. Chris and Ivan

    We’ve only just got back from the beach after an evening walk. No consolation we know but the waves were about 10 centimetres high and not at all photogenic – real ankle snappers! You just focus on catching the radioactive ones! We think of you all the time and admire your courage.
    Lots and lots of love from all of us.

  3. Lindsay Macdonald

    Fab post…! I’d really like a kitchen big enough to fit that giant food mixer in, I’d be like a lil pixie up to my ears in cake all day everyday! On a more serious note… MacMillan nurses really are the best and today you have reminded me of this, thankyou Ben… We can all do our bit (and generally a bit more as well)… All the best Ben =)

  4. june and colin

    Hello its your over seas connection.:)
    when i started reading your update today, i noticed you mentioned Croyde, My wife June lived in Woolacombe. She is a full on surfer.. Infact coming from california and NOT knowing how to surf myself,( I played baseball). When i met June, she asked if i surfed!? I said no, but i am NOW!:) so she taught me to surf and for the last 24 years we surfed all of cornwall, Newquay fistral beach and watergate bay, and then when we moved to california, we have surfed the whole coastline into mexico…today, we continue surfing but im more into business now, but June stlll hits the waves at least once a week. I just wanted to share that with you, since you mentioned surfing… About taking photos of surfers, i have a friend who lives in bournemouth, if you google- Ricky Bedding surf pics bournemouth, you will see pictures in the Bournemouth Echo and Wessex surf club etc etc… He really good at pictures ..He had a website, but for some reason i cant seem to find it….:(
    I thank you once again for being so open about all your stuff…I think its very healthy to share and talk about things..I know for a fact here in america we have loads of therapy for people who want to share stuff . Who on earth wants to hold onto everything and keep quiet!! I do know the culture is very different in america compared too europe.. but its all good:)
    ok Big Ben, i shall wait for the next update my good buddy…
    Your over seas connection x

  5. Martyn

    Hi Ben,

    I’m so sorry to hear about all these troubles. I call the grandparents every couple of weeks (as you probably know I’m up in Scotland now) and he happened to mention this blog a couple of days ago. There’s certainly a lot to read but after a few hours I’m now up-to-date! I’m glad to hear Saskia is getting on well.

    As Nicola put in her message (in the About Me section), it would be great if we could visit you, Sally and Saskia. Nicola put June 18-19 as a preferred date. Obviously we all understand that this can change at the last minute and all depends on how you are feeling.

    A quick up-date on us, I’m now in the first year of university studying Medicine, so I actually understand some of the medical things you’ve been talking about. Unfortunately, being in the first year I don’t actually know anything that you would find useful! The weather in Scotland is dismal. As they say, there are only two seasons in Scotland – Winter and June. Life is otherwise very busy up here.

    Again, I’m so sorry to hear about everything, and thanks for writing the blog to keep us updated.

    Best wishes to you, Sally and Saskia.

    Martyn and Kayleigh.

  6. Karen Mac

    This is a great explanation of cerebral radiotherapy Ben!
    To clarify,as you so rightly said it was National Sun Awareness week.
    When we set out my colleague Val said,”why are we going out to promote sun awareness on a day like today”.I replied because the British Association of Dermatologists have said Sun awareness week should be this week presumably to coincide with pre sunny weather!!!!
    We did however have alot of laughs offering FREE sunscreen in the rain.
    The bonus was the Edge family visit which was epic as we got to meet Saskia,and it gave us encouragement,and after they left I attacked so many teenage school children and ranted on about sunbeds etc.

    They probably all went home and told their parents about the mad women in Whitefriars shopping centre,offering sunscreen in the pouring rain.If they did then maybe,just maybe it will stick in their minds and change their habits! Well done Ben you are an inspiration!!!!!!
    lv K (The Macmillan Nurse)

  7. Ron and Nancy

    We hope the weekend and holiday today have given you a nice break from the treatment. All the best with the next two days of radiation.
    You write so well and give a lot of insight into your new experiences. Your blogs are truly amazing!
    We send much love to you, Sally and Saskia and continue to surf our positive thoughts across the pond to you.
    R&N xoxoxo

  8. Angela and John

    One Huuun-dred and Eight-eeey as they say in the world of darts!! not that I am a follower or secret player, of course! Amazing Ben, 180 people are now following your blog. The news of how well you tell your story is spreading. You provide us with a real insight into your hospital experiences – with the assisance of your photographic support team – fantastic! Hope this week’s treatment goes well. We will be thinking of you. With love and support as always from your Worcester fans – Ange and John x x x x

  9. Vic x

    Just sending you love Ben. May the force be with you! Vic xxxxx

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