Author Archives: Ben

So yesterday I completed my course of radiotherapy – and the good news is that so far it doesn’t seem to have turned me into a withering wreck.

To be honest I would struggle to isolate many side effects from it at all. Although it has to be said there is a lot going on with my body at the moment (chemo, steroids, painkillers, the disease itself) so it’s difficult to know what’s what. Also I was told that the action of the treatment itself continues beyond the last dose, so there is still time for things to develop.

All I can say so far is I have not really felt any worse during the treatment than prior to it, and probably actually better.

Which does raise a small question in my mind about the timing of the course. It was decided to wait until the brain mets became symptomatic before treating them. Part of that decision seemed to be based around not wanting to give me the side effects of a course of radiotherapy while I wasn’t showing any symptoms (managing quality of life basically). But by far the biggest impact on my quality of life has been spending three weeks (and counting) with impaired vision – it’s affected pretty much everything I do.

Having got through the treatment relatively unscathed (so far), I just wonder if we had started prior to that first big headache three weeks ago, could the vision problems have been avoided?

As I have said before, the doctors at the Marsden who made that decision have the knowledge and experience to base these things on – not me. And I’m sure there was more to it than I fully comprehend, so I don’t want to sound critical. But I do seem to be tolerating the treatments well (both chemo and radio) so when I next see them I might just encourage them not to be so gentle with me!

The plan now is that I get a ‘week off’ treatments (theoretically to recuperate from the radiotherapy) before it’s back to London next Thursday for a scan to assess the chemo response, and an appointment to discuss where we go from there (more chemo, or try something new). If we go for chemo, that will be administered on the Friday.

I wasn’t initially keen on the ‘week off’ idea – I just wanted to get on with it. But to be honest, it will be nice to focus on other things for a while (or ‘focus’ as much as my eye will allow – har har!).

Aside from hospitals, treatments and cancer, then…

Sally and I decided to celebrate the end of the radiotherapy by going out last night for a meal and a film – our first night out since February. Saskia thought she would throw in a little spice with a tricky bedtime routine – leaving us standing by the door, one shoe on, one off, wondering whether to stay or go. Fortunately she quietened down, and was left in the capable hands of my Mum.

So we had a lovely evening in the end. Thanks to steroids I managed to eat an eye watering amount of food, followed by seeing ‘Salmon Fishing In The Yemen’ (which we would thoroughly recommend).

And in exciting other news, we have booked tickets for Stewart Lee’s latest stand up show in Tunbridge Wells in June. Which I am very much looking forward to – especially as his DVDs helped cheer us up during the early days of my diagnosis. It’s nice to have dates like that on the calendar, after three weeks of mainly going no further than Tesco.

Having said that, I did go to see Saskia swimming on Tuesday, in her new and very posh Monsoon swimming costume (no photos allowed in the swimming pool obviously – thanks Daily Mail). She wasn’t on her best ever swimming form, primarily occupied with drinking the water, but it was still fun to go along nonetheless.

And now for some news I am disproportionally excited about – we have ordered Saskia some sunglasses! Check them out…

Saskia’s shades

I realise this might sound ridiculous, but there are two genuine reasons…

Firstly, she seems to really hate having the sun in her eyes – she will very deliberately squirm away from direct sunlight.

And secondly, whilst obviously very lucky in most ways to be my daughter, the downside is that she inherits most of my risk factors for melanoma. Now melanoma can (rarely, but sometimes) begin in the eye – after my primary diagnosis I was advised to always wear sunglasses in the sun.

So there is some kind of sensible rationale to it – protecting her eyes from UV light. And as a happy coincidence she will look the coolest baby in town! I will be sure to post a photo of her sporting them when they arrive.

Ok, so in practice we know she won’t wear them and will take them off every three seconds, but you have to try!

To round off this post then, we’d like to give another big thank you to Sally’s work colleagues, who recently competed a sponsored swim for our benefit, and dropped round several boxes of baby provisions. We continue to be very moved by the efforts people have gone to on our behalf, and the generosity they have shown.

Here’s a picture of Saskia sorting out her new supplies…

“What? Alphabetical order?! Like Daddy’s CDs?!”

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.

Just a quick update to let you know that we heard from Canterbury Hospital yesterday afternoon – my radiotherapy has been brought forward, and I start tomorrow afternoon. The treatment will consist of five appointments, ending next Wednesday (I get a nice three day break due to the bank holiday).

On balance I am pleased to be going in sooner rather than later (although with a touch of trepidation). This morning was spent nursing another headache (not too severe, but there nonetheless) so it feels good to be getting on with something.

I’m not entirely sure what to expect in terms of side effects from the treatment – I’ve been told everything from “you’ll be completely wiped out” to “you’ll tolerate it fairly well”. I’m going to be positive and expect to lean towards the latter – I don’t usually suffer too much with side effects. In fact I tend to think they can be psychosomatic as much as anything – if you expect to get them you probably will (if I’m a withering wreck by Friday you can all enjoy me publicly eating those words!).

Either way, I have set Sally up as an author on the blog, so if I am not feeling up to posting she can keep you all updated on my behalf. Obviously her prose won’t be as glittering or flowing as mine (I have always been the artistically gifted one in the relationship*) – but she is fairly adept with basic sentences, so you should all be fine in her hands.

Right then – I’m still planning a Saskia post before I go in for treatment tomorrow, but wanted to get this news out there first.

[* Just for the record, this is a complete lie]