Radiotherapy, done…

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?!”

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8 Comments

Filed under Battle with Melanoma

8 responses to “Radiotherapy, done…

  1. James

    Great to hear the treatment is going well Ben. Lots of love from us x

  2. Caroline Dormedy

    Congrats on getting through it Ben.
    Glad you’ve been able to get out and have some fun at the pictures….nice to be out with Sally too I would guess. (which doesn’t involve a dr/hospital or anything medical!)
    Love the Shades for Saskia!! ha!
    Take care and enjoy your ‘week off’.

  3. Janine Pommer

    Glad to hear the treatment is done and you still seem your ‘chipper’ self. I can imagine your vision is very frustrating to live with but having seen you out and about you would never know there is anything wrong, you appear to cope brilliantly. Might have to think of a rapper name for Sas is she’s going to be looking that cool! x x x

  4. Claire & Phil Leslie

    So pleased you’re not feeling too bad Ben and that you’re getting out and about – The Stewart Lee show will be great! Saskia looks so pleased with her goodies – you both have some great friends! Take care, lots of love xxxx

  5. june and colin

    hello Ben,
    I am sitting here tonight after a long day of meetings…You have Costco’s in england right?well they called me about my clothing line…Long story, but it looks good.:) I will share it with you later on….Its funny you mentioned Tesco’s…Brings back a few memories when i lived in england… everyone still goes to Tesco’s!! oh well i guess they do carry alot of stuff.:) I always like to support the smaller shops too… Well im pleased your feeling well and planning some things…so the movie called Salmon fishing in Yemen? wow what is that all about…I wonder if we have that in California…I will try and find out and go see it. I do like the movies and of course some popcorn too!!

    Right now we are having sort of a heat wave, lovely but too hot….Tommorrow im off to a place call Korbel. Its a winery in an area called Russian River….Very nice place to visit… Check it out on google if you want…
    Ok buddy, stay strong and keep me posted…

    Your over seas connection! xxxx

  6. Justin

    Aparently the Yemen tourist board are getting lots of calls and are having to explain that there is no Salmon fishing in the Yemen and its just a movie….. looks like the film has done for Yemen what Borat did for Kazakhstan (“put it on the map” for all the wrong reasons).

    Thanks for the blog Ben I regularily chuckle along to your quips.

    Sending love to you all from us all Justin, Aigul, Aliyah and Marat xxxx.

    P.S. Hopefully I have included enough “” and () and ps to annoy you!

  7. Ron and Nancy

    Hi Ben,
    We hope that your ‘week off treatments’ is going well and that you are not getting any further side effects from the radiation.
    Saskia’s sunglasses look really ‘cool’. It is so nice to see the photos of her.
    She looks like such a sweetie! All the best with the appointments this week.
    Thanks for educating so many on melanoma. I hope you know that you are doing a fantastic job with your blogs.
    Much love to you, Sally and Saskia.
    xoxoxo
    R&N

  8. Sue Goldsmith

    Hi Ben
    Remember me from Coty?!!! Just want you to know that I’m thinking of you and praying with fingers & toes crossed that all goes well with your treatment. Sue

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