Bums, bicycles and brain tumours

imagesI normally ask my wife to proofread my blogs, but I’m on the road with my brother and Dad watching a few stages of the Tour de France as it races up and down Normandy. And besides, despite our ten years of marriage, I’m not quite sure I want to be there when she reads this first.

I’ve learned very quickly over the last few weeks that the effects of radiotherapy on my head stretch far further than the initial sickness and tiredness I felt while the treatment was actually taking place.

It’s been over 10 days since my last treatment, and during and immediately after the daily radiation I lost hair, felt sick and lost energy. I’m pleased to say those side effects have retreated and I’ve cycled every day here in France, though only at a gentle pace and for short distances. I’ve not been pushing it too hard.

But in other senses, it seems I’ve been doing just that.

About week four into radiotherapy treatment I could take the ongoing nausea no more, so asked the oncologist for some sickness tablets to balance things out. She said they may cause a bit of constipation, but I was fit, active and have a very healthy diet, so I shouldn’t expect too much of a problem.

Well, as radiation came to an end it did become a problem. From mild to severe very quickly. On the day we left for our Tour de France trip, I had ditched the anti-nausea tablets completely and was searching desperately for a late night chemist in Portsmouth to find some laxatives.

Nothing in cancer is without consequences, it seems. I thought I’d got off easy, I was wrong.

I struck lucky finding a pharmacist, but the assistant said the only mix I could take that wouldn’t interfere with my anti-seizure medication was lactulose. Take it with lots of water, apple juice and fruit he said.

I gulped down my first sticky, sickly 50ml gratefully, while reading the possible side-effects. The list summed up cancer and its treatment in all its cruel ludicrousness.

I’d been prescribed anti-sickness drugs to ease my nausea, but the side-effect of those pills had made me severely constipated. Now the anti-constipation medication I was taking, the leaflet said, could cause nausea.

I can’t help but think its a taste of things to come when I start chemo in a month’s time. One drug will chase another, will chase another, will chase another. Right now, I swear I’ll never take another of those anti-nausea pills: but who knows how sick I will get and decide I prefer the constipation?

(Am I over sharing? If so, feel free to duck out now because I’m not finished yet. I don’t particularly like talking publicly about my arse, but I reckon someone somewhere may find what I write helpful – and that’s good enough for me.)

Time on the toilet here in France has given me the chance to read L’équipe, the French sports newspaper, to try to decipher what’s going on in the bits of the Tour we haven’t been able to watch from the side of the road or catch on the dodgy TV reception in our motor home.

But the constipation has also given my backside the opportunity to create some stella haemorrhoids. And as the days have gone by they’ve got worse and worse. Right now, the constipation may have eased up, but the piles have started to bleed.

The thing about haemorrhoids – I’ve come to learn as a new acquirer – is that the pain is so ever present and acute, and now with the bleeding so embarrassing, that it brings you down. Like earache, a sore throat, or toothache, it’s an all encompassing malaise that overtakes your whole body and mood. I once heard a comedian refer to them as the grapes of wrath, and now I understand why.

They have left me unable to relax. I’m quiet and melancholy, as well as fearful of the chemo to come. And when in a bar last night my brother had to have a quiet word to tell me that he’d noticed blood was showing at the back of my shorts while I was ordering drinks, I fell to a total low about my treatment.

Is this what cancer does to you? The brain tumour is bad enough, but when you lock yourself away in the toilet of a French bar to fashion a home-made tampon out of folded loo paper to stick between your butt cheeks, you can’t help but feel robbed of dignity too.

“I’m a fit 39 year old cyclist, writer and father, with half my hair missing, and ear that rips from my head every time I put on a new T-shirt, and half a bog roll stuffed down his pants. Pleased to meet you. Oh, where are you going?, we were just getting talking….”

I do think things are easing off now, and I have enjoyed our trip here.

I’ve enjoyed the cycling I have been able to do, and the scenery and the few tourists visits we’ve done have been great. Watching the cycling itself is basically a blur, but we’ve had the chance to ride the last five kilometres of a couple of stages on the morning the pros went through, which gave us at least some impression about what it’s really like out there. There were even crowds cheering me and my brother as we passed. A lovely boost.

A little childish, but fun nevertheless, has been the advertising parade (le caravan) that passes the crowds at the side of the road before the cyclists come through, with marketeers chucking out out bits and pieces of tat which everyone makes a dive for. You can easily find yourself wrestling a child to the ground to claim a crappy keyring, or an inflatable pillow, or even a mini chorizo.

Thankfully, my first successful swag was a yellow cap, one of the most desirable giveaways. Perhaps in the name of karma I did pass on a box of coloured crayons I’d caught onto a cheeky little French boy who kept wanting to high-five me as we waited for the peloton. Generous, eh?

So my first recovery period has not been all bad. I guess the point I’m trying to make, again, is that my brain tumour is far from just this lump in my head.

It is a wholesale, irreversible change of life. Sure, the sun still rises each morning, but life – especially in treatment – threatens to become a continual switch of feeling unwell, feeling tired, feeling sick, feeling down, having speech difficulties, being constipated, and having all of those or none of those all at the same time. And indeed, some days you just forget about it all together.

I hope I’m not complaining too much. Life is good, and the treatment will put me in the best place possible for a longer and healthier life to come. The seizures continue to be absent and I can’t ask for more just now.

But it reinforces the key messages of The Brain Tumour Charity and others: brain cancer is about a whole quality of life change, not just about the lump in your head. It’s about consequences and side-effects, as well as life and death.

And it’s about informing brain tumour patients and their families about the possible outcomes of the decisions they make as they go forward. Decisions which I hope this post, and this blog as a whole, go some way towards informing.

Now if you’ll excuse me, I need to use the campsite toilets.

¡au revoir!

3 Comments

  1. Keep it up, hopefully the adverse effects will pass, I am trying to get myself back out but the unsettled weather recently hasnt helped. I had a dose of stereotactic radiosurgery on a nodule of regrowth which really smarted, apparently it is 13X a standard dose or more.
    Good to see that you havent lost your sense of humour, its easy to do; amazing.

  2. You are a total inspiration Gideon, my wife is on the low grade journey, as am I in a sense, you’ll know what I mean. Your writing style should be applauded and your courage and sense of humour are second to none. I guess we all live in hope, a day at a time.

  3. I have followed you blog for 2 years now. I have the same tumour. I had surgery and radiotherapy but I could not cope with chemotherapy. When you start chemo make sure that you drink plenty of water or you will experience the problems which you write about so graphically!! Wishing you well!

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