Monthly Archives: December 2012

Up and Atom II – Revenge of the Linear Accelerator

So as some of you might guess from the post title, I have started my second course of brain radiotherapy (the first course being back in May).

It’s much the same deal as last time, five treatments spaced over five consecutive days – number two was today, so I finish Friday.

This was all requested by the team at St. George’s in Tooting, but the treatment is carried out in Canterbury to save us travelling to London each day. We owe a massive thank you to the team at Canterbury for organising the treatment at such short notice.

So far the radiotherapy has had no ill effects. In fact I had probably the best nights sleep last night that I’ve had in months. I don’t know if it’s related, but long may it continue! Tiredness is listed as a side effect I think (I’m not very thorough at checking side effects these days, I just sign consent forms like they’re going out of fashion!).

Other than that I don’t have much exciting news. Legs are getting even weaker, and stairs present a major obstacle. We have been referred to an Occupational Therapist who can hopefully help with that and a few other problems. Also once the radiotherapy kicks in I should be able to reduce my steroids, which should lessen the muscle wastage in the legs.

I’m also going to get a stick. It’s not unknown for me to get stuck in low chairs nowadays, without the strength in my legs to get up. Also with my pathetic legs my walking isn’t that stable. So I figure a stick might be helpful. I’m going to get a cool mountaineering stick though – not an old man wooden stick with a duck’s head on the top.

It will also be useful for prodding things, for example distinguishing between rocks and hedgehogs – an awkward situation I often come across.

Yep, that’s about it for news. Except for flu jab on Saturday and clinic and chemo next week, so all in all it’s a very busy time.

Will hopefully write again at the weekend.

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Early morning ramblings…

It’s 4.a.m., and I can’t sleep. All is completely silent, with the exception of the occasional ‘sleep-whimper’ from Saskia’s room. Poor little thing currently has probable conjunctivitis in both eyes, and a chest infection to boot. She has some antibiotics which will hopefully sort her out.

Being awake in the early hours is fairly common for me these days. So this time I have decided to do something productive with this time and write an update for the blog.

This last week has been another busy one, with three trips to London (vaccine, clinic appointment, chemo). So I’m looking forward to a rest day tomorrow (well, technically today I guess).

All the appointments went pretty much as planned. It looks like I am to have another course of brain radiotherapy, hopefully in the next couple of weeks. And apparently the vaccine should be starting to kick in about now (usually after the third dose).

So there’s plenty going on in terms of treatments – it feels like we are throwing everything at it. Next, the kitchen sink.

I am pleased about that though. In cancer treatment there is this trade off between the benefits of a treatment and the impact of it’s side effects on the patient’s ‘quality of life’.

This is a choice that I strongly believe should lie largely in the hands of the patient. This is why I am disappointed in the Royal Marsden – they effectively made that decision for me, telling me to go home for ‘symptom management’, based on their rigid ‘flow chart’ style of treatment options (which for some reason also excluded some perfectly orthodox treatments from which I am now benefiting).

I wasn’t ready for ‘symptom management’. I’m young(ish), and otherwise relatively healthy(ish), and seem to tolerate the treatments fairly well. And most importantly I have an awesome little girl, fantastic wife, and an amazing family to fight for.

So I am grateful to my new consultant for giving me the opportunity to be able to continue to fight this disease. I won’t lie, it is hard, and who knows, one day I might tire of all the treatments and side effects, but I’m not there yet – there’s still the kitchen sink in reserve.

In myself I am feeling ok at the moment. I have little in the way of pain these days, that seems very well controlled.

The draining of nearly five litres of fluid from my right lung seems to have had massive benefit. I can still get out of puff, but nowhere near to the same extent as beforehand, and recovery time to a normal breathing rate is much improved.

I would say fatigue and weak legs are my biggest problems. Fatigue is hardly a surprise after six cycles of chemo, and the muscle wastage in the legs we know is the steroids. I’m ok walking on the flat, but stairs are a real killer. I sometimes find myself crawling up them now, like Saskia – except she’s faster than me.

Due to these issues I don’t get out much these days. I would imagine for most people my current ‘quality of life’ would appear pretty rubbish (and in some ways it is). But I have found that by readjusting my expectations of what ‘quality of life’ actually means / involves, then it is possible to enjoy my days, and even take opportunities that would otherwise not be there.

For example, listening to music – I used to always be listening to music when I was younger. As adult life, work, etc, encroached then I found less and less time for it. But now I can lie on the bed with the iPod and rediscover my (fairly vast) music collection.

So it’s ups and downs where ‘quality of life’ is concerned. The trick is to focus on the positive (not always easy).

Right I think I will leave it there and see if I can’t get back to sleep. I’ll post this later though, I don’t want to get lots of angry people shouting at me for making their phones go off at stupid o’clock in the morning.

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