The week leading up to treatment beginning, I’m quite down, tired and crotchety. If I’m like this before treatment starts, what kind of bitch will I be when the going actually gets tough?
What seems inescapable is the idiocy of willingly submitting myself to nearly a year of most likely gruelling treatment when I feel just the same as I did before anyone knew there was a tumour in my head. All the tumour has done is cause a total of a couple of minutes of seizures, which are now under control. Apart from that, I feel fine. The treatment on the other hand… well, here’s the list for radiotherapy alone. The chemotherapy will have a whole new list of joyful experiences to go with it.
They go off the side of the page for flip’s sake! They say (with added comments, obviously, because I can’t help myself):
Significant, unavoidable or frequently occurring risks: [you see? Not a given, but that’s some pretty strong wording. They’re essentially saying “We’re going to break you. Hard. K thnx bai”]
- Weariness [I suspect this ‘weariness’ may be similar to the time a Glaswegian midwife told me childbirth ‘can be a bit sore’. (The word ‘sore’ in Glasgow covers everything from a slight graze right up to a shark chewing off your leg.)]
- Hair loss [radiotherapy only causes hair loss where the beam goes in and where it comes out the other side of you. *vomit* Who knew?]
- Loss of concentration [meh. That’s called adulthood isn’t it?]
- Exacerbate fits [do not like]
- Long term scarring in brain that can cause inflammation/necrosis (cell death) [la la la not listening]
- In long term 10-15-20 years, second radiation induced tumours of skin/brain/meninges [hysterical manic laughing]
- Cognitive impairment
Why on earth am I doing this? If I had a type of cancer that caused great pain, or other difficulty, it would no doubt be easier to be gung ho about this next chapter, but as it is, it just seems like masochism. Yes, leaving the tumour to grow and mutate further is a really bad idea, but damn it’s tempting whilst it’s still behaving itself.
When Paula took us through all these side effects, I joked that we’d all have cognitive deficit in 20 years anyway. The idea that I might be around to experience anything in 20 years made it worthwhile. I’ve lived with debilitating fatigue for many years, that’s nothing new. Hair loss is kind of to be expected with cancer treatment, I don’t like the idea one bit, but I’ve got really thick, shoulder length hair, and a combover has more than sufficed for covering the biopsy site, so it hopefully, it’ll be fine.
The main thing I’m scared of is the radiotherapy sparking off more seizures, and that this time I’ll be less lucky with where they happen. Maybe I’ll collapse in the road and get knocked over, or take a fit in the shops and everyone will point and stare. Maybe it’s psychosomatic, but this whole time, my left arm feels like it would be having a seizure if it wasn’t for the drugs. We used to do this thing at primary school, where you trap your arm for a couple of minutes between your body and a wall. When you release it, the blood rushing back in to the arm, or the pressure difference or something, makes your arm feel all light, and it floats up of its own accord. That’s how my arm feels all the time now. Like it’s not entirely mine; as if I’ve paid off 90% of the loan on it, but the bank could still repossess it if they wanted to. It’s a constant reminder that a whacking great dose of radiation may be all that’s required to set it off properly.
So I spend the whole week unsuccessfully trying to find out if anyone, anywhere has the same kind of tumour and seizures and me, and if radiotherapy exacerbated them. People in Facebook brain tumour groups told me stuff like they’d had continuous fits for 18 days and had to be put in induced comas, so that was reassuring. Cheers lads. I eventually managed to find a 1991 research paper on 3 men who had tumours like mine, and seizures like mine (basically a full on tonic clonic seizure where you stay conscious is unusual. A painful seizure is unusual. Both is very unusual. Yay for me!) However, there was no update on how radiotherapy affected them. In a not at all stalky manner, I tracked down the four authors of the paper and emailed them to ask how the subjects had fared. None of them replied, but they probably have all changed the locks on their front doors.
The ‘radical dose’ of radiation I’ll receive is 54 Grays (Gy) split in to 30 doses of 1.8 Gy. A chest x-ray is 0.00014Gy. Obviously, everything is tightly controlled and the benefits outweigh the risks, and it’s not a proper comparison yadda yadda, but full body exposure to 5 Gy in one go kills most people within 14 days. So that’s nice. In fact, the dose is such that radiotherapy is often thought of as a once in a lifetime treatment. I check this with Paula – what if the tumour regrows and I’ve used up my lifetime radiation allowance? She says that my Reddy Brek glow should have subsided sufficiently in 5-10 years that I can have another blast if necessary. Great. I’ll look forward to it.
There are 11 days between the final radiotherapy mask fitting and the first radiotherapy appointment. It feels like I have to make the most of them, get everything sorted before D-Day. So of course, I can’t think of a single thing I want to do, only hundreds of mundane things that have to be done so I can surrender to treatment without them hanging over my head; a VAT return, sorting the car insurance, getting the central heating pump replaced. Meh. Can’t be arsed. Even writing this blog, which had previously been quite cathartic and helpful in processing all of this stuff now seems self indulgent and whiny.
We do go hat shopping though, to cover my hair loss if a combover won’t suffice. My hair is very thick, and big. Once it gets to chin length, it’s basically a triangle, so hats look weird and make me too hot. E finds a grey cashmere beanie which will be nice and soft. She tries it on and looks impossibly chic and modern. I try it on and look like Benny from Crossroads. It’s 70% off. It’ll have to do.
The week before radiotherapy starts, my concessionary bus pass arrives. Technically, this pass allows me to travel on any bus anywhere in England for the bargain price of £0.00. I love it about as much as it’s possible to love an inanimate object. Let me state right now that I want to be buried with it, along with my blue penny – a £1 coin sized piece of plastic that the cashier in Lidl gave me, which you can use in place of a coin when getting a supermarket trolley. Both kids have asked, on separate occasions, if I love the blue penny more than them. I don’t, but did have to think first before answering.
Anyway, the arrival of the bus pass perked me up a fair bit, and I head straight to the nearest bus stop, the heady scent of adventure on the open road filling my nostrils. I decide to get on the first bus that arrives, and see where life takes me. Unfortunately, it’s about an hour until the kids are due home from school, so the open road is going to have to be extremely short for today. I get the bus as far as the local High Street that I’ve been walking to every day anyway. Never mind, it gives me a chance to relearn the rules of bus travel. It’s been nearly 20 years since I’ve regularly used the bus. Back then, you would be welcomed aboard smoking a fag, but unceremoniously kicked off if you tried to pay with a fiver. Now the position is completely reversed. There are apps and smart cards and all sorts. The only things that haven’t changed are bone shaking suspension and driver temperament.
And with that, it’s time to devote the next 6 weeks to daily brain zapping.
Wishing you all the very very best these coming weeks Ruth, I’m listening and sending strength and thinking of you x
Thank you x
Hi Ruth – all the best for your treatment! Just as some context I have/had OGD G3 and finished with no further *touch wood* seizures other than the tonic clinic seizure I had back in April, and I’m on a pretty minimal amount of keppra at 1gram a day – so it is possible to get through it all without suffering more seizures! Hope it all goes well for you 😊
Brilliant news Chris, long may your lack of seizures continue!
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Thank you! And to you too, p.s. the daily mask wearing isn’t that bad just a little tedious 😂
Yeah, it’s fine really. I’ll be half way through tomorrow. Can’t believe how quick it’s gone! Do you have a date for chemo yet?
Oh wow that’s flown by! Yep chemo for me starts middle of November – can’t wait!!
I bet! 😉 Good luck. x
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Ruth, you don’t know me but your little sister Frances is my daughter’s friend (Julia). I send you many well wishes and although I haven’t had a brain tumour I have been through the whole cancer treatment regime. I work as volunteer at the Charlie Bear shop in the Freman hospital and we sell lots of good quality headwear and can show you how to tie and wear scarves. Also there is a lovely lady called Sarah who sells wigs and she comes in on a Tuesday and Friday afternoons I think. I am thinking of you and following your blog. Sue
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Thanks Sue, I’ll drop by and say hello one day after radiotherapy! I saw Sarah on Friday and am not sure if a wig is for me, but will have to assess the final damage first. 😐