Oligodendroglioma, Radiotherapy

29/30

Tomorrow is my last day of radiotherapy, the last of the 30 sessions, and the day I get to ring that bell like an enthusiastic Quasimodo. I’ve had a surprisingly easy ride, with relatively mild side effects, but the last few sessions have been a bit of a slog and I am more than ready to have it over and done with. I’m getting slower and slower both mentally and physically, and the cognitive effects are undeniable, making it harder for me to think clearly, or find the words I need. In fact, in the time it takes to find a word I’m reaching for, I’ve usually forgotten what I was trying to say anyway, which is why I’m writing less and why this post is just a collection of anecdotes and observations about the last couple of weeks really. The problem seems to be that my energy is quite variable. Most days until the end of last week, I’m fine, almost weirdly exhilarated, and try to do lots of stuff, which is daft. I do try to match my activity to the energy available, but I’m always on a lag, doing on a Monday what I was capable of the previous Friday, without recognising that my energy has decreased since then.

One thing that has particularly done my nut is the benefits system. The Department for Work & Pensions (DWP) used to be my main client when I was a management consultant. I knew the benefits system inside out, but now none of it makes sense to me. The UK government website tells me I have to apply for Universal Credit, so I do. It’s like falling face first in to a never ending abyss of badly designed, and downright dangerous bureaucracy. The sheer incompetence and frankly, lack of care and concern the policies, system and processes are designed with is shocking. Vulnerable people are being made vastly more vulnerable because of it, and it serves neither the claimant or the taxpayer in any way shape or form. This shit would never have flown in my day.  The system certainly needed simplifying, but there are many ways it could have been done better, both more efficiently and compassionately.

My case worker tells me over the phone that most people on chemotherapy start their own businesses, because they’re well enough to work, but ’employers don’t want them’ and I should crack on. Really Malcom? Do they really you little bullshit artist? He schedules my back to work interview for a couple of days later, about two hours after my radiotherapy session, which is peak stupid glazed over time for me. Luckily, the back to work appointment lady is a no nonsense old school DWP civil servant who takes one look at me, bald in a headscarf with my eyes rolling back in my head, declares the whole thing a bag of balls, cancels the claim and puts in a claim for the benefit I *should* have been told to apply for, plus gives me a number to call for another suitable benefit. Cheers Maureen, it’s people like you that are the only thing currently holding the UK public sector together and you deserve better.

Remember my fond hope that radiotherapy would turn me in to a superhero? Well it has. Just a really crap one. One slightly freaky side effect is that in the hours after treatment, the targeted part of my scalp gets unnaturally hot. The kind of hot you get from sitting to close to a radiator, or turning your electric blanket up to 11. A heat generated externally rather than internally. There’s a marked difference in temperature from the back of my head to the top. It’s a bit like sunburn and whilst not painful as such, it’s tender and demands touching. Most evenings I sit with a cold wet flannel on my bald head, like some sort raging sex goddess.  My head can warm a flannel through in about 2 minutes. Because of this, a friend dubs me The Human Candle; a really crap version of The Human Torch. If you fancy a fried egg cooked on a head, to be ready after about 4 weeks, I’m your woman. Kapow!

The other side effects now coming to the for include fatigue, although it’s mostly a mental weariness rather than a physical thing. It’s not really like any other tiredness I’ve known. Not worse, just different. It’s helped by peace and quiet rather than sleep, and if anything, I’m sleeping less than normal.  Each night, I have the same dream, but it feels like I’m awake. I suddenly realise when halfway between sleep and wakefulness that I’ve forgotten an absolutely vital piece of information from the hospital. Sometimes it’s an extra medication that means the difference between success and failure of treatment, and I’ve not been taking it. Sometimes, it’s the secret to life, the universe and everything, that the radiographers have discovered and need me to pass on. The fact that they could just pass this information on themselves never seems to occur to me. Both options result in me spending all night wracking my brains unsuccessfully trying to remember this vital information. It’s not massively restful to be honest.

 

Now my hair is gone and I’m visibly ‘ill’, people are treating me differently, but not in the way I expected. I thought wearing headscarves and looking like a cancer patient would draw lots of unwanted looks of sympathy. If it does, I don’t notice it, mainly because by the time I get anywhere that people are, I’ve already forgotten what’s on my head, or it’s the cancer centre, and bald people are ten a penny. Arriving at the bus stop last week, four or five people were already queueing. When the bus turned up, they all ushered me on first. It took me a minute to realise why!

There’s a truism that after the age of 35 or 40, women are invisible. Because the invisibility develops gradually, you don’t really notice it until you’re suddenly very visible again. Wearing a headscarf or very obvious wig out and about is like being young and pretty again, except instead of it being men staring and smiling, it’s women. Whilst many avoid my eye all together, the number of strange women who’ve caught my eye and given me a big grin over the past couple of weeks has been great. It’s never the pitying glance I dreaded, always a ‘you go for it, it’s gonna be OK’ type look, and it’s very heartening.

I do need to learn to take a compliment on my new looks though. On Saturday, completely overwhelmed by Tescos, I went to sit in the coffee shop whilst the family completed the shopping. A lady at the next table leaned over to say how much she liked my purple ‘hair’ and how much it brightened the place up. It’s dimly enough lit in Starbucks that I think she did perhaps think it was my own hair. Confused and overwhelmed, instead of thanking her for the kind compliment, I panicked and barked

It’s a wig! I’m totally bald! I’ve got cancer! Thank you! It’s good you were fooled!

Hnnnng. Poor cow probably won’t compliment anyone else in a hurry. Sorry for making your coffee break with your husband so awkward, nice lady.

8 thoughts on “29/30”

  1. Slower mentally Ruth? Really? Still a brilliant piece of writing! Your brain’s not fried yet dearie ( hope that wasn’t too off colour :-/ )

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  2. Loved this Ruth please keep going. You are most definitely a natural wit which is I hope helping you to cope! Pity this awful Tory gvt has made things so much more difficult but then that gem of humanity which was Maureen was allowed to shine! 😘🙏

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  3. Hi Ruth, you may or may not remember me ( Craig Coggins , an old school friend). I’m sorry to hear of your illness and hope you are doing well (whatever well is, but its an obligatory thing to say ). I was diagnosed with cancer in 1996 and here I am in 2017 still with the said cancer only older and fatter. No doubt you have had many ups and downs on your journey as have I, yet there is always humour to help along the way. I recall my consultant telling me he had good and bad news, the bad news being the cancer had spread, the good news being he was going on holiday WTF. Take care, smile.

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    1. Of course I remember you Craig! So sorry to hear your cancer is back, but sheesh that consultant is a piece of work 😠 . Where are you having treatment now? Hope you’re doing well, it’s so lovely to hear from you. xx

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      1. Hi Ruth, my cancer is suppressed and has been for 20 years. It spread in the early days into the lymph nodes but hey treatment killed it off. My cousin was diagnosed with a stage 4 glioblastoma in August, not the best brain tumour to have. She’s just finished radiotherapy and started her chemo. Its a tough regime as you know.

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      2. Ah, that’s good to hear that you’re doing well, but sad news about your cousin. GBM4 is definitely a scary one, but the statistics don’t necessarily reflect real life. If she’s in the NE, she should come along to the Maggie’s brains group – there are several people there who are healthy and happy 5 or more years after their GBM4 diagnosis.

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  4. That’s reassuring to hear, will pass that on to her. Remember Ruth, we’ve faced bigger things than Cancer, drumroll please – Heaton Manor School. Look after yourself, keep the blog going. Best wishes for Xmas. Xxxx

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