Sarah was right. Once the bell was rung, I could feel the tiredness kicking in even as we walked back to the car park. It was that release of something being over and done with, the breathing out when you didn’t even realise you’d been holding your breath. I tried to make sure there wasn’t much planned for the rest of the week, but the day after radiotherapy finished E had a parents review day at school. This meant she had the day off except for a 15 minute slot when she, A and I saw her form teacher about how she’s settled in. The school is perhaps a 15-20 minute walk away. I couldn’t make it, so E and I went on the metro. One stop. That’s like getting the lift for one floor. Ridiculous. Even that wore me out. Coming up the escalator my heart started racing and I felt all light headed. We had to wait for a couple of minutes until I could complete the last few metres to school. I just about managed to focus on what E’s teacher said, and then A drove us all home. When we arrived, the idea of having the energy to be able to open the car door, and actually get out of the car seemed incomprehensible. Surely you need to be an Olympic athlete or a toddler on a chocolate bender to have that sort of unlimited energy supply? Reach over and pull the door handle? *Move the door?* Make my limbs and body move? Unthinkable. I got there in the end, but it took a while, and now understand the mental fortitude it takes to climb Everest.
After the past few weeks, I now think fatigue is made of three distinct strands, plaited together, and somehow brain radiotherapy lets you experience each separately, or at least each takes a turn at being the dominant strand. This first one was a complete lack of energy. It’s like someone has stolen your energy in the same way that someone could steal all your money, so you just have nothing. No reserves whatsoever. Destitute. That day, Zombified Wednesday, was by far the worst for energy. I only had a few bites of tea because just lifting the fork to my mouth was way more than I could be arsed with. Rather go hungry than have to move my arm again. Even folding a single load of washing left me shaky and exhausted. Being so aware of the weight of your limbs and your little spindly neck having to hold up your big heavy head is strange, so it’s good that this strand passed in just a couple of days.
Then the next strand, sensory overload came to the fore. It’s like having a faulty fusebox in your house. Normally your brain can cope with more different simultaneous processes than you’re even aware of – you can have all the lights and gadgets in the house on at the same time with no problem. Now I can have perhaps one light and one gadget maximum. Plug in another gadget and the trip switch goes, blacking out the entire house. One day I’m desperate to go to the Metrocentre, so off we go. Would you believe it? On a Sunday shortly before Christmas, one of Europe’s largest shopping centres is only full of people, and light and noise and smells and AAAAAAGGGGHHH! I last 10 minutes tops. Everything is too bright, too stimulating, too much to cope with. My body is not tired but my brain actually hurts.
I am officially thick as mince. Our next door neighbour is poorly and it takes me 8 consecutive days of going to the shops with the express purpose of getting flowers for her before I remember to buy them, When I finally do remember to buy them, I leave them in the shop and forget to bring them home.
But it’s not even a case of forgetting stuff, it just doesn’t seem to go in. Watching ‘I’m A Celebrity’, it took me a good week to notice that some YouTube oik had been kicked out for bad behaviour. Remarking to A that it was disturbing to be so unobservant, he was surprised. “You did notice” he said. “We had a whole conversation about it when Ant & Dec announced it”. I have no recollection of any of this whatsoever. Oh shit. That’s so much worse than my original story.
Everyone says “oh ha ha! I have a memory like a goldfish too! Ha ha! It’s fine,” No. No you don’t. There’s a poster about dementia at the GP’s surgery that says it’s normal to sometimes forget where you parked your car. It’s not normal to forget what colour it is. That’s the difference. I (hopefully temporarily) don’t know what colour my car is.
During this time, our boiler, which we have known for years was on its last legs finally gives up the ghost. The big energy companies won’t even service it any more because the wiring isn’t properly isolated to current standards or something, so we rely on Jimmy, who’s more than happy to fix anything, no matter how lethal, with a can of WD40 and some gaffer tape for £30 and a cup of coffee, but when Jimmy stops bothering to put the boiler cover back on, and leaving us our own can of WD40 and special screwdriver because he knows he’ll be back again every day this winter, we have to recognise the time has come. The trouble is, no one is willing to accept the boiler inevitable until it’s late November, it’s snowing and you can see your breath inside the house, so there’s a massive waiting list for boiler fitters. We’ll have to wait over a month. So we played the brain tumour card. Played it hard. Magically, a slot comes free after just over a week of living in a sub-zero house and we have warmth again. Gotta get your perks where you can, eh?
Although it sounds like I’m moaning, through all of this cold stupidity, I’m perfectly happy. Just pootling about, going on a daily potter to somewhere or other. Watching telly. I can’t really cope with reading or using a computer too much, but time passes in a pleasant blur. Until the third strand comes to the fore, that is. The third strand of fatigue is just plain old fashioned oh-my-god-I-must-sleep-NOW tiredness. Tiredness and I have a very long and very troubled, life altering, history. It had been, for the first time ever, improving a bit. Now it’s back. The tiredness that will not go. That is not relieved by sleep. That makes you so tired you can’t sleep. Can’t think straight. Can’t do anything. It’s more than frustrating, it’s very, very depressing. I’m trying to remind myself that this should pass, that this level of tiredness is to be expected after radiotherapy but it’s hard. It feels like it’ll be here forever, like it was before. I want to be better, but if that’s not immediately possible, then I want to know when I will be better. Unfortunately, any consensus on this is as elusive as steam pie. Cancer Research says it starts 3-12 weeks after the end of radiotherapy, lasting anywhere from a few days to several weeks. A leading study says it peaks on days 11-21 and 31-35 after treatment. The Brain Tumour Charity reckon it’ll get worse for ‘a number of weeks’ after treatment. Macmillan plump for tiredness starting 4-8 weeks after treatment, gradually getting better after a few weeks. It either should be better by now, have not yet started or be going on right now. Aren’t scientists supposed to be precise? Go home, scientific community at large, you’re drunk. And anyway, you’re not even my real dad.
So yeah, even though I know it’ll pass, I’m a bit fed up of this now. Not being able to go anywhere, hold a conversation or entertain myself with anything more taxing than the likes of Cake Wars on telly. Given that I’m not doing anything, there’s not even anything to blog about unless you think you can handle more musings on daytime TV and random things that are boiling my piss. Like why, for the love of god, are Little Mix not allowed to wear skirts or trousers? GROWN WOMEN SHOULD NOT BE FORCED IN TO LEOTARDS. Leave off, Cowell!
I think you are doing great – the fact that you can write this is a great achievement.
Embrace the shit Christmas films on Channel 5 every day – they are as intellectual as my brain can manage! And huzzah for playing the tumour card to get a boiler. Why the bloody hell not, you probably never ask for anything xx
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OMG the Christmas films! Adam is obsessed with them. They are SO bad. Have you seen Mrs Miracle or An En Vogue Christmas yet?
I’ve no idea- I never look at the names. But I’ve watched 1 or 2 a day all month. There was a girl from Holyoaks in one today- madness! They’ve all merged into one!
To be fair, they are all exactly the same. We saw one the other day where now grown up Sabrina the Teenage Witch kidnapped Mario Lopez to pretend he was her boyfriend at the family christmas do. There was loads of moralising on honesty and openness in relationships. She fucking kidnapped him! That’s not a good model for relationships!
I’ve seen lots of amnesia, loads of haters becoming full of joy and tonnes of bakeries. In cute towns. Love it.
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Ruth – I’m just reading the third volume of Danny Baker’s autobiography (and if you have the energy to read it, it’s mostly very funny). However, the bit I’m reading is not funny at all, and details his experience of head and neck cancer, from which you’ll be glad to hear he made a full recovery. Some of what you’re describing is what he outlines too, especially the exhaustion. He is back to his old self though, and so will you be when the effects of the radiotherapy and chemotherapy wear off. I’m glad you posted today – I was thinking about you last night after reading a chapter of his book, and hoping you were doing OK.
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Thanks Jenny x
‘I’m as thick as mince’ ha ha ha
Great read! What a talented writer! Xxx
I hope you didn’t think, I came, read and left. It’s taken me this long to go back to the beginning and read your whole story bit by bit. I am sorry it took so long..
So pleased to hear the first part of your recovery journey is completed. I am emotionally exhausted just reading it and can’t begin to imagine what’s it’s like for you and your family.
I hope things are better now and that you are able to regain enough strength for the next leg.
Thinking of you. Hugs and love