Chemo Brain. The struggle is real. And it’s scary.

Chemo brain makes you feel like you’re going mad(der).

I expected to feel sick. I expected to be tired. I expected to go bald. I didn’t expect to become stupid and lose my mind.

Chemo brain. It’s a thing. They don’t tell you about it.

Initially, I didn’t notice a change in my brain. All the other side effects of chemo were up front and centre. I was just in survival mode, getting through the days, trying to pretend to feel normal, trying to carry on being mum.

But as the months of treatment took their toll, I came to realised that my brain just wasn’t functioning as it did before. I used to pride myself on being sharp, quick, smart. I suddenly found myself being - genuinely - beaten at memory games by two 4 year olds. And literally forgetting everything.

Something someone just told me? Gone in an instant. What I walked upstairs for? No idea. Three things I need to buy from the supermarket? Blank. The 4 digit number code I’ve used for everything since I was 10? Have to look it up. Trying to concentrate on a conversation or TV programme? Sorry, what …

The day I forgot one of my best friend’s names, I cried. It’s one of the only times I’ve cried in this whole journey.

It was wild. I felt so dumb. And so scared that this was me for the rest of my life.

How did I get my brain power back to normal?

So what have I done about it to get back to normal?

Nearly normal.

Firstly, I developed coping strategies. I literally wrote everything down. And still do. It’s a bit ridiculous what goes on my to-do list . Even basic things like ‘clean bathroom’, ‘go to pharmacy’ ‘call best friend’ get added. Partly so I get the satisfaction of ticking them off. But also, by having lists, I feel like I’m still on top of things and coping like I was.

Secondly, I have had faith in what my doctors told me. Which is that it will come back. They’re right. Someone told me that it takes up to a year for your cells to fully recover from hard core chemo. To me, that feels about spot on. It’s been a slow burn, with micro improvements rather than a sudden change. But 18 months after finishing chemotherapy, I now have renewed confidence that my brain cells and concentration are working pretty much normally again. My memory isn’t as good as it was - that’s partly just age and menopause - but I think that’s also massively to do with use. It’s a huge relief that I don’t think there’s been permanent damage.

Which brings me to my third thing. Practise. A few months after finishing radiotherapy, I began a course of brain exercise sessions. I am very priviledged that where I live, this was provided for a nominal fee (15 euros) through a charity. But equally, it’s something you can do yourself with a bit of discipline and organisation. Maybe something you could do with a friend or partner.

Once a week, a group of us brain battered post cancer patients, would gather online to be led through a series of exercises by a trained psychologist. The exercises were a mix of number, shape, letter, word, and picture memory tasks. They got increasingly more complicated and challenging. The first time I tried it, I was horrified. My previously sharp brain had literally stopped functioning. I couldn’t follow or remember most of it.

But within weeks, I improved immeasurably. Initially, it was soul destroying, hard work and I dreaded it. But the results were impressive and I soon started to look forward to testing myself in the sessions.

I’ve now stopped doing the brain exercises in a structured sense. But I still give myself little tests. How many numbers can I remember from an IBAN code. How many things on the shopping list can I remember, without looking. How many words can I sing from songs I used to know off by heart. I do word games online and I am capable of reading and absorbing much more than I used to without switching off or feeling like my brain is going to explode.

Completing a recent online course, which was a lot more scientific than I had bargained for, has showed me that my brain is still capable. With practise. With breaks. With extra care. And with lots of notes. But that I need to exercise it.

Exactly as I do my body.

It’s new for me, but I’m embracing brain sport as part of future proofing my life.

Drop me a line if you’re battling with chemo brain. I’m happy to talk you through what I have done, that has helped so much.