Chemo Brain

There’s a strange, little-talked-about side effect of chemotherapy that many of those suffering from it swear is a real thing, although other patients and even some doctors insist isn’t genuine.

Chemo brain.

The effect of chemo brain is that you begin to lose chunks of your memory after having undergone a course of chemotherapy. And I’m here to tell you it is absolutely, positively a real consequence of the treatment.

Ever since having my chemo in 2016, I’ve struggled to remember more and more of my childhood and years as a young adult. I’ve received numerous get-well messages from people claiming they went to school with me, but I simply don’t recognise them or their names. Family events and holidays have seemingly been wiped from my brain, and I find myself looking at old photographs from an outsider’s point of view – even though I’m in them with friends and family members.

This memory loss isn’t restricted to older events, either. Very frequently, Kirsty will bring up something she says we have been discussing recently, only for me to have absolutely no recollection of it. Plus, if I ask for something – for example, a request for what I think I can manage for dinner – I now often ask again an hour or so later, having completely forgotten I’d previously brought up the subject.

And this isn’t just the usual memory getting worse as you get older. I’m losing entire years, and whole people at a time.

If it wasn’t so scary, it would be funny.

I could get away with all sorts of things!

“No, Kirsty – I’d remember if I ordered every single Doctor Who DVD available on Amazon and a life-sized, gold-plated, Dalek-shaped storage unit to keep them all in, wouldn’t I?”

But, of course, losing memories isn’t really the comical situation me and decades of comedy sketch writers have tried to make it. It’s frightening, especially as you know the situation is likely to worsen over time.

And yet, some people still insist chemo brain isn’t a genuine after effect.

They claim that pumping your body with poison in order to kill cells – both healthy and cancerous – somehow doesn’t affect the cells in your brain.

Not sure how that works. Unless, of course, the pouches of chemotherapy drugs are given a damn good talking to before they’re released for use on cancer patients…

“Now, listen here, chaps. We’ve been getting reports in of some of you blighters attacking cells in the old grey matter, and it has to stop. I’m looking at you, Jenkins! The patient you flooded last Wednesday can’t remember where he left his car keys, his sister’s address or any useable synonyms for the word ‘fluffy’ and it’s driving him crazy. It’s jankers for you, old bean, and no mistake.”

So, yes – chemo brain is real.

And it doesn’t just make you forget things. Sometimes it does something even worse.

It makes you remember.

Long-forgotten conversations come rushing back as if they only took place yesterday. They become fixed in place and almost impossible to shift from your thoughts.

Which is exactly what happened to me last night.

I remembered something my dad had once said and, as a result, I didn’t sleep a wink.

I should first explain that my dad – who died from prostate cancer that had spread to his bones a few years back – was not a religious person at all. Unlike my mum, he didn’t believe in any of religion’s great promises, instead focusing on how to be a good and kind human being during your brief time in this world, and teaching me, my brother and my sister how to do just that.

When I was 15 years old his dad – my granddad – Thomas Donbavand, died. There’s a loooong history of the use of Thomas as a name in the family. As well as it being my name, Thomas was my dad’s middle name, and I gave it to Sam as a middle name as well.

My granddad suffered his second heart attack while playing chess one evening with my cousin, and that was it.

Game over.

I was out that evening, playing with a school guitar group at an event at Runshaw College in Leyland, the town where we then lived. We (Damien, Martin, Julien and I) had a great time with that little group, playing twangy instrumentals and covers of songs by The Shadows at various school gatherings.

And, for some unspecified reason, we all turned up to this ‘gig’ at Runshaw College dressed the same in black shirts and silver ties.

We looked like a supermarket own-brand mob family.

Anyhoo, we played our songs and then our teacher dropped each of us off at home. I was surprised when, as I slid my key into the lock on the front door, it opened from the inside. There was my mum, looking serious. She simply said “Ssshhh! Your granddad’s just died.”

I only knew one of my grandfathers, so I instantly knew who she meant.

Everyone was in the living room. My dad, in tears, was on the phone to his brother, breaking the bad news. This was the first family death I’d ever really been aware of. Some of my mum’s family in Ireland had passed away, but we hadn’t been close.

Certainly not as close as my brother, sister and I were to my nan and granddad.

I remember sitting on the couch next to my sister, Sue, feeling terrible for my dad yet somehow unable to cry myself. It wasn’t as if what had happened hadn’t hit home – I felt winded, and just couldn’t muster the energy required to cry at that moment.

After 20 minutes or so, I went up to bed.

In the following days, preparations were made for my granddad’s funeral. And that’s when my dad said the sentence that popped up inside my mind last night and refused to leave. About his own dad, he said…

“I hope he doesn’t know he’s dead, because he’ll be worried about all the upset he’s caused.”

I remember being stunned by the concept, especially as it came from my non-religious dad, who didn’t believe people went to heaven – or anywhere else – after death.

Did my granddad know he was dead?

And that’s what kept me awake last night.

I’m still waiting for the results of my PET scan. Still waiting to find out if the returned cancer is restricted to a single tumour in my left lung, or if it has spread elsewhere.

Still waiting to find out if this is it.

And that’s what kept me up all night.

My biggest fear now the cancer is back is how my immediate family will react and cope if and when I pass on. Due to his Asperger’s and inability to handle the news of my cancer diagnosis, I’m worried in particular about Sam.

No matter how old he will be when it happens, he will struggle to deal with the situation.

And, thanks to chemo brain bringing back a snippet from a conversation I’d had with my dad in 1982, I spent all night terrified that I will know when I’m dead and be aware of exactly how hard he, Arran and Kirsty have taken the news.

And I won’t be able to do anything at all about it.

I don’t mind admitting I spent part of the night in tears.

Cancer’s a right bastard.

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5 thoughts on “Chemo Brain

  1. Maybe there is no such thing as “Chemo Brain” Tommy. Maybe it’s just that the reason for the treatment makes you concentrate even more on the important stuff – like the people you love.

  2. You haven’t a blind clue who I am, but I’m sending you a hug anyway. John Macneil may have a point, if not about chemo brain then, definitely that there can be few things as potent as cancer for concentrating a person’s mind on what matters in their life. Maybe it’s also because you feel doubts about your chances, and fear. That’s only human, and it’s inevitable especially during the waiting time which has got to be the hardest bit. Hang in there and I hope the Chemo Brain gives you a rest for a week or two.

  3. You might be onto something there.I’ve had Chemo for neck cancer ( at the Rosemere as it happens) and I’ve struggled with memory issues too. The old joke was my memory was always suspect but I think this is different.Or maybe it’s the effects of daily Morphine intake which tends to dull the wits. I really hope this new bout has been caught in time because it’s what we all fear and why every ache and pain sends bells ringing.

  4. I believe in chemo brain and I am sure it’s affected me since my chemo seven years ago. A friend has just finished chemo and she asked me if my memory was affected. I am positive it’s a thing. The people who say it isn’t… well I disagree.
    I know how this kind of worry can make you obsess over comments and memories. It’s almost like your brain short circuits into an anxiety loop that just keeps on playing in your thoughts. Normally the thought would pass but I’ve had sleepless nights too which I am
    Sure are brought on by fears of recurrence.
    All I can say is “hang in there” because with patience the feeling does eventually pass. You just have to wait for the tape to play itself out. But it’s the most horrid thing while it’s playing. Feels permanent at the time.
    As another commenter has said, recurrence is the big fear for all of us, so I am hoping so much that you get the best news possible and it’s just a single little lump they can excise and then you can start to get better. Again.
    Good luck Tommy.

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