Guest blog: “It doesn’t seem right to think about dying at 26”

2 min read

During Glioblastoma (GBM) Awareness Week, Charlie Pearson shares how it feels to be preparing for his death when he should have so much life left to live…

 

I have always been the sort of person who loves language. I love how words flow.

But these days, I open my mouth and I’m left hanging, my mind whirring with the effort of trying to remember what I want to say. And then I have to stop because the more I think, the more I feel like I’m going to have a seizure.

A year ago, I found out I had a glioblastoma (GBM) – an aggressive brain cancer that comes with a prognosis of 12 to 18 months. And so now I find myself having to think about the end of my life, when it feels like I was only just beginning.

I’d been flying high at work, carving out a career in the civil service. I’d moved to London from Essex and landed a promotion. It was a high stress environment but I thrived on it. Big dinner parties with friends, nights at the opera and trips to Europe with my partner, Ollie, were top of my to do list.

Charlie and Ollie at Munich Opera House

Life was full and exciting. But then I had a seizure on the tube to work one morning in July 2023. In a way, I was waiting for it. I had suffered a seizure once before, aged 21, in 2019, and scans had shown I had a grade 2 astrocytoma. The news hit me hard and I felt like giving up.

But after going through surgery, an infection and more surgery to reconstruct part of my skull, I felt a renewed lease of life. My medical team were honest – the tumour would come back. But if there was no reoccurrence within four years, it would take a lot longer to return.

I decided I wasn’t going to waste a minute and threw myself into living as though I didn’t have this disease.

And I almost hit that four-year mark. But then, after what turned out to be my last holiday to Portugal with Ollie, came the news that I had cancer spreading across both sides of my brain.

That whole time is a blur. An awake craniotomy, radiotherapy and chemotherapy. The treatment was absolutely awful, I was violently ill. You wouldn’t put your worst enemy through it.

My hair fell out, the steroids made my face balloon and I still find it hard to look in the mirror.

And though I’ve finished my treatment, it’s clear I’ll never be the same again. My personality has changed, I’m constantly battling fatigue and memory loss and I’m easily overstimulated. I live at home now so my parents can help take care of me.

And yet, I’m not done with living yet. Though I can’t do the job I loved anymore, I need something to get up for. So, I’m hoping to begin volunteering in a school, reading to children and helping them to fall in love with language too.

The only way I can get through the days and keep going is to accept my fate. This brain tumour is going to take my life. It doesn’t seem right to have to think about dying at 26, but I don’t feel angry. I’m actually very lucky to be given the time I have with the people I love because I know a lot of people get less time than me.

At a recent wedding with friend Katie

I’ve written my will, told my mum what I’d like for my funeral, chosen the songs to be played and asked some special people to speak. These aren’t things I expected to have to think about for many years but in a way it felt good to get it done.

Now I just live in the moment. Spending time with my mum, dad, twin brother Davey, Ollie and my friends who have all been incredibly supportive.

Charlie with his parents and twin Davey

My story may not be as long as I would have wished but by helping to raising awareness of GBMs and the work that Brain Tumour Research does, I hope I can help prevent others from suffering the same fate.

 

If you’ve been touched by Charlie’s story, you can help us find a cure by donating whatever you can to fund the fight against brain tumours. Together, we can make a difference. To make a one-off or monthly donation, please click here

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