Project manager Tom from Herefordshire was diagnosed with a pilocytic astrocytoma after falling ill one evening before dinner in 2019. Following 12 hours of vomiting, he was given a CT scan which revealed the shocking discovery of his brain tumour. A month later he had a 10-hour operation which left him with partial blindness and is now monitored with regular scans. To mark five years since his diagnosis, 32-year-old Tom is taking on a series of running challenges to raise awareness of the disease.
Tom tells his story…
My brain tumour came as a huge shock whilst visiting friends in France where I used to live. Shortly before dinner, I didn’t feel right and went to lay down only to spend the whole night and early next morning being violently sick. I couldn’t keep anything down, even painkillers came back up, and for a short time, I lost all sensation and movement in my left leg below my knee.
My sickness subsided enough for me to go to the local hospital, encouraged by my friends who had seen how ill I became over a short space of time. We were in a rural French village called Saint-Foy-la-Grande, and the hospital had recently had a new CT scanner installed and they said they’d give me one of the first scans using their shiny new machine. I waited for the results but they told me they were sending me to another hospital in Libourne, 30 miles away, but didn’t say why.
When I arrived, there was a long wait until I had an MRI scan and was still being kept in the dark about what they had seen. My thoughts were pragmatic; I knew I would find out soon enough, they clearly wanted to be sure of their findings before reporting back to me. At this point my vomiting was stable, I was walking and talking normally and felt like myself but still I was advised to wait around the hospital.
It was 1am and I had spent 18 hours hopping to three different hospitals, the final one in Bordeaux where I was greeted by a surgeon. "Just so you know, you’re going for surgery," he informed me.
That’s how I found out I had a brain tumour.
"I was completely shocked. In my body, I felt OK but the news proved that was far from accurate."
At the time I was 27. I called my parents who were at home in Herefordshire. They rushed to be with me and we waited for more tests in France. I expected to be taken for surgery but they decided this could wait and my case was no longer an emergency. My parents drove us back to Ledbury in the UK to seek treatment with the NHS. I went straight to Southmead Hospital in Bristol on the advice of my medically trained brother.
I checked in at A&E and handed over my documents including the scan images taken in France. That’s when I began to feel scared and overwhelmed. I had time to reflect and my diagnosis suddenly felt real.
"I knew about the disease after watching someone I knew in France die from it. I was scared I was going to die."
A month after finding out I had a brain tumour, I was in surgery on 30th May 2019 to remove the golf-ball sized tumour and doctors confirmed it was a low-grade pilocytic astrocytoma. Since then, my scans have been clear with no signs of recurrence, which I understand is realistic of this type of tumour.
Because of where the tumour was located, near my optic nerve, I live with partial blindness on the right side of both eyes due to nerve damage caused by the tumour and operation. This means that I sometimes have to think about where I sit or stand when I’m around people so I can see them otherwise they can often think I’m ignoring them.
Every stable scan has been a relief, helped me put things into perspective and celebrate milestones when I reach them which is what brought me to support Brain Tumour Research.
In May 2021 I took part in the charity’s Jog 26 challenge which gave me an opportunity to get back into running. Towards the back end of 2023, I realised it was five years since my diagnosis and I wanted to mark that through taking on my biggest ever physical challenge.
I’ve just completed the Great Welsh Half Marathon in a time of 1:59 and in May 2024, my partner Jo and I will be tackling the Wadi Rum Half in Jordan. With temperatures around 30 degrees during the day, they often plumet by more than half during the night time on mostly gravel and sandy terrain; it’ll be testing of my physical and mental fitness.
"Sharing the same name as the popstar Tom Parker, watching his story unfold, it did hit me hard."
I already had my operation by the time I read about Tom’s story. We were similar ages and it was tough to comprehend we were both so young, diagnosed with brain tumours.
I witnessed what he did for the brain tumour community, selflessly sharing his experience which made learning of his death incredibly heartbreaking. I’m proud to be able to continue a legacy he established.
Tom Parker
March 2024
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Tom’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure