Tom Weatherstone was diagnosed with an astrocytoma after suffering from symptoms such as headaches, vomiting, blurry vision, and tremors in his hand. The 21-year-old from Sheldon in Birmingham had surgery followed by radiotherapy and chemotherapy. Twelve months later, an MRI scan revealed a second tumour. Tom’s sisters Josie and Gemma are now taking on the 88 Squats a Day in July challenge to raise money for Brain Tumour Research.
Tom tells his story…
At 21, I was just living a typical young adult life, working in a nightclub, staying up late, surrounded by loud music and flashing lights, and often burning the candle at both ends. So, when I started waking up with headaches, throwing up in the mornings, having blurry and pixelated vision, and noticing a tremor in my hand, I just put it down to my lifestyle. I assumed it was the noise, the lights, maybe overindulging a bit with mates, as you do at that age.
Retrospectively, the first sign came earlier, during a family holiday in Perranporth, Cornwall the summer of 2022. One day, I walked back from the beach and got lost but it was a place I had known my whole life like the back of my hand. At the time, it seemed odd, but we didn’t think much of it.
Looking back, it was the beginning of something none of us could have imagined.
Eventually, my family convinced me to contact my GP. I had a phone consultation and was told I had a vitamin D, B12 and folic acid deficiency. They prescribed some supplements and that was that.
But things didn’t improve. Then in March 2023, I had a skin tag that became infected. My uncle kindly paid for me to see a private doctor. While I was being examined, the doctor noticed my hands shaking. He asked me to hold them out and looked really concerned. He sent me for blood tests and referred me for a CT scan, which I had at a mobile unit at Washwood Heath.
I didn’t really understand why I needed a scan. It was just a tremor, I didn’t think it was anything that serious.
But when the results came back, within the hour, I was told to get myself to Heartlands Hospital Birmingham A&E straight away because they’d found a mass on my brain.
I went with my parents and waited 12 hours to be seen. I had more bloods taken, another CT scan, and a sight test. By early the next morning, they confirmed there was something there. I was transferred that same day to the Queen Elizabeth Hospital in Birmingham, with my brother Sam by my side.
I remember the anxiety building. I was worried, concerned, and scared. I just wanted to know what was in my head that was causing so much alarm.
When we got to the Queen Elizabeth Hospital, COVID-19 rules meant my brother Sam couldn’t stay so I was taken up to a ward alone. A doctor came and told me I had a brain tumour and that I’d need a shunt fitted the next day to relieve pressure on my brain. They said the risks of surgery was loss of sight, mobility, memory or even speech loss.
I was on my own with no family. I didn’t know what to say. I rang my family straight away, I was in shock, devastated. I’d gone to get a skin tag checked and now I was in hospital with a brain tumour.
On 1 April 2023, I had surgery to fit the shunt, a thin tube inside my brain to drain excess fluid. They also took a biopsy during the operation. I had papilledema, which is swelling of the optic nerves, caused by the pressure in my brain. That explained the starry, pixelated vision I’d had for weeks.
I was terrified, everything was happening so fast. I didn’t even realise the surgery was over until I touched my head and felt the bandages.
A few days later, I went home to recover and waited for the biopsy results.
On 13 April, I returned to the Queen Elizabeth hospital with my parents to hear the results. I was told I had a astrocytoma grade 2 going into grade 3. The doctors recommended a debulking surgery, so I had another MRI with contrast dye, but I had an allergic reaction to the dye, which caused an infection and delayed my surgery.
Eventually, on 22 May, I had the debulking surgery to remove as much of the tumour as possible, but I lost the peripheral vision in my right eye due to the papilledema.
It was hard, but I stayed positive. Apart from a swollen eye and my scar, I felt okay. It was a relief to have had the surgery.
Five days later, I was back home recovering. But when I went in for results, the doctors told me what no one wants to hear, that the tumour was a grade 4.
I put on a brave face, but inside I was crushed. I stayed positive, I had to, but it wasn’t easy.
I started six weeks of radiotherapy and chemotherapy which knocked me sideways. I was so tired, and I slept all the time. My hair started falling out, so I shaved it all off. I’d had long hair before, so this in a way felt like a new start.
I continued chemotherapy for another 12 months. Then in December 2024, I began to lose my balance. I went back to Queen Elizabeth Hospital where another MRI scan revealed a second astrocytoma, this time at the base of my neck.
I was devastated and in shock. The original tumour was stable, but now there was another.
Due to its location, surgery wasn’t an option, so the doctors prescribed a lower dose of chemo to manage it.
My latest scan in May 2025 confirmed the tumours are still there and a third has been found which isn't responding to treatment. I’m currently undergoing three-monthly scans, and I still get anxious every time. I don’t respond well to needles or the MRI contrast dye, and the scan itself is a claustrophobic experience.
But I stay positive. I play my guitar, and I try to focus on what I can still enjoy. “My brother Ben has now become my full-time carer, and I’m so thankful to him for being there for me every step of this journey, I couldn’t do it without him.
It’s not all doom and gloom. I try to make the most of life and appreciate the little things more now.
My sisters Josie and Gemma have been amazing. They did 200K in May, raising over £600, and they're now taking on the 88 Squats a Day in July challenge to raise more funds for Brain Tumour Research. They’re doing it to raise awareness so others won’t go through what we did.
Tom Weatherstone
June 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, 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.
