Holly Webster, 24, from Nottingham, began experiencing vomiting, fatigue and problems with her vision and balance at the age of four. A visit to the optician revealed a squint, leading to further tests and scans at Queen’s Medical Centre, where she was diagnosed with a pilocytic astrocytoma. She underwent surgery to remove the tumour, but complications followed, including meningitis and hydrocephalus, which led to a shunt being fitted to relieve pressure on her brain. After years of treatment and monitoring, Holly was given the all-clear in 2018.
Holly tells her story…
My journey with a brain tumour began before I even started school. When I was four years old, I became constantly tired, was being sick frequently, and had trouble with my balance. I also started falling asleep a lot and lost a noticeable amount of weight. Naturally, my parents became really concerned.
After a visit to Adams Opticians in Arnold, a squint was detected in one of my eyes.
That was the first real indication that something more serious might be going on. I was referred for further tests, and eventually, I was sent to Queen’s Medical Centre in Nottingham. Scans there revealed a brain tumour. It was later diagnosed as a pilocytic astrocytoma – a slow-growing, non-cancerous tumour. At the time, no one could say for certain what the outcome would be. My parents have since told me that doctors warned them to prepare for the worst.
I underwent surgery to remove as much of the tumour as possible. But shortly after, complications arose. My wound wouldn’t heal properly and I was re-admitted to hospital, where I was diagnosed with meningitis. Further tests also revealed that I had hydrocephalus, a condition caused by damage to the brain’s ventricles, which meant fluid wasn’t draining as it should. At the age of six, I had a shunt fitted to manage the pressure, and that’s something I’ve lived with ever since.
In 2009, when I was about eight, the scans showed the tumour had started to grow again.
I was referred to a hospital in Sheffield for stereotactic radiosurgery, a highly targeted form of radiotherapy. It was still quite new at the time, especially for children, but thankfully it worked.
A few years later, however, I developed Bell’s palsy. One side of my face stopped moving properly. Doctors believed it was caused by bleeding from the tumour as it broke down, likely a delayed effect of the radiotherapy. I was placed on steroids and gradually recovered, but it was another difficult chapter in my journey.
Then, at 17, I became unwell again. My parents took me to A&E several times, but it took a while for anyone to realise what was happening. Eventually, an MRI showed that my shunt had failed. The pressure in my brain had built up to dangerous levels, and I needed emergency surgery to have it replaced. It was an incredibly frightening time for all of us.
Later that same year, in October 2018, I received the best news I could have hoped for: the tumour was gone and I was given the all-clear.
We went out to celebrate with a meal, but I remember feeling a bit overwhelmed. After living with a brain tumour for most of my life, it felt surreal. When I had my final scan in 2019, I cried. It was a huge relief, but it also felt like the end of a chapter that had been a part of me for so long.
That experience shaped who I am today. I’ve always been someone who likes to set goals and challenge myself. A few years ago, I trained for and completed a 10k run. Now I’m taking on something even bigger: a skydive.
I’ve wanted to do a skydive for years, and when I saw the Jump for Hope event with Brain Tumour Research, I knew it was the perfect opportunity. It’s been on my bucket list for over a decade, and I’ve already raised more than £1,600. I’m proud to be doing this, not just for myself, but for others too.
Brain tumours kill more children and adults under 40 than any other cancer, yet they still receive just 1% of the national spend on cancer research.
That’s shocking. The brain controls everything we do, and yet it remains one of the least understood parts of the body. We need more funding, more research, and more hope.
Taking part in this challenge is my way of giving back. I hope that by sharing my story, I can help raise awareness and show others that they’re not alone. There is always hope.
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 Holly’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.
