Photography and sewing enthusiast, Claire Sutton, is a 40-year-old nurse from Southport. In May 2020, she suddenly experienced a severe headache that left her fearing for her life. After several hospital appointments and scans, she was diagnosed with a colloid cyst of the third ventricle, a non-cancerous brain tumour. This brought back painful memories of her father, Mike, who had died in 2007 after battling an aggressive glioblastoma. Claire underwent surgery in September 2020 to remove the cyst obstructing the flow of cerebrospinal fluid, which was very successful. Despite experiencing some post-surgery balance issues, Claire is doing well and grateful for the progress she has made.
Claire tells her story…
I’ve lived in Southport my whole life, except for a brief stint in Liverpool for university. I trained as a nurse at Edge Hill University, and a year in Cheadle working at a local hospital, and that career would later influence how I handled a journey I never expected to take.
I became a nurse because my dad, Mike, died in 2007 from a glioblastoma, an aggressive brain tumour. He was such a loving and thoughtful man who died far too soon at the age of 53. That experience made me want to help others facing similar situations, a calling that felt ironic given what would later happen to me.
In May 2020, during the peak of the pandemic, I noticed something wasn’t right. I was trying to find a new TV for my mum online when suddenly, I was hit with the worst headache I’d ever experienced.
The pain was instantaneous and so severe, I genuinely thought I was dying.
I texted my mum "help," and she rushed to me, and called an ambulance which took me to Southport Hospital. After a CT scan, the doctor held my hand, which was both comforting and terrifying, as if preparing me for bad news. She told me something showed up on the scan, but they couldn’t tell if it was a tumour or a bleed, so I was admitted immediately.
It was especially hard that my mum couldn’t come with me because of COVID restrictions. She had to watch me leave in the ambulance, unable to support me in the way she wanted to. It was heart-breaking.
Over the next few months, I had more CT scans, MRIs, and even a lumbar puncture to rule out other conditions. Eventually, they discovered that my cerebrospinal fluid (CSF) was obstructed, which was contributing to my headaches. Not knowing what was causing the obstruction, I took matters into my own hands. As a nurse, I requested all my notes and scans, then began researching. I spent hours reading medical articles and joined online support groups. The only similar case I found was about a Canadian ice hockey player who had died from similar symptoms, which wasn’t particularly helpful.
Later, I had a virtual appointment with a neurosurgeon, and I asked countless questions. She answered each one patiently and ordered an MRI CSF flow scan.
During the scan, the person who was doing it suddenly stopped, ushered me out of the machine and was frantically asking me if I was okay, which I honestly was as I wasn’t feeling any headaches or nausea beyond those I was feeling on a daily basis at that time. He kept asking me this until he decided to continue the scan. At the end, he sat me up really slowly and asked me if I had my surgery date booked. Alarm bells were ringing at this point because no-one had mentioned that at all, and he still looked panicked. Following this, I had a call where the doctor asked me to go in for the appointment. I knew this meant surgery as the previous appointment was virtual, so the only reason they’d need me to come in would be to sign a consent form.
At the appointment, I learned the reason for the person’s panic during the MRI was because the CSF in my brain hadn’t just been blocked, it stopped flowing altogether. I was then told that I had a colloid cyst, a non-cancerous tumour, which was causing the obstruction and my headaches.
The surgery was scheduled for 7 September, 2020, at The Walton Centre where three neurosurgeons were working on me for about nine hours. Before the surgery, I was also assessed by a neuropsychologist to test my memory and cognition. I went into this thinking about the job that I love, how I would probably need to change careers because of my medical issues, and all sorts of other ways life would change. Thankfully, the surgery was a success, and everything went well.
Recovery wasn’t as smooth as I’d hoped. I thought I’d bounce back quickly, but my balance was off. Even simple tasks like loading the dishwasher made me dizzy, and I had to give up cycling, one of my greatest joys. Living with my mum during the initial weeks after surgery was invaluable, as recovery from brain surgery is tough, even with the best support.
Over time, I regained strength and returned to part-time work, gradually building toward full-time. Follow-up scans show no residual issues, and while the chance of regrowth is low, I’ve had to accept my balance problems are permanent, making adjustments like relying on taxis instead of walking. Despite the challenges, I’m doing well and grateful for my progress.
During my research, I came across heart-breaking stories about other people, like the Canadian ice hockey player who died, but those stories weren’t supported by reputable, fact-based organisations or experts. It’s important not to rely on personal experiences alone, everyone’s journey is different. We need to focus on sources with a proven track record of providing accurate, evidence-based information.
Also, trust your body and keep pushing for answers. If something feels wrong, get checked out, even if it’s rare. You know your body better than anyone.
Finally, after surgery, give yourself the time to heal. It’s not easy but recovery is a journey, and it’s important to be kind to yourself along the way.
Looking back, I’m grateful for the care I received, and I don’t take my life for granted. The NHS saved my life, and I owe my recovery to them. As hard as it’s been, I’ve learned to value my health, my family, and the support I’ve received. It’s made me stronger, and I know I’m lucky to be here today.
Claire Sutton
December 2024
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 Claire’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