Libby Woolaston (Wooly), 32, a devoted mum of three from Wolverhampton, faced months of uncertainty and dismissal before being diagnosed with a rare and aggressive brain tumour. After enduring worsening symptoms and a life-changing diagnosis, she is now using her experience to raise awareness and campaign for more research into brain tumours.
Libby tells her story…
In the summer of 2024, I started experiencing headaches and I was adamant that something wasn’t right. I went to the doctors and had appointment after appointment from May until September, but I kept getting told it was menopause, hormonal, or depression. One doctor even asked me if I had children and said, “Do you not think it’s just your children giving you a headache?’”
As soon as I left the surgery, I burst into tears. I felt dismissed and unheard. I knew it wasn’t my imagination. I even asked myself if it was because I was a woman that I wasn’t being taken seriously.
Then in October, I saw a female doctor and she finally listened to me. I shared all my symptoms, including leaking breast milk even though it had been two years since I breastfed. These were the same symptoms I had told other doctors, but this time it struck a bell. She immediately said it wasn’t normal and that she was going to check me for a pituitary tumour. Strangely enough, my partner and I had come across that online when searching my symptoms.
She referred me and thank goodness she did. The results came back that I did have a pituitary tumour, although I was told it was slightly larger than normal and nothing to worry about.
It was a relief that someone had finally listened to me. I had started to believe I was going insane and was experiencing depression because I was being ignored.
I was referred to endocrinology in October 2024 to New Cross Hospital in Wolverhampton, but things got worse. The headaches became unbearable. Even though I asked for surgery, I was told pain medication was the best option because the tumour wasn’t life-threatening and could be managed. I was on constant painkillers and found it difficult to function. I couldn’t get out of bed or be a mum – my quality of life was awful.
The pain became so intense that I was referred to Birmingham Hospital in October 2024, and four months later I finally had an appointment for March 2025. By then, the pain was horrendous. In March 2025, I went blind in my right eye and doctors discovered the tumour had grown and was pressing on my optic nerve.
I was sent for an urgent MRI the same day and told I couldn’t go home, they needed to operate the next day. The tumour had grown from 1.5cm to 5cm in just one month.
I had a four-hour surgery the next day and they managed to remove all of the tumour. The surgeon removed it through my nose, so luckily I have no scars. I went home a week later.
At the time, I didn’t know it was cancer. I was actually excited to finally have the tumour removed so I could get back to my normal self, be pain-free, and enjoy life with my family again.
After surgery, I remember walking down the hospital corridor with my partner Aiden and suddenly thinking, “What if it’s cancer?” He reassured me, saying they would have told us, but something inside me knew something wasn’t right.
Four weeks later, the results came back. I had an atypical teratoid rhabdoid tumour (AT/RT). When the surgeon asked me how old? my children were, that’s when I realised how serious it was - my tumour was cancerous. This type of tumour usually only occurs in children under three, and they couldn’t explain why I had it as an adult or how best to treat it.
In a matter of weeks, it went from headaches to a catastrophic brain cancer diagnosis.
I met my oncologist, and she told me I would be fine but couldn’t give me a prognosis because there isn’t enough research on this type of tumour in adults. It has only really been studied in children.
Google can be your worst enemy. When Aiden and I looked it up, there was so much information, but I chose not to dwell on it and to keep moving forward.
For a long time, I didn’t tell people what type of tumour I had because I didn’t want it to become my identity. My children are so young, and they wouldn’t have understood.
I had 30 rounds of radiotherapy, which was horrendous. I also had chemotherapy, which I managed, although I did lose my hair. I still have lasting damage from the radiotherapy.
As a result of craniospinal irradiation radiotherapy, I now live with several lasting side effects. I developed Lhermitte’s syndrome due to damage to my spinal cord, which causes unpleasant, whole-body electric shock sensations, often triggered by walking or even simple head movements. I also experience cognitive difficulties, where my memory isn’t as sharp and my speech can become jumbled. I might call a plant pot a pencil or the TV a toilet.
We do try to laugh about it at home, with the kids joking that “mummy’s brain isn’t braining again,” but it’s also a stark reminder of the impact such intensive treatment has had. Alongside this, I continue to suffer from frequent headaches, and because my surgery was performed through my nose, I now have permanent damage that has led to chronic sinusitis.
I remember reading the list of side effects before treatment and thinking, how is this even allowed? The impact on the body is huge, and treatments haven’t improved enough. But there were no other options.
At my last MRI scan in February 2026, I was given the all clear. I still haven’t found another adult in the UK who has had AT/RT.
Now I have scans every three months. My eyesight has returned, and although I still get migraines, they are not as severe as before.
It’s horrifying to think that young children are going through such harsh treatments. Something more needs to be done. The brain is so complex, and we need more funding and research to understand why these tumours occur.
I’m taking on 200k in May Your Way to raise awareness and vital funds for Brain Tumour Research, and I encourage anyone to get involved. I want to live to see my boys – Miller, 10, Dax, 7, and Forest, 4 – grow up, and the only way that can happen is if we see breakthroughs in treatments and cures.
To anyone going through a diagnosis, I would say keep going and stay optimistic. I know how lucky I am to have survived. Having cancer has taught me how to love life again.
Libby Woolaston
April 2026
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 Libby’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.
