A woman who thought her facial pain was initially due to stress was diagnosed with a rare brain tumour. Nicola Shaw, 38, had just returned from a dream trip to Antarctica when she started getting a “tingling” in her left cheek.Initially she put it down to stress but it spread to her nose, eye, and head and became so intense that she would keel over, clutching her head in agony.
Nicola went to see a doctor and was told she needed an MRI which she thought was an “overreaction” but it revealed meningioma – a tumour in a rare and dangerous location near her brain stem and left optic nerve. She had a 10-hour operation which removed 95% of the tumour but the tumour then grew back by 17 millimetres in six months.
Nicola had Gamma Knife Radiotherapy – which precisely targets radiation to destroy tumours while sparing healthy cells – which took a huge toll on her. Now stable she has regular scans to monitor her tumour she is trekking across the Sahara Desert to raise money for Brain Tumour Research.
Nicola, an early years teacher, from Manchester, said: “I started experiencing tingling in my left cheek. At first, I thought it was just stress, but by January 2023, the pain had spread to my nose, eye, and head. It was so intense it would stop me in my tracks, leaving me keeled over, clutching my head in agony.
“A friend urged me to see a doctor, so I went for a consultation and was referred to a neurologist. At the time, I thought this was an overreaction, but I went along with it and saw a specialist at a private hospital in Chicago. When the neurologist suggested I needed an MRI, I hesitated, thinking it was unnecessary and over the top. Eventually, I gave in, never expecting what was to come.
“The scan revealed a meningioma, a tumour in a rare and dangerous location near my brain stem and left optic nerve. I was in denial and insisted they had the wrong person, but the truth was evident in the scans, and I had to see a neurosurgeon as soon as possible.”
Nicola had returned to her teaching job in October 2022 when she started to experience pain. After her diagnosis in January 2023 she was told she would need a surgery to remove the tumour.She said: “Luckily, the dad of a student in my class was a neurosurgeon at the hospital I had been referred to, and he helped fast-track my request.
“He explained that my tumour was a nine out of ten in terms of difficulty to remove, and only 2% of cases are found in this location. It didn’t fill me with much hope, but after a second opinion, we decided to operate.”
She underwent a 10-hour surgery in April 2023 at Northwestern Hospital in Chicago, one of the country’s leading brain tumour institutes. The operation was successful but Nicola struggled with double vision, memory loss and jaw pain and tried botox to try and heal it.
At her three month scan she was told her tumour had grown back by six millimetres and by October it had grown by 17 millimetres in six months. Her surgeon had no explanation for the growth but recommended Gamma Knife Radiotherapy – despite concerns about using it for a patient under 50.
Nicola said: “The Gamma Knife procedure was the worst day of my life. I requested as many painkillers as the staff would allow and waited to have my fears of needles and tight spaces tested to their limits.They had to insert four screws into my head, numbing each area with three injections per screw. The pain was excruciating and I screamed and begged them to stop.
“When they reached the fourth screw, they had to avoid my titanium plate and in doing so, clipped my eyelid, causing it to bleed and giving me a black eye and scar. Once the frame was on, I had two hours of being completely immobilised, with my head screwed to the table, as the radiation went to work. The relief when they finished was immense, but the pain was unbearable. My head throbbed where the screws had been, and the pressure felt relentless.”
The experience took a huge toll on Nicola, forcing her to leave her job and return to the UK to focus on her physical and mental recovery. She spent the next nine months healing while attending sessions with a therapist who specialised in supporting cancer patients. Now, with regular scans to monitor her brain a year after the radiotherapy, the tumour is fortunately stable.
Now she remains determined to make a difference and has already raised over £5,600 for Brain Tumour Research in preparation for her 50km charity trek across the Sahara Desert on March 27, 2025. The six-day challenge will see Nicola endure extreme heat, sand dunes and long, strenuous days, alongside 15 others who have a close personal experience with brain tumours.
She said: “After brain surgery, radiation and countless scans, it can’t be worse than what I’ve already been through. I also love to travel and love a challenge, so this trek sounded perfect to me.
“It makes me angry knowing just how underfunded research into this disease is, especially as someone who has survived a brain tumour. I feel like unless you or someone you know has gone through it, no one is aware of how dangerous these tumours are, so I’m determined to raise awareness too.
“It is killing so many people and those who survive are left with lifelong problems and worries about their future. I’m so proud of how much I’ve raised so far because we desperately need a cure for the thousands who won’t be as fortunate as I have been.”
Carol Robertson, National Events Manager at Brain Tumour Research, said: “We are incredibly proud of Nicola for taking on such an extraordinary challenge and we’re in awe of her resilience in tackling her brain tumour. Trekking across the Sahara Desert is no small feat, and her determination reflects the courage and resilience we see in so many of our supporters. Every step Nicola takes will help us move closer to our mission of improving outcomes for brain tumour patients and ultimately finding a cure. We wish her and the team the very best of luck on this remarkable journey.”
To support Nicola’s Sahara Trek challenge and donate to Brain Tumour Research, visit: https://www.justgiving.com/page/nicola-shaw-50kmtrek