Nicola Shaw

Nicola Shaw, a 38-year-old teacher from Manchester, was living a life full of adventure and purpose, teaching abroad and travelling to all seven continents, when she received a life-changing diagnosis in February 2023. After months of unexplained facial pain, Nicola was told she had a meningioma located in a dangerous position near her brain stem and optic nerve. Despite the challenges of surgery, radiation, and ongoing recovery, Nicola’s resilience and determination have been unwavering. Now, she is preparing to trek 50 kilometres across the Sahara Desert to raise awareness and funds for Brain Tumour Research, hoping to make a difference for others facing similar battles. 

Nicola tells her story… 

Life was full of adventure. I’d been teaching abroad for 12 years, living in places like Chicago and now Turks and Caicos. I’d travelled to 66 countries and even made it to Antarctica – a dream come true. But in October 2022, 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, the city I was teaching in at the time. When the neurologist suggested I needed an MRI, I hesitated, thinking it was unnecessary. 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 they insisted it was true and told me to see a neurosurgeon as soon as possible. I dreaded phoning my parents. We speak like clockwork, so any unexpected call would immediately set off alarm bells. Breaking the news to them was one of the hardest things I’ve ever done. 

Luckily, the father of a student in my class was a neurosurgeon at the hospital I had been referred to, and he helped me get an appointment. When I met with him, I had my parents on FaceTime and my friend, Jen, by my side for support. He explained that my tumour was a nine out of ten in terms of difficulty to remove and that only 2% of cases are found in this location. It didn’t fill me with much hope. 

Initially, I was told I needed radiation, but when I arrived at the hospital for the treatment, they advised me to seek a second opinion, as I was young enough to undergo surgery instead. It was overwhelming with one doctor saying radiation and another recommending surgery. After speaking with an onsite neurosurgeon, he gave me the contact details of Dr Chandler at Northwestern Hospital in Chicago. When I met Dr Chandler, he was calm and softly spoken. He reassured me that while the tumour was complex, it was more of a seven out of ten in difficulty, and he believed surgery was the best option. Northwestern was a Brain Tumour Institute hospital, ranked as one of the best in the country for cases like mine. 

Before surgery, I put on a brave face for my parents but essentially said goodbye, just in case. But when Jen came in, I couldn’t hold back my tears and I was terrified. I told Dr Chandler that if he didn’t think he could remove the tumour, he should stop and save me. I desperately wanted to live. Then the oxygen mask went on, and everything faded to black. 

After a 10-hour surgery in April 2023, I woke with 50 staples in my head, overwhelmed by gratitude – 95% of the tumour was gone, and I was alive. 

I had naively thought that once the surgery was done, life would return to normal. But recovery was tough. My optic nerve had been affected, leaving me with double vision, and my jaw never fully healed, even after painful botox injections prescribed by the surgeon. For six weeks, I struggled with memory loss, relying on my parents and Jen to remind me of things I had no recollection of. 

Just when I thought the worst was over, my three-month scan in July 2023 revealed that the tumour had grown by six millimetres. I was stunned. Even my surgeon – one of the best in his field – was shocked. He explained that if these tumours grow, they typically expand by only two millimetres per year. I kept asking myself why this was happening to me, why this nightmare wouldn’t end. It hit me that this was my new reality. I decided to seek therapy, but finding a therapist who specialised in brain tumour patients was difficult.  

By October, the tumour has grown another 11-millimetres. 

My neurosurgeon recommended Gamma Knife radiation, despite usually avoiding it for patients under 50. He assured me it was the best option. Although my January 2024 scan showed no growth, I still had to prepare for the treatment. 

It turned out to be the worst day of my life, and that’s saying a lot considering I’ve had brain surgery. I had researched the procedure, so I knew it would involve being completely still under a mask while they mapped the radiation. But nothing could have prepared me for the experience. 

I arrived at 5am for an MRI, then waited in a private room where the nurse offered me painkillers. "As much as you can give me," I said. My biggest fears are claustrophobia and needles, and both were about to be 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. 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.  

The whole Gamma Knife radiation process was two and a half hours of sheer agony. 

Once the frame was on, I had another MRI before the radiation itself – two hours of being completely immobilised, with my head screwed to the table, and 90s pop music (which I chose) to distract myself. Halfway through, they gave me a break before finishing the session. The relief afterwards was immense, but the pain was unbearable. My head throbbed where the screws had been, and the pressure felt relentless. 

The constant hospital visits and uncertainty became overwhelming, so I quit my job and returned to England to focus on recovery. For nine months, I had nothing but time to heal. Eventually, I found a therapist who specialised in cancer patients, and those sessions helped me cope. 

My scans showed stability, first at three months, then at six. Now, a year after the radiation, my tumour remains stable. It’s been a long and unpredictable journey, but for now, I hold onto hope. 

Now, I’m channelling my strength into raising awareness and funds for Brain Tumour Research. 

That’s why I took on the six-day Sahara Trek challenge. I love to travel, and I am not afraid of a challenge. My mindset is that nothing can be worse than brain surgery. I’ve survived that, radiation, 11 MRIs, and having titanium in my head. If this helps raise awareness and funds, why not? 

I’ve already raised over £5,600 – enough to fund two days of research – but I won’t stop there. It angers me how underfunded research in brain tumours is, especially as a survivor. Unless you or someone you love has been affected, you may not realise how dangerous these tumours are. I’m determined to change that.  

Too many lives are lost, and survivors face lifelong challenges and uncertainty. I’m proud of what I’ve raised so far, but we urgently need a cure for those who won’t be as fortunate as I have been. 

Showing the good days and the bad, I also want to give people hope that there is life after a brain tumour diagnosis.