When Gabrielle from Knebworth started to experience déjà vu, confusion, and visual disturbances, doctors told her it was likely brought on by years of stress and she was told to breathe into a paper bag. When her symptoms worsened in February 2022, she was given an MRI scan which revealed she had an astrocytoma. Gabrielle, 50, has since undergone surgery followed by radiotherapy and chemotherapy and is back to full-time work as a hearing therapist and lip-reading teacher. She is sharing her story to help raise awareness of the shortfall in funding in research into brain tumours.
Gabrielle tells her story…
My brain tumour diagnosis in 2022 followed a period of great stress. Around 2017 I left my husband and began a relationship with my now wife, Alina. It was a difficult time for the whole family, including my two, then teenage children. My mother died of dementia in 2018. A year later, my daughter was diagnosed with epilepsy after having a seizure the second time in her life.
Sometime during 2019 I began to get a strange sense of déjà vu, like I’d been in this moment before. This was teamed with a sensation of unreality which manifested during conversations with colleagues, where people looked like cartoon versions of themselves.
Soon after, routes I drove daily became unrecognisable. I could still see, but occasionally would forget where I was.
Considering my daughter had been diagnosed with epilepsy, I went to the GP to get checked out. They confirmed it would be a coincidence for me to be diagnosed with epilepsy, but to err on the side of caution, they referred me to a neurologist. I made an appointment via my private insurance. I described everything that had happened from my marriage breakdown to the physical symptoms and how I had been the carer for my dying mother at the same time of my daughter’s health concerns, and the neurologist said everything I was experiencing was a stress response. He told me to go home and breathe into a paper bag and get some counselling.
I felt relieved. I thought to myself; thank goodness it’s nothing serious.
My visual disturbance worsened. I began seeing zig zag patterns along with spots of colour. I went back to the GP who said I was having silent migraines. There was no pain in my head, but what I described was the aura often associated with a migraine. I was placed on beta blockers which I remained on over the next two years.
In late 2021, I moved to Knebworth, Alina and I bought a bungalow and began a huge renovation project. I booked in to see my new GP as I felt the beta blockers weren’t working. I was referred again to neurology who said migraines usually last 20 minutes to two hours and what I had been experiencing were seizures.
My heart dropped and I instantly thought I had a brain tumour.
At the beginning of 2022, I had an MRI scan, and the results confirmed my worst fears. I was diagnosed with a grade 2 astrocytoma. I was filled with panic.
The consultant told me it was slow-growing, and I’d probably had it for years. I was referred to the National Hospital for Neurology and Neurosurgery in Queen Square, London and felt calm that I was going to find out how this disease could be treated.
The neurosurgeon said the tumour’s diffuse shape was like a star and deemed it inoperable. He went on to explain that it would be impossible to differentiate between brain and tumour and I was told at some point I would need radiotherapy.
I really thought, I can’t just sit here and wait to die.
I started to research treatments all over the world and came across a charity called Astro Brain Tumour Fund which helped me seek a second opinion.
I found it hard to navigate the conflicting information. After the neurologist initially being warned I could be left with blindness and paralysis, it was obvious there was more risk than reward with an operation. I was also told that the earlier and more aggressive we treat my tumour, the better the outcome.
Before my diagnosis, Alina and I had discussed our life plans. She asked, if we were to ever marry, what type of engagement ring would I like. After I found out that I had a brain tumour, I sat her down and told her that she could go and live her life free of my newly diagnosed medical condition. During a very tearful conversation she confirmed she wasn’t going anywhere and sure enough she proposed.
We married at Stevenage Registry Office 14 September 2022 and four days later celebrated with friends and family in our garden.
Whilst planning for a wedding, I decided to go ahead with surgery at Addenbrookes Hospital, Cambridge, in February 2023 during which 90-95% of my tumour was removed. I came away without any of the side effects that I was previously warned about, only some loss in part of my vision.
The whole experience was hugely traumatic. The pain was excruciating and the large dose of steroids I was taking changed my personality. I talked non-stop and began walking obsessively and felt very depressed.
I had 33 sessions of radiotherapy which caused some hair loss and began an oral course of chemotherapy during which I needed a few platelet transfusions. Eventually I had to stop this treatment altogether due to a low platelet count.
They tested part of the tumour that was removed and found 20% of it was a grade 3, and it was now cancerous.
This news hit me hard. I went home and rocked in a chair. I felt like I lost my mind after everything I’d been through.
Treatment ended in October and a follow up MRI showed the remaining tumour was stable. During the same appointment I was told that my tumour will most likely come back. In July 2024 a follow up scan showed a 4mm area of concern. The neurologist can’t tell what it is and it’s too small for a biopsy so I’m being monitored with scans every three months. Should it grow further, my neurologist will decide on if and what treatment I can have.
The thing with a brain tumour diagnosis is that you feel like you’re on a rollercoaster ride but for me, every twist and turn increases the fear of imminent death.
This November, me, Alina and my two children are taking part in Brain Tumour Research’s Facebook challenge, 99 Miles in November. As a family, we will complete the distance by walking. I catch the train to work and often get there early, I’ve been pacing up and down the platform a few times and within 20 minutes I cover a mile at a time.
When I was given my diagnosis, I knew I wanted to support people with all types of brain tumours. If I can help to raise awareness of how little is invested in research into the disease, then I will do that for as long as I can. People must know about its historic underfunding so they can donate and be part of the change.
Gabrielle Renee
November 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 Gabrielle’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