Thirty-nine-year-old Sam from Walthamstow, London, was first diagnosed with a grade 2 astrocytoma in 2010 when she was 26, after suffering a seizure out of the blue. In 2017, her plans to start a family with husband, Angus were stopped when she was told her tumour had progressed to a grade 4 glioblastoma (GBM). Despite undergoing two operations, which left her having to learn how to walk, Sam is now on chemotherapy which she is likely to be on for the rest of her life. She is sharing her experience of living with a brain tumour and thirst for life to raise awareness of the disease.
Sam tells her story…
My brain tumour diagnosis came in 2010. I was 26 and had been solo travelling around Central America for three months when I had a seizure for the very first time. I was sleeping on the bottom bunk bed and thought I was experiencing an earthquake as my body shook.
I didn’t think much of it, and carried on with travel plans when I had a second seizure. This time I was on a minibus in the highlands of Panama. Next thing I remember is waking up in hospital. Sat next to my bedside was the passenger who was beside me on the bus. I was shocked and surprised. I had no idea what had happened and didn’t know it was another seizure. The kind stranger explained to the hospital staff what they had witnessed, and it was clear I had passed out and my body had fitted. I was given anti-seizure medication and carried on travelling, returning home three weeks later as planned.
When I got back home to London in November 2010, I went to the GP who referred me to Guy's and St Thomas' NHS Foundation Trust in London Bridge for a CT scan. Despite medication, I was still having seizures which only happened at night whenever I was tired, and it became a vicious circle.
Soon after my scan, I had a voicemail on my mobile during my cycle home from work. I listened: ‘we’ve got your results and they’re not very good, we need you to book an appointment as soon as possible.’
They told me there was a solid mass on my brain; a low-grade astrocytoma brain tumour. I was given two approaches to move forward: watch and wait or surgery. At this point, my tumour was slow growing; they didn’t know how long I had it for but knew it wouldn’t kill me tomorrow.
I decided to go ahead with a craniotomy in March 2011 at Queens Square Hospital in London. The idea of it getting bigger and not having seizures spurred on my decision.
They were kept under control with medication, and I soon regained full movement in my face, however, my seizures started coming back at night; a sign of the tumour growing.
I had to surrender my driving licence, which didn’t impact my life a huge amount as living in London, transport was accessible. I was able to live my life normally and had six-monthly scans. I began a graduate scheme in advertising which I had delayed starting due to brain tumour treatment completely forgot about my brain tumour diagnosis.
A year later, in 2012 I met my husband Angus, at work. I wasn’t completely recovered from my op, but it wasn’t obvious the extent of treatment I had received. He was wonderful and we were both aware my brain tumour would come back, it was a matter of when and on 11 June 2016, we got married and began planning a future of starting a family.
Our discussions of becoming parents were shot down by the consultant who replied to our hopeful news that my brain tumour was now cancerous and had progressed to a grade 4 glioblastoma (GBM) and I needed a second operation immediately. I was shocked.
I’d built a rapport with my consultant and had we not had that relationship, this news would have ripped through me.
Questions flooded my mind with what would happen next. How quickly would I be in surgery? Would I have the same surgeon?
At the end of May 2017, I had a second operation, this time I was awake for part of the procedure, during which my mobility was impacted. A risk which comes with something as huge as brain surgery.
“I returned to the ward, unable to walk and I wasn’t allowed to leave until I could successfully walk up and down a flight of stairs without the support of my physiotherapist.”
Six weeks later I went home, using a stick to walk. I live with hemiparesis, a weakness in one side of my body. Even now I need to maintain regular Pilates style exercises to target the smaller muscles in my legs. I have a limp and there is a higher risk of falling, but I can move around independently.
I spent my first wedding anniversary in a wheelchair as we had dinner in a restaurant next to the hospital where I had my awake craniotomy.
In September 2023, after living seizure free for six years and starting my own business called The Keto Bakery – a food-based company inspired by my own brain tumour diagnosis, there was regrowth of my tumour. I felt frustrated.
I had three months of temozolomide chemotherapy which shrunk the mass and now I’m taking lomustine which I will have for the next six months. If it continues to work and shrink the cancer, then I will be on chemotherapy for the rest of my life.
“I’m certainly more fatigued than I have been before, but I am still living my life as best I can, why would you let anything beat you down, you only have one life.”
After learning to walk again and whilst on chemotherapy, I thought I wouldn’t achieve anything again which is why I joined the 200k in May Challenge. The Facebook fundraiser in aid of Brain Tumour Research has been testing so far, and it might take me longer than the month, but I am getting through the kilometres for sure.
A powerful organisation such as Brain Tumour Research might just manage to get more funding towards a cure for all types of brain tumours. There is an enormous amount of people diagnosed with this disease and we must have the funding into it so we can understand how to treat them and cure brain tumours.
Sam Vine
May 2024
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet 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 Sam’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