Theo Burrell, 37, from East Lothian in Scotland, started suffering from such strong migraines in December 2021 that she was unable to bend over or lie down. The Antiques Roadshow specialist was in so much pain she went to hospital where a scan revealed she had a glioblastoma (GBM). She was told she would only have three months to live if she didn’t have surgery. Theo, mum to two-year-old Jonah, had an operation followed by chemotherapy and radiotherapy. Her most recent scan on 19 July was stable.
Theo tells her story…
During Christmas 2021, I started getting ill. I got carsick during a journey, which was strange because I never got carsick. I was also having migraines which made me really sick, and I was having problems with my vision. My son, Jonah, was one at the time and had recently started nursery so I thought I may have picked up a stomach bug.
“The migraines got worse; they became so severe that I couldn’t bend over or lie down, and I wasn’t eating. I have always had health anxiety, so I thought it was best not to Google it.”
I saw multiple doctors about the problems I was having but none of them knew what was wrong. I couldn’t live with the pain any longer, so I went to A&E at Edinburgh Royal Infirmary on 7 June 2022.
“I had a CT scan and was told I had a brain tumour. The surgeon said it was a glioblastoma (GBM) and that, if I didn’t have surgery, I would only have three months to live.”
I was really shocked, and I didn’t know what to expect going forward. I was told they could operate so I thought things would be OK.
I was put on steroids to reduce the swelling on my brain, and this led to me regaining my appetite. I was also given morphine which meant I wasn’t in pain for the first time in months. Physically, I was feeling better but mentally, I was all over the place.
On 13 June I underwent surgery, using 5-ALA, also known as the Pink Drink; it’s taken as a drink prior to surgery and causes tumour cells to glow bright pink under UV light. The procedure went well, and the surgeon said he managed to remove over 90% of the tumour. I spent 24 hours in the High Dependency Unit and then, after a few days, I went home.
I was scared about going home and was anxious about things going wrong, such as the risk of cerebral fluid leaking which could lead to me getting meningitis.
“I felt very emotional doing bath-time and bed-time stories with Jonah, thinking it may be the last time but fortunately I’ve had lots with him since.”
It’s been really tough for my partner Alex because he’s had to be both mum and dad to Jonah throughout this. My mum, who used to be a nurse, helped to look after me at home; over time, and after getting out to walk the dog a lot, I started to feel better.
“I started radiotherapy and chemotherapy on 25 July. It was OK but it was quite a lonely experience; in the waiting area, I was the lone young face among lots of older people. When my name was called and I stood up, people would look, expecting one of my parents to be the patient instead of me.”
My dad drove me to the hospital every single day and he did everything he could to make me feel better, including stopping off for coffee every day. Afterwards, the two of us would go and do something nice together which was really lovely.
When my treatment finished on 2 September, I had a four-week break before undergoing six months of chemotherapy, in the form of Temozolomide, which finished in April 2023. I have check-up scans every three months, so now I’m just waiting and watching. My most recent scan on 19 July was stable. I hate the wait for the results; I really feel the pressure of it all and I become more stressed and irritable.
“I know what’s coming but, for now, I’m just getting on with things. I went back to work at Lyon & Turnbull Auctioneers last week, it’s been nice to do something normal from my previous life again.”
I used to always live in the future, I was always working on the next auction which was months down the line but now I try to live day to day and enjoy the present. I never used to plan ahead of my next scan, but I’m trying to change that.
I’m now supporting Brain Tumour Research. The charity is calling on the Government to increase funding to study the disease. 100,000 signatures are needed on its www.braintumourresearch.org/campaigning/brain-tumour-research-petition, in the hope of prompting a parliamentary debate.
I’ve signed the petition and encourage others to do the same. It’s hard not to feel angry about the whole experience. Brain tumours are so underfunded, and they have such a poor prognosis.
“Brain cancer is a few steps ahead of us, it’s outsmarting us.”
We can get a man on the moon, but we can’t cure brain tumours, it’s so frustrating and funding is so thin on the ground. So many young people get brain tumours, so we need to care for the next generation.
Signing the petition is a no brainer but, joking aside, it’s so important to get the 100,000 signatures, otherwise it suggests people don’t care.
Theo Burrell
August 2023
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 historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been inspired by Theo's story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.