Kirsty Connell, a specialist teaching assistant and mum-of-three from Old Stratford, Northamptonshire, was diagnosed with a grade 2 oligodendroglioma in October 2021 after suffering with headaches and repeated feelings of déjà vu. The 39-year-old, whose grandmother died from a brain tumour more than two decades ago, underwent an awake craniotomy and is now being monitored with three-monthly scans.
Kirsty tells her story …
I went to my doctor because I was getting a new pattern of headaches – I was waking up in the mornings with a dull pressure in my forehead – and I was having frequent feelings of déjà vu and out-of-body experiences as if I could feel myself in other places. I’d be having a conversation with someone or be in a shop paying for something and get a funny feeling. Then I’d see myself in other places such as driving a car, at home cooking, or walking somewhere else. My doctor referred me to a neurologist at Milton Keynes University Hospital who thought I was having hormone-related migraines but sent me for an MRI scan as a precaution. By this point my headaches were becoming increasingly frequent and more intense, so he prescribed me medication for them.
That MRI scan took place in a mobile unit at the hospital on a Saturday afternoon in October 2021. My husband, Liam, was waiting for me in the car but, having completed it, the sonographer told me I couldn’t leave. I was sent to A&E where I sat on my own waiting to see a doctor for three hours without knowing what was wrong. When I got taken through to a family room, I knew something wasn’t right and that’s where I was told they’d found a mass on my brain.
“My nan had a brain tumour and passed away when I was 12, so I asked if what I had was the same thing.”
My scans were sent to the John Radcliffe Hospital in Oxford at around 6pm. Eight hours later, I was told there’d been a mix up between my maiden and married names and after all the confusion, because I might have to start treatment or need emergency surgery, they were going to keep me in until they had confirmation from John Radcliffe.
“I stayed there for four days during which time I had a full CT scan to confirm my mass was a primary rather than secondary tumour.”
The following week I saw a consultant at John Radcliffe who told me he believed my tumour was a grade 2 oligodendroglioma. He said to prepare for the worst but the best-case scenario was I’d have an awake craniotomy. My first thought was there was no way I could be awake for surgery. I’d had a mole removed previously and that completely put me off, but I was really looked after. I had private healthcare through Liam’s employer and so went ahead with the op at The Wellington Hospital, in London, in November. It wasn’t as bad as I’d imagined; the team was great and I recovered well, going home three days later.
Six days post-surgery I was sat in a chair wrapped up in a blanket watching my son, Jack’s football game. I remember being completely out of it as I was still on steroids. I’ve since been weaned off them but I continue to take the anti-seizure drug Keppra. I feel really lucky because the surgeons were able to remove every visible trace of my tumour and I know it could have been very different.
“I know a lot of people are worse off than me and that serves as a constant reminder of how short life is and how important it is to make the most of it.”
I’m now on a ‘watch and wait’ protocol and having three-monthly scans at Genesis Care, Oxford, after a slight change was detected in November 2022 and again in January this year. There’s talk of the possibility of me needing to have further surgery followed by radiotherapy and chemotherapy to kill off any remaining cells but I’m hoping things stabilise again so I can take vorasidenib instead. This targeted drug can delay the progression of some tumours like mine whilst largely sparing healthy cells, therefore postponing the need for additional therapies like radiation or chemo which can be more harmful.
“Sadly though, it has yet to be licenced in the UK.”
In the meantime, I want to do all I can to support Brain Tumour Research in its efforts to increase the national investment in research into brain tumours and raise awareness. With this in mind, the special needs school I work at, The Redway School in Netherfield, Buckinghamshire, will be taking part in Wear A Hat Day. I’m going to be wearing a pink cowgirl hat and I’m hoping to see lots of the students and my colleagues taking part too.
Kirsty Connell
March 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 Kirsty’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
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