In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Laura was just 21 when she was diagnosed with a low-grade brain tumour. The swimming instructor and keen horse rider had suffered from debilitating symptoms for more than two years, including migraines, sickness, and psychosis, which were misdiagnosed as a mental illness. A year on from her diagnosis, she is still adjusting to life as a brain tumour patient. She’s at a crossroads as she decides whether to have further treatment. Her plans of moving into her own home and thinking about a family have been thrown into the air.
Laura tells her story…
Up until my brain tumour diagnosis, I thought I was invincible. At the age of 21, I never worried about my health and my own mortality was never something that crossed my mind.
“When the doctors first discovered something abnormal in my MRI scan, I joked whether they’d found a brain. I could never have imagined I had a brain tumour.”
My diagnosis changed my outlook on life. I’m not sure whether or not I want kids, for fear of them inheriting the disease or seeing me suffer with symptoms. My plans of moving in with my boyfriend Harry were put on hold. I had to give up my driving licence and, living in the middle of the Somerset countryside, with that I lost my independence.
It took over two years to get a brain tumour diagnosis so I’m keen to share my story to help raise awareness. It was frustrating to be told by doctors that my symptoms were caused by mental illness – I was diagnosed with anxiety, depression and even bi-polar. I sensed that my symptoms weren’t being caused by mental illness; I’m quite an emotional person and flip between happy and sad moods, but this is just part of my quirky personality.
When I experienced my first migraine, it was horrible. I remember waking up in the middle of the night not being able to see properly. It was the worst head pain, so bad I was in floods of tears. The migraines continued and I had them up to three times a week. They were crippling, made me sick and all I could do was cry.
The doctors were unsure of what was triggering my migraines and eventually put them down to anxiety and depression. I was prescribed anti-depressants which didn’t do anything to help and after a few months I was told I might have bi-polar disorder.
By October 2018, I’d learned to live with my headaches but my physical symptoms soon became more debilitating. I was in a 1:1 meeting with my manager at Wincanton Sports Centre when, without warning, I projectile vomited. It was terribly embarrassing and I’d also started to suffer from incontinence episodes which made me feel down and as if my independence was being taken away.
A month later, I collapsed while shopping with my mum. I was also struggling with my mobility, so could no longer enjoy running and riding my horse, and became really clumsy. When I started having episodes of psychosis, things got really scary and my dad wondered if I had multiple sclerosis (MS). I’ll never forget seeing red eyes staring at me in my bedroom but Mum and Dad couldn’t see anything at all.
Things came to a head when I collapsed and fell downstairs in December 2018. My dad found me and took me to Yeovil District Hospital, where I had an MRI scan. Mum and I received the results in a private room; I thought it might be serious.
“There was a tennis ball-sized growth on my brain; the doctors were unsure of exactly what it was. I struggled to take the news in but Mum was asking lots of questions and I remember the word cancer being mentioned.”
I was blue-lighted to Southmead Hospital in Bristol the next morning, where I was admitted to an intensive care unit (ICU). I was told that if my tumour had been left undetected, I wouldn’t have survived until Christmas. I needed emergency surgery
to prevent me having a stroke or a seizure which I might not recover from.
Mum and Harry were with me as I was wheeled into the operating room. The 13-hour procedure removed 80% of my tumour but parts of it were inoperable. I don’t remember anything from surgery but a biopsy confirmed that my tumour was a low-grade central neurocytoma and we breathed a sigh of relief that it wasn’t cancerous.
“Recovery was tough and I lost two stone. I had to re-learn how to talk and was in constant agony because my muscles had wasted away.”
I was pleased to be discharged in time for Christmas and was back at work in the New Year. I’d just about found my feet when, in May 2019, I had a seizure and was off sick for a couple of days. I had another seizure this September, while teaching a swimming lesson, and I had to be pulled out of the pool by lifeguards. I took a few weeks off to recover, which was really hard as I just wanted things to be back to normal.
“I’m currently waiting for the results of my latest scan and I’m trying not to worry about it too much. I don’t want my brain tumour to define me or take over my life, but sometimes I find it hard to put on a brave face.”
Going forward, I’ve been offered further surgery and radiotherapy. I’m averse to having more treatment as I don’t want to take more time off work to recover. I adore my job as a swimming instructor and it is the reason I get up in the morning. Because of the location of my tumour, radiotherapy could leave me infertile or even blind and this is a really worrying thing to think about, especially as a 22-year-old.
A brain tumour diagnosis doesn’t just affect the individual but everyone around them too. I hate that Harry feels so helpless and I know it also deeply affects my two younger sisters and parents, but I’m grateful to have their support as well as that from my wonderful employer.
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 Laura’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.