Story
In October 2024, I had surgery to remove my temporal lobe Brain Tumour. Brain Tumours are the biggest Cancer killer of children and adults under the age of 40.
I will be doing a series of Wellbeing activities to raise money for the Brain Tumour Charity who have helped me on my journey in many ways. They offered advice on questions I could ask my specialists, introduced me to a support group, helped me with bereavement materials for my little boy in case the worst should happen.
My journey began in 2020 when I had my first seizure out of nowhere during lockdown. I got diagnosed 4 months later and was told over the phone due to the lockdown rules. It wasn't for another month until I found out it wasn't cancerous. During that month, I planned my Will, drew up powers of attorney, danced with my friends. I looked at my son and husband as if it was the last time I'd see them every night. But I was so grateful for the life I'd lived so far.
Over the last 4 years, I trialled 4 different seizure medications to get my seizures under control, but had no luck. But I'm happy to say the surgery went well. All thanks to the amazing staff at St George's Hospital.
It's not quite the end of our journey yet, but I know with the support of my wonderful family and friends, I'll be ok and come back even stronger!
I also wanted to raise a bit of awareness around Brain Tumour facts I'd wish I'd known. I had no idea what a focal awareness seizure was, this is what mine looked like:
• Deja vu feeling
• Seeing picture of person in your mind
• Seeing everything & hearing everything but can't move or talk for about 3 minutes
• Tummy rolling like you’re on a roller-coaster just before you are unable to move
Please if you have any of these symptoms, go to your GP.
You can also find out more about how to help someone if you see someone having a focal aware siezure: https://www.epilepsy.com/recognition/adapting-plans/first-aid-focal-impaired
If anyone out there wants to talk about having a brain tumour, having brain surgery, or anything post op. Please just reach out.
Over 12,000 people are diagnosed a year with a primary Brain Tumour and just 12% of adults survive for 5 years after diagnosis. Over £700m is spent on Cancer Research in the UK every year, yet less than 3% is spent on Brain Tumours. By doing this bit of fundraising, I'm hoping to make a small difference and turn this diagnosis into something positive.