I am proud to be living proof that statistics can get it wrong!
I was initially advised of an abnormality in my brain after experiencing an 'episode' whilst at my yard. It was approximately 5pm and dark, I had been for a ride on my horse with a friend and when I got back I was acting very strange. My friends called my parents and my mum came to pick me up, when she saw me she was very concerned. I was taken home and remembered that I had a very slight headache. When I got home my parents called NHS 111 and they suggested I come to A & E.
At the hospital I had to have a number of cognitive tests, similar to a drunk driving test (i.e. close my eyes and put a finger on my nose, walk in a straight line, one foot in front of the other). By the time I went to the hospital I was almost back to feeling normal. I said I was fine and it was suggested that I go home and get some sleep.
The following morning I called in sick to work as I realized I was not fine, and booked a GP appointment. My GP sent me back to the hospital. I was assessed at the hospital and told perhaps I had suffered a 'focal migraine' and would book me in for an MRI and appointment with a neurologist. The following week I had my MRI and was told I had an abnormality in my brain - and that I would have a brain operation within 2 weeks.
I asked to see the scan and can only describe that it looked like a golf ball sized piece of cauliflower in my Right Frontal Lobe. My first brain operation was at Derriford Hospital in Plymouth. One week later I was told that I had a Brain Tumor, Glioblastoma Multiforme (GBM) Grade 4. I was told that statistically I had 1-3 years of survival.
Radiotherapy/Temozolomide Chemotherapy followed, and I was on Steroids/anti-seizure medication required for someone with a brain tumor. Months later I had further surgery to reduce fluid buildup that was causing headaches. I had more surgery to remove regrowth after that. The following year I was offered and accepted Stereotactic Radiotherapy. Since then I have had yearly MRI scans that have shown “no notifiable change.” I have since been told that due to my tumor being “methylated” the Temozolomide chemo is more likely to have a favorable response.
After being diagnosed in 2010 at the age of 22 and thinking that statistically I would not have my 30th birthday was very strange. I thought that I would never get married, have children, or own a house. In 2012 I got married (I am now divorced) but bought a house with my husband in 2013.
I am now 35 and 12+ years after diagnosis and proud to be living proof that statistics can get it wrong!
My dream was for a center where all cancer patients and their family members can get better prepared to deal with the enormous challenges of this disease, regardless of their ability to pay.
Cancer showed me that my time is precious, that my relationships are precious, that my life is precious, and that I need to protect my energy at all costs. I’ve found a new purpose and am now focused on the things that matter most.