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!