I was diagnosed with my tumour in 2011. I was feeling unwell at the time with what felt like a hangover and tiredness. I hadn’t been drinking, so why the heavy feeling? Why even heart palpitations? I ignored all this as life is always busy and carried on until such time when I thought I was actually having a stroke. A strange sensation ran through my head and throughout my body which I couldn’t control; my arms were stiff and wanted to pull towards inwards, my legs curled in to meet my chest and my speech was gone, I no longer knew how to get words out of my mouth. I could hear the words in my head but couldn’t release them; at best I could only muster a stammer.
A CT scan at A&E recorded no bleed on the brain and therefore it wasn’t a stroke. A diagnosis of migraine aura without headache was given by the neurologist. I had no headache and still kept losing my speech and would constantly feel the sensation of swiping over the upper left side of my brain. I decided on a private check-up and an MRI scan revealed a low grade glioma sitting under my motor strip (the cause for my sensory mainly left hand sided seizure).
When I was having my bizarre attacks I would go into a trance like state or simply not be able to move well; sometimes I wasn’t be able to place my left leg on the floor; it was as though two opposing magnets were fighting against each other and my leg desperately hovered above the ground. Fortunately these were scarce but a little disconcerting when they happened.
About a year after my diagnosis I had uncontrollable seizures with total loss of my arms and legs which fortunately didn’t last too long but they were frequent throughout the day I could have as many as 40 each day which saw me back in hospital and having to accept medication. I tried several types of medication before settling on Keppra and Zonisamide which have helped immensely. My MRI’s were increased to twice a year and they were confident that my tumour wasn’t growing.
So for years the tumour had been under control but my epilepsy not so much; that slowly got worse. In fact in 2016 I decided to leave my job as concentration became too much at times.
After a routine MRI (2 months after retiring) we received the news that my tumour had changed and I needed a biopsy. The result was a grade two diffuse astrocytoma. I had 6 weeks of radiotherapy and despite losing my hair I felt fine throughout. Then afterwards 6 months treatment of Temozolomide Chemo tablets; fortunately with very few side effects.
In 2018 I decided to set up a supporter group and raise some money for The Charity. This has now turned out to be an almost full time job for my poor husband. However I do the daring bits while he works from the laptop. In fact since then I have wing walked over the skies of Essex, abseiled the Mittel Orbit at the Olympic Park and in 2022 I sky dived in Cambridge. I’ve also given speeches about my experiences of living with a tumour to various groups. My husband and I also run fantastic golf days and quiz nights and we’ve got stuck in with the Big Bandana Bake plus we volunteer at events.
Well here I am in 2023 and all’s well. Unfortunately the tumour is still there and so I still have regular scans but I feel fine. However I’ve since realised the treatment had put me into the early menopause. Boo! (That’s another story)
So the good news is despite the occasional epileptic hiccup I’M STILL GOING STRONG!
Remember sometimes It is possible to carry on a normal life around all of this, just take time out to relax when you need to. When people say to me “listen to your body” it sounds corny, but it’s true. Take time out for yourself. Recharge the batteries and then go and enjoy your life!
Gina Rose