Claire's Story: Two Steps Forward

Claire's Story: Two Steps Forward

14 May 2010, a spinning room upon waking – my first vertigo attack and the onset of my first migraine, prompted a CT scan. I remember lying in the ER room listening to the doctors outside discussing the scans of a rare brain tumour; little did I know they were talking about me.

“You have a benign brain tumour – a colloid cyst” were the ER doctor’s words to me. These words changed the course of my life forever. I joined the group of ‘watch and wait’ patients around the world with yearly MRI scans to monitor my tumour. I was well looked after from a medical perspective with MRI’s, a neurosurgeon, neurologist and medications for migraine management but had to learn to become my body’s own advocate through conflicting medical opinions. 
I found the hardest part of my diagnosis was the acceptance of the uncertainty about the future, the ‘what if’s’, not something that can be relegated to a medical department and laid to rest! With time, I was able to find my own way in dealing with this, by ensuring I had a positive and supportive medical team, family and friends around me.
In August 2012, my tumour doubled in size. I suffered from vertigo and an unrelenting ten-day migraine. I had developed obstructive hydrocephalus – my brain was swelling. The only option for life to continue was brain surgery to remove the tumour.
Upon waking on August 31, 2012 after my surgery, I knew I had made it through and this was now the next step for me – recovery. I knew one day, I would pay it forward for having come this far, when I was able to. The recovery was not what I thought it would be; it was longer and harder. Perhaps this was as a result of the hydrocephalus or just my body’s own way of doing things. I think recovery is different for each and every person, just as our brains are so very different. My main challenges were chronic fatigue and short-term memory issues. Later, I also struggled with vestibular migraines and imbalance. However, regardless of these health challenges, I always knew that I was going to get there, make a recovery to the best of my abilities – one step at a time – forwards.
Time has taught me a great respect for both my brain and body and a gratitude for life, family and friends. I am grateful for the ‘new me’ I have discovered over the past three years since my surgery. A ‘me’ who is able to do almost all the things she used to be able to, but has a much deeper appreciation of “breathing in the small things”, a realization that the present is the best place to be and that health is not to be taken for granted. And for this reason, I embrace each day – two steps forward at a time!
Thank you Claire, for sharing your story, raising awareness, wearing grey, volunteering with BrainWAVE and all the other things that you do every day!

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