Over the last few months, I’ve been working on a book for low grade brain tumour patients.
In those early weeks after my own diagnosis, I found myself scrabbling around, looking for something – anything – that would tell us what had happened to me and my family. About what might happen next.
There was technical information around but, for the most part, we had to learn for ourselves about how to live with a low grade brain tumour.
With thousands diagnosed every year in the UK with the same and similar slow growing tumours, I realised there were truths that weren’t yet being told. Stories that needed to be shared.
The book features the lives of 20 other low grade brain tumour patients, many of whom will also never be cured. My aim has been to inform and reassure, perhaps to support other patients. I hope I’ve written for them what I so desperately needed in those fearful early months.
In the writing, a few things have surprised me.
First, was how different some of our experiences had been. For some, our diagnosis came after a slow growing of symptoms, a trip to the doctors, an MRI scan that changed things forever.
For others, it happened all at once. A lightening strike: an unexpected seizure or blackout that landed them in hospital, needing emergency surgery before they could even take everything on board.
For others, their tumours were found by accident, perhaps after a scan for an unrelated condition. For yet more, patients had to hound and nag and pressure their doctors, desperate for their symptoms to be taken seriously.
I was also surprised by how widely our lives had diverged post-diagnosis.
The student who was looking forward to a bright independent future but now lives with her parents, dependent on them to drive her around. The soldier and physical training instructor who had to learn to walk again.
The mum who left hospital after brain surgery with the determination to pick her daughter up from school. The man who’s partner couldn’t cope with the stress, the relationship becoming irrecoverable.
The parent who sat on the ward with her son being treated with a dangerous but perhaps curable tumour; and the guilt she felt as she watched other parents clinging desperately to the lives of their dying children – those who had not been as ‘lucky’ as her.
The guy who’s life has not changed at all. His tumour feeling “like one of those old rusty bombs sitting at the bottom of the Thames doing nothing, never likely to explode”.
Apart from our sometimes radical differences, a few uniting threads also emerged from their stories.
From the day of diagnosis, none of our lives would ever be the same again. Each of us fear what the future holds. We live every year, month, week and day wondering if something is about to change, probably for the worse.
But I was surprised too about how adaptable and accepting we had all become. What had begun as shocking had somehow become every day life. This would now be how our lives would be.
One perhaps of seizures and drugs, memory loss and disability. Speech problems, driving bans, nausea, worry. Unable to escape, we’ve absorbed the un-absorbable. Made the extraordinary, ordinary.
The lives freely shared with me openly have astounded and impressed me. I may have written the words, but the book really belongs to each of those 20 people who trusted me enough to play magpie as I’ve sifted through their lives looking for the most revealing parts.
For that reason at least, whether you are personally affected by brain tumours or not, I hope you’ll read their stories.