You’ll always be my reason

Every year Ben and I run the 12km Run for a Reason in Perth for this cause. It’s something we always looked forward to and it gave us hope and drive.

This year, I’ll be doing it for the first time on my own. Without my fiancé, without my best friend, without half of my pair, without my reason.

Ben was diagnosed with brain cancer on a sunny ‪Sunday morning in 2012. He was 23, and in the prime of his life. He was fit and healthy, intelligent, kind and brave. He was, and still is my hero. But brain cancer is indiscriminate. It strikes a person down in the prime of their life, usually with no warning signs and no risk factors.

Ben won his battle against brain cancer every day of his life. You won’t find a photo of Ben looking sick, because he never really did. You won’t remember a time that he complained about the terrible injustice of his life or the pain and suffering he endured on a daily basis, because he never saw it that way. He thrived with cancer when it should have stopped him in his tracks. He loved every minute of his life, and he fought so desperately for each day he could squeeze. Despite everything he went through, we lived an incredibly happy life together, and treasured every day. We had each other, and that was all we would ever need.

In the ten and a half years I was lucky enough to have with Ben by my side I learned what it means to be truly brave and tough. In four years, Ben had four brain surgeries with his hero Charlie Teo, each surgery more risky than the last. To walk into that operating theatre, knowing the incredible risks, knowing the pain of recovery, and knowing he might not wake up himself, remains the bravest thing I’ll ever witness.

Ben endured nearly 2 years of chemotherapy, with no breaks, and it destroyed his body piece by piece. Ben had 35 rounds of radiation, which to your brain, is horrendous.

There are no effective treatments for brain cancer but Ben tried them all anyway, despite the terrible side effects and spending our life savings on clinical trials and other drugs not covered by the PBS system for brain cancer.

Despite a fight that you truly had to witness to believe, and Ben’s continual defiance of his scans and life expectancy, leaving doctors in disbelief, Ben died in my arms in December, at only 27 years old, in agonizing pain, fighting for every breath, just desperate for another minute of life. He never gave up, and I promised that I wouldn’t either.

This is unacceptable, and I’ll spend my whole life trying to prevent my story being someone else’s story.

The cold hard reality is that brain cancer takes everything from you, piece by piece. It’s insidious and targets the very essence of a person.

These are the harsh statistics:

  • Brain cancer kills more children in Australia than any other disease and more people under 40 than any other cancer.
  • Brain cancer research receives very little funding compared to other cancers and there is also minimal spend on care co-ordination or other infrastructural support for patients.
  • Brain cancer receives less than 5% of federal government cancer research funding.
  • Brain cancer costs more per patient than any other cancer because it is highly debilitating, affects people in their prime and often means family members cannot work if they become carers.

Ben fought every single day to save his own life. And a big part of that was raising money to help fund research.

Over the last four years, Ben has raised nearly $75,000 for the Cure Brain Cancer Foundation. He’d like to see that pass $100k.

Every year I see more and more Cure Brain Cancer fundraisers for Run for a Reason, and after being either the first or second highest team fundraiser for the last few years, I’d like to do that again, and give HBF a reason to make Cure Brain Cancer one of its featured Run for a Reason charities.

I love you Ben. You’ll always be my reason.

Maddy Clohessy

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