Dialog Box

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10
Mar
2017

Ben and Maddy's brain cancer story

By Maddy Clohessy

Just under five years ago myself and my fiance Ben went to bed on a Saturday night, with plans to go to Sunday brunch the following morning like we usually did. At the time I was 21 and Ben was 23. We were both at university studying, and so excited to travel the world, start careers and enter this next chapter of our adult lives together. 

 

We should have got up on that Sunday morning and gone to brunch, and carried on with our lives as we had planned. But we never made it to brunch that morning. Because instead I woke up to Ben having a seizure next to me. And our lives were never the same again.

Ben was a fit 23 year old.  He looked the picture of health. There was no warning that anything more sinister was going on. I retrace the six years prior in my mind daily, trying and find the signs I missed, or the chance I had to get Ben diagnosed earlier. But I just never find it. Ben was diagnosed with a grade 2 oligoastrocytoma. It’s not a term I use a lot, because in general conversation, most people don’t know what that means. All you need to know is that it’s a type of glioma tumour (the most common form of brain cancer) and that it is almost always fatal.

What you also need to know is that it kills more children in Australia than any other disease and more people under 40 than any other cancer.

Ben had surgery in Perth to remove 40 per cent of his tumour, which was roughly the size of a plum. That diagnosis left Ben with a life expectancy of 5 to 7 years and he was told there was not a lot more that could be done. For a few months, we both battled to readjust and cope with what had happened to Ben. Our plans, hopes and dreams lay crumbled on the floor. Around that time, we decided to go to Sydney to see Charlie Teo because we couldn’t accept that there was nothing that could be done. That one step, was hand-on-heart the best step we ever took during Ben’s illness and it changed everything.

 

Charlie treated Ben like a person, not a diagnosis. He was realistic, but like Ben, a fighter, and he allowed Ben to fight his way. Charlie successfully removed 95% of Ben’s tumour. It was a really tough call for Ben to have that surgery, because there was a high risk he would be paralysed and suffer other cognitive impairments, when at the time he was one of the rare lucky sufferers with no impairment at all.

To watch Ben walk into that operating theatre, by choice, remain the bravest act I have witnessed. He loved every minute of his life, and fought so desperately for each day he could squeeze.

But Ben got lucky, and was running two weeks later. Charlie operated on Ben another two times after that for his third and fourth surgeries, each buying Ben a little more time. At the same time, Ben endured nearly two years of chemotherapy, with no breaks, and it destroyed his healthy 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 for brain cancer.

I say this a lot, but I really do not like when the phrase is used that a person "lost" their battle with cancer. I think it’s because the choice of words to me has always implied that perhaps there was a battle to have been won. I can tell you now, there is no phrase more ill-suited to describe Ben’s battle. Ben won his battle against brain cancer, each and every day of his life.

Sick was not a label Ben wore well. He never looked sick, and he defied the odds at every turn.  Every time we thought things couldn’t get worse, and it must finally be time for things to turn around for him, they got worse. But Ben’s attitude, bravery and drive, meant that with every relapse, and every new course of treatment, and it’s matching set of horrifying side effects, Ben thrived, and enjoyed life, despite all of the odds being stacked against him.

Ben brought sunshine everywhere he went, and especially to me. We did crosswords in chemo wards, we had wheelchair races through hospital wards, we laughed through all of it. People regularly stop me to tell me how inspired they are by the way he chose to live his life.

But Ben’s battle was one that was never able to be won. And that is the problem.

When Ben was diagnosed with terminal cancer, we hit a cross roads of how we could have moved forward from that point.  If brain cancer could ever have had a silver lining, Ben and I found it. We traveled. We stayed up all night talking, and we lived every day like it was the best day, because tomorrow was never a guarantee. We set small goals, and Ben smashed nearly of them.

We learned that worrying about the small things is a waste of your precious time. Because the real troubles in your life will never be the things that pull at your worried mind all day, they won’t be the things that keep you awake at night or make you bite your nails. They will be the things that stop you in your tracks on a Sunday morning during brunch, that you never saw coming.

For me, I held in my heart a goal that Ben would live to see our ten year anniversary. He did, and he asked me to marry him. It was the happiest day of my life. Ben and I grew up together, and he was my best friend in the world. Nearly half my life I have spent with Ben by my side.  And for that, I consider myself to be the luckiest person in the world.  There aren’t words to describe the amazing person that Ben was. You had to see it for yourself.  Unwaveringly loyal, selfless, kind, and a gentleman. But the thing I loved most about Ben was his mind. And I had to sit by and watch helplessly as each part of it was slowly and horrendously taken away.

Over the years Ben and I made many promises, the most important being that the stress of cancer would never break us. It never did. I also made a promise to Ben that I would never ever give up on my relentless pursuit of saving his life.

To say the last five years have shattered me, is an understatement. And if I am really honest, when Ben died, I felt like giving up. But Charlie Teo once told me that the problem with a disease like brain cancer, is that it is so brutal that it leaves so few survivors, and therefore those who would otherwise champion the cause are often not able to. These champions are the reason that other cancers have had such amazing successes in improvement to treatments and survival statistics.  Sadly, these statistics haven’t improved in 30 years for brain cancer sufferers.

So I feel a responsibility to stop my nightmare from becoming someone else’s reality. I owe it to the people like Ben, who worked tirelessly to change the reality of this disease, not to give up on a day where this story could have been a different one.

 

Each and every day Ben gives me the strength to remember how important this cause is, and reminds me why I keep going. I know one day in the future I will meet someone just like Ben, and as my heart begins to break for them. I will stop and realise that there are effective treatments for brain cancer, and their story will be different, because of events like the Paper Crane Gala Ball.

I live with hope in my heart, that that day comes soon.

The Paper Crane Gala Ball