What It’s Like To Lose A Friend In Their 20s To Brain Cancer

Contributor: Pedestrian

THE DIAGNOSIS

By Scott Gaynor, Ben’s friend

The thing that stood out the most for me about Ben was his infectious happiness. He could light up the room with a smile and he had the best sense of humour. He was honest, loyal and loving, most notably toward his fiancé Maddy. He also had an annoying knack of being brilliant at whatever he attempted. Whether it was academics, athletics, soccer, cricket, football or guitar – he could do it all. This trait only strengthened when Ben was faced with his biggest challenge.

After a night with friends, Ben went to bed with Maddy, only for her to awaken to Ben having a seizure. Ben was taken to hospital and once his seizures were under control, underwent a CT scan of his head. This revealed a mass in his right frontal lobe that extended in to his corpus callosum. Ben had to be transferred to a different hospital to have an MRI and review with a neurosurgeon.

After a debulking procedure in which tissue was sent to pathology, Ben and Maddy were told that it was a low-grade cancerous tumour that would at some point develop in to a high-grade aggressive tumour. It was not a promising prognosis. Just like that, with no warning signs, a young, fit 23 year old was diagnosed with brain cancer.

Like I said, Ben had a knack for being brilliant at whatever he attempted. He wasn’t going to give up without an extraordinary fight.

THE EARLY STAGES OF TREATMENT

By Stefan Testi, Ben’s friend

On a Sunday morning, Ben was presented with a very sudden, and very serious diagnosis following an unprecedented seizure. The great shock of this horrible news to both Ben and Maddy was compounded with the overwhelming task of needing to decide immediately and urgently the first treatment course.

At the advice of the Perth neurosurgery team, Ben was strongly directed towards brain surgery. He bravely made the decision to have it, just 4 days following the diagnosis of his brain tumour. The surgery was daunting for Ben, for Maddy, their families, and all of their friends. It was an extremely tense and emotional period for all of us waiting either there at the hospital, or waiting on the news. We were all scared.

Following the surgery, Ben and Maddy were aware that more needed to be done, so together they decided to explore further options on how to cure this horrible disease. They explored every avenue of research, including significant diet modifications to try and buy time and quality of life.

As a result of few options available in Perth; the next course was to seek the expert advice of Dr Charlie Teo in Sydney, where a further three brain surgeries were endured with significant challenges and successes. The treatment also involved a painful and horrible mix of regular chemotherapy and ongoing bouts of radiotherapy.

THE FIGHT

By Olivia Walton, Ben’s friend

Ben didn’t lose his battle to cancer, he fought strongly every single day, taking up every possible treatment option. His positive attitude and willingness to have a joke took him and those around him through the very darkest of times.

Ben had some pretty drastic lows when it came to his treatment. He had four brain surgeries, each more risky and terrifying than the last. He had 35 rounds of radiation therapy and 17 rounds of chemotherapy. He even undertook a risky trial, spending his life savings in the process.

He would wake up screaming that his legs were on fire and there was nothing that anyone could do to make it stop. His whole body changed drastically whilst on huge doses of steroids. At one point he lost the ability to walk and his cognitive function (especially his memory) was significantly impacted.

There were also some amazing highs. Ben bounced back from his brain surgeries in a remarkably short time frame. He took control of what he could, making sure that he was eating the correct things and exercising when he could. He had a period during his illness when he was well enough to travel and took off on a world tour with his then girlfriend Maddy. He lived in and explored another city (Sydney) for 6 months, bought a house and proposed to Maddy. And he was a joker – the whole time.

While, as a friend, you knew that he was dealing with some truly awful mental and physical battles, he never ever let you see it. He was a hero every single day and he will remain hero, to those closest to him, forever.

THE REALISATION IT’S A BATTLE THAT CAN’T BE WON

By Chris King, Ben’s friend

Since I can remember Ben was called Crackers.  ‘Ben’ is too serious and that just wasn’t him.  He had a fun, quirky, animated personality and the name Crackers suited him well. 

For a long time I thought Crackers was going to beat the odds, whatever the odds were, smash cancer, write a book, give motivational speeches and live a full life.  Crackers had a great attitude and powerful team around him.  His fiancé Maddy was tremendous support and he had the best neurosurgeon in Australia in Dr Charlie Teo. 

However, that wasn’t to be. 

With this realisation came a lot of anger, sadness and confusion.  The five stages of grief weren’t so much stages but a cycle. I had realised what was happening but couldn’t accept it.  The unbelievable unfairness of the situation left me very confused, angry and sad.

I have a great support group in my family and friends and since his passing and I have been able to do things Crackers would have been proud of. At times I feel sad that I haven’t been able to share these things with him.  But thinking of him and his positive attitude through tough times reminds me to smile and push forward. 

THE END

By Maddy Clohessy, Ben’s fiancé

Ben was my best friend in the world.  And if love was enough, he would still be here. Ben died fighting in my arms a year ago, and the world lost a truly decent gentleman.

And the problem is, his story isn’t rare. It’s not unusual. It’s the norm. Young, healthy people in their prime.  I’ve always thought it was the wrong choice of words when someone says that a person lost their battle with cancer. It implies there was a battle to have been won. With brain cancer, it’s the equivalent of an army of thousands against a sole individual, with no weapons to defend themselves. Ben’s battle was simply never one that could’ve been won.

Each day without Ben breaks my heart.  But I am lucky enough to have spent nearly half my life with Ben by my side. For that, I consider myself to be one of the luckiest people alive. One of the most important lessons Ben taught me was that you will never be able to change the hand you’ve been dealt in life. But you can change how you deal with it and what you do about it.

If he was here, Ben would tell you that some of the greatest times in his life were during his illness. He just loved being alive. He used every day, and he fought for every extra day he could have, a privilege we are all guilty of forgetting about as we complain about it being Monday again.

THE LEGACY

By Andy Chapman, Ben’s friend

The strongest memory I have of Ben during his treatment was how committed he was how hard he worked to be fit and healthy. He had obviously said to himself, “Well, this illness has been forced upon me, so I’m gonna do what I can to control all the other aspects of my health.”

No doubt that this behaviour was encouraged by his doctors, but it was still very impressive to see. I think what we took away from that was to not take our health for granted. The unfortunate truth is that Ben was young and fit and yet he went from a bright young man to extremely ill to the point of being unable to walk in a shockingly short amount of time.

So unfortunately none of us can get away with being lazy any more because we know Ben is always looking at us saying, “Hey, if I can be fit in the middle of chemo then you can at least take the dogs around the block.”

The fact that Ben died so young was also really a rude awakening to the fact that none of us knows exactly how much time we are going to get. At first this seems disheartening but in a strange way it has almost been liberating.

Liberating because it means we are more decisive on issues we might have otherwise wrung our hands on, like taking that big vacation we’ve always wanted to take or moving to that city we’ve always wanted to live in. Even in smaller ways Ben’s experience has been woven into our daily lives, like appreciating the time we spend with friends and family just that little bit more or putting bad days in perspective.

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If you’re affected or distressed by this difficult subject matter, call BeyondBlue on 1300 22 4636 or call Lifeline on 13 11 14 for emergency support.

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