We were just an ordinary young couple from Newcastle with our whole lives ahead of us when everything changed. James and I met and fell in love when he was 19 and I was 18. We got married in October 2010 and had an idyllic tropical island wedding in Fiji. It was just after our second wedding anniversary that James starting feeling off – he was getting a few headaches, his vision started to get a bit blurry and he started having trouble reading and comprehending words on a page. There was also an incident where he was having a conversation with someone and all of a sudden he couldn't understand what they were saying. He was completing his final year of his law degree at the time and we put it down to eye strain from too much reading, stress or migraines. James knew something was wrong. He went to the GP who ordered a CT scan as a precaution.
I was at work when I got a call from James to come straight to the GP's office. He wouldn't tell me what was wrong until I got there and when I walked in he told me that he had a brain tumour about the size of a golf ball on the left hand side of his brain. We were both in complete shock as the doctor explained that it was most likely a malignant tumour and he needed surgery immediately to remove it and get a biopsy and steroids to reduce the swelling in his brain which had been causing his symptoms. I'll never forget what the doctor said to us, “this is a life changing day for both of you.” And he was right, from the moment of that diagnosis, our normal life as we knew it was effectively over and we started on a terrifying journey from which we could not escape. We couldn't believe that it was actually happening, it was like a nightmare.
James was admitted to hospital that day and had craniotomy to remove the tumour three days later. The surgery was a success but the news could not have been worse. We had both done our research and were hoping for a grade 2 or a grade 3 tumour that was easier to treat and had a better life expectancy. The pathology showed that it was a grade 4 tumour called glioblastoma multiforme (GBM) – the most common and most malignant form of brain cancer that has a dismal prognosis. The surgeon told us that, based on James' age (he was 29) and good health, he had a 70% chance of being alive in three years. We later found out that the median life expectancy of people with GBM was only 12-15 months with standard treatment. There were a few lucky ones who lived for 3, 5 or even 10 years but most succumbed to the disease within months as it was so aggressive. It was devastating news but James remained ever positive. He was going to beat this, we would find a way.
He didn't let brain cancer stop him from achieving his goals. Just two weeks after surgery, James completed writing his law honours dissertation and went on to graduate with honours first class. It was one of his proudest moments and I could not have been prouder of him. He had been offered a job at a top Sydney law firm but deferred to concentrate on his treatment. He had found his true passion in law, he couldn't stand injustice and wanted to use his skills to help people who couldn't help themselves.
"It seemed so cruel that such an articulate, beautiful person with a brilliant brain like James would get brain cancer in the prime of his life."
It was not genetic, no one knows what causes it (it seems to be affecting more young males, as well as children and older people) – it was just so unfair. But as he said to me, “there must be a reason to all of this – it can't all be for nothing.”
James began a six week course of radiotherapy and joined a chemotherapy clinical trial which involved taking both oral chemo and going into hospital for an IV infusion twice a week. Our lives became all about endless hospital visits, doctors, drugs and researching treatments. James began a strict ketogenic diet and began exercising every day. When his first post-radiotherapy MRI came back all clear, the relief we felt was incredible. James had lost some hair from the radiotherapy, lost some weight and felt fatigued and a bit sick at times but all things considered he was feeling pretty good. We continued to stay positive and lead as normal lives as we could. James even volunteered at a local community legal centre doing pro-bono work. He had a seizure in March which was terrifying and landed him in hospital for a few days but the scans showed no regrowth at that stage. We were both determined to continue our plan to start our family and were overjoyed when I fell pregnant with our little girl, due in February 2014 – she was our light in the darkness and something positive to focus on.
In July James was still doing well and we celebrated his 30th birthday with family and friends, but by early August it was confirmed that the tumour had returned in the same spot in his brain. The good news was that it was operable. We traveled to Sydney and he was operated on by Dr Charlie Teo. The surgery went well and we returned home only to have the tumour return one month later, this time it was on the right side of his brain, dangerously close to his brain stem. Again we turned to Dr Teo, who operated when no one else would, and started James on an experimental drug which had showed positive results overseas for GBM. But unfortunately, it was only a matter of weeks before the brain stem tumour returned once again - it came back faster and stronger each time. Then came the heartbreaking moment when the doctors told James' mother and I what we feared the most, that they had tried everything, had been as aggressive as they could and that there was nothing else they could do for him. James was at the end of his life.
We followed James' wishes and took him home from hospital for those last precious few weeks. It was devastating beyond comprehension to watch him go through those final stages, feeling helpless and just trying to make him comfortable. I said my goodbyes to my amazingly brave husband and best friend who I had loved for eleven years, knowing that soon I would never see him again. Even as his body got weaker, he never stopped fighting to live. You could see the determination and strength in his eyes. He endured more hardship and suffering in twelve months than most people do in a lifetime but he never complained, he just did whatever had to be done. James remained strong and dignified until his very last breath on November 7, 2013. When he left us that day, he had a little smile on his face, like all the weight he had been carrying had been lifted from his shoulders and he was finally peaceful and free.
Every day has been hard since then. I miss him desperately and it's an aching pain that will never go away. His memory and his presence are everywhere and I feel that he is still with me, watching over all of his loved ones. I feel so grateful that he left me with the gift of our daughter who will always be a piece of him. She keeps me going. I will make sure she grows up knowing what an extraordinary man her father was and we will make him proud.
I implore others to please support the Cure Brain Cancer Foundation. Brain cancer is one of the most lethal of all cancers but is critically under-researched and under-funded. We need to raise awareness and find more effective treatments for this devastatingly aggressive disease and we need to do it now. For people diagnosed with brain cancer, each moment of time is precious.
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