It was a Friday evening , June 26th 2015 when my husband Mike presented at emergency with a persistent headache. After a series of tests, he was given the all clear and was being discharged with a diagnosis of “stress”. As they had taken blood, I was curious to see if he was low in iron , and asked for the results of his blood tests. I never did get the results. Instead the doctor returned to tell us a CT scan was required. What happened in those next few hours was to changed our lives in an instant. When the chirpy young doctor returned, his face said it all. We were told something was there and a neurologist would speak with us about the findings. The staff now looked at us differently. We were offered a social worker but we refused as we didnt understand why one would be needed. Our fears were confirmed when the neurologist returned to tell us Mike had a tumor the size of a tennis ball on his right temporal lobe. It presented as a Glioblastome Multiforme Stage IV brain cancer. Ironically his father had passed away 10 years prior to the same brain cancer after a 6 month battle – back then we just thought it was rare.
I recall the hospital staff allowing us to put two beds together and I was able to stay with Mike overnight. We googled GBM Brain cancer, most information we read was not promising. We spent that night speaking of the “what ifs”, and we discussed things you never imagine you would have to discuss - the reality of this diagnosis and what would happen IF it were to take Mike away from us. We knew the road ahead would not be easy, but together we would throw everything at it. This was not Mikes battle, it was our battle. He was not alone. Within 24 hours everything changed. Mike went from Mike, a 40 yr father, husband , son, brother, mate and successful business owner to Mike with cancer . Robot mode set in, and we now knew Mike was in for the fight of his life. His words “Just tell me what I have to do and I'll do it better” are still are etched in my mind.
Surgery was a success. The team at Brisbane PA Hospital were able to remove 98% of Mikes tumor. Neurologically everything checked out - some slight weakness to the left and some slight short term memory loss, but all in all his recovery was exceptional. Mikes diagnosis was confirmed- it was GBM stage IV Brain cancer . What we weren’t expecting was that Mike’s vision would be affected. He was now left with no peripheral vision on his left hand side. His love for rally driving, his advanced mechanical abilities and our family owned automotive business were now to be a thing of the past. He could no longer drive, and our time was suddenly dictated by hospital visits and treatment. This meant we could no longer run our business. We chose to walk away and have it liquidated. It was a huge financial hit, but Mikes health was priority. After his craniotomy, Mike experienced his first seizure. Anti-seizure medication was required, as were steroids, to control swelling. Six weeks of radiation treatment was booked, and the slow introduction to oral chemotherapy began. Life was now dictated by hospital appointments. Our son started “Mikes Toughest Rally” on Facebook so we could keep friends and loved ones updated on his progress. This page would soon become a support network for others sharing the same journey. Our friends and family rallied behind us providing food, assisting with household jobs, financial assistance and support .
Allowing us to focus on Mike and our family.
Having to share the horrific statistics and the reality of a 12 month life expectancy, and what the future held for Mike, with our children, family, and friends was the one of the hardest things I thought I would ever have to face. Looking back it was an easy task compared to what lay ahead. Just before treatment started, Mike successfully met the criteria for a world first clinical trial on Immunotherapy here in Brisbane. It was our first bit of hope. On September 24th 2015, Mike was the first patient in the world to undergo this treatment. It gave hope to GBM patients across the nation, and to him. Mike remained well , he was strong and was responding to all three treatments- radiation, chemotherapy and immunotherapy. I became his full time carer, and his eyes. I found it difficult at times watching Mike struggle with day to day tasks. He had never been sick before and could fix anything. It was challenging being on the end of his “roid “ rage, I was often attacked with verbal insults . I had to keep reminding myself it was the monster that lurked within , not Mike. It was a small price to pay for me - after all, Mike was the one who was suffering. Equally as challenging was watching people around Mike. He was now Mike with cancer and all conversations seemed to stem around that. Those close to us soon learned to just be as they were before. It was nice to have some normality back in our lives.
December 1st, 2015 Mike complained of a headache. Within 2 hours, his pain had increased significantly and painkillers had not relieved his discomfort. An ambulance was called and we headed into the PA Hospital's emergency department. A CT scan discovered that he had suffered a subdural haematoma – in short, a bleed to the brain. Over the next 9 days, Mike survived three craniotomies as surgeons attempted to stop the bleeding on his brain. The last operation confirmed our worst fears. His tumor had come back. In 3 days it grew from nothing to covering half the right hand side his brain. The medical team had not seen anything like it in over a decade. Mike now became a case study. We were given two choices. Mike could have palliative radiation which may extend his life expectancy by 5 months or we could do nothing. This gave Mike, at best, a month in this beautiful world. We now had a decision to make. If we chose the possible 5 months , the chances of Mike remaining well were low. His time would again be dictated by treatment , fatigue, increased swelling, neurological changes and it was not guaranteed he would remain as the Mike that we knew and loved. Mike always said if he had even a 1% chance, he would fight. However we were now talking quantity over quality of life. This was the hardest conversation we ever had. Choosing how he wanted to die.
We chose quality. We left that hospital on the 18th December 2015 , looking forward to celebrating our last Christmas as a family. We crammed so much into that Christmas break- camping, a trip to Noosa , New Year’s celebrations with friends. For a short time we enjoyed pretending all was ok. It was hard to imagine time was ticking away. Even though Mike was a moving and functioning a little slower, I honestly believed he had more time with us. With this in mind I decided I would give Mike his much wanted “family road trip”. He had been wanting to hit the road from the time he was diagnosed, but it was impossible with hospital appointments. Our plan was to head to the small coastal town of Nowa Nowa in Victoria. Home to my aunty, uncle and grandmother, who owned the General Store. Mike loved it there . So we packed our things and started driving. Over 2 days we travelled 1700km enjoying the sights, laughing and having much needed family time. Mike stated “we are leaving hospitals behind us and heading towards memories and great conversations.” That’s exactly what we did.
Mike never returned from that trip. We arrived in Nowa Nowa on a Tuesday, late afternoon. We swam in a fresh water hole together on the Wednesday, surrounded by family. On the Thursday Mike declined dramatically with horrific headaches. By early Friday morning he had gained his wings. Whilst brain cancer claimed my husband's life, it never won the battle. Brain cancer can take the very essence of a person and turn them into a former shell of themselves. Mike remained Mike until the very end. Leaving me with three precious kisses on my hand , moments before he slipped into a deep sleep.
A memory that will always remain.