Six people are diagnosed with brain cancer every day. Four people die from brain cancer every day. That’s been the case for 30 years – the treatment and survival rates are unaltered. It remains the leading cancer killer for people under the age of 39 and children under 10.
Basic bald facts that hide the cost of the tragedy of a terminal diagnosis – and a diagnosis of Glioblastoma is always terminal. Facts and statistics hide the pain, the tragedy, the loss of a husband, a father, a friend. Grief can be tragically educational, but it’s always raw.
So it is for Carrie McLeod, registered nurse, occasional photographer, and mother of two daughters. Her partner, friend, husband, father of their children, Brian, died from Glioblastoma Multiforme (GBM).
The most common and most deadly form of brain cancer, GBM brain cancer has no cure and an average of three to six months survival without treatment and 15 months with treatment. Treatments we know only give time, do not cure.
His death came after a 3⅓-year battle. He died at 4.24am on March 9, just outside what literary types call the “dead hour” in hospitals, because this is the time when silence hangs heavy and people generally sleep deepest.
“Brian’s final time was nothing short of horrific,” Carrie says.
“He’d been predominantly non-responsive for 48 hours. Every breath for the last 24 was taking every ounce of minimal energy in his body, and he had needed suctioning frequently. Hourly for the last eight hours.
“I played instrumental versions of music from various decades on Spotify, told him stories of things I remembered. I’d have micro naps but for the last couple of hours but didn’t want to fall asleep. At 4am, the nursing staff did another turn and suction from his lungs.
Carrie and Brian McLeod.
“I am known as a pretty tough cookie, but it was torture to watch him hang on so long. At about 4.20ish, I whispered to him the particular things we would all do to be sure his Mum would be OK.
“...I promised she would be OK and that we would look after her. Within two minutes, he took his last breath, and the instrumental version of Sailing by Rod Stewart was playing.”
But there are no words to adequately tell of the pain and loss of a partner. Grief is a cruel kind of education. You learn how ungentle mourning can be, how full of anger, and you learn how glib well-meaning condolences can feel.
“Brian was always my heart and soul,” Carrie says.
“Even when his behaviour was off and I could not stay with him, I think I always had hope.
“I always knew he was a beautiful-hearted person, and to have any hope taken away and your children lose their father, there will never be the right words to describe my nauseating heartbreak. And my devastation for his Mum.”
They met at work in July 2000, married three years later, and daughters followed in 2004 and 2005.
Brian was known for loving a good time, would never miss Friday afternoon work drinks, and had a sturdy appreciation for all types of music. AC/DC, Frank Sinatra, Elton John, Queen, the Bee Gees and was quite the fan of Jessie J and Taylor Swift in recent years.
But somewhere along the line, things started to change. Mood changes were evident, and decision-making was off.
“Many of his decisions and behaviours that we knew were not him were very highly likely the result of a left frontal lobe brain tumour that days later we would discover to be,” Carrie says.
“When I heard the diagnosis, I felt immediate panic. I vividly remember falling to the floor and smashing my fists on the ground.
“We planned trips, his Mum, the girls, him and I... in the following three years we saw Tasmania, took the girls to our honeymoon location in Fiji, two visits to family in New Zealand, and weekends closer to home with friends.
“He took his best friends (as close as brothers) to Thailand and spent a weekend with old work friends in Sydney. He did not quit drinking, he did not quit smoking, he ate what he loved. As his beloved Frank Sinatra would say and Brian always sang, he was always going to do it his way.”
Like most cancer treatments, they leave the patient feeling sick and fatigued with a depleted quality of life.
“Through the vomiting, the headaches, the hip replacement (result of Avascular Necrosis of the right hip... a side effect of dexamethasone, a steroid used to reduce brain swelling), three monthly MRIs, the pain and the terminal diagnosis, he never complained. Never,” Carrie says.
“And this is where my determination to ensure his legacy lives on stems from.
“...The last oncologist visit where we were told the treatment wasn’t working was torture, and I will never forget her words: ‘We need better treatments.’
“She was professional always, but I can only imagine the frustration of knowing each time a patient with a GBM diagnosis enters her office, how complex it must be to know there is always a time that comes where nothing more can be done, that with GBM, this patient will die.
A quick decline: Brian McLoed with his family at the Canossa Palliative Care at Oxley.
“There has been no change to this statistic in 35 years. We need more money for research, and we need more awareness. We just do. Breast Cancer has a symbolic pink ribbon – something of hope – but brain cancer has that soul-destroying rainy day sadness of grey.
“I watched my tall, strong, loving husband have his dignity slowly stolen from him.”
In one week, thanks to a tribe of generous people via GoFundMe, we were able to raise the $20,000 to buy a ‘Cuddle Bed’ for Canossa Palliative Care at Oxley, in Brisbane’s south-west, that will allow couples like us to hold each other in the most critical moments of life.
“I’ll be forever grateful to Canossa for bringing in the bed to trial prior to purchase when they saw the outpouring of love from the community and subsequently, the money flowing in,” Carrie says.
“There is a line in My Way that we have used throughout his cancer diagnosis and since his passing on March 9 ‘I faced it all and I stood tall’.
“Brian did that in droves, stood tall, and now as I grieve for my soul mate, I aim to do that for him and hopefully live to see a cure.”
For now, Carrie hopes to continue fundraising.
“This year I will hold our third Brain Teasers for Brain Cancer fundraising trivia event, and am working toward a film project to educate the community in a manner that more funds are pushed in the direction of find a better treatment,” she says.
“Now I am looking for money to fund an awareness film to educate the community that behind every terminal diagnosis is a family, partner, children who experience the greatest of tragedies.”