It began with a routine e-mail.
A neurosurgeon from Kingston wrote to me in Toronto, looking for help: “I have a new patient referral. 51 year old male post temporal lobectomy for GBM resected in Kingston … name is Gord Downie.”
“Tragically Hip, or a coincidence?” I wrote back, and seconds later learned the awful truth. Like many Canadians, I was a big fan. That doesn’t mean his illness was any more special or sad than any other patient at the Toronto cancer centre where I work, but I understood that this would be a journey unlike any other. To paraphrase Hip lyrics, it was going to get exciting, but certainly wasn’t fair.
Glioblastoma (GBM for short) is a horrible disease. No one who has it can escape its grasp, even if you are a Kennedy, a Biden or a McCain. Gord Downie understood this and was remarkably content from the start. He believed in Canada, and knew that he would receive the best possible treatment in the world. Medical tourism and chasing rainbows can take precious time away from your purpose.
In March, 2016, he was a mess. Memory and language issues are pervasive when the dominant temporal lobe of the brain takes a hit. Those who watched the documentary Long Time Running, which covered the Tragically Hip’s final tour, saw a heavily bearded, shabby-looking Gord in the early scenes; he couldn’t remember if he had breakfast, let alone the lyrics to his own songs. He looked and behaved nothing like the iconic front man that many Canadians adored.
As he began a six-week schedule of radiation and chemotherapy at Sunnybrook Health Sciences Centre in Toronto, his family gathered to help. These treatments take their toll on patients, they suffer from fatigue, brain swelling, nausea and dark thoughts about the incurable disease that hangs overhead. He called these symptoms cruel and crushing but it didn’t stop his dreams. From the first day we met to discuss his post-operative treatment plan, he had goals.
As his early treatment was finishing we began to see remarkably encouraging changes in his neurological abilities. It was at that point that Gord and his family, the band and their management team needed to make a decision about the Man Machine Poem tour planned for that summer.
As a doctor, I’m often asked when my patients can return to work. But this was a bigger ask than usual. Dreams aside, this was a decision affecting a big business. Although I saw improvement in his condition, things can go sideways in a hurry. But I’ve worked with this disease before, treating hundreds of patients a year, and I sensed that he was going to do well. I made the call: Let’s do the tour.
The Tragically Hip crew – from management, to security, to the stage crew, to the drivers – all understood the vision: to honour Gord’s wish to tour, to celebrate the band’s legacy and to give back to the fans who had supported them for over 30 years.
I came on the tour as Gord’s doctor. I made a lot of rookie mistakes as I travelled with the band and worked backstage. I had to learn to wear black to blend in to the backdrop, I had to learn stage lingo and remember my pseudonym when checking in to tour hotels. At times, Gord didn’t want me near, my presence reminding him of what he didn’t want the summer to be about. At other times I was the only health-care professional he would trust.
Just before the tour, I gave a lecture on brain-tumour research in Chicago at the world’s largest clinical cancer-research meeting. Gord was delighted, but concerned about how I would fare in front of an audience of 20,000. He gave me a little advice. Sometimes, he said, he would sing to one person at a time, not the whole arena. Gord told me to speak to one person at a time, and move on. Repeat until finished. Not only did this serve me well, I could see his strategy in his own performances. It’s a brilliant way to do an end run around performance anxiety.
When the tour began in Victoria and Gord stepped onstage in the shiny pink suit and playful feathered hat, I, like so many, was in tears. I had made the right call and I felt the biggest relief of my professional life. Beside me, my wife Meredith, who is an oncology nurse practitioner, said: “Now that is what hope looks like.”
As so the beat went on through the summer. Vancouver, Edmonton, Calgary, Winnipeg, with the machinery headed to Kingston, where it all began for the band and where they would play their final show. Along the way I spoke at dozens of fundraisers and with dozens of reporters about his condition. We planned for worst-case scenarios but at the end of the day the only emergency Gord had was a skin rash!
Tension built as we neared Kingston. Prime Minister Justin Trudeau was invited to the concert and Gord had a message for him. The national broadcast added massive complexity to the Kingston hockey-arena show. Everybody was in it from miles around, and in the end, 11.7 million people watched and celebrated via TV, radio and the internet. There was high emotion in Gord’s voice, he messed up some lyrics, lost his way now and then, but the energy that came from knowing this was his last chance to tell Canada how much he loved his country and its people pulled him and the rest of the band through.
Gord was astoundingly courageous to allow his cancer story to be shared. He generated awareness and raised millions of dollars for research. Just as importantly, he gave other patients a new type of hope by casting away the indignity of the disease and focusing upon what you can do, not upon what you cannot.
We lost him a year ago Wednesday and Oct. 17 will always be a day to reflect. Conveniently for some Canadians, and surely ironic to all Hip fans, this is also the first day of legalized recreational marijuana. I think there will be a lot of Tragically Hip music played today. Please consume it wisely; I will.
James R. Perry, MD, is a professor of medicine at the University of Toronto.