"I found that I was giving a lot of people advice, and there were so many similar themes, so I thought maybe there is another way to get this information out there, from the patient perspective," Brandon Schauer, pictured with the family dog, said of the brochure he helped create.

Brandon Schauer was always attracted to the bright lights of the city.

Growing up in Pembroke, Ont., northwest of Ottawa, his family used to vacation in Toronto when he was a child. The zoo was one of his preferred attractions while here.

"The rhinos were my favourite. I liked to sit and observe them. It was very calming, very relaxing."

After completing a business degree, Brandon fulfilled his dream. He moved to Toronto in 2017, quickly combining his training with his passion for restaurants and dining into a career, handling operations for a food import company.

"I loved my job, I loved the city, and like so many other people my age, I was so focused on advancing my career, making money and having fun," Brandon recalled from his hospital bed on the 17th floor of the Princess Margaret Cancer Centre.

In November 2019, following an examination of a bump on his head, Brandon learned he had stage 4 lung cancer. It had spread beyond his lungs to his brain, bones and prostate. His diagnosis was terminal.

"I was absolutely devastated," Brandon said of hearing the news, "I cried a lot. It all felt so surreal.

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"I remember when they found cancer on my brain, I was so beyond myself, thinking how is this even possible?"

Brandon's life was thrown into turmoil, suddenly finding himself having to navigate the complexities of the healthcare system, all while undergoing treatment and attempting to come to terms with his shocking new reality at a young age.

"I was so confused and so lost on top of being so frazzled because of my diagnosis," he said.

Brandon lost his battle to cancer in January. He was 29.

Information from the patient's perspective

But in the final months of his life, Brandon's focus shifted to making things easier for young cancer patients who are overwhelmed by their diagnosis and dealing with an unfamiliar healthcare system.

"One of my priorities had become helping other young cancer patients, telling them what I wish I had known when I was first diagnosed," Brandon told UHN News during one of his final stays at the Princess Margaret. "It's essential that there is space for young adults with cancer to connect, regardless of type or stage of cancer; this is our shared experience.

"I found that I was giving a lot of people advice, and there were so many similar themes, so I thought maybe there is another way to get this information out there, from the patient perspective."

The result is a brochure titled So You Have Cancer, Now What? It will be published this spring.

More than 8,000 adolescent and young adults, aged 15 to 39, each year are diagnosed with cancer in Canada, 1,500 of them at the Princess Margaret. Like Brandon, they are often going through important life milestones at the time they get the news – beginning their careers, moving away from their family home, pursuing romantic relationships, starting a family.

"Navigating a cancer diagnosis as a person under 40 is never a part of the plan," says Jennifer Catsburg, clinical nurse specialist with the Adolescent & Young Adult (AYA) Program at the Princess Margaret.

"It is an enormous disruption to this formative stage of life that requires many unique supports."

The AYA Program provides personalized, supportive care related to concerns common to young adults with cancer at the hospital regardless of their stage in their cancer journey.

"Whether patients are newly diagnosed, undergoing treatment, navigating survivorship, or facing an advanced cancer and end of life, our goal is to support this patient population in achieving their goals, even if it means with some modifications and adaptations," adds Jennifer.

While undergoing treatment at the Princess Margaret, Brandon began attending monthly meet-ups hosted by the AYA. Though the meetings were held virtually from the outset of the COVID-19 pandemic, he heard loud and clear from fellow participants the familiar feelings of confusion and loss.

That gave Brandon an idea.

Urges patients to be their own biggest advocate

Drawing on his experience creating promotional materials at work, Brandon set about creating a multi-page brochure. Working with experts at the cancer centre – including social workers, nurses and Patient Education, the goal was to produce "a document that is informative and comes from a young person's voice – Brandon's voice," Jennifer says.

Input from patients is invaluable to the AYA Program. No one knows better what young people facing cancer need than some who is living that experience alongside them.

"The hope is that this will provide our AYAs with factual and current information that could help guide them in getting their questions answered and the resources they need to make their cancer experience a little bit easier," she adds.

The resulting brochure remains true to Brandon. Using the matter-of-fact tone he had become known for at the AYA meet-ups, his overarching message is to the point: I can't promise you the cancer will get better, but I can promise you that you will get better at handling it.

The document covers everything from navigating appointments and results to managing finances. It also highlights support services available within the walls of the Princess Margaret and beyond.

Brandon's brochure urges patients to be their own biggest advocate, citing self-advocacy as one of the most important aspects you will ever learn about your cancer treatment.

"Self-advocacy isn't scary, it's empowering," he said during the interview with UHN News, the clear day affording him an expansive view from his hospital window of the city's west end and shimmering Lake Ontario in the distance.

"It's your care, your decision. Don't be afraid to make your voice heard."

The guidance also goes beyond addressing the more practical realities of living with cancer. Brandon also explored the intense grief and loss associated with a cancer diagnosis, and underscored that managing the psychological and spiritual distress, anxiety, and fear is critical to improving quality of life.

"Your anxiety will be through the roof with cancer, and you have to find ways to cope," Brandon said. "For me, I've found mindfulness particularly helpful.

"It's the idea and concept of looking at your issues in pieces, and one at a time. As a stage four cancer patient, if I look too far at the future, it looks pretty grim. But if I focus on getting through one thing at a time, it helps manage it.

"Being in the moment is a powerful thing."

Last fall, Brandon, his family and his care team decided to stop treatment for his cancer and focus on palliative care, a term he urged patients not to be afraid of.

"When people hear the term palliative care, their mind goes to the worst place, but it really just means pain and symptom management and making your life as comfortable as possible," Brandon said.

'I want to focus on quality of life. I want to allow my family to say goodbye on their terms and begin to grieve properly.

"I want this time I have left to be a celebration of life. Palliative care will help me achieve those aims."

Among Brandon's plans were eating gnocchi and truffles at his favourite downtown restaurant and observing the rhinos at the Toronto Zoo.

'I'm grateful for every day," he said. "If cancer teaches you one thing, it's that you can no longer take anything for granted."

Brandon never denied the dark days, or being scared. But he also acknowledged power in acceptance.

"I think a huge part of cancer has been self-exploration," he said.

"I know so much more about myself now than I did before my diagnosis, and no matter what cancer has taken away from me, I'm proud of who I am."

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