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AYA Program at UHN helping young patients find community
​​​"Everyone was on the same page, yet on completely different avenues in life," Brendan Yhip says of the Adolescents and Young Adults (AYA) Program at Princess Margaret Cancer Centre. "Being able to look at others’ stories and find a sense of peace and closure that this is not just me, I'm not doing this alone – it was really incredible." (Photo: UHN)
Brendan Yhip was 27 when he took the biggest gamble of his life.

He had two choices: remove a suspected low-grade brain tumour at the risk of losing his vision, speech, memory and cognitive functions; or, do nothing and hope the tumour didn't spread throughout his brain.

"I felt my whole world stop," Brendan recalls of the moment he learned his options.

"It was absolutely jarring."

Brendan opted for the surgical route and, eight months later, made it out the other side.

But he says if it weren't for the Adolescents and Young Adults (AYA) Program at Princess Margaret Cancer Centre, things may have turned out differently for him. The program not only helped Brendan find the comfort and community he needed to get through it, but in time, he became that same support for other patients.

Now, he's found new meaning in his life through sharing his story and helping other people.

"It was a very isolating, life-altering experience and I found comfort in knowing that I wasn't alone," Brendan says. "When you have those moments of connection with others, it really puts things into perspective.

“It brings you back down to earth."

Simone Kurup, a social worker in the AYA Program, says Brendan is not the only one who feels this way.

Among the adult patient population at the Princess Margaret, only 10 per cent fall between the ages of 18 and 39. The AYA Program was created in 2014 in recognition of the need for connection in this age group.

"There's a lot of developmental milestones and important relationships that young adults experience during this time that lay the foundation for their future," Simone explains.

"It's already a tough time – then add a cancer diagnosis to that – and their whole world is flipped upside down."
 
Simone Kurup, (L), pictured with Brendan Yhip, is a social worker in the AYA Program. She says it is a safe space for patients to unpack their thoughts and feelings with like-minded people, while simultaneously figuring out what happens next.
(Photo: UHN)
The AYA Program includes a medical director, advanced practice nurses, a social worker, a school and work transition counsellor, and a program coordinator to help young adults navigate their cancer experience in a holistic way.

Simone says the idea is to not only create a sense of community by bringing patients together, but to give them the resources they need to go back to "normal life" as best they can – which is one of the toughest parts.​

"Nobody ever talks about how hard it is to transition back into school, work or a sense of social life after cancer," she says.

Many patients experience shifts in perspective, career changes and difficulties with relationships that they need help working through – all of which can get lost in the busy medical world, she says.

Simone adds that it's not uncommon for patients such as Brendan to go through their entire cancer journey without processing what happened to them, or how it will affect their future.

The AYA Program is a safe space for patients to unpack their thoughts and feelings with like-minded people, while simultaneously figuring out what happens next, she says.

"It's like a sounding board to help patients figure out how to navigate this difficult time while empowering them to be advocates for their own health experiences in their lives," Simone says.

For Brendan, the trauma he unpacked was three-fold.

While he was initially diagnosed with a benign brain tumour when he was 12 after experiencing a series of seizures, it wasn't until he was evaluated 15 years later that doctors discovered it was growing and could get worse if it continued.

The initial shock of tumour growth after such a long period of stability was difficult for Brendan to handle.

'I'm not doing this alone'

Then there was the fear of the procedure itself, on top of the recovery that followed.

"I went from being a child to a full-grown adult thinking this was nothing to worry about," Brendan says.

"Now, I was scared I was going to lose everything I worked towards in my life."

After Brendan had his surgery, the biopsy confirmed his tumour could have potentially became more aggressive and undergone malignant transformation​. If he hadn't done something about it, his doctors said his brain could have gone on to grow tumours like flowers.

Thankfully, the surgeons at Toronto Western Hospital removed it before it had the chance spread throughout his brain.

But it wasn't without its challenges.

All of the risks associated with the craniotomy happened to Brendan.

He lost his peripheral vision, communication and speech, and cognitive functions. He gradually recovered his abilities with the help of the Toronto Rehab, where he completed treatment last June.

It wasn't until that point that Brendan was able to hit pause and truly process everything that happened to him.

Despite differences in age, health and other demographics, all the patients in the AYA Program shared the goal of moving forward and embracing their diagnosis. Their support helped Brendan understand how he was feeling.

"Everyone was on the same page, yet on completely different avenues in life," he says. "Being able to look at others' stories and find a sense of peace and closure that this is not just me, I'm not doing this alone – it was really incredible.

"I don't know what I would have done without them."

'The program connected, uplifted and inspired me'

Brendan says one of his most pivotal moments was meeting a patient who was about to go through the same surgery he did. While Brendan's vision was still impaired from his procedure, he says he didn't need to see their face to understand exactly what they were feeling.

"I heard it in their voice," he says. "Right down to the words they used to describe it.

"I felt that individual's complete fear."

He was able to assure them that he understood exactly what they were going through, while providing the optimism that it was going to be okay.

Being able to see eye-to-eye with another patient in that moment is when Brendan felt his life change. He found new meaning in helping other people.

"It was a unifying, gratifying and inspiring experience," Brendan says. "It completely changed my purpose."

With the help of Sharon D'Souza, transition coordinator in the AYA Program, Brendan was able to pursue a career in patient experience while simultaneously working in his job in marketing.

Now a Patient Partner at UHN, he offers his perspective on almost 10 different projects across the organization. His work mainly focuses on ironing out kinks in the experience of patients and helping those who are vulnerable and trying to move forward.

"We're all working towards improving and becoming bigger and better people," Brendan says. "I want to share my perspective and experience to contribute in any way I can."

When Brendan went into his surgery almost two years ago, he wasn't sure what to expect.

"I tried to go into it with an open mindset, but it was very, very scary," he says.

Now, thanks to the help of the AYA Program, he considers it one of the best things that's ever happened to him. He turned the experience into an opportunity to change his life.

"After my surgery, it allowed me to restart," Brendan says. "The program connected, uplifted and inspired me."

Now, Brendan says he feels like his best self.

"I feel better than I've ever felt before."

This story first appeared on UHN News