Before and after is something that resonates with Claire Snyman. In her “before,” she was born in South Africa, where she met her husband. The pair moved to Sydney, Australia, and then to Vancouver, B.C., where they welcomed their son.

It was on May 18, 2010, that the “after” would begin.

“You know how it is when you remember these things?” Claire asks. “That’s when things changed.”

The day everything shifted

As Mom to a then-four-year-old, working as a consultant in pharmaceutical and biotech marketing, Claire had a sudden onset of migraines and vertigo. Her doctor suggested she go to the emergency room to rule out meningitis.

Doctors did a lumbar puncture and bloodwork, and sent Claire off for a CT scan.

“I remember so distinctly laying on the CT scan table and looking up,” she says. “There was a maple leaf on the roof.”

It’s a moment that is ingrained in her memory, along with the moment that came next. Having gone back to her bed in the emergency room, she heard the doctors conversing outside.

“‘This is a really rare one,’” she recalls a doctor saying. “And I was like, ‘Oh, that’s tough for the person they’re talking about.’ I didn’t realize they were talking about me.”

The neurologist on call broke the news that she did, in fact, have viral meningitis, but she also had a non-malignant brain tumour called a colloid cyst. The tumour wasn’t thought to be causing her symptoms, however, and at a medium size, doctors said the risks outweighed the benefits when it came to surgery.

Claire was told to return for yearly MRIs to monitor her tumour and to see her neurologist about managing her migraines.

“I think the biggest thing for myself was having to live with the reality of having something inside my head that wasn’t supposed to be there and the uncertainty, each time I had a migraine,” Claire says. “I remember being devastated, thinking, ‘Would I get to see my son grow up?’”

Living with uncertainty

Given where her tumour was located, there was concern about the tumour blocking the flow of fluid in Claire’s brain and causing swelling, or hydrocephalus. Feeling as though she was not equipped with adequate information about her condition, Claire turned to online searches in hopes of learning more.

She found her way to a Facebook support group for others who had her exact tumour type, which affects three people per million. There were about 250 people in the Facebook group, Claire says, which was a source of comfort for her.

“You can go down a really dark, deep vortex of information,” Claire says. “It was good to have other people balance that out, and hear what they were doing and what their experiences were.”

She also had to learn how to navigate the health-care system, which she calls a “baptism of fire.”

Having to frequent her family doctor more often, see multiple specialists and take medication, in between her MRI and emergency room visits, caused a lot of stress.

“It was figuring out when it was an emergency, when it wasn’t, when it was a migraine, when it was not,” says Claire. “It was hard to learn to deal with that and live in the present, and not the ‘what ifs.’”

Claire dealt with the uncertainty by seeking second, and even third opinions.

“I had to make sure I was confident in the medical team around me,” Claire says. “My brain tumour is rare and Vancouver is a small place. I wanted to go for more than just one opinion—so I did.”

Family support was incredibly helpful, as was taking a step back at work. A year after her diagnosis, Claire decided to reduce her hours from five to four days a week, so she could spend more time with her son.

“These things make you reassess your life, in a way.”

Trusting her instincts

She continued regular visits with her medical team as well, until she was told 18 months after her diagnosis that MRIs were no longer needed because her tumour was stable.

Claire reached out for a second opinion from another medical professional, who recommended she continue her regular MRIs. So, she says she began getting private MRIs, though the experience broke her trust with her “circle of care.”

Two years or so after her diagnosis, Claire woke up feeling as though the room was spinning. She had a migraine that wouldn’t subside, even with her medication. Her family doctor prescribed additional medicine, which still didn’t help. A week later, her family doctor recommended Claire head back to the emergency room, giving her a note to share with the ER doctor.

“By now, I’m not feeling good,” Claire says. “I’m groggy, I’m tired, I knew something wasn’t right.”

The ER doctor spoke with Claire’s neurologist, who suggested migraine medication administered intravenously. Although Claire requested a CT scan, which was also recommended by her family doctor, she was sent home without one.

She reached out to her second opinion, who was located in the U.S., and was told to get an MRI immediately. After another private MRI, Claire learned that her tumour had doubled in size and her brain was swollen, signalling hydrocephalus.

Not feeling confident in the care she received from her neurologist, Claire again contacted her second opinion before she and her husband left for the U.S.

Surviving surgery—and what came next

“When I arrived, I went straight to the ICU because my condition was deteriorating,” says Claire. “I knew I had to have brain surgery, but I didn’t feel anything about it because by then, my brain was too swollen to process emotions. My legs were starting to get weak and my memory was starting to fade. And so, I actually wasn’t scared about having brain surgery until I was lying on the operating table.”

Claire’s surgery, which took eight hours, was a success. She spent five more days in the ICU, before having to return for two weeks due to symptoms she was continuing to experience.

Recovery was a long process that Claire says she wasn’t prepared for.

“Even six months post-op, I was sleeping during the day,” she says. “I would sleep for five hours during the day and have a full night’s sleep too, because my brain was just broken.”

Under the care of a new neurosurgeon, Claire learned it could take up to a year for her to feel “normal” again.

“He was spot on,” she says, of her neurosurgeon’s prediction. “After a year, I was starting to feel good. But I think it’s twofold, in that there’s a physical aspect of recovery from brain surgery but there’s also the mental aspect, and the challenges that come with that.”

Mental health matters

It was during a walk with a friend, who asked her about her mental wellness, that Claire realized she was struggling.

“Every time I went to sleep, particularly during the day, my mind would go through every aspect of the week before I had brain surgery,” Claire says. “It was like a film reel.”

A psychologist diagnosed Claire with post-traumatic stress disorder (PTSD).

“She said, ‘Your brain doesn’t feel like it’s safe, and we have to take it back to a place of calm and safety,’” Claire recalls.

She began writing down her thoughts and feelings as a way to cope. Eventually, her psychologist suggested she consider turning it into a book to help other people.

“I was like, “Wow, I never thought about that,’” Claire says.

Claire changed the way she was writing, gearing her words towards an audience. By 2015, her first book-Two Steps Forward: Embracing life with a brain tumour—was published.

“That gave me a lot of joy and inspiration,” Claire says. “It opened the door to a whole different universe of meeting people, of doing things.”

“It’s amazing what you can do when you’re willing to be vulnerable and share your story with people.”

Wanting to find a way to give back, Claire began volunteering with Brain Tumour Foundation of Canada’s BrainWAVE program—earning a Volunteer of Distinction award for her work in 2017. She contributed to the program for 10 incredible years, saying she loved the experience.

“I have a brain injury, which comes with short- and long-term memory issues and cognitive challenges,” she says. “I just have to be mindful of my bandwidth and I have to be mindful of where I place my energy at this point in time.”

A voice for change

In 2018, Claire participated in a TED Talk, which would become the basis of her next book—ACTIVATE: How to save your life in a complex health care system.

These days, Claire is dedicated to improving the patient experience, both nationally and internationally.

“I know it’s often the small things that can make a big difference,” she says, of being a patient, and now a patient partner, in the health-care system.

She is adamant about advocating for your own health, given what she went through.

“It’s important to connect with people who are going through the same thing and to advocate for your health, because no one else is going to do it for you,” she says. “If I hadn’t asked for a second opinion, I wouldn’t be here today. There’s also the importance of mental health when it comes to brain tumours, which needs to be prioritized.”

Claire spearheaded virtual sessions with patients, families, caregivers and care team members during the COVID-19 pandemic, in an effort to learn what mattered most to them in their journeys.

“I know what matters most to me, but I wanted to find out what matters most to everyone,” she says.

What was, to her, not surprising, is the mental health challenges that were reported. With the help of another brain tumour survivor, Claire created a section on her website geared at helping those suffering from mental health challenges.

“I actually think I’ve landed in a better place with regards to what I’m doing workwise,” she says. “The people I’m meeting, the places I get to speak at, the conferences I get to go to—I find them all so much more meaningful than I probably would have. So, I think that’s the silver lining in it all.”

As for other silver linings, Claire’s family has learned to appreciate her new state of mind.

“There’s a lot that you have to grieve, because I can’t do things with the ability that I used to,” Claire says. “But, as my son says, ‘It’s so cool that you can watch movies so many times because you don’t remember them!’ You have to find things to be grateful for.”

Listening to her body

Claire has also gained an appreciation for when to say no.

“I get a warning of the yellow traffic light when my brain is saying, ‘If you’re not going to slow down, you’re going to get a red traffic light,’” she says. “When that red traffic light comes, I often have no option. It’s a very physical response in my body. It’s like, ‘You have to go to sleep now.’ Maybe I have to spend the day in bed, or maybe I have to cancel my meetings. It’s always important to pay attention to the traffic light in my life.”

Slowing down has been a key part of Claire’s journey—listening to her body and her brain, and accepting that this is her reality.

“Change is the only constant in life,” she says. “There’s always something going on, so you just have to ride the wave and figure out how you’re going to surf it.”