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Brain cancer survivor shares story of hope during Cancer Awareness Month

Jordan Carbery, 49, survived brain cancer and has been cancer free for 19 years
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Jordan Carbery has set up donation boxes for the Canadian Cancer Society’s Daffodil Campaign, which runs during the month of April

Jordan Carbery considers himself a lucky man. Last summer the 49 year old survived a grizzly bear attack, escaping with relatively minor injuries. However, before that Carbery faced down an even bigger challenge: brain cancer. And, in light of Cancer Awareness Month, he’s sharing his story of survival in hopes of inspiring others.

“In 1999 I began suffering headaches and it went on for about a year,” said Carbery. “I was sent to a neurologist and I actually passed all of the tests, but luckily I mentioned my vision problems on the way out the door, and this alerted the doctor to what was really going on.”

Carbery’s vision problems meant that he couldn’t look up. This is a classic symptom of ependymoma, a glial tumor of the cells that line the spinal cord and ventricles of the brain. It is rarely diagnosed in adults as it most often affects children and young adults; in Carbery’s case the tumour was causing hydrocephalus - an accumulation of cerebrospinal fluid (CSF) that occurs within the brain - which in turn was causing his headaches and vision problems.

He was scheduled to have a shunt put in to drain the fluid the following week and rather than travel home to Keremeos he opted to stay in Kelowna for the weekend, feeling more comfortable closer to a major hospital. It turned out to be a good decision.

“That Sunday I simply couldn’t get out of bed, I actually crawled out of my room on my elbows,” he shared. “They took me into emergency and I flatlined on the gurney.”

Carbery received the shunt that day to drain the fluid in his brain and was scheduled for surgery a few months later. It was a 16-hour open brain surgery conducted by Dr. Brian Toyota, someone for whom Carbery still holds great affection.

“He was an amazing surgeon,” Carbery said. “The tumour was between the size of a golf and a tennis ball, and he removed as much as he could in 16 hours, but he couldn’t get it all, so I had to follow up with radiation a few months later.”

Carbery was worried he wouldn’t recognize his daughter or would lose some other functioning after the surgery, but thankfully that wasn’t the case.

“They were trying to wake me up and I could hear them calling ‘Robert, Robert,’” he recalls. “I was feeling bad for this Robert guy, thinking he wasn’t waking up when I finally came around and realized they were referring to me. I woke up and said, ‘Oh, I go by my middle name, Jordan.’ That’s when I knew I was fine.”

Carbery headed home after just five days and was back to work two weeks after his surgery. He finished his radiation the following December and has been cancer free ever since.

Carbery said the first time he saw someone wearing the daffodil, the sign of the Canadian Cancer Society’s Daffodil Campaign, he felt filled with gratitude.

“It’s a small thing but wearing that pin shows that you have support and you’re not alone,” he said. “Every time I see someone wearing a daffodil pin I feel grateful.”

The Canadian Cancer Society’s Daffodil Campaign, which runs through the month of April, is set apart by the fact that all the funds raised go support programs, groundbreaking research and advocacy efforts, something that directly benefited Carbery.

“The radiation I was treated with was a new type of treatment at the time,” he said. “Without those funds those treatments wouldn’t be developed, and things could have turned out differently for me. I’ve been cancer free for 19 years, but I still think about it every day.”

Carbery has set up boxes around town and people can donate there or go online to donate at www.cancer.ca.