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Cancer survivor delivers powerful message

People might think an illness, such as oral cancer, won’t happen to them.

But Gruen Von Behrens is proof that it can, especially when you are a tobacco user.

The 34-year-old oral cancer survivor, who lost much of his neck, chin, and tongue to the disease—and no longer can speak clearly—offered his message to students at Fort Frances High School last Thursday morning, hoping his story helps them make the right choice about tobacco.

“Because I wish I would have,” he stressed.

Von Behrens, a national spokesperson for Oral Health America’s National Spit Tobacco Education Program (NSTEP), toured the region last week thanks to sponsorship by the Thunder Bay District Health Unit, in partnership with the Northwest Tobacco Control Area Network and Regional Cancer Care.

He was only 13 when he tried chewing tobacco (also known as dipping) for the first time. Even though it made him sick and dizzy, he tried it again and again—until he was addicted.

“I wasn’t thinking about the long-term effects,” he remarked. “I liked the way it tasted, the way it made me feel.”

But halfway through his 16th year, he noticed a white spot on his tongue where he’d been holding the dip in his lip.

“I thought it would go away,” he explained. “But in nine months the white spot didn’t go away.

“What started out as the size of the tip of a pencil had grown completely through my tongue.”

At 17, his tongue was split in half by what he said he knew was probably cancer. Yet he didn’t tell anyone he was sick.

He was a high school baseball star, but his coach had a tobacco-free policy and he would have been kicked off the team. As well, he didn’t want to tell his mother because he knew how deeply his illness would hurt her.

His mother would question why he was slurring his words and drooling all the time, and he blamed it on his wisdom teeth.

Then his mother surprised him with a trip to the dentist to have his wisdom teeth removed—and that’s when the truth came out.

“Until that day, I had never saw my mother cry like that before,” Van Behrens told the students sitting quietly in the Townshend Theatre.

It later was confirmed he had squamous cell carcinoma.

Soon, he was undergoing his first of 34 surgeries. He spent 13 hours in the operating room, followed by a month of recovery in the hospital.

He was fed through a tube in his nose for the next nine months and underwent hundreds and hundreds of more treatments, including radiation. Over this time, he lost 70 pounds.

He had most of the skin removed from his face, and all his teeth were pulled since they had rotted from the tobacco and radiation.

Doctors removed his entire mandible, taking the fibula from one of his legs to make a new jaw bone. They took skin from his thigh for a healthy piece of tissue.

“I went from a person people looked up to, to the person people looked at, talked about,” he recalled, noting doctors still are trying to put his face back together 17 years later.

“Kids have the image that tobacco is a cool thing to do, but let me ask you this—how cool does this look?” he asked, referring to his disfigured face.

“And all because of the choice I made.”

Von Behrens said his experience with oral cancer also taught him many deeper lessons, such as not judging people by what they look like on the outside.

“I was always myself,” he stressed. “My parents didn’t care about what I looked like. They love me for who I am.”

Steve Tomé, youth engagement facilitator with the health unit, noted the use of chewing tobacco is 10 percent higher in Northern Ontario than the rest of the province.

And they wanted students to understand that dipping is no safer than smoking cigarettes. In fact, one dip of chewing tobacco between your gums for 30 minutes can release the same amount of nicotine as smoking three-four cigarettes.

Tomé also told students about the “Flavour Gone” campaign—developed by youth in Northwestern Ontario—to ban flavoured tobacco.

The federal government eventually passed Bill-C32 banning flavouring in blunt wraps, the ban of singles and kiddie packs, proper warning labels on cigarillos, and the ban of flavouring agents in cigarillos.

However, the bill did not ban flavoured chewing tobacco, which still is sold in brightly-coloured tins with yummy sounding flavours.

Now the campaign is fighting to ban all flavours in all tobacco.

Many Fort High students signed the petition at the end of Von Behrens’ presentation.

More information is available at www.flavourgone.ca, where the petition also can be signed.

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