For a while, Amy Sumbrum did her best to connect patients with each other informally, creating a sort of ad hoc support group.
She understood they were dealing with side effects that other cancer patients didn’t endure. As a speech-language pathologist in the Department of Head and Neck Surgery at Roswell Park Comprehensive Cancer Center, she was sympathetic to their need to connect with others going through a similar situation. Yet there were no support groups in Buffalo that focused on oral, head and neck cancers.
It was in 2008 when the wife of one her patients told her about a support group in Rochester, a chapter of the national organization Support for People with Oral and Head and Neck Cancer. A few phone calls later, the two were starting the Buffalo chapter, with monthly meetings to help patients, caregivers, spouses, and survivors, share their stories.
“It’s really about connecting patients with Oral and Head and Neck Cancer because some of the side effects are so unique to that disease,” Amy said. “In particular for Head and Neck Cancer, speech is affected and so is swallowing.
“A lot of people are on feeding tubes and they’re in their 50s and 60s. Suddenly, they can’t eat anymore by their mouth. It’s difficult on a social level for them to go out. Think about it – when we socialize, what do we do? We eat and we drink. They feel isolated, like they can no longer go out with friends or family. That’s one of the biggest things.”
And so the group gets together monthly to share their struggles and triumphs, to get tips and tricks and encouragement. Caregivers are welcome as well.
“What’s nice is that it’s been more than 10 years and some of the patients that started with us have come back,” Amy said. “We tell them that we need them to support the patients going through it now and they’ve developed this type of counseling role.”
The group originally met at Roswell Park, but patients didn’t always want to return to the hospital. So Amy began looking for a place with a more welcoming appeal. They met for some time at Gilda’s Club on Delaware Avenue, but after that closed the group looked for a new venue and found their way to Kevin Guest House.
“It’s amazing to be at this welcoming comfortable, beautiful space,” Amy said.
The Support for People with Oral and Head and Neck Cancer meets the third Wednesday of each month from 4:30 to 5:45 p.m. at the Russell J. Salvatore Hospitality House at 766 Ellicott St.