Cancer patients support each other

She slept while sitting up for a year, afraid she might drown in her own saliva.

Kim Flowers was just 44 years old when she was diagnosed with tongue cancer. Surgeons had to remove a third of her tongue, and though they replaced it with a muscle taken from her forearm, she would gag when she wasn’t sitting up, making her too scared to sleep lying down at night.

At times, Kim says, her cancer recovery was almost like the burden of Sisyphus—a figure from Greek mythology who had to endlessly push a large rock up a hill. For Kim, the journey to healing was filled with a gruelling cycle of treatment and therapy.

“After the surgery, I had to go through 30 radiation sessions. I had to start from scratch, such as learning how to chew and swallow, and learning how to walk and talk again,” she says.

“For months, I survived on water, chamomile tea and pureed food.”

She says all she ever wanted was a fighting chance to survive, and survive she did.

From the time she was diagnosed in 2014, Kim wished there were peers she could have drawn strength from.

Peer support was a need that Edmonton’s Dr. Suresh Nayar felt would benefit many patients with head and neck cancer. A support group—the first of its kind in Canada—was launched in September 2018 in Edmonton, led by Suresh, a maxillofacial prosthodontist at the Institute for Reconstructive Sciences in Medicine based at the Misericordia Hospital and an associate professor in the Department of Surgery in the Faculty of Medicine and Dentistry at the University of Alberta.

Many head and neck cancer patients have to deal with psychological and social well-being issues including isolation and depression, and studies have shown that peer support benefits recovery, says Suresh.

“It is literally an in-your-face type of disease because the patient can experience disfigurement and dysfunction such as losing all teeth as a result of the effects of cancer treatment such as radiotherapy and surgery,” he says. The National Cancer Institute in the United States reports that head and neck cancers account for about four per cent of all cancers. Men are diagnosed twice as often as women, and those who receive the diagnosis are mostly over the age of 50. The Canadian Society of Otolaryngology estimated that more than 4,000 Canadians were diagnosed with head and neck cancer in 2018, and more than a third of them (37 per cent) will die from it.

With help from Suresh, Kim and other head and neck cancer survivors got together and formally launched the support group, known as the Head and Neck Cancer Support Society. It now has more than 30 members, with Kim serving as president.

The group implemented a number of activities to benefit patients, survivors, family members and caregivers, explains Kim.

“One of the main things we do is to provide information and to serve as a hub connecting patients with the right experts or facility,” she says. “We try to reach out and we try to be the go-to place for head and neck cancer patients who need help.”

Membership in the support society is free and is open to patients, medical practitioners and caregivers. The group meets regularly at Wellspring Edmonton, where members can also access more than 40 free (healing arts) programs.

“Our first goal is to let people know that we exist. We have been adding more information to our website,” says Kim. She finds it affirming and encouraging that new group members come from across the country, from the U.S. and even from overseas such as Australia. “We incorporate technology to provide (virtual) support to patients regardless of location,” she says.

Before moving to Canada in 2013, Suresh tried to launch a similar group back in the U.K., but it didn’t take off. He says he learned a lot of lessons from that experience, and one of the things he did differently was to secure support as well as funding and then empower the members soon after the launch.

“The group is purely peer-driven with a fully constituted board running it. After setting up the society, my involvement is minimal; however, I told them that I am always willing and able to help whenever they need me,” says Suresh.

The head and neck cancer support society wants to eventually expand services throughout Alberta and beyond, says Kim.

Due to the lasting effects on her body as a result of treatment and therapies, Kim decided to leave behind for good her successful career as a business analyst for the Government of Alberta. Single and without children, she now focuses her efforts on helping others through the group.

“I learned to embrace cancer, and the group gave me the opportunity to feel protected in society. This support society has been healthy for my mindset,” she says.