On a Wednesday afternoon in the fall, a dozen people sit around a boardroom table in Edmonton’s Cross Cancer Institute, talking about bread. A man in his 30s scratches his thinning beard and says he can’t open his mouth wide enough to eat a Subway sandwich anymore. Several others say they’ve had to give up bread altogether – it’s too thick and dry to swallow. Through it all, Anna Sytsanko sits at the head of the table and offers tips and advice. She’s the founder of this swallowing therapy support group for cancer patients, and it’s just one of the ways she lets her patients guide their own care.
Swallowing therapy support group founder Anna Sytsanko
Photograph by Curtis Trent
The first thing Sytsanko does when she meets a new patient is ask what they want to get out of the treatment. She’s a speech-language pathologist, which means it’s her job to help cancer patients who are having trouble swallowing, speaking, or both.
Sometimes this is a direct result of their illness, as when the cancer is located in the mouth or throat. And sometimes it’s a side effect of radiation or chemotherapy treatment for cancer found elsewhere in the body, which can impair the body’s ability to produce saliva.
Either way, Sytsanko says, it’s important to let the patient take the lead. “If they’re happy with their situation,” she says, “we have to respect that.”
Sytsanko was born and raised in Russia. As an undergraduate, she studied linguistics at Tyumen State University, before she immigrated to Canada in the 1990s. She received a master’s degree from the University of Alberta in 2004. She was drawn to speech-language pathology because of the breadth of work – it’s estimated that one in 10 Canadians over 50 has some type of swallowing disorder – and because it meant she could work in a hospital setting alongside several other related disciplines. She’s been with the Cross Cancer Institute since 2007.
The occasional reluctant patient aside, Sytsanko says that the bulk of her patients are indeed ready and willing to work to improve their situation – and a surprising number of their goals are built around eating and drinking.
“Often they say, ‘I just want to eat a salad again,’ ” Sytsanko says. “Or ‘I just want to have Christmas dinner with my family.’ So that’s what we set as the goal, and then there are little steps we can take to accomplish it.” Those steps can include a regimen of physical and mental exercises, as well as adjustments to their daily routines. If they can’t get back to normal, Sytsanko works with them to find a new normal.
Eating, she says, is a highly ritualized part of our culture. To have any part of that ritual thrown off – whether because you have to use a feeding tube, or simply because it takes you two hours to chew and swallow a meal – can lead to embarrassment and social isolation, and even malnutrition.
In fact, most of Sytsanko’s stories about her patients’ successes involve food. That’s because if you’re struggling to swallow correctly, something as simple as relearning to eat a cookie, or even ice chips, can feel like a major breakthrough. “Speech pathology is very good at encouraging people,” she says.
The importance of food and drink was made particularly clear at the support group meeting. This is an opportunity for several hospital staff – including Sytsanko, a dietitian, and a nurse practitioner – to treat a group of similar patients all at once.
Attendees to these informal sessions take turns discussing how they’ve been feeling that week, along with reports of any new symptoms or concerns. The staff ask questions as needed, while Sytsanko acts as a kind of moderator. There’s plenty of time for patients to bounce ideas off of one another, too. And by far the most popular topic is food: specifically, what items each patient can or can’t eat.
“You should try French toast drenched in maple syrup,” one patient says. “It’s the best way to keep eating bread.” Her husband, who is at the meeting with her, nods his agreement.
Another patient, holding an extra-large Tim Hortons white hot chocolate – everyone carries some kind of beverage to combat dry mouth – says she doesn’t like French toast.
The first woman’s husband replies, “Ah, but you’ve never had my French toast.”
Meeting with patients as a group isn’t simply a matter of efficiency for the staff. The group setting also provides a huge benefit to the patients, Sytsanko says. When a cancer patient talks to Sytsanko one-on-one, he may be skeptical or unsure of his ability to ever improve. But it’s completely different when he’s surrounded by a group of peers. “They can provide experience and suggestions to one another,” she says. “It helps patients achieve their goals faster, and they often work harder.”
In fact, in the four years Sytsanko has run this particular group, she can only think of one or two patients who didn’t want to come. Despite some language barriers, there’s camaraderie in the air.
One of the attendees this week is Barbara Riddell, a 67-year-old who drives up with her husband from Leduc every Wednesday afternoon. She was diagnosed with tongue cancer in 2011, and began radiation treatment at the Cross Cancer Institute that August. Riddell’s doctors had to replace part of her tongue with skin and muscle grafted from the inside of her left wrist, but she was still having trouble moving food around. That’s when she met Sytsanko.
“I’ve found her to be a warm, caring person,” Riddell says. “And very concerned: if she didn’t have an answer for you, she’d find out and get back to you.” Riddell points out that at the meeting we’ve just stepped out of, Sytsanko had been in and out of her chair fetching headphones, voice recorders, and printed material for the attendees.
Riddell likes to think of her experience with cancer as a journey. “A lot of days it feels like you’re walking on a gravel road in your bare feet. But then, all of a sudden, you get a wonderful day on pavement. You know that there’s still more gravel roads – or sometimes you hit a ditch. But further down the road there’s more pavement.”
And thanks to Sytsanko and the others, Riddell says, “Right now I’m travelling on a lot of pavement.”