How cancer coaches help patients navigate an overwhelming diagnosis
'I don't know where I'd be at today without a cancer coach,' says Ottawa mother
Jocelyne Liko remembers the first time she walked into the bright, sunny office of her cancer coach, Bonney Elliott, who helps her cope with her recovery.
"I felt, 'Wow, this woman really knows how I'm feeling,'" Liko told Dr. Brian Goldman, host of White Coat, Black Art.
The Ottawa mother is a breast cancer survivor. In 2016, she had surgery and radiation for a tumour. Her doctors prescribed medications to keep the cancer from recurring. But by early 2017, the side effects from the meds were making her life miserable: swelling in her arm, pain in both wrists, fatigue and worst of all, a mysterious neuropathy that made her feel as if raindrops were landing on her skin.
I felt, 'Wow, this woman really knows how I'm feeling.'- Jocelyne Liko, breast cancer survivor
"I would look around and go, 'Where is this water coming from?'" Liko said. "But it was just neurological. Very strange sensations."
Liko, 52, needed help, so she tried something she'd heard about by chance: a cancer coach.
Popular in Australia and England, cancer coaching is just starting to gain a toehold in Canada. The Ottawa Regional Cancer Foundation is the country's only cancer facility that employs paid cancer coaches, according to its CEO and president, Linda Eagen. But patients do not pay out-of-pocket.
Cancer coaching is highly specialized to each patient. They get five hours of time with a coach, where they work to identify supports that will help them through the cancer journey.
Needs differ from patient to patient, said Eagen.
"Things such as I don't know how to tell my children that I have cancer; should I be eating this or eating that; I can't sleep; I'm always tired. What can I do for myself?"
Other clients ask for assistance in creating medication plans or even managing their finances.
Meditation, art and other outlets
For Liko, it was finding someone who understood the torment of her side effects.
"It didn't take long for me to recognize that she really had an awareness of what I was struggling with, and she took me seriously."
Her coach Elliott said it was easy to understand Liko's pain and frustration.
"She's a woman with four kids who had a very busy active life and was responsible for a lot of people. She needed to find a way to cope with her pain and to live with it. So she did mindfulness training, and I think that was really pivotal for her. She said it really shifted a lot of things in her life," Elliott said.
On Elliott's advice, Liko attended a retreat for breast cancer survivors where she took up art. But Liko said the fact that Elliott listened and acknowledged how much her symptoms were interfering with her life was key.
"It was just a really important part of my recovery."
'It greatly reduces my anxiety'
In early 2017, Chris Moore turned to a cancer coach to help him cope after he was diagnosed with a glioblastoma multiforme or GBM, a final stage brain cancer. It is the same disease that The Tragically Hip's Gord Downie was diagnosed with.
"It has been quite overwhelming in terms of diagnosis and treatment plans. And this whole journey has been quite overwhelming."
"The very first second I knew what I was going to go through, I started looking for some help," said Moore.
The 44-year-old was paired with Nasser Yassine. The cancer coach specializes in nutrition and exercise, two aspects on which Moore wanted to focus.
Yassine connected Moore with the local brain tumour support group and helped him plan his return to part-time work as an aerospace engineer with the federal government.
Then he helped Moore to focus on what was most important to him after his diagnosis.
"Sometimes it's like looking and saying with all this happening, 'What are my priorities right now?'" Moore said.
'We all need a coach'
Moore's priorities changed last January. His GBM had returned, so he decided to put his job on hold to spend more time with his wife and three sons. Again, he turned to his cancer coach for support.
"I don't know what the future is going to bring. But knowing that I have an outlet that I can turn to, it greatly reduces my anxiety and gives me a lot of confidence."
Liko's confidence also got a boost from her coach, and she believes they should be available across the country.
"To think that there are people out there that are having the same struggles if not worse. And they don't have this kind of support. I just can't imagine. I don't know where I'd be at today without a cancer coach."
This is about helping people. It's about sustaining our health-care system. We need to find out ways to build it into what we're doing. Because one in two of us are going to have cancer, and we all need a coach.- Linda Eagen, Ottawa Regional Cancer Foundation's president and CEO
Eagen's goal is to have cancer coaches in hospitals right across Canada. Her sales pitch is based on both compassion and economics. She said that studies have shown that coaching patients reduces health-care costs and leads to fewer hospital admissions.
"This is about helping people. It's about sustaining our health-care system. We need to find out ways to build it into what we're doing. Because one in two of us are going to have cancer, and we all need a coach."