Gwich’in cancer survivor Agnes Pascal’s new book, Book of Hope: Healthcare and Survival in the North, documents stories of 30 northerners on what it’s like to experience cancer in remote communities.
Pascal was diagnosed with breast cancer in 2015. Prior to that, she worked in health care offices booking appointments for patients – never expecting to one day be on the other side of that phone call.
“They say that when you hear news like that, your whole life flashes before your eyes, and it’s true!” Pascal said. “I’m a single parent and my children are my biggest concern.”
“I wondered, if I have cancer, am I going to die? Who will care for my children, or who would I be able to trust to love my children as I do?”
Shortly after her diagnosis, Pascal underwent surgery in Whitehorse and began chemotherapy at the Cross Cancer Institute in Edmonton. Her treatment plan included six rounds of chemotherapy, a six-week break, followed by six weeks of radiation treatment.
“A lot of times I went into depression during my treatment because I was far away from home and had no support,” she said. “But I was one of the lucky ones who always had an escort on each of my medical trips.”
In the Northwest Territories, most cancer patients will have to travel for medical care at some point. A non-medical escort – usually a family member, friend or eligible person – is often a lifeline during this time, when patients may be physically and emotionally vulnerable.
“A lot of patients don’t understand medical terms, some are not able to speak English, some are in shock or depression and don’t know what type of questions to ask,” said Pascal. “So an escort is really important at a time like that.”
“You choose an escort who is able to have patience and a connection with you because at times when you’re not in the best mood, they can understand you and not take that mood personally but just be there for you.”
But not all patients are guaranteed an escort on every trip, and not every escort is able to provide proper support due to a lack of training, unclear responsibilities, and limited financial incentives.
Monfwi MLA Jane Weyallon Armstrong raised concerns about delayed escort approvals during a GNWT briefing last year.
Patients under the federal Non-Insured Health Benefits (NIHB) program often have to wait for approval from Ottawa, which operates Monday to Friday, 8:30 a.m. to 5 p.m. – making it difficult to get approval for emergency travels after-hours or on the weekends.
“There’s also a lack of support for cancer patients while we travel,” Pascal added. “Like I can be done with my chemotherapy today and I’ll be on the plane tomorrow, not thinking of the side effects that are kicking in around that time.”
Requests to stay an extra night or two to recover are usually at the patient’s expense.
‘Cancer was never talked about’
When Pascal was diagnosed with cancer, she realized people don’t know how to talk to her about it and that cancer remains a taboo topic within Indigenous communities.
“There was sort of a stigma behind cancer, you never talked about it,” she said. “And at the same time, with what I was going through, no one understood me.”
She found solace at the Cross Cancer Institute, where cancer patients could have honest and open dialogues about the ups and downs of their treatment journeys.
That inspired her to start the Inuvik Cancer Support Group in 2018.
The group met once a month for sharing circles or other activities such as learning about traditional medicine or smoothie recipes – helpful for those with no appetite for solid food after chemotherapy.
“We had one night where we shared how it was to be diagnosed,” she said. “That was a really heavy session, but it was a really freeing session at the same time for someone to honestly tell us how they felt.”
The Book of Hope
Stories shared in the support group became the foundation of Book of Hope, said Pascal, a book that she wishes she had at the start of her own cancer journey.
She travelled across the territory to gather stories from over two dozen cancer survivors, whose stories shed light on the unique realities of facing cancer in the North.
“The stories are really enlightening,” said Allice Legat, a contributor and longtime northerner who moved from Alberta in 1986. “It’s going to give people more hope and awareness of how to support people with cancer.”
Legat was diagnosed with stage-four lung cancer in 2018 and has lived with it since. She signed up for a clinical trial through the Canada Cancer Trials Group in Kingston, Ontario, which she said helped stabilize her cancer.
“They were cautious about putting me on the clinical trial because their image of Yellowknife as being the frontier, and maybe I couldn’t get help,” said Legat.
“I explained that we have a hospital with doctors and emergency services,” she said. “But in the communities, on the other hand, they don’t have that kind of support.”
That can mean fewer options for patients in smaller, more remote communities, where even travelling to Yellowknife can be a major burden.
“Lots of people aren’t coming for their treatment because they have to leave their kids,” said Legat. “So people were having to make choices to be with their families or go for treatment. It’s horrendously horrible.”
Rueben Unka of Fort Resolution, another contributor who also had lung cancer, hopes the book encourages people to get checked early.
“When I had my issues with my lungs, there was another lady who had the same issues; she let it go for a year, and she’s not with us now,” said Unka.
He said he didn’t have much trouble with medical travel, and his recovery felt quick and “it didn’t feel like a fight”.
“Cancer helped me, it straightened my life right out,” he said. “I’m very grateful that I was given this chance to restart.”
Everyone experiences cancer differently, and Pascal hopes each reader can find something that resonates in Book of Hope.
The book was completed in collaboration with Dene author Katłįà (Catherine) Lafferty, author and researcher Sara Komarnisky. It was officially released on Tuesday and is available for purchase online and at the Yellowknife Books.
A book launch is planned next month in Yellowknife.
