Being a cancer patient in the North often means a lot of time away from family and friends, high travel costs and feelings of isolation.
A group of northerners is trying to help residents who find themselves in that situation with the Book of Hope, a collection of stories shared by northern cancer survivors.
Agnes Pascal was diagnosed with cancer in 2015. After finishing treatment in 2017, she started facilitating cancer support group in Inuvik.
“I was invited to a one-time event for a cancer sharing circle in Inuvik, and it really opened my eyes to how many people are experiencing cancer here, which I didn’t know,” Pascal told Cabin Radio.
“So many other areas were brought up that made me reflect on my own experience and my own journey. Like, if I had lost my battle, who would have been there for my family? Who would have been there to support my children? And in this circle, I was able to share my own experiences with people who were also going through them.”
The sharing circle inspired Pascal to create a regular group that now meets monthly. During one of those meetings, she started to realize the sheer number of different stories and experiences that result when cancer touches lives.
That led to the Book of Hope’s creation, in which Pascal partnered with northern author Katłįà Lafferty, Aurora College research chair Sara Komarnisky and funding body Hotıì ts’eeda.
The book, which will be released in spring 2024, features stories from cancer survivors for an audience of current cancer patients, family members and friends, and will be distributed to all NWT communities.
“It’s going to tell people that they’re not alone,” said Pascal.
“Not everyone has support in the Northwest Territories when they’re experiencing cancer. But it can also share how to help someone and support someone fighting cancer, without overstepping their boundaries.”
‘I felt so lost’
Pascal hopes the book will serve as a resource for government officials and healthcare professionals to begin the process of decolonizing healthcare.
Many of its stories are told by residents of small communities and issues like the cost of travel, or being away from families for months at a time, play a large role in survivors’ narratives.
“For someone in the Northwest Territories who is having to go through cancer treatments, most have to travel to Edmonton and be away from their daily life,” said Pascal.
“Not only that, but you have to suffer from cancer and the side effects of treatments while you’re so far away from home, and even while you’re travelling.”
Pascal recalls being told while undergoing chemotherapy in Yellowknife that she would be on the plane back to Inuvik the following day, regardless of the side effects. Now, she thinks having a reference like the Book of Hope at the time would have made her feel less isolated and scared.
“It was a really scary time. I felt so lost,” she said.
“To pick up a book during my journey and have it give me that connection, knowing there’s support out there and people to answer questions would have changed my perspective.
“One of my biggest concerns was losing my hair to chemo. I did have some people who I met that shared the same fear, and they supported me while I lost my hair. If I hadn’t had that, I think it would have been a different outcome for me.”
The book will also tell stories from doctors, nurses and researchers in the cancer treatment field, as well as the story of the late David Malcolm, who was a member of Inuvik’s cancer support group.
Sibet Biscaye, a cancer survivor and the NWT government’s director of gender equity, also appears in the book.
“Being diagnosed with cancer can be a frightening experience, but it can also be a journey of hope,” Biscaye tells prospective readers in a quote shared with Cabin Radio by Lafferty.
“It’s important not to give up hope. Having also lost family members to cancer, I know it can be difficult to keep the faith, but we have to remember that we all have our own journey – one filled with hope is the one I prefer to walk.
“I think this book does a wonderful job of encouraging those dealing with cancer and their families not to give up hope. If sharing my story helps others in any way, I am grateful.”
Pascal says she still wants to hear from survivors around the territory who want to share their stories (you can reach her by email).
“Someone being told that they have cancer? It’s a life-changing moment,” she said.
“Just remember that you are not alone. There’s a lot of support out there for people who have been diagnosed with cancer, their family members, caregivers and friends.
“Hopefully, picking up the Book of Hope will offer that support.”