Pioneering Young Adult Cancer Support: 30 Years of History
January 1, 2015
By: Emily Drake
Whether you have been a part of CancerFightClub for a while or are just learning about us now, you may be unaware that it is a program of Hope & Cope, a non-profit organization that is part of the Jewish General Hospital/McGill University in Montreal, Quebec, Canada. Thirty years ago, Hope & Cope pioneered young adult cancer support by starting the first support group for young adults living with cancer in Montreal. Throughout the years, the program has evolved with the ever-changing needs of the young adult population in order to provide age-appropriate support and services, but the story started 34 years ago.
Sheila Kussner, O.C., O.Q., founded Hope & Cope in 1981. Ms. Kussner is a pediatric cancer survivor who started the organization to provide both hope and ways of coping to people and their families living with cancer. It is recognized nationally and internationally as a model for volunteer-based care because it relies on 460 cancer-experienced volunteers and a professional staff to provide psychosocial support services to cancer patients and their supporters from diagnosis through all stages of illness. We listen without judgment and offer evidence-based programs and services, having published multiple peer-reviewed papers and presented at oncology conferences throughout the world.
The strength of Hope & Cope has always been innovation. Thirty-four years ago, the concept of providing peer support to people living with cancer within a hospital setting was considered revolutionary and by some, risky. Yet we persisted and over time the worth of our organization was proven. From the very beginning to today, we were always ahead of the curve. While we were not necessarily the first to see a need, or even the first to “get it,” we were very often the first to do something about it.
“… I came to Montreal at Sheila Kussner’s request with Bob Fisher who had chronic lymphocytic leukemia and who established the Patient-to-Patient Volunteer Program at Memorial Sloan-Kettering. We met at the Jewish General Hospital, talked fast and enthusiastically for several hours, and then met the first group of extraordinary volunteers and donors of Hope & Cope … You have developed a unique resource in Montreal for patients and their families which is a model for other cities to follow.” – Dr. Jimmie C. Holland, Wayne E. Chapman Chair in Psychiatric Oncology, Department of Psychiatry and Behavioural Sciences, Memorial Sloan-Kettering Cancer Center, New York City
Back in 1985, young adults who were participating in our patient support group told us that they needed a space of their own to connect with each other and discuss relevant age-appropriate things. So, we responded by creating Montreal’s first young adult cancer support group. What started as something relatively simple became a great source of support for patients aged 18-39, where they could discuss issues like infertility, body image and dating.
As the years passed, our services for young adults evolved with the times and the establishment of the JGH Hope & Cope Wellness Centre was a key part of that. In keeping with its history of innovation, Hope & Cope established Quebec’s very first hospital-affiliated Wellness Centre geared toward supporting people living with cancer at all stages of illness, as well as their supporters. The Centre opened in February of 2007 and was officially launched in July of that year. The house is affectionately named Lou’s House, as principal benefactor Joelle Berdugo Adler, and the Berdugo and Adler families, donated the house in honor of her late husband, Lou Adler. The Centre is located one block from the hospital. In addition to the multimodal programming we are able to offer to all adults in this facility, Lou’s House has become the home for our young adult cancer program.
In the 2000’s, the program moved from the support group format to weekly exercise evenings at the Wellness Centre. In 2009, young adults from the Montreal-Ottawa-Toronto-Southern Ontario corridor participated in a weekend retreat to help define their needs and preferences. It was out of these discussions that CancerFightClub.com was born. This interactive website and online community is a go-to site for Canadian young adults living with cancer with frequent visits from people around the world. It features various resources for young adults and their families, a blog, an events calendar and an active social media presence (facebook.com/thecancerfightclubcommunity; @Twitter). All facets of our online program are designed to empower young adults living with cancer and their supporters to live well.
In addition to this resource, it became clear that supporting families locally was vitally important. “What do we tell our children?” is usually one of the first difficult questions parents ask when processing a cancer diagnosis. These parents can now turn to Hope & Cope’s En Famille program. Another first for our city, En Famille offers an informative resource guide with age appropriate suggestions, workshops geared for children of different ages, counseling referrals, high school outreach, a parents’ support group and a meal program for young adults with children under 18 or those who do not have children but need meals while going through treatment.
In 2015, our young adult program now boasts an online public health tool (cancerfightclub.com), a social media presence (Facebook, Twitter, #MAYACC, #AYACSM), dance classes, cooking classes, exercise evenings/personal training programs, general young adult cancer retreats, retreats for young adults living with metastatic and advanced cancer, workshops, community events and café nights. With 30 years of success, we look forward to the new innovative programs we have in development and to celebrating this year with you. Celebrating this success is celebrating the success of a community that came together to support those who needed it, as well as those involved with the young adult cancer movement who have fought and continue to fight for the basic rights and support of young adults living with cancer.
