2021; Volume 22, No 5, May
How My Perspective as a Cancer Survivor Shaped CanSupport
By Harmala Gupta
IAHPC Board Member; Founder-President of CanSupport
In 1987, I was diagnosed with Hodgkin’s lymphoma. At the time I was completing a PhD at McGill University in Montreal, Canada. Accompanying me were my husband and three-year-old son. How I wished I were back home, in India! Now I know that it was the right place for me to be at the time. I brought back a perspective that has shaped my journey in supportive care ever since.
Volunteers humanized my care,
counteracted cancer stigma
At Princess Margaret Hospital in Toronto where I was treated, I was struck by the welcoming presence of volunteers, many of whom were cancer survivors. They ran a host of services catering to the needs of patients. Looking back, this was supportive care at its best. It humanized the hospital atmosphere and helped fight stigma in the community.
Children enjoying an outdoor picnic at the home of a CanSupport volunteer. Photo used with permission.
When I returned home to New Delhi I was very keen to replicate this experience, but understood that the challenge was far greater. Cancer was a taboo subject and volunteers were viewed with suspicion. It was also evident that in addition to emotional support, people with cancer needed basic information, access to prostheses, help in procuring expensive drugs, and—most of all—empathy and hope. It was what led me to start a volunteer support group and, six years later, CanSupport. This was a natural progression as I realized that almost 70% came to hospitals with advanced disease and, when treatments failed, had nowhere to turn.
The founding group of CanSupport were volunteers and today, despite the induction of professionals, volunteers continue to play an important supportive role. Besides running day care services, they organize major events like CanSupport’s annual Walk for Life. Their dedication and generosity of spirit permeate the organization in a most pleasing manner.
Peer support group
reignited my courage
Gathering feedback from caregivers is part of the program. Photo used with permission.
When I had cancer, the survivors I met in peer-based support groups in Toronto revived my courage. I realized the enormous value of sharing experiences and venting emotions in a safe place. I also came to appreciate professional counselling. We are perhaps unique in that at CanSupport, the counsellor is considered a core member of the home care team along with the doctor and nurse. Those who staff our telephone helpline are also trained to offer emotional support to every caller.
I personally know and appreciate the value of attention to detail to ensure quality of life. While under treatment, every care was taken to respond to my slightest discomfort. This care extended beyond the physical to practical, psychosocial, and spiritual matters: it also embraced my family. No matter how busy she was, my doctor returned my calls before the end of the day. At CanSupport, we insist that our patients and their families must feel listened to, supported, and secure. Our home care teams are available 24/7.
From the beginning, we have emphasized quality. We constantly seek feedback from patients and their caregivers. We were perhaps amongst the first to do an external evaluation of our home care program. More recently, a nurse from the UK helped us more fully understand the needs of our nurses.
My doctor asked:
what are your goals?
I consider shared decision-making and respect for the other as key professional attributes. This is not easy in a society where most believe the doctor knows best (including the doctor!) and women struggle to be heard. When my treating physician asked me what my life goals were and what treatments would suit me best, I realized how empowering this was. It transformed me from a passive victim into an active participant. Respect, empathy, and equal partnerships define the CanSupport ethos. We have seen amazing breakthroughs born of persistence and unconditional love and acceptance.
The CanSupport annual review meeting is an open invitation to all our partners, particularly patients and their families, to come and contribute to planning for the future. The intention is best captured by the phrase: “Nothing About Us Without Us.” I strongly believe that if we are guided by those we purport to look after, it will keep us honest. Otherwise, we run the risk of becoming yet another organization serving its own interests.
Read Harmala Gupta’s bio here.