Head and Neck Cancer Support SocietyOf the patients, by the patients, for the patients.
About our society
The Head and Neck Cancer Support Society is the first of its kind in Canada. It was formed on the principle – “Of the patients, by the patients and for the patients.”
In 2015, the Institute for Reconstructive Sciences in Medicine (iRSM) conducted an initiative to address their Waitlist process. Part of this process involved seeking patient feedback. A key component of that feedback noted that support for Head and Neck Cancer patients would benefit from improvement.
The Head and Neck Cancer Support Society is the result of sustained efforts of Dr. Suresh Nayar and a small but dedicated group of head and neck cancer patients who began collaboration in 2016.
In July 2018, the Head and Neck Cancer Support Society officially received its registered Society status.
Our Board Members
Kimberly was diagnosed with head and neck cancer in 2014 and at that time, was employed as a business analyst/planner. After receiving both surgery and radiation cancer treatments, she participated in numerous clinical trials and studies. During her recovery, she attended a local head and neck cancer support group, and now serves as a patient mentor. She is also a member of a patient advisory group with Institute for Reconstructive Science and Medicine (iRSM) and this has included a research priority setting initiative with head and neck cancer patients. Kimberly has found participating in these varied initiatives has given her a sense of purpose and an outlet to take her mind off of the devastating day-to-day reality of living with head and neck cancer.
At almost 15 years since diagnosis, Debbie is a head and neck cancer veteran. After months of sore throat symptoms, Debbie was diagnosed with Stage 3 base of tongue cancer. Four complicated surgeries, radiation and chemotherapy followed. With humble goals of being able to answer the phone, as well as order and enjoy a “double double” at her favourite coffee shop, she received months of speech and swallowing therapy to achieve these seemingly normal daily tasks. Occupational and physical therapy helped restore her physical stamina and function. The support of her family was an essential part of her emotional recovery. When returning to her long career in a health profession was no longer possible, Debbie embarked on a new career as a volunteer at the local cancer hospital with a particular interest in helping others with head and neck cancer. Today, Debbie tries to make every day count in her new life. Being a member of the HNCSS is rewarding and Debbie hopes the collective energy of head and neck cancer patients will add to head and neck cancer care by positively collaborating with health experts in this area.
In 2015, Adam was diagnosed with tongue cancer, resulting in 2 surgeries, the first at the U of A Hospital and the second at the Royal Alexandra Hospital. After receiving 30 sessions of radiation, Adam participated in speech and swallowing therapies, a rehabilitative exercise program and had acupuncture to help restore his salivary glands. Adam has completed both the TARGET and ACE exercise programs and is strong advocate of the benefits of exercise in the recovery of head and neck cancer patients. Adam is a patient advisor with the Cancer Strategic Clinical Network (SCN) and a founding member of the Head and Neck Cancer Support Society.
Leslie-Lou was diagnosed with tongue cancer in 2014. Her treatment has involved surgery, radiation, and chemotherapy. She joined the “see me, hear me, heal me” project as a partner-collaborator in 2015, and in 2016 she participated with health care providers and researchers in an Alberta-based head and neck cancer research priority setting project. She lives and heals in Alberta.
Ken was diagnosed with squamous cell carcinoma of the left base of the tongue, after months of dealing with an innocent looking canker sore on his tongue. As a busy business development executive for a large manufacturing company, Ken had little time for health issues, let alone head and neck cancer requiring complicated surgeries with follow up treatments of radiation and chemotherapy. During his recovery, he put full effort into “regaining what cancer had taken away”, especially his ability to speak and eat, receiving speech, nutrition, swallowing and physical therapies. He also attended head and neck support groups, finding the interaction with other patients insightful and so encouraging on how they had adapted to their “new normal”. Eventually, Ken attempted to return to work but cancer related limitations ultimately lead to an early retirement. Since then, Ken has become involved in various projects in cancer rehabilitation, research and fund raising. Perceiving a need during his own recovery, Ken became particularly motivated to contribute to patient education and advocacy, thus his involvement with HNCSS. Speaking personally, Ken notes that “cancer opened my eyes to what is important” and that family is #1. He describes his wife as “my rock” who has been there during his challenging recovery.
- March – April – iRSM Waitlist initiative Focus Group Task Force meetings.
- April – Waitlist initiative Focus Group Summary Report which identified need for a support group.
- November – first meeting called by Dr Suresh Nayar and formation of iRSM Patient Advisory Team
- Monthly meetings to discuss way forward in establishing patient support group
- Ping Mason-Lai, SPOR patient engagement platform facilitator brought in to help facilitate understanding of what support services is required.
- Patient survey carried out to ascertain need for support and data collected.
- Patient survey completed and data compiled.
- Applied for recognition as a registered society in the province of Alberta
- Board of Directors appointed
- July – Received confirmation as a registered society in Alberta