I have experienced the healing the power of belonging to a peer to peer support group. After my radiation and chemo treatment for tongue cancer my speech language pathologist suggested I join a group for cancer patients with swallowing issues and I am so glad that I took advantage of the opportunity.
I was already writing a blog about my tongue cancer journey for friends and family, so I knew how important it was to talk about my experiences and get feedback from those who know and care. The blog had healing power for me and so did the support group.
I really appreciated relating my story to people who were experiencing the same things I was, but I think listening to other patient and survivors’ stories was even more powerful. We followed and supported each other’s progress week after week.
I participated in this group for about a year before I moved to a smaller city. There is no support group where I live on Vancouver Island. However, as an author promoting my tongue cancer experience book, No Quit in Me, I have had the privilege of being invited to participate in meetings with a variety of head and neck cancer support groups. With each group I been touched by the stories and the level of sharing and caring that the members deliver for each other.
Support groups work. The Alcoholics’ Anonymous model of sharing your story and hearing others’ stories has healing power. Head and neck cancer support groups are each slightly different and guided by their own principles but essentially members get together on a regular basis to share their experiences, inspire, learn from and emotionally support each other.
What the participants have in common is that we are the survivors of cancer and the treatments required to remove cancer: surgery, radiation or chemotherapy. We are all dealing with harsh, damaging, painful, frustrating, confusing, conflicting, unpredictable experiences and feelings.
No one’s experiences are the same, but they are all variations on pain management, difficulties with swallowing, dry mouth, speech impairment, food choices, weight loss, memory loss, brain fog, sleep issues, fatigue and quickly changing symptoms. Each person’s story is often a litany of issues occurring on many levels at the same time. The frustrations are sometimes overwhelming, but the same person at the next week’s meeting may well be remarking on their ability to overcome everything and meet their challenges.
Hearing other patient’s stories can be inspirational. Knowing what someone else has endured gives you faith that you can do the same. And you feel you are not alone in your frustrations.
It is comforting to be talking to people who can relate to what you are going through. You feel heard and understood. You also feel safe talking about your very personal experiences.
The meetings are also an opportunity to ask for advice from those who are ahead of you in their healing journey and to be offering advice to those who began their treatments after you. Everyone seems to be willing to share what has worked for them.
Clearly these groups support patient recovery and adaptation. Clinics that treat head and neck cancer patients seem to have discovered the healing power of support groups and are providing trained social workers or psychologists to facilitate them.
The Head and Neck Cancer Support Society was recently founded by members and supporters of a local head and neck cancer support group in Edmonton Alberta. This Society is championing peer to peer support groups and I support their efforts. Join them at www.head-way.org.
I also encourage every head and neck cancer patient and survivor to join a group.
If you are a patient or survivor and do not have a group yet; find one. You will be in good company. If there isn’t one where you live maybe the clinic where you were treated at has an online support group service. Ask the team that cares for you.
John Kuby
Author of “No Quit in Me: My wild ride with tongue cancer” www.noquitinme.ca