Online Illness Support from Peer Patients and Caregivers Resonates with Those Suffering

When my husband Ahmad had metastatic bladder cancer, I was very limited in how often and for how long I could leave home. He was too sick and too groggy from pain relievers to be left alone for long. This made it really challenging to attend in-person support groups.

Not everyone can attend support groups

Knowing that support groups were out there, but that I was unable to attend, left me feeling even more isolated. It frustrated me that I was a caregiver to a very sick bladder cancer patient – and greatly in need of emotional support – but yet the system of in-person support groups really didn’t accommodate my situation. It seemed like if anyone needed support, it was people in my situation.

I can’t be the only one with this problem - is there a solution?

But I wasn’t sure what the solution was. I finally found it a couple of years after I needed it.

In late 2016 (about 2 years after my husband’s death) a mutual friend connected me to Rick Davis, a prostate cancer survivor and co-founder of the nonprofit 501(c)(3) called AnCan.

When we talked, Rick explained to me that AnCan had hosted a variety of “peer to peer” online support groups for prostate cancer patients for several years. Groups focused on different categories of patients such as those with advanced disease or those with earlier-stage disease. Rick said that it was common for spouses/significant others to also attend the meetings. But that they had been asking about the possibility of meeting just for them.

And for that reason, he was interested in starting a group for advanced cancer caregivers. It would be for caregivers of any advanced cancer, not just prostate cancer.

And because I had significant experience caring for my spouse during the last 11 months of his life with advanced bladder cancer, I had been suggested to Rick as a possible moderator. And so began my story with AnCan. It has been one of the most rewarding activities I’ve ever participated in.

AnCan started with a small group of prostate cancer patients

Co-founded by 3 prostate cancer patients including Rick, AnCan began hosting “virtual peer support groups” in 2011 via conference call. Rick told me recently that by 2016, they held six prostate cancer groups per month and decided to establish a nonprofit. One of the co-founders, Rob Barniskis, died in 2018 from his prostate cancer. Another, John Teisberg, stepped back from AnCan in 2018 to focus on his own organization, The Reluctant Brotherhood.

And so today, AnCan is run by Rick as well as a nonprofit board and a robust roster of volunteers with various technical expertise as well as volunteer moderators who want to give back and support others currently on the path they themselves already lived.

When I asked Rick about why they chose to create virtual support groups, he said: “Many people are compromised - geographically, physically or socially, and cannot attend a physical group. I realized that we can bring the support group to them, rather than them traveling to the support group.”

I couldn’t have said it better myself.

AnCan might have a group for you...or maybe you could start one

Today, AnCan hosts 22 meetings a month for seven different conditions including but not limited to prostate cancer, men’s breast cancer, ovarian cancer, blood cancers, multiple sclerosis, and sarcoidosis.

Rick tells me that AnCan would like to start a bladder cancer patient support group and is seeking interested volunteer moderators. It does not require any prior experience. AnCan will train you and hold your hand along the way. It does require an interest in helping other patients on the path you have already traveled.

AnCan is also interested in starting virtual groups for Alzheimer’s disease, Parkinson’s disease, lung cancer, inflammatory bowel disease, and lupus.

I have been co-moderating the caregivers’ group for about 3 years

We have built a roster of four co-moderators (including Rick) for the caregivers’ group. Those of us who can attend a given meeting do. Sometimes it’s all of us, sometimes it’s one of us. I was on an extended hiatus after my mother died last year. But at least one of us is always there as a peer, ready to listen.

In Part Two, I will tell you more about my experience as a peer moderator. I will also try to nudge you into volunteering as one, too!

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