The Rewarding Work of Being a Volunteer Moderator for an Advanced Cancer Caregiver Support Group
In my Part One article, I wrote about the nonprofit AnCan's Advanced Cancer Caregivers’ Call that I co-moderate. This virtual support group is based on a “peer-to-peer” format.
What does that mean? It means that each of the moderators has direct and real-life experience as a caregiver to an advanced cancer patient. Three of us are cancer widows who cared for our husbands in the year or more before their deaths. If there’s an advanced cancer caregiver challenge you are facing, there’s a good chance one of us has lived it.
AnCan’s co-founder and moderator extraordinaire, Rick Davis, is a prostate cancer survivor and has been a caregiver to many friends with prostate cancer who have not survived.
Why I think peer-to-peer support is best for patients and caregivers
I love the “peer-to-peer” format. Doctors and social workers have their important places in any patient’s experience. But it is often other patients and caregivers who can offer practical tips based on experience.
The peer-to-peer format lends a credibility and authenticity to the group discussions. For all their medical credentials, most providers cannot say to a patient: “I know what you are going through because I have been there.”
The essence of what people want to know about their condition
As Rick told me when I asked why he chose a peer-to-peer format: “Peer advice is the salt of the earth - it is the essence of what most people want to know about their condition,” he explained. “In most instances, peers have little to hide, are free of financial conflict, and eager to share their experience with those coming down the path.”
He continued: “Peers have also learnt the hard way for making bad decisions and they will share that too. Not to say, there are no biases - successful treatment is often reflected in enthusiastic advice, but that's where moderators and navigators play a role in providing balance.”
What happens in a typical meeting?
The caregiver meeting I co-moderate meets twice a month for an hour-and-a-half each time. Participants can join via computer with video or just audio. They can also dial in on the phone.
Some weeks 7 or 8 seriously stressed caregivers join us. Other weeks it’s just one. No matter, we are there and ready to talk about whatever the participants want to talk about.
Does everyone have to talk?
I think this is the universal question and fear surrounding support groups. So I will cut to the chase: no, you don’t have to talk.
If we have new attendees, each of the moderators typically introduces themselves and we each briefly tell our story and our relationship to advanced cancer. We then invite the participants to tell us a little bit about why they are attending and what kind of help they are seeking.
But no one is required to tell their story. It is entirely fine to just listen. The point is to help the participants and sometimes listening to others’ stories is precisely what is helpful.
Volunteer peer moderating is the most satisfying cancer work I've found
I have done a lot of volunteering as a patient advocate since losing my husband to bladder cancer in 2014. I’ve raised money, served on committees, reviewed research proposals, and attended conferences. All of these activities have felt purposeful and important to me. I value the opportunities I’ve had to contribute in these ways.
But there is nothing quite so satisfying for me as speaking directly to advanced cancer patient caregivers at a moment when they need help. I understand where they are because I was also there.
Reminded of how hard it is to be a cancer caregiver
Even if I’m tired, when I finish co-moderating an AnCan call, I feel energized and gratefully reminded of just how hard it is to be a cancer caregiver. I never want to forget how hard it is.
And while I lived it for an intense period in 2013 and 2014, someone else is living it today. And they need to know they are not alone.
The moderators do not get paid for this work. AnCan accepts donations but turns no one away. Rick also helps patients with navigating the healthcare system, again on a need basis, and does not request payment for such help.
Looking for a few good moderators
If you are interested in giving back to others who have experienced the same disease, consider becoming a volunteer moderator for AnCan. Bladder cancer is one group they hope to start. Others (as noted in Part One) include Alzheimer’s disease, Parkinson’s disease, lung cancer, inflammatory bowel disease, and lupus.
If you are well enough and can spare a bit of time each month, I can assure you this is a rewarding way to spend your time. It does take a bit more than just showing up to a call. It’s helpful if you are already connected to other patients who might be interested in joining a call. Such connections could be through social media, advocacy work, or just friendships you’ve struck up. If you work directly with a nonprofit advocacy disease-specific group, that helps too.
If you are interested, contact Rick via AnCan’s online contact form.
How long did you wait before telling others about your diagnosis?