Sexual self-esteem, medical marijuana and end-of-life care are all topics deemed to be forbidden for patients with colorectal cancer to talk about, even with those closest to them.
But Fight Colorectal Cancer (Fight CRC), a nonprofit organization dedicated to raising the voices of patients, fighters and champions of CRC to push for better polices and support education and awareness, is ceasing the silence of these so-called taboo issues with their new “Taboo-ty” podcast series.
“Taboo-ty” is an educational series featuring discussions from medical experts coupled with patient interviews designed to help listeners cope with common issues and, most importantly, not feel alone.
“We’re really hoping we start to change the conversation and make sure people are talking about topics that aren’t getting a lot of attention, or topics that are more controversial,” says Keavy McAbee, community resource manager of Fight CRC. “We really just want people to open the dialogue with their health care team, with their partner, or even at a larger community level.”
The quarterly podcast is wrapping up their “Sexual Health and Intimacy” series for February — tied into Valentine’s Day — with topics of sexual health and intimacy, marriage and intimacy, sexual self-esteem, and newlyweds and family planning, hosted by Michael Krychman, MD, of the Southern California Center for Sexual Health and Survivorship Medicine. All episodes are archived and can be viewed via iTunes or their website.
McAbee says, “As Dr. Krychman describes in this podcast series, we have to address the ‘conspiracy of silence.’ Patients aren't asking and doctors aren't talking about these important issues. We hope that this podcast brings these issues to light.”
Danielle Burgess, director of communications for Fight CRC and a two-time CRC survivor, hopes that the series will guide listeners to pay it forward and discuss these off-limit issues with other patients and their loved ones.
“I’m hoping this reaches all patients facing colorectal cancer,” says Burgess. “For anybody facing colorectal cancer in a relationship, sexual health is going to come up no matter what.”
“Taboo-ty” is only one component of Fight CRC’s various resources to educate and unite patients. The organization also works to eliminate geographic and ethnic health disparities that exist in the field, ensuring patients have access to information on treatment options, clinical trials, insurance coverage and screening recommendations. They equip and train advocates to share their stories to unite the community to educate the unscreened. They also train research advocates who get involved in the science.
Their “One Million Strong Collection” campaign for 2016, inspired by the 1 million survivors of the disease, kicked off in January and is running through April.
“We want survivors to be proud of their fight,” says Burgess. “We want to give them a platform for their voices to be heard and their stories to be shared.”
The One Million Strong Collection, which uses the social media hashtags #omscollection and #strongarmselfie, is comprised of survivors, caregivers, and loved ones creatively expressing their unique experiences with colorectal cancer through art, music and blogs, to name a few. The collection can be viewed online and select stories will be featured at the One Million Strong Showcase in Nashville, Tennessee.
“I hope that anyone facing this disease will look through the bright colors and the splashes of creativity in this campaign and find some strength to keep going,” Burgess says. “I hope that this campaign reaches those who’ve hit a point where they’re like ‘okay, I want to do something about this. Colorectal cancer came into my life for a reason and I want to help others or make sense of it.’ Our organization and this campaign can be a step into that.”
When Fight CRC isn’t recording podcasts or producing reliable patient resources and uniting survivors through awareness events and social media, they’re also training advocates how to speak up change policy. For example, on March 14-16, they will be at Capitol Hill in Washington, D.C. for their 10th Annual Call On Congress to learn about research and policy issues in the field of CRC and push for changes with members of Congress.
All of these efforts and more are striving to address the inevitable elephant in the room — “this disease that is taking our friends,” says Burgess, who mentions a stage 4 patient advocate, Steven Ring, who passed away from CRC in early February.
“I bring my survivor perspective kind of into all of what we do internally to offer a pulse check into what’s happening in the community and externally,” Burgess says. “When I turn off the computer from my work day, colorectal cancer doesn’t exactly go away for me.”