Survivors, mountains and happy dances
Where can you find bladder cancer survivors, the Great Smoky Mountains, and the Happy Dance Song in one place? At the North Carolina Bladder Cancer Awareness Picnic, of course. The annual picnic, now in its fifth year, takes place at The Swag, a country in on a 5,000 foot high mountaintop in Waynesville.
The meeting was organized by Waynesville resident Nancy Parrish who chose the beautiful location for bladder cancer survivors and caregivers to meet others who have been on the same journey.
The picnic took place on Sept. 21, the beginning of fall in western North Carolina. A few of the leaves were starting to change color. We heard that the peak season is October when all the leaves have turned and the local roads are bumper to bumper. I attended on behalf of the Bladder Cancer Advocacy Network (BCAN), where I am the program coordinator for research and education, but also to be there with my mom, who is a bladder cancer survivor. She had spoken on the phone with some of the other people attending the picnic and “met” some through the BCAN online community run by Inspire and was looking forward to meeting them in person. I was also looking forward to meeting all of the bladder cancer survivors and caregivers.
On Friday morning, my mom and I arrived at Ronald Reagan National Airport, across the Potomac River from Washington, DC. We wondered what would happen when my mom went through the security checkpoint, but it was fine. A little while later we arrived in sunny Greenville, SC and drove about an hour and a half northwest to Waynesville, NC, stopping in Asheville for lunch. That night we joined some of the bladder cancer survivors and friends for dinner while another group ventured into nearby Cataloochee Valley in Great Smoky National Park to see the elk rutting at dusk.
On Saturday morning we had a delicious breakfast at the Windover Inn, a Bed & Breakfast in Waynesville. Then we drove to the Swag. Once you drive through the gate, it’s a steep, winding dirt road, full of switchbacks. We proceeded slowly through the drizzle and mist in our rented Toyota Camry.
In the Appalachian Mountains a “swag” is a dip between two mountain peaks not deep enough to be called a gap or pass. The country inn shares its name with one swag in the Great Smoky Mountains. The Swag was built from logs mainly from huge tulip poplar trees as a second home for the Matthews Family in 1971, became a weekend church retreat, and finally a mountaintop inn.
When we reached the top and found our way to the main lodge, we were greeted by Karen Godfrey and welcomed by picnic organizer and host Nancy Parrish and host and MC Pat Boumansour. Due to the drizzle, everyone got cozy in the main room of the log built building complete with a chandelier composed of antlers and taxidermy bears, deer, opossums and turkeys on the walls, all of which were formerly roadkill. There were 56 people who attended the picnic, many from North Carolina but also people from many other states across the United States, including Illinois, Virginia, Georgia, South Carolina, Massachusetts, New York, Maryland, and Washington, DC. There were survivors from many different backgrounds including retirees, an internal medicine physician, a kindergarten teacher, school nurse, wound, ostomy and continence nurse, consultants, experts in information technology. Everyone received a booklet, put together by Caryn Summers, with a short biography and picture of each participant.
Nancy and Pat welcomed everyone and talked about the theme of this year’s picnic “Celebrating the Angels in Our Lives.” All of the survivors then introduced themselves, shared their stories and had a chance to recognize the people who have helped them through their journey by giving them an angel. Nancy also took pictures of survivors with her bear that is sent to many survivors along with a photo album where they add their picture and story. It was really moving to hear each survivor’s story and how their loved ones, BCAN and the online community helped them through their bladder cancer journey. Since people don’t talk about bladder cancer much, it was refreshing to hear survivors speaking so openly about it. Next everyone joined hands for a prayer. Then Pete Nevins started off the Happy Dance Song on his guitar, with everyone joining in for the chorus. He added a new verse from last year including:
And those initials may sound foreign, but they will tell: Will be BCG, NEO, IP, or IC that makes us well?
He promises to add one new verse each year. Afterwards we were treated to a scrumptious indoor picnic at the Swag, including hamburgers, bison burgers, hot dogs, buttermilk fried chicken, many Southern desserts like homemade fudge and chocolate pecan pie.
At the end of lunch, Karen Godfrey spoke about all the work that BCAN has been doing in funding research for preventing bladder cancer, improving treatment and finding a cure. She also talked about her experience as a patient advocate at the Bladder Cancer Think Tank. Following lunch, there were group meetings for those who still have their bladders, survivors with different urinary diversions and caregivers. We all reconvened in the evening at Nancy’s lovely house that overlooks the mountains for more songs, dancing, desserts and fun. Many people were already looking forward to next year’s picnic. Nancy said, “You might think a group like this would be negative, but being here is inspiring and we’re all upbeat.” I want to thank Nancy for putting together such a wonderful picnic where bladder cancer survivors and caregivers had the incredible opportunity to share their stories and talk to other people going through a similar situation.
Vanessa Hoffman is the program coordinator for research and education of the Bladder Cancer Advocacy Network.