A number of survivors and caregivers attended a Bladder Cancer Advocacy Network Regional Forum held in Chapel Hill in May of 2010 and organized the support group following the meeting. “We decided to start a support group and first met in July of 2010 with the help of Drs. Deborah Bradley at Duke and Matt Nielsen at UNC.”
David explains, “People want to talk to survivors who may be able to help them. Questions such as 'Where are you in your journey? Do you still have your bladder? How did it feel to go through the treatments?’ Speaking with someone who has faced the same issues and understands is enormously helpful.”
There was no support group when Langham was diagnosed over two years ago with bladder cancer and had a recurrence a year and a half later. Now he coordinates the group by managing the website and listserv, sending out announcements and responding to phone calls from patients and families.
The group meets in person on the second Tuesday of each month, but group members make themselves available to talk with new patients and caregivers on the phone or in person anytime someone needs to talk.
The monthly meetings vary in format. Sometimes they have a speaker, sometimes just the group members talk among themselves, and sometimes the group splits into survivors and caregivers discussions.
Liz Sherwood, RN, MS, ANP-C, Coordinator for Survivorship and Oncology Integrative Medicine Programs at UNC Lineberger and the N.C. Cancer Hospital, assists the group by providing a meeting place, helping with scheduling of speakers and attending each meeting. "She is instrumental in the support of this group,” David says.
The group plans to ‘go on the road’ by holding meetings in several different NC locations this year. “We want to reach out to communities where there is a need,” David explains.
For more information about the group, visit: trianglebcs.org.