During the three days of ThyCa `98, I cried a lot. Most of the time I was laughing. Occasionally I was furious. I wasn't the only one riding an emotional roller coaster. Many of the 70 survivors attending the world's first conference for thyroid cancer survivors were overwhelmed. It's understandable. For most, it was the first time they had met another survivor. For some, it was the first time they had even talked with another survivor. For all of us, it was an opportunity to watch the beginning of a movement that promises to change the lives of survivors around the world.
ThyCa `98 was the first conference for thyroid cancer survivors to be held anywhere. Ever.
Isolation is perhaps the toughest part of living with thyroid cancer. It is not one of the popular cancers, like breast, lung or prostate; consequently, there are no support and outreach services for us. Because our disease demands lifelong testing to make sure the cancer has not recurred, we can't ignore it. And living without a thyroid presents challenges that only another survivor can understand. The goal of those of us who organized the conference is to eventually create a worldwide network of survivors helping survivors. ThyCa `98 was the first step.
The memories of the conference is a patchwork of individual stories: The parents of the 12-year-old survivor wanting to find other families with a young survivor; the woman who had her surgery 38 years before and had never met another survivor; the young woman who came alone because her husband, who has thyroid cancer, wouldn't attend; the truck driver who stopped on his way home from work to get information for his niece who was diagnosed with thyroid cancer the week before; the survivor who had given up on life and whispered to me on the last day: "I've gotten more out of this conference than anyone. It has changed my life."
Not all the conference was catharsis. Much of it was nuts and bolts planning. By the end of the conference, volunteers made commitments to form local support groups in their communities. Thanks to our webmaster, Betty Solbjor, we now have a web page, the first ever to be solely devoted to thyroid cancer survivors' issues. The address is www.thyca.org and we hope to begin building the information available at the site in November of 1998.
In addition to the support group I started in Lawrence, MA, in December 1996, we now have groups developing in Albany, Boston, Charlotte, Chicago, New York City, Phoenix, Southern California, Toronto and Washington, DC. By January 1999, anyone will be able to get the time and place of the meeting nearest to them at our ThyCa web site.
Many survivors, however, do not live in urban areas with enough population to sustain a local support group. To reach as many people as possible, Gail Gundling of Arizona is organizing the ThyCa Outreach Network. This worldwide group of volunteers will be available to go and meet with anyone who needs to
talk with another survivor before their first surgery or radiation.
Perhaps the most important result of ThyCa `98 was the organization of a steering committee that is taking steps to incorporate our far flung community that exists now only because of the Internet as a national, not-for-profit survivors' association. Any survivor or physician who wants to serve on a committee or medical advisory board should check our web page for directions on how to get involved. Our goal is to have the first formal members' meeting at next year's conference. And that's the best news: There will be future conferences.
It took a handful of volunteers two years to organize ThyCa `98, and going into this year's conference, we knew we could only have a meeting every year if enough volunteers stepped up and offered to help. They did. Local steering committees are now planning ThyCa `99, which will be held again in Massachusetts, ThyCa 2000 in Phoenix, AZ, and ThyCa 2001 in Chicago.
I doubt that I will ever have another weekend as extraordinary at ThyCa `98. It was a gift to watch the birth of a network that will link survivors of thyroid cancer around the Earth. If you didn't make it this year, come to Massachusetts next year. ThyCa `99 will be even better.