I run LTS, an Internet discussion group for long-term survivors (that's what LTS means) of cancer. Every day, at least one new member joins our group, or someone sends me a private posting in search of help in a personal journey with cancer survival.
Most initial correspondence begins with some variation of the sentiment "I'm so glad I've found you. I've been alone for so long and no one understands." My response to every writer is "You are no longer alone. Someone on this list, someone in our community, will understand. Someone will have similar experiences."
When the group started in 1998, most members were Hodgkin disease survivors like me, many treated 20 or 30 years ago. Our group now includes survivors of all types of cancer, some treated as long ago as 1954, others who finished treatment as recently as a month ago, and some who continue in treatment for chronic forms of cancer. What we share is a wish to live life to the fullest. Sometimes that requires help from others like us.
Our discussions most frequently revolve around the topics described in our mission statement: finding and establishing good follow-up care; social issues of concern to survivors, including insurance, disability benefits, and employment and education discrimination; and the psychological and emotional effects of being a long-term survivor. Perhaps most importantly, LTS provides an opportunity for survivors to openly and freely discuss health problems related to treatment.
We cancer survivors are often told to put the past behind us and to get on with our lives, and to a great extent we do. But it's impossible to ignore the past totally when it so profoundly affects the present. There are physical manifestations, from "chemo brain" (a change in cognitive ability during and after chemotherapy) to loss of body parts. There are social manifestations, like discrimination at work and difficulties in getting or maintaining good health insurance. There are psychological and emotional manifestations, from chronic anxiety to depression. Not every survivor encounters these problems, but enough of us do. When we attempt to talk about them with family and health care workers, we are often met with reluctance.
If you have access to a computer, you can be part of this extensive worldwide community. There is no fee for joining, and we always welcome new members. The larger we grow, the more knowledgeable we become, and the more able we are to advocate better care for all survivors. All communication takes place through e-mail, which allows for extended discussions. Our group has always included members of health care professions, including nurses, physicians, and others interested in helping survivors achieve the highest quality of life possible.
We are part of the Association of Cancer Online Resources (ACOR), which hosts more than 100 discussion groups related to cancer. The URL for ACOR is http://www.acor.org. To access our subscription page, either click Mailing Lists on ACOR's home page and then click Survivorship Issues (we are the LT-Survivors group), or go directly to http://listserv.acor.org/SCRIPTS/WAACOR.EXE?SUBED1=lt-survivors&A=1 (registration is required).