Requirements for Survivor's Club Membership: Living Through Cancer
When Dorothy Bright found out she had uterine cancer, she told the doctor, “You’re kidding!”
“I wish I was,” he deadpanned.
She was immediately scheduled for a complete hysterectomy. She was 54 and, as the physician put it, “wouldn’t need all that stuff anymore anyway.”
Jokes might seem out of place in light of being diagnosed with a one of a group of diseases that kill more than 1500 people in the U.S. each day. The dark humor, however, is just a part of “cancer culture."
Survivor groups are bigger and more powerful than ever, sharing rituals, role models, and even a language all their own.
Cancer survivors do not fit a single demographic. They are rich and poor, male and female, democrat and republican, religious and atheist. While they are not necessarily close in proximity, many interact daily thanks to the Internet. They are brought together not because of a common interest, but instead by a common enemy.
The enemy is cancer—in any of its multitude of forms. Many of them, including Dorothy Bright, have battled this foe and come out victorious. Some wear ribbons and bracelets bearing the color that signifies which fight they won—pink for breast cancer, black for melanoma. Many of these people probably would never have spoken to each other were it not for their shared ordeal.
An online poster—who wishes only to be identified as “midnightmoon”—talks about finding support among other survivors that he wasn’t getting from his peers. He was diagnosed with cancer at age 21.
“I more or less lost the majority of my friends because they had never dealt with anything so serious and didn’t know how to handle it,” he says. “So, sometimes, its nice to have someone already know what page I am on without having to explain everything or without feeling like a downer for talking about it.”
So, there is a way of finding an identity among other survivors. While cancer has undoubtedly become a big part of their life stories, it does not define them. They are no longer patients. They are victors—and no one understands what they have been through like their fellow survivors. They even have a secret way of communicating with each other.
Survivor Speak: Their Own Language
A visit to any cancer survivor group meeting quickly reveals that these people have developed a language all their own. This is perhaps most visible in the online environment.
Survivor chat rooms and message boards are filled with abbreviations and acronyms, some virtually undecipherable to an outsider. “What was your Dx?” asks an anonymous poster in an online forum. Dx? In survivor-speak, Dx stands for diagnosis, and each type of cancer has its own acronym. BC = breast cancer, PC = prostate cancer, and so on.
Then, there are the procedural terminologies: Tx’s are treatments, SNB stands for sentinel node biopsy, and Rads means radiation treatment.
“NED is my favorite dance partner,” says Jill Steick, who has been cancer-free for nearly three years. NED stands for no evidence of disease.
The signature black humor can be found in cancer survivor and support groups across the board. One man in an online group for family members of cancer survivors chats candidly about getting accustomed to his wife’s “foobs” (also known as foobies). Foobs? Fake boobs, of course—in reference to the saline breast implants some patients opt to have inserted after undergoing a Mast or Dbl Mast (mastectomy or double mastectomy, respectively).
This is also what's known as Recon, short for reconstruction. Many times, a BC patient will choose to have a Mast over a Lump (lumpectomy, or removing the tumor only and leaving all remaining breast tissue intact) because of the risk of Mets. The dreaded “Mets” has nothing to do with baseball or going to the museum. It stands for metastasis: when cancer spreads from the original site to other parts of the body.
Using nicknames and abbreviations for cancer terminology lightens a heavy conversation. It’s easier to say UC than uterine cancer—that’s the kind Dorothy Bright had—not to mention the term’s proper name. Nothing brings a conversation down like having to fit “adenocarcinoma of endometrium” into the dialogue.
More significant to the group’s identity than the unique terminology are the traditions, rituals, and legendary figures they associate themselves with.
The Events and the Icons
There are thousands of events that have become traditions for survivor groups. Annual gatherings like the Susan G. Komen Race for the Cure have become household names in the United States. Not only do these events bring attention to the group’s cause, but they are a way to communicate their values to others.
Some people participate to raise awareness of the need for more cancer research. Others participate to honor the memory of a loved one who lost their battle with cancer. Each event is a reunion of sorts, a celebration. An anniversary with NED.
Many include performances by musicians or other entertainers. The races and relays are themselves performances of a kind. Celebrities like Lance Armstrong are champions of some such events, and often speak at them. Armstrong—and his incredible story of survival against all odds - has become a legend of sorts among survivors.
Armstrong’s Livestrong Foundation provides support to cancer sufferers and offers a message of strength, solidarity, and encouragement. “At the Lance Armstrong Foundation, we unite people to fight cancer believing that unity is strength, knowledge is power and attitude is everything.”
If there is a person of truly legendary reverence among survivors, it is Nancy Brinker. Brinker is the organizer of Race for the Cure and founder of the Susan G. Komen for the Cure Foundation. In 1980, Brinker lost her sister, Susan Komen, to breast cancer. During her grueling three-year battle, Susan was more concerned with other women suffering from the disease than with her own ordeal.
She hoped for better screening and earlier diagnosis. She imagined cheerful, comfortable oncology wards in hospitals. Her mission was to bring strength and hope to women everywhere who have been afflicted with breast cancer. Susan lost her fight, but Nancy vowed to dedicate her life to making her sister’s dream a reality.
Today, the Susan G. Komen Race for the Cure events draw some 1.5 million participants each year and have raised millions of dollars for cancer studies. As proof of her iconic status, an award in Brinker’s name is given each year to an outstanding pioneer in breast cancer research. Her work further unites survivors in solidarity against inaction. The traditions that she and others have created confirm the identity of the survivor groups—informed, empowered, and hopeful.
A Legacy of Survival
As long as cancer continues to afflict people, the survivor groups will go on. They will continue reach out to others who have shared their plight. They will speak boldly and with a wicked brand of humor all their own to remind them that they are the boss – not cancer.
Many will return to participate in the traditions created by their group. Most will share their personal lore—their tale of survival—with someone afraid and unsure and at the beginning of their own journey. They will continue to support each other and share hope.
Says Dorothy Bright, “I think the support you have at a time like that is what helps you get through it.”