Until now, people with cancer were often forced to face their disease alone
That six-letter word needs only to be spoken aloud,
and otherwise-reasonable people visibly recoil. Faces
blanch, palms sweat; conversations halt and friendships
Until now, people with cancer were often forced to face their disease alone, isolated by society's fear and loathing of "the Big C." Family members sometimes cut ties with the cancer patient, or lob criticism. ("If you had only taken care of yourself....")
People diagnosed with cancer usually want to talk with others who have the same type of malignancy -- but how are patients to find each other, when no one wants to talk about cancer?
This is the Internet's greatest contribution to humanity, as I see it
brings news so good for cancer patients
that I believe the centuries-old stigma against this
common disease may finally give way. The good news:
cancer patients are flocking to Internet mail lists that
act as support groups and information exchanges.
Depressing fare? Not at all.
Cancer patients in Cyberspace arm themselves with medical literature in order to actively participate in their physicians' treatment plans. Internauts with cancer bolster each other, share hopeful test results and successful follow-ups, and even trade wacky jokes.
By participating in the many seasons of an online cancer mail list, any subscriber can see that cancer patients now have the power to heal themselves emotionally, spiritually and -- hopefully -- physically. The number of long-time cancer survivors on the 'Net sends a powerful message of hope.
Fellow travelers in the Internet cancer mail lists include others like myself, who do not have cancer: patients' family members and friends, physicians and other health professionals, activists, others with a genuine interest in the topic...and the inevitable "lurkers" whose connections to the subject are unknown.
The walls have tumbled. People with cancer are finding each other in Cyberspace; this is the Internet's greatest contribution to humanity, as I see it.
"I'm so grateful I found you," a woman exclaimed in her first message to the ovarian-cancer list the other day. That grateful woman's sentiments are repeated almost daily by others posting to the same list, for ovarian cancer is one of those cancers suffering from stigma-upon-stigma.
People quickly discover they were not the only ones to suffer
is the exchange of person-to-person
tips about medical literature that's hot. Even a
physician, whose profession requires that she read
medical journals, cannot possibly read them all. The body
of medical literature has burgeoned beyond any one human
being's lifetime reading capabilities.
Uh-oh. Does this mean that your physician and mine do not, uh, well...know everything about what's wrong with us? Yes, that is exactly what it means.
People joining the Internet's ovarian-cancer list quickly discover they were not the only ones to suffer from late diagnosis, for example. Raising one's level of skepticism can be a healthful development, and I sense this sort of transformation every day on the ovarian- cancer list.
Talk about transformations: I remember a man whose mother had ovarian cancer; he came to the ovarian-cancer list in a typical state of confusion, because his mother's doctor had not answered the family's questions. Within weeks, this man whipped through library searches, developed a list of astute questions, met with the doctor several times, and inspired his mother to seek second and third opinions. The mother wisely recruited a new physician of the pertinent speciality to ovarian cancer -- gynecologic oncology. (This is a tricky term, because it sounds like the word gynecology -- but the meaning is different; the difference is significant.)
It can improve the skills she needs to make crucial health decisions
and very active list for all kinds of cancer,
called CANCER-L, provides a whirlwind of resources for
subscribers. For example,
the list has periodically carried messages by and for
patients who seek to coordinate the Western-style medical
treatments prescribed by their physicians with
"alternative" treatments. (A safe working definition of
"alternative" cancer treatment: anything not sanctioned
by the American Cancer Society, the self-appointed
arbiter in the United States.) Such treatments range from
substances some physicians regard as harmless, all the
way to potions that might be deadly.
A trend: Many people with cancer seek to supplement their prescribed treatment with "alternatives," according to books and recent news reports. A dialogue about the subject is valuable, no matter which side you take.
Physicians who take the time to answer questions from the CANCER-L crowd (and from other lists as well) perform an invaluable service. Though informal, their comments often function as a second opinion. The fortunate questioner armed with a physician's Internet reply can improve the skills she needs to make crucial health decisions.
The "information-seeking patient" is now recognized in the medical literature as one of several "types." An information-seeker wants to participate as a partner with her physician in her treatment. I see signs that more physicians than in the past actually like dealing with an informed patient. Where are the signs? On the Internet cancer lists, and in correspondence I receive because I publish a newsletter on ovarian cancer.
Shared laughter is another of the outstanding contributions
mail lists can be safe havens in which
persons affected by cancer may vent feelings. A
subscriber to the ovarian-cancer list, for example, said
recently that she was FED UP! Her own sister repeatedly
tells her that she got ovarian cancer BECAUSE she is
"sedentary." She thinks her sister has a "control"
PROBLEM. (A bit of Internet-style shouting in capital letters is well-
understood on the cancer lists.)
Other listmembers thought the sister had a problem, too. A lively intellectual discussion of the sister's PROBLEM ensued. Subscribers bristled at the too-familiar hint of rejection by a family member. "Scared she's going to get this disease, too," someone posted. "Stay away from her!" someone else advised. And another listmember weighed in with a tale of her own two sisters, "The wicked witch of the West, and the Good Witch from the East." What did it all mean? Loving support for a fellow subscriber. And a common resolve to reject "blame-the-victim" slurs.
Shared laughter is another of the outstanding contributions of the Internet cancer lists. No sick jokes, these: Internauts with a gift for storytelling spin yarns from their own experiences. Each cancer list seems to have a few geniuses able to turn a jarring encounter with the much-disliked U.S. "health-care system" into a side-splitting tale.
Some hilarious stories only tangentially relate to cancer. And one members of a list to which I used to subscribe cracked me up every day with his Internet handle, "The Bagel Lancer." Yet another member of that same list collected subscribers' votes for funniest movies available on video. It is a brilliant collection for anyone, cancer or no.
If I could speak to my four close relatives who died of ovarian cancer before the personal computer era, I would say: "Come back to the future, for one day. You had to be hidden from the neighbors because you had cancer. But things are just starting to turn around. Now, see this funny keyboard...."
Ceil Sinnex is a journalist who publishes Ovarian Plus: Gynecologic Cancer Prevention News, a quarterly newsletter whose mission to to press for reduced ovarian-cancer mortality through public education and political awareness.
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