The Melanoma Support Group (we are against it), in the South San Francisco Bay Area, presently has about 10 to 18 humans who might show up at any of our gatherings. Many of our members are involved in a number of therapies and some are not doing any therapies at this time. We have been wondering if there are any other melanoma-specific groups like ours. Please let us know if you have such a group. If not, we encourage you to consider forming a similar group in your own area. (Read "Who We Are" below if you want to learn about ours.)
If you want to get in touch, you can contact Jack "Meat and Potatoes" Cormode, who is cynical and has a wry sense of humor. ("Wry" is what you call humor when no one laughs at your jokes.) Jack just happens to have a wife who can put together a Home Page, which makes him look like a Silicon Valley genius.
1. STAY OUT OF THE SUN
Sun = Melanoma
Of course, you will go out in the sun - so wear a broad-brimmed hat, use plenty of sunscreen (PF 25 is just fine) and limit your time in the sun.
2. TAKE CARE OF YOURSELF
Eat right, stay fit.
A major armament in your personal defense is your immune system. Take care of it and it will take care of you. Be moderate in your habits and zealous in your desire to live.
Part of taking care of yourself is reducing stress in your life. Find natural ways to relieve stress and put it in perspective. Drugs are not a natural way.
3 FIND OUT
Ask, Check it out.
Ask doctors and other qualified health professionals (nurses know a lot). Do research - our group benefits from having new members because they consistently bring the latest information and new perspectives.
4. DO SOMETHING
Find out, Think, Decide.
Find out what you can, think about it, then decide on a course of action. Seeing a dermatologist regularly, going through a valid therapy program, joining a support group, meditating - all of these are helpful to one degree or another.
5. YOU AIN'T DONE IN YET
NOT a death sentence.
There are far more survivors than those who lose the fight. Even if the odds are against you, there is still a chance. For most of you, the odds are in your favor, and you can help make them even better.
The National Cancer Institute regularly updates its information on melanoma and other forms of cancer. Call them at 1-800-4-CANCER
(1-800-422-6237). They also have the PDQ Search Service at pdqsearch@icicc.nci.nih.gov . Both the 800 number and the 'Net address can give their postal addresses.
The American Academy of Dermatology, Inc., 1567 Maple Avenue, Evanston, IL 60201 has some materials, including a bookmark with photographic examples of the Danger Signs. Sorry, we don't know the cost or policies on providing such materials.
Jack Cormode
13085 Franklin Avenue
Mountain View, CA 94040-3922
e-mail: jarmode@aol.com
In 1980, a group of people who had been diagnosed with melanoma cancer began meeting periodically in Santa Clara County, California, located in the South San Francisco Bay Area. Called together by Mike Nyhan, this group has been meeting ever since, usually at six or seven week intervals, in each other's homes. Loosely structured (an understatement), the members share information and experiences, and offer support to each other. It is a group that responds with flexibility (no set agenda) to whatever the participants want it to be. There are laughter, tears, serious and not so serious discussions, and more questions than answers, but everyone has an opinion, and useful information. The host provides refreshments.
The group began with melanoma survivors and an occasional spouse or significant other. Now almost all of our newer members are accompanied by someone. They have added a new dimension, a depth of understanding and care, that provides an amount of support that is greater than their numbers. Consideration of the "caretakers" getting together has come up. There is some basis for this. An unscientific survey of the group shows that some melanoma patients tend to be more accepting of doctors' diagnoses and prognoses than those who are so directly concerned with the patients' welfare. Dealing with (managing) "Melanomaniacs" is not an easy task.
Although we give the impression that we are average, middle of the road Americans, possessing the virtues and values and frailties that are typical of humanity, we have something that sets us apart. That something is that we not only have a personal "relationship" with melanoma, but we go a little bit beyond the normal therapies, trying to get that extra little edge in dealing with and defeating this particular form of cancer.
At this time, melanoma does not have a cure. Early detection and surgical removal is the best treatment and the best hope of long term survival. Therapies are almost always experimental. Melanoma can be virulent, sneaky (lying hidden for years), takes many forms (it is definitely not limited to black moles), and still has so little known about it. This is the downside.
But having melanoma is NOT a death sentence. As there is greater awareness of it, there is earlier treatment and that means a greater chance for survival. Though there is no cure, several of the newer high-tech therapies are making a difference. There is more information available, and information relieves fear and leads to effective action.
The one thing the "old-timers" of the Support Group can offer is themselves as long-term survivors. We have lost many members to melanoma. But far more of our membership has left in good health, having gotten over the hump and gotten on with their lives. You might almost say they become bored with it all, or at least can now consider it as only a nuisance. This is a good thing. Once having had melanoma, you must always be vigilant, but you don't have to let it rule and ruin your life. After the initial shock, panic and/or fear have subsided, then sit yourself down and think of how you are going to deal with having melanoma. Every one of us in the group deals a bit differently with our problem, but the one thing we have in common is that we deal with it. We take charge of our illness. None of us can understand why so many people choose to avoid dealing with the subject, either completely or by doing no more than occasional check-ups with a doctor. That is their privilege - but we don't understand it. Studies have shown that those who receive placebos in a therapy test program live longer than those who do nothing. It is the simple act of will that makes a difference.
Created Feb. 29, 1996 by J. Cormode and J. Jarmann
(c) 1996, J. Cormode