Tuesday, May 29, 2012

Let's Work Together And Channel Some Anger And Frustration In Melanoma World

I've learned when I write or post something that actually draws several comments that I'm seeing the very tip of the iceberg, which means there's a lot more people who are angry and frustrated with what we see and live with in Melanoma World. There seem to be, from what I'm seeing, two main sources, and those are the Tanning Industry and the Medical Establishment. While Insurance is another source of woes, that isn't in the top two.

There's a huge pool of anger and frustration at the Tanning Industry and the lies they sell. People think they are buying health and vitamin D and many buy skin cancer, melanoma, and often death. Many are young adults with young children and they're angry they may not see them grow up because they believed and bought lies. These angry, frustrated people in Melanoma World want to bring the whole Tanning Industry down.

There's another huge pool of anger and frustration at the Medical Establishment. Doctors, of all kinds, who are not informed at all about melanoma. These particular doctors seem quite willing to play Russian Roulette with their patients' lives. They refuse to remove and biopsy troubling spots which later, SURPRISE!, turn out to be melanoma that has often spread. They refuse to order scans. If they are not melanoma specialists, they keep their mouths shut about their patients being referred to melanoma specialist oncologists and surgical oncologists and often don't know what the heck they're doing when it comes to treatment. There is also anger and frustration at our places of treatment when they ignore Melanoma Awareness Month and pay attention to other cancers and we are off their radar. These angry, frustrated people in Melanoma World want doctors, of all kinds, informed. They want them to set aside their own pride and act in their patients' best interests. And they want melanoma to be acknowledged and not ignored in favor of the "better publicized and funded" cancers.

Well, in two recent posts I provoked anger and frustration against the Tanning Industry and against the Medical Establishment, but it was anger and frustration that was already there.  And I know I'm just seeing the tip of the iceberg when I read the comments left at each.  It's neither right nor fair to stir up intense emotions and call people to action without providing possible courses of action they can take. We need to be able to channel that anger and frustration.

For those who are angry and frustrated with the Tanning Industry, I suggest getting in touch with Aim At Melanoma.  They are leading the way in the USA in legislation against the Tanning Industry and can also help you get involved in other countries if you're not in the USA. If getting involved with legislation isn't your cup of tea, think about sharing your story and the dangers of tanning beds, using facts and your pictures, at local schools and various youth groups. Write articles for local newspapers or letters to the editor. Write a blog. Look into your heart. When you think about getting involved in the fight against the Tanning Industry, what's your first thought before you start to tell yourself all the reasons why you cannot do this? That may be where you need to focus your anger and frustration. There is more to fighting the Tanning Industry than legislation, especially since legislation isn't tackling the commercial aspect that sells to private homes. Currently, legislation is only focusing on businesses like tanning salons and mainly on denying access to minors at these businesses.

For those angry and frustrated with the Medical Establishment, I suggest contacting Melanoma Research Foundation. Part of their advocacy program is offering, "educational programs for patients and physicians about the prevention, diagnosis and treatment of melanoma and maintains an active presence at professional conferences, such as the American Society of Clinical Oncology (ASCO) and the American Association of Dermatology (AAD) annual meetings." Find out what you can do to help with those efforts. Bounce your own ideas off them. Look at what frustrates and angers you the most. What can YOU do, where you are, to help doctors and other people get the information, resources, etc, they need?

For all who live with melanoma, look at your anger, frustration, and even your fears and focus them in positive ways that will make a difference. Just like the comments I've gotten are the tip of the iceberg, so too, these suggestions are the tip of another iceberg. Maybe these ideas will help. Scour the pages at Aim At Melanoma and at Melanoma Research Foundation for other advocacy information and contact information. If there are other organizations you'd like to work with, contact them. Contact the medical facility you receive treatment at, they may welcome a volunteer. Take the first step and they will work with you. You know they are there...they don't know YOU are there, wanting to help, and they don't know what your areas of interests are.

A word to the people at Aim At Melanoma and the Melanoma Research Foundation and the other melanoma specific organizations: there is a lot of anger and frustration in our community. There are a lot of people who want to make a difference but don't know how. Please consider how you might be able to step up your efforts to reach as many as possible. The people are there! People want walks and events in their areas but don't know how to go about organizing them. They want to know when events of all kinds that relate to melanoma will be held and where. One thing we are finding is that our doctors and facilities are not getting information out to us about seminars, etc. Do they know of these events themselves? Are there ways you can get the info into the hands of those of us who'll likely attend? Not every patient is online. Not every patient that's online is on Facebook. Please look at how you currently get event info out and who you get it out to and see if there are ways to reach more of us and reach us more effectively...and reach our doctors as well. Thank you!

We're all in this together! Those of us with melanoma, our families, organizations, the medical community. We need to figure out better ways to work together. We're ALL on the same team!

What ignites your passion and fire in our common fight against melanoma? We all have a place at the table. Pull up a chair. It takes every single one of us.

Hopefully this has gotten some wheels turning and brains thinking and dreams kicking into gear.

If so, then I am grateful!