Saturday, March 2, 2013

Digging Out Of The Melanoma Underground

As I write, I've been literally home-bound all week because of laryngitis and fever courtesy of infected sinuses. To say I'm ready to make a break and escape would be a gross understatement! Because I still can't quite make the break I would like to make, I'll write about making another kind of break and see if I can't, in the process, help some people escape from the Melanoma Underground! Sounds ominous and sinister, huh? It is.

I logged onto Facebook this morning and went to Melanoma Prayer Center, which I write and admin and there was this perfectly lovely and uplifting post on the timeline a woman had left. I blush just thinking about it, but there's one part I want to share here:

"I am a member of a surviving cancer support group. I dearly love everyone there. The fellowship, support and bible studies are truly uplifting & inspiring (the last one was on Hope). But I have never met another person living with melanoma. Now that I have found your site, I no longer feel so isolated and all alone like the only person on earth with the trials & fears that we face.

When I tell anyone outside of my support group that I have been battling melanoma I get a flipid "it's only skin cancer" response, so I just smile & say no more. Am I the only person who gets that? Or is that a common response?....Thank you for bringing me out of isolation."

Here is but a part of my response, but it's the part that inspired this post:

"You're not alone. Far from it. There will be over 76,000 melanoma diagnoses in the USA alone this year, so add them to all the previous years diagnoses, and there are millions of people, including family members, affected by melanoma. All of us, including those millions yet to find us, have been given that reaction and it probably serves to drive us underground and hide as if we have a "lesser" cancer when in fact, as you know, we have the most unpredictable and vicious. That's one reason why I want, so desperately, to refer to melanoma as "melanoma" and remove it from the "skin cancer" category...it's so much more. We've got to come out of isolation and realize we aren't alone and we need each other. The world needs us. Really."

Now...for a refresher post on skin cancer and melanoma. There are others. Do a blog site search. I'm moving on.

I can't do a thing in the world about people's ignorance about melanoma except keep putting stuff out there trying to educate and hope someone pays attention. I'm waging a lonely war to get melanoma removed from the skin cancer category and I have to accept that as well and keep plugging away until those particular forces grow.

What I CAN do something about, though, is this blasted Melanoma Underground that the ignorance of others is driving people into. I cannot prevent ignorant and hurtful remarks. I cannot remove the stinger from them. But I can be a Who that Horton's toting on a small flower and holler, "We're Here! We're Here!" I can encourage the voices of my fellow melanoma road travelers to join in the shout. And many already ARE shouting at the top of their lungs.

There are literally millions of people and families on the face of this earth affected by melanoma. MILLIONS! That's a huge population! There's almost a billion people on Facebook and that number grows everyday. There ARE billions of people, worldwide, online who, therefore, have access to the melanoma sites and blogs. There HAS to be a huge number of these online people and Facebook users who are dealing with melanoma. There HAS to be!

Where are they though? My guess? Underground. Isolated. Thinking they're all alone in this. They tell someone they have "melanoma," get rolled eyes and an "oh. skin cancer?", and that's all it takes for them to realize no one gets it or cares or understands or will even try to so why bother. People do not know that melanoma is so far from "skin cancer" that it's not even funny and that it's the most unpredictable and vicious cancer there is. People don't know about the tumors and that it can spread, very quickly at any stage, into the brain, lungs, liver, bone, blood, any organ it chooses. And those spreads ARE NOT "brain cancer" or "lung cancer"...it's melanoma that has spread and is killing.

Given the statistics, every town on the face of this earth probably has at least one person/family dealing with this or someone who knows someone.

Please...when you hear of someone with melanoma, show understanding and compassion even if you don't know beans about melanoma and point them to the online melanoma community.

Please, if you or someone in your family or a friend has melanoma, any stage, find me and others on Facebook. Even if you do not have a Facebook account and don't think you want one...open one for support with this disease if for no other reason. Connect with us through our blogs. I have a growing list of us bloggers.

Just because ignorance and arrogance on the part of others may have driven you into the depths of the Melanoma Underground, doesn't mean you have to stay there.

Dig out. I'm handing you the shovel, but you've got to use it.

There's a whole, growing community waiting to embrace you.

You'll be glad you did.

charis