Saturday, February 12, 2011

Internet Forums and Their Value

I'm talking disease forums through places like the Melanoma Research Foundation, not those other ones. When you get the diagnosis you are swimming in a sea of uncertainty and confusion. The doctors aren't available 24x7 to answer your questions.  They are especially not available when you are up at 4:00am worrying. There is a place you can go on the internet to read about other people's experiences with the same disease. And learn about treatment protocols and side effects and side effect management. You can learn an awful lot about clinical trials, and what new drugs are in the hopper. You have to be careful about which forums you get on and get involved in to ask questions and offer your own experience - I took some time before I found one where the people seemed pretty sharp and credible. It's helped enormously, I found out about a clinical trial happening in our own backyard that may be applicable and for which Meagan has already had a blood draw to see if she will be a match. But mostly what I've learned from these forums is something else.

What I've learned is the value of a fighting spirit and the determination that courses through the veins of these folks on the forums. They offer in unblinking detail the challenges they face and the manner in which they have faced them and it's very inspirational and supporting. What I really love is the forum encourages each participant to use a favorite quote at the bottom of each post. So here are a sampling of the quotes of people with Stage 4 melanoma, many of whom have been living with this disease for many many years.

You gotta keep going. What am I going to do quit? That's not an option, you gotta keep on keeping on. Life is a garden dig it? You gotta make it work for you. You never give up man, that's my philosophy.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

It's about kickin' Melanoma's butt!

Meh. Get on with it.

"Nothing works and nothing works and then - something works." 

melanoma is a word...not a sentence

Live Laugh Love
Nothing is worth more than this day!

Every day I wake up is a gift!

Stay strong
You are not lost
Come on and fix your eyes ahead
There's a new dawn to light our day, our day
You've gotta stay strong
You and I run
For the prize that lies ahead
We've come too far to lose our way, our way

Cancer Sucks
Shit Happens
Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though.
You can't fix stupid.
never, never, never, never give up
~~Winston Churchill
The sun is still shining and my heart is still beating...
maybe things aren't so bad.
I have 3: Life is what happens when you've made other plans
When life gets tough, the tough go to "Happy Hour"
It's the little things in life that make living so grand!
NOT this girl and NOT today!
Above all, love one another.
Be the change you want to see in the world.
Never take no for an answer.
Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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