Tuesday, May 29, 2012

We are few and far between

You can't turn around without running in to women who have had breast cancer. They wear pink, they have ribbons, they have walks, and cities and towns are painted pink. They can bond. They have retreats and get togethers. The month of October no longer leads up to Halloween, it has been pinkified. They get a whole month. If I don't know dozens of women who have had breast cancer, I know hundreds. There are lots of us.

But then there are few and far between long term thyroid cancer people. If there were 10,000 cases a year in the 1970's and early 1980s, how many are there left from them? A few weeks ago, I posted on a thyroid cancer message board asking to connect with others who had lived with it a long time. People who were five and six years out from treatment replied. Is cancer supposed to impair your definition of 'long term'? Definitely it shouldn't. Five and six years is not a long time. Long time is decades. Five years is the stupid little criteria they use in clinical trials to measure outcomes.

Back on the message board, I clarified a few days later and said I was looking to connect with people who were decades out from treatment. One person replied at 15 years out, another pushing 20. Finally a woman from the farthest part of the country from me replied over the weekend and said she is nearly 40 years out asking to connect. I have already sent her a message.

If you have a 'popular' disease like breast cancer with its walks, awareness, fundraisers, blah, blah, blah, it may be very difficult to realize the difference with someone who has a 'rare' disease. Has anyone ever been to a thyroid cancer fundraiser, walk or other awareness event? Probably not. They are just not as common because the disease just isn't as common.

There are other long term cancer people out there. I know others who are 25-30 or more years out from other types of cancer but they had the more popular kinds of cancer. We are the people who had cancer when it was the big C. We proved the big C wrong, by living through it. We may be few and far between but we are still here.

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