I received an email with an attachment today from the organizer of the Pacific Northwest Carcinoid Cancer/Neuroendocrine Support Group. It was a “Proclamation” certificate signed by Governor Jay Inslee of WA, declaring November 10, 2014 as:
NET Cancer Awareness Day.
Though I am glad that awareness for this cancer is receiving some thought, it only covers one day in 2014.
MUST we always go through this every year just to have our voices heard at a government level? How about a declaration of the day, period, Governor Inslee? Now THAT would be taking a stand that is substantive, rather than symbolic.
Some would say that I should just be grateful.
I’m sorry, but I am tired of symbolism over substance. I reject the notion that we should be “happy with what we can get.”
At what point do any of us get involved doing something because it’s the right thing to do, not simply a symbolic gesture? What does it take to get other cancers (and their ribbons) as recognized as some are now, and get money thrown at finding a cure as is done with other cancers and causes?
Granted, it starts with a day. But we, who have been diagnosed with this silent killer, have been using that day of November 10th for many years, and the many days we live with this disease, to garner support and awareness.
I know I’m being selfish, Governor Jay Inslee, because this is now about me and the others like me who live with this disease that few know much about, even many medical professionals.
And thank you, once again, for the one day this year you have given to us here in the State of Washington next month. But, I implore you…we need the same day, a week, a month…every year.
Are you wearing a zebra ribbon? Are you talking about this? When will you come to an education day/information meeting and learn about it? When will you come to talk to us, hear our stories of decades of misdiagnoses?
And whom might you know that has been diagnosed with many other ailments that present themselves with the same things that we zebras have experienced? Which one or two or more of these friends and family will one day be diagnosed with Stage IV NETs/Carcinoid Cancer?
Yes, Stage IV.
You see, lack of awareness can lead to complacency from so many. Or some being told it is “in our heads” years before. The stories of so many of us who might have been diagnosed and treated at a Stage I level, if someone would have been aware or had listened.