NET Cancer Awareness Day Proclaimed By Governor Jay Inslee

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?

Zebra 1

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.

“You cannot detect it if you don’t suspect it!”

More awareness is the key. We need your help.


8 thoughts on “NET Cancer Awareness Day Proclaimed By Governor Jay Inslee

    1. Thanks, Xochi! It is amazing to me just how many still say to me how “rare” this is when, if we had the awareness, we would hear our medical professionals begin saying “rarely diagnosed because it is often misdiagnosed.” I hear the medical professionals who do know agree with this, but yet we do not have the mainstream have the knowledge or understanding.

    1. Holly, my objection (and the objection of others in the zebra community) is that this is not taken seriously in most circles, and it is far more common (we believe) than is known because of misdiagnoses for years. When you have 95% of those diagnosed at a stage IV level, but equally as many are misdiagnosed for an average of six years, there is a problem. Early detection is key to effective treatment. Knowledge is key to detection. It’s a simple equation.

      I think that it was clear that I wanted more opportunities for more awareness, with having to beg for it year-after-year. Support from people/society who say that they care, other than a (figurative) pat on the head once in awhile. Unfortunately, there are far too many who are unwilling all the way around in all aspects of life.

  1. Hi Coral! I agree wholeheartedly! Unfortunately my comment got deleted by mistake, so here goes! You are right, that a one-time event is a very simple measure, which will not necessarily give the attention to NET Cancers, that they deserve! I know that when a disease has a large presence in the media, it helps create an atmosphere where people are not only educated, funds are more easily raised for both research and treatment of the any people affected by this deadly disease! We are not wanting to advertise MacDonald’s! We want a wide spotlight shone on an illness that has caused pain, suffering and loss for so many! What is talked about, known about, and shared publicly, could easily change the course of this illness for so many! We only need to think back to the days before antibiotics, or a vaccine for smallpox? Much suffering has been arrested due to those treatments discovered, researched & then employed! So, I hope your Govenor changes their mind, and implements a permanent recognition of this Cancer! What negative effects could result from it? None that I can see! Thank you for your strong advocacy on behalf of so many! Big hugs! J

    1. Jewels…exactly! I hope that we see the day that all cancers are eradicated! Without a willingness to take the bull by the horns for ALL cancers, I don’t think that will happen any time soon, unfortunately. Yet, we cannot give up hope.

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