Time to give a shout out and some much deserved recognition to Karen Chelcun and the rest of the crew at No Stomach for Cancer. Karen has recently been recognized by The Massachusetts General Hospital Cancer Center as part of The One Hundred, as in people and organizations who have made a significant contribution in the fight against cancer.
I admire Karen and her family in their effort to raise awareness for stomach cancer and become a source of information for both HDGC and CDH1, which although so rare, has managed to unite hundreds of people around the world in an effort to educate in the prevention, diagnosis and treatment for people like me who face this disease.
I had thought that my own family, after having lost so many and having discovered this genetic mutation so long ago should have been able to spearhead some kind of monumental effort, but we can't even decide on which night to go see the play at the theatre down the road or agree on a good time to have Thanksgiving dinner, so honestly, how could we have created a network of medical professionals, patients and caregivers the way they have?
Check it out!
http://www.theonehundred.org/honorees/view/no-stomach-for-cancer/
I also recently discovered, via the No Stomach For Cancer website, a series of videos on YouTube concerning CDH1 as it affects members of the Maori people of New Zealand. If you are not aware, the stomach cancer gene was first discovered there by a team of researchers led by Dr. Parry Guilford,who is pretty much my favorite person in the whole wide world that I am not related to. Just a note if you do click the link to see the video(s), they are in both English and Maori, so if you don't understand what is being said, just wait, you will eventually!
http://www.youtube.com/watch?v=E6HlRxSXRCU&feature=youtube_gdata_player
Post Script EDIT: hahahaha I just opened an envelope that came in the mail the other day. I ignored it at first because I didn't recognize the return address. But it turns out to be the records I requested from the hospital that I didn't already have concerning my stay there, most specifically the nurses' notes. It's hilarious. Aside from the fact most of them have terrible handwriting that I can't decipher at a cursory glance, some of the notes are awesome.
"Pleasant and cooperative" O RLY?
"NG tube d/c'd by MD this am" Oh yeah! I know what that means! I remember it well! She pulled that awful vacuum tube out of my nose. Awesome!
"Denies need for pain meds" What was I thinking?
"J-tube clogged"
"J-tube clogged"
"J-tube clogged"
"J-tube still clogged"
"Patient refusing Tube Feed at this time due to discomfort/gas" ...and of course the fact that the tube is CLOGGED and she doesn't want further surgery to unclog it!
"Frustrated by lack of communication between doctors."
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