Discussion Board Forums Announcements Wanted: Survivor Stories

Viewing 13 posts - 16 through 28 (of 28 total)
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  • #38078
    kristin
    Participant

    Thank you for your post, Marion. I think that’s a really good idea.

    I was having a very rough day when I posted (my second drain has now gown haywire) and was feeling like an official “failure” because I now have disease progression. It was my sweetie of a husband who started pointing out all the things I’ve done since I was diagnosed and had the recurrence.

    I think a CC success story is anyone who FEELS like a success story, and I would just love to hear all the stories of people who feel that way!

    Thanks!

    Kristin

    #38077
    kristin
    Participant

    Thank you for your post, Marion. I think that’s a really good idea.

    I was having a very rough day when I posted (my second drain has now gown haywire) and was feeling like an official “failure” because I now have disease progression. It was my sweetie of a husband who started pointing out all the things I’ve done since I was diagnosed and had the recurrence.

    I think a CC success story is anyone who FEELS like a success story, and I would just love to hear all the stories of people who feel that way!

    Thanks!

    Kristin

    #38076
    marions
    Moderator

    Kristin……point well taken and much appreciated. Originally, my thought was to encourge those people to come forward who are afraid to offend those in different stages of the disease. I had numerous discussions with CC patients who do not want to visit the site and share their stories simply, for this reason. But, as you say, success is measured in different ways. Therefore, should we use a timeline such as: 1 year survivor, 2 year, etc.?
    Best wishes,
    Marion

    #38075
    kathyb
    Member

    Wow Kristin! You are an amazing success story. Even more than I realized :-)

    #38074
    dmeek
    Participant

    Kristin – awesome!! That’s a great story! I wish you continued success in your journey!!

    #38073
    kristin
    Participant

    MY CC SUCCESS STORY

    OK, so now I have a growing tumor that squashed my bile duct, and a malfunctioning bile bag hanging off my side.

    But in the six years since I was diagnosed, I have:

    traveled to Europe three times and to Asia once

    driven and camped the US coast-to-coast on back roads, twice

    written two novels, a memoir, and part of a nonfiction book, and had a literary agent submit them to major publishers

    written textbooks (my profession) that are used by hundreds of thousands of students in Asia and Latin America to learn English as a foreign language, and understand other people better

    started making visual art and showed it in public shows

    deepened my spiritual life enormously, and found my way back home to church

    made many new dear and wonderful friends

    got my first-ever dog, who delights me every day

    bought my first-ever house and planted my first-ever garden

    and learned to be a better and kinder wife, sister, daughter, granddaughter, daughter-in-law, and friend.

    To heck with the bile bag and tumor, I think that’s pretty darn successful.

    #38072
    dmeek
    Participant

    Hi Rick, I met you and the others of this foundation at the symposium last week. I’ll be glad to share my survivor story, I’d planned to do that sometime when I got back from my trip. As you know, I’m a 6-year survivor of cholangiocarcinoma, with no recurrence or ongoing problems. I’ll plan to draft my story and send to you via email. Thanks – Dale

    #38071
    kathyb
    Member

    Kristin, you are a success story to me. And a great inspiration! I don’t think there’s anybody with cc that doesn’t have bumps in the road.

    The bumps people have are helping/preparing others to ride through the bumps without giving up.

    #38070
    kristin
    Participant

    Oh well. I guess I’ve just been demoted from the ranks of success stories. :(

    #38069
    marions
    Moderator

    Kristin….I believe that this cancer should be classified a chronic disease for those members who, as you say: are alive and kicking.
    In this particular instance we are looking for people who do not display any visible recurrence or, those who have an inactive disease. Although, currently we have success stories posted however, I believe that they get lost in the threads. We could display survivor stories in a more prominent place and rotate each after a certain period of time. The reasons are threefold:
    1. It will encourage patients to share with us their stories of success.
    2. It will be in a prominent place.
    3. It allows people to share their stories without the fear of offending those in different stages of this disease.
    What do you think?
    As always, best wishes,
    Marion

    #38068
    kristin
    Participant

    What do you mean exactly by “survivor”? Cancer-free, or just still alive and kicking?

    As far as I’m concerned, every patient who posts on these boards is an amazing survivor story!

    Kristin

    #38067
    lainy
    Participant

    Done, Rick. A project in mind?

    #3545
    rick
    Keymaster

    Hey there, over the last few weeks I’ve heard some incredible cholangiocarcinoma survivor stories.

    If you’re a cholangiocarcinoma survivor or if you know one, can you shoot me an email? rick@cholangiocarcinoma.org

    Thanks!

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