For all the new ones to this site-OR if you want to make a difference...

Options
K_ann1015
K_ann1015 Member Posts: 500
edited March 2014 in Esophageal Cancer #1
Hi all my csn friends,

I love you all, but am sad by the losses we have had recently and that we actually get new people frequently---that reminds that this disease is not as rare as some think! I want to share this educational site again---it has great info and would be good to share with family and friends.

http://ecan.convio.net/site/PageServer?pagename=HomeSarbarnes

They have some very important goals: Prevent EC from occurring by educating the public and Medical professionals on prevention & treatment of reflux and other precursors to EC. They are also trying to increase awareness of this cancer so that more research can be funded specifically to ESOPHAGEAL Cancer!

Also--notice all the "pink" ribbons around---well..esophageal cancer has a PERIWINKLE ribbon and I have ordered car magnets for family and friends online for $1.50 each. I don't want a famous person to suffer with EC, but it seems that is how certain cancers get more funding for research. I think we all want to make a difference--so we can educate everyone we know..

Kim

Comments

  • chrisk06
    chrisk06 Member Posts: 110
    #2
    Options
    Periwinkle Pride!
    Kim

    I am right there with ya! I wear my periwinkle bracelet all the time. It is unfortunate that it would probably take someone famous to get people to be more aware. Steves nephews have been told they need to be checked and they act as if it will not happen to them. Steve, his Dad, and brother all passed away from this ugly disease. I just wish they would screen people for EC like they do other diseases. But no, they dont, so by the time most people realize they have EC its too late for some. I try to spread the word, but I guess we cant get to everyone.


    Chris
  • unclaw2002
    unclaw2002 Member Posts: 599
    #3
    Options
    chrisk06 said:

    Periwinkle Pride!
    Kim

    I am right there with ya! I wear my periwinkle bracelet all the time. It is unfortunate that it would probably take someone famous to get people to be more aware. Steves nephews have been told they need to be checked and they act as if it will not happen to them. Steve, his Dad, and brother all passed away from this ugly disease. I just wish they would screen people for EC like they do other diseases. But no, they dont, so by the time most people realize they have EC its too late for some. I try to spread the word, but I guess we cant get to everyone.


    Chris

    Starfish
    Chris,

    Mahatma Ghandi once said "Whatever you do will be insignificant, but it is very important that you do it." The first time I heard that I was confused but as I thought about it the profound nature of the statement was amazing. As caretakers, cancer patients, cancer survivors, and family who have lost loved ones to this terrible cancer it is important that we take every opportunity to share our stories.

    So even if people dismiss us we should keep on spreading the word, even if is as simple as wearing your periwinkle bracelet so someone asks you what is that for, or having a conversation with someone if they tell us that they have heartburn all the time, or talk about having trouble swallowing. Those are insignificant acts that may one day save a life and you will never know.

    Don't give up on the newphews. Gently remind them and see if you can get other family members to help you in this effort. And if you can't speak with them perhaps you can send them a memory card on the anniversary of Steve's death with a message that Steve loved them and wouldn't want them to suffer like he did and they should have a screen done.

    Thinking about trying to do what seems impossible I remembered the STARFISH STORY - it is one of my favorites and you have probably seen it before but I thought I would share it.


    "While walking along a beach, an elderly gentleman saw someone in the distance leaning down, picking something up and throwing it into the ocean.

    As he got closer, he noticed that the figure was that of a young man, picking up starfish one by one and tossing each one gently back into the water.

    He came closer still and called out, "Good morning! May I ask what it is that you are doing?"

    The young man paused, looked up, and replied "Throwing starfish into the ocean."

    The old man smiled, and said, "I must ask, then, why are you throwing starfish into the ocean?"

    To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

    Upon hearing this, the elderly observer commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

    The young man listened politely. Then he bent down, picked up another starfish, threw it into the back into the ocean past the breaking waves and said, "It made a difference for that one.""
  • chrisk06
    chrisk06 Member Posts: 110
    #4
    Options
    unclaw2002 said:

    Starfish
    Chris,

    Mahatma Ghandi once said "Whatever you do will be insignificant, but it is very important that you do it." The first time I heard that I was confused but as I thought about it the profound nature of the statement was amazing. As caretakers, cancer patients, cancer survivors, and family who have lost loved ones to this terrible cancer it is important that we take every opportunity to share our stories.

    So even if people dismiss us we should keep on spreading the word, even if is as simple as wearing your periwinkle bracelet so someone asks you what is that for, or having a conversation with someone if they tell us that they have heartburn all the time, or talk about having trouble swallowing. Those are insignificant acts that may one day save a life and you will never know.

    Don't give up on the newphews. Gently remind them and see if you can get other family members to help you in this effort. And if you can't speak with them perhaps you can send them a memory card on the anniversary of Steve's death with a message that Steve loved them and wouldn't want them to suffer like he did and they should have a screen done.

    Thinking about trying to do what seems impossible I remembered the STARFISH STORY - it is one of my favorites and you have probably seen it before but I thought I would share it.


    "While walking along a beach, an elderly gentleman saw someone in the distance leaning down, picking something up and throwing it into the ocean.

    As he got closer, he noticed that the figure was that of a young man, picking up starfish one by one and tossing each one gently back into the water.

    He came closer still and called out, "Good morning! May I ask what it is that you are doing?"

    The young man paused, looked up, and replied "Throwing starfish into the ocean."

    The old man smiled, and said, "I must ask, then, why are you throwing starfish into the ocean?"

    To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

    Upon hearing this, the elderly observer commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

    The young man listened politely. Then he bent down, picked up another starfish, threw it into the back into the ocean past the breaking waves and said, "It made a difference for that one.""

    I had never heard that
    I had never heard that story. I love it. I have walked up to total strangers that I have overheard say that they have had this really bad heartburn that never seems to get better, and told them about EC. My friends laugh at me, but gotta spread the word. Steves nephews are young and think...not me...well I hope that with enough nagging, they will get screened. The memory card is a great idea. Steve's birthday is in June. I think I will do that then.

    Chis
  • Unknown
    Unknown
    #5
    Options
    chrisk06 said:

    I had never heard that
    I had never heard that story. I love it. I have walked up to total strangers that I have overheard say that they have had this really bad heartburn that never seems to get better, and told them about EC. My friends laugh at me, but gotta spread the word. Steves nephews are young and think...not me...well I hope that with enough nagging, they will get screened. The memory card is a great idea. Steve's birthday is in June. I think I will do that then.

    Chis

    This comment has been removed by the Moderator
  • chrisk06
    chrisk06 Member Posts: 110
    #6
    Options
    unknown said:

    This comment has been removed by the Moderator

    Awesome idea
    Sherri,

    I will help you work on that e mail address. And maybe, like you said, these commercials for GERD/reflux need to tell people about EC. Maybe that is another place to start!

    Chris
  • K_ann1015
    K_ann1015 Member Posts: 500
    #7
    Options
    here is a shorter link..
    The lady that runs the Esophageal Cancer Action Network site said that you can use this shorter link:
    http://www.ecan.org/

    Also-Sherri--thanks for the "Hollywood" connection possibility. Just as we are moved to make a difference---I think if we are respectful, polite, understanding, persistent & loving- we should be able to find people to fund this kind of effort! I am going to work on it!
    Kim
  • Unknown
    Unknown
    #8
    Options
    K_ann1015 said:

    here is a shorter link..
    The lady that runs the Esophageal Cancer Action Network site said that you can use this shorter link:
    http://www.ecan.org/

    Also-Sherri--thanks for the "Hollywood" connection possibility. Just as we are moved to make a difference---I think if we are respectful, polite, understanding, persistent & loving- we should be able to find people to fund this kind of effort! I am going to work on it!
    Kim

    This comment has been removed by the Moderator
  • Pghmomma
    Pghmomma Member Posts: 141
    #9
    Options
    K_ann1015 said:

    here is a shorter link..
    The lady that runs the Esophageal Cancer Action Network site said that you can use this shorter link:
    http://www.ecan.org/

    Also-Sherri--thanks for the "Hollywood" connection possibility. Just as we are moved to make a difference---I think if we are respectful, polite, understanding, persistent & loving- we should be able to find people to fund this kind of effort! I am going to work on it!
    Kim

    sherri
    I couldnt have said it better myself. Everything that you have posted sounded just like what my father was doing...


    Periwinkle pride!!!

    Tina
  • Unknown
    Unknown
    #10
    Options
    Pghmomma said:

    sherri
    I couldnt have said it better myself. Everything that you have posted sounded just like what my father was doing...


    Periwinkle pride!!!

    Tina

    This comment has been removed by the Moderator
  • Ellie_E
    Ellie_E Member Posts: 50
    #11
    Options
    chrisk06 said:

    Periwinkle Pride!
    Kim

    I am right there with ya! I wear my periwinkle bracelet all the time. It is unfortunate that it would probably take someone famous to get people to be more aware. Steves nephews have been told they need to be checked and they act as if it will not happen to them. Steve, his Dad, and brother all passed away from this ugly disease. I just wish they would screen people for EC like they do other diseases. But no, they dont, so by the time most people realize they have EC its too late for some. I try to spread the word, but I guess we cant get to everyone.


    Chris

    Family history
    Chris,
    My husband Jim's family also has a history of EC. His brother had Stage 3 10 years ago. He is fine now, but Jim did not get checked back then and has ended up with Stage 4. As soon as Jim was dx, our son, who is 35, went to the dr. for an endoscopy and found out he had Barretts. The dr. put him on medication right away and said if he is vigilant and keeps getting his endos each year he should be fine. You might want to pass this on to Steve's nephews. If it's caught early, there are things that can be done.

    I agree with all of you about getting someone famous. Unfortunately this hated disease does not get enough publicity. Maybe we can change that somehow.

    Ellie
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #12
    Options
    unknown said:

    This comment has been removed by the Moderator

    another celebrity
    Sherri,
    Someone on another site mentioned Dr Oz had a segment on EC. I found the video on-line and as it turns out, Kim Kardashian was asking Dr Oz about EC. Turns out her father (Robert Kardashian from the OJ Simpson trial) died from EC at the age of 59. Suffered from acid reflux for years and took lots of OTC meds. Since she was the one that was asking Dr Oz about EC....I wonder if she would be the one to bring this subject into the "limelight." Just a thought.
    Jane
  • K_ann1015
    K_ann1015 Member Posts: 500
    #13
    Options
    JaneE2366 said:

    another celebrity
    Sherri,
    Someone on another site mentioned Dr Oz had a segment on EC. I found the video on-line and as it turns out, Kim Kardashian was asking Dr Oz about EC. Turns out her father (Robert Kardashian from the OJ Simpson trial) died from EC at the age of 59. Suffered from acid reflux for years and took lots of OTC meds. Since she was the one that was asking Dr Oz about EC....I wonder if she would be the one to bring this subject into the "limelight." Just a thought.
    Jane

    Jane & Sherri and all the rest here---
    sounds like great ideas so far!!! We'll have to follow up on them---I have some ideas too...

    My dad (the reason I am on this site) just found out that his younger brother has swallowing problems too and he is being tested for EC....

    I, like you all, am not going to take this lying down... Kim Kardshian, Sharon Stone--whoever we can find that might help support the research for EC...

    I just found this out...
    March 6, 2007
    Humphrey Bogart Lost His Battle Against Esophageal Cancer

    September 14, 2006
    Ann Richards former Tx governor Dies at 73 from EC

    Actor Ron Silver, 62, dies of esophageal cancer MArch 2009
    Won Tony for ‘Speed-the-Plow,’ earned Emmy nomination for ‘West Wing’

    I have more research to do...thanks all for the inspiration!
    Kim
  • chrisk06
    chrisk06 Member Posts: 110
    #14
    Options
    idea
    Kim K. sponsors a nascar so maybe she would be able to bring some awareness! i will work on seeing if I can find her on facebook or maybe through the nascar website!
  • K_ann1015
    K_ann1015 Member Posts: 500
    #15
    Options
    chrisk06 said:

    idea
    Kim K. sponsors a nascar so maybe she would be able to bring some awareness! i will work on seeing if I can find her on facebook or maybe through the nascar website!

    awesome idea Chris!
    awesome idea Chris! Also--did you go on that ECAN site (Esophageal Cancer Action Network). The lady that runs it also lost her husband and she liked the idea of trying to get celebrities to support these efforts. I want to contact our local legislators and see if they will support April 2010 being the first EC awareness month.
    Kim
  • chrisk06
    chrisk06 Member Posts: 110
    #16
    Options
    K_ann1015 said:

    awesome idea Chris!
    awesome idea Chris! Also--did you go on that ECAN site (Esophageal Cancer Action Network). The lady that runs it also lost her husband and she liked the idea of trying to get celebrities to support these efforts. I want to contact our local legislators and see if they will support April 2010 being the first EC awareness month.
    Kim

    Kim,
    I found a website that
    Kim,

    I found a website that had e mail links for her "people". Hopefully it works. I love the idea of EC awareness month.

Discussion Boards