YOUR PERMISSION IS NEEDED
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Sorry to say, but I was very relieved to hear that you couldn’t pass along our posts without specific permission. I have to stay anonymous because my work as a freelance writer would be torpedoed if some of my editors had any idea I was living with incurable cancer. Sad but true.
Darla, just mentioning as you did the part about Vietnam Vets possibly picking up liver flukes in the war which now may lead to cc is a very important point.
If we can screen these men for cc, it might save lives.Lainy,
I have just sent my letter to you. Not sure if what I said is what is needed as I just came on this site a few days ago. Please let me know if it is appropriate or what else I can do to support this effort. I can no longer help my husband, for him the fight is over, but I do want to support the many others that are now or will be dealing with this terrible disease.
Darla
Thank-you all!!! I am feeling so good about this! And if Oprah turns us down we will not stop. We will then find out how to get started in Washington.
To e-mail Sophie or me, just look at the left of these posts where our name appears and you will see the words e-mail. Click and write! If you have a problem just use ” lainy@wbhsi.net”.Lainy,
You have my permission to use anything that I have posted on this site. I am also sending you a short letter to include when you send your letters to Oprah.
Darla
Lainy,
Tell me how to e-mail this to you – did someone say there is an e-mail address stored in here – I looked under your user name, but – dodn’t see an e-mail address??Will you take a look at what I send and see if it is appropriate? I don’t know exactly how to do this – I did mention orphan cancers, however!
Thanks – Joyce c
Lainy,
You are right. It is a start. Maybe we could contact our senators and congresspeople also. Randy Pausch went to capitol hill with his story. Since it is an election year, people might be more open to listening.Let’s just say we have to begin somewhere. Right now I feel like I have to do something so that “MAYBE” no one will go through what my husband is going through. Have you ever noticed on any shows or written matter about Cancer, Cholangiocarcinoma is NEVER mentioned? It was not even mentioned on the big telethon last Friday. There are too many on this site who are connected in some way to people dying too young, being diagnosed too late, what is late when one has no symptoms, having nowhere to turn because there is nothing even resembling a cure? Insurance companies denying tests because they do not know enough about CC. Maybe Oprah is not the answer but we have to try something. I simply refuse to believe that all these wonderful hero’s have gone and no one is going to fight for them. By the way, I doubt very much that Oprah’s staff will read any of these notes on camera. Its purely a means to get us representation on the show and hopefully get something started here. Who knows maybe we can get Walter Peyton’s family to appear…IF we are invited.
Wabals— I can see what your saying. It’s a good start. Oprah has made some world renoun impacts for people in need and continue everyday to do something for someone. The media is such a powerful tool if used approriately. I think Oprah has the broadess base of networking of any show in television history. She has touch the lives of so many. We will make sure the ethical soundness remain intact, I wouldn’t be part of it if it weren’t. Thanks again, for your input, keeps people on there toes, don’t you think? I think we both just want to make sure no one is hurt in the process. At least that is what I’m thinking.
God Bless Ya!
Jeff G.Jeff,
Your point is well taken on the lack of privacy on the internet. I guess what I was talking about the confidentiality expected of those who participate in forums such as this. While not illegal to disclose information, it definitely would be unethical without permission. And Lainy, it looks like many people have given that to you. And I am not meaning to be negative., but Oprah’s show can be “tabloid-ish”. Yes, she has a large audience, but who is her audience and are they in a position to help?Sophie,
I plan on sending my letter by the due date. I actually have it written, but want to wait until after my CT scan on Tuesday. It may change my whole outlook…
And you both have my permission to use anything I have written on this site. I admire both of you for your perseverance and hard work on “getting the word out” on this terrible cancer.
Thank you both so much,
Sue
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