Topic: YOUR PERMISSION IS NEEDED

Today is September 7th and we only have 1 more week to get those letters to me and to Sophie,  to send to Oprah. I have come up with an idea that I hope will not offend anyone. I am starting to copy posts to our CC site, especially first time notes as I feel they really show the emotion of CC.  No one will know who wrote them as I am only using first names. If this is OK with everyone I will go into archives for past notes and use some of those as well. BUT we STILL need your letters if we are going to do this project. Remember 1 page only and Caretakers go to me and Patients go to Sophie.  Sophie is going through chemo right now and still doing this with me so lets show her we support her by getting the letters in!!!  You go Sophie!!!   I miss you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: YOUR PERMISSION IS NEEDED

You have mine for sure. But it may be better if you contacted those who you want to quote directly as we can only speak for ourselves.

WAY TO GO LAINY AND SOPHIE!!!!!!!!! You guys are working your tookies off for us and I really do appreciate it. Now we all as a group have to get off our tookies and respond so this can go through and all your hard work will mean something. Thanks again.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

3 (edited by JeffG Sun, 07 Sep 2008 11:46:04)

Re: YOUR PERMISSION IS NEEDED

Hi Lainy...  I admire your robust efforts and support you all the way.  I don't think there is a problem using the Introduction post in support of our efforts for the Oprah awareness project.  However, I would run this by Stacie and our legal advisory gurus first.  The only thing causing me to be hesitant is two Federal Laws,  the National Privacy Act of 1974 and the Health Information Portabilityand Accountability Act of 1996. (HIPAA)  I would say all the information posted on this site is concerning someones health and I would not want you to have to get in any trouble.  If the information we use, can in any way shape or form can be connected to, or trace back to the patient, there could be a problem.  I don't have a problem with mine but others may, for some reason we are unaware of.  Just withholding the last name may not be enough.  This HIPAA Act is pretty strengent and dealing with it for many years, a consent of release form was always required.  Even the consent form had to be very specific, who,where,why and have an expiration date as well.  You know how awkward government programs and laws are.  I would want you to play it safe and sure.  I've been a memeber for so long ,I can't remember if there is a legal user agreement rules and condition dislosure for this site and  use of information with in.  Don't let this stop progess though ,you guys are doing a great job collecting this information.  Who knows it might not apply in our case?
Bless Ya and Teddy!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: YOUR PERMISSION IS NEEDED

I do believe this is all confidential information, or it should be. I have had second thoughts about this project as it relates to Oprah. I do not think it is as appropriate to enlist her help as it would be  someone like Katy Couric, who has pancreatic and colon cancer foundations which already exist. In any case, written permission should be obtained from anyone who's whole or partial name, email ID, or initials are used.

5 (edited by JeffG Sun, 07 Sep 2008 14:36:20)

Re: YOUR PERMISSION IS NEEDED

Wabals,   I'm sorry to say any information provided or put on the internet is strictly volunteered information.  There is no way what so ever to keep things confidential on the internet, we all know that.  The only caution is that we do not violate any trust of members or laws.  The Idea of raising awareness for this type of cancer is a humane and nobale thing to do and the only way is by public awareness and support for research. How do you think the cure for polio came about?  Public awareness has save countless number of children's lives.  I'm no way attacking this idea, just want to make sure we do it legally.  If it is not legal to do, I'm sure it won't be done. Lastly, there are over 200 different types of cancer.  Cholangiocarcinoma is just one sitting on the bottom of the recognition list for research; and with out research no cure.  I respect your opinion, as I hope you will mine. I sense we are on the same page ,just want it done right and legal.

God Bless All!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: YOUR PERMISSION IS NEEDED

You have my permission to use my information.  And thanks for your great efforts. 

Raising awareness is a crucial element to finding a cure.  That's what the whole advocacy/awareness/political campaign about breast cancer is all about.  Twenty years ago people got busy about breast cancer awareness, and lo and behold, research dollars started pouring in.

Of course, the fact that breast cancer is one of the most common cancers really helps the awareness factor... that is why it is so important to raise awareness of rare and deadly cancers like cholangiocarcinoma.  We tend to get ignorned.

Re: YOUR PERMISSION IS NEEDED

Well guys, so far I have had only the one negative comment but will email
Stacie and ask her about it. I was never going to include names on the ones that are from the "past". Just a first name. It was an idea to send a  bunch or notes to show this is "dead" serious!
I will let you know what the board says. I was too lazy today to write her, one of a caretakers "down" days. I am just lying around watching stupid movies!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: YOUR PERMISSION IS NEEDED

I think it helps to have someone famous. Walter Payton died of cc and his family set up a foundation, see:

http://www.payton34.org/

His wife and children seem very dedicated to this cause, here in Illinois I saw TV spots of his kids advocating for organ donation. Maybe we can work with them on something, I just saw they are having a fundraiser this Saturday and might try to make it:

http://www.payton34.org/run/

Patty

Re: YOUR PERMISSION IS NEEDED

Hey Lainy, you certainly have my permission.  I think Oprah is the better of the two because she carries a larger viewer base than anybody, and she sure does carry alot of influence.  Thanks for the encouragement on chemo.  I actually felt strong enough today to drive over to Trader Joe's. 

I'd like to meet you Lainy.  I visualize you in a hula skirt dancing.

So far including mine, I have 4 letters.  I plan to send them even if nobody else sends more. 

Prayers and prayers and more prayers for all of you,

Sophie

Re: YOUR PERMISSION IS NEEDED

Sophie, as usual you made my day!  I am past hula skirts but am a short, white haired grandma who is very tenacious and when I fight for the under dog I know no brick walls!  So glad you feel better. We also go to Trade Joe's. Where do you live? I would say you and I would get along just fine!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: YOUR PERMISSION IS NEEDED

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

Today is a new day. Congratulations, you are already a survivor!

Re: YOUR PERMISSION IS NEEDED

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?

13 (edited by JeffG Sun, 07 Sep 2008 19:23:36)

Re: YOUR PERMISSION IS NEEDED

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.

Take it to the Limit,One More Time! (Eagles)

Re: YOUR PERMISSION IS NEEDED

Lainy,
   You have my permission - you guys are terrific.

Joyce

Re: YOUR PERMISSION IS NEEDED

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: YOUR PERMISSION IS NEEDED

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.

Re: YOUR PERMISSION IS NEEDED

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

Re: YOUR PERMISSION IS NEEDED

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

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: YOUR PERMISSION IS NEEDED

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".

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: YOUR PERMISSION IS NEEDED

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

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: YOUR PERMISSION IS NEEDED

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.

Re: YOUR PERMISSION IS NEEDED

Lainy,You may use my postings. I think they pretty much cover our story.

Re: YOUR PERMISSION IS NEEDED

Hi Lainy,

You have my permission also.

Have a great day!

Karen B.

Re: YOUR PERMISSION IS NEEDED

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.

Peace, hope, and healing to all!