Topic: New Members

Hi,

I just want to say that I am glad to see that there seems to be more awareness of this disease & this site even in the few months that I have been here. It is sad, but also grayifying to see that there are more & more new members seeking out information, help & support. I feel this site & the people on it are truely making a difference.  It breaks my heart that this terrible cancer is causing so much pain & suffering, but atleast here there is help. There seem to be more & more postings recently. Many of them have been heartbreaking and there have been many who have lost their battle, however, I am also seeing more successes too. I do feel that there is strength in numbers and that along with everyone else on this site we are making a difference.  Thanks to all of you, especially those of you that had the initiative to start this wonderful site. You have been my strength & salvation and have made a difference to so many. Keep up the good work!

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: New Members

YES, DITTO, Darla. I also want to let you all know that I have sent another letter to the OPRAH show last Friday, but so far no results. I still have copies of the 35 letters and am trying to come up with another venue. In the meantime since I had so many responses to the letters I would be more than happy to receive more from any newcomers. I was told that writing the letter was very cathartic. So, anyone wishing to have their letter as Caregiver or Patient involved with CC please e mail your letter to me and I will add it to the bunch. I still cannot figure out how ANYONE reading these letters would not even respond.

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: New Members

Lainy,

Thanks for your perseverance. We may have to do some brainstorming & try a different venue. I also do not know how anyone (especially Oprah) could read those letters & not at least respond. In all fairness, maybe they never reached her, but you would think that even anyone on her staff would atleast have responded to our pleas for help. There is so much support for other cancers, why not for CC.  I know it is rare, but that is why we need to bring more attention to it. We can't give up!

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: New Members

FYI:  I sent all the letters registered and did get a receipt. Perhaps people just bury their heads when they do not understand, wish I had an answer.

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: New Members

Try the Ellen Degeneres show... she seems to be one celebrity that hasn't lost touch with the common folk.

Re: New Members

Great idea, I like her. I will start making copies of my copies.

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: New Members

You might also try the Dr. Phil show. He and Robin are always trying to bring about awarness. Atleast it would be another venue.

Re: New Members

Good,  about Dr. Phil but doesn't he just deal with psychological problems? I spent the morning deleting Oprah's name from all the letters. Would also like some feedback  if anyone else wants to e mail a letter to me to add to the pile.
Other wise I will send these in to Ellen and Phil next week.

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: New Members

What about the program "Doctors"? I havent watched it but I read something about it that might make it applicable.

Any of the Today, Goodmorning America type shows often do segments that we fit into.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: New Members

Hi Kris. The problem with the doctors would be like a 5 minute segment and we would be done. I am trying to pick a venue where we could possibly get the whole hour. Has anyone heard that Montel will be back? I had heard yes then no.

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: New Members

Good job everyone. Some things to think about. I'm not sure about Montel or Dr. Phil. I do think that  Ellen Degeneres is a good choice.  I agree that  we should try for somewhere that would devote an entire program to us and CC. I suppose that even a small segment would be better than nothing. Atleast it would be a start  Anything we can do to make people more aware is better than nothing at all. I am really disappointed that we didn't even get a reply from the Oprah people. Rather sad, isn't it?

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: New Members

Just a thought, but perhaps sending our letters to Barbara Walters. She is dealing with a friend with pancreatic cancer, she may listen, it is worth a try. One day, someone will realize that there is a possibility that by researching the "rare cancers" such as CC, they could uncover a "link" that could be a key to finding the cure for cancer.
Barbara

Re: New Members

Hi Everyone,
   I am so glad to see that we are going to try somewhere else - I was SO disappointed that nothing came of the Opray letter (yet, that is). It is a great idea to send them off - to Ellen first, maybe , but - Barbara Walters is another great choice.  I, too, cannot imagine that anyone reading those letters would not at a mimimum acknowledge - perhaps they are backlogged, and didn't even get to them yet?? At any rate, Lainy - thanks for organiizing this effort.
  I had also noticed the increase in new members, and hope that this means increased awareness, It is so wonderful to know that people have this forum to come to when they need it.  Like Darla, I don't know what I would have done w/o all of you. Without the vision  of the originators, we would all be stumbling by ourselves, so - hats off to them!

  I also see more and more people sending in pictures on "Faces", and read through them every once in a while, just to remind myself of the struggles that CC patients and their families face so bravely.

Joyce  C

Re: New Members

Barbara Walters is a great idea.  Maybe we could link bile duct cancer to pancreatic cancer as twin deadly diseases that need more research and attention paid to them. 

I would also like to thank everyone on this board.  You all are truly inspirational and a lifeline for me.  I wish we could all connect in person some day... but I know we will connect in Heaven.

God bless,
Lisa

Re: New Members

I agree Lisa. Barbara Walters does sound like a good option. Also, linking the two, bile duct & pancreatic, as rare & deadly diseases that are not getting the attention other more commonly known cancers do is a good starting point.  Also, as Barbara said, if more research were done with these two cancers, it could be the key to eliminating cancer all together! Wouldn't that be great?

Lisa, we are all connected in our own way through this great site and as you said, I am sure we will all connect again when we have passed on from here.

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: New Members

OK you twisted my arm (not really) but Barbara Walters and the View will be my next package!  I just have to copy everything and send it off this week. Again if any newbies want to add a letter as caretaker or patient now is the time. Just send it to my email address and I will send it along with the 35 that I have.

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: New Members

Lainy, I think it would be awesome if you and Teddy were to be invited onto the View, along with the founders of cholangiocarcinoma.org.

Re: New Members

Thanks Lisa. I think it would be awesome if I just heard from one of these places. I think if I went on TV it would cost me too much. Face lift, hair dye, teeth capped, weight loss!!!!!!!!

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: New Members

Lainy,

I think it would be wonderful if we even got one reply, too.  As for the TV appearance. I think you would be great just the way you are, both on the outside & even more important on the inside & that too would shine through. Thanks for all the effort you are putting in to this. I sure hope it pays off.

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.