March 5, 2013 at 3:02 am #69337chezwrightaol-comSpectator
Jackson…I second all you said. The above people and more have sustained me these past two years. The willingness to share stories, to add information and to be a cheering section have been vital to my ability to go forward with this, quite frankly, frightening disease. The husband of a friend of mine once referred to it as “your predicament.” Exactly.
But this website has been a source of comfort and inspiration. I know it has been and will be for many more……..Thank you all…….March 4, 2013 at 6:42 pm #69336marionsModerator
Thank you. But the success truly is based on the interactions of the incredible members of the discussion board. Without their continuous input and sharing of thoughts and ideas, stories of all kind would not reach the patient community at large.
Years back, this venue of communication encountered much criticism due to the fact that people post inaccuracies, skewed personal opinions, misleading information, and that it might influence negatively the treatment of this disease (in a broad sense.) This may be true to some extend however; given the current popularity of social media and the “new” way of interacting, the benefits of this gathering place offering an uncensored venue to express thoughts and ideas, has reached a level of recognition which can only be described as unique and admirable. The true power truly lies within the contributions of the wonderful members of this site. We have so much to be grateful for.
Hugs to each and everyone.
MarionMarch 4, 2013 at 4:14 pm #69335
Thanks Marion, you’ve been so wonderful and I meant to thank you by name. Your replys to my posts have been so helpful and informative, and really did guide me to Drs. Selby and Lenz. Like I said earlier, I can never thank you enough. God bless, J.March 4, 2013 at 5:42 am #69334marionsModerator
Jackson….Fantastic news. The wonderful, caring, selfless people tirelessly working behind the scene of this organization, can’t thank enough the members of this site, who share their very own stories, support, advise, console and direct others touched by this cancer. Together we can make a difference in the world of Cholangiocarcinoma.
Jackson, please stay in touch. Many have undergone a resection similar to what your friend is recovering from and are ready to support you if so needed. But then you already know that.
MarionMarch 4, 2013 at 4:15 am #69333lainySpectator
Dear Jackson, thats what friends are for! In Teddy’s 5 1/2 years with CC he never came on. One of his favorite sayings was, “I just don’t get in to computerism!”. Had to love my little guy! He made up some of the best words in the world, Don’t be a stranger as we do look forward to hearing from you.March 4, 2013 at 4:02 am #69332
Thank you Lainy, Mark, Gavin, Randi, and Pamela. I’ve read so many of your posts I feel like I know all of you. I wish you all happiness and recovery for you or your loved ones, whichever the case may be, and I’ll keep ckecking in, just to see how you’re doing. My friend knows of this site, but this whole experience has been so terrifying for him that he’s “assigned” the research to me, so I sort of monitor it and report back to him. Hey, that’s what friends are for–especially at a time like this. Take care everyone, I’ll be back soon. I appreciate you so, J.March 2, 2013 at 11:07 pm #69331mparsonsSpectator
Your post made my day…or week…or month! Not only is your post uplifting for those of us fighting this cancer, but it is gratifying to know that what you learned here has been so important in helping you give your friend the support he needed. In 2011, my wife and I also learned about Dr. Selby through this site, and he changed our lives.
As Randi said, you’re now part of the family and we’ll look forward to hearing more from you as his recovery progresses. You’re a remarkable friend!!
MarkMarch 2, 2013 at 8:40 pm #69330lainySpectator
Dear Jackson, a friend like you is what we all need and believe me when I say those of us who are on this site get much more from it than we give! I always say our family is full of heros, brave and courageous and loving family from all over the world. So glad to hear the positive outcome for your friend and you give so much hope for all our CC patients. Thank you!March 2, 2013 at 8:30 pm #69329gavinModerator
Superb stuff! I am so very happy that your friend was able to have his surgery and that it went well and he will be on his way home on Monday! We so love hearing story’s such like that!
And what a great friend you are to him as well for all that you have done for him. I so hope that his recovery continues to go well and please let us know how he gets on.
My best wishes to you and your friend,
GavinMarch 2, 2013 at 8:20 pm #69328RandiSpectator
Oh my gosh, your post gave me chills. I am so very very glad that this site has been such a help to you and your friend. I know it was and continues to be a great help and support for me.
I am so happy that you found a great doctor and that your friend is doing so well.
Keep us posted and tell your friend that he can join us when and if he is ready. Y’all are family now!
-Randi-March 2, 2013 at 8:01 pm #69327pamelaSpectator
What a wonderful post, Jackson. I am so happy for you and your friend. Please keep us posted on your friend’s health. We love, love, love uplifting posts!!!
-PamMarch 2, 2013 at 6:31 pm #8016
My friend had his surgery with Dr. Selby five days ago. He will be released from the hospital Monday. As per Dr. Selby, there is “no cancer in him that we can see.” I know there might be microscopic cells that they can’t see, but they’ll deal with that as they come up in the future–perhaps with chemo, perhaps with sterotactic radiation.
He went from a death sentence to a manageable illness in 30 days, and it is all because of this site. I learned what CC was on this site. I learned to get a second opinion and maybe a third, from a knowledgeable doctor who has seen many, many CC patients. I learned the names of Dr. Lenz and Dr. Selby on this site. I immersed myself in the tremendous wealth of information here.
I read the touching posts about the sons and daughters and mothers and fathers, and read about their treatment, down to the last detail. And I learned not to quit until you find a doctor who won’t say no.
This site saved my friend’s life. Whoever runs it, you are an angel and you are doing something so important for so many people. I wish I could repay you but nothing would never equal what you’ve done. God bless your great work here. I will never forget this experience or this website for as long as I live.
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