Looking to connect with others facing this disease
- This topic has 15 replies, 13 voices, and was last updated 14 years, 9 months ago by
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You are right Melanie…I don’t know of anyone who had heard of it prior to being touched by it either, themselves or, their loved one. One of these days everyone will know of this cancer.
Best to you,
MarionHi Marion, thank you for the welcome! This is a club I never imagined I would belong to. Especially since I had never heard of Cholangiocarcinoma before I was diagnosed. I am sure everyone else is in the same situation though.
Thanks again,
MelMel…..Hello and welcome. Mel, we have other members from Canada. You might want to add another posting and see if someone will answer. I agree with you in that there is nothing like meeting face to face. We are all so very connected and a personal visit is the icing on the cake.
I am so glad that you have found us,
Best wishes,
MarionWelcome Mary,
You will find some of the most intelligent, compassionate and caring people on this site.
Come often and remember….the only dumb questions are the ones unasked!
You will find a wealth of knowledge, practical experience, support, cheerleading, hand-holding, laughs….the list goes on and on.
We are all on this journey together!
Hugs and Welcome!
PamHi Mary,
I too was looking for a support group ( in Toronto) and couldn’t find one. I did come across a website today http://www.cancerbuddiesnetwork.org. Unfortunately there seems to be only 3 people who have registered with bile duct cancer, myself from Canada and two others from the UK.
It would be nice to go out for coffee or something and talk to someone face to face who is going through the same ordeal.
Best of luck to you,
Melhi mary iam 52 male from india and a practicing gastroenerologist by professin and see many cancer patients day in day out. unfortunatly i was bitten with the same bug of hilar cholangio carcinoma in 2008 jan and underewent edge free resection of left heptectomy along with 2cms klatskin tumour., since then i have improoved a lot and every month iam under going scan which is negative .lft is normal viral markers are normal. hoping to live normal full life .in between i have summited 15000ft trek to nathulla pass as well i did couple of marathon walks here in my place . life is going as usual . mind you this disease which i kept it to my self and my wilfe and no body niether my friends nor my relatives of fellow doctors know is . we have kep it secreat. things are looking norma for me now . and i wish i will live normal life . dr mahipal
Hi Mary:
I’m with you — the more I live with this disease, the more I understand that no one can say anything about it with certainty. I probably won’t make it to be an old lady either, but I’ve already beat some of the most dire predictions.
Courage to all of us,
IreneMy thanks to all of you for your wisdom and help. I met with the Cyber Knife team a few days ago and am looking forward to getting the procedure done. I also met with my Oncologist again, I really wanted to know what my prognosis is, he told me they don’t know, it could be months before another growth appears or it could be years, I’m shooting for years. I’m feeling a little more positive about my future, I don’t expect to live to be an old lady, but I’m not ready to quit yet either.
MaryDanielle, one of the things that has helped me the most over the last five years is this thought: Doctors can tell you what USUALLY happens with a particular disease, but they can never, ever tell you for sure what will happen in YOUR case.
Hope this helps!
Kristin
Hi Mary,
Welcome to the group. There are many members of the group whose experiences clearly do not fit the bleak picture painted the research (much of which is dated). You sound like a strong person – – I ‘ve also heard good things about Cyber knife.Kristen, thanks for posting your experiences, this is exactly what we needed to see tonight. My husband is just beginning his CC battle (diagnosed in Jan 2009 with Klatskin, currently can’t resect) and it is inspiring to hear to hear. I am writing from the wireless at the Mayo (my hubby has an infection which they’re trying to kill so that he can begin chemo). We both were pretty depressed tonight but reading your experiences was a good medicine.
Warmest wishes,
DanielleHello, Mary and welcome to the best little club in the world that no one wishes to join. Sounds like you are in very capable hands. There is so much to research and learn that it can all be overwhelming. My husband had cyber knife in December and its amazing! He had a Whipple surgery 3 1/2 years ago and it returned last April. Its gone now after radiation and cyber knife. The BEST medicine is HOPE. Keep on as you are as no one knows what is going to happen, there are no time limits. We are glad you found us and visit often. For your well meaning friends I am posting something I found that for us really says it in a good way. I will put it under “Member’s Cafe”. I will call it Thoughts
about cancer.Hi Mary,
We’re so glad you found us! I think you shouldn’t put limits on your life, because you just don’t know. As you read these boards you’ll find that people have such different experiences with this disease that it almost seems like a bunch of different diseases.
In my case, I had a resection five years ago, and a recurrence almost three years ago treated with radiation and Xeloda. That treatment didn’t get rid of the tumors, but since then they haven’t grown– and no one can explain why. I feel great and have no symptoms or problems at all.
So, yeah, your friends are being a little naive when they say you can “beat this cancer.” And we all have “limited time left”, cancer or not. But I think you should make your present and your future as big as possible in your mind.
We’re here to help you in any way we can!
Kristin
Hi you have come to the right site as there is a lot of support here and varied outlooks too which will be helpful to you. Janet
Welcome Mary, and it’s great that do have a support group of friends and family, in addition to this group. The guys and gals on this board have been an amazing bunch, always here to address questions & concerns. Clearly, you’re a fighter… keep it up! I’ve heard good things about the RFA & the cyberknife treatments. You’ll be in our thoughts.
Tess
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