Topic: Cholangiocarcinoma Foundation - "On the Road"

Hi folks,

I just wanted to take a moment to introduce myself to all of you wonderful people on the message boards! I've been a longtime "lurker" so I've finally decided to step out of the shadows.

My name is Rob, I lost my mother to this terrible cancer on January 17th, 2013. From diagnosis to death, she barely made it past two months.  When she was diagnosed, I struggled to find answers as to what this cancer exactly was, whether there was a "cure", how long my beloved mother would live and how her quality of life would be affected.  Sadly, I only had a brief moment to browse these forums before the next two months of my family's life would become a living hell. But in that short amount of time I was truly blown away by the sense of pure love and unending support that each of you were providing to each other in your respective "times of need".. whether that was losing your loved one and asking for a prayer or going through another round of exhausting chemotherapy and asking for an ear to vent to. I truly felt comforted during my own personal times of emotional struggle even though I had never posted a single word on the forum.  For that, I would like to thank each and every one of you.

Last year I was fortunate enough (and honored) to be connected with the foundation to offer my time and energy as a way to give back just a fraction of the love and support I've "taken". Since then, I have been traveling to conferences with other wonderful volunteers and members who have all been affected in various ways by cholangiocarcinoma.  I hope to bring a more personal face and social media connection to the foundation in the coming months!  I'll be posting some of the photos from our travels on the boards from time to time as we take the foundation "on the road" to widen our already massive, worldwide reach. Everywhere we go, we are often greeted by some of the most respected members of the medical community from the best facilities around the globe. They come up to US to thank us for being there for their patients and families, when in reality we are thankful beyond words for THEIR experience, knowledge and assistance with our efforts to find a cure for this disease!  It is a truly humbling thing to see. That being said, we are also forming new relationships every day with physicians, experts, researchers, etc... all who will be pivotal in helping us build a better foundation for YOU.

With this illness, we are all a member of a family we never wanted to be a part of, but rest assured, I can tell you firsthand that this foundation is made up of the most wonderful, selfless people whose every waking minute is spent trying to heal the afflicted, comfort the mourners and honor the departed... and we will not stop.

Thank you for taking a moment to let me ramble and I'm excited to chat with you all in the future and give you a glimpse into the foundation's team efforts.

Love to each and every one of you,
Rob

- CC Foundation "Road Warrior"
- Son of my beloved mother Becki who was taken from this terrible disease on 1/17/13

Re: Cholangiocarcinoma Foundation - "On the Road"

Hello and Welcome to our extraordinary family and I am very sorry about your Mother. We sure can use your help and so happy to have you aboard!

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: Cholangiocarcinoma Foundation - "On the Road"

Rob,

Well said and thank you also for all you have done and will be doing in the future to spread the word.   Looking forward to your future posts.

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: Cholangiocarcinoma Foundation - "On the Road"

Hi Rob
Thank you for taking the time to reach out to all of us and for the commitment of your time and passion.  I know we all derive enormous assistance, insight and comfort from this site,  whether we are daily contributors or regular "lurkers".
Please keep us posted on your travels - we are all together in our hopes and prayers for a cure to this awful disease.

Re: Cholangiocarcinoma Foundation - "On the Road"

Nicely done, Rob. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma Foundation - "On the Road"

Love your moniker "Road Warrior" as so many people are warriors in this fight.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.