Cancer is a scary word. Cholangiocarcinoma is an even scarier word. What makes it better is finding other people affected by Cholangiocarcinoma. It’s no easy feat, I know. It’s a small community with only 2-3,00 people diagnosed each year in the United States.
The more people you connect with the better you feel. At least for me that’s how it is. You can start through The Cholangiocarcinoma Foundation message boards.
Last October, about two months after my resection I heard about Immerman Angels. Through them I was connected to my mentor, who has turned out to be a very dear and close friend. Fast forward two months later to December when I participated in The Cholangiocarcinoma Foundation Giving Tuesday contest. I entered my photo in the Unselfie contest (and won by the way) and two people similar in age reached out to me via Facebook. Through the power of Facebook and messenger I was able to create a group message for the four us. We connected instantly and talked daily for months. We shared stories about our life before, during and after this dreaded cancer. We continue to talk almost daily a year later.
This cancer is awful but it has connected me to so many amazing people. I had made so many friends because of this. I’ve met and connected with people I normally wouldn’t have. I’ve talked to people from all over the United States, Canada, the UK, Australia, New Zealand, Kenya and Spain to name a few places. I wish it was under different circumstances but the amount of support we give each other is incredible.
If you’ve been newly diagnosed I would highly recommend you connect with others, not just with Cholangiocarcinoma but others with cancer. There’s something calming about hearing someone say, “I know exactly how you feel” and knowing they truly do.
Here are a few websites that I have found helpful besides the obvious (www.cholangiocarcinoma.org):
“Stupid Cancer has become the largest US-based charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media.”
“Developed in part with the American Cancer Society, WhatNext uses patent pending matching algorithms to connect people to highly relevant peers, firsthand experiences and American Cancer Society resources. Additionally, WhatNext gives people a way to share experiences with their illnesses using an easy to use timeline format. As a result, when people share their experiences they are catalogued and easy to find by others.”
“I Had Cancer is a cancer support community that empowers people to take control of life before, during and after cancer. Members can search by type of cancer, age, gender, location, year of diagnosis and type of user so that they can easily find others who have experienced their specific situation.”