Awhile ago I asked a group of people and not just ordinary people but cholangiocarcinoma fighters, what’s one piece of advice you’d give about anything related to Cholangiocarcinoma? Below are their exact responses but first my piece of advice is; DON’T LISTEN TO THE STATISTICS!
“Perfect advice….6 months…to what…Perfect my karaoke voice and hip shake”
“Go to doctors who specialize in this rare cancer. Don’t hesitate to get second opinions on everything.”
“In this case sometimes everyone is not created equal, sometimes it depends on your body how reacts to treatments . Or what kind of cancer tumor you have. But remember we are all here for each other.”
“Don’t wait for tomorrow, do it today.”
“Listen to yourself and how you feel. Fight for what you feel is, the right thing. And when you no longer feel like you can keep fighting. Thats ok too. We are the ones who live our lives, so if your Dr’s aren’t giving you the answers you want, move on till you find one that will.”
“I would say, you are not alone in this fight, talk to us as we are always here. I call everyone here my support group and love it.”
“Always have hope.. and find doctors that believe in looking for a treatment instead of telling you to just go home and die.”
“Never give up Hope..only God knows our future. Always get multiple opinions. Use a medical facility that has a multidisciplinary team. You know your body best..listen to it!”
“Every day we have is a BRIGHT and NEW day- a new opportunity to be a positive role model, a positive example of grace under stress, and a chance to look for the bright and beautiful things we overlooked or ignored before our diagnosis.”
“It’s ok that your friends/loved ones have no idea what to say. There in shock too! Take all the weird comments/advice with a grain of salt!”
“If you don’t feel well, relax and take it easy but don’t relax if you feel good! Get your butt up and enjoy your life! Just because you have cancer doesn’t mean you need to lay down and die!”
“Remember that this affects your whole family and your entire circle of people who care about you – and that the circle is so much bigger than you know. I am astounded at the number of people who are praying for me. It’s humbling and makes me feel so loved.”
“Learn to live with the new normal”
“I would say and do say, “Don’t lose hope because EVERYDAY holds the possibility of a miracle!”
Moral of the story, listen to your body and advocate for yourself and what you believe in.