Hi and welcome to Beating Bile Duct Cancer. Now, it’s important to point out here, that I am definitely no literary genius and this will become evident early on. I have no particular “plan” for this site, I just knew there had to be somewhere for others to turn to.
I originally decided to use it as a form of journaling, to document my journey and work through all the emotions that had (have) been swimming round in my head for so long. You will also find links to sites on a range of topics that I have found useful from nutrition to supporting your emotional well-being. If you or someone you know has been diagnosed with this rare cancer, hopefully, there will be areas of this site/blog that helps you understand that you are not alone.
I would also love to hear from you:
- Have you been diagnosed with bile duct cancer?
- What support do you have?
- How have you started treatment yet?
- Have you struggled with pain or other symptoms that are impacting your day to day life?
- Have you tried alternative therapies?
- Are there any coping strategies that you have found helpful?
- Have you survived bile duct cancer and got some advice for those fighting bile duct cancer?
Anything at all!
So, here is a (relatively) quick overview of my story:
I was recently (at the time of writing this) diagnosed with Stage 3, inoperable, intrahepatic, Bile Duct Cancer. I was also informed that the focus would be on “quality of life”. Maybe the doctor didn’t want to overload me that afternoon but I was told nothing about this rare cancer and simply sent home with an information leaflet.
Naturally, I wanted, well, needed, to know as much as possible about bile duct cancer and spent hours searching the internet for anything and everything. It all made for rather dismal reading and left me feeling fearful for my future.
I decided to focus on how the cancer was affecting ME, not the statistics I was reading
What I really longed for, was to connect with other people who were also going through this or those who had survived their diagnosis. Somewhere where I could read about their experiences or talk to them and hear about their journeys. Unfortunately, there was very little, if anything. There are some wonderful chat forums on Cancer Research UK and Macmillan websites and I found these really useful immediately after my diagnosis for information on general topics but I struggled to find anyone diagnosed with this particular rare cancer.
I must point out that I am surrounded by love and support from family, friends colleagues, and even old school friends and I consider myself so blessed for this but I still felt completely alone and this impacted massively on my emotional well-being, especially for the first few weeks.
People tell you that they can’t imagine what you are going through. I’ve said the same myself in the past. The truth is, no, they don’t. With all the best intention in the world, it’s not the same as talking to those going through the same as yourself.
Eventually, I carried out a #cholangiocarcinoma search on the social media platform, Instagram, and found accounts of people who were fighting this type of cancer and made contact with them. I can’t tell you how supportive they have been to me. They were further along with their journey and were able to share their experiences with me and offer some much-needed advice, which I have found invaluable.
I don’t know how I will respond to the chemo I am about to start or what my outcome will be. I don’t WANT to know. Right now, I’m feeling well and strong. I don’t care about statistics. This is ME and I refuse to be seen as anything other than someone who is living, in fact thriving, with cancer.
I, for one, have every intention of fighting this tooth and nail…..and win!!!
Much love and strength,