After more than two years "lurking" around this forum, I have finally decided it is time to post so here goes. I am 53, live with my husband in Devon, and have grown up twin daughters. I was diagnosed with cc in October 2010 - not a great number of symptoms but just enough to know that everything was not as it should be. Abnormal liver function led my GP to request an MRCP, which gave us the diagnosis you are all so familiar with. I know that I was actually quite fortunate to get a quick diagnosis, but I still recall those early days as pretty difficult. Our healthcare system is a bit different here in the UK, and I found myself referred to a hospital with an upper GI cancer specialist team in Plymouth. After more scans, they told me that they thought I was a candidate for resection, and of course by this time I realised that they were magic words to a cc patient.
Surgery took place on 10th November 2010 - nearly 9 hours, during which time they removed the left and caudate lobes of my liver, bile duct and gallbladder. A new bile duct was fashioned from a piece of small bowel. I had a pretty good post-op recovery, although my wound took many weeks to finally heal. As you might know by now, post surgery chemo is not standard in the UK. I was considered for the BILCAP trial but they decided that the risk of blood clots for me was greater than any potential benefits.
I went back to work part time at first, and then full time after a few months. The first year after surgery was very challenging mentally - it seemed I was waiting for the cc to come back. But I have learned how to live with that now, and I have just celebrated two years since the surgery. I am only having annual CT scans now - next one is due in February.
My cc journey has been, and continues to be, one full of people who have never heard of this horrible disease, so I am committed to raising awareness and to helping raise funds for research into cc. Who knows what's around the corner for any of us?
Thanks to everyone who contributes to this forum. It has been a wonderful source of support and information for me over the last two years, and I hope it will continue to be so!