Welcome to James Fights Back

Hi there. My name is James Hastings, and I’ve been diagnosed with cholangiocarcinoma. That’s bile duct cancer for the uninitiated.

Welcome to James Fights Back

Hi there. My name is James Hastings, and I’ve been diagnosed with cholangiocarcinoma. That’s bile duct cancer for the uninitiated.

Receiving a cancer diagnosis is about as shocking as it gets. I’m 41, married to my childhood sweetheart Marian, and father of our three boys. I’ve always been fit and healthy. I run my own business, and I’m really dedicated to our local community in Kinvara. I’ve got big plans for our future; I want to grow my business and support other people to build their business dreams. I want to watch our sons grow into independent young men, and give them the guidance and advice they need to live a full life. I want to build on the work we’ve already done that helps our community to flourish economically and socially.

My plans didn’t include fighting cholangiocarcinoma.

Cholangiocarcinoma is a rare cancer that forms in the bile ducts. Typically, the first sign anything is amiss is yellowing of the skin and eyes, a common sign of jaundice. That’s what landed me in hospital one Friday evening in May, the day before my son Ben’s First Communion. Three stressful weeks later, after a series of scans and painful biopsies, my oncologist delivered the cholangiocarcinoma diagnosis. While the prognosis was nothing less than horrific, everything changed when I learned my cancer IS responsive to EU-approved immunotherapy, which will give me a real fighting chance of beating this disease. It’s the chink of light we needed to keep fighting the good fight.

Life with a rare cancer is like a rollercoaster though. While the drugs I need are available in Ireland and indicated by the EU as the first line of defence for the treatment of my type of cholangiocarcinoma, the HSE won’t cover the cost of them to save my life. To make matters worse, it is really, really difficult to find the information we need to make informed decisions about our next steps about treatment options and how to access them. There is no central repository for this type of information and pushed beyond capacity in our health system, medical professionals are limited in the information they can offer too.

No one should ever have to experience an information vacuum on diagnosis of a rare disease. Once I have beaten cholangiocarcinoma, I will make it my life’s mission to ensure people have access to the information and answers they need to help them make a positive and constructive plan that gives them options.

This is just the beginning of our journey, but you can bet we’ll give it everything we’ve got, and use our experience to make change for millions of others in the future