19/07/2023
Hi, many of you know me as James from TyreAware, from KUFC, or just from being around Kinvara since I was 8 years old. You might have guessed from my absence at work that things are not quite right.
I’ve been given a diagnosis of Cholangiocarcinoma, or bile duct cancer, stage 4 (meaning it has spread, via the lymph nodes).
It was a pretty bleak meeting with my oncologist, who pretty much told me if I wanted to try anything other than basic palliative care, I’d have to find options myself. There was a 5% chance that my cancer would be responsive to immunotherapy, which could give me a better prognosis. I didn’t focus on that, so was amazed to hear after a couple of weeks that I am in that 5%! Fantastic.
But for now, the HSE won’t pay for the drugs I need and have been recommended by the oncologist. The drugs are licensed in Europe for this rare cancer, but not yet in Ireland. Frustratingly, they are given for other cancers and so are in the very hospital where I’m receiving chemotherapy.
As it stands there are no trials for my type of cancer in Ireland, so I fully expect to have to go elsewhere for trials or treatment (most likely the USA). I’m waiting for more test results to give more information on that. It’s so disappointing to not be able to get proactive treatment here in Ireland, but I’m willing to do whatever it takes to beat this.
I’m so grateful for the support of family, friends and even people who hardly know me- so much kindness has been shown already. There are too many to mention, but Noel Grealish and Joe Byrne have been great at trying to get my case heard by those further up the chain. All of the help I’ve had so far is much appreciated, and I’ll probably need a lot more. We’re not at the point of needing to fundraise, although that is very likely soon.
As a family, we’ve set up a website to explain the story so far, where there’s a section on how you can help. Maybe you know someone in the pharma sector, a fantastic doctor, or someone who has a positive story to tell. I’d love you to share it far and wide please. I don’t want people with a similar diagnosis in future to come up against the brick wall I have, so I’m going to document everything. Check out www.jamesfightsback.ie and James Fights Back page, and thanks for reading this long post!
James.
