Hi Everyone,

I am new to this forum and, I have to say, I have been so very moved/ inspired/ saddened/ comforted by the all posts I have read! It’s been such a whirlwind just sitting here! I want to share my story in the hope that it may open up my emotions further – I fear I have been caging everything inside me in case anyone should see how much I have been suffering lately. I also hope to maybe find some support from those in a similar situation to mine as at times it can feel quite isolating. I apologise in advance for the long post.

My story goes that in July 2015 my father was diagnosed with stage IV inoperable cholangiocarcinoma (bile duct cancer). My father is in his early 50s, was receiving no regular medication, had no previous/current medical conditions, active and fit – so essentially a superman in all of our eyes - compounding our complete shock at the diagnosis. In fact he was completely asymptomatic just before he was admitted to hospital for investigation of gall stones! He has had many procedures since his admission to hospital, including the insertion of numerous tubes directly into to bile ducts to aid bile flow. He has lost an enormous amount of weight, he is yellowed with jaundice and was unable to leave to hospital. He has since been moved to a hospice for rest-bite which has done him a world of good. They are doing their best to take care of him and is now more himself, able to hold conversations, go for walks and even leaves the hospice for short periods.

Things started to look like they were heading in the right direction until we had the family meeting at the hospice. They informed us in a rather gentle fashion that he may never be well enough to receive chemotherapy. He is not eligible for the operation or radiotherapy due to the location of the tumour. We have investigated and contacted directors of relevant clinical trials with no positive responses. There are essentially no other options.

My father and my family are keeping positive – but I fear that it boarder lines on denial. I full heartedly hope and wish for my dad to get better, but the hospice has advised we spend as much time together as we can. However, this advice seems to have fallen on deaf ears. To clarify my father is in Ireland and I am living and working in England. My dad wants us (his children) to get on with our lives as normal. My mum insists she can do everything herself and is planning things that may not be possible in a way that worries me. Even I have felt it easier to pretend that everything is ‘fine’ and ‘back to normal’ – until I spoke to my work supervisor who encouraged me to think about how I’m spending my time (trying to get back to work ASAP) and not allowing myself to have regrets down the line. He speaks from his own experience and it has honestly spooked me. Everyone says I should do what I want or need, to follow my heart – but I have no idea and I am heavily influenced by what my parent want me to do. Work is fully supportive of whatever I choose and I have no husband/children etc here in England. I feel lost and guilty following that conversation. Has anyone felt this same opposing pressure from their family? I’m just trying to make them happy.

I don’t know if all of this made a huge amount of sense, I think this is the first time I am directly facing all of this and it is certainly the first time I tried to put it into words.

Thank you for listening X