Cholangiocarcinoma

I can't believe I am writing this but I feel I need some answers. I have just lost my darling father to cholangiocarcinoma last week. He was a strong man up until December, always in the garden, decorating and building things. Unfortunately, due to lockdown and my mum undergoing chemo I never saw him since Aug. I feel so guilty for that now. 
 

I could see on zoom at end of Dec he was ill and by early Jan he was hospitalised. None of us knew why, just he said something was wrong. A couple of days later he called in tears telling me he was going to die. I could not believe it. He apparently had gallbladder and liver cancer. 
 

Days later he came home and eventually he was told he would be stented two weeks later. I wanted it sooner but they said there were no spaces available for the procedure. He came home so jaundiced and weak. He went back to hospital where he was told he would have the stent. After a few more days of us waiting and not knowing and being told on Thursday night he was having the procedure on the Friday morning they called that afternoon  and said that they were sorry but  he actually had cholangiocarcinoma and  it had spread and he had a few days left. 
 

We nursed him at home with help of Marie curie and he left us a couple of weeks later. Every day he deteriorated more so we had no real time as he slept for nearly 22 hours and became progressively weaker. I told him I adored him, but the decline was so quick. I can't get my head around how it happened so quickly. I know about pancreatic cancer having a poor prognosis but never heard of bile duct cancer. 
 

I guess I want to know is how did my darling father not know something so serious was wrong. And I asked the Drs and they said his bilirubin level changed overnight, but surely there must have been other signs.

I am grief stricken. My heart is aching and I can't make sense of it. I never write on forums but maybe someone can help. 
 

I still have my mother with lymphoma awaiting a PET scan. It just feels too much.

thank you for listening.

  • Hi Sapphire21,

    I am so sorry to hear about your father I am sure it is heartbreaking for you. Also your mum is receiving treatment which is another worry as well.

    How are you coping so far I know it is a distressing time trying to make any sense of anything. But somehow you will get through this horrible and tragic time. My lovely wife also had bile duct cancer and she survived about a year and unless they can operate and because it stage 4 it is hard to survive this. 

    Have you any friends and family that can support you? It can be good talking to other people on here who have had similar experiences and I hope you reply at some time. I know it is terrible time for you but stay strong.

    Chris 

     

     

  • Hi Chris

    Thank you for replying. I am so sorry to hear about your wife. I just can't imagine it. 
     

    Both my parents have had cancer previously and although I was upset I still managed to carry on. This time, losing my dad, I am just heartbroken and feel the world has stopped. Everything annoys me and I just can't get my head around him not knowing.  I was with him till he died, but due to being so ill, he hardly spoke. I just chatted to him, not even sure what about.   I just told him that I loved him so much and I cuddled up next to him. 
     

    I don't understand how his cancer spread so quickly. 
     

    I do have friends and family to talk to, but I find it very hard to talk to anyone, writing is easier. 
     

    The thing I miss the most is his arms around me and him telling me it will be ok. This time I know it won't be ok. 

  • Hi thanks for replying.

    I know it must be raw for you at the moment. I understand wanting to hug your dad and it is not being able to talk with him which is really hard. 

    I think you just try to carry on but you probably are walking around in a daze and nothing seems important at the moment. You know that life goes on but you just want it to stop and to go back to when your Dad was well.

    Sorry to ask but have you had your Dad's funeral? 

     I found that I was glad to get through Lesley's funeral and although it didn't make me feel any better, it was a painful obstacle to get over and somehow in my mind it was something to get beyond.

    I really can't give you much advice only my experiences. I am glad that you can write your feelings and over time you'll be able to talk to family and friends.

    Chris x 

  • Hi there,

    So sorry to hear about your dad. My mum has cholangiocarcinoma. Two months ago she was out walking 2 or 3 hours a day litter picking the country roads around our house, now she can't stand unaided. That's the problem with cholangiocarcinoma it's nearly always diagnosed too late to do anything about it. Most cases are inoperable. She has opted out of chemo and was doing really well even a week and a half ago, up and about and in good form. She suddenly nose dived, awful nausea, struggled to even take water, unbearable pain, unable to sleep. She went back into hospital last night, her calcium levels are up and they think there might be an infection related to the cancer. They estimated six months but it looks to me like that isn't going to happen, she's deteriorated so fast. It's horrific and we all feel lost and helpless

  • Hi 

    I wish I could tell you something to help you feel better. I am still completely lost in grief whilst trying to manage family and working life. Nothing seems important anymore and I just feel empty. 
     

    I do not remember much of the good times when we got his diagnosis. I just remember telling him how I love him. I knew it would be hard, but nothing could have prepared me for how I feel. I think I can't get my head around how such a strong man could just disappear before my eyes in 6 weeks. 
     

    I hope you get more time than we did. We were told to make memories , but that was impossible when he was so ill. I will give you only one piece of advice which was given to me... live each day at a time. 
     

    I felt lost and helpless too and I still do. I coped better before. ... I guess just by constantly giving meds, begging him to eat and drink. After I just fell apart. 
     

    Take care and sleep if you can