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Dad diagnosed with cholangiocarcinoma/bile duct cancer

mo1985
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Hi to anyone reading,

Off the bat, if you're on this or similar forums, I'm sorry for everything you're going through either directly or a loved one. 
 

My dad (73) was diagnosed with bile duct cancer in Nov 20. This was after a wholly unexpected kidney failure some months before that. At that point, he eas suffering from severe jaundice and even with those symptoms, doctors took months to diagnose the tumour. At the time of kidney failure, he underwent surgery to have a stent placed in the duct to alleviate the bile build up.
 

Have done an awful lot of research over the months and have come to appreciate the rare nature of this ugly monster. My dad was told he would have at best, 3-6 months without chemo, 6-10 with. After consideration, he chose not to pursue chemo - on the premise he would rather have 3 - 6 months of a somewhat decent quality of life than 6-12 where he would be taken out for half with the chemo. 
 

Some specialists my brothers spoke to advised that this type of cancer has an incredibly fast development and metastatsis when it really gets going. Up until perhaps 3 weeks ago (7months on from diagnosis, up to a year since he actually had it), my dad was as active as a 73 should be. Taking regular long walks, laughing, eating normally. But within 3 weeks, he's deteriorated to the point he is almost immobile, eating next to nothing and having to take several rounds of morphine for the time he is awake. 
 

As a family, we've come to accept the terminal nature but it's breaking our hearts seeing him deteriorate the way he is. Palliative care teams are fantastic but there is only so much they can do. Especially overnight when his pain is excruciating. We've been advised that end of life is now nearing and all we want to do is to help relieve his bloating in the stomach, have him eat and be able to laugh again.

 

im not really even sure why I'm posting here - truth is this time of night I'm just waiting for him to wake up so I can give him meds and constantly search on sites like this for ways to be a more effective carer. I'd be lying if I said I didn't just break into tears on days I see him go through so much pain. 
 

ive read an awful lot about others experiences and I want to send out as much energy to those of you have that have sufffered, lost or are in that stage. I personally always imagined something like cancer, let alone such a rare type, would hit my family. But cancer doesn't care about who you are. For anyone who is diagnosed particular with cholangio, I can say a few lines. Act fast. Do your own research. As great as the NHS is, they will miss things. Delay scans. Misdiagnosis or not diagnose at all. And with this particular type of cancer, time is your single most vital element. Jaundice and yellow eyes, extreme fatigue, stomach pains - these are all big signs. Go for the chemo. I wish my dad had but he is his own man and we couldn't convince him otherwise. 
 

And whilst I will always be happy to talk to anyone about my experience, I guess I'm also reaching out in case anyone has special tips from their own experiences on how best to handle the next few days/weeks, whatever my father has left. 
 

Sending the most positive vibes and strongest sense love to anyone out there in any suffering, whether directly or through the loss of a loved one. May God/the universe/whatever you believe in, shower you with the ability to manage the sadness

  • Offline

    Hello mo1985 

                            l am very sorry to read of your pain and sad that l can do nothing to change that.

    l am no expert but it seems to me that as a chapter in the book of your life nears completion,you have a choice as to what you will take forward with you as you commence the next one.As with any major upheaval,it provides the opportunity to clear away the accummalated clutter allowing for more freedom of the positives that  can journey on with you.

    Discard the recent short time painful ones and place your focus on a lifetime of loving ones that will provide comfort on your road ahead,and be sure to make sure that all your future destinations are all the better for you carrying them with you.                                   

     l feel very sure that the person who you have held so very special would very much approve ,so please travel forwards safely,

                                       David

                                                                                                               

     

  • Offline in reply to gruntifen

    Dear Mo

    i am so sorry to hear about your dad and what he and all of you are going through. My dad was diagnosed with cholangiocarcinoma in January 2019 at the age of 63, he exhibited the same symptoms as your dad - jaundice, fatigue, as well as feeling cold, no appetite etc. We were extremely fortunate and the cancer was caught early enough to be operable, and he also had chemotherapy. He just had his 2 year scan and we are waiting for the results, and I have found myself back on the cancer forums as I wait and worry. He seems well and hopefully the scan will reflect this, but he naps more than he used to and any sign of ill-health and you immediately think the worst, particularly with this cancer. I am so sorry to hear that your father's cancer wasn't operable, it just seems so unfair doesn't it, why him? Why you? Why this rare cancer? There is very little info out there on cholangiocarcinoma, but I did find some posts on the Macmillan forum in case you find that helpful too.

     

    I understand his decision not to have the chemo, i am the same as you and would have wanted my dad to have it (he did), but it's a lot to weigh up and only he can make the decision, like you say. My dad had chemo after his op because we just thought we'd go for the belt and braces to blast any microscopic bits that may be remaining, but they did say that they can't say how beneficial it would actually be with this type of cancer. If his scan results don't go well and chemo is offered, I think I would want him to do it, but I also wouldn't be surprised if he declined, these are personal decisions that only the person can make and there is no right or wrong answer in these situations. We just want to do everything don't we, but unfortunately we can't take it on for them, as much as we wish we could. All you can do I support him as best you can, and you are absolutely doing that, and I know it isn't easy. I hope that your dad has as much pain relief etc as possible, this is something we struggled with in the period before my dads surgery - he reacted badly to the oromorph and wasn't himself at all and could be quite nasty and it was very upsetting, so if you experience anything similar please try to remember it's the drugs, it's not your dad. We did switch to a different painkiller then which helped. You are obviously going above and beyond to do everything you can to make sure he's as comfortable as he can be, I understand the toll it takes but I hope you can take comfort in the fact that your dad will be feeling your unconditional love and care and it will make all the difference to him. Try to take care of yourself too, you can't pour from an empty cup. I am sending all my love and strength to you and your family, you are facing this together as a unit, you will be in it together until the end, and that togetherness will always endure, come what may. X

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