End stage bile duct caner and secondary liver cancer

Hello-i just wanted to know what to expect towards end stage bule duct cancer and secondary liver cancer. My mum is now home, as its her wish to be at home and not in hospital when the time comes. 

Recently her feet and legs have started to swell up along with a swelling of the right side of her abdomen-weve been informed that this is the progression of the tumour and that we can expect other things to follow-BUT they didnt tell us what to expect. Does anyone know what we are likely to see and experience now and what should we do to support and care for mum from now on-any advice no matter how small will be greatfully appreciated.

Thanks

Karen

  • Hi Karen

    I am so sorry to hear about your mum. I do hope you are able to make her comfortable with all the support that both you and she need. 

    I am sorry you have waited so long for a reply - this is a rare cancer and I don't think this is a very active group. I am about to say sorry for a third time (this is becoming a habit) and say I know almost nothing about end stage bile cancer. However, I know someone who does. You could have a look over this thread where a very similar question was posed just last year. 

    https://community.macmillan.org.uk/cancer_types/bile-duct-cancer/f/10/t/97229

    I hope this is at least a small help. Trying to get answers out of doctors and nurses about what is likely to happen is very hard. I don't understand why - I just know this to be so. 

    Good luck - and lots of love and hugs xxx

  • Hi Karen,

    Sorry it is such a cruel time for you and your lovely mum.

    If you read my profile and activity I had reached out regularly for advice as to my mum and some very helpful responses which might be of some use to you,  I am sure you know of the cc foundation website also?  My mum's primary was gbc and then bile duct cancer, my mum passed on 17th February 2017.

    I totally understand what you mean, getting advice was near impossible, especially around things like appetite and pain relief, the daily advice.  My mum was never a pill taker and this new world was very frightening for her and for us all.  

    It is so very hard when the person you love most in the world is asking for help and you are contacting and coming off the phone none the wiser.  I have never felt so futile.  I found my mum's Specialist Clinical Nurse to be actually the best point for support.  


    My advice for what it is worth would be to bother people, especially about pain medication.  

    I am here to talk or private message or whatever if you feel any help xxx

    Honestly thinking of you Karen and your mum.

  • Hello Karen, 

    We had been messaging for quite a while but hadn't heard from you so was hoping things were going well for your Mum. I'm sorry to hear that her illness is approaching end stage and glad that you managed to get Mum home which is what she wanted. 

    As you know I nursed my Mum at home until the end so can tell you a few changes that occur as the disease progresses. The main one in my Mums case was constant vomiting what looked like coffee grains, also loose bowel movements the same. Sorry to be graphic. Eating was impossible, it dwindled to sips of water only and my Mum was unable to leave the chair. 

    She quickly got weaker and weaker until she died, at the time I was unaware of the change of breathing pattern that signifies death...Cheynes Stokes I think it's called. I really am sorry and hope your Mum is not in any pain, if so it can be controlled very well by MacMillan nurses which I think you had coming in. 

    As I said many times you have been a wonderful Daughter and could not have done more, sending strength at this very difficult time. 

    Anne

    Anne

  • Im sorry i havent been able to respond but its just been a difficult few weeks-unfortunately mum is now on a syringe driver for pain and nausea control-oxycodone and metoclopramide. But this has left her feeling more fatigued, tierd and really down. She doesnt feel too good at the moment, often complaining that she has a heavy feeling over her heart and feels down, like theres a burden over her and shes lost control of her limbs-has anyone come across this before?

    Also the metoclopramide doesnt seem to be controlling the vomitting-shes on a stat dose of levomepramzine but she hasnt taken it yet as she keeps saying shes had enough and doesnt want any more medication.

    The vomitting wont stop, mum is alway retching, feeling unsettled and down-i dont know what to do-weve had the doctors and mcmillan nurses in everyday for over a week and they havent managed to get things under control-what should i do? What can be done to help her?

  • Dear Karen,

    I have not been on this thread for a long time, I reached out to people in 2015 when my mum was diagnosed with this terrible disease. She passed very peacefully in a lovely hospice in November 2015, we were all with her and for the last days we just sat round her bed reminiscing and playing her favourite music. 

    I know what you are going through and it's not an easy time, for me I coped knowing that mum had, had a good life and had spent time with us all, I wished she could have been here longer,but I had her for 52 yrs longer than a lot of people have their mums,but she was only 74, we still all miss her so much, but I'm sure she is looking down on us.

    These last days with your mum are precious, even when you think she can't hear, I'm sure she can they say hearing is the last sense to go. Hold her hand,wipe her brow and tell her how much you love her.

    No matter how old we are, we are never going to be ready to lose our mum, take care God bless

    Marjory xx

    Donmar
  • Totally understand that you wouldn't have time to respond, your Mum has to come first not replying! Unfortunately the constant vomiting was unable to be controlled with my Mum too...no amount of anti sickness medication made any difference. She was also on a syringe driver for pain and had no control over her limbs and couldn't stand. 

    I am really sorry you find yourselves in this awfully sad situation and can only second Marjorys lovely post, to spend all time comforting her and saying how much you love her. We are never ready to let go of our Mums no matter what age and somehow never think we will lose them, in spite of the signs. My Mum was my guide and told me I would have to let her go soon in the early hours of my "night shift" with her yet still I couldn't comprehend. Maybe there is nothing practical that can be done other than to relieve pain but that doesn't mean you aren't a great source of help just by being there. 


    Sending you and your family my heartfelt wishes for peace x

    Anne