Living with terminal Bile Duct cancer

hi everyone in dec2016 i was diagnosed with liver cancer 14 days later i had a resection where they removed 2/3 of my liver and gallbladder i was then told at my 6mths visit that they had removed it all and i was cancer free and so on then some 2mths after that i started with the sever itching on my skin where i would rub my feet and toes down to the bone (this did not hurt)as the itching was so intence everywhere else ...well to cut a long story short my mum broke her ankle i didnt like the care she was receiving in the hospital that she was at so i moved into her room to give her 24/7 care all the family did...I was get more unwell every day and  had talk with consultant at my wonderful hospital in oxford and we started on the road to trying to go for a whole liver transplant sadly my mum went into hospital with a broken foot and ended up dying of hospital related Infections IE; septic pneumonia you name it she got it Mum never made it :( by which point i was becoming more ill by the day so they held of till the day after my mums funeral on the 1st december2017 4 days later after loads of tests i was deemed to have terminal bile duct cancer (different from the liver cancer ) again a very rare one like the first one... and because i was so poorly they gave myself 2 weeks to 2 mths max to live...so anyway i came home to die as no chemo or radiotherapy effects the bile duck :( well as you can see i am well past those dates i am 16mths here after my maximum survival i dont know anyone who has this and i have been reading all about this cannabis oil does anyone have any knowledge of using this at all i have been asked by my doctors if I would like to be on the cannabis trials for my pain more so in the evening again anyone had any experience on this front ......even chatting would be helpful xxx

  • My dad has been diagnosed with bile duct cancer, gall bladder, spline and vertebrae cancer. We're still waiting for him To meet the oncologist to discuss his options but he's struggling with his breathing and eating. Anyone have any tips or advice? Feel like I'm doing doggy paddle trying to keep my family together!

  • I am so sorry to hear about your dad. For some reason I got a notification about your post, I don't usually, so felt I couldn't just scroll past it!

    My mum really struggled with eating. It was really difficult but we had to get her to drink calorific drinks as she couldn't face food. The docs provided them. 

    I understand it must feel like you're doing a doggy paddle. I hope you have some support and your oncologist is helpful regarding next steps. Happy to chat anytime x

  • Hi Kate, feels a bit ridixulous replying now but I didn't see this at the time and appreciate your response so much!!! How are you? 

  • Thank you for your reply I wasn't sure if I was going to hear anything as the post was quite old but it was the first thing that came up on google. How is your mum if you don't mind me asking? I've just been searching for information where we're unable to join him for his hospital appointments I feel so isolated because I can't talk to anyone professional about his situation x

  • That is so hard not to be able to join him. Can you give him notes with the questions you'd like answering, or have him voice note the meeting - isnt anyone allowed in with him at all? 

    Definitely check out ammf and get your dad to ask about the calorie smoothies. X