Welcome to Cancer Chat Mark

I am so sorry that your dad has been diagnosed with cholangiocarcinoma it must be a real shock for you and his family and as you say it must be strange to see him still riding his bike and having a good appetite. I hope he is feeling ok after receiving the news.

We have some in-depth information on bile duct cancer on our website here which may well be useful to you. It includes a section on treatment for example which may be of interest. As you say, it is a rare cancer but I have had a look on our forum for you and I have found a few forum threads from other members who have been affected by cholangiocarcinoma before. For example, [@Sparky79]‍ whose dad was also diagnosed with bile duct cancer posted a couple of months ago here so feel free to respond if you wish. It helps sometimes to talk to someone who is in a similar situation. If you type "cholangiocarcinoma" or "bile duct cancer" in our forum search, you will be able to see all past threads on the subject and to respond to any that might be relevant to you.

If you live in the UK, our nurses are only a free phone call away on 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm.

Best wishes,

Lucie, Cancer Chat Moderator

Good Morning All

sorry to hear your news Mark ️

Sorry I haven’t posted in a while but just to keep you all updated is that my Dad is still with us but he has deteriorated over the last few weeks. He’s now basically bedbound & incontinent with carers visiting 4 times a day.

He’s been provided with a hospital bed at home which helps him with the bedsores etc and manoeuvring within the bed. It’s heartbreaking to see him going downhill so quickly and I don’t know how my Mam is doing everything she is doing especially during the night when no carers are there. I’ve sort of come to accept he’s going to lose his battle in the next few months and probably won’t make Xmas this year, if only we knew that last year. 

Hi there

my mum has been diagnosed with the same she is 84 so no real options symptoms started early August and now she is days away from passing away it is very aggressive she didn't even get time for a biopsy to determine if chemo could help 

I wish you luck with your Dad and hope he doesn't deteriorate as quickly as my mum has 

Take care 

Anything new dear ? 

Hi Mark,

How is your dad?

My Dad was diagnosed with CC in January and has had one stent placed, he isnt eligable for chemo as liver function poor. So far communication overall has been poor regarding prognosis other than being told it is terminal and now my dad has delined further procedures due to poor success odds. I feel time is slipping away. 

Such a cruel cruel disease.

Hi 

i know you’ve not posted anything since March but my mum is in the same situation as your dad, stage 4 bile duct cancer that’s spread to her lymph nodes too, she was told treatment not available because of her poor liver functions & has a few months. She’s okay in herself, lost lots of weight, her appetite is very poor & she vomits nearly every day. It’s awful seeing my mum like this she’s been in bed for a week as she can’t make the stairs anymore. 

Hi Mark,

So sorry to hear this. I lost my father to cholangiocarcinoma two years ago so I know what you are going through. My father was a fit and healthy 70 year old and it all happened so quickly. It is a very difficult cancer to detect apparently and was missed on several occasions by our GPs. The only symptoms my dad had was diarrhoea and a sore throat initially. However within a very short space of time he lost a tremendous amount of weight and became jaundiced. The doctors still did not find the cancer and it took a month of tests to finally find it. This all happened over Christmas. By the time they found it, it had already spread to his lungs and he died a natural death at home 11 days later peacefully. He didn’t seem to be in pain and apparently there is not much pain associated with this type of cancer which was some consolation.

My thoughts are with you at this difficult time and please feel free to ask me any questions if you wish.

Hi. I'm really sorry I have not posted in a while. We sadly lost my dad in january so have not been able to bring myself to get on here.

I really hope that  your dad had a better out come?

I'm struggling ita so hard right now, I'm thinking about maybe seeing a medium. 

I hope you are holding up ok, it's hard but dad wouldnt want you being down

Take care

Mark x

Hi just wanted to say thank you for your kind response . Sorry I didnt answer you. Dad sadly lost his fight in January. He passed at a hospice  with us all present in no pain but I'm finding it hard  to erase my last memories of him.

On sure you felt the same. I just miss him so much

Kind regards

Mark x

Thank you for your reply. It’s still early days for you Mark. I was in total denial for a long time even though I saw it all happen in front of my eyes - I was in some sort of strange bubble maybe because the reality was too painful and I couldn’t let myself go there. I used to think that cancer would never touch my family which is so naive really. I don’t take anything for granted these days. Don’t let people tell you how you should feel, grief is personal. Some unkind person told me I should be over it by now but I never will get over it. I am learning to live with it and I have to say that I have more happy memories than bad these days - for example if a hear a song I knew dad liked on the radio, it tends to make me smile instead of cry. My dad always said to never forget the good times and that’s what keeps me going. What I’m trying to say is that it does get easier in time, be kind to yourself and I hope you find some peace through all this.

All the best,

Rachel