Just diagnosed and terrified

Hi Dianthus and a very warm welcome to the Community but sorry to hear about your diagnoses.

Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different cancer).

This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Bile Duct Cancer support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

To connect in with the group please click on the link below

        Bile duct cancer

…… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.

When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.

You can copy and paste the text from this post into your new post.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow 3 working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.

Do get back to me if you need further help navigating the community.

Hi 

I had pre-cancerous bile duct tumours five years ago. They were removed in a traumatic operation and the doctors were then (supposed to be) keeping an eye on me but in July 2021 it turned out that not only had I malignant tumours but I was Stage 4 (ie with metastases or secondaries). 

The waiting is tough. My stepdaughter (46) waited 8 weeks for a skin sample to be tested - we were all struggling - and it turned out to be Stage 1 cancer.

In my experience, there is no one response. Some people have a horrible time, can't sleep and so on. For others, they function and then are shocked when they face their situation again. I have been lucky in that I have managed to live from day to day. Of course, that is unavoidable when one is Stage 4! Whether being able to live that way is my nature or down to my philosophy I am not sure: I follow the Stoics (Marcus Aurelius's Meditation are a good intro). Others have their faith of course.

In practical terms, the best medicine is distraction. Easy to say, harder to do. Getting out of the house. Enjoying what you enjoy. When things were really tough, I used to let relaxing YouTube videos wash over me. If you are having the first, horrible, response, your GP might be able to give you something. After a paranoid episode brought on by the 7 hour op (and so lots and lots of anaesthetic, morphine and fentanyl) my GP gave me an anti-anxiety drug which was excellent. 

Good luck. Live from day to day if you can.

Best wishes

The waiting for the results of my ct scan are giving me crippling anxiety.  I am the same as you frightened, scared and feel at my lowest.  Trying to stay positive in these circumstances are hard.