Lainy, thank you so much for the kind and supportive words. 

Pam, thank you too for sharing the flip side of the chemo v. no chemo choice.  I can't even imagine how difficult it is to watch your child fight this fight.  My heart goes out to you. 

Happiest of holidays to you both!  One day at a time...words to live by for sure.  Yesterday was a good day and so far so good today!

Absolutely beautiful, thanks for sharing!
I hope that you have the merriest Christmas possible.

Thank you for your response.  It is comforting to hear that your Teddy passed on the chemo and that he didn't regret the decision. 

She is putting off the decision till after Jan 1.  If she decides not to do it, we will definitely get in touch with Hospice right away.   

We've been very busy in the memory making department with new, monthly get togethers with her family, a rented house/cabin up north with friends for NYE, a trip to Hawaii booked for January and one to Florida booked for February! 

I've been reading a lot of other stories and am so scared about how sick she may get as things progress and how long this will go on.  I'll use up all of my vacation and sick time before March between doctor appointments and our trips...and I know I won't want to work as she gets sicker.  I can't stand the thought of being away from her when she is in pain or scared or sad.  On one hand (and it feels absolutely horrible to say this) I hope it goes fast.  I don't want her to suffer and I have no idea how I will be able to handle it all.  On the other hand, I want every possible second that we can have together, no matter how or where those seconds are, which sounds pretty selfish.   

Also, does anyone else feel like a constant failure??  I can't do anything really to help her...I am borderline useless at work...I rarely have the energy to do or think about anything else besides how we are going to get through this...I feel like I am not there for friends and family even though they have all been so amazingly supportive for us...I try to always be supportive for her but I know I say stupid stuff feels like I just keep coming up short and letting people down.

Hi all, I introduced myself in October.  My partner T was diagnosed with cc in 11/09, was thankfully operable and then went through about 8 months of treatment.  She was having stomach pain this October that the docs were having a hard time diagnosing.  She eventually had a pet scan that showed a cluster of cancerous lymph nodes near her pancreas, which were causing the pain, and a number of other cancerous lymph nodes elsewhere in her body. 

The doc's best guess is that she has a year with chemo (gemzar/cisplatin).  She doesn't want to do the chemo, which is understandable.  Her pain has been under control for the past month or so but has been getting worse this past week. 

I will support her in whatever decision she makes. Saying no to chemo is one thing that she has the control to do right now and I understand how out of her control everything else is with this disease. 

I am just wondering if the chemo might actually make her feel better.  I feel like she is going down hill fairly quickly and I just want her to be as comfortable as possible and have the best quality of life she can while she is still with me.

Her oncologist says that the chemo should help with the pain.  Is this true?  For those of you who have lost loved ones to cc, do you think that the chemo helped or just made him or her feel worse?  She absolutely wants quality over quantity. 

I am so very sorry for the losses and the suffering that so many of you have experienced because of cholangiocarcinoma.  I could really use a little advice from someone who was a caregiver near the end of life. 

Thanks and happy holidays,

Jim, William Beaumont Hospital, Royal Oak.  We live in a suburb of Detroit.

Thanks for responding and supporting! 
Gastro appt was earlier this week followed by an MRI.  She got the call this morning from the oncologist that read her scan (not her normal oncologist) but she had a hard time understanding what he was saying...basically what she got out of it was lymph nodes on the pancreas and PETscan to come.  She has a message into her oncologist to get more info.  I did a quick search online and mostly just saw pancreatic cancer but I know better than to rely too much on that.  About a month after her liver resection, a post-op procedure caused pancreatitis, maybe it is related to that?  Although the current pain has been pretty bad, she says it is nothing compared to pancreatitis.
Trying not to freak out.  Praying for the best, for us and for all of you!

Hello all,
I've been on and off of this site a few times since I learned what cholangiocarcinoma was on Nov 10, 2009 but I think I was too scared to get involved knowing the often poor prognosis of cc. 
The reader's digest version of our story...My partner, Theresa, was 46, extremely healthy and fit, and never sick with anything worse than a common cold.  She had stomach pain which led to the diagnosis of a hemangioma in her liver, which is a benign mass of blood cells.  It was fairly large and the pain was bad enough to have her decide to have it removed.  It should have been a 2-hour laproscopic procedure with at most a one night hospital stay.  1/2 an hour in, the surgeon came out to tell me that he had found a cancerous tumor in her bile duct.  She had 30% of her liver removed and was in surgery for over 9 hours with a 5 day hospital stay.  The surgeon felt positive about the surgery (thank God!) but she had several complications during surgery recover.  In all it was 10 months from surgery till the end of her chemo/radiation treatment.
We are just a couple of months away from the 2-year anniversary of her diagnosis.  She just had a "clean" scan (except for something they want to check out with a pelvic ultrasound but think is nothing to worry about).  The good scan was amazing news as I am sure many of you can relate to, but she has had severe pain in her liver region for a few weeks.  She is now seeing a gastro doc to get to the bottom of this pain.  Even with the good scan, I am still terrified that it is cancer again.   
Has anyone who had a liver resection experienced pain a year or two out from it?  Any thoughts on what it could be?  It is slightly swollen and very tender to touch. 
Wishing good health, peace and joy to all of you!  Thanks for reading...and hopefully responding.