What to expect?

Dear Careforher,

You can use the search engine at the top of the page and search for my posts under the name  - Cherbourg.

I posted frequently about Mom's illness.  I'm in the medical field and diagnosed my Mom's CC.  Mom lived a year after being diagnosed in May and she died April 3, 2009.

I also posted several times the night she was dying.  Hospice was a wonderful help and I can't say enough about having them as a resource.  They were with us during the pallative care phase when Mom was no longer getting chemo and they were there in the days leading up to her death.  My Mom's passing was for the most part fairly easy and pain free thanks to their care.

It was a year since losing my Mom this month.  It's still hard and a journey I wouldn't wish on anyone.  I can say I do know what you're going through and I will promise that all of us on the site will be here to walk this journey with you and your family.

Feel free to ask anything you need to know.  We'll all help with the answers.

You and your family and Mom will be in my thoughts and prayers.

Hugs to you all,
Pam

I lost my Dad last September. From what I have read on the board, the experience can vary widely. Other than weight loss, my dad was symptom free until about 4-6 months from the end. He had dementia about the last 3 or so months. He just progressively went down hill. He became more dependent on a walker and got weaker until he was in a wheel chair for the last week. His last three days were spent sleeping (probably more of a coma as he never woke up). We had several battles with constipation and bowel impaction.

Hospice can fill you in on the what to look for near the very end, when she has, as Hospice calls it, transitioned. Bur feel free to ask anything you would like to know.

Thanks you all for the welcome and links.  It is much appreciated.  There's been so much to do.  She has been getting hospice at home and will be going right there instead of coming here first.  I am astonished at how quickly things seem to be going downward.  She is at peace though and ready.

It has been a while since I posted.  My dad has been battling this disease since February 09. I don't see him as often as I should-- he was here for my daughter's first communion a couple of weeks ago and seemed to be doing really well. Last week I went to his oncology appointment with him and he had to be wheeled in because he was too weak to walk.  He had blood tests to see if he could go back on xeloda.  The tests game back and he is too jaundiced.  He is now using his oxygen during the day and my mom says he sleeps too much. We were over there today and I spent a few hours just talking to him.  He sent a lot of time sharing memories -- I heard stories I never heard before.  After we got home, I ran out to get some fabric soften and lunch snacks and just sat in the Drug Mart parking lot sobbing.  I know so many people have struggled through this.  My emotions just got the best of me. My mother has been so strong through all of this but it's starting to take it's toll on her. The latest news is that my dad will need a stent, but I don't know if he can handle it.  He doesn't want to go back to the hospital.  He has been in and out of there thiswhole year. The last time was a couple of weeks ago for a blood clot.  How do you know when it's time for hospice?  Could the jaundice be causing him to be so weak or is it the natural progression of the disease? I think that seeing my dad today made me realize that the disease is progressing. I keep holding out hope that he will rebound and we will have a little more time. Will the doctors tell us when it's time for hospice or is this something we should ask for?  My parents do have a nurse that comes twice a week. Maybe that is better for his spirits than to tell him we are getting hospice. He says he isn't ready to "lay down and die."  He wants to "go out fighting."  Any advice, insight?

If he wants to go out fighting then getting a stent would fit that attitude.  When my mother was diagnosed the jaundice and itching were terrible.  She had no appetite and was very weak & nauseous.  That cleared up almost immediately with the successful stent placement.  She had it replaced every 2 months after that with little to no effort from her.  Having that stent was her only forme of treatment - she opted for no chemo & it kept her alive with a good quality of life for over a year.  It was the best thing she ever did after her diagnosis.  She had a life and was reasonably active and independent the entire time.  It is an outpatient procedure and takes less than an hour.  We would go to lunch on the way home right after and she would have an appetite.  If I were you I would encourage him to get the stent and help him learn about it.  She irrigated hers 2 times a day with a prefilled 10 cc sterile saline syringe.  This kept it from getting blocked or infected.  Although she did have it get blocked 1 time - replacement was easy and took care of that right away.  She also did get an infection 1 time from it and had a stay in the hospital with e coli induced pneumonia - so it is not without it's potential problems but the benefit WAY outweighed the risks.

God bless you

if you need a second opinion regarding the stent placement you could try the interventional radiologist I use, Dr. Mark Sands.  He is with the Cleveland Clinic downtown campus.  i have lots of issues with my bile duct and i've been seeing him off and on since last april.  he's very bright, thorough, kind, perseveres even when i feel like giving up, always good for a pep talk!   hope your dad feels better once the stent is in place.   

betsy