Topic: What to expect?

We've been watching this site for awhile but remained quiet - our Mom was diagnosed over a year ago and told she'd likely have less than 6 months.  She chose to have a stent as her only form of treatment and we feel blessed she has done as well as she has.  But her time is coming now and signs of liver failure are here.   It was like false security with how well she was doing and it is almost like the initial shock of diagnosis is back.  She is still at home but might come stay with us prior to inpatient hospice care.  I don't want to open any wounds or cause anyone pain but if there is anyone who is comfortable enough to share what to expect now and what we can do to help her be comfortable I could really use it.  We have children, too so I am hoping to be as well informed ahead of time so I can make sure they understand as best they can.  Thankm you and bless you.

Re: 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

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: What to expect?

Dear Careforher,

I lost my dad last December to CC so I know what you are going through right now with your mum. As Pam says, this is not an easy journey but we are all here for you. Please feel free to ask any questions and we will do our best to help you if we can.

I also posted quite a bit about my dads experiences towards the end of his journey and you can read about them here -

http://www.cholangiocarcinoma.org/punbb … hp?id=3623

If there is anything specific that I can help you with regarding his experiences please just ask. I have nothing but good things to say about the hospice staff and the care that they gave my dad during his last days. They took great care of dad and made him as comfortable as was humanly possible. He did not suffer a lot of pain as they had meds for him when ever he needed them and they managed to control it very well.

I will keep you and your mum in my thoughts.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: What to expect?

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.

Re: What to expect?

Dear careforher....I would like to follow everyone else in welcoming your.  You have already been given excellent advise.  I would also like to add the use of the search function re: Palliative care.  The category "website" will also allow you to peruse some helpful information.
I am glad that you have found us.  We understand and we care and we are here for you.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: What to expect?

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.

Re: What to expect?

When it is quick (and it was for my Dad) it can be a bit of a shock even though you knew the inevitable. In my opinion, quick is good. No good comes from lingering. I will keep you and your family in  my thoughts.

Re: What to expect?

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?

Re: What to expect?

Hello Dad's daughter. It sounds like your dad really needs the stent. One a stent is put in  and the bile can then flow like it should the jaundice will leave (slowly) in a few days and your dad will start to feel good again. When the bile cannot flow it can cause tiredness, jaundice, no appetite and itching. If you go to the top of the page to the search engine and type in stent or jaundice you will get a ton of posts to look at. As for Hospice your Oncologist will advise you when it is time. What does the Oncologist say about his diagnosis? If nothing is being done for him have you sought out a second opinion? May I ask where you are located? Good luck on the stent.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What to expect?

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

Re: What to expect?

Thank you for the quick responses. My dad has an appointment today to find out more about the stent. I know he is worried that it will more than likely require a hospital stay -- he had surgery a year ago to remove his gall bladder, bile duct and part of his liver; he had radiation and xeloda following his recovery.  He had to have surgery again this January for a gatric by-pass. The surgeon said there was a lot of damage from the radiation and there was so much scar tissue he had to do the bypass on the opposite side of his stomach.  Dad had tried the Gemzar and Cisplatin but he couldn't handle it. There is phase 2 trial at University Hospitals in Cleveland which would require him to drive an hour downtown.  He would like my dad to consider that. My parents live in Geneva. My dad has trouble driving that far-- he can't go that long without a bathroom.

I will continue to search this site for information.  It really is awonderful place for support and information.

Re: What to expect?

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

Courage is being afraid but going on anyhow.
              - Dan Rather -

Re: What to expect?

I can't add anything to what's already been said but I wanted to say to both careforher & dad's daughter how glad I am you are both here & that you & your loved ones are very much in my thoughts.

My best wishes to you both.
Julia

"Time may be a great healer, but it's a lousy beautician."