Topic: Hello

I am new to this board but have been dealing with my mothers cholangiocarcinoma since February 2009.  She was diagnosed after an episode of jaundice and an ERP biopsy found a tumor in her bile duct.  A stent was placed and she has not had anymore episodes of jaundice.  My mother did not want any further interventions.  She is now on hospice care but she has not yet become jaundice but she eats very little, does not seem to be in terrible pain but is very weak and barely swallows.  She becomes agitated, confused and hallucinates at times but sleeps most of the day.  She is given xanax for her agitation and morphine in very small dosages.  The hospice staff felt because she was agitated she must have been in pain and just unable to express it.  She would just agree to being uncomfortable.  I am questioning how this disease progresses.  It seems once the hospice physician started the morphine she become more lethargic and less responsive.  My father in law died 2 years ago from gastric cancer and he was in terrible pain.  What should we expect?  Is this disease different for everyone?  If anyone has any feedback it would be helpful.  I just want my mom to be comfortable but my siblings are not sure she really needs all the strong morphine.

Re: Hello

Hello and welcome to our site and I am sorry for the reasons of your joining us.  Others may have more answers to your questions but, I wanted to share with you that agitation has been reported numerous times.  It appears to be quite common and has been related to either, low ammonia levels and/or pain.  It is of most importance to keep your Mom comfortable and Hospice should be able to provide this.  You might want to discuss with Hospice whether another medication might be of more benefit, at this time.  I don't believe that you overstep your boundaries by asking questions regarding the concerns you have for the welfare of your Mom.  Also, when using the google search function, top right on our site, you may want to enter the word agitation.  This will lead you to several discussions regarding your particular questions.  It may very well be that your Mom will not experience a great amount of pain as it is not always the case for  CC patients however, if it does become an issue then you are in good hands with Hospice. 
My heart goes out to you in this trying but, so very special time.
Peace and love
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: Hello

Hello.
My Aunt was diagnosed in Nov 08 and passed away this month. She was never in any pain, even at the very end. She also said she was just uncomfortable. Her feeling of being uncomfortable were just the organs swelling and pressing on each other and also the fluid build up in her stomach. The only pain medication my aunt was on was the patch. She did not take morphine. My aunt also ate very little, really just egg whites in the morning and a chocolate ice cream/ensure shake in the afternoon.
This cancer is different for every person. By reading through the discussion board you will see that every persons cases are different.

Hope this helped. If you have anymore questions feel free to ask... everyone is so great on this site!!
If you don't want to post on the board, feel free to email me alempka@hotmail.com

"Love is like the wind, you can't see it but you can feel it"

Re: Hello

I too wanted to tell you how sorry I am for what you're going through.  It is a very difficult journey to take with the ones we love. It appears everything has happened very quickly with your Mom, and its hard to digest things - before the next wave of questions hit. My Dad too was slightly agitated and uncomfortable at times, but I don't think it was 'pain' as one of the last questions I asked him was if he'd like a pain pill and with a clear mind he said no.  My experiences with Dad are much like what Marion has said, it was all about keeping Dad comfortable- and if that meant sleeping, then that was okay.  My Mom really fought this at first, forcing him to get up and shower & shave- thought it would inspire him to stay awake more, but to no avail.  My brother wanted him taken to the hospital every time his status changed. Dad just wanted to sleep, with or without his pills.  With three brothers and a strong willed Mom, we had some heated discussions about what the right steps to take were.  Keep discussions going with your hospice nurse and trust your heart. Whatever choice you make will be the right one for your Mom.

Sending you wishes for strength,

Tess

Re: Hello

Thank you for your replies,  this has helped quite a bit.  Even today she is worse than yesterday, unfortunately, and I have decided to increase her medication to try and help be more comfortable.  I asked about different medications but her hospice nurse said they are all similar to morphine and the morphine is easier to administer as you can adjust the dosages.  Her pulse and blood pressure is good, but it is so difficult to see her so sick.  But unfortunately her urine is very dark.  As Tess mentioned about heated discussions, I wish that we could do that as a family, but unfortunately one sibling is in denial and the other is irrational.  Everyone, deals with this differently, but to me what is important is keeping my mom comfortable and today was not good.  Thank you again for all your best wishes and I send them back to you.

Re: Hello

Hello and Welcome,
Just wanted to say hello. I think your Mom is very lucky to have you. As a patient, I would want to be made as comfortable as possible when my time comes and it sounds like that is what you are doing for her. I can relate to dealing with family. I was an only child but my husband is the oldest of five. I used to complain that I hated being an only child when I took care of my Mom (Alzheimers). No one to bounce ideas off. Turns out it was alot easier than trying to deal with siblings when you have one thats as you say "irrational". Keep us posted on how things are going. You and your Mom will be in my prayers.
God Bless,
Jamie

Re: Hello

I will preface this by saying this was our experience:
Towards the end, my dad was feeling increased pain, though we didn't have any idea of the intensity.  He expressed it as being really uncomfortable and he seemed more impatient.  He was using fentanol (sp?) patches and oxycodone while at home.  When he came down with an infection and needed to be hospitalized, it was there that we realized it was only a matter of days.  He was in a lot of pain, so I had him placed on round the clock morphine drip.  He was much more comfortable, and his agitation was gone.  In retrospect, I wish I had pushed for more pain meds earlier.  I remember my cousin telling me (she had lost her husband to cancer) "Morphine is a cancer patient's best friend."  I saw through dad's behavior that it was true...in our situation.

As for my siblings...my parents and I made legal arrangements (health care directives, Power of Attorney, etc) when dad was initially diagnosed.  Both my parents named me as their SOLE representative.  (Mom was diagnosed with advanced Parkinson's Dis. 5 months before dad's diagnosis).  They also made it very clear to my siblings that this was their decision and their desire.  I do keep my brothers informed with everything that goes on, and, naturally, get their opinion on different things, but ultimately I made/make the decision.  I spend a lot of time daily with my parents...with my mom, now...and we talked about everything, therefore I was prepared to follow through with their directives.

The hard part, then, is I am left alone to provide the round the clock care.  One of my brothers who really wants to be here to help me and my mom, lives in Florida.  One of my brothers has MR/cerebral palsy.  My youngest brother doesn't seem to want to be bothered>he lives an hour away.  Oh well. 

You are doing an amazing job, with all the challenges thrown at you.  One piece of advice...make sure to take a few minutes  (more if you can)  to breathe.  To do something for yourself...a cup of coffee on the front porch, play with the pet, garden, lose yourself in a goofy sitcom (mine was Frasier)...do something for you!  Advocate for the advocate!  As you know, the road ahead will be very bumpy...

As with all the patients, caregivers, survivors on this amazing site, I will keep you and your family in my prayers.  You will find the greatest allies on this site.
Peace be with you,
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Hello

I am truly sorry to hear about your mom's situation. 

When talking to the GI specialist at Stanford, he said that the nerves in that part of the body did not generally signal pain except the nerves that report stretching of the gall bladder. Its one of the reasons CC is so nasty because the only symptoms appear after the tumor is large enough to block the flow of bile in the ducts.  Even then, there is no pain directly from the tumor, rather the pain comes from the jaundice and other effects of the blockage. 

Your Mom is 'probably' not feeling sharp pain. Rather, she is feeling the discomfort and pressure from the effects on the various internal organs. 

One thing to ask about is her electrolyte balance.  Given the function of her organs, she may have imbalance in potassium, sodium, etc. that may be affecting her cognitive abilities.  Anyway, it can's hurt to ask. 

Pat

Re: Hello

If you look under pallative care/hospice care, there are several threads on end stage of this disease and what happens and advice. I am sorry I cant offer more, but as the patient I find these threads stressful for me so I dont read them...but they are there in that section if you look.

I am so sorry you needed to find us. I hope your mom is comfortable and you are absorbing all the love and precious time you have left. I will keep you in my thoughts.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Hello

Hello,

I too am sorry you need to be here, but glad you have found us.  We all know & understand what you re going through. I agree with Kris that your Mom's comfort is most important and to make the most of the time you have left with her. I will keep you, your Mom & your family in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hello

Hi Baby,

My Mom (77) was diagnosed with cholangiocarcinoma in May 2008.  She died on April 3, 2009.  At diagnosis she was Stage IV with mets to the lungs.

Towards the end of her disease, ( in March ) she was sleeping more.  Watch your Mom for facial gestures and watch her hands.  Frowning, or clenched hands may indicate pain.  Mom was slightly agitated every now and then but sometimes something as simple as slightly changing her position or raising her up and moving her pillow would help.

My Mom was still working full time when diagnosed after a bout of pleurisy and a CT to rule out a blood clot.  She had never ever been sick and I don't think she really knew how to describe pain since she had never really experienced any.  She too would admit to being uncomfortable.

I know how hard your road is from experience.  You can search my posts to get an idea of how things were for us near the end of her disease.  But understand this monster of a disease is different for everyone.  You will find there is a time when the patient seems to almost be in two places.  Here in this world and the next.  It's not a road I would have chosen but to be with my Mom throughout this process was a gift.  I know I will see her again and I know she is in heaven. 

Take care of the caregiver.  (That is YOU!!)  Come here often.  You will find some of the most compassionate, knowledgeable people here on this site.  I think this site probably saved my sanity more than once! 

You and your Mom and family will be in my thoughts and prayers.  I will promise you that you will find a depth of strength you never knew you were capable of in dealing with this monster.  Take care and know we are with you on this journey.

Much love and hugs,

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: Hello

I understand completely the difficulty and pain you are going through.  I lost my dad in October 2008 after a diagnosis in Nov 2007.  We found that my dad's hallucinations were caused by the morphine.  He had terrible reactions to the morphine.  I think that once hospice comes in that they pretty much just want to keep them in a sleep state.  Not sure if it's good or bad just my observation.  As the disease progresses to it's final stages you'll start noticing subtle changes in your mom.  In the case of my dad his breathing rhythm changed ever so slightly.  Hospice denied it but the family could see it.  Then his breathing changed dramatically.

My heart goes out to you.  I pray for strength for you during this difficult time.