Topic: New here. Diagnosis July 2012 last stages now

Hi all

My husband was diagnosed in July 2012, was eligible and had surgery in July. He was also diagnosed with another primary cancer (lung) and that surgery was in December 2012. Radiation followed in January 2013 for the cholangiocarcinoma. Reoccurrence confirmed in December in lympnodes and liver.

Where we are now. He is home with hospice, doc said weeks vs months left. Ammonia levels high and causing night terrors. Taking lactulose to keep levels down as he was incoherent and having delusions.

Help!  That's all I can say.  My beautiful husband is 60 yrs old. We've been married 31 years and he is the light of my life.  I am sad, afraid and sick at heart.

Linda

Re: New here. Diagnosis July 2012 last stages now

Linda -
So sorry that you had to join our family. It has been without a doubt a tough struggle over the last year and a half for both of you. I am glad that you have hospice on board already which will help things tremendously. Be sure and ask what services are available if you haven't already. The hospice I work with has volunteers to spell you if needed and complimentary therapy such as massage, aroma therapy or music therapy. Also if you start having any issues at all ask you social worker for help.
As far as his night terrors and confusion there are medications other than the lactulose that may help. Sometimes medications such as Haldol or Seroquel can assist with managing all of that. They are anti-psychotics that are often used in this situation. Even risperidal may help too. Be sure and talk to you hospice nurse and get there help.....that is what they are there for.
Remember we are always here and willing to lend an ear always.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: New here. Diagnosis July 2012 last stages now

Linda, we are all in this together.  I have been married to my wonderful husband for almost 43 years and he is 63 years old. I can barely remember my life without him. We were both teenagers when we met. He was diagnosed on Thanksgiving Day in 2013 and we were told he had 6-9 months. His cancer was very advanced when discovered and he is not a candidate for surgery. He has chosen not to undergo any treatments that might make him feel sicker than he already is. I wish he would fight for a few more months, but I am being selfish. All I can say is hospice has been a huge blessing for both of us. They really listen and act when you need something. Right now my hubby still has good days, but soon I will be going through the same things you are. My heart breaks for you. Hugs, Nancy

Re: New here. Diagnosis July 2012 last stages now

Linda, sorry I have to say welcome to our family, but here you are and we are here to help! My husband was on Morphine and started to get night hallucinations and nightmares. He was put on Haldol by Home Hospice and it worked great. I know how scared you are and some of it is due to the
unknown. I feel the more we know the better we handle things. I do have a list of the 10 Signs the End is near but will only email it if you would like to have it. I am wishing for comfort for your husband as that is #1 and a pain free journey. We are all here for you!

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: New here. Diagnosis July 2012 last stages now

Hi Linda,

I agree with the others that there is help there for you and your husband.  Controlling any agitation or hallucinations can be done and that will make it less distressing for you.  My sister was much calmer once we got her agitation and confusion settled.  She was initially on injections but the pump that gave her a continual dose of several mess including morphine and haldol was a godsend.

X

Clare

In the stars now . . . .

Re: New here. Diagnosis July 2012 last stages now

Thanks for the welcome and information. Yesterday and today he is pretty much sleeping. Hasn't gone to the bathroom since this morning and his urine was copper color.  Not eating much, maybe a spoonful here and there. The lactulose which is supposed to cause diarrhea hasn't done anything yesterday and today. I had hospice back in 2008 for my Mom here at my house and am remembering some of the "signs". Definitely feeling lonely tonight.

Re: New here. Diagnosis July 2012 last stages now

Dear Linda,

I am so sorry for what you are going through, but you have found a good place for help and support.  Reading your posts, I can feel your sadness and pain.  My husband was 62 and we had been married 41 years, so I do understand how you are feeling.  Since you are already familiar with the signs from your experience with your mom, you know what to watch for and I'm sure it isn't easy to go through this with your dear husband.  When you are feeling sad and lonely, we are all here to listen and support you as much as we can.   None of us would chose to be here, but I'm sure all would agree that we are all glad we found this wonderful, understanding, supportive "family".

Take care and let us know how things are going.

My thoughts and prayers are with you and your husband.

Love & Hugs,
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: New here. Diagnosis July 2012 last stages now

Hi Linda. Welcome to the site. Along with what others say sorry you had to find us and my heart goes out to you guys. Blessings, strength, and hope to you all and keep us updated on your journey and feel free to ask anything. Try and take care.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: New here. Diagnosis July 2012 last stages now

Hi Linda,

I am very sorry to hear about your husband. I can tell you that we all care and will offer any support you may need. Bless you and your dear husband.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New here. Diagnosis July 2012 last stages now

As others have said, welcome to the site but so very sorry you have any reason to be here.  We are here for you at this difficult time.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New here. Diagnosis July 2012 last stages now

Hi Linda,

I'm so sorry. I only recently traveled the road you are on. My husband was 58.

Other posters have given you good advice and words of friendship and comfort and I cannot add much to that other than to say that my thoughts and prayers go out to you and your husband.

If your husband is able to talk, please do make a quick video with your cell phone or iPod of the two of you saying "I love you" to one another. You will cherish having his kind words to you, and yours to him, later.

I wish I'd asked my husband what sign I could look for from him once he was gone. Questions like that I wasn't even thinking to ask as we dealt with the practical emergencies before us, but I wish I had.

Our community is wrapping its arms around you and your husband.
Margaret

Re: New here. Diagnosis July 2012 last stages now

Margaret, I have a sheet that tells you what signs to look for from your husband and sign that will let you know he is around you. If you are a believer he will come! If you like I can email you the signs through the CC Site.

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: New here. Diagnosis July 2012 last stages now

Thank you Lainy. You've sent me the list and it was indeed helpful.
Margaret

Re: New here. Diagnosis July 2012 last stages now

Update.  My sweet hubby is still with us. I made the decision to stop the Lactulose as it isn't helping at this point and makes him vomit. He is becoming more withdrawn and less conscious.  However, there are moments when we say how much we love each other.  I can't imagine life without

Thanks everyone for the welcome responses.

Linda

Re: New here. Diagnosis July 2012 last stages now

Linda...know that we are with you.
Hugs 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: New here. Diagnosis July 2012 last stages now

Thinking of you right now Linda as you both go through this. We are all here for you.

Hugs,

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: New here. Diagnosis July 2012 last stages now

Linda,
Your love for each other is beautiful. Glad you are together at this time. Sending you wishes for comfort and keeping you in my thoughts.
Much love,
Margaret

Re: New here. Diagnosis July 2012 last stages now

Linda,

My thoughts and prayers are with you both.

Love & Hugs,
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: New here. Diagnosis July 2012 last stages now

Linda;

I am sorry for what  both of you are dealing with.  So many treatments and surgery.   My heart breaks.  He is blessed to have you.  We know it's not easy.
I pray for you and for all others who have lost loved ones.

Re: New here. Diagnosis July 2012 last stages now

Thinking of you and sending you both loving vibes, Linda.

Julia xx

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

Re: New here. Diagnosis July 2012 last stages now

Linda,
You and your dear husband are in my thoughts. May he continue to find comfort in your loving hands.
Willow

Willow