1

(14 replies, posted in In Remembrance)

It has been one month since my sweetheart has been gone. I miss him everyday. I am still waiting for it to get easier. I feel like I am functioning in a fog. I do everything I normally do, but I don't feel like it is me doing it. It is a strange and unwelcome feeling. I wonder how long it will take until I feel like myself again? Today I went out socially (for lunch and shopping with a good friend), so I guess that is a step in the right direction. Some days I don't want to get out of bed!

2

(11 replies, posted in Introductions!)

I am so sorry for your loss. My husband of 43 years died May 8th (one month ago today). He was 63 years old. It was 6 months from his diagnosis to his death. This is truly a horrible disease. Until my husband was diagnosed, I had never heard of cholangiocarcinoma. I pray for everyone on this site and hope you have the support of loving friends and family like I have. God bless.

3

(7 replies, posted in Introductions!)

My husband chose no treatment when his CC was discovered because it was  Stage 4, nonresectable and spread to lymph nodes and possible pancreas and upper GI. He came home from the hospital on December 20th, 2014. He had several good months at home with no treatment. He never complained about pain until about a month before he died. Morphine did the trick but made communication difficult because he was quite loopy.  On March 25th, he entered a hospice home when I could no longer care for him at home. The hospice home was a good choice as my husband needed a two person assist and eventually a mechanical lift to get him out of bed. They did a great job keeping him comfortable. The hardest part was the last week when he was too weak to speak so we didn't know what he wanted. He passed on May 8th and I wish I could say it was quiet and peaceful but if was not. I still feel we show more kindness and compassion for our pets than our human loved ones. I miss him every day. Love you so much Frank!

4

(14 replies, posted in In Remembrance)

We had a memorial service for Frank on Saturday, May 17th, and it was very apparent that I was not the only one who was going to miss him. Over 150 people attended his service. It was a testament to the man he was. I will miss him everyday and it still doesn't seem real that he is gone. Tomorrow my sister returns to Denver and I will be alone. I will be strong for Frank. I feel his presence and it is comforting. Nancy

5

(14 replies, posted in In Remembrance)

Thanks so much for the information and support I have received from all of you. I will continue to pray for those of you still on this difficult journey. God Bless. Nancy

6

(14 replies, posted in In Remembrance)

My dear much loved husband of 43 years ended his journey here on earth early this morning. It is our belief that he is in heaven with our lord and savior Jesus Christ. Frank was diagnosed with stage 4 intrahepatic cholangiocarcinoma in November of 2013. He chose to have no treatment and was brave until the end. My heart is broken, but I have many wonderful memories.

Just checking in again. Frank is once again not eating, drinking or speaking. The hospice team says he is in transition and may not be conscience at all anymore. It is so hard to see him like this. I love him so much but I pray that God takes him home soon. He was having very bad abdominal pain, but his hospice nurses are keeping that under control. Thanks for the support. Pray for us.

Frank was much better today although he still is not eating. He had lots of visitors, got to spend an hour outside in his wheelchair (it was 80 degrees in Chicago today!) and best of all, he got to visit with his beloved dogs, Rocky and Foster. I would say he had a very good day. Thanks for the thoughts and prayers. Nancy

My husband has not eaten anything in four days. He drinks a little. He mostly sleeps. Yesterday he became agitated and tried to get out of bed. He is now sedated and only wakes up briefly. This is so hard. I am bringing his dogs to see him tomorrow. I hope he wakes up a little while they are there. The hospice staff is wonderful, but I am still so sad. I think the time is very near. I took his 91 year old mother to see him today and she is inconsolable. His sisters are coming in from out of town on Sunday. Pray for us. Nancy

Thanks everyone for the love and support. Frank is at a beautiful facility and the staff is wonderful. I still think he would rather be at home, but understands that with the level of care he needs that is not possible. He had a good day today and if he has a good day tomorrow they will put him in a wheelchair and I can take him outside. It is supposed to be in the 60s tomorrow here in the Chicagoland area, a vast improvement. We have had a brutal winter.

I have not posted in a while, but I am always checking in. On Tuesday my husband Frank was moved from our home to the local hospice facility. It breaks my heart that I can no longer care for him at home. He was diagnosed in November and I have been caring for him here since he was released from the hospital in December. He had two strokes four years ago which left him unable to use his right side. Now the cancer has made him too weak to use his left side. I could no longer assist him in getting out of bed and into his wheelchair. I was hoping he could die at home, but I guess that was not realistic. I think he knows that I tried my best to keep him here as long as possible, but it still hurts. Thanks for being here for me. Nancy

Michelle--my husband also has what I call "rally days." I try to enjoy that time with him. We can play cards or Dominoes and it feels like the old days. Then, the next day he sleeps 18-20 hours. Won't eat or drink much of anything. So, as everyone says, this is a roller coaster ride that none of us bought tickets for but are on the ride just the same. I am thinking about you and praying for strength for you and your family. Our children are grown and not living at home so I really feel sorry that your kids have to go through this. My husband was diagnosed in November of 2013. He is 63 years old and we will be married 43 years next month. Take care and God bless.

13

(21 replies, posted in Introductions!)

Margaret. God bless you and your family. My husband has terminal CC and was given 6-9 months at time of diagnosis three months ago. We have hospice care now. I feel so bad that you didn't have a chance to say good-bye. My husband and I talk about what things will be like after he is gone. It is very hard but he finds it comforting that after 43 years I will probably be able to go on without him. I am crying as I type these words because we have been together since we were kids and I don't remember much of my life before him. But like Lainy, we are very spiritual people and believe that we will join God in heaven when we die. But my silly guy tells me all the time that I should look for signs that he is here with me after he dies. And I surely will. Take care. Nancy

14

(22 replies, posted in Introductions!)

Judith, our stories are so similar. My husband was diagnosed in November of 2013. His biopsy confirmed intrahepatic CC. His tumor was large and nonresectable. He has some other health issues, so he decided not to pursue treatment. Hospice care has been a Godsend for us. He suffered an odd bout of pain in his chest that he said felt like an ice pick stabbing him. The hospice nurse was here in less than an hour and with meds he was fine. He has many good days and hours although he sleeps most of the time. He is 63 and we will be married 43 years next month. So far, no other pain and only a few bouts of dry heaves, also treated with meds. I hope you and your husband have amny more good days together. God Bless.

15

(12 replies, posted in Introductions!)

My husband knows the prognosis but chooses not to let it get him down. When the oncologist told him 6-9 months, he said "You don't know me." We have prepared but not overly stressed out about when he will no longer be with us. He has chosen not to have any treatment because the outcome would be the same and he feels pretty good now. Hospice has been a great help and they are really on top of everything. He has had few symptoms, no jaundice, and was diagnosed on Thanksgiving Day, 2013. If you have not involved hospice yet, I highly suggest you do. My husband (age 63) was reluctant at first but now he is happy to see his nurse when she comes. God bless your family during this difficult time.

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

The hospice nurse and social worker visited today. Frank slept most of the day, but did thank them for coming. The nurse will return on Tuesday. He is complaining about shortness of breath, so they may order oxygen. His abdomen is very large considering he is not eating that much. I fear that is why he is short of breath. Could be fluid in the abdomen. Thank you for all the kind words and hugs. This is a very scary place to be and I am glad I found all of you.

My husband, Frank, was evaluated for hospice care today. He was diagnosed in November 2013. The hospice worker thought that this would be the best option for him since he is refusing any treatment (we were told the outcome would be the same) and he has many other health issues. The goal is now to keep him comfortable so he doesn't have to leave the house. Besides the tiredness and sleeping most of the day, he seems pretty good. I was surprised at how many things are available for comfort. Sure hope this works out.

Thank you for all your information. Lainy, I would like a copy of your what to expect when the end is near. I don't know how to email you. Hospice comes tomorrow for an evaluation. I was hoping for some specific info from them. LadyLinden, my husband seems to be in the same place you are in. He has lymph node matastasis also. My husband and I both believe that God is in control and that we will go to heaven when we pass. Our faith sustains us. I have learned to live with the "one day at a time" mantra since his first stroke. I was hoping we would have some good days left. We wanted to visit our daughter, her husband and our granddaughter in Florida in March, but I don't think that is going to happen. We have been married over 40 years and I am hoping for some good days. Ironic, huh? We don't appreciate our good days when we are having them!

Hello. My name is Nancy and my husband Frank was diagnosed with intrahepatic cholangiocarcinoma on Thanksgiving day, 2013. He has decided not to seek any treatment because even though he is only 63, he had two strokes in 2010 and suffers from paralysis on his right side from the 1st stroke and weakness on his left side from the 2nd stroke. He has been confined to a power wheelchair since the 2nd stroke. His oncologist said his cancer is non resectable and stage 3-4. She did not feel like he would survive the treatment. He was hospitalized for pneumonia on Nov 19th. He was in septic shock and his kidneys failed. He recovered pretty quickly from the pneumonia but when, after 7 or 8 dialysis treatments his kidneys were still not functioning, a CT scan of the kidneys revealed a large mass on his liver. A biopsy followed and the diagnosis was made. His kidneys started functioning again and he was released from the hospital on December 20th. He felt pretty good for the first couple of weeks at home, but now he is so weak and tired he sleeps most of the time. He is still eating okay. The oncologist said he could survive for 6-9 months. I see him getting weaker every day and just don't know what to expect. I am taking it one day at a time. He is going to have a hospice evaluation on Wednesday. How can I know if it is the right time for hospice care? What do they do? Sorry this post is so long, I'm just feeling so overwhelmed.