Topic: Husband just diagnosed in November.

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.

Re: Husband just diagnosed in November.

Nancy -
Welcome to the family....no one ever wants to be a part of. I am sorry that so much had been heaped on you lately. Sounds like you both have been through the wringer already.

I am a Home Health nurse and work closely with our hospice team. The "Right" time for hospice is whenever you and your husband feel ready for it. The technical definition for hospice is when someone had six months or less to live under the "normal" course of the disease. That does not mean it has to be 6 months, lots of people can go longer.

Hospice changes the goals of your care. Instead of quantity of life it becomes quality of life. Their goal is to keep him comfortable and at home with all of the support that you might need. Includes nursing care, someone to help with bathing, chaplain for spirituality, social worker to address any needs or complications and some sort of complimentary therapy....ours offers aroma therapy, massage and music therapy. There are volunteers to come sit with him so you can get away.

They really are there to treat the symptoms no matter what they are rather than the disease. If he has pain they treat the pain and not worry a lot about the cause. Nausea, Shortness of breath, any of that....they treat that. The nurses are on call 24/7 so there is ALWAYS someone to talk to. If he gets too difficult to care for at home, they can help with finding the right place for him.

I applaud yours and his decision to at least talk about it at this point. And don't ever worry about how long your posts are....some of get wordy (me at times) and we are always here to help anyway we can. I hope I answered your questions without being too blunt.

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: Husband just diagnosed in November.

Hello Nancy, Welcome to the best little club in the World that no one wishes to join. I am so very sorry for Frank and you both have had quite a plate full already. I believe you have made the correct and wise decision to have Hospice come talk to you. I had Home Hospice for my husband and they are terrific beside the fact they will become your best friends. They will ease up everything for you and see to it that he is kept comfortable. You mentioned you do not know what to expect? I don't know if you are ready for this but when you are...I have a 1 page very informative article that is called When the End is Near. Please e mail me if you would like a copy. I am one of those that believes the more we know and understand the less frightening everything is. Wishing you the very best and be very strong, You never know how strong you are until "strong" is the only choice you have!

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: Husband just diagnosed in November.

Hi Nancy,

I too want to welcome you aboard.  No one wanted to be here, but it is the best place to be when dealing with this disease.  I can't really add much to what Kris has  said as she has done a good job with the information she has shared with you.   You will find some of the kindest, most supportive and helpful people here as we all know and understand what you are dealing with and will be here to help in any way we can.   I am sorry you need to be here, but so glad you found us.  I am hoping for the best for both of you in dealing with this disease and all it involves.   I'm sure hospice will guide you and help you with the choices you will need to make.  To me, I think the most important thing is making sure that  Frank is not in pain and kept comfortable.  As Kris mentioned, at this time I think quality is more important than quantity.

No post is ever too long.  Any thing you need or want to say or ask  is important.  Take care and know that we are all here for you.

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: Husband just diagnosed in November.

Dear Nancy, This is a supportive website and I encourage you to write, write and write more.  I found this support group in 2013 after being diagnosed with the same type of cancer. I will be 63 next month and mine is Stage IV, inoperable, lymph node metastasis.  I hope you will reach out to find comfort here and anywhere else you feel comfortable.   The members of this site gave me information about chemo and now I am gathering information about hospice. I have a doctor's slip for hospice to evaluate me.  I am to the point where I seek quality and not quantity of life.  I wish you strength during this time of sadness.  Please continue to write! Please feel free to write to me, too! Sincerely Pat from Linden, MI

Re: Husband just diagnosed in November.

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!

Re: Husband just diagnosed in November.

I just sent the list to you. If you go to my picture on the left of a post and above it you see Lainy? Just click on that and it will take you to an email that you can use from the site. If you have any questions or just want to mail chat I am 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: Husband just diagnosed in November.

Hi Nancy,

I just wanted to welcome you to the board and to say how sorry I am that your husband has been diagnosed with this.  It's all been said above - there is always someone that can support you here.  Never apologise for your post whether they are long, short or in between - post away and we will listen.

x

Clare

In the stars now . . . .