Cholangiocarcinoma

Dear Diana,

Welcome, but sorry you had to come here. You have already been through so much, but know that you have come to the right place as we have all been there and truly understand what you are feeling.

It sounds like you are dealing with a lot of other issues with your husband besides the CC. Hopefully you will get some answers soon and be able to go from there. Second, third and even more opinions are a good thing. Also finding a doctor who is familiar with and has dealt with this type of cancer.

The help and support on this site is phenomenal. Come back often and let us know how things are progressing.

Take care.

Love & Hugs,
Darla

Diana,

You will need outside help in order to keep your health, job and sanity. I hired a companion and often extra caregivers to supervise my Dad in addition to moving him to assisted living near me. It is expensive though..sometimes my sisters would come from out of town to relieve me when I went on vacation. He had long term care insurance which covered a majority of the assisted living. This wasn’t a nursing home so nursing home or in home nurse may be more appropriate. Also, consider hospice. When we finally signed up for hospice I was really worn down form frequent trips to the ER which were painful and scary for my Dad (who had dementia too). In CA, if prognosis is approx 6 months or less, you can qualify. People often wait too long to take advantage if the wonderful support hospice can provide. If he gets better, you can simply “graduate out of hospice”. It made a world of difference as they brought everything to him, including ordering his meds and handling every little medical crisis. Medicare covered all expenses, down to the depends and meds and medical equipment which was a huge help. I was happy to learn that they they do allow some curative treatments such as antibiotics for infection (oral and topical, not IV) in addition to other symptom management. They do not provide simple supervision though, and it sounds like your husband will need that 24/7. Even with my father in a dementia unit in assisted living and having hospice care and a helper companion, it was pretty intense (I have kids and a pt job too). It was also an honor, I must add. Decisions for the care of your dear husband is so personal so I don’t presume to know what is best in your situation, but I just wanted to share how I literally used a village to give Dad the most care and love during this stage of his life. And I managed to keep my sanity most of the time. With help, I was able to spend more time simply enjoying his company and loving him.

Oh, Dianna, I am so very sorry for you both! You certainly have gone through way more than the usual! Wish I could give you some answers you are looking for but you will probably get them after these tests coming up. I am sure the ONC wants to make sure before he proceeds with answers. Do you have any help from family or friends? You might want to get them involved. I found that the more I talked about what we were going through the better it was. Then when I would get tired I just sent a blanket email to all at night. My husband also had a Whipple and it takes months to recover as it is a huge surgery. May I ask where your husband is being treated? Please keep us posted when you can and you will also find it very cathartic to come here often!