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Our bubble has been burst, once again!

Posts: 200
Joined: Jan 2010

We have been to hell and back is my saying these days.

We have had so many ups and downs in the last two years it is truly a wonder that we are still here and somewhat sane.. I think anyway.
After being told no transplant then yes transplant, then no again then treatment for the past year to get back into criteria we were told no again. We ended up going to see an Oncologist. he said maybe a clinical trial if the Billirubin gets down to 3 or below!! Billirubin is 4. as of last week. then today while at the Onc. appt again he said that the Billirubin needed to be 2 or below!!! Of course I questioned that and he claims that because of the ascites it would need to be that low. He then suggests Hospice!! I was so shocked and disappointed I couldn't even talk because of the tears.
We get home a few hours later and I get a call from the visiting nurse telling me that the Dr. contacted her company and ordered Hospice!! We had told him that we wanted to talk to the visiting nurse about hospice and then decide when the right time would be. After talking to the nurse we get a call from Hospice! So they are coming tomorrow just for an informational visit right now.
Anyone have any info on this subject and what I might need to be asking? I am trying to keep it together but it is getting harder by the minute..

Posts: 16
Joined: Mar 2011

Reading your post I felt as though I could be reading my own words. We too have had pretty discouraging news lately along with 4 different procedures for esphogeal varices and 4 different liver stent procedures. His bilirubin too, is too high & hemoglobin too low. I too have also been in touch with hospice - as I was advised to do by his oncologist. That advice though was given the intent to be helpful, as there are studies that have shown that hospice & good palliative care can actually extend the patient's life, along with making things easier for the caregiver so they and the patient can focus more on living. Our hospice offers a lot of resources that we can draw upon. While this has been really hard on us and, especially all of these recent episodes(I could write a book on some of those) - we are still making plans and trying to live each day to the fullest. Yes, I am letting him take a few liberties on the diet but not too many. I also understand how hard it is to keep things together and all of the balls in the air. In these last 19 months, I have learned that I am really alot tougher than I ever thought I was - I bet you are too. I know how hard it is to watch someone you love so much be degraded by this awful cancer. It stinks. Hang tough, I know you have really been through alot, and there is more to come. And while it may not be much consolation, just know that there are others out there doing pretty much the same thing. Take care and try the enjoy the holidays as best as you can!

Posts: 200
Joined: Jan 2010

Thank you for your post AEI. I too could write a book on some of our experiences. I do believe we do what we have to do when we have to and that our experiences do make us stronger. However, it doesn't change the fact that this is by far the hardest thing I have ever experienced. We have lost parents, lost a baby at 6 mos. pregnant and lost his sister to suicide just this year! So I think we have had our fair share of loss. We will keep an open mind when we meet with Hospice today. Best of luck to you.

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