Anyone with End Stage Experience of a loved one?

IMstressed

My husband was recently diagnosed with Liver Cancer. He has been given a 6 month timeframe. I have found a lot of material about liver cancer and treatment options. However, he does not want to undergo any treatment. Nor do his docs recommend any at this time. What I can't find, is information on what to expect in these last 6 months regarding his health, care, etc. I would appreciate others sharing their experiences with me if they can. Thank you very much.

cindy1234

Hello. I am very sorry to hear about your husband. You should research on complementary treamtments to help him relax. I use Reiki on my mother. It is a healing touch therapy to help cancer patients relax. Sorry I cannot be of more help. Love and Light, Cindy

lbinmsp

First, let me say how sad I am that you're going through this. And I'm also sorry that I didn't see this earlier but have kind of shied away from some of the groups that still can bring back pain.

My brother (single, 67) was diagnosed at the point of being end stage. I was his caregiver and I know that my mind, heart and emotions spun nearly out of control when we learned of his diagnosis. The first thing I did, at the recommendation of the hospital, was to contact hospice care. They were amazing! They sat down with my brother and me and talked about everything and anything, including what to expect. They told me that, for the most part, liver cancer is not terribly painful but that any discomfort or pain he experienced as time progressed could be aggressively managed. I think the worst thing for my brother was his loss of appetite/taste. He loved good food and especially desserts! But with the ascites (fluid buildup) in the abdoment, he always felt too full to even eat and then his taste buds all but disappeared. He then became weaker and we had to have almost continuous hospice care for him. Hospice philosophy about pain management is wonderful. Hospice care believes in complete pain management, not just 'halfway measures' that many of us have experienced after our own surgeries. Whether my brother was an unusual case or not, he really didn't experience a great deal of pain - even at the end. When he first complained of discomfort, they started treating it aggressively. At the end he was virtually pain free, yet 'with it' enough to know that I was there holding his hand.

I don't know whether your husband is still with you - I hope so. If not, God bless you and know that this is a horrible roller-coaster ride of emotions that will eventually get a bit better.

rodsangel

lbinmsp said:

First, let me say how sad I am that you're going through this. And I'm also sorry that I didn't see this earlier but have kind of shied away from some of the groups that still can bring back pain.

My brother (single, 67) was diagnosed at the point of being end stage. I was his caregiver and I know that my mind, heart and emotions spun nearly out of control when we learned of his diagnosis. The first thing I did, at the recommendation of the hospital, was to contact hospice care. They were amazing! They sat down with my brother and me and talked about everything and anything, including what to expect. They told me that, for the most part, liver cancer is not terribly painful but that any discomfort or pain he experienced as time progressed could be aggressively managed. I think the worst thing for my brother was his loss of appetite/taste. He loved good food and especially desserts! But with the ascites (fluid buildup) in the abdoment, he always felt too full to even eat and then his taste buds all but disappeared. He then became weaker and we had to have almost continuous hospice care for him. Hospice philosophy about pain management is wonderful. Hospice care believes in complete pain management, not just 'halfway measures' that many of us have experienced after our own surgeries. Whether my brother was an unusual case or not, he really didn't experience a great deal of pain - even at the end. When he first complained of discomfort, they started treating it aggressively. At the end he was virtually pain free, yet 'with it' enough to know that I was there holding his hand.

I don't know whether your husband is still with you - I hope so. If not, God bless you and know that this is a horrible roller-coaster ride of emotions that will eventually get a bit better.

Your message really touched me. I am sorry to hear about your brother, but you have given me a little bit of peace. I too have liver cancer. I was diagnosed with it on Valentines Day, and it was an accidental finding. I was not sick in any way. Just went in for a regular check up, and my doctor felt my liver enzymes were a little high, so the search went on. The University of Madison did all of my testing. Well, not all, but the final testing. I am stage four. I have decided to just let the cancer run it's course. My mother passed away with colon cancer, which spread to her liver, and I was with her every step of the way. She did everything to live. I however, am doing all I can do to enjoy what time I have left. There are only ten people in the United States who had or have this illness. There is no studies, no cure, and no research. My oncologyst says he has never seen this illness in his lifetime of studies. I too have lost alot of weight, enjoyed my desserts, and so forth. I eat mostly cold foods, as my food tastes terrible. My family and friends cannot even believe that I am sick. My doctor tells me that I amaze him. I am really carrying on! I just found this site not too long ago, and you stood out. I just wanted to say that I am sorry, that your brother has passed, but what a blessing that he went with no pain. I too pray that I will go like that, and be at peace. This is very hard for my husband and my family, but they are all on my side and respect my wishes. At first they wanted me to just keep going to doctors, and hospitals and cancer centers an so forth, but with me being my mom's main caregiver, there was no way that I was going to let the cancer eat me up, as it did her. If you happen to read this, please let me know that you did. I am new here to this site, so not sure how it works. Rodsangel

lbinmsp

rodsangel said:

Your message really touched me. I am sorry to hear about your brother, but you have given me a little bit of peace. I too have liver cancer. I was diagnosed with it on Valentines Day, and it was an accidental finding. I was not sick in any way. Just went in for a regular check up, and my doctor felt my liver enzymes were a little high, so the search went on. The University of Madison did all of my testing. Well, not all, but the final testing. I am stage four. I have decided to just let the cancer run it's course. My mother passed away with colon cancer, which spread to her liver, and I was with her every step of the way. She did everything to live. I however, am doing all I can do to enjoy what time I have left. There are only ten people in the United States who had or have this illness. There is no studies, no cure, and no research. My oncologyst says he has never seen this illness in his lifetime of studies. I too have lost alot of weight, enjoyed my desserts, and so forth. I eat mostly cold foods, as my food tastes terrible. My family and friends cannot even believe that I am sick. My doctor tells me that I amaze him. I am really carrying on! I just found this site not too long ago, and you stood out. I just wanted to say that I am sorry, that your brother has passed, but what a blessing that he went with no pain. I too pray that I will go like that, and be at peace. This is very hard for my husband and my family, but they are all on my side and respect my wishes. At first they wanted me to just keep going to doctors, and hospitals and cancer centers an so forth, but with me being my mom's main caregiver, there was no way that I was going to let the cancer eat me up, as it did her. If you happen to read this, please let me know that you did. I am new here to this site, so not sure how it works. Rodsangel

First, let me say that you are amazing and that I have so much respect for your decision and feelings. When my brother was diangosed he was truly at 'end stage'. He received his care at the local VA Hospital and they kept cancelling his appointments as his 'complaints' didn't seem to be critical (they're so understaffed these days). When we finally pushed to have him seen through the emergency room, the tests and biopsy revealed that he was already in end stage and was given only a few months. In discussing 'options', well, there really weren't any at that point. They did drain the fluid from his abdomen to make him more comfortable, but then I took him home. I remember that cold things were more appealing to him as well although mostly tasteless. I tried everything I cold think of to perk up his appetite but with no success.

As I said before, the hospice people I connected with were so amazing and had so much knowledge. I was so grateful to learn that liver cancer didn't come with a lot of pain - discomfort yes - that feeling of fullness pushing up - but they pulled out all stops to make him comfortable, which he was.

I've got cancer too - metastatic kidney cancer - and I too have chosen not to go for a lot of treatment. If they can continue to remove the tumors surgically, I'll go for that, but I'd rather feel as good as I can for as long as I possibly can rather than eat up whatever is left of my life being sick from treatments that have little or no long term success. I truly believe that a positive attitude and faith can take us a long way.

God bless you - you truly are an angel.