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(22 replies, posted in General Discussion)

Carol-
I'm pretty new to this site and have been reading your posts about your husband.  I do wish him succuss with his upcoming surgery.  I have a neuroendocrine carcinoma of the liver-numerous tumors, some pretty large, both lobes of the liver involved, so its unresectable.  My doctor wants to do chemoembolization, which I'm real hesitant about, but I'm afraid I will have to do it.  I was diagnosed 1-07, although the cancer has probably been growing for 20+ years.  Like I told my husband, I'm glad I didn't know about it sooner because I would have just had longer to worry.  I was taking Thalidomide, then stopped to participate in a clinical trial (BIG waste of time) and am now back on the thalidomide.  It seemed to help before, although the doc said it wasn't doing much but I sure felt better.  Anyway, I guess the real reason I replied to your posts has to do with how difficult this all his for you and your husband.  I can relate to his pain and state of mind in some ways, being a patient myself, but I can also see how much pain this is causing you.  When I was first diagnosed, I would get pretty weepy at times, although I tried not to let anyone see.  My husband has been supportive, although there just isn't much he can actually do about it.  I have 2 grown children, and they kind of go back and forth between being worried and kind of forgetting that Mom just can't do everything she used to be able to do.  I still work, even though some days it takes about everything I have to come in and get things done.  I know it's a bad day when I start counting the hours until I can go home from the time I get here.  I made me sad to read that your husband has kind of given up, I hope that feeling won't last for him.  I do know that on days when I don't feel well, the last thing I want to hear is someone telling me to keep a good positive attitude. I have to bite my tongue to keep from telling them where they can shove their advice.  I've had a lot of people tell me how well I'm handling this, but there are days when I feel like a whiny little girl, so I'm not sure I'm really handling it all that well.  After all, the cancer I have is incurable and inoperable and can only be slowed down and somewhat managed.  In many ways, I'm angry, and I think your husband is (or was) also.  However it sounds as though the anger has kind of worn him down into resignation.  I don't know exactly how for you to help him through that, but I think the tough love approach is a good way to start.  I know I can't really "beat"this, but I intend on living with it for as long as I can, I don't ask why me, because there is no answer for that, it just happened and now I have to deal with it.  So, anyway, I do hope his surgery is successful and he begins to feel better.  I don't know if this post helped you any, but I guess it's just another take from a patient's point of view.  Again Best wishes for you and your husband.

Your mother-in-law may have the same problem I have regarding having pain and discomfort after eating.  I have neuroendocrine carcinoma of the liver and have several tumors, some quite large. The tumors cause the liver to enlarge and restrict the opening from the stomach to the small intestine, so food leaves the stomach very, very slowly.  You kind of feel as though your stomach is going to explode, and it does get worse as the day goes by.  If I eat supper too late, I usually can't go to sleep lying down.  I try to avoid a lot of raw vegetables and fruits (I know they are good for you nutritionally, but aren't worth the pain).  She may also have ascites (abdominal fluid retention)  I take 10 mg torsemide for this, however it works best when lying down.  Lasix doesn't work as well for ascites.