southwind

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.