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Feel like nobody gets it!

morrisshoey
Posts: 6
Joined: Apr 2011

My husband, 54 years old, has stage IV Rectal cancer, mets to liver. He was diagnosed in August 2009 so we are nearing two years. We are in the middle of round three of Chemo. He had radiation with the first chemo which caused damage to his kidney. He ow has stents replaced every three months. He had surgery and an ileostomy a few months after diagnosis, which was reversed and after reversal he suffered tremendously; it was found he had a fistula so he was given another ileostomy. Originally he was told he was stage III because the biopsy of his liver lesions came back negative but after his CEA rose dramatically they did another CT and which showed several lesions on the liver they andhad grown. Another biopsy confirmed spread of rectal cancer to his liver. We are looking at liver surgery in about six weeks.

He has been through so much that I feel bad and petty even bringing this problem up but I just have to voice my frustration. My parents and brother have passed away so my in laws are my family now. I cannot talk freely to them because my husband doesn't want them to know everything or to feel sorry for him. They all handle things this way so the limited information I pass on to one gets diluted further when being passed on to the other and as a result I get comments from them like "I sure hope the shadow on his liver isn't cancer or anything". This makes me feel as though I have no one who can relate to how difficult this is and it's hard handling it alone. I realize that my husband is limiting the information but I feel that they are preferring to not hear what I tell them either. It's a very frustrating place to be and I just wondered if anyone else has dealt with this? Thanks for letting me vent. Julie

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

Even if you hadn't kept your in-laws in the dark, it sounds like they would have put themselves there - it happens. My husband's family was much the same way - some of them really couldn't deal with it. My MIL's biggest worry was how much hair Doug was going to lose (none, really - not from the chemo; lost some from the radiation but it grew back). She has already wiped from her memory most of what she did see when she came to visit back in November - it's over and it's more like just a bad dream to her.

You're in a tough place - it can really help to have a family member to confide in. I did have a good friend at work who got it, but she was dealing with her own issues (her son committed suicide) so I really couldn't burden her much. I probably owe my sanity to this list - even when I couldn't post, it really helped to read things from others and feel the kinship. You're not alone.

morrisshoey
Posts: 6
Joined: Apr 2011

Thank you for replying. Everything you have said about your experience is true to what I have been going through. I get the hair question too, and it matters so little in the scheme of things. I appreciate hearing its not just me feeling sorry for myself. Which I know I do sometimes. I do have a best friend who I can confide in and she is wonderful, but part of the problem is that my husband doesn't like me to say anything. I don't think he would like that I am even on this forum. I do think he will eventually understand that I need someone to talk to even if he doesn't. I think this site just might be the place to help me through it.
Thank you for being a sounding board.

Julie

peanutbutter
Posts: 4
Joined: Apr 2011

Julie,
I get it because my husband is going through the same thing and sadly this is what it takes to really understand. Many people live in denial because they don't want to face the reality of a situation. It is a limitation of people in general. We move towards pleasure and away from pain. Also some like to be what I call "holders of pain". No one suffers more than these individuals. They always know someone who has gone the same thing. Or they know all these people who have fought cancer and won. Well that is nice if you are on the winning team, however if you are on the losing team, their successful experience just makes you feel even worse.

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