Bob's Wife- I'm not handling this well

First of all I want to thank everyone for your feedback- I shed quite a few tears reading what you all wrote. Thank you most sincerely. Bob is back in the Intensive Care unit again- we very nearly lost him last night. The kids & I are a little shell-shocked at the moment. Andrea or I will post an update sometime today. Best Regards, Lorrie

Funny how the real issues are coming out.

Lorrie,

I'm so pleased that you decided to vent...you need to do this...and as you can see,
many of us can understand your feelings. Stop beating yourself up because you are human. Cancer changes things and it takes time to adapt. Try to be patient with both your spouse and yourself. You are at least willing to express your thoughts; imagine how your husband must feel inside his head and yet not being able to express his disappointment. This part of the recovery period SUCKS but you have to maintain hope that things will get better and take only one day at a time. I had my RC on 7/25 (Indiana pouch) and seven weeks later I was angry because I wanted to be back at work but was not ready...and still not....this recovery business takes time and there is no rushing it.

In my case, my spouse didn't want to run away, but I did. We have struggled with marital issues for years and I only saw this as another challenge that would make things even more difficult...over the years I begged him to go to counseling with me but he refused, and we both know that were it not for our children, I would have left long ago. I felt he was already lacking in kindness and compassion and knew he would not be a good caregiver for me so of course I wanted to RUN and find some better place to be. But I didn't. I stayed. He did some things right and in other ways he wasn't there for me at all. My best friend was angry because he has always led a very unhealthy life style while I was always very health conscious and she complained that he should have the cancer and not me. But it is what it is. And all in all, I think that it has in some ways brought my spouse and I closer together.

I hope and pray that since your spouse doesn't read this forum that you and your daughter can pass along some of the encouragement that he needs to hear...remind him that this was a major surgery and that the recovery takes time, and every day brings some improvement, no matter how slight it may be. You and yous will be in my prayers cause I understand how tough all of this must be. I also believe that everything happens for a reason and there is so much positive that can come from even the most difficult of situations, so hang in there. If your heart wasn't in the right place, you would not have bothered to share your thougts with us...you are a good person who as Holly said, needs lots of hugs and reassurance that this too will pass. Trust that things will get better. "For we walk by faith...not by sight." II Corinthians 5:7 You will be in my daily prayers. Melodie

Lorrie,
I can certainly relate to how you feel. It seems your life has been taken away, most of all for your surgery didn't go so well, you've had many trips back to the ER. You haven't reached any good feelings for a while. I remember when seeing my husband after being home a few days walk upstairs in front of me, he only had his depends on, 30 pounds thinner, ad I about lost it. Then after all the time I spend getting all his needs fulfilled he may leave them after changing for me to pick up. I can assure you of one thing, it does get better. I feel so bad for you for what you have been through, the complications as it doesn't help moving things along. I wondered how is he doing with the neo-bladder? He sounds depressed as well, my husband is also not a good communicater, and a layed back person after bladder surgery is not very entertaining. My husband Gene is 66, in good shape, and was a smoker as well. But I try to remember there's alot of people with bladder cancer that didn't smoke. I think at this point the idea's of get a movie, or a pedicure is not going to be the answer, you need help for you and him. You took the first step, you got on here, maybe call a caregiver service, find one you are happy with and have them visit weekly for 4 hours a day. They do anything, I had them set up for my dad after he had open heart in Tucson Arizona, then when I came home to Cleveland Ohio I felt better I could get info from them. They cost anywhere from ten dollars to 30.00 an hour,, the rn"s are the 30.00. Lorrie, I to , the Donna Reed of caregivers wanted to run away, I picked Scottsdale Arizona, I remember saying to my younger brother, Gene is so layed back, I am so animated when going thru life, I THINK I AM SCREWED NOW, I made that statement before surgery because I knew what he would be like afterwards. And now I am living it as well. Its painfully boring. What can we do for you as far as helping you, how small is your place , is he in bed or getting around, whats the daily routine?KNOWING THESE THINGS CAN HELP US? Don't run away just yet!!!!!Ginger Beane

www.urmc.rochester.edu/pr/news/story.cfm?id=1436

Interesting article i read on bladder cancer published in April of this year

dear lorrie,

i am so glad to see you finally went online. i have found that venting on this website has been really helpful. it's hard to find anyone walking in shoes identical to yours anywhere else. as karen so beautifully said, all your feelings are real and valid. and as i always say, your feelings are your feelings - they're not right or wrong, they just are.

my husband NEVER smoked - he eats more healthy than anyone else i know, and is totally fit - never took a pill except for advil. so why did he get bladder cancer? this cancer can hit anyone. i went through all the same stuff as you - wanting to run away, blaming him (in my case why didn't he go back to the urologist every year like they told him to do in 2001?) at any rate, it's all immaterial now.

your situation is harder because you didn't come into it from a good place in your marriage. i think some counseling for you and/or your husband would be a great place to start. i told my friends that i just wanted to run away. many of them gave me horrified looks. however, when i told my husband i wanted to run away, he said, "so do i - can i come with you?" so he gets it. who wouldn't want to run away? this whole thing sucks. keep writing - everyone hear will listen and commiserate with you.

eileen