Forum

× click the New Topic button to post

One Year Later

12 years 1 month ago #8238 by dmartin12358
As difficult as it may be, I believe that anyone with an illness 'owns' their disease. While loved ones and doctors can give suggestions, the patient is (and should be) the final decision maker.

I participate in a 'live' cancer support group where the issue has come up many times how someone (a spouse, son or daughter, parent, friend...) wants the person with cancer to do something they prefer not to do. Usually the issue revolves around which treatment to undergo, or the decision has been made to cease treatment.

It's really tough to do (and easy for me to say), but maybe you can find a way to spend more time on 'you'. I'm not suggesting that you ignore or tune-out your husband, but since he has pretty clearly indicated what he path he wants to take, what things can you do for yourself? Perhaps attending a cancer support group (with or without your husband) would be helpful. It's helped me tremendously.

Your earlier statement to your husband that you would support his decision is the right thing to do. Hard as hell to do. Give him a big hug, tell him that you accept his decision, and move forward. He'll likely understand that you'll have to work through the decision of his that you don't agree with.

I really wish you the best.

Dan



I did print the responses and read them to him and he listened but it didn't seem to change his mind.

From the very beginning of his diagnosis I always said that I would stand beside no matter what his decisions but now I regret saying that. I don't agree with his decision.

I feel like I am falling apart.


Dx 7/04, CIS + T1G3, Age 50
2 TURBTs
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)

Please Log in or Create an account to join the conversation.

12 years 1 month ago #8233 by TheWifeAgain
Karen and her Hero
What you wrote was such a great way to explain how the "invasion" of cancer affects a family. I never wanted to sound selfish but I considering him waiting "for one more" chance to be gambling with not only HIS life and future but my life and future.

I am so frustrated at this point.

Thanks also to Dan. You are a hero too.

Also to answer another question above--no my husband does not use the computer, is not into modern technology and has limited reading and writing skills. Which is one reason his coccupation as a carpenter is his lively hood and he is a workaholic. He may have a slightly different fear than most as to living with a stoma because his life is his job.

He also has family members who agree that he should wait until the last possible chance to have his bladder removed. I am also upset with them for not being more open minded and supportive to MY reasoning and research regarding statistics and prognosis.
I did print the responses and read them to him and he listened but it didn't seem to change his mind.

From the very beginning of his diagnosis I always said that I would stand beside no matter what his decisions but now I regret saying that. I don't agree with his decision.

I feel like I am falling apart.

Age 53 Currently
Bladder Cancer Diagnosis October 2006 T1G3
2011 Finally made it 6 month between Cystos
8/22/2011 Cysto in the OR
(BCG and BCG Maintenance over the years)
Graduated to yearly Cystos
Tumor found at first one year Cysto - TURBT 4/26/2013
Kidney pain - CT scan 5/1/2013

Please Log in or Create an account to join the conversation.

12 years 1 month ago #8185 by momof4
After talking to my husband about this post, this is what he has to say:

Quote:

"Men need to realize that a "Real Man" puts his family first, what their needs are. Masculinity isn't between your legs, it is how you conduct yourself, How you do what needs to be done. "Real Men" fight against anything that is trying to attack their family and their livelihood. This cancer is standing in the way of the rest of your life. Should a man just stand there if someone is going to hurt his wife or his children? No Way! That is what this cancer is doing! It is legal to kill someone that is breaking into your home, well this cancer is beating down your door, you have to at least try to defend yourself and your family. Someone (the cancer in this case) has a loaded gun pointed at your head, won't you at least turn or throw up your hands to protect yourself? Yeah you will probably still get shot (the surgery and loss of bladder,prostate etc..), but it won't be a mortal wound"

By,
Karen's Hero

I think he put that beautifully!!!!

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

Please Log in or Create an account to join the conversation.

12 years 1 month ago #8183 by dmartin12358
I've read Karen's responses, and they are perfect - direct and to the point. So I'll chime in, too.

Most of us were in denial at some point, scared, stubborn..., so your husband has lots of company.

I'm curious, has he read these posts???

If he wants to talk to someone who has undergone cystectomy, have him call me.

I'll tell him that life without a bladder is great!!! That I don't miss all those damn BCG instillations and pain and cystoscopies every three months and that gnawing ongoing worry about whether my cancer is gone or not. That I had an excellent surgeon and was fortunate with nerve-sparing surgery in that my sex life, though different, is pretty damn good, that I have erections without pills or shots... And yes, I can pee standing up or down or sideways.

And I'll tell him that even if my cancer returns, I'll die with the satisfaction of knowing that I did the best that I could - I'll sure as hell have no regrets that maybe I should have chosen a different treatment path (nor will my loved ones!!!).

(408) 749-0513

Dan

Dx 7/04, CIS + T1G3, Age 50
2 TURBTs
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)

Please Log in or Create an account to join the conversation.

12 years 1 month ago #8178 by momof4
Hi again,

If he wants to talk to me or my husband I would be happy to tell him! There are some things that are worth a risk, this is just not one of them. Have him speak to a professional about the neo bladder, he will still be able to "Pee Standing Up", which at one time was a very important thing to my husband. Now he is so weak from the Chemo he is sitting anyway, or leading on the wall.

He needs to realize that choosing not to do the surgery isn't going to stop the pain, or the cancer. The only chance to stop both at this point is the surgery. Even if he chooses not to have it, he is still going to be in pain, does he realize this? He needs to accept it, It sucks either way I know but it is really the only "LIVING" opton. Tell him to take the lesser of 2 evils which right now is removal. Once the cancer spreads, the pain is unbearable, and there is nothing but pain medication, and hospice then. There is life after removal, but it is highly likely there won't be without it. I am sorry if I sound angry, but men can be so infuriating! Their lives don't center around their penis' or at least they shouldn't!! Men are so afraid of the urologist, and the proctologist that they let things get beyond help. Just to save alittle embarrasment! I think that little boys should be required to get exams at puberty just like girls, then maybe the stigma would go away. They would be used to being "looked at" before the age of 40! Ask him if he would think of you less if you had your breasts removed due to cancer??? Love is so much deeper, and more important than all of this superficial crap. I know it is a tough decision, but it needs to be made. He could be almost completely healed and cancer free by the holidays. Or he could wait till the new year and see where the cancer has decided to go after it destroys the bladder. Maybe the lungs, he will have trouble breathing, the heart, the liver, the kidneys, the brain, the bones. All of those places look so healthy and inviting to this agressive, evasive cancer. Stop it in its tracks before it gets on the Lymph Node super highway! Talk to him as bluntly as I have. Sometimes you need to scare the shit out of some people to get their attention. This is real, it is happening, what road are you going to take. Bottom line...No more waiting.........

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

Please Log in or Create an account to join the conversation.

12 years 1 month ago #8158 by Mike
It may be all three but at this point it doesn't matter but I'll tell you this he will be more scared when that Dr walks in the room and tells him the cancer has now spread from the bladder and then what has he accomplished. I did not wanna lose my bladder either, I ended up with the Indiana Pouch because the surgeon and he is a good one thought he saw a couple things he did not like as far as the neobladder goes. I was dx 1/6/07 and had my surgery 6/20 I am not the same man energy wise and my sex life is not the same but as of now I am cancer free and I'm alive. Joe ;)

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 2 Users and 1679 Guests 
EdFlaherty's AvatarEdFlaherty, sara.anne's Avatarsara.anne

Legend: Site Administrator Global Moderator User Banned

Statistics

Today Total Opened: 0 Today Total Answered: 3 Latest User: njumandrow652
Yesterday Total Opened: 1 Yesterday Total Answered: 5
Total Posts: 52898 Total Subjects: 6886 Total Users: 8469
Powered by Kunena Forum