1. Forum
  3. All Categories
  5. Muscle Invasive Bladder Cancer
  7. Night time continence

Night time continence

13 years 6 months ago - 13 years 6 months ago #34066 by Cynthia
Replied by Cynthia on topic Night time continence
Hox,

You do not need to go away. We are trying to talk to you and others will chime in you have opened a thread of conversation give it time and see what comes of it.

The tone of this forum is set by its needs of the moment and the people that give it life. If you read back you will find that there has been much said about the mental side of the recovery that goes with all of this some of it very raw. For some there is a since of euphoria of having been given a new lease, for others there is a since of bitterness of why me? For many of us if you have been around for a long time your feelings about your own situation is tempered by the ones that we have lost,we as a group have gone though a lot. We have faced assisted suicide, infidelity when one is dying, watching someone coming to terms with leaving small children and much more. If it is wrong of us to feel lucky that we are one of the ones that get to see a new day so be it. But that does not mean that others have not gone through personal hell to get to that place.

You want things to change or you wouldn't be reaching out. We are not professionals here we are just people such as yourself that have been handed this situation and are trying to deal with it as you are. If you can not forgive us for not always saying the right thing we will bear with you being angry with us for it.

By the way we do not delete any post that is not commercial or abusive if you will read back you will find times we have not agreed and that is allowed and expected. We are not the Nazis you seem to feel we are but other forums have gone down when there has been flares and if that happens there would not be a place for others in the future. Please read our terms and conditions if you have further questions. As for causing your reply to our personal messaging to disappear it is not within my technical means to do so like all websites we have glitches once in a while.

If you feel that it helps you talking to us we are here. Yes I feel that your situation is serious enough that you should talk to a professional but that does not mean we could not be part of helping you trough the darkness as others have helped us.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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

13 years 6 months ago #34065 by Hox
Replied by Hox on topic Night time continence
I think I have done a poor job of describing my goal in starting this conversation regarding my regrets at having the surgery. What I really wanted to accomplish was to tell the other side of the story. Now I will stop as it appears my experience is something that needs to be fixed rather than accepted. Hox
Rick

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

13 years 6 months ago - 13 years 6 months ago #34064 by mmc
Replied by mmc on topic Night time continence
Rick,

There is no particular 'group' other than folks who have, have had, or is/was a caretaker to someone who had/has bladder cancer.

Given your description of your current issues and your history, it seems more like your current situation is related to those other issues and the (botched) bladder cancer surgery was more of a trigger for that rather than the cause.

As for me, I never had that after my surgery so that is why I personally didn't describe a situation like you described. Emotions are different for everyone and it really sounds like you are in a situation where you need much more than a support web site.

As for others, they would have to speak for themselves. I haven't heard of anything as severe as what you described.

Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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

13 years 6 months ago #34063 by Hox
Replied by Hox on topic Night time continence
Mike. Thanks for your response. I had just finished a reply to Cynthia that you may wish to comment on. Hox
Rick

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

13 years 6 months ago #34062 by Hox
Replied by Hox on topic Night time continence
I penned a long response to you but when I tried to send it a window came up saying wrong code and my reply page disappeared. In short I questioned if you thought the note I responded to wasn't also inappropriate.

I thanked you for your honesty in telling your story but wondered why the emotional impact this situation can have wasn't more openly discussed as part of the advise given to those who come to your site post surgery. It seems everyone is on the pro surgery, all will be great band wagon. If you strive to be a true support site I believe you need to be up front about the mental side so that others can consider this side of things and then, should the decide to go ahead, they would be forearmed by being properly forewarned.

I also wondered if posts from someone like me whose opinion clearly differs from yours and your main group of supporters would ever be allowed to stand for others to read in the future.

As for my state of mind, I wish it were depression, that I have practice at dealing with. My situation is "One flew over the kukoo's nest" stuff... a near complete feeling of apathy towards my day to day life and my chances for recovering my life as I knew it.

Hox
Rick

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

13 years 6 months ago #34061 by mmc
Replied by mmc on topic Night time continence
Rick,

I certainly understand a lot more now. So sorry to hear of where you are now. My closest bout with this kind of thing was when the doctor put me on Chantix for quitting smoking. It seemed that all the joy left me and life was just a drone. It gave me a little taste of what it is like (but not nearly as severe) for people who have depression. Since you had it before, you know that you can't just snap out of it or decide to be happy and have joy in your life again.

It is certainly something that you would need to have treated. My wife and daughter both have depression and take medication that gets them to a place that many of us just take for granted. Hopefully, you can pursue a treatment path that works for you. I get the sense that you are a very strong willed individual but I hope this is something that can get treated so that your spirit returns and there is once again joy in your life.

You can come back from this, but it is not something that you should try to do alone.

I wish you the very best and that music returns to your life and you become a maker of music in the lives of others.

Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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

Moderators: Cynthia, eddiek, sara.anne
  1. Forum
  3. All Categories
  5. Muscle Invasive Bladder Cancer
  7. Night time continence

Login