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Night time continence

9 years 8 months ago #34076 by Flamenco.
Dear Hox,
I tried to respond to your post yesterday but also had a glitch that said I had entered an incorrect code, and my message was wiped out. I found your post heart rending to read, but can understand your feelings as being comparable with that of the loss of a child or loved one. I wanted to respond because I don·t think you should go away, or stop posting, you have too many friends here who dearly would like to help, even if it is only by listening to you. When you are just barely bouncing along the bottom, it feels impossible to talk about your feelings at times to those who are close to you. I believe I speak for others when I say we are with you, whether your opinions differ from the majority or not.

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9 years 8 months ago #34073 by Cynthia
I think we need to clarify what is being said here. This is a support forum and our first instinct is if someone is in pain or need we as a community come together and try to help that is our mission and goal. And that is what we have tried to do in this case as usual.

But that is not what you are asking for you are asking for a place to state your opinion that there is an alternate option than the one that is the norm here. That you feel you would be better off if you had not had a Radical Cystectomy and had been allowed to die with dignity rather than deal with the altered life style you now have. We heard that and we did not try to in any way invalidate your feelings on the subject, they are your feelings not ours. And you also felt that this light and twinkle forum would get rid of your post as it did not fit in with our opinion. You were not asking for support or comment just a place to state your opinion.

Your opinion is duly noted and we hear you now I ask you to hear me out just one last time. You said that at one time you had known profound depression and that finally a diagnosis was found that alleviated it that should give you a glimmer of hope. Is it possible that there are answers for some of the symptoms and pain you are now experiencing? If you’re present Urologist is not hearing you and trying to help is it time for a second opinion? Could your medications be contributing to the situation have they been reviewed? Could the physical trauma you have been through be causing a chemical imbalance? I have no idea if there are answers to what you are experiencing but I do know that a time comes to either light a candle or curse the darkness it is a personal choice. If you have done all you can to find answers and there are none for you please except my profound apologizes as I really cannot know another’s pain. But please except the fact that you cannot ask any of us here to not try to reach out and help it just isn’t in us to do anything but.

Your experience is atypical, we have over two thousand registered users here and your story is not the norm, your complications have been numerous and severe. But the truth is that most learn to deal with the aftermath of a Radical Cystectomy it is not always easy or without its challenges but adjust they do, and most of us go on to have pretty good lives.

Know that all of us only wish you the best.

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

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9 years 8 months ago #34071 by sara.anne
Got the whole message typed out and LOST IT @$#%!# Will try again.

Wanted to comment that the horrible way you are feeling may not be "all in your head." I spent many years of my working life studying the chemicals in the brain that probably regulate such things as depression. Your body has been through a number of totally un-normal experiences lately. It would not be unusual if your electrolytes, hormones of all kinds, and metabolism were completely out of wack. This does not mean that you do not feel exactly what you are feeling...but it may help if you can step back mentally and consider that REALITY and what you are seeing as reality may not be exactly the same, for reasons that have nothing to do with the real you. This won't change the way you feel, but may help you to adopt a new way of thinking about the way you feel.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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9 years 8 months ago #34070 by mmc
Sorry if my response didn't come across properly Rick. There is a limit to my understanding and clearly your situation is beyond what I can comprehend. I thought you would want to try to fix the current situation you are in if it is at all possible.

It seems that you and I are both trying HARD to communicate but we're missing. I am hoping that you won't accept your current situation and that you are able to get help in addressing it. Your current state of mind and state of living is a much more serious situation than I can comprehend.

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...

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9 years 8 months ago #34068 by GKLINE

Since I had such crushing word count in my post I was late to seeing your latest post.

DO NOT GO AWAY ! We are here because we have been through this with you and we care.

Stay with us. The emotional side of this cancer thing is as varied as anything can be. We are all different and we all react differently. Keep with us now. Is it going to be easy?....... Hell no! Are we going to give up on you just because we disagree? Hell no! Are we going to give up on you?........ You know the answer in your heart!


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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9 years 8 months ago - 9 years 8 months ago #34067 by GKLINE

I would like to rejoin this discussion with the new information you have provided. I sincerely wish you the best and can now relate a little more to your situation. I strongly believe the positive attitude is THE key to recovery. The surgeon can only do so much. I feel that you are having such a hard time with this, partly because you have lost the will.

Just so you don't think I come from the land of "happy feelings," I can relate to how life can beat you down. We have both been through this cancer thing and it has taken its toll on us. I, too, have a mother who lives Very close by (300 yards) that is in the very late stages of Alzheimers and comes by 4 or 5 times a day with the darndest situations. My father is adament about NOT having any help in the house and relies on my wife and I to take over when we are not at work.
Since 2008, I have seen the business world change and finally had to sell 40% of my business to keep it going. My health situation for the past 2 years has been a work in progress, to say the least.
My convertable sat in the garage for a full year before I Blew up the tires, put the top down, put on a coat and gloves, and roared off on a 300 mile blast through the lakes and mountains on a crisp 40 degree day. My spirit finally began to rise again.

I too have been fortunate to have the Love of MY Life with me through this period.

This is where my strength and attitude finds it source. I have the BEST support group anywhere. And I think you do too!

So here we are. Life has been unfair.... very unfair. We can look into the sadness and follow it down. Or we can look at the life we have to live, the people who make it worth living, and pull ourselves out of bed every day. I look at each day as a CHANCE... Just a Chance. To make a difference, to share a laugh, or a tear or a shoulder. Great things have been accomplished by people who were given a losing hand in life. They never gave up. They looked outside of themselves and found purpose in living. I was trying to do just that when I responded to your last post. I was trying to force your line of sight upward and forward. We cannot wallow in the things we have not. In every life there are challenges and problems. Some people are given an extra dose of hard luck, and they overcome and LIVE! And I do mean LIVE!

I am hoping to PUSH you into LIVING. I am sorry I made your incontinence problem a source of humor. But, there is so much more to live for. Please look at your blessings and "the love of your life" You have a lot to live for. The love and support of another person is the greatest gift you can ever receive. You are blessed indeed. Revel in this gift. Draw strength from it and never let the fire go out.

I will, at times, kick you in the pants to move you forward. This is because I need you looking outward. As the instructors in my racing school constantly harp on..... raise you eyes! The know that low eyes will lead to an offroad experience because we cannot react quickly enough to the changing road if we are NOT looking far enough down the road.

Sincerely, very Sincerely


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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