Seriously.....how did you accept loosing your bladder?

It was a beautiful sunny day, we were sitting in the backyard, my husband starting crying,and said,
"Something is really wrong"....hence his journey started over the next 2 years....
His story one of those where diagnosis after 2 turbts,,,was the bladder has to go....very disturbing emotionally...I remember the day at the Cleveland Clinic....he sitting on the examing table,,,me by the window looking out over Lake Erie,and I said...
Who would ever thought we'd be here hearing this one day".....AND SO IT BEGAN...
Hearing the word Cancer itself is destroying..
the thought of not having your bladder another blow...it is not easy to accept,,,,,the days before surgery still looking okay,feeling sort fine....so why...do I have to do this.....knowledge and education of bladder cancer tells you if its muscle invasive.it has to go....emotionally the brain has to connect and accept....getting to that position is difficult. The day you walk in to have the surgery done,,,your still realing from all of this,,,but if you want life,without cancer...you have to step up to the plate,,,I didn't have to do it....my husband did.......watching was
very hard,as I couldn't make this go away...just make it go away...
I believe our success was due to being at The Cleveland Clinic,,,a surgeon who was compassionate to my husbands feelings,,and giving it to him straight...we both believed what he said...we acted swiftly,
Still......accepting it is much more for some ,that can't.how can we help them..what can we say......as we can't make it go away.....

Ginger

By mycopper
Posted November 6, 2009 at 4:51 pm
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Oh Ginger You wrote exacly how I feel.I want to take this away from my husband so badly. I hate that all I can do is stand by him. My heart hurts so much for him and for you both. Just know you are in our prayers.

Candy

By antuck
Posted November 6, 2009 at 6:14 pm
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Great story Ginger. I truely feel for all who have lost there bladder. Very tough thing to come to grips with. How do you accept losing part of your body? For some it comes easy and others a very tough choice. There is a lot that the mind must comprehend and acept. So far I have been lucky and realize it. I worry if some day I am faced with that difficult choice. I can say I don't know how I'll choose. But in reading what you post and others on this board that life continues to spin everyday. Take what you can and enjoy it. Life is but short trip.

Andy

By EG-NJMason
Posted November 6, 2009 at 6:23 pm
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Seriously, it was a no brainer. I already knew I had a problem, why else would I be visiting the local uro guy. We did a cysto and I could see the whole thing on the screen. Ya really can't miss it when it's blown up 3 times normal !!

This was my first meeting with the dr but I laid it out clearly. Do not hedge, do not try to be nice. So wee discussed the options from a to z, from immediate to long term.

I am not a candidate for BCG. It's a live turbuculine virus and would probably kill me. We would try a turbt and mitomycin. See how that goes, repeat that if necessary.

At some point a determination would have to be made: keep the bladder or an RC. And if an RC, here are the types of long term solution (neo, ostomy etc). This was all on day 1 !

At that point I asked him.. should we do the RC now or give it a try. Again, don't play games.. what's the best immediate AND long term course of action. And I told then - I am not about to go through a lingering painful death because of my bladder (and the attached prostate will go along for the ride).

For 18 months we played the game of turbt and mitomycin. It became obvious that this wasn't working. The cancer had not spread to the muscle or the separating lining but it had crept down the urethra.

Because I had a heart transplant he wasn't willing to risk doing the surgery (We discussed that the first day, too), I made an appointment with a urologist where I had the transplant.

First day I met him, we had the same discussion. He did a cysto and biopsy. A few days later he called and said "He wanted to see me". Again, I said..no games: if you're going to say RC.. then say it..make the appt for surgery and boogie on !

We did..and three weeks later I had the RC.

Note, that in all of this I did not mention my wife. She did not go with me to appointments or consultations. When I had the turbts, I had her drop me off and pick me up. These were my choices.

Some folk deal with trauma and stress.. some give it ! (guess which one she is). This was all calm, stress free, and quick ! And I do NOT for one moment regret how it all played out or was handled given the circumstances.

Well.. I suppose not having cancer at all would have been nice.. but that wasn't the situation.

None of this was kept secret from my wife and kids but no one else was aware of what was going on. Call it superstition or maybe just shy but either way, I don't think anyone (outside my family) needs to know a whole lot about a whole lot ! I especially didn't tell my mother in law. She sure can get the word out.. usually incorrectly, before we even finish telling her !!

i accepted it like anything else in life.

These are the facts: Deal with it.

I just prefer to make it as pleasant as I can.

By roadrunner
Posted November 6, 2009 at 7:34 pm
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Yes, when told it has to go....my husband accepted it too,intellectually speaking,,,but he did not realize how it would change things for him,,,,some need a little help to find the courage,,,to accept life,,,and not risk dying of bladder cancer,as you don't have to,,,,its cureable it you can deal with the emotioanl side of things...its so nice to know now,he has no cancer,,,
and that we acted swiftly,,,me pushing him behind,,,gotta do it,,,,don't worry,,,,,it will be okay....
I will be right here.....the bag is fine,,,,,as long as the cancer is gone I don't care whats hanging on you,,,,hang a bag on your ears,,,,doesn't matter to me...
we will make it.....and we did.......others can too.....once your intelligence takes over,,,,,,emotionally worries lessen.........and you choose life..........ginger

By Karego
Posted November 6, 2009 at 8:22 pm
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I was one of the fortunate ones that had the right doctor from the beginning. I thought I had a stubborn UTI when I went to the urologist. The shock of a serious cancer hadn't entered my mind. I was in excellent health. When he informed me that my bladder cancer was high risk and the pathology confirmed muscle invasion, we discussed my options. There wasn't a BCAN support community for me to learn from in 2003.
My Urologist was my surgeon for my Indiana Pouch also. (couldn't do a neo because of urethra cancer).
Intellectually, I did what I knew had to be done. Emotionally, I slowly adapted to the new me. Just before my surgery, I wrote a letter to my bladder, thanking it for being a faithful organ to me for so many years and apologized for taking it for granted all that time. That release helped me to grieve and move on.
None of us know what we will be faced with in this journey of mortal life, but we can decide how we are going to meet each and every event. I choose to be proactive, learn all I can, and take action. I want to give myself the best advantage I can.
It does no good to deny facts. We can't run or hide. So, moving forward is the only option.
Yes, I've been depressed and anxious, but that wasn't helpful. So, the alternative is to positively make the best of whatever situation I happen to find myself in.
Life is good still. I wouldn't have missed this learning curve for myself. It's a part of who I am today.
Karego

By EG-NJMason
Posted November 6, 2009 at 8:30 pm
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I think we had some of this conversation a while ago in another thread. Yes, it's change. But we are creatures capable of accepting great changes.

As has been said: adapt, overcome, improvise !

Without change we would be naked, living out in the open, eating berries and tree bark and raw meat.

I do not dwell on the what ifs, what coulda's, what shoulda's.. just what is. Giving in to the what's would wear me down.

I have bag.. frankly, I don't see the down side at all..and for every argument that tries to present a downside I have two that show the upside.

This is not a caved-in acceptance. I have not "resigned myself" to being a shunned ostomate. It's just no big deal !! In the grand scheme of things.. it's a nit.

I know some folks are traumatized..or at least that's how it appears. I compare this to the other 'traumas' in my life and it doesn't even register a blip on the radar screen.. So many more important things for me to think about. Both good events and bad that are much "bigger".

By roadrunner
Posted November 6, 2009 at 8:38 pm
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Karego,

You make a good point,,,we can't run and hide....
if you do........who will win........the cancer will win...
for those who have a tough time,,,realizing that going forward is the only option.....we are here,so you can see....you can make it.......again my little post on The Face of Bladder Cancer...you can see the pain maybe,in my husband face,,,,,,but if you look closer,,,he is happy to be alive,AND YOU CAN'T SEE HIS BAG..........

By DRB
Posted November 6, 2009 at 8:52 pm
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Ginger -

I will never forgot that beautiful sunny day either. My husbands urologist came in...sat down... and looked at us and said....I am very sorry to tell you this and I am still very shocked myself...BUT you have invasive bladder cancer......we have to remove your bladder and prostate. All of that in one sentence. Oh my gosh....how in that very instant our lives changed. I actually took it harder than my husband did. He was very strong and of course no one wants to loose your bladder at 42 years old but if it means saving your life...you don't waste much time being depressed about it. We have a strong faith in God and so at that very moment we prayed that God would heal him and give us the strengh to get through this. YES....it's been a very long journey....but we have met some wonderful people along this journey.....and we found this wonderful website (BCAN). I remember it was midnight and I was so desperate to find something about bladder cancer and I came across BCAN. I could not wait to tell my husband that there was HOPE and I read him so many stories. It made him feel like he was not alone. We have learned so much from everyone here. Our lives are changed forever!

STACEY

By mycopper
Posted November 6, 2009 at 9:01 pm
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I must not be to smart because I believe when you are married you must share lifes trials and joys. My husband expects me to be his advocate as I know he is for me. Maybe that's selfish but I call it one life together.

By balihigh
Posted November 6, 2009 at 9:13 pm
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I am the opposite of many of you. My bladder has tormented me as long as I can remember. Even as a teenager, I was constantly having to run to the bathroom. How embarrassing! How annoying! My bladder dictated my life. In 1994 I was diagnosed with interstitial cystitis. By that time pain had joined the frequency which was anywhere from 20 to 30 times a day. I never slept more than an hour or two without getting up and on bad nights, I just stayed in the bathroom.

Somehow I still managed to live a somewhat normal life. I taught school, traveled, and because it had been with me forever, I did not know life any differently. When I found blood in my urine in Jan 2008, I immediately knew in my heart that it was cancer. That was confirmed only a couple of hours later in the ER. Well, not definitely but the doctor did tell me that it was most likely bladder cancer. I came home and immediately got on the internet. Everything I found indicated cancer.

So when the definitive path reports from my TURBT came in, I was not surprised at all. I only wanted to know how long I had to live. When I discovered that bladder cancer can often be treated, I was elated. Seven months later on my second opinion I received the news that I would lose my bladder. I was almost like YES!! I can finally get rid of that sucker. So my acceptance was easy. My quality of life is perhaps the best of my life. Cancer was a blessing for me!

I am sure that I have shocked many of you. I understand how you feel but I also wanted you to know that there is sometimes another side, another story. When I look at my bag, I sometimes smile because it has helped me not only become cancer free but also have a real LIFE.

Hugs,
Nancy

By 15yrsurvivor
Posted November 6, 2009 at 9:55 pm
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Ginger, since I only lost part of my bladder, I cannot totally relate. But I did want to say that this is beautifully
written. One of your best that I have ever read!

By EG-NJMason
Posted November 6, 2009 at 10:07 pm
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Mycopper, I agree. but sometimes sharing doesn't lighten the load.. it places an undue burden the other. I am the stronger of the two of us for these kinds of things. I deal with crisis every day at work. In our personal life ( it doesn't matter if it's me or one of the kids or our parents) I am the one who has to support her when a crisis emerges, I am more equipped.

A I said, I didn't leave her in the dark. we talked openly every step of the way. But if I have to brace her up while I am trying to talk with the med staff then I can't focus on what they are saying.

It's worked for 30 years..many diseases and a few deaths. Every couple does things differently. This is ours.

Smart has nothing to do with any of this. I might be better educated in medicine and emergencies than she is but that is only one facet of life, isn't it ?

By Sophiedo
Posted November 6, 2009 at 10:38 pm
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I haven't had the surgery yet, that will be next month , but when I found out in Aug. my bladder would have to come out after chemo I was very numb, and it did not seem real that is was happening. I wanted to run away and not deal with it. Of course that didn't last long cause deal with it you must. Now I am at the point of wanting to get it all behind me so I can get on with life. I think the biggest help has been coming here and reading how people are thriving even with all you have been through.

Lynn

By roadrunner
Posted November 6, 2009 at 11:29 pm
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I can't explain it.......the day the word was given,it was like the strength to make him see this would be okay just filled my whole being,,,,people who know me,always say to me,,,boy,,,,,,he sure is lucky,,,,,,or boy, you were amazing....gosh.I just did what I felt necessary,,,I am sure he would do the same.....oh boy,I hope!!! Every arguement we ever had disappeared,,,I am a spiritual person,had a Catholic upbringing,,,which served me well, now I pray where ever I am,,,for whatever cause,,,my hope is those who can't make the right choice,know its the only choice,
as we have lost many recently who didn't act swiftly,,
afraid to loose there bladder,,,and now there loved one is alone.......

By roadrunner
Posted November 6, 2009 at 11:39 pm
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15 year,thats okay,,,,,,,your have way there,,,and hope you stay that way,,,
my copper,,,yes,,,,,well.....same here....actually my husband crumbled, by that I mean he froze up on a daily basis,,,I don't have that husband that makes sure I have a fancy room somewhere,,,and tells me to go get some rest,,,,he said,please stay with me.....I made my own reservation at the swanky hotel at the Clinic,,
didn't see the room much....but who cared,,,,being stage 3 I guess the idea of it spreading was first and formost on his mind,,,its okay to be scared,,,men and women,its okay to crumble,,,as long as your advocate is there to pick you up,,,thats why were married.

By roadrunner
Posted November 6, 2009 at 11:45 pm
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Sopheido,
I have learned alot about the women here , who loose there bladder,the aftermath from surgery,,,and the things that they have to adjust to, they get to have hysterectomy along with bladder removal,,woo hoo,,what a break, you too have many things to overcome, of course look at Nancy Balihigh, shes amazing,,recovered in her camper,well its a very big camper,,,with all the do da's.....we sur ecan do many things if we just set our mind to it.....
My husbands words.......I will never have a bag.......
M husbands words.......I will never do the shot....

He does both now.....amazing........

By roadrunner
Posted November 6, 2009 at 11:51 pm
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Stacey,
You remind me of me,,,same dedication to getting back what you had,,,your right on target,,,
bless your little heart I know you had many worrisome nights,but when you go up, something gave you the strength to do it all over again....me too,,,,always in a skirt!!!

Welcome to Inspire!

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