SE's of surgery..robbing me of my life

So sorry to hear of your troubles.

I think your priorities are so correct:
1. Dealing with the acute stuff
2. Not getting addicted to painkillers
3. Building back your mental and physical strength
4. Fighting the good fight against the PSA (if needed)

you don't seem convinced by your doctors approach to scoping. Are there other options? Is it worthwhile consulting another urologist for their opinion?

In a situation like this it is important not to get overwhelmed, take this one step at a time. NOt easy when you are in pain I know but there is every chance that this is a short term issue with a solution.

Wish you the best. I hear your distress. Please vent, this is exactly the right place to do so.

Regards,
An

Hi Island Time. When I read your post, I think about how it was before I knew I had PCa, and you would hear about someone you knew who had the BIG c, and how you could just kinda sluff it off, and hopefully avoid that person so as not to get into any uncomfortable conversations believing that it will work out for the best for that guy.
I believe that is human denial....you know the kind. " That will never be me if I deny it's existance".

Well, reading your post kinda gave me that same knee jerk reaction, all but for the fact that I know now "That could be me".

Sorry I have no advice on what seems to be more than I could handle, but just to let you know I am here for ya man....whatever support I can provide.

Stay the course, win the fight!

@An38...those are my priorities. It's always acute! And the "old acute" always seems to be a complicating factor in addressing the "new acute".

It's just emotionally, it just so overwhelmin. You cannot run from this. It's always here. It can't end (it seems). It infiltrates and hobbles any and every attempt at normalcy. I'm withdrawing. My world is becoming smaller...I'm sorry. I hate this so much.

@ Cajun ...Thanks for the reply

@ Newton...Your support means alot

@Prat. ..I know. Your an understanding guy. Thanks alot for what you do to help me.



I don't trust people. I don't talk about this. But it's just more than I can manage alone. It's becoming a way of life and this isn't what I signed up for.

No I don't believe I need another scope. But...we're wading into waters that's over my head. What I need is information. There's one doctor who I spoke with on the phone back in Dec. He was on call and admitted me back into a hospital. I got more information and comfort from those 2 phone calls with him than all the other docs combined. I'm trying to get into see him. But he's in the same practice as ny surgeon. They may nix my request. I pretty sure my surgeon isn't proud of his work.

I have no where else to go for support.

I didn't used to tell of problems. They're more than I can do.

Island Time,
God bless you Bro. Surgery certainly has a whole bunch of possible- even likely- miserable SEs. I speak from experience. I suppose RT does also though seemingly far less common and usually ( but not always! ) less severe. I guess that's why I am usually quick to suggest men choose anything but surgery, and if at all possible try the AS approach. ( if lucky enough to be in the group that qualifies ) I wouldn't want any man to go through the life changes I have unless there was no other choice in order to stay alive, and I am probably relatively lucky as far as SEs go.

I have wavered on that a bit lately ( except for the AS whenever possible suggestion ), thinking that the minority of us who find out - by way of path report- they have already spread are at an advantage having this knowledge, and can then go after the needed extra treatments fairly early on. Which I suppose might be delayed quite a bit if you did not have that knowledge.

Still, as long as there are other choices with similar chance of success, I can never recommend any one make the choice I did, and I feel even stronger regarding the low risk guys. 20/20 hind sight for sure. But, it is what it is and no going back. So hang in there, I hope things improve for you soon and that your long term recovery ( from both PC and SEs ) ends up being among the luckiest among us! After all, some here do end up in that group, may you be one of them!

Sorry to hear of your difficulties. That is a truly horrible situation.

We'll always listen and be here. Complain all you need to.

I wish there was more that I could do, but I can listen and hope that it starts turning around for you soon.

Andrew

Good luck IT, hope you walk out of there with at least a half smile on your face.
I logged on mostly to see your thread. We are all here to listen. And help wherever and however we can

Well hello guys...

He wanted to go in and see if the stricture is any better since my dilation 6 weeks ago. (He believes me when I tell him it's not. Judging from urine stream). If not...he'll dilate it again right then in his office. I couldn't get my head around doing it. I told him to write me a script and I'll come in at his first available to have it done when I'm high. He said "No problem". (That's 2 weeks...I'll try for sooner).

What he said was that these strictures can "stabilize" after repeated dilations. He said there's a chance I'll have to cath myself some. He said "I DON'T SEE YOU HAVING TO DO THIS FOREVER". His nurse told me that she sees men that's been coming weekly for years...but I believe she told me they were usually older. (Don't know what that's got anything to do with anything).

@Chask...I'm with ya man. All of my readings goes against what he's told me today. That "When initial instrumentation fails, all instrumentation that follows is pallative". This goes against what he said. And he said that what I read is just flat wrong. I didn't ask him how many times he's seen one "stabilize". He'd already told me what he believes to be the case (in my case) and I felt any other questioning on my part would be interpreted, and reacted to, as argumentative.

So I'm going with his plan. I'm just going to have to get my head around this. That's all. He said there's just no way to put me under every time he dilates.

He also said in his 25 years of practice he's never had a patient with the amount of fear I have. He says this is more a spiritual problem than physiological. I believe thus to be the case as well. Fear has plagued me my entire life. I'm the guy with with the "fearless job", nice cars, pretty girlfriends....who, underneath...is scared of his own shadows. In the guy who couldn't kiss that pretty girl in the 6th grade who stood there practically begging to be kissed. So...what do I do? I ed nd up with the ones whose just as fearful as I am. I can pick 'em out of a crowd. They're all class, pretty and have great careers...but underneath....fear permeates and motivates their actions.

More info than required. But...I've got to face THIS fear. I don't respect myself for not doing it today. Ever time I said "ok...let's do it"...His face lit up and he'd say..."great! Right now?". And I'd say "No. Gimme the pills.

I don't even like those pills. They make me "not me".

He did say he'd put me to sleep for the first dilation so we can get these stones out by blasting. I passed.

The plan...get in ASAP to do this. If there's any chance of it happening (which he says there is) I want to keep my biological anatomy working as designed.

I believe that's just prudent.

I will say this...when I had the scope done 2 months ago...as badly as it hurt (and that was with no dilation) I walked out of there feeling as if I was doing what I outta be doing. I had self respect.

I'm gonna let this man treat me. And I'm gonna let him treat me in the way he believes best. And I'm gonna take it as it comes and I'm gonna take what comes and that's all any human being can do. And...that's what I'm gonna do.

He also said, "I don't run a torture chamber here. If it's too much...We'll stop".

I used that term in a prior post. It's not a torture chamber it's a doctor's office. The first step to not letting fears, pain, etc...keep from letting it overcome my life is to stop ctastrophising. Call it what it is. Not what it's not. This ain't the Honoi Hilton. Just like he said...."There's worse things". And i don't have far to look on thus forum to see that.

My PSA is .00

Sorry for the long long post men.

Thanks for listening.

island time said...
Well hello guys...

He wanted to go in and see if the stricture is any better since my dilation 6 weeks ago. (He believes me when I tell him it's not. Judging from urine stream). If not...he'll dilate it again right then in his office. I couldn't get my head around doing it. I told him to write me a script and I'll come in at his first available to have it done when I'm high. He said "No problem". (That's 2 weeks...I'll try for sooner).

What he said was that these strictures can "stabilize" after repeated dilations. He said there's a chance I'll have to cath myself some. He said "I DON'T SEE YOU HAVING TO DO THIS FOREVER". His nurse told me that she sees men that's been coming weekly for years...but I believe she told me they were usually older. (Don't know what that's got anything to do with anything).

@Chask...I'm with ya man. All of my readings goes against what he's told me today. That "When initial instrumentation fails, all instrumentation that follows is pallative". This goes against what he said. And he said that what I read is just flat wrong. I didn't ask him how many times he's seen one "stabilize". He'd already told me what he believes to be the case (in my case) and I felt any other questioning on my part would be interpreted, and reacted to, as argumentative.

So I'm going with his plan. I'm just going to have to get my head around this. That's all. He said there's just no way to put me under every time he dilates.

He also said in his 25 years of practice he's never had a patient with the amount of fear I have. He says this is more a spiritual problem than physiological. I believe thus to be the case as well. Fear has plagued me my entire life. I'm the guy with with the "fearless job", nice cars, pretty girlfriends....who, underneath...is scared of his own shadows. In the guy who couldn't kiss that pretty girl in the 6th grade who stood there practically begging to be kissed. So...what do I do? I ed nd up with the ones whose just as fearful as I am. I can pick 'em out of a crowd. They're all class, pretty and have great careers...but underneath....fear permeates and motivates their actions.

More info than required. But...I've got to face THIS fear. I don't respect myself for not doing it today. Ever time I said "ok...let's do it"...His face lit up and he'd say..."great! Right now?". And I'd say "No. Gimme the pills.

I don't even like those pills. They make me "not me".

He did say he'd put me to sleep for the first dilation so we can get these stones out by blasting. I passed.

The plan...get in ASAP to do this. If there's any chance of it happening (which he says there is) I want to keep my biological anatomy working as designed.

I believe that's just prudent.

I will say this...when I had the scope done 2 months ago...as badly as it hurt (and that was with no dilation) I walked out of there feeling as if I was doing what I outta be doing. I had self respect.

I'm gonna let this man treat me. And I'm gonna let him treat me in the way he believes best. And I'm gonna take it as it comes and I'm gonna take what comes and that's all any human being can do. And...that's what I'm gonna do.

He also said, "I don't run a torture chamber here. If it's too much...We'll stop".

I used that term in a prior post. It's not a torture chamber it's a doctor's office. The first step to not letting fears, pain, etc...keep from letting it overcome my life is to stop ctastrophising. Call it what it is. Not what it's not. This ain't the Honoi Hilton. Just like he said...."There's worse things". And i don't have far to look on thus forum to see that.

My PSA is .00

Sorry for the long long post men.

Thanks for listening.

Hey IT, you are right: he is pretty much telling you the truth about not running a torture chamber. I have not known many that would do much torturing in their office without quickly stopping and seeking out a guy like me(anesthesia provider, though recently retired). In fact, occasionally guys like me end up working in these guys offices so that they can do some of the more painful procedures in their office while keeping every one happy. Otherwise, off to surgery.

Question: when you have been in his office, did you hear much screaming? You know, those walls are pretty thin. I have been able to hear conversations while I waited. When or if I have heard screams, it was often associated with a poor dementia patient or some one else who might not have even been being hurt physically, they scream if you try to touch them. You can imagine it would not help much to get more patients in there(they all want more patients) if there was a lot of screaming going on.

Still, I understand the dread of what he proposes to do. And I believe you have already had a scope which you found most unpleasant, so you may be thinking I'm a fool to be giving you the above advice since you know better from experience. Still, did you say he offered to put you out for the 1st one so he could get the stones at the same time? But you don't want that? Sounds like a deal to me. If you are out, they could saw you in half and you wouldn't feel a thing. And it's not like you wake up with the kind of pain from that like you might with major surgery. You had the RALP. And maybe other surgeries? What he wants to do, if done with anesthesia, will be a total piece of cake by comparison. Is there a reason I'm missing that you don't want to take that offer?

Post Edited (BillyBob@388) : 7/5/2016 3:47:21 PM (GMT-6)

No body wants to be around some sad sack who's got some chip on his shoulder about something that's not even life threatening (Including ME!) I'VE HAD IT!. I'm gettin these stones out and I'm gonna treat these strictures. And G*d willin'... I'm gonna make something of this that's better than I ever ha d in my life. (And trust me....THAT won't be hard to do....everything else notwithstanding).

No more..."Outside in" crap

IT, man, I really feel,for you, I also get you, because I know you. You'll get through this, you really will.

And thank goodness for the 0.00 PSA, I'm glad you've got that going for you. Don't let that awesome news get lost in this pile of Sh!t.

What a day! (And without one pain pill).

Tall Allen: A computer with a heart! I never expected to see you here. (I don't know why). But yes. Fears of tomorrow's boogie men! This stone op will be 2 hrs. OMG....clots! Lol I'll take it when/IF it comes! ANYTHING'S better than this FEAR!!! I'm gonna ask the uro about those enzymes. He's pretty cool. He's had (big bowel) cancer. One of the reasons I'm sticking with him. He's been there. So he knows that no one has a bigger stake in this than his pt. He listens. (He also advised AS when no one else did). Thank you.


Chask: I think i answered you but wanted to be sure. I'm holding out to make/help this body of mine to carry it's own weight as long as possible. I've read your history. You've been across no man's land yourself. When/if I think i might need the SPC...trust me...I'll be a lookin' for your experiences.


InTheShop: you do more than I think you know you do. Lol what a great quality. I don't know why it's so helpful. What you say....wishing to do more. I believe it.


CaliJR: thanks for encouraging my venting. It shows you have my best interests at heart. You're G9. I don't know how, what to say...


Pratoman: Yeah you know me. Lol you encouraged me to use these guys more right from the beginning. You said their "real people" and I didn't believe it or care (the latter). Scared.


And BOLO: LOL You know what Love is. How does one discuss things in a Loving context...covertly? One pays attention to you...that's how one begins to learn.


Halbert. ...i know you're reading this. I know because you're what's known as a man "who cares". But with balance. (I want more of that)


I'm making an appointment for another surgery in the morning. There's no use in waiting. They (stones) have to come out and I refuse to stand in fear any longer. Que se ra se ra.

One last thing I need to say (at the moment) is I'm ain't gonna lay around locking my wounds any longer about some woman who wouldnt/couldnt/didn't (?) stick around and hold my hand while I was having my little weaner poked at. She's found a better fit. LOL one thing I'm learning...if something doesn't seem as if it's happening for a reason...just wait, because if one doesn't see a reason then one will either have to make one for it or rot in (you know where)

I'm done dying while I'm livin'

halbert said...

Me, a voice of reason????? Thanks for that.

Better said than I (as usual)
(Now you're just showin' off).



I also understand about the courts. There's no limit to the cost of something like this. (And...i know what "no limit" really means).

I thought I'd let someone more versed than I just peruse this stuff and see if they might could give me some insight into what might have really happened. There's one more Avenue and if it's closed then that's it. I don't blame these guys for operating the way they operate (no pun intended). They're almost forced to unfortunately.

Post Edited (island time) : 7/5/2016 9:05:48 PM (GMT-6)