Scared and in need of a little support (2nd Thread)

I thought it was about time I started a new and more positive post, we have only one day left to deal with this catheter then a whole new life ahead of us. After all the worry and and aprehension of surgery I have to say that everything went perfect,his surgeon told us he was a perfect candidate for RRP and according to her everything has been as in the textbook since then, better in most cases, he is doing great but oh so fed up with the cath, he's sore and finding that it's stopping him from moving as normal, occasionally he forgets it's there and tries to get up like he used to, only to find that the darn thing stops him and pulls like mad, I would say that about half of his staples are already coming out and I am amazed that some of them have lasted this long, I truly thought they would be out by now. Pain after the surgery was minimal, they had him on Morphine for a short while,  within 12hrs he was on his feet, within 18 hrs we were taking our first walk outside, he was eating as normal as hospital food would let him( he hates their food )and I was having a problem keeping him IN bed , as normal he couldn't sit still. He's staring to get apprehensive about the pathology results, which we will also get on wednesday, I must admit I have been thinking about them too, and just hoping and praying that all is well, He's a worrier, I'm more practical, yes I am aprehensive about the pathology but to me the worst is over and anything else they decide to throw at us, we will deal with as necessary,   I would like it someone could give me a little more perspective on this aspect, how do you guy;s really feel about the incontinance? Embarrased? ( which I know is how he feels)Resolved? Disgusted? If you can let me know how this really effected you, I would appreciate the insight and it will help me to get him over this part of recovery. We have Depends in for him at the moment but if anyone has something that worked better for them please let me know, I have already noticed that these seem very bulky and I know he will be very concious of them, thinking that people will notice that he is wearing one, I dont think you can tell, but try convincing him of that Any advice anyone has for after removal of the cath would be appreciated, I think we are ready but if you can let me know of anything I may have forgotten...please let me know Huge hug to all of you on here, I think you are all awesome and thank you so much for all the help and support you have given, I dont think any of you have even the slightest idea just  how much you have helped us, but we couldn't have got through this without you Title: No Subject  Post edited to add title to thread… Post Edited By Moderator (bluebird) : 9/30/2007 8:40:16 PM (GMT-6)

Hi Leandra,

There are a number of posts that deal with incontinence - even one that discusses what pad types are better ot not! I think by doing a search you can find them.
Right after the cath was removed (much the same as Tony described) Don used Serenity for Men - a slimmer line than depends. The quickly went to pads (women's) and exercising. His surgery was Feb. 9, 2006 and by April 8 he walked our youngest down the aisle...dry!

All things will fall into place - you're strong and will be a great help to you husband..maybe if he could get on here he'd see how the guys have handled all kinds of issues.
They are open & kind and willing to share with all of us. Stating the obvious, it helps to know that your not alone - especially with a disease such as this.

We'll be looking for your post re. his pathology and praying for the best.

Take care of yourself,

Susan

Hi, Leandra. You're ready to move forward and things are looking up! All the best for a great path report tomorrow, too.

My husb. is still one of the laggers on incontinence. It's slowly getting better. Right now, focus on the possibility that continence will come quickly. Husb. went the pad-only route and refused to wear the full underwear things. I think the word "diaper" was just too much. Never had any bed leaks at all as lying down is really when most guys stay dry, anyway. If incontinence hangs on for awhile you'll see all of the emotions you described. They'll come and go and range from frustration and disgust to remembering that this beats the alternative. Then the cycle starts all over again. Up and down, then up again. Stay positive as you can and empathize as best you can when those emotions hit. Just remember - it will get better and most do it fairly quickly!

Leandra,

Stay positive!  That's what I've been told on this forum time and time again, and it really is important.

At the same time, help prepare him for a less-than-positive experience when the cath comes out.  I was not prepared for the gushing but that's what happened... and it still happens seven weeks post surgery.  I felt my life was over... that I could never live with all of that pee-wee gushing out, etc.  The incontinence was the worst it could be and no one spelled out the possibilities.  I was prepared for "leaks", not for gushes. 

The positives I had going for me was that (1) I found this web site and (2) I am gradually getting better.  I'm getting better not in giant leaps, like some here, but baby-step by baby-step.  (3) The Lord is helping me. 

I had to visit my dermatologist the day after the cath came out.  I was so humiliated because the nurse had to find something for me to pee in when I released the penis clamp (I didcarded that thing quickly) and the dermatologist had to hold the urninal type thing as I stood there trembling and ready to burst out crying (I did cry some, but not where anyone else could hear me, except my wife... bless her).  The dermatologist offered much more sympathy to me and offered much more help than my surgeon, who was in-and-out too quickly.  One thing he said that still stays with me was "This will pass."  I saw him again recently and he said, "Boy, you're doing much better than you were before."  Amen.

So stay focused and positive.  This will pass.  And prayerfully the path report will be good.  If it's not, there is still lots to be done for him, as you know. 

I too decided agains the Depens underwear and go for the Depends pads, even though I have to change them several times a day.  If I had to change the underwear I'd have to take my pants off every time.  And the pads don't show.

Gene 

Gene

Just an added comment about depends underwear and the pads. If a person wore only the underwear, in addition to Gene's comments, would be the sensation of the entire thing getting wet and the feeling that would go with that versus one pad that can easily be changed and keep the wet all in one place.
;o) Linda & Bob

hi everyone. the catheter and staples were removed today, thank goodness he dosen't have that leash attached anymore, he seem to be able to relax much easier now.

However that pathology report wasn't as good as we had been hoping for, lymphnodes and seminal vescles were clear,from the biopsy it was thought that it was confined to one side it was actually in both sides.

Gleason Grade 4+3 =7 involving 60% of prostate volume

Perineural invasion present

positive margins on right apex

They haven't given us an upgraded stage as yet and to be honest we didnt think to ask. they told us that during the op they took a liitle bit more of the urethra just to be sure, that's where the positive margins are, they seem to think that they did get all of it but can't be sure, the pathology found cancerous cells in the extra they took, so now we have to have a psa in 1 month then another in either 1 or 3 months depending on the results, he was upset this afternoon so didnt call and see what his psa was from today, i dont think he wants to know right now.

 

Post Edited (Leandra) : 4/10/2007 5:44:01 PM (GMT-6)

Hey Leandra,

I experienced all kinds of odd sensations in the bladder area just after the catheter came out. It was impossible to distinguish "bladder full" from the pain of the surgery. It all got better over the next couple of weeks and the signals became clearer. At first, I just headed for the bathroom anytime I felt anything. Sometimes it was pee time, sometimes it wasn't.

Also, as the swelling went down, my bladder capacity increased. At first it seemed I peed more than before surgery but it quickly got better. I had problems going many times during the day and night before surgery and now I am back to where I was when I was in my 50s. Lots of capacity, strong stream and no night calls.

Good luck and you guys are in my prayers for complete recovery...

Jim

Leandra - that's great news - his PSA has gone down so much and after only 2 weeks post! It sounds like things are getting a bit easier - that's a relief for you both.
You're taking great care of him - just remember to get your rest, too.

Have a blessed Easter,
Susan

Hi Leandra,

Just thinking about you, we hope you kids are OK. Hope you come back and talk.

Here's to missing you....

Tony & Ruth