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Patience, Discouragement, call it what you will . . .

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

It has been 2 months post radical robotic for me. I am 55 years old. I have read the postings by kreinholt, tpelle, lion1 and others.
How do you measure improvement? I soak 4 depends type diapers every day. I do the Kegels as often as I can. I hate the results!! I am tired of wearing and feeling a wet diaper.
My check up last week - doctor is very satisfied with my progress and states I am where I am suppose to be. Well, it is true that my 1st post PSA was < 0.1 but, I cannot accept the incontinence and impotence. I cannot remember my penis being this small!!
Okay, I will be patient and I will not give up. I cannot imagine 2-3 years of this. I am lucky.

shubbysr (jim)

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Jim,
I'm sure it must be frustrating to you. I have not had my robotic surgery yet (Scheduled for Aug 12) and am dreading everything that you have mentioned. I don't have any words of wisdom for you but I guess to hang in there and I hope things Improve for you. It seems so strange how some men have excellent results and others have harder times with it all.

I've tried talking to my wife about my fears but it just doesn't seem to be able for her to understand though she says that she does.

Larry

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

Hey Larry,

Thanks for words of encouragement. I will keep you in my prayers for your upcoming surgery on August 12. Don't stop talking with your wife. I am sure she has a fear of the unknown, just as you do. My wife is very supportive but, it took a bit before she expressed her feelings to me.
Advice to you and myself "stay focused", it will work out.

Jim (shubbysr)

Kentr
Posts: 111
Joined: May 2009

Larry,

You said, "I've tried talking to my wife about my fears but it just doesn't seem to be able for her to understand though she says that she does."

It's difficult to fully understand what someone else is going through but you can rest assured she is doing her very best. If you knew someone with breast cancer that was facing a mastectomy, you would say you understand but would you really? We never know until we walk in their shoes.

That said, all of us here on this board DO understand because we're "there" with you. While it's normal to be afraid, do your best to deal with it - we all go through it. Heck, I'm 18 months out and sitting here worrying about what my latest PSA reading will be. I'll find out tomorrow....gulp! :)

Once August 12th passes, you will feel a lot better about all of this I'm sure. More than a few of us have you in our prayers.

Kent

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Kent, Thanks for the words of encouragement and prayers also. I really needed them. I've been up visiting my parents for the last few days and my brother (who is going through) a divorce is living with my parents right now. Him and I don't get along real well and its been kind of stressful. When I tried to talk to my wife this morning via phone about some of my fears it just ended up in an argument. I understand what you are saying. I have shared some web links with her but so far she has not looked at them. I also know she is extremely busy since she is a nurse working 12 hrs shifts and has been working on her RN degree with just the state boards left to take. At times it just gets overwhelming for me but you and others give me hope.

Larry

Kentr
Posts: 111
Joined: May 2009

Larry, of course you are welcome. Based on what you have said, I strongly suspect your wife is in major denial and is more scared than you are. Sometimes when we are afraid, we lash out at others for no good reason and at other times we bury our heads in the sand like an ostrich.

While I'm not a mental health professional, I spent almost my entire career dealing with people that had problems. That said, instead of sharing web links, share yourself.

You might try to put your feelings and fears in writing and give it to her with a card that says I love you, I'm very afraid and I need you now more than ever (you can get a blank card and just write that part in)

When feelings have been memorialized it's pretty powerful stuff. You might even include a cut-and-paste of your response to me so she can see the depth of your concerns.

Now, as far as your brother is concerned, maybe you can sit down with him and take roughly the same approach (I love you and need you). Maybe you can break the ice and work toward resolving whatever it is that has come between the two of you. Not knowing the particulars, I'd bet it's not something that justifies the two of you finishing this journey mad at each other. If it's something you did, just say I'm sorry with all my heart. You may have to give more than 50% to resolve matters but, isn't it worth it on the long run?

Just a few humble thoughts from a simple guy. We are all here for you my friend!

Kent

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Hi Jim.
Just keep your faith up. I know it's disappointing on the things you are going through.
I myself have been lucky on the incontinence so far (praise God), just wearing pads. The other day (Friday) I had to call the emergency number for my doctor. It seemed that my tip was swelling closed more that day. When I urinated my penis would bow and point off to the left. It hurt more to go also. The doc that answered told me if it gets worse to go to the emergency room, I just wanted to know if this was normal. The day before was the best day as far as burning pee. Wow like the guys on here say 1 step forward 2 back sometimes.
It has got better. I think I didn't drink as much water the day before, my bad.
I am saying a prayer for you now and will keep you in my prayers.
Put it all in Gods hands Jim, He will take care of you.
Keven

4MYGUY
Posts: 12
Joined: May 2009

Jim
The older I grow the less patient I am. When ill health befalls us it reminds us that we are no longer 18 and invulnerable. What you must do is resist gravity!!! I think Global Climate Change is making gravity stronger and we just have to work harder to resist it. A positive attitude is a great cure. As for smaller penis size; the removal of the prostae creates a void and the penis falls back into the void causing the loss of 1/2" to 1". Or were you just telling us about the one that got away? Sunny dry days to you. 4MYGUY

kreinholt's picture
kreinholt
Posts: 35
Joined: Mar 2009

Jim, I am 4 months post surgery and have not yet conquered the incontinence. I have learned to live with it so far and have adapted to my daily routine and extra curricular activities a lot of advance planning. I still participate in karate, snowboard, go to my son's sports activities, flying, etc. I never leave home without pads. I have no issues when I am sitting or lying down, in fact those are two of the events that I really feel normal again. After my catheter was removed, I felt that I could somewhat hold my bladder until I could reached a bathroom, but only if the bathroom was close (10 - 15 feet away). Then for some reason it become harder to do that. As a matter of fact, it was to the point that I was even leaking when I was sitting down which was very discouraging. I kept doing kegals and at some point wasn't sure if I was even doing it right. I then got more in tune with the muscle that I really needed to strengthen and after about 2 and half months, I can hold large amounts until I reach a bathroom. This is especially evident at night or when I get up in the morning. It is a good feeling to be able to do that now. I live in Salt Lake City, UT and on occasion fly to Buffalo, NY on business. I fly Southwest and have no shame in telling the gate agent that I have a medical condition that requires me to sit in an isle seat near a bathroom, which allows me to pre-board, since SW does not assign seats. That helps a lot. I normally visit the restroom prior to boarding, however, one flight I was sitting for a couple of hours and lost track of time. The plane started to pre-board so I got up thinking I was going to go straight onto the plane. I ended up though, standing there until they could load three wheelchair pre-boards, however, I was surprised and almost elated that I was still able to hold it until I boarded. Lately I feel that I can hold smaller amounts with a little trickle before I reach the bathroom, so I take that as a minor victory and keep on doing my kegals. I still constantly leak when I stand and walk for long periods of time; I have not been able to conquer that yet. Some days are better than others, I think depending on my liquid intake. I have leaked out of the pad on occasion but those were times that I probably pushed the envelope a little too far before doing a pad change. I guess the overall moral of my story is that I too can’t help but get discouraged sometimes because like you, I am tired of leaking, but it was the cards that I was dealt and I am determined to not let it beat me down. I love to snowboard, want to be a black belt in karate and have a 7 year old boy who still needs me to throw the baseball and shoot baskets with him. I am taking it one day at a time and try to not have any illusions that I should be completely dry at this point. Keep your head up Jim and don’t get too discouraged at this point. Again I didn’t really noticeable much difference until mid to late in the third month, especially when I modified my kegal exercises. Keep us posted.

Kurt

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

Wow! I never realized the support from all of you. It has certainly lifted my hopes and spirit for recovery or maybe just acceptance of having the disease.
I am going to be a bit more diligent with the Kegels and take it "one day at a time!
Keep writing guys it really helps!

Jim (shubbysr)

shipjim's picture
shipjim
Posts: 130
Joined: Apr 2006

I didn't have too much trouble, used the depends for a month or so then huge uncomfortable pads now regular mini pads. Time line...surgery Feb 7 2006. Still use minipads, leak when I drink wine, lift, sneeze etc. Still practice kegels. I went to some seminars and met guys who had extreme incontinence after a long time but they were the exception. I'd talk to the MD again and see if there is anything else to be done like meds or eventually an arifical spinchter.
Good luck, keep us posted.

P.s. When I fish as in the photo, no one knows because it runs into my waders and keeps my feet warm.

acslife
Posts: 12
Joined: Dec 2008

It's been two years since my surgery. I came off the pads a year ago after one year with marked improvements each month. I walked about two miles three or four times a week. That seemed to have helped my swift recovery. Have some patience.
Best wishes

NM
Posts: 214
Joined: Jul 2009

I am just getting started but this is my most fearful issue. I work in a sawmill and am on my feet 10 hrs. a day usually. I do not know if i can afford to wait months for small results and I know I sound petty but I need to feed my family too. This is the #1 problem with me doing anything any advice? thanks NM

ismetals's picture
ismetals
Posts: 70
Joined: Feb 2009

After three months i was back on the vfd fighting fires and doing all the things i did before even ice fishing. From what I've been nothicing on this site it's not all about the surgeon it's alos about the atitude and physical fitness on the patient. Woking in a saw mill sounds like good preperation for what you a facing. Good luck, God Bless and we will be following you.

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