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Help! On the other end of a prostatectomy and it's all hitting me now.

hawk2moose
Posts: 3
Joined: Nov 2019

Condensed Background: Had the procedure on 10/10/19. Post op pathology showed 55% of my prostate was tumor, so this had to be taken care of sooner than later. Now that the procedure is done, working through the recovery piece.

Unfortunately I have not taken any time to work through the emotional impact of this whole thing. As a result, I'm struggling with a lot of mixed emotions (both up and down) about the whole thing, and wondering what will happen to me now.

This whole thing has just sucked the life out of me.

I've lost all motivation, no real desire to press into anything (which is not my norm).

It's just all so mind-numbing!!!

I'm only 58, still work full-time, have a 16-year-old daughter, still living at home, who needs my support, and a frightened wife who has no idea how to help. 

Question:  Is there some place I can go for post-operative suvivor support?

I really need to be able to talk with folks who are like minded, who have gone thorugh this, and have advise, resources, compasion during this time of my life. I have so many questions about diability options, support groups, what I should expect to go thorugh emotionally, etc.....I really feel lost and alone. 

Lost but hopeful.....

Georges Calvez
Posts: 308
Joined: Sep 2018

Hi there,

Collectively we have been through it all so we really do know the ins and outs and we live all over the place so it is likely that one of us will live in the same country and maybe if you are in  the USA the same state so we have some ideas about financial support, etc.
It is tough, particularly the first few months. I struggled and if it had not been for the fact that my wife needed me I could have given up.
So tell us all about it and we will chip in.
A few weeks after my prostatectomy I stepped out of the shower and coughed, I promptly peed all over the bathroom floor.
Luckily I mopped up it up quickly so it is a secret known only to me and my control is near perfect now but I was really down at the time as I thought it would never get better!

Best wishes,

Georges

hawk2moose
Posts: 3
Joined: Nov 2019

Georges,

Can't tell you how much I appreciate you chiming in on my posting!  Your story sounds a bunch like what I'm going through right now. I have done the exact same thing coming out of the shower, and it sucked big time!!  Felt absolutely unnatural....

If there are any other websites or support groups you know of please share.  I'd really appreciate it. 

Thanks so much.....

ufknkidding
Posts: 42
Joined: Aug 2019

Hello fellow survivor. I'm 8+ weeks out after RARP and it has been a whirlwind to say the least. So far my wife has been hanging in there but man has she had to ride this rollercoaster ride of highs and lows that nobody can relate to except other survivors. It gets a bit overhwelming watching the world go on as normal while ours has been flipped upside down but together as survivors, we can get through this day by day. It's difficult to explain how feelings of failure creep up when you remember one day before surgery everything worked perfectly then the very next day BAM, it's all a mess.  I've looked for a local support group and haven't had much success so I rely heavily on this forum and other website of survivors to remind myself I'm not the only person who just had this procedure and the world isn't picking on me.  Some of the guys on here have been through a lot and all have incredible stories of survival. Everyone's story is different so I recommend trying not to over relate to any one story if possible. Some guys are still recovering emotionally after many many months of recovery and I try to take control of my emotional side to prevent anger, frustration, and outbursts from polluting my life. It hasn't been easy and I failed for about 6 of the 8 weeks, but I'm committed to getting a handle on the emotional part of me since that is in my full control. Try to take this thing one day at a time. I started lifting weights again last week and could only workout for 30 minutes X 1 time and could not do 95% of my previous routine.  So for now no more free weights and only machines until I trust my abdomen can endure. It was a bummer at first but when I left the gym I was like, holy ****, I actually did some lifting again.  Guess we have to look on the bright side of things these days and wait for our bodies, minds, and spirits to fully recover and make our new body the best version possible.

Take Care! Remember, you are NOT alone and keep posting, but remember we can't delete our posts but can only modify or edit them.

My original story is at https://csn.cancer.org/node/320408

hawk2moose
Posts: 3
Joined: Nov 2019

Can't tell you how much your story rang true with my own. Really working through the "I failed" part right now.  Thinking this was all my fault for some stupid reason, knowing inside that's not really the case. But it's hard to wrap you mind around all the ups and downs, let alone look for your family to help you get through it. It's just been four weeks for me and i'm just getting through the intense stomach pains, transitioning into the emotional stuff....If you know of any other support systems (web based or other) please share. 

Thanks a bunch...

Clevelandguy
Posts: 471
Joined: Jun 2015

Hi Tom,

I am a five year robotic removal guy and doing quite well.  As with me I had both ED & leaking problems that have almost dissapeared by now.  Expect about two years of gradual improvement before you plateau out.  Keep doing them Kegals every day, they do help. There should be a local support group somewhere in your area if you need to join one.  Ask us any questions you have, we all have a wide variety of success and failure stories and have lived through what you are currently feeling.  Hope for many more undectables in your future, hopefully the worst is behind you and the best is yet to come.

Dave 3+4

eonore
Posts: 52
Joined: Jun 2017

Hi Tom,

By recognizing that you need some help processing all the emotions that a cancer diagnosis and treatment cause, you have already taken the most important step.  If I were you you, I would look for a support group in your community for prostate cancer survivors.  The hospital where I had my surgery helps coordinate this in my community.  This forum is great, but sometimes in person is really needed.  That being said, it‘s really true that time helps a lot.  As your body heals, your mind will also settle down.

Another thing that has helped me a lot is reading the stories on this forum.  So many have handled their situations with such grace and humor, that it has been an inspiration to me.

Hang in there, it gets better.

Eric

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Tom,

Welcome to the board. We here are all survivors sharing the same problem and experiences, trying to help the many with our own stories. Some are family members who also experience moments of stress and anguish along the process during and after diagnosis and treatment of their husband/father.
I was 50 years old at my prostatectomy and similar to you was unaware fully of the post surgery effects. It was forums like this that spring me out of depression. Survivors above gave you good advices. I would like to add the issue regarding divorce which, though not being common, it has happened to some PCa patients due to the lack of trival understanding by both members.

The facts lead to stress that accumulate for our sense of responsibilities, leading us to thing that we are alone and that the other doesn't care. Your  "... frightened wife who has no idea how to help ..." is real and truthful. She needs help too. Above all, both need understanding and comprehension of the newer you.

Regarding ED I would recommend to both of you to consult a sexologist expert (preferably a urologist with that degree) so that both listen to what is suggested. Receiving instructions from a doctor creates a sense of responsibility in both of you leading to better understanding and finding a solution for the problem.

There is an organization called "US TOO" with imformation on support group gatherings at several places done to help face-to-face PCa patients. Here is the link where you can check if you got one close to you;

https://www.ustoo.org/Support-Group-Near-You

There are also some sites dedicated to caregivers and publications explaining how to deal with the stress after surgery;

https://www.pcf.org/patient-resources/patient-navigation/for-caregivers/

https://www.prostate.org.au/support/caring-for-someone-with-prostate-cancer/

I wonder about your diagnosis. Can you share details of your histology? What was the Gleason score and PSA before and after treatment? What are the present symptoms and pitfalls most boring you?

Best wishes and luck in this journey.

VGama

graycloud
Posts: 39
Joined: Jan 2018

Happy Monday.  Your story is very similiar to my husband's. Surgery at 57.  Initial diagnosis of a Gleason 9 that was downgraded to a 7 post surgery.   15 year old emotional teenage girl at home! His surgery was 1/31/18.  Almost to the 2 year mark!

First of all, talk to your wife.  Let her know your feelings and emotions - as raw as they may be.  It will help her understand your emotions so much better, and be able to provide the support you need.

Sounds like your surgery was a success to remove the cancer, that's so important.  Next is to get over the hump with the side affects.  My husband's emotions were all over the place weeks  after surgery.  It was so hard to watch him struggle with his emotions on the bladder issues.   The thing that helped him the most was getting to physical therapy to help him strengthen the bladder muscles.  Every visit he worked on areas - like getting in and out of bed without peeing, getting in and out of the car, getting up and down out of a chair, going up steps, etc.  He went 3 times a week to PT - and every visit helped him physically and  mentally - to see he was making slow progess to get over the hump.  The therapist gave him encouragement and goals to work towards.   

On the ED issues, the physical therapy will help as well. 

Being the wife of a cancer survivor, I have seen the raw emotions that my husband had at his initial diagnosis, the turmoil of the decision to have surgery, the recovery immediately after surgery, and the slow recovery to get back to normal.  The one thing that helped us the most was to walk together every single day - and talk during those walks.  We have cried together, been mad as heck at each other, talked about high points, low points.  But that hour together to get our emotions out together is what saved both of us. We walked in good weather, bad weather, night and day.  Didn't matter.  That was our therapy together. 

My husband is doing great now.  He's able to get through the day without worrying about his bladder - and you will too.  He was very lucky with his ED issues, and his oncologist was very happy to hear he's off Viagra completely (I honestly didn't realize he's been without it myself!).   4 months post surgery, his bladder issues were so so much better.  ED issues too. 

If you want to talk with my husband, send me a message.  he's finally able to tell his story in order to help others.  He wants to be an encourager, and motivator for other men going through this journey.  As his oncologist said, the entire journey is a process, but there is so much positive in this journey and I am hopeful  more men will share their positive stories.  He is here to help!

Hang in there - every day it will get better!

Patti

 

Georges Calvez
Posts: 308
Joined: Sep 2018

Hi there,

I kept a daily journal for my first few months out and at about that time I had got over the catastrophic leakage but it was still pretty bad.
On a good day I would get through a couple of pairs of the Tena pants, on a bad day for example if I was driving I would use three.
You do hit plateaus and nothing seems to change for a while and then it does.
A couple of months down the line I was on pads and that was despite the radiation.
It can be a long path with progress measured in small steps but you will progress.
95% of men will regain a decent level of continence and around two thirds of younger men that had a nerve sparing prostatectomy will regain some level of erectile ability but it can take time.

Best wishes,

Georges

Josephg
Posts: 168
Joined: Jan 2013

Hi Tom,

Welcome to the Forum, a Forum that nobody intended to, or wanted to join, but we are all here.

You are seeing the responses to your outreach, and I'm sure that it is comforting to you, knowing that you are not alone.  In fact, you can see that you have LOTS of company with those of us here, who have gone through with what you are going through now.  You will also note that most of us have emerged from those dark times, recommitted to moving forward with quality of life, living the best life that we can for ourselves, our family, and our friends.  There is some real sage advice being given from these folks, in their responses above, and more advice will come from continued discussions in this Forum.

I have come through a radical prostatectomy, radiation therapy, and hormone therapy, and each of them have their own set of side effects and recovery challenges to overcome.  I can confirm to you, for sure, that there are psychological, emotional, and relationship challenges associated with recovery, in addition to the physical challenges, that you need to face head on and overcome.  Please feel free to peruse through some of my posts, as I have shared my experiences on this Forum, perhaps starting with my most recent update to my Checkup Status post located at the link below (scroll down to the 11/5/2019 update).  There are also other links within that post, where I discuss my experiences with various therapies that I have received.  Other folks here can also share specific posts with you, regarding their experiences.

https://csn.cancer.org/node/299431

One of the pieces of advice offered to you above is to find a local support group that you can join and tap into.  I strongly recommend that you follow up on this advice, as face to face discussions can be profoundly therapeudic.  I have a local support group, though I came about it in an unusual way.  During my radiation therapy, each day I sat across from two women who were receiving breast cancer radiation therapy at the same time of day that I was receiving prostate cancer radiation therapy.  Rather than simply ignoring each other, or reading from our cell phones, while we were waiting for our names to be called into the therapy room, we started a conversation.

We had over 30 of these conversations, each weekday, as we progressed through our radiation therapies.  When the first of us completed their required number of radiation therapy sessions, we all committed to stay in touch with each other, to see how we were progressing in our own cancer journeys.  We decided to go out to dinner, at least once every three months, and that was over 6 years ago, and we still get together on that calendar schedule.  We have become close friends, and we regularly email each other, talking about everything from our cancer status, to our grandchildren.  Having this channel of face to face discussion as cancer survivors has been HUGE to all three of us.  As you can see, this is a local support group to me, and it members do not all have prostate cancer!

Stay the course, John, through these dark times, and you will come out the other side, ready to contunue your life, with dignity and good quality, that was so rudely interrupted by PCa.  Life is what you make of it, through both the good and bad times.

I wish you the best of outcomes on your journey.

Joe

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