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

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

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

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

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

Both the Cleveland Clinic (4th Angels) and Immerman Angels offer free Mentors to Cancer Survivors. Reach out to one or both As a 17 year survivor og Kidney Cancer I have mentored to both/ Simce I am only  11 weeks post Prostage surery I watch from the sidelines.

icemantoo

...So does acceptence. Everyone is different  I'm 2 years and 3 months removed from robotic surgery and still wear a pad every day as a precaution against "stress" incontinence. I consider myself lucky compared to what might have been. ED is still present and may be permanent but time will tell. Like icemantoo I  am facing another visit from cancer and am having a partial nephrectomy in January. Right now I am focused on my PCa and , unfortunately  it can in some cases, improve very slowly. But things do get better. Live for the now and be patient. It'll pay off in the long run.

I'm a little late to post but this isn't a one time issue.  I'm a week ahead of you in timing but I can relate to what you are saying.  I think the nature of men vs the nature of women tend to cause us to internalize issues more, to our detriment.  I recall the first day of breast cancer month and pink was everywhere. Prostate cancer month could come and go without notice if one were not paying attention.  While I looked at the ACS website back when I was disagnosed, I just now discovered this forum.  It looks great.  I've engaged on the forum on Reddit though I suspect the average age of the typical PCa patient is older than the average age on Reddit.  But talking is so helpful.  I have a number of friends and collegues who have battled cancer themselves or helped a spouse through cancer.  I hve a friend who is an MD who had prostate cancer.  Assuming one has a reasonable health plan, many plans will pay for mental health counsellnig.  I think the key is to konw that the great majority make it through this phase of their life and come out stronger on the other end.  But it's natural to have doubts and it is fair to want help with that aspect of the condition as well.