HealingWell
Search Close Search
☰

SOS, I give.

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/2/2015 3:32 AM (GMT 0)
SOS. I give!!! Lost my continence 3 times today. Once at the YMCA with trainer this am, once while cleaning the house and once after happy hour and a couple of large beers and Queso, all today! I fricking give. Almost 21 months out from Ralp and still having these issues. I am young, in great shape, and supposedly should have healed from this crap. Sex life is almost non-existent and confidence is failing. I am strong yet feeling so vulnerable it makes me shake inside. Was laying down to bed but felt the need to post this as I am at a loss. Tears welling in my eyes as I hate the change that has become the new me. I hate my new normal. It sucks.. I know life goes on but man what a crapty feeling this is to have very day. The monkey on my back has got me right now and I am struggling to kick it off. If I could do it over I probably would have let things run their course. Quality sucks right now with huge effort. I know many have it way worse but the suffering is universal in my mind and effects us all in our own way. I am working with someone but it is new and very intimidating to me. I want the old me, confident, assured, and ready for all the adventures life has to offer. Suffocating here in minnesota with the reality of what I am now. Not happy just to be a survivor today. Grieving the loss of who I was , finally, i guess.
Posted 12/2/2015 4:11 AM (GMT 0)
BB: very sorry to hear about your SEs. Others on this forum are RALP guys who may have some advice. Have you done your Kegel exercises?

The only other advice I could give is time may very well work in your and remain patient.
Posted 12/2/2015 4:22 AM (GMT 0)
There is a loss after treatment. We're no longer the same and have to adjust. Venting is a good start. Grieve, take the time to adjust and relearn stuff. The ED can be treated, the incontinence has some treatments.

But the mental/emotional side is often more diffecult. Glad to hear you're working with someone. Many of us need extra help to get on with life.
When ever you need to vent, we're here.

Andrew
Posted 12/2/2015 7:31 AM (GMT 0)
I tried to give up once. But I couldn't find anyone to accept my surrender. Nobody cared. So I just went to Walmart and bought a big pack of pads instead. At Walmart it's kind of reassuring that nobody cares. There you are, pushing around a cart full of incontinence products, and nobody cares. It's not a big deal. Nobody notices. Except for that guy I see in the mirror sometimes.

Sorry you are suffering. It sucks sometimes. Glad you are getting help.

Have you talked to your uro about, maybe a sling? They seem to work pretty well for guys who leak a little after RP, especially if they haven't had radiation after the surgery.
Posted 12/2/2015 12:52 PM (GMT 0)
I get that feeling every now and then too but I love living way too much to let my mind dwell on those thoughts. Mine are a little different though. Hope you find your way out of this.
Posted 12/2/2015 1:43 PM (GMT 0)
Neville, so sorry to hear about your problems and how it's affecting your life.
Question.... What steps have you taken to address these issues? Have you had a serious conversation with your Sirgeon, urologist? Have you consulted other experts, have you discussed surgical intervention? Biofeedback (for incntinence? )
There are things that can be done in an attempt to address this, and give you hope. Just curious what steps you've taken, then maybe we can go from there with advice from guys who've gone through this and done something about it.
Posted 12/2/2015 2:43 PM (GMT 0)
I went to a physical therapist to sort out the best way to do Kegels, and learned that they can easily be done wrong, and to excess. I would check with your uro / surgeon to see what services they offer.

And yes, I was at 8 pads a day for months on end. It got better, but not perfect. Being alive to complain is underrated.
Posted 12/2/2015 2:56 PM (GMT 0)

PeterDisAbelard. said...
I tried to give up once. But I couldn't find anyone to accept my surrender. Nobody cared. So I just went to Walmart and bought a big pack of pads instead. At Walmart it's kind of reassuring that nobody cares. There you are, pushing around a cart full of incontinence products, and nobody cares. It's not a big deal. Nobody notices. Except for that guy I see in the mirror sometimes.

Sorry you are suffering. It sucks sometimes. Glad you are getting help.

Have you talked to your uro about, maybe a sling? They seem to work pretty well for guys who leak a little after RP, especially if they haven't had radiation after the surgery.

That Wal-Mart comment really was inspiring and made my day. Might be the most inspirational thing I have heard in 3 months, made me join this forum just now after weeks of reading from the sidelines.

Not Hijacking the forum, but I am new here, turned 57 on August 19, 2015 and 11 days later I was told my Gleason biopsy score was 10, path reported GS 9 after October 13, 2015 RP surgery.

Thanks for the post, We all need encourgement and inspiration
Posted 12/2/2015 3:11 PM (GMT 0)
BvilleBrave, I hate to hear this. I hate to hear it for any man, but especially for a man diagnosed in the very low recurrence risk category. But I do believe that you can improve on where you are at now...it won't come without more effort, and there is no instant results, but you've taken some important first steps and your own will to overcome will help carry you further.

I'm going to offer two points from my own RALP continence recovery, but I will echo 142's comment about doing Kegels correctly. I also worked with a physical trainer, including at about 8 or 10 months after surgery. After I was comfortable with the concentration needed to get the right muscles engaged for Kegels, I would incorporate them into my workout routine...so, clinch, crunch, return, release. At first, there was definitely some squirting, but I do believe it helped to hasten improvement. The second point from my experience was that I cut way back on my alcohol consumption while I was fighting continence issues...my own trial-and-error found that I did better without the extra liquids, and liquids that relax muscles. My own two cents.

You also mentioned the "nonexistence" of sex life, but didn't mention what you have tried on that front. If you can share a little more about your experiences and status, perhaps I can offer more comments. It is quite common for men after RP to require some form of assistance to get and hold an erection. Others will likely share their experiences, but it's helpful to know more about your case. I was also 49 at diagnosis, and 6 years after my RP I am a regular consumer of tadalafil (Cialis) to assist.

Glad to hear from you. Hang in there.
Posted 12/2/2015 3:16 PM (GMT 0)
See, B'ville, no matter how bad a situation you think you have, these guys always have a reason to be optimistic, if for no other reason a half dozen of them have had the same problem and lived through it. Plus it has to be good to just vent ..they don't care..in fact I think a lot of these guys like it. LOL
Posted 12/2/2015 4:59 PM (GMT 0)
NKinney,

He discussed his efforts to address his ED in a previous thread ( www.healingwell.com/community/default.aspx?f=35&m=3512475&g=3512668#m3512668 ). It is fairly encyclopedic.

BvilleBrave,

The previous thread was a year ago. It sounded like things were starting to work for you in the ED department, at least a little bit. Is your disappointing sex life mostly still ED problems, or is it something else? I have an implant which fixes the ED problem but am still struggling with the problem that my leaking tends to dampen my enthusiasms somewhat.
Posted 12/2/2015 5:14 PM (GMT 0)
ntzguy,

I started a new thread for you so folks can say hello and pester you with questions.

Here's a link: Welcome new member ntzguy. New inductee to the Gleason 9 club.
Posted 12/2/2015 5:30 PM (GMT 0)
Hey brave...

I keyed in on your "let things run their course" comment.

It took me a year. I wasn't sure AT ALL that my PCa would kill me. It's darn hard to sign on to something where the cure has the potential to be worse than the disease. But....at the end of the day....i couldnt.find a doc that didn't say I wouldn't feel the effects of this cancer in 10 years. (That would have put me at 67 yo...assuming they were right).

I say that to say this. It takes a special person to be able to live as long as we outta live after being told of the consequences of doing nothing.

There's the fear they're wrong. There's the feeling of not being true to onself. In other words...there's valid reasons rational reasons for doing what you did.

We do the best we know how with the info we have are any particular time .

Don't compound problems by regretting the past.

Love ya man...
Posted 12/2/2015 10:19 PM (GMT 0)
Hello BvilleBrave,

Just wanted to reach out to you today --- sounds like you're down in a "valley" right now --- we've all been there before --- you aren't alone in this --- we're all here for you, as you can tell by all the responses you've already gotten. Band of brothers ... and sisters ... for sure !

You mentioned you are from Minnesota and I'm also from the Midwest region. I'm also in your same age range, diagnosed with advanced prostate cancer in my 40s. I'm starting on my third year of full-time treatments --- ADT shots, chemo treatments, and now ZYTIGA --- everything I can do to try to treat my cancer. I've had to learn the difference between TREATMENT and CURE, in my case. I had perfect health my entire life --- nothing gets us ready for this --- and none of this comes with an instruction manual. Some people describe it as living your life on a roller coaster --- peaks and valleys --- successes and set-backs. Everyone here has experienced all of that, so we all understand. We know the anxieties, fears, and worries that go with this diagnosis. We've all lived it, and we're in your corner --- ready to help in any way that we can.

Right now, it sounds like you are feeling some despair --- a good friend of mine calls these "speed bumps on the path of life" --- you live in Minnesota, the weather has changed, the daylight hours are getting shorter, and winter is coming around the corner. You've already posted, you identified some problems that you want to work on ... so that's the first step in working towards some SOLUTIONS ! You are getting lots of good responses and making connections on this forum --- again, another step in building up some support and finding some solutions.

In my case, I found that staying really connected to my family, friends, and faith has really helped me. I'm a school teacher and staying connected with my students and colleagues at work each day really helps me keep my head in the game. I've also stayed very involved with community projects and volunteer projects --- connecting with projects like that might be something that would help you feel "back on track" in the future.

I'm really glad to hear that you are continuing to exercise. I think that's really important --- it gives you some goals and will help you chase the blues away. It's something you can do every day to give you some control in helping to improve your health --- as you continue to work on other aspects of your health that you mentioned.

I also strive to exercise each day --- since I live in the Midwest like you do, I also face the ice, cold, and snow like you do in Minnesota. Winter weather here can be a challenge when it comes to fitness goals, so you have to get a plan going when winter arrives. I exercise outside as much as possible, but I also have indoor locations staked out for long walks when winter weather is a factor. I also have a pack of "one day" passes to the local gym, that I use now and then during the coldest parts of the winter when I need a good work-out on a winter's evening. Good place to socialize, as well ...

If you're feeling down right now, these ideas might sound out of reach --- so, just start with some simple goals --- any goal will do for right now, just to get you started --- begin a project, pursue a favorite hobby, connect with some old friends, get together with the fellows to follow some sports games this winter, find a volunteer project that would help your community --- or even consider starting something NEW that you would enjoy --- sometimes just adding a new goal or project or activity to your life can help a person get over that "speed bump on the path of life" ...

I like that ancient proverb that says, "The journey of a thousand MILES always begins with just one STEP."

Meanwhile --- just wanted to let you know that I was thinking about you --- wishing you well --- wanting to help --- and maybe shine a little light on a future path that might help lead you forward ---

Please keep in touch --- as you can tell by all the responses you've received, there's a lot of support to be found right here !

Stay strong in the battle each day,
Iowa State "Cyclone"

Post Edited (ISU-CycloneFan) : 12/2/2015 5:35:59 PM (GMT-7)

Posted 12/4/2015 3:48 AM (GMT 0)

BvilleBrave said...
SOS. I give!!! Lost my continence 3 times today. Once at the YMCA with trainer this am, once while cleaning the house and once after happy hour and a couple of large beers and Queso, all today! I fricking give. Almost 21 months out from Ralp and still having these issues. I am young, in great shape, and supposedly should have healed from this crap. Sex life is almost non-existent and confidence is failing. I am strong yet feeling so vulnerable it makes me shake inside. Was laying down to bed but felt the need to post this as I am at a loss. Tears welling in my eyes as I hate the change that has become the new me. I hate my new normal. It sucks.. I know life goes on but man what a crapty feeling this is to have very day. The monkey on my back has got me right now and I am struggling to kick it off. If I could do it over I probably would have let things run their course. Quality sucks right now with huge effort. I know many have it way worse but the suffering is universal in my mind and effects us all in our own way. I am working with someone but it is new and very intimidating to me. I want the old me, confident, assured, and ready for all the adventures life has to offer. Suffocating here in minnesota with the reality of what I am now. Not happy just to be a survivor today. Grieving the loss of who I was , finally, i guess.

And you were a G6, right? I almost feel that this post deserves it's own thread. I also have grieved over many things lost after surgery for PC, although I had an aggressive G9. Still, oh well. But this is why I tell folks to think twice about jumping up and volunteering for surgery for a low risk case, and maybe even for any case. I am plenty high risk, but I would almost certainly make some different decisions if I had it to do over. That assumes that on the 2nd chance I would be able to keep my emotions out of the decision. That is easier said than done.

But here is something positive I am thinking of for you. (and potentially for me, but probably not due to some differences in our situations, age, etc) You are 1 month behind me. But maybe it is time for you to consider if anything can be done to improve your quality of life? Like some surgical options that have a good chance of either getting you completely dry or at least a whole lot drier? And maybe even surgery to help with the erections? Both at the same time maybe?

I know, I know, more surgeries. And probably none of that has any iron clad guarantee of success and possible bad results of their own, though a lot of people are happy with the results(but probably not all). But it is something to think about, maybe something that will give some hope.

My continence issues are mostly pretty minor now, though sex is a total loss. And even though the continence is so much improved, it is still something I have to be very careful of, and something I have to think about multiple times a day, so I would still appreciate some further improvement in that area. So why don't I take my own advice? Well there are various reasons, I won't burden you with them now. However, though I can think of several reasons why it seems hardly worth the trouble for me( and cost if on Medicare?), I still do consider one or both of those procedures, and who knows maybe one day I will look into it. But if I was much wetter, I would for sure be looking at a sling or AUS right now.

God bless you, Bro, I think I can really understand how you feel. I hope you feel better soon.
Posted 12/8/2015 1:03 AM (GMT 0)
Thank you to all who responded to my venting. I really needed to let it loose and it sounds like that is normal for this process. I appreciate all the info and suggestions from those of you who have much more experience than I. In my mind I still feel in my 30's but my body has been betraying me which I think is the major part of my frustration. I still run 20-25 miles a week, do kegels daily and lift with a trainer 2 times a week. The piece I don't take care of is sharing with family and friends my frustrations with my short comings post RALP. It is in the past as one response mentioned, but I still think of it everyday as I am sure a lot of us do. Even though I am only a G6 the thought process goes down the same road as those with much worse staging. I have not been in touch with Mayo for quite sometime. I have tried VED, Trimix and Cialis for the ED. Ved gave me some Pyronies issues, the trimix was ok but was very tough to wrap my head around although I did it for a year or so, and the cialis works somewhat but I unfortunately have the side effects associated with it. I am going on 21 months from Ralp and figured I could control my outcome from a physical perspective but as we all know that is not the case. Intimacy with my wife has greatly affected how I feel about myself. The ED started to look up a year or so ago, but now it is not very consistent or durable which makes me feel she is not feeling very satisfied. We have been married for 29 years in December. She says she is fine with everything but being male you wondering if you are fulfilling needs. Effort was addressed in a response and I do understand their is no free lunch. I know we need to work for results. I hope to continue as my plan is to see the therapist for the second time. I also want to contact Mayo in regards to maybe trying a different PDE5. The incontinence is something I can't control right now and really want to try to figure it out without medical intervention. I really don't want anyone messing with the plumbing right now, but I still wet the bed as gross and juvenile as that sounds. I know about the pads and thought I was past them but maybe not. Beers with the boys absolutely contribute to this but physical exertion seems to really open the flood gates. So maybe Medical solutions aren't out of the question. I just feel so darn vulnerable with this fricking situation and I am not comfortable being in that position. I am usually in control and helping other people. I really don't like to be in this position. On that note I want to extend my thanks to all who responded and gave advice and encouragement to me. I hope to repay the favor and feel a bit selfish for asking for support, but thank you!!
Sincerely,
Kirk
Posted 12/8/2015 3:58 AM (GMT 0)
Kirk,
We're here anytime you need to vent. Listen is part of what we do.

and it's not selfish to ask for support. That's just part of life. When you need it, some will provide it. When you're able, you do your part to support others.

Keep working through the problems. Try sometime. If it works great, if it doesn't, do something else. Sounds simple but you know it's not.

Hang in there and keep us updated,
Andrew
Posted 12/8/2015 11:40 AM (GMT 0)
Bville Brave

Sending you support from Australia. Hang in there mate. 'Black dog' visits us all sometimes but it will pass.

I have a suggestion that you may find too radical. Try meditation. Find a good teacher and give it a shot. There are huge well established linkeages between meditation and healing.

Good luck fellow traveller,

Hugh
Posted 12/8/2015 12:48 PM (GMT 0)
Bville Brave,

The BF has just begun his journey through the PC valley. When he was diagnosed, I began thinking of one of the myths of PC - "it's not so bad, it's the GOOD kind of cancer". Knowing this lie is being fed to the public, I'm becoming more of an advocate of educating the masses about it. Your situation is one of the main reasons people need to know about PC, how it robs you of you.

I can't add anything to the wisdom that's already been said but know that I think of you, my heart breaks for you, and I'm sending whatever comfort possible via cyberspace.

Post Edited (chatalaine) : 12/8/2015 4:04:42 PM (GMT-7)

Posted 12/8/2015 4:24 PM (GMT 0)
This is a perfect example of why people can't look at one stage versus another and say, they have it so much worse. We are all in this together, regardless of the staging and we all face different demons.

I can't add anything that hasn't been said, other than don't give up. Be your advocate, explore the medical options, which can be many things other than more surgery or going "in". See what other options are there, go to an ED expert.

I guess what i'm saying is....if you are unhappy about something, don't just settle for it. Push for a solution, become proactive and find a way to make yourself happy, be it fixing the current solution or finding an alternative one.

Best of luck in your quest!!! Please vent anytime too!

Jordan
Posted 12/8/2015 5:07 PM (GMT 0)
Well, yeah, it's not exactly good, what cancer is...but , let's see, it could be a glioma, lymphocytic leukemia,lung cancer, pancreatic cancer, liver cancer, mesothelioma, ..those people have a lot more to worry about than their "manhood" and pissing their pants now and then.
Posted 12/9/2015 1:11 AM (GMT 0)
Have a lot of the same issues and just as pissed off or on as you are. No advice, and I do understand. Tomorrow is a new day and I will cross that bridge then, today I am with you and totally understand.
Posted 12/9/2015 4:28 AM (GMT 0)

sheepguy said...
Well, yeah, it's not exactly good, what cancer is...but , let's see, it could be a glioma, lymphocytic leukemia,lung cancer, pancreatic cancer, liver cancer, mesothelioma, ..those people have a lot more to worry about than their "manhood" and pissing their pants now and then.

Just before Thanksgiving 1 year ago, we lost our beautiful, kind 40 year old daughter in law to Mesothelioma. It took about 6 miserable months after diagnosis. Our son is still having major grief issues at each major milestone(2nd Thanksgiving just went by, 2nd Christmas approaches, her birthday, Grand kids birthdays without mom, school started without mom, etc etc) I think the Grand Kids are doing a bit better, most of the time(boys 15 and 12). Funny, this was all shortly after my RP. Needless to say, it sort of put all of my PC/RR/SEs on the back burner, and I was/am fine with that.

And of course, there's all of the natural or un-natural disasters, like San Bernardino etc etc. So, yeah, even with my G9/SV+/margin+ and RP SEs, it could be a whole lot worse.

Still sucks though! wink Sorry for the Hijack if it is one, just saw "Mesothelioma" and it got me thinking.
Posted 12/9/2015 2:17 PM (GMT 0)
Well, somewhat to the posters point, I'm growing weary of reading, this is worse than that. Or your cancer doesn't mean as much as this cancer.

Sure there are degrees, but nobody is any less important than any one else in here. To the OP, there quality of life is effected, so they have every right to stand up and speak out on there unhappiness. As his brother in the fight, it's our right, possibly duty, to support him, help him through this time.

I don't see where comparing any other cancer is relevant. We have several caretakers around her (as well as patients) who would say prostate cancer is just as bad or worse than any other, and have gone through hell.

Point is, quit comparing x to y and a to b. Every PCa situation is unique, and every form of cancer is unique. There are plenty of liver cancer patients who haven't been through a tenth of a percent of what some of our brothers have been through here, and honestly to make the comparison is insulting.

Jordan
Posted 12/9/2015 4:22 PM (GMT 0)
Fair enough , Jordan. But sure there are extremes for any kind of cancer, but on the whole you need to look at the big picture. I'll bet there aren't many liver cancer patients who have not gone through one tenth of one percent of most prostate cancer patients do.
But your point is taken...the ED, and incontinence can be a smelly, messy, embarrassing mess. not to mention just plain old depressing. That aspect is quite different from other cancers and what makes, or can make PCa such a *****.
✚ New Topic ✚ Reply
12