Make Sure to Come Back

I came here last year in 2017 as a newly diagnosed Prostate Patient, and unfortunately I've had a hard time with urinary functions and just my whole mental state but this is not about that. This is about those who come here seeking advice support and reassurance.

After you have finished your therapy and treatment and start to feel normal , remember there are those who will come after you who will be looking for the same support you once sought out, even if you don't come back like you did before , Stop in once in a while , maybe you will have some insight or be able to give someone support who needs it , I recently went to a support group here in NJ and the organizer said it is sad that almost 95 % of those how come seeking help leave after they get it while I understand that some rather not think about this anymore there are some here who will need you.

ITs sad to see so many people read these threads with so little responses...

You can read but some much but its sounds better when it comes from someone who is either going thur it or has completed there treatment . WHen its all said and hopefully im past all this I hope I can help someomne get thtru it its not a pleasant thing to have to go thru in your own head.

P.S. IF you have had PC treatment and have had urinary problems reach out I could use some support.

John

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Age 64 Diagnosed Aug 2017
Gleason 4+3 =7 & 3+3 biopsy 11-17 , PSA13 , Brachytherapy 1-31-18 88seeds PSA10, PSA 4-10 3.21

Boost EBRT Started May 22, 2018 25 sessions .. 10 to go

Post Edited (JohnMorales) : 6/20/2018 12:47:14 PM (GMT-6)

I tend to read alot but will always be here as I am so grateful for everyone and there advice.

Thanks Guys , I learned In life if you let friends drift to far they soon become a distant memory , this club we all belong to is like the Mafia your a member for Life, and yes when we are in the early stages of treatment , we are scared of the unknown and desperate for information for those who have been there,., but for me its nice to come here and read other stories and try to help with the little knowledge I have . As for emails I can understand but ive posted mine a few times with no reply .

Paxton here is form my other tread on urinary issues

I have had the weakest of streams and very low output . and am stressed beyond , Has anyone else had issues with frequency , weak stream and low output some times I stand at the toilet and get a couple of drips and weak stream and then im done,

Im taking Flomax 2x a day for it but now sure how much it is helping . I know peeing a little is better than not at all but its getting really frustrating and doing my head in .as I am a worry wort and am concerned about retention

I try not to drink to much water so im not constantly going , but am I correct to assume if I don't drink a lot I wont get a lot volume ?? kinda double edge sword


If you have had similar experiences please share I cant be the only onw who is or has dealt with this issue.. any help appreciated., now when I get pain near my kidneys I worry its that .. it never ends with getting pains here and there .. yep a bit obsessive. I know

that's my story im 5 treatment's form being done with my radiation I had Brachytherapy Boost

I think for me is I want to feel like im not alone with some of this kinda helps

My email address is here for everyone to see. And I do respond to emails. In fact I have bared my soul to some and got little more than an "OK thanks" in return. Also a link to my blog.... first time ever trying to write a blog. It started out as a place to vent. Originally the HW link pointed to my full blog on ACS but I changed it to a mirror blog. Granted, not much there of interest to most guys, and there are far better writers here who link to their blogs.

But to be honest, I never feel as comfortable here as I do on a couple of other cancer boards. When I post here I always have to be careful to include lots of qualifiers such as "it is my understanding" and "as far as I know". Once I linked to a post I had read somewhere else and got ripped to shreds. More times than I'd care to remember I posted what I thought was an honest answer to someone's question and got flamed in response. I don't mind being corrected when I am wrong, but not verbally assaulted.

The people I've met from here are great guys, and I'd like to see more of them. And when people are helpful they are very helpful. But while I feel a need to help others, I have to be be very careful what I say here.

Hey John....

I do understand the mental/emotional stress of having urinary problems as a result of treatment. It can be debilitating. It's not something one can really get away from. With prostate cancer, with psa checks, with investigating which treatment to pursue....I've been (for me) able to "get away from it" if only for a while...by going outside...talking with others who are going through it (they're falling off trees in these forums), going for a drive, etc....you get times, if even shortly, of repreive....and you are *definately* not alone. Everyone can relate.

The trouble with urinary issues is that....well....I mean...a man has to go to the bathroom. That's not abstract. It's a reality that you face every few hours. And even when you go...and you don't go...not knowing how things will work out before the end of *this* day can be exhausting, wearing and depressing. *this* day is different than *some time* or *this summer* or even *next week*. *This* day is EVERYDAY that something is having to be faced..and having to be faced...every few hours...or even...every few minutes. And not knowing if you'll end up in the hospital in 5 hrs with retention is absolutely debilitating to have to live with *this* day...*every* day.



My stricture was opened up once. I thougtht (hoped?) that was the end of it. And it's that hope that keeps us going. But the day after last Christmas...I began having problems again. Those problems continued for about six weeks. Then they got better...then...sometime in Feb or mar they got worse again. This isn't something that one can really go to just any forum and get help with....as...it's not something most people have experienced....and therefore.....I think...at least in my case...it can really make you feel an outlier. Someone who doesn't "belong". When complications begin to pile up....it's difficult because the fear is....that....people will begin to see the resentment....the bitterness...that comes from having what can go wrong...having gone wrong. And then the fear is...."They can see that I'm po'd....they can see that I'm resentful....and they're thinking to themselves...'That guy's got a bad attitude is his problem'". Well....yeah....I can have a bad attitude....but it's uncool feeling judged by people who've never experienced what I'm going through. And I also know that some others on here do not want to hear my input into what they percieve as a problem I do not have. They're thinking the same thing...."That guy doesn't know what I'm going through. I'd appreciate *not* hearing what you've got to say...thank you very much!"


Anyway....We all have to travel our own paths. And our paths are not all the same. Some, in fact....do...have it worse than others. (trust me....and I know you don't have to be told this...that I knwo people on here have it worse than I do as well). So...I guess we just look to see where we might be able to help....but in the main....the majority of people are able to relate to the fear of newcomers...that's a fairly common fear. The more things we share...the more we can relate with each other. If we do not share certain problems....it *is* difficult....it's difficult for the person who needs the help...and....it's also difficult for the people who don't know how to help.


As far as email is concerned....I've never *once* emailed another person on this forum and not gotten a heartfelt and understanding response from them. And I think that's so cool. People on here really do care.


There's been one person on this forum...and I'm not going to name him in public...but he sent me an email....unsolicited.....that said something to me that was so kind....so cool...and so inclusive...that I didn't know what to think or do. I don't have to name you....you know who your are.


If you wanna talk pee talk...feel free to email me anytime. It's one of the few things I'm proficient at....not peeing good.

I agree we all have a responsibility to give back. I will say it can be sad to see so many guys have a recurrence and I know one guy who finds many of the posts depressing. I read and comment on something most days and have spoken with a few guys about my experience. I like the saying we are in this together. Denis

Funny you would bring this up. Just yesterday as I drove my wife and I to my doctor I had her read the posts in my diagnosis thread as well as another thread that was pertinent to that particular appointment. She made a comment asking why there are so many posters since most of them have finished treatment. We talked about it and I told her that I planned on being one of those guys. It’s just the right thing to do. I’ve now had numerous individuals take time out of there lives to help guide me forward and Many have mentioned they are “paying it forward” because someone was there for them before. I would hate to think that at a point in the future I had the perfect life experience that would help someone but I wasn’t here to share it.
I know it’s easy to say that but I do hope I follow through with it. As for flame outs and making critical comments I’ve learned many time it’s easy to misinterpret the tone of a post. Many time I’ve had the best intentions but my writing doesn’t come across the way I meant for it to sound. I can see where on a board where we are all highly stressed because of our disease misinterpretation would be even easier to occur.

Island time, jmadrid, convertible ... you all say things I wish I could quote and respond to individually. Yes, sometimes this board can make me feel uncomfortable, and more than once told myself that I would never return, just quietly disappear and sulk. But then my wounds heal and I am drawn back again. Honestly I have learned more here than anywhere else, if there were a way to grade and measure each bit of knowledge.

And once, only briefly, I did block one forum member, but reinstated him the next day, as I believe that every one of us provides valuable information that should not be ignored. Blocking due to one or a series of offensive posts would then keep me from learning something, perhaps something useful. The attraction of this board over others is that there is a greater diversity here, people with a broader range of experiences than I can find elsewhere.

I do feel bad for those who are far worse off than myself. I sometimes find the experiences of the G9-10's depressing or disturbing, but I also see in them the bravery that they exhibit every day, as one must when basically having a death sentence. And I need to hear those heroic tales (if you will) for I know there are people who are far worse off than myself, and I need to be reminded how fortunate I am.

My signature on another PCa msg board is Everyone you meet is fighting a battle you cannot see. There is a reason for that. It is easy for some to criticize the choices that others have been forced to make when you were not in their situation. Each day my wife and I must make decisions realizing that either one of us may be gone. Is my cancer really gone? Will hers come back? These are REAL unknowns, and each is potentially deadly. Walk a mile in another man's shoes.

So I keep coming back here, because I might learn something. And often I do. But sometimes when I extend my hand to help another, I end up getting my hand slapped. That makes it difficult to keep coming back.

P34 said...
.... I had my PSA tested in April and it came back at .1. Went back in June and it was .2. Not what I wanted to see. I go to the urologist today. I'm sure he will recommend adt and radiation. I'm pretty nervous but we'll see what happens. I'm not thrilled with adt due to all the serious side effects I've read about.

It certainly sounds like you are a candidate for the 'trifecta' of Lupron and radiation. No way did I want Lupron but the radiation oncologist would not treat me without it, so I reluctantly agreed. The effects are different on guys, I had a tough time with it but just stuck it out. I think the loss of quality of life for several months was well worth the outcome.

JohnMorales said: ITs sad to see so many people read these threads with so little responses...

You can read but some much but its sounds better when it comes from someone who is either going thur it or has completed there treatment . WHen its all said and hopefully im past all this I hope I can help someomne get thtru it its not a pleasant thing to have to go thru in your own head.

P.S. IF you have had PC treatment and have had urinary problems reach out I could use some support.

Some people here are friendly 'givers', some are 'takers', some are lurkers, and I think some are silent because they don't feel like they have the expertise to contribute. I have an extensive website with many modifications and improvements I've done to my motorhome over the years and usually once a week I'll answer a emailed question about this or that. Rarely do I ever get a thank you in return. One time I sent a spare part to somebody who needed it and I told him to contribute $20 to his favorite charity for payment. Never heard a peep back from him.

I'm an administrator on a Jeep forum and staff on a large RV forum. We have a good bunch of guys on the Jeep forum but sometimes I have to lower the hammer on squabbles. The guys know I have a zero tolerance for this so it rarely happens. The RV forum is a whole different critter. Squabbles, flames and rants are fairly common but there are so many staff there keeping an eye on things threads don't stay out of control for very long.

I try to contribute here based on my personal experiences with PCa and treatment since I had so much help here when I was first diagnosed. There are others here with significantly more medical expertise and I stay out of those discussions.

Since I've not had any urinary issues (yet), I have no words of wisdom for you.

This forum, like many others I have been a part of over the years, is heavily influenced by people having to make very difficult and personal choices. But it is different because the choices made here frequently have a profound impact on one's quality of life and the length of one's viable life. Those choices often are far more significant to an individual and their respective family than one I might make on a fishing or RV forum. Those forums get their share of controversy also, but ultimately the end result of a lack of civility on one of my fishing, boating or RV forums is of very little consequence. Controversies on this forum, limited as they are by our vigilant moderators, are understandably fraught with highly personal emotions that run the gamut from extreme anguish and fear to total confusion and sometimes a loss of hope. Let's face it, this disease attacks us as a group "below the belt" which is all entwined with who we have become as men in our families and in our society. The threat of potential loss of life, loss of sexual ability, loss of dignity, and the threat of becoming a "burden" on loved ones, is no small concern. I apologize up front to anyone that I offend on this site, but I have yet to communicate with anyone here who ultimately didn't have the same concerns that I do, so I try to be understanding of some who might rub others the wrong way occasionally. Sometimes, I believe we as a whole, just need to get over ourselves rather than agitate issues and get the focus back to what the OP started.......giving back. I floated along through life with no significant health issues until being visited by PC at the age of 69 and my experience dealing with such things was minimal so the support I received on this site has been absolutely invaluable to me, both emotionally and with the nuts and bolts of treatment issues.
As to emails, that is an individual choice, but I definitely feel that not participating in personal emails from this site limits the scope of one's ability to be helpful on a very personal and detailed basis, particularly for a member who sees your PC experience as similar and is seeking information and emotional consolation. To each his own and I wish all here good health and wellness going forward.

Skip

19tarpon47 said...
This forum, like many others I have been a part of over the years, is heavily influenced by people having to make very difficult and personal choices. But it is different because the choices made here frequently have a profound impact on one's quality of life and the length of one's viable life. Those choices often are far more significant to an individual and their respective family than one I might make on a fishing or RV forum. Those forums get their share of controversy also, but ultimately the end result of a lack of civility on one of my fishing, boating or RV forums is of very little consequence. Controversies on this forum, limited as they are by our vigilant moderators, are understandably fraught with highly personal emotions that run the gamut from extreme anguish and fear to total confusion and sometimes a loss of hope. Let's face it, this disease attacks us as a group "below the belt" which is all entwined with who we have become as men in our families and in our society. The threat of potential loss of life, loss of sexual ability, loss of dignity, and the threat of becoming a "burden" on loved ones, is no small concern. I apologize up front to anyone that I offend on this site, but I have yet to communicate with anyone here who ultimately didn't have the same concerns that I do, so I try to be understanding of some who might rub others the wrong way occasionally. Sometimes, I believe we as a whole, just need to get over ourselves rather than agitate issues and get the focus back to what the OP started.......giving back. I floated along through life with no significant health issues until being visited by PC at the age of 69 and my experience dealing with such things was minimal so the support I received on this site has been absolutely invaluable to me, both emotionally and with the nuts and bolts of treatment issues.
As to emails, that is an individual choice, but I definitely feel that not participating in personal emails from this site limits the scope of one's ability to be helpful on a very personal and detailed basis, particularly for a member who sees your PC experience as similar and is seeking information and emotional consolation. To each his own and I wish all here good health and wellness going forward.

Skip

Very well stated! You hit the nail on the head with surgical precision.

Im happy I wrote this , there is a lot of good information that can be had here and a lot people can contribute im learning every day I come here , when I look for help with my questions , I learn about the whole of PC the good and bad , you cant get that from anyone , but those who are living with it every day some of us are more fortunate than others, so everyone's needs are different ,

Some one emailed me and said why do I keep going on about urinary', problems and my reply is that is my problem and i'm still looking for answers and someone who has gone thru what I am going thru that maybe can shed some light and experience to it .

anyway im glad im here, and I don't feel alone im amongst brothers who want to live there lives .and are searching for help on how to do that with PC

PS Island Time you got Mail


John

Post Edited (JohnMorales) : 6/21/2018 6:40:02 PM (GMT-6)

Nothing to add....fine thoughts, as I've had a litany of urinary issues. Keep the faith and try to help!