Wife: Stop Reading Those Forums
She has a valid point.
As I stated in another post, forums are highly tilted platforms - I know, I've created and administered very many of them. On forums like this you find that people come here for answers and if everything works out for them they put it behind them and the vast majority move on, and that makes sense. What remains are a few cheerleaders that came out the other side without issues and want to encourage others (I still do this for ex smokers after quitting over a decade ago), and the rest are people who still struggle.
When you read post after post of bad news - recurrence of the cancer, treatment side effects, etc, it can really pull you down. It's easy to take the viewpoint of "I have only the slightest chance of making it through this with only a new way to hold my bladder". I've read the studies, the majority of men are fine post op, but it's easy to think of it as a snowballs chance in hell. Even if it's 95% success, it's so very easy to fixate on that 5%.
This is what is happening with me. Every time I spent a lot of time reading this stuff I end up falling apart and last night was a pretty epic one. So bad that I woke up every 20-30 minutes dreading every aspect of my life post op (in 6 weeks). To the point of me seriously considering canceling my surgery and just letting nature take its course because if it's just going to come back and screw me in three years then why even fart with it.
Today I got my pre-op MRI so they have a good image to use for the surgery and while I had only an hour or so of sleep I was still pretty blue but not as totally in the dumps. It only took a nurse hooking me up for my contrast IV to say "so, it looks like you have a pretty big surgery coming up huh?" for me to lose it. I couldn't even talk and I could not stop tearing up for the next two hours. She saw the impact it had on me and, bless her sweetest heart, she apologized profusely and was so very compassionate and even held my hand to comfort me. That's how much on a razors edge I am right now.
I had some level of depression after my kidney cancer, but it can hold this one's beer. I've been hanging on by tooth and nail for two months trying to keep it together. As I explained to my wife: this takes 90% of my normal coping energy to manage, I have 10% left which means I have to manage running businesses and dealing with day to day with 10% in the tank. I'm trying to get in with a shrink to help me find better ways of dealing with this, but I think one way is for me to regiment what I read here.
I don't know what that regiment looks like right now, but I know I have to try to choose to read only certain topics and not get "involved" as is my nature to do and really deep dive into the topics because it's seriously screwing with my head. Maybe it's the dual cancers, maybe it's the silly season and maybe it's just me spending too much time reading negative when I really need to read positive.
This is a long post, partly as a pseudo journal for myself but also for other guys like me that have their treatment on the horizon and don't know how to cope with it.
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
I understand how you feel. Keep supporting people here and help yoru brothers, its the best thing you can do . Also , you get to talk about your issues . Some issues you read about can be negative , but people would not seek out help if they were OK . Let us know how surgery went and MRI . I care ! God Bless you Sir . Thanks for your comments and your wish to help others ..... James on Vancouver Island
I will echo, parrot and plagiarize every single post on this thread and say one more thing: THIS is where you come NOT to lose your mind….NOT to be depressed….and NOT to fear the unknown!
None of us are any different than you; you will learn just how BAD some men have it and you will thank your lucky stars you ‘only’ have what you have. I know I certainly have become much more thankful and have been given greater strength and resolve due the experiences of many in this forum…you will too!
I just found this forum the other day while searching for more info on my perceived BCR. I belong to many other forums mainly in support of various hobbies and interests. I don't involve myself in those that are argumentative, false information spreading, social media based etc. So yes, while reading forums can possibly sway your emotions falsely in one way or another, the basic intent of this forum seems grounded in supporting each other and simply providing information of what happened 'in their case'. I find that aspect incredibly helpful. Everyone is different and responds to treatment differently, but in general these stories prepare you for what is ahead. You might read a few and find out that hey, things aren't that bad. Or find some information about available options that haven't been discussed in your case. But yes, use it for balance. Don't let it take you too low or too high. Interpret what others are saying, apply it your situation and find some common ground and stability.
Cancer is cruel. We are all here for the same reason. No one has a "better" cancer than the other. Some might be undetectable and older in life, others might be new to the club or others on their second rodeo. But we all have it. We all have to remain vigilant and will always be looking over our shoulder. Don't let it win mentally. A strong attitude goes a long way. I wish you the best in your journey.
Most of us have "been there, done that." It is normal for we humans to withdraw with traumatic news. YOU WILL BEAT THIS. My PC hit me out of the blue and I too went through some "stinkin' thinkin'" for a while.
Another reason is that after dealing with kidney cancer you now have to face a different form of cancer. That would be overwhelming for anyone. Don't be so hard on yourself. Cry, sob, laugh, live, love. The surgery will extend your life greatly, albeit it will be changed.
We are here and you can PM any of us any time for support and help.
I agree on all counts. Kidney cancer had me in a dark place for a long time because I was told if it came back it would be mostly untreatable, so I waited for the other shoe to drop. But, in the end, I had a spare and my life didn't have to change hardly at all outside of not being able to take certain types of medications or eat too much of certain foods.
This one is different, my life changes, my abilities as a man change (or could be broken), my ability to live life without diapers change (or could be broken) - and that last one is a biggie for me and I know it is for a lot of guys.
Reading study after study the one concern of the vast majority of men is the quality of life when they have PC, it's about 80% if I recall correctly. They can deal with the loss of the prostate itself, but the after effects are why they chase every possible alternative. And, most men also agreed that ED, while horrible, was at least somewhat manageable, it's the incontinence that concerned them the most. And it's these factors, the QOL changes, that have driven every new procedure and technology related to treating PC - again, from reading scientific journals on the topic.
And, I'm feeling the same. Yesterday broke me, I'm still broken from it. I know what's going on but it's not a light switch to turn off. I'm not a "dreader" by nature, but this I dread. I might wake up and everything is A-OK, but it's the "or I might not" that I obsess over.
I'm doing what I am able to control. I'm talking to my first shrink tomorrow, my wife is very supportive, I just need to find tools to cope because this cannot continue in this state.
If it is any consolation, I had surgery September 16th of this year and have been continent for 3 weeks now. No diapers or pads. If you do your kegels before and after surgery it really helps.
Please know everyone on this sub-forum support you and are here for you.
Thank you for sharing that. I've been working my kegels very hard with both my trainer and a pelvic floor therapist in hopes that I have good results. It's within my control, so I have to try.
Survivor5280: (I posted a reply to an earlier message string you started and that posting summarizes my journey with PC, and I won't repeat that information. I just wanted to add the following) -
When I received the unexpected pathology report on my biopsy I very quickly realized that there were two paths available to me at that point: do nothing - and probably have a considerable shortened life span, or treat the cancer. The particulars in my case led multiple doctors to recommend surgery.
It was daunting to think about the 'what might be's' after surgery, but it was also very sobering to think about what would be ahead if I didn't do anything. For me this fundamental realization - that I really had no practical choice other than to go ahead with the surgery - made it easier to come to grips with the unknowns that lay ahead.
I wish you all the best as you move through these next weeks. As others have offered, I would be happy to communicate via PM.
I forgot to say I’m 71. 😁
I came to the same realization that all the moaning and groaning didn't change the fact that it's got to come out. Unlike you, though, despite that I'm very sad at what I may stand to lose. I realize the lack of logic in that because I could be just fine, but I also know I'm losing half my nerve bundles and it's hard to just ignore what may come to pass.
In a few months, when this is done and behind me I may have a very similar take as you do, but it's tough to come to grips at this very moment.
Thank you for sharing with me.