THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2014 SO THERE IS NO UPDATE.
Glen's story is a long one, well written and informative. He pulls no punches so anyone who is of a sensitive nature may find some of his descriptions and views a little more than they wanted to know. However, we know from what many respondents have said that there are a lot of men who want to know about the issues Glen covers. Because it is such a long piece, it has been divided into the following Volumes - you can go to the one you are most interested in if you do not want to read through everything:
Volume I: Diagnosis
Volume II: You and Your Urine Bag
Volume III: Healing
Volume IV : Erections - What Most Men Won't Talk About but They All Want to Know About
Volume V: Life Goes On
VOLUME I DIAGNOSIS:
If you can't find answers to those, "not talked about" questions, then read this. I am living through my operation now as I write this and wanted everything to be as fresh as I can remember it. If I help you to make up your mind, one way or the other; that's good, it's my intention to be helpful.
I am not, nor will I ever be: politically correct, so if you don't like my language and candid descriptions; get over it. You're reading this website because you have cancer and need to know what others before you have gone through in an effort to help decide for yourself, "what do I do?"
You have probably read a lot of negative stuff or read about endings that aren't happy, like in the movies. It will depress you and make you stop reading and trying to decide what to do for a while, because a lot of it is negative.
I think a lot of it is depressing because guys that have had good experiences don't talk about it much. That pisses me off because I feel that these people suck; they could be very helpful to you, the reader and they shirk their responsibility to inform you because they don't have time now because they're OK or because they just feel that they got lucky and so they just say nothing. I'm a work in progress and I can give you what is supposed to be a happy ending story, but the story isn't over yet so we'll all have to wait and see.
For the sake of me not having to type till I'm 48 let's say this:
I have a wife, maybe you do too, or a girlfriend or a boyfriend or a husband; I'm going to say "wife" all the time and you fill the word in for what applies to you.
I was 47 when I found out I had cancer. I'm 47 now and just had the operation. I am sitting here with a urine bag on my leg, waiting to take my first dump [call it whatever you want] in 4 days since the operation. [the politically correct would call it a bowel movement]
My [PSA] score of 3.4 isn't so high that you would get scared and shocked; it's only supposed to be 2.5. When I went to the urologist after this was known, he told me that guys my age had come in with a number as high as 7 and they didn't have cancer.
He told me that there was a 95% chance that I didn't have it. He told me that if I did have it, it grew slowly and the numbers would rise and then I should definitely have a biopsy.
He told me if I wanted peace of mind, to have the biopsy and put this issue to bed.
Most of you reading this have already had the biopsy and know your numbers, so I don't have to tell you that the biopsy is not a wonderful experience.
[GLEN HAS WRITTEN A GRAPHIC DESCRIPTION OF HIS BIOPSY EXPERIENCE. YOU CAN READ IT BY CLICKING THIS LINK: GLEN'S BIOPSY]
I decided right away to have surgery after I got the news from my urologist. He was an unhappy person and really hated his job the day that he told me that I had cancer. He told me that I was lucky because of how much there was and where it was. It upset him to tell me this news.
For those of you going through this now, you won't feel lucky when you get told you have cancer and you could be incontinent and impotent and all this other bad stuff.
I didn't know what to feel except that I knew I'd get rid of the cancer but my life would change and it would suck afterwards. I drove 30 miles past exits that I should have taken because my mind was racing about all the bad things that could happen. I had some very unproductive days at work, walking around in a stupor looking for tools because my mind was torturing me about the "what if? " stuff. I didn't want to do anything or believe that it had really happened to me; and I had just scheduled an operation for three weeks away!
My sister called me from Texas and had a colleague of hers talk to me about his seeds. He's about 53 and gave rave reviews about them. I talked to him and thought that this was the way to go. No uncertainty about the waterworks or sex. No big surgery. I would be OK and this would be pretty easy to deal with because my sisters' colleague told me so.
I cancelled my operation. I went to a radio-oncologist and got the real deal on seeds. It was a very good thing that I went and saw this doctor. I'm a visual person and he connected with me by showing me the actual tools that they use and how they got the seeds into the prostate.
You'll be shocked to know that he also told me it was in my best interests to have the operation and not do the seeds. Seeds have been done for 16 years. The results at getting rid of the cancer are almost the same as the operation. So why would I want to go through an operation?
For those of you in your 40's, it's simple. You're at about the half way mark in life; you have another 30 to 40 years to live. You should be having sex till you hit 70's at least! Seeds should kill the cancer, then they kill the prostate, then you get incontinent, then you get impotent. Your prostate is dead! The nerves attached to it die too! Seeds ain't all their cracked up to be.
Want to call me wrong? Go to the radio-oncologist and see how it's done. See the tool that they'll be sticking under your balls and shooting seeds the size of rice into your gland while they have that camera up your ass. It's not the easy way out!!
NOTE: ask if this fails and you still have cancer what they will do?????? The answer will be about hormones and chemo and radiation and all kinds of shit that I didn't want to do. I was told that what radiation does to your organs is what a microwave oven does to food; and your organs stick together, so god help you if you ever need an operation for something else.
So I said, "fine, if the seeds don't work, then I can have the operation" and the oncologist looked at me and told me that "very few surgeons will even want to look at you after you've had seeds done. The gland gets smaller and soggier and very difficult to operate on".
It's all about the Benjamin's guys! No doctor really wants to get sued for trying to do an operation that is much more difficult than if you never had the seeds in the first place.
So my next plan of figuring what to do because I didn't like the answers that I got because I'm a chickenshit that doesn't want to get cut open and maybe never have sex again with out some kind of device or aid, was to start over again. [for those of you that are grammatically anal, I do run-on sentences because that's the way that I talk. Just re-read the sentence to understand me better].
By starting over again it meant just that; re-read stuff and maybe understand things better. My wife got me a copy of the book on prostate cancer from the Mayo Clinic and I read only the chapters that applied to me. Based on your numbers, you will understand what to read and what not to read. The reason I didn't read all about chemo and radiation and seeds was because they were not for me so why read them? I did not read about what happens when someone has the cancer with numbers larger than mine. I stuck to the basics in the book that were all about me and understood it to the point where I knew that having the operation was what I should really do.
This made me more scared. I reached out and talked to one of my customers that is older than me and had the operation 14 years ago, when "nerve sparing" wasn't done. He was very "matter of fact" about the whole thing and told me not to be foolish and have the operation. He had sex!
No! He did not have an implant either, he did injections. Kinda made my skin crawl. I didn't want to go through that, and I fell into the, "why do I have to go through this shit" routine again.
You know what? You're gonna die a long and painful death if you do nothing. My favourite musician is Frank Zappa. We all know what happened to Frank. He's on his "final tour" I miss Frank. He used to come to town every April and October and you had to go see him because you had to.
I changed my diet and got my PSA down to 2.9 so I should have just done "watchful waiting". For me, that's not being able to make a decision and being even more chickenshit, in the hopes that some miracle cure would happen sometime soon, so if I still have my prostate then I'll be healed. Medicine moves too slowly because they have to test and test and test to prove that something works so that they, [the doctors and drug companies] don't get sued by us. There's that theme again; "it's all about the Benjamin's"
Surgery, on the other hand, progresses more rapidly because there are doctors that have compassion and feel just like it's them lying there as they operate, they want to come up with better ways to get us well and give us the ability to be wholesome again, even if that involves a little Viagra.
Think about it! There are for sure some guys that are surgeons that do it for the Benjamin's and really don't care. I think they suck. I hope they have an operation by another Benjamin grabbing prick and they get what they deserve. But do you think it's easy for a doctor to give you bad news when he was the one responsible for it and really had no choice and did the best he could and still has to tell you something upsetting? Of course not! These are the guys that lose sleep over, "how to build a better mousetrap" and that's why, ultimately I came to choose surgery over all the other choices.
About the surgeon: mine was Dr. Jack Smith in Boston at St.E's. My wife liked him the minute we saw him. I spoke to him three times and he tried to explain everything in a way that made me understand what I needed to know so I would be comfortable. You guys really need to see the model that he has, I'm sure it's one of those things made by a drug company or something and lots of other doctors should have it in their office too! I think it should be required and you should see it when talking about surgery so that you get the true visual; because for me, it was the single thing that put me over the top in deciding to definitely do the surgery; even though I really had made up my mind and said so.
This model shows the prostate in actual size and how it looks inside you as it is attached to the bladder. There are 4 examples of it showing all stages of prostate cancer. You understand how they work with what is left and how they attach your uretha back to the bladder and why you get the catheter. It makes total sense when you see it and I would equate this with the "Niagara Falls analogy" - if you've been to Niagara Falls, you know that there's being there and seeing it on a postcard just ain't the same. You just won't get it by looking at the illustrations in a book like you will looking at the three dimensional model.
And for those of you who are still reading and say to yourself, "he mentioned the name of the surgeon, I'm from Minnesota why do I give a shit who the surgeon was?". When you become a member of the club, you mention the surgeon because you just have to, and if any of you are from Boston, then you have my endorsement of this man and his staff and you can go see him for yourself and decide if I am right about him being one of those "better mousetrap" guys.
So now for the actual surgery. I will be brief about it. If you contact me I will tell you every detail.
When I got wheeled into the operating room, I had to make jokes about all the tools that they had in there. They had so many stainless steel tools you would have thought they built racecars in there. I don't think you could see so many clamps lined up in a row if you went to a surgeons supply store.
I got to say what I wanted to say as my last piece and it made me feel more comfortable, even though I started to cry. These people all around me were compassionate and caring and I could just tell; I felt it. They told me exactly what would happen again for about the fourth time and assured me that I would just wake up and it would be over and that I would hurt, but I would be OK.
They were right. When I woke up in the recovery room, my doctor told me everything and assured me he did his best. They didn't find any cancer anywhere except in my prostate. They felt that I would be "dry" very soon. I specifically remember the doctor being so proud about how he could just about guarantee it because he had good things left to work with once the prostate was gone. He spared all of my nerves and felt that if they're going to come back for anyone, it would be me because of how he was able to peel them of the prostate.
It's also about age. You feel like a piece of worthless shit when you find out all this stuff and you feel it wouldn't be so bad if you were older and had had all the sex that you wanted to have. Well my age is my allie! [sp] I have more recuperative abilities than anyone that is older than me, with exception to you 50 and 60 year olds that have a six pack for a chest. So for you 40 somethings, really read and discuss this!
Your age is going to help you. If you have time before you must get surgery, take that time to try and lose a few pounds and work out your arms and legs. You'll need every ounce of strength to move in the bed and get up off the bed and out of a chair. I'll tell you if doing the Keegels works after I find out for myself, but I did them. Do them in your car or truck on the way back and forth from work. You're helping yourself, not someone else! Be selfish and try to do these things before surgery, no matter what your age is!
About 12 hours after the operation is when all of the anaesthesia wears off. This is when you go through serious pain, but once they switched me off morphine and onto percoset, after about 5 hours I became human again.
About walking. They [the doctors] challenged me to walk early and walk often. The very next morning I had my doctor under my arm and my drug dispensing machine in front of me for balance and a medical student carrying my bloody urine bag and proudly displaying my ass out the back of my Johnny as I "penguined" down the hall of the ward. They were happy that I had the stones to take the walk and so I made them take a second trip. That's what you can do for them to show that if they can do their best for you, you can give them your best back.
They wanted me to take two trips that day, I took four. They wanted me to take four trips the next day, I took 8 and two more at 10:30 at night because I couldn't sleep. It is the single hardest thing you're gonna do. The first time you get up off that bed, you can't quit! Push through the pain and get your ass up! You'll feel the stiffness start to leave your legs after about 20 steps and your stomach actually begins to co-operate by letting you stand erect and not bent. The walks help! Do the walks!
They wanted me to sit in a chair for 15 minutes, the first time I couldn't do it, the second time we got a chair with a higher bottom and a pillow for a cushion and I sat there for two hours cataloguing my CDs. [I have a music server and put into it, the tracks of albums that I like and leave out the rest, so I write the track numbers on little stickers on the back of the jewel cases]
My "JP" [which is a ball that looks like the float inside your toilet] came off me on Thursday, [I went in on Tuesday]. The JP is a wonderful device that you worry about rolling onto while you're in bed and it fills with blood so that the urine bag doesn't look so scary. Don't worry about rolling on it as you can't roll because you hurt to roll so you don't. If you are a person that doesn't sleep on his back, you will! You have to! Psychologically, with all the shit that's connected to you, getting all those cables and tubes wrapped around you isn't recommended, so you learn to sleep on your back; I did.
My doctors told me I could go home on Friday morning. My goal was to go home Saturday morning to see my sons' basketball game. I decided to go home on Friday because the doctors made me understand how to take care of myself and what to expect. They told me I could stay through Saturday if I wanted.
If you don't have a lot of pillows for your bed, then get some before you get surgery. Your bed doesn't raise and lower the head and the knees, you need the pillows to get back to feeling comfortable like it's a hospital bed.
It feels great to be home. My son played four games today and won three and I saw them all and he saw me. So if everything doesn't work like it used to after I heal, I can deal with it, because I have to and I will. My wife has been a person that you could erect a statue of in town square because she has been there every step of the way. She let me make whatever decision I wanted and thought that I did the right thing. I figured if she was comfortable with my decision then I should be too. I am.
Now let's see what happens. After the wonderful "Foley" comes out of me and I'm off the urine bag, I'll write again.
I hope I helped you figure out what to do or how to go about it so that you feel you are making the right decision. You have to do what you feel is right for you, even if it's not what I did.
[GLEN SENT IN VOLUME II OF HIS EXCELLENT STORY SOME TIME BACK BUT IT GOT LOST IN SPACE (WELL, CYBERSPACE ANYWAY). HE WAS GOOD ENOUCH TO RECONSTRUCT IT FOR US, WHICH IS WHY THIS, VOLUME II, WAS POSTED AFTER VOLUME III WHICH FOLLOWS BELOW. CONFUSED? DON'T WORRY, JUST CARRY ON READING.]
VOLUME II: YOU AND YOUR URINE BAG....or 18 to 21 days of being "uncomfortable" unless you take these tips.
I am writing this four months after my operation. Part 3 was written at the actual time that I was living it. Part 2 got lost and this is the third re-write. As a result I have more information for you.
I was visiting my gastro-enterologist last week. He's in his 70's and obviously still practices medicine. He had a TURP (Transurethral Resection of the Prostate). When you have a TURP, they put in the tube so that your prostate and urethra can heal. They keep the tube in for about 3 weeks for a TURP, just like they do when we have a prostatectomy. [This would be rather an unusual procedure. In most cases the catheter is in for only two or three days - that was also my personal experience.]
Having spoken to a few guys since my operation, we unilaterally agree that the tube sucks, and is the worst part of the operation.
Now can you imagine that they put a rectangular steel tube over the incision and spread back your stomach skin and have a hole the size of a football to work with???
Note: football is football, soccer is soccer. I didn't say a soccer ball. Basically, what the doctor showed me was a rectangle about a foot wide and 18 inches long.
Good thing I slept through this part.
The doctor moves all of your organs around and out of the way so that he can get to that tiny little prostate gland that's buried deep inside you. He needs room to move around. [have to spare those nerves if there's no cancer peeking through the prostate]
So when I tell you that after going through all that, the tube sucks worse than the operation, I'm trying to draw a picture for you about this being a big operation, and it sounds all scary, and a little tube 3/8 of an inch round is the worst part, I intend to ease your mind.
The best part for you is: I experimented and gave my doctor ideas that he hadn't thought of, nor did any others before me. If they did, no one's talking about it.
So here we go.
So that you know about the tube. It is actually two tubes in one! There's a small tube that goes up inside to the top and into a balloon. The second part of the tube is where the urine passes through and goes into the bag.
The tube that goes into the balloon has a place that they insert a big syringe with saline solution and they inject that water up into the balloon. The balloon inflates up inside your bladder so that the tube can't slip out, and then the place where the syringe injects the water is tied off. The day you get the tube taken out, they will drain out the saline solution with a syringe and you will feel that balloon collapse! It doesn't hurt at all! The whole thing is just weird and hopefully the last time you or I will ever have that frickin' tube inside us, so you'll remember it just like I'm telling you.
So; does the tube hurt? It must or else everyone wouldn't say that it sucks, would they?
Actually, it doesn't hurt because it goes all the way up inside you. If you bend too much, or stand too straight without making sure how everything is positioned, it will pull. After a few days of pulling on that tiny little slot on the end of your penis where the urine comes out, it starts to get sore. Then it gets more sore, then it gets more sore, then you start making a chart and counting the minutes until it comes out; this is about the fifth day after the operation.
If your wife had kids, you'll remember how during the eight month she exclaimed, "Get this thing out of me, I'm sick of being pregnant!"? Urine tube, third trimester.....kinda sorta the same except the urine bag doesn't kick you in the stomach; but it does bungy jump off the end of your cock when it gets full and slips down your leg.
Remember, I was 47 and went home after three days. Some of you guys that are older than me will most likely stay in the hospital a few days more because you need to; you're older than me.
So here come the tips on "You And Your Urine Bag". TIPS!!!! Ok, bad humour.
First, shave the inside of your upper thigh on both legs. Shave the front part of your upper thigh. Shave very carefully, get all the hair.
You need to swap legs with the urine bag. You need to give each leg some time off. You need to use the industrial strength tape that they use in the hospital that will make the tube stay where you tape it to your leg.
You want to use two pieces of tape. The tube extends about 8 inches out of your penis and then affixes to the tube that connects to the urine bag. You want a piece of tape on the tube that connects to the urine bag also.
You will have two urine bags. The small strap onto your leg model; and the big "overnight" bag.
Now about the two pieces of tape. Ultra important.
When the nurse tells you to "Strap this on up high on your leg", remember she's telling you what she was told to tell you. Worst thing you can do is to strap that baby up high.
When you put it on it's empty!!!!! It fills up!!! It does not slide gracefully down your leg. All of a sudden, you realize that it is full and heavy because it drops right down your leg. It weighs about 5 pounds and it's filled with liquid. Unless you venture onto the S & M websites and are into that sort of thing, there's no pleasure when the bag drops down your leg!!! It hurts!!!
So don't listen to the nurse, she doesn't have a cock anyway and she's never worn a urine bag attached to a cock. She doesn't know the pain involved when you yank hard on that little guy; and he's going to be little. All the jokes you ever heard about shrinkage will apply to you. Your poor penis has been through a lot and all it wants to do is shrivel up and be left alone!
So the second piece of tape on the tube that attaches to the urine bag is what saves you! The bag drops and doesn't tug at the end of your penis, it hangs from the tape on your leg! That's why you use the industrial strength tape! So that it will hold when the bag drops!
Wear the bag down low where it is comfortable. Comfortable is when you can take a normal step without anything pulling on you. Again! I cannot stress enough, wear the sweat pants! There's lots of room inside, they stretch, they're baggy. No one will know you have a urine bag strapped to your leg except you and your wife!
Now you get the basics about how to wear the bag, I have a few more observations that you need to know.
Second! That 8 inch tube that comes out of you was taped up high and had a bend to it. That was fine when you were lying in bed. You are now going home and you need to walk, walk, walk. It's the best thing for you.
So have a very lazy curl and make sure that the tube does not hang straight down when you tape it. I figured out the best way to attach the tube by taping the bottom tube to my leg and not taping the top tube. I then stepped toward the mirror and watched how the tube moved as I walked. I spent 15 minutes doing this and experimenting with different places to tape the top tube to the leg.
Watch in the mirror and see how it functions as you walk and you will understand what I am trying to say about how you should tape it. When you walk, you penis shouldn't move because of how the tube is taped to your leg. If your penis moves, the tube is pulling on it and that ain't good.
You will also understand that you have to cut your stride a little so that the tube doesn't pull. Once you think you have the best set-up. Throw on the sweat pants and take a walk. Don't take a long walk, because if you are wrong and you start to hurt, it's a long walk back.
If you can walk fairly normal and have very little tugging on the end of your penis, take a sharpie and draw a mark on your leg so that you know where to tape on tomorrow.
Third: blood. There will be a little as you are healing. It drips down the tube on the outside of the tube and comes out over the tube and gets hard as it dries. This continues for over a week.
About every two hours, you need to clean the dried blood at the end of your cock. Pull the head back up towards yourself and slide it up the tube so that there is clean part of the tube and be able to get every little bit of that dried blood. That dried blood can be like razor blades.
My doctor advised Neosporin ointment. Get a tube at the apothecary when you go home. Use lots of it on the tube and right on the end of your cock. Keep it lubed and clean it when any blood comes out very thoroughly.
Nightime bag. Now that your home, there ain't no buttons on the side of the bed to raise and lower you. You have to bug your wife all the time to prop you up with pillows. Remember to get pillows if you don't have extras before you go into the hospital. You'll want three or four behind your back and one or two under your knees. You will probably be uncomfortable trying to lie flat.
Get a small trash bucket and put the urine bag into it. Make sure that it is forward of your knee as you lie in bed. It will be full in the morning and no accidents will happen if it is in a bucket.
If you're like me, you want to sleep on your side. You can only lean to the side that the urine bag is on. It just won't work leaning away from the urine bag.
If you have been married for a long time, tomorrow night you will know what it's like to sleep on "her side of the bed" because tomorrow you change the bag over to the other leg. You will sleep on your other side and give the first side a break. This helps you if your back is stiff.
So swapping legs and sleeping on different sides of the bed is helpful. It's only another two weeks and you'll be all done. Months later, it's just a blip on the screen.
And now for the second big section of: "You And Your Urine Bag......The First Bowel Movement" or giving birth.
This operation and a woman's' pregnancy are so similar. You even get a scar so that; any woman that bitches about her "c" section like it was agony, you can show her your scar and tell her you completely understand what she went through. This usually changes the conversation from this woman bitching, to a sympathy session all about you. Kinda the lesser of two evils.
If the doctor didn't tell you to "Clean yourself out" he was remiss. My doctor did, however, there's still time to screw up like I did; here's what not to do.
So my wife say's, " Doctor, what can he have to eat?" and the doctor tells her that after the second day I can pretty much eat anything I want to, she is amazed.
They give you Colace, a stool softener, so you can eat anything you want, the problem is, about six days later when you have that first bowel movement, it's all hard because it's been in there for six days. Eat the jello, drink the ginger ale, forget about the meatloaf and the roast beef.
When that fateful night came, I lost four pounds. It took four hours to complete. I sweat so bad I had to shower twice! I was in agony. It had to be like child labor!
Now the doctor told me, "Don't push" so try to take a dump without pushing! You can't! But the doctor told you not to push because terrible things could happen to you; you could hurt yourself! And all the while that tube and bag are there right between your legs reminding you that you just had major surgery, so you damn well better not push!
I had to take a suppository for the first time! Mmmmm...Menthol! I want to know who had so much free frickin time on their hands that they could develop a mentholated suppository? How did they test it? How come we don't have vanilla suppositories? And why didn't they develop an applicator so you don't have to get your wife to stick her finger up your ass? You know, before the operation that might have been erotic, but it ain't high on your list of "things to do" when you're freaked out about hurting yourself, just trying to take a dump!
So this brings me to the next phase of healing. You'll freak out what I tell you next, and the doctor thought my idea to solve this was very good! So this should save you some major strain on the brain.
You will now start to have regular bowel movements and start to push just a little bit, because you have to. When you push, you'll discover that you bladder isn't empty. The problem is that you discover this because urine and blood come down on the outside of the tube and run down your leg. When you push, you overload the system and it has nowhere else to go but to squirt out of the bladder and come down the urethra [over the tube] and down your legs.
When you see the blood, you will think that you really did hurt yourself and after you clean up, you will go straight to the phone and call the doctor. He will tell you that this is normal after he asks you a few questions.
The solution to the problem:
Unstrap the urine bag. Take off all the tape. Put your penis straight out over the toilet seat lid. Hang the tube straight down and position the bag in a safe position on the floor. Lean back and try to straighten yourself out as much as possible. [this takes pressure off your bladder]. Commence with the event. Go slow and as easy as you can. If you have straightened yourself out enough to take pressure off your bladder, then very little urine will drip out over the tube and some times none will at all.
Now, aside from you not freaking out anymore, there's another benefit, it's a biggie!
When the urine comes out over the tube and runs down your leg, it doesn't all come out, it stays somewhere between your bladder and the exit hole; it burns until it eventually drips out! Stand/lean upright after you finished your bowel movement and ring out your cock! Grab it and pull down to the tip and drain out the urine that's still trapped inside. Next get the good ole' Neosporin and apply generous amounts on the tube and your tip; the burning goes away fairly quickly.
Now tape the urine bag back on as before with new tape, repeat! New tape. No bungy jumping urine bags allowed!!!
Underwear: a word, no! You want all the free room you've got and that tube doesn't want to be tugging on the end of your cock. You don't have to worry about going out in public and getting an erection and embarrassing yourself. You might have pangs that feel like an erection, but there ain't no erection with that tube up inside you.
I went to work two weeks after the operation. My wife drove me to my customers' homes and I programmed remotes and touchscreens and did some limited wiring. I was able to do about 5 hours of work and then I was done for the day. I would go home and watch some TV and then go to sleep for ten hours or more. As the weeks went by, I was able to work 6 hour days and do a couple hours on the computer at night.
I love my scotch and beer. You need to lay off. Heal faster if you can refrain from using it. I started to drink after about six weeks after the operation, but even now, four months later, I can't drink like I used to, it tires me out.
When the big day comes and you go to the doctor's office to have the tube taken out, it's really anticlimactic.
All that happens is that you talk to the doctor about how you've been and what you are feeling and he's taking a syringe and draining out the water from the balloon that holds the tube in your bladder. You will sort of feel the ballon deflate and make a little sound. The doctor pulls gently on the tube a little to test and see if it's loose and will ask you how you feel. We then talked about something for another minute or two and then he told me he would take out the tube. He slapped my leg and pulled the tube out quickly, [about a three count] then he told me to relax as I would burn for about three minutes.
It stings about 5 seconds after it comes out and the stinging goes away in about three minutes. That's it! All done!
And now comes the "Depends". Basically, it's like wearing an athletic cup, that's made out of material like a woman's pad. It has a sticky side that adheres to your underwear and that's it! No one knows you have it on but you.
I did wear them to work for about three or four weeks. I did work that would make me leak a little and I wanted to have that "safety net". Once I finished a job and moved onto the next job that didn't require me to be so physical, I stopped using the pads and never looked back. [One pad lasted me the whole day! No day did I ever need two!]
I still leak a little[four months later]. I still know that I will leak because I cleared my throat, or sneezed, or lifted or squatted the wrong way, so I run to the bathroom for that tiny little wiz, and go back to work.
Every day I get a little better. Others before me have read my story and advised me that it takes time. Time means, about six months. Then the urine issues are all but gone. See, it ain't so bad.
VOLUME III HEALING
It is now one month since surgery. It is 13 days since that wonderful tube was removed. Here's what's happening.
I have numbness on my right leg that goes from the crotch right down to the knee. It is accompanied by a pain that feels like I was struck with a baseball bat, without the black and blue mark.
I noticed this at the hospital. The doctor was sure that it would go away as it was from a nerve being disturbed when they put the retractor on your abdomen during the surgery. at this time the numbness has receded all the way up the leg to the crotch. The pain is almost gone. I can rub my leg where it did hurt and there is only slight pain.
The second thing I noticed was the front of my ball sack, right under the penis. Basically the whole front and not the sides or the scrotum; the skin was atrophied and very thick. It itches and is painful to scratch.
Once again the doctor knew about this and was sure that it would go away in time. Today, the thickness of the skin has decreased. It is still not normal, but is closer to normal than ever before, and I would say that the area is smaller. The itching is not as bad and the area of itching has receded and in turn, progressed up my abdomen along the scar all the way to the top of the scar. My pubic area is very itchy.
The third thing is size of the penis. Yes we're all concerned about that; but I would point out that besides sex, penis size does have advantages that you would never realize until you get very small.
When I say very small I mean a nub. The head and 1/2 inch with no girth at all like there used to be. That's what I had after the tube came out. Every day, the girth improves ever so slightly and the dormant length has increased to anywhere from 2 inches to 4 inches.
Why is this important besides for sex?
How about bowel movements? We all urinate when we have a bowel movement. When you have a 1/2 inch nub, you better be real careful how you sit on the seat or else you'll piss under the rim and down into your pants! It's aimed at the perfect angle. I tried to stretch it out before bowel movements, but at first, it didn't matter. How you seat yourself on the throne matters so that the urine goes into the toilet, not your pants.
This is a problem if you are at home, this is very uncomfortable and embarrassing at a restaurant, so I point out that one of the nice things is that now that I know I am healing and my penis starts to return to some kind of normal, going to the bathroom isn't as complicated as it was.
I am probably doing too much work for what my doctor told me to do. I try to lift only small stuff that weighs under 20 pounds.
NOTE: [for the British, hey! It's the system you gave us colonials and now you're using rocks instead of numbers. I have no idea how many kilograms, stones, etc. that 20 pounds is.] [FOR ANYONE SHARING GLEN'S PUZZLEMENT WHO IS INTERESTED TO KNOW, 20 LBS IS ABOUT NINE KILOGRAMS AND A BIT UNDER ONE AND A HALF STONE]
I can lift these things virtually pain free. I am careful how I lift. It seems if I am turning when I lift is when I leak. It's just a drop or two, but sometimes you get the uncomfortable feeling that urine is in the penis and waiting to come out, so I usually take a minute and go to the toilet and empty my bladder.
For this reason, I wear the Depends all day. One Depends lasts me all day and sometimes two days. I rotate underwear. I have a Depends inside each pair and wear one pair during the day and use a second pair at night so that if I were to sweat during the day, I am not continuing to wear that pair all night long and run the risk of getting a rash.
I have to get up only once at night, usually between 3 and 4 am. After a week, I was confident that after my 3 or 4 am wizz that I would sleep in the buff and give everything a chance to breathe. This seems to have made a difference in itching and the healing process for the skin seems to have speeded up since I started doing this. I have not leaked onto the bed since I started doing this a week ago.
If I did a desk job, I would only bring a spare change of underwear to work with me and a spare Depends, I would be Depends free during the day as long as a bathroom wasn't a very long walk.
NOTE: The bladder is getting stronger but I do have my weak moments. I can drink a large glass of cranberry juice and take a wizz 15 minutes later. If I am having a good day, I can wait a full hour after that glass of juice before I have to go, sometimes even longer.
So my advice is for you to take that 3rd and 4th and 5th week to get a regimen down, so that when you go back to work, you can have expectations from yourself, and not get into embarrassing moments.
SEX, YOU BETCHA!
Before the operation at age 47, I would take it anytime I could get it. In the morning after the kids went to school, at night after the kids went to sleep. I wasn't Hercules; it was one and done, but I could and did do it twice in a day many days of the week. We were like rabbits; especially knowing that it might be a long time before I would function again; if at all.
So the obsession with sex continues, as I am curious as well as hopeful that I will be back in the saddle again sometime soon.
The day after the tube came out and I wasn't so sore I had to experiment in the shower and waddaya know! Boom an orgasm! It didn't take long and it didn't last long but it was excellent! It's good for the soul because it feels good and reduces stress because you know it doesn't work like it's supposed to, but it does work.
Two days later my wife and I decided to try oral sex on each other and once again it worked. I don't get girth and I don't get hard, but the length increases and the orgasm is wonderful. It only lasts about 5 seconds but it's great. So depending on how much energy I have, oral sex is what's going on for now and it's way better than nothing.
I am encouraged by my progress and hope to keep calm and not get stressed out that I don't bounce back in a week to where I was before. I believe that as the numbness that I described and the thick skin that I described go away, that an erection will be forthcoming, I just have to be patient.
I like my Scotch. I like spicy foods. Neither one of them is a good thing for me right now and I believe is slowing down the healing process. I was watching the Celtics game at a sports bar and had three beers and buffalo shrimp and steak tips. Then I went home and had a small Scotch to end the day.
I broke out in a sweat that night while sleeping. I sweat so bad that when I woke up, it felt like I had wet the bed. The sheets were soaked. I had to shower and sleep on the couch. I was very lethargic the next two days. Before the operation, that was just another night of fun. Now I have to slow it down if I want to heal faster.
I stopped alcohol and used far less spice on my food and after two days I stopped sweating at night and have more energy so that I can work an 8 hour day.
I install home automation and home theaters. There are days that I do a lot of walking in a house to test things and program things. I used to work a twelve-hour day and go home and do another 2 or 3 hours on the computer at night. I can do 6 to 8 hours and go home and rest and then do a half hour on the computer and then it's bedtime. Getting ten hours of sleep is the norm at this time.
So there's the one-month progress report. I do the blood test on April 13 to see if all the cancer is gone.
Another bulletin at that time. But it ain't that heavy.
VOLUME IV : ERECTIONS WHAT MOST MEN WON'T TALK ABOUT BUT THEY ALL WANT TO KNOW ABOUT
My one year anniversary was two days ago. No cancer; there was never any doubt. Why? Because my surgeon never had any doubts, and I have [notice, have: present tense] confidence in him.
I have not written for a while because I wanted to give a happy ending. I am still not at the end of my journey back to perfect health, but this isn't a sad story; it's a good one filled with lots of important stuff that you need to know.
I had a PSA test in April and October and they were both at the lowest level that is reported: 0.01 ng/ml. I knew this would turn out this way, but I was always worried about sexual function and how that may ruin my life and my marriage. Most guys on this site don't seem to give out a lot of info about erections; at least not like I am going to.
Now, despite all the good things I reported about early detection and nerve sparing and age is my ally I have not had fantastic results in the erection department. I do get erections. I do have sex. I have a hilarious story about my first injection [so far my only injection] and there has been steady improvement in the quality of my erections. But, this has not been a six month rehab and all is well; this is one year and I'm not satisfied that I have healed completely as I also feel that I am still improving as recently as last week. [actually a big improvement in the quality of orgasm] so I am going to educate you and tell you all about what I have gone through and what my surgeon and I have done to make me well; as well as a few very interesting observations that my surgeon has actually started to look into and is finding validity to my claims.
So here we go: this is going to be another mini novel so I will make it into several parts.
PART ONE: ERECTION QUALITY OR: GLENS' NUMERICAL GUIDE
I grade erections on a scale of one to six. You can have an orgasm with any grade. You will masturbate unless you're an idiot, [in which case, you probably are too uptight to read this section anyhow so piss off] and you may develop Peyronie's disease. [they had to call it something, it's a very treatable issue]. Here are the numbers:
One: an absolute nub. That's what you have most of the time the Foley tube is in you. "get the tweezers" and all those kind of jokes.
Two: some length - about two or three inches, completely soft.
Three: a good four to five inches. Starting to get hard. Nothing you can use on the inside yet. A lot easier to work with for manual stimulation. [that means it's easier to masturbate with 4 or 5 iches of semi soft than a nub]
Four: starting to get hard. Hangs down at 5 o'clock. You think you can finally enter the garden and with a little help, you can. This is what textbooks and surgeons call a "stuffer". Your wife's orgasm and contractions will force you out because you just ain't hard enough. You will get both happy and bumbed out because you are finally having sex and making her feel good, but you don't have the control that you want and as a result you don't get the best orgasm that you are able to unless she has had her orgasm and you can pump, or unless you switch off to oral sex or unless you go back to a hand job. She will be able to tell when you are having your orgasm even if she isn't listening to or watching your x rated actions.
Five: hard and ready to go. Hanging out at three o'clock or maybe even two o'clock. You have definitely been harder though. You can still bend, but you don't fold up.You can concentrate and stay inside when she has her orgasm contractions.
This is in my opinion, where we tend to get overzealous and get Peyronie's disease.
We have all said these famous two words while having sex: "don't stop!" when you fall out and bang into her, when you bend too far, when she gets in the superior position and bends you too far; that's when you get that crack in the "I" beam that runs down the middle of your cock that separates the two bags that fill with blood that make your erection. On the top of the "I" beam the skin of your penis is affixed, until you bend it too far. Then you essentially get a blister in between the skin and the "I" beam that fills with calcium. This make your penis bend when erect and that spot hurts as well.
This is called Peyronie's disease. I have been diagnosed with it. My treatment consists of vitamin B complex, vitamin E and Motrin for three months. In May, I will let you know how that works for me. The disease is not so advanced that I bend when erect, but it hurts to the touch when erect.
My surgeon told me that, "a lot of you guys seem to get this and I just don't understand why". He also is mesmerized when I go to see him and has told me that almost no one wants to talk about sex and erections, so when he sees me he learns something! [I go into my office visits with notes and diagrams. This of course should not come as a surprise to any of you that have read this far]
So I encourage you to talk to your surgeon after your operation and let it all hang out there. [another play on words that just happened] you will be amazed at what he may not know and how you two can help each other.
I will tell you that my surgeon [Dr. Jack Smith] and I have a wonderful rapport. He tries to answer all my questions and really listens to me to try to understand more and more what it is like to go through this and to come up with ways to help me improve. As you read on you will see how we have gone about improving my erections.
Six: you can see your pulse with this baby. You can use it to bang nails into wood with it. It stands at attention and throbs. It's a monster! [OK you get the point]
So the scale is one to six. When you were twenty, you got a six all the time. When you were thirty, you got a six unless you drank too much. When you were forty, you got a six more often than not. Now you've had your operation and erections ain't happening. Is Viagra the answer? Are injections the answer? Let's backtrack a little bit.
PART TWO: ORGASM QUALITY BEFORE AND AFTER THE OPERATION
Why would I talk about orgasm quality before the operation?
Because I think I discovered something and I even mentioned it already; also, because it's my own personal scale of measurement for myself. The only one that knows how good that burst of semen shooting out felt was yourself. That's gone now, but the orgasm isn't. There is a pain that comes now in different areas of your body and it was never there before; or was it?
Assuming that you've had the prostate biopsy; here's the story. After the biopsy you had the blood in the urine and you had the blood in the semen. Try to remember that clot of blood that flowed through when you first started to urinate? It didn't hurt, it just felt weird and then it was gone and the color went from red to orange to yellow and your turn was done. Remember that first orgasm after the biopsy? Mine was harsh! The feeling on the end of my cock was great as usual, but the pain up inside right after the orgasm was bad and it lasted up to three minutes.
I equate that pain as being the same pain up inside your ass just the same as when I had a sygmoidoscopy. When they get all the way up inside and tell you that they are going to turn the tool over and look at the other side of your colon and they pump the air in; that kind of pain; except it lasts for three minutes!
After the operation, I have had that same pain after orgasm. It was at first all the way up inside as described above. Dr. Smith's answer that: the ends of the tubes from the testicles go to where the prostate used to be but they are tied off so they must throb as there is nowhere for the sperm to go and that this will work itself out over time. OK, that one worked until the pain moved from that area, down to my crotch. The area right where the doctor always puts two fingers and says, "cough" when you get checked for a hernia.
So, after six months or so, I'm getting a four to a four point five for erection quality. I didn't like taking Viagra or Levitra because it made my eyes sensitive and didn't seem to do too much to help after I tried it twice. by that I mean: I tried Viagra twice, the first time I got a five for an erection and the second time I got a four point five. Same thing with Levitra so I stopped using it. I go back to Dr. Smith and tell him this stuff and he says, "you should be functioning better than that by now, let's jump start this baby".
And that leads me to the story of:
MY FIRST INJECTION: OR, THE SEXUAL ADVENTURES MADE POSSIBLE BY THE SWEDISH WONDER DRUG.
The idea behind this was to "jump start" my erection so well that it would work perfectly for ever after. Or else we would find out that I had a problem and go from there.
The injection really doesn't hurt that much and if I had to have an injection so that I could have sex, I would have less sex with my wife, but I would still have sex on some kind of regular basis, because the pain from the injection was far overshadowed by the great erection and sex that I had because of it.
The doctor has to show you how to inject yourself, unless you're a nurse or a diabetic and know how to give injections. So the game plan that day was to give me the injection and a sample to take home and report back the results.
So, the doctor makes me hold my penis with the left hand [as I am a righty] and he shows me not to hit the vein; and that the meat part is where I am supposed to stick the needle. He shows me that the syringe has a blue knob on it and you turn the knob to the desired amount needed for erection. It has little indents at 5, 10, 15 and 20 mils. And that only allows the plunger to go so far in and you don't overdose.
We count; one, two, three and he stabs me. The anticipation is worse than the stab.
"Now that's not so bad is it Glen?" asks Dr. Smith.
"Well it's not at the top of my "things to do list for today", but it's not that bad", I reply.
"Now all you do is just push in this plunger here.....Why doesn't this thing want to work? Oh, I see; you need to turn this knob here and...........no, that's not working. I'm really sorry about this Glen, this hasn't happened to me before"
"Well it's starting to get uncomfortable, can you inject me now?"
"It still seems to be stuck. I'm really sorry about this Glen. Let me just try moving this knob again....... No that doesn't work either!"
"Doc, I'm starting to get irritated, we're getting past the "discomfort" stage. Is this thing broken or what?"
"Well I'm going to have to take it out and see why it doesn't work, I'm sorry!"
[I'm not writing this to bust my doctor's balls. He was devastated. Before he injected me, I busted his balls. He told me that the injection hurt "just a little". I asked him, "How do you know, have you had this injection before?" He looked down at the floor and said, "No, but I took Viagra once." My doctor really was upset about this]
Dr. Smith walks over to a light in the room as I'm standing there holding my cock with my pants down at my ankles and he exclaims, "Aha, you little bastard, now I see where the blue knob goes! OK Glen this will work now!"
He says to me, "Whoa Nellie!" as I waddled over to the light. "I'm not going through this again,. What did you do? I'm not getting stuck like this again and be holding the syringe in my hand! How did you fix that?"
He showed me about the now infamous blue knob, and how it does and doesn't work depending on how it's turned. He squeezes out some fluid to prove himself.
"OK now we can do this" exclaims the doc.
"You're killin' me" I told him. "Do we have to go through all this again?" [I knew full well the answer to this because I wanted that erection more than ever]
He repeated everything and the injection went just fine. He wanted me to leave right away and go home. [the injection was set to 15 mils. I probably got less than that when he squeezed out some to prove that the syringe worked]
I didn't make it out to the car. You know how you can get an erection and it gets caught in your pants and you have to adjust so it can stand up or it gets uncomfortable? That's how I felt walking [sort of] through the lobby of the hospital on the way out to the car.
It was about 45 minutes from the time I got the injection, to the time that I got home. The kids were at school so my wife and I immediately went to the bedroom. I could count my pulse! This was a 6 plus! The biggest and longest erection since before my biopsy. What a great feeling to know that it could still work so well!
Now the rest is brief, but factual.
I went 50 minutes and sweat was pouring down me like I was going to have a heart attack. It took almost no energy to perform at all! I did not have to concentrate to keep an erection; all I had to do was keep pumping and pleasuring my wife and myself. When she had her orgasms, [Yes!!!! Plural, I felt like Hercules and Hugh Heffner all in one] her contractions did not push me out or bend me back; I just kept right on going!!!! Honestly, for her sake, I had my orgasm at the 55 minute mark and then took a shower.
Fifteen minutes after the shower, I was completely throbbing. We had to have more sex!! But after about ten minutes, I couldn't take the pain anymore. The pain was from having a monster erection for so long, so I literally put ice on it and waited for it to go down.
After four hours time, it was not going down at all and the throbbing was awful! The doctor gave me a prescription for "the antidote" in case the erection wouldn't go down. So I called the office to see if that is what I should do.
"You have reached Dr. Smith's office. We are at lunch from 12:30 till one pm."
It was ten minutes till one, so I call back at 1:05.
"Oh, hello Mr. Leslie; what's up?" [no bullshit, that's exactly what she said!!]
Turned out Dr. Smith was giving a lecture at a nearby college and I talked to another doctor that was in the department. He told me to definitely take the antidote and that if after two more hours the erection did not go down, I would have to come in so they could flush me out because I probably had blood clots!
Hold that thought about blood clots because it's very important!
If blood clots cause you to keep an erection, why don't they cause you to not get a quality erection? Why do they not cause you to have pain at orgasm? Would this be the same pain that you experience at orgasm right after you have your biopsy? Are they the same thing? Is this why I could get a six for an erection with an injection but couldn't get that same quality erection without the injection? Is it because blood clots were inhibiting the blood sacks from filling up properly to give me a throbbing monster?
PART THREE: MORE THOUGHTS ABOUT BLOOD CLOTS AND WHAT ARE WE GOING TO DO TO FIND OUT IF THEY ARE THERE OR NOT?
FACT OR FICTION? IS MY PENIS SMALLER AFTER THE OPERATION?
I take all these questions and this info back to Dr. Smith and lay it on him. Turns out once again that I think too much and talk even more about my erection issues than almost any other patient that he's had. He can't say that I'm wrong, but he's not ready to write a paper for the Journal of Medicine either. But he says our next step is to have me start taking aspirin every other day to see if there is any validity to the blood clots as this should help thin my blood and the clots and erections should improve.
What happened was that I swear that I felt the blood clots move during sex. It was that same feeling that you have when you piss out blood after your biopsy. My further assertion that I am right is because now the pain at orgasm is at the end of the penis, not at the crotch where it has been for a few months. [By the way, all that numbness that I talked about after the operation in the entire crotch area is all gone now]
A few more months of this goes by with me taking the aspirin every other day and I have also taken Levitra and the results are a little better, but not much. Three out of four times after taking the Levitra I got a five for an erection. Once I only got a four point five
I am also working 60 to 70 hours a week. In my business, everyone wants that new home theater in time for Thanksgiving, then Christmas, then New Years, then the ultimate is for the Superbowl, so I am right out straight from October till February every year. Working all of those hours, there are times that the mind wants things that the body just can't do.
Without the Levitra I have been getting at least four point five and sometime five for erections. So I try not to use the drugs if the body will work without it, figuring one day I will be old enough that I will need the drug anyway, so don't overuse it now.
I go back to Dr. Smith and give him the results and my opinion and talk to him about another issue: penis length.
He had mentioned in the past, "All you guys claim you're an inch shorter than before! I pull the bladder down and connect the urethra back to it and you should all be the same as you were before the operation!"
My navel area will never feel the same again as before the operation. It has stretched from the surgery, where in the beginning, everything felt tight; but now there are some things that I can feel that don't stretch as far as they used to. You can just tell. It's not like it hurts anymore; it just feels different.
So I asked Dr. Smith: "What makes you think that just because you pulled down my bladder and connected everything back together that the bladder hasn't gone back to where it was for the first 47 years of my life? And isn't the section where the prostate used to be about an inch or so in length? If my bladder went back to where it was in the first place, wouldn't my penis be shorter?"
Once again, Dr. Smith was amused that I would blurt this out, and is not ready to write a paper for the Journal of Medicine, but he has followed up and called patients to ask them about this and he told me that they all agree with me. He says he is thinking about taking pictures of the bladders of patients that had the operation over two years ago to see where their bladders are now, compared to where they should be after the operation.
This may lend some credibility to my assertion that we are all a little shorter now than before the operation. I am now working on the idea of where to steal something from your body so that the urethra can be resected to that extra piece and then attached to the bladder so that the penis will maintain its normal length. This may also help erections and every single person that comes after me in the surgical line will be more "normal" after the operation.
Back to the blood clots:
Dr. Smith agreed that I may be onto something so we scheduled an appointment for me to go back and he would "rinse out" the inside of the penis with a saline solution along with some medicine that would be helpful.
When the day came I was apprehensive because I'm not into pain and I didn't want to get too hopeful that I had diagnosed myself and would be perfect again, just in case it didn't work or in case he didn't find any blood clots. Once again I got stabbed with a needle. I did not watch, but concentrated on keeping as still as possible so he could finish as fast as he could.
The first blood clot he showed me wasn't this big blob, but it was a clot. He got a few more small clots on the second rinse. On the third and final rinse, he went over to the sink to eject the blood from the syringe and he blew the top of the syringe off from the blood clot that was stuck in there.
You're saying to yourself, "This is good, he's onto something, and we'll all be cured!" Well, I am better but not perfect. Here's where I am at now.
The pain at the end of the orgasm has definitely decreased. It is still at the end of the penis where it hurts, but it doesn't hurt as much.
Erections are still four point five to five without drugs, but I did get a five point five with the Levitra and more control. More control meaning, more dick control, the ability to breathe and maintain erection and extend the length of the orgasm. Orgasm now increased from between 5 seconds to 10 seconds all the way up to a good pleasant 15 to 25 seconds of absolute pleasure!
The increased erection quality means little or no urine leakage in trying to maintain erection. You can concentrate on pleasuring her more instead of being mechanical and concentrating on your breathing and not leaking. With a lower quality erection, breathing and the slight push to maintain blood flow and erection are very tricky because if you don't breathe and inflate the penis just right; you leak urine. Even if the last thing that you do before jumping into bed is to take a wiz, after five minutes, there's more urine in your bladder and you have to be careful how you push to keep the blood flow to keep it up.
So all this means for me better erections, less or no urine leakage, better sex.
I left out a lot of stuff. There's still more to come. [another play on words; too much Monty Python]
I will probably send only more info about erections until I am completely well, after that, it will just be simple updates about anniversaries of no cancer etc.
Hopefully, I am helping others.
VOLUME V: LIFE GOES ON
This will be brief.
I get e-mails and even phone calls from time to time from guys that are trying to make up their mind and just want to hear from someone who has been there.
It is gratifying to know that I can help in any small way.I do not try to convince you to do anything, I just answer questions so that you may make a better informed decision.
You have options that I did not have. You have more medicines and data than what I had at the time; to make a decision on. There is a better awareness because lots of famous guys have made public their medical history and lots of famous guys have died; like my idol..........Frank Zappa.
So to resume my story........
I still think that I have blood clots as I feel things move inside at the base of the penis during intercourse. They don't hurt like they used to. That means that I can get an erection and they are all 5's to 6's. Captain Hook is not at a 90 degree angle anymore, just a 45 degree angle, and that only really shows when the erection is very hard, otherwise when at a 4 or 5 position I am straight.
I am an inch shorter than I used to be and that is fact. I get no complaints from my partner, just a lot of good sexual activity because we have a good relationship and because I have the will to win; which means that I will be damned if this operation will stop my life from being what it was before I had this operation...........and that is so.
There is no semen or liquid anymore and that's weird, but we are now used to it. The strength of erection is back to what it was and so are the quality of the orgasms.
It takes longer than six months to rebound...at least for me it did. I am now 50 and wonder if what I go through is because I am 50 or because it is as a result of the operation.
Keep trying to improve after surgery. There are plateaus; don't get discouraged. There will be a few episodes of: one step forward, two steps back. I went through a lot of those, I didn't give up.
Are things the way they are as a result of the operation; or am I aging?
By that I mean: if I am tired from a long day of work and I drink two or three drinks, I still have no problem getting a very quality erection, I just find it difficult to come. Sometimes you just have to stop and relax and take turns and then you have the strength to have orgasm.
If I drink three or four drinks quickly and then want to have an orgasm, that may not happen. See you in the morning, honey.
Otherwise, everything is as it used to be; so I have to use some restraint when it comes to drinking and I can't expect a lot after a 14 hour work day.
I would say that the sensitivity issue must be as a result of Peyronie's disease and that it can be crippling, and exacerbated by fatigue and alcohol.
The benefit is that when well rested, you get to be like Hercules as you can go longer before orgasm and therefore please your partner better [that means you can go an extra two minutes before orgasm] I had to say that because you thought that didn't you?
Life is what you make of it. "Oh! Poor me" gets you nowhere. Rather, how do I work around this and make the best of things........should be the motto.
I am not the person I was before the operation! Should I be? No!!!!!!! Part of me is gone! But my surgeon did his best and I am still able to function for sex. I talk about sex because most guys won't and all guys want to know, because that's the biggest thing that men are afraid about after the operation.
I have got used to making sure that all the urine is discharged before I pull the underwear back up. I make sure that I focus before I cough and squeeze. Same thing with passing gas. You just get used to it and stop thinking about it and just deal with life every day as it happens.
If I wasn't so into sex and had a great partner then would I miss not gushing semen? If I didn't have a scar from the belly button to the crotch would I even remember that I had this operation? Believe it or not, my answer is: " I think not". I almost don't even see the scar anymore, and neither does my wife. We compare my scar to her C-section scar, they're almost the same. Just another merit badge of life.
So I'm here for your emails of questions and concerns. I realize that everyone is not where I was, some of you have larger numbers and bigger concerns and I appreciate that. Most of you have numbers like mine because awareness is much better than it was and diagnosis is more accurate than it was. Some of you guys won't even have to go through the ice pick routine as they are developing a blood test that will be even more accurate than the way those of us that have come before you have been through.
Maybe someday this website will be just a footnote in history. We should all be thankful that a guy like Terry has taken the time to maintain this for those that are newcomers. This site did help me and I wanted to add to it so that those that come after me will get another version of life after beating cancer.
Until then, I am here to help anyone in any small way. I am still at .001 for PSA and intend to stay that way.
PSA is zero. I do not take injections or use any Viagra or any other erectile malfunction drugs of any kind. I have no trouble getting a "5" any time I want, except when I am very tired or have been consuming large quantities of alcohol. [ for any guy in his 40's or 50's isn't this normal?] Orgasms are still improving even at this late date. Basically I think I have relearned how to control my orgasms.
My only problems are: weight gain and curvature of the penis. [which seems to have lessened]
I get e-mails from men and women all the time and have no problem answering any questions. If I can help someone better understand what lies ahead so that they might make a better educated decision about what to do, then my mission is complete.
Other than dry orgasms and a scar, life is back to normal. We all heal at different rates. Some guys have e-mailed me that they healed a lot faster than myself.
If you have a good surgeon and understand that it may take a few years to get back to your old self, then you can go into this with piece of mind and understand that there are plateaus that sometimes seem to last forever, but perseverance will win out in the end.
Talk to your doctor just as I have written for you, you will be surprised about how much help you can be to yourself by telling your doctor what's really going on so he can better understand how to help you.
Well this time out, I don't have very much to tell you about myself, but rather about those that contact me.
First about me. I haven't had a PSA in about a year, the last time I had one, it was 0. No problems with ED - I don't use Viagra, or anything else; I don't need it. Incontinence is the same. You need to learn to squeeze when you cough or lift things. It's been an improvement when I go out in the cold from warm rooms, knowing that the urge to take a wiz, will pass in a few moments. Once in a while, the urge doesn't pass and I've been right in going back into the house for a quick wiz before taking a drive or shovelling snow, etc. That's basically all there is to know about that.
As for you guys sending me emails.......sometimes I get a few in a week, sometimes I don't get any for a month, but generally, the emails are all the same. [questions or clarification of what is posted by me] I always answer and what I hear is that the robotic helps guys heal a lot faster. My asshole brother-in law, [who didn't even tell me had had prostate cancer and had the operation without telling me also] will probably squirm and not want to be uncomfortable "talking about it" the next time I see him. So whatever information I could get from him about robotic will be very little at best.
I understand that there can be higher chances of incontinence and erectile dysfunction when doing robotic. That info seemed to go along with experience of the surgeon, so ask if he's done a lot of these as you would for the radical op. I would think that robotic would be a lot easier for healing time since there's no big scar. [Glen is right about healing times. As far as side effects, surgeons with similar experience seem to produce similar results - open surgery vs. robotic laparoscopic. So make sure your surgeon has plenty of experience and good results]
Of note: I have a customer that is an obgyn doctor and he operates the robotic way and has done hundreds of operations. He claimed to me that doing operations the "old fashioned way" was barbaric and he would never do those operations that way ever again. So ask some of the other guys here at the forum that have had robotic what they experienced and see if that will help you in your decision making..........and as always, if you want any input from me,
I'll be right here.
[In response to a reminder, Glen said:]
I have been stupid busy for a month (the vernacular for that is overworked) and thinking about what to write and it just slips by me. I'll get it done - I just got 2 emails last week...
To update: now working the usual 70 hour work week as before surgery. Everything is pretty much as it was before surgery except for sexual function. I had lots of pain just after orgasm and this went on for many years.
Finally I went to a specialist that likes to talk about sexual function and seems to understand the issues very well. He told me that there is a muscall wall that is going into a spasm. [This can last for over 5 minutes], after that it is sore. This is kind of like having a leg cramp and how you would feel afterward.
The answer to the condition is a little blue pill called Tamsulosin [0.4 mg size]
This pill relaxes this muscle wall without any adverse effect on the rest of teh qeuipment and sex is now very enjoyable even twice a day! There are now waves of pain that come right after the orgasm anymore, so extended use isn't making me take a few days off because of pain.
I am not taking any E.D. medicine at all. Everything works fine. Quality of life is very good. The issues that I covered before about uringating and being careful as well as cold days and the urge to urinate or coughing when picking something up....... I don't even think about these things anymore, it all comes natural to pay attentino to what I am doing since my body works a little differently now than before the surgery.
My wife had a laparoscopic partial hysterectomy. She went home the same day and was gardening and going to baseball games the very first week after surgery. I mention this as you may want to investigate thoroughly having laparoscopic surgery instead of what I had. Many doctors now do it and have a lot of experience doing it.
Your benefit would be a faster recovery period with less pain and having way less intrusion of yoru body with regard to moving all the organs out of teh way to get to the prostate to remove it. No giant scar [although it makes for a nice conversation starter and any bitchy woman who complains about, "men having no idea what women go through"..... well it quiets them for a few minutes anyway]
So if you go the laparoscopic route: ask a lot of questions about the procedure. The doctor shoudl be able to show you many pictures of teh actual operation from "under the hood". My wife has pictures of everything from the grapefruit sized fibrous tumour to the waste in a pan afterward. It showed what her scar from her "C-section" from under the skin looked like and plenty of other stuff.
Your doctor should want to show you this as a way of explaining what he will do for you and how he does it. You'll know then if you have confidence in that doctor or not.
If you are still undecided about what to do, read from the guy that builds this website. He has been "watchfull" for years and is up to date on many medicines and if they really work or not. Get different views of what you should do from others that are doing something different from me; you have a lot more choices than what I had when I decided to do the surgery.
Ralize that hindsight is 20/20 and I have no regrest of what I did. I am comfortable with my decision and my life as it is. You have more knowledge of this disease now and options taht you can read; from all the other men here and get their take on why they did what they did, for better or worse.
Relax and read! This is a tremendous knowledge base here written by people that went through this, not a book by a doctor that thinks he knows what we feel and go thorugh. Many men here will answer questions....ask them!! You have the slowest growing cancer that there is. Don't be foolish and "maybe it will go away", research this website and get answers that will help you decide what to do!
Until later, I'll be watching my son play baseball, my daughter doing the news on television and enjoyig life with my wife at home, sipping scotch and cooking on the barbeque.
7/2/13 Don't have much to report. I don't use or need any medicine for E.D.
Having sex on a regular basis just as before surgery. Now 56......so for those of you that stopped having sex because of embarrassment of ED. Shame! Talking to doctors helps everyone. Some doctors really have no clue what we did go through or are going through because a lot of guys are too embarrassed to say anything; and so they can suffer for it.
If your doctor doesn't have answers for you, that doesn't mean that he is a bad doctor, it means he doesn't have the experience to help you; but if he is a good doctor, he will find someone that can.
Your body is your problem. If you don't get answers to questions, it doesn't mean that there aren't any answers to your problem, it means you haven't asked the right person. (sometimes we don't like the answers we get, but at least we then know where we are at and don't have to guess and get all stressed out)
Medicines and procedures and tests have changed a lot since my operation and you who come after me have a lot better choices than what I had. You have more skilled surgeons to choose from and different procedures to pick from than what I had.
My experience with the specialist that I mentioned before was a good one as this guy had lot's of answers and a medicine that makes things all normal for me again (regarding pain at the end of orgasm). You need to be diligent and ask questions and have all your questions written down so that as your conversation drifts from asking the first few questions, that you don't lose track of what you wanted to know or tell the doctor; it's easy to get sidetracked and leave something out.
So I'm 10 years older than when I was diagnosed and operated on now and everything here is the best that it could be.
I get emails quite often from people just to say "thank you for the story" as it helps them deal with this disease, and for that I get a good feeling about myself; that I can in some small way help some other person understand firsthand, what happens and how I dealt with it.
Some of us have a happy ending, but it takes a lot of work.
Until later......................I'll be right here; feel free to email with questions.
Glen's e-mail address is: remoteles AT hotmail.com (replace "AT" with "@")
NOTE: Glen has not updated his story for more than 15 months, so you may not receive any response from him.