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PART 3

RADICAL PROSTECTOMY SURVIVAL HANDBOOK

Part 1     Part 2

by Ron Voss & Janet Olson
Second Edition - 2000

Some Different RP Experiences

Wayne K. Tesmer wrote:

Sunday (9/7)

I began preparations for my Monday morning surgery with a diet restricted to liquids, and an afternoon consumption of one pint of liquid laxative. Wasn't too difficult, but it did make me realize that the moment I was dreading for much of the summer was about to arrive. About midnight we were hit with a pretty good hail storm (which filled my freshly cleaned yard with leaves and branches - and made the coming day seem even more ominous).

Monday (9/8):

Up at five a.m., showered, drove my wife and I to the hospital (about a mile and a half away). The little lady at the registration desk asked me if I wanted a private room - it would only add ten dollars a day to my bill. Couldn't believe it! Snapped it right up! At about 8 a.m. they put me on a cart and wheeled me to a room with another six to seven patients preparing for surgery. Asked me a few questions, gave me a sedative, then put a mask on my face. That was the last thing I remembered until I woke up in recovery about 3 hours later - and hurting quite a bit. I was in my room soon after, attached to the IV and the urine bag, of course the push button with the pain reliever we've read so much about was also attached (they used a drug called Fentanyl).

My recollection of the rest of the day is a bit foggy, but they did get me out of bed and down the hallway with my arm around the shoulders of a nurse's aid later in the day. The urologist stopped by and assured me that the surgery went well, lymph nodes removed, no surprises, but said pathology report would not be available for couple days. Although the "numbers" were all in my favor, the doctor's voice was not reassuring enough to suit me, and I'm a natural pessimist. I slept very little during the night. There was a clock on the wall in front of me - it seemed like the hands scarcely moved!

Tuesday (9/9)

Was a bit better, but not much. More walking and a clear liquid diet. The doctor showed up unexpectedly late in the afternoon - he was going out of town the next day and had gotten the test results in early. He announced that the "outcome couldn't be any better!" Lymph glands were clear and all indications were that the cancer had been confined to the prostate! Suddenly, the room seemed a little brighter and the pain a little less severe … He seemed to think I could go home on Thursday - I wasn't so sure. He prescribed a sleeping pill - which really helped.

Wednesday (9/10):

Things were much better. Appetite was coming back, and they brought me regular food. Could feel the stomach gases beginning to move. More walking - reading in my chair. Disconnected from the IV - attached the leg bag.

Thursday morning (9/11 ):

I was ready to go home. The doctor stopped by. I asked what kind of restrictions would apply. He said simply that "if it hurts, then quit.". He did stress, however, that I should not drive a car for four weeks. My wife picked me up about noon. I took a shower later in the evening with the leg bag on - I've since learned that it is much better to be attached to the larger bag when doing this.

Friday (9/12):

It was rainy, so I just laid around and got caught up on reading (E-mail).

Saturday (9/13):

(It) was a beautiful day, and I was amazed at how well I felt. I got my leaf blower out and corralled all of the backyard leaves knocked down by the hail storm and took a leisurely walk around the block. Laid down for a bit in afternoon, but did not experience any sense of weakness or fatigue. Had my first bowel movement in the morning - five days exactly from the time of my surgery. I had begun taking Metamucil couple times a day after getting home.

Sunday (9/14):

Woke up at about five A.M. and couldn't get back to sleep. Got up, made coffee. Pain is much diminished -finished up my final percocet. I'm sure I can manage with Tylenol, etc from now on. My wife and I went out for breakfast at a nearby restaurant. Came home and rounded up leaves in front yard with blower. (I did, however, accept Marian's offer to mow the front lawn.)

Monday (9/15):

Up at 5:50 a.m. to make coffee for Marian and myself. (She goes to work at 8 a.m.). Later, walked couple blocks to grocery store - realized I had forgotten cash. Back home to build up energy for return trip this afternoon. Looked at back yard - needed mowing. Should I do it? Quick pull on cord and Lawn Boy started - mowed lawn - no sweat! Still move slowly when sitting down or getting up chair, but not bad.

Tuesday (9/16):

(Went) to doctor's office to have my (30) steel clamps (sutures) removed. Stung just a bit. Discovered some leakage around catheter - doctor said it could be expected. Upset by this as I was now expecting a perfect textbook recovery, (It did quit the next day, but comes back intermittently - a nuisance).

It is now Friday afternoon as I write this, and will close with a few observations:

1. The whole experience was less rigorous, painful, uncomfortable, and complicated than I was expecting. Which is much better, of course, than the converse. Experiences of other people were helpful to me, but suggest that you not base fears (or hopes) on them.

2. The private room was great!

3. The prospect of the catheter and the bags troubled me as much as anything else, but I adapted to them surprisingly well. Most of time, (I was) scarcely aware that they were there. When the nurse attached the portable bag to my leg, she followed instructions on the bag and attached it to my calf (rather than thigh), then cut straps which prevented me from moving it up later. Have decided it works just as well on calf. For example, it can be emptied by simply lifting your pants leg, rather than dropping your drawers.

4. Suggestion to bring along a Walkman to the hospital was excellent. Local public radio station carries 24 hours of classical music - helped much during first couple of nights when I couldn't sleep too well.


And, From Sidney Finkel:

Reflections at seven weeks after surgery. Was It worth it?

How am' doing after seven weeks post op? A lot better than I was four weeks ago or even just yesterday. Everyday brings an improvement in my general health. My bladder control is now at 90%. My strength is almost back to normal. I am able to ride my bicycle twenty miles in a heavy wind. My depression has been lifted since going on anti depressants. However, my sexual performances as far as getting an erection is zero. I do have some hope of regaining an erection in the future. If not, the honest and open postings in The Circle by people that want to share their knowledge of all the mechanical ways of achieving an erection, has encouraged me to at least experiment in that direction.

I now realize that my biggest fight is not the physical body, it is my emotional reactions to the surgery and the probability that I will be impotent for the rest of my life. Before the RP I tended to ignore the possibility of not being able to get an erection.

After all how important is my ability of not getting an erection, compared with what was then in the balance, life. Also I will be sixty-six soon, and I have had my share of exciting sex. And are there not more important issues in my life? That was my, and my wife's thinking, at the time. Such reasoning was the rational mind at work. However, emotional feelings are much different.

What I now feel is that I have suffered a great loss. It is not so much about sex. It is the feeling that I am not complete, and that in some ways I am defective. I think that my unconscious mind wants to go back to the way I was before surgery. Like with most things in life the gates are shut, there is no going back. All we can be fairly sure of is that we have today. I have to learn to grieve my losses so I can go on with life, and live one day at a time. Only then will I be able to accept the different me, and be grateful for life. I also feel that because I am "one of the lucky ones" I need to share my good luck with humanity. I have the urge to give more of myself, and to hopefully make a positive difference in other people's lives. I am fortunate that I have the opportunity to do these things.

In answering my own question, was it worth it? YES! Choosing life under any circumstances is the right choice. A quote "LIFE IS DIFFICULT BUT WHEN WE ACCEPT THAT, LIFE IS NO LONGER SO DIFFICULT."

LA CHAIM! "TO LIFE!"


This was from a friend who preferred not to be identified:

So glad to hear that you have recognized "blessings" along the way! In regards to the RP: my husband did a lot of talking to doctors about anesthetics and found from an anesthesiologist friend that the type makes a big difference in pain control and recovery. With a general and no spinal, the pain suppression is handled with a self- administered morphine pump, or the like. With the spinal (less of the general is needed) the pain during the first 24 hrs. can be abated through that avenue, and this leads to quicker functioning of all of the internal organs - especially the g.i. system. This allows quicker discharge from the hospital - earlier eating and eliminating. In my husband's case it also meant that he was placed in intensive care during the first 24 hours for monitoring of (his) breathing. This meant that we didn't have to hire the private duty nurse that everyone had recommended. This may not be true in a bigger hospital. We chose to go to a smaller, local hospital that is associated with one in NYC. His urologist practices in both places, but didn't feel that there was any reason to prefer the more distant, larger, less homey place. The care he got in the hospital was excellent. There were many tears, though, during the first day or so. Mostly of relief.

The second bit of "advice" has to do with expecting roller coaster emotions during the first couple of months after RP. Joe had a lot of pent up emotions - especially anger and frustration that he sometimes took out on me and the dog! So, I would suggest establishing (or keeping up) a relationship with a counselor. His mental and emotional functioning were just not up to par. We had thought that because of his young age, good condition, etc. that he would bounce back more quickly than he did. He was also most afraid of losing continence going into surgery, and that is exactly what he got!

Here we are, almost six months later, having gone through biofeedback, physical therapy, etc. and he is finally regaining a degree of continence. We think that he is having a more difficult time with this because he had such a large prostate (with BPH [Benign Prostatic Hyperplasia] for many years).

This leads me to our third bit of advice. We have become experts in dealing with incontinence. The best product we have found is difficult to locate, but can be ordered directly from the company . It is called Rejoice! It consists of regular looking briefs that have a water proof lining/pocket in which a highly absorbent, thin pad is placed. Very comfortable, unobvious, and they don't crackle like plastic. The company name is Caring Products International and the (phone) no. is 1-800-888-5651. At night he wears the Depends that have Velcro elastic straps.

If you go back through the Circle posting for the last few months you will find lots of advice about regaining erectile function - especially from Wendy. Using the vacuum pump as a way of keeping the tissues elastic and provided with oxygen seems to be the "preferred" method of many. Caverject can't be used often enough, and many have had trouble with getting MUSE to work (including my husband). Don't expect erectile function too soon. According to the research I've read, six months is about as early as it can reasonably be expected, and it should improve over the next year or so. Fortunately for us, this seems to be an area where Joe is "normal." One last thing, expect lots of attention around the time of the surgery, but after about six weeks expect the support to drop off. People who are not involved just don't understand what a long recovery/healing period this procedure and disease takes.


Post RP Sex

(Editors note: Most Prostate Cancer treatments have a tendency to leave some patients with a degree of Erectile Dysfunction. At the time of this writing, there are four basic treatments used to treat Erectile Dysfunction. They are: vacuum pump, urethral suppository or cream (MUSE), penile injection (Caverject or Tri-mix), and the newest one, an oral drug (Sildenafil or Viagra by Pfizer). No single treatment is right for everyone. Of course, there is a more permanent treatment which involves the surgical implantation of a small bladder that can be inflated. These are some of the experiences/)

Warning to Partners about MUSE:

MUSE (the suppository used for erection) must be used carefully. Some of the chemical is released in the ejaculate (if there is any), and can result in burning and swelling to sensitive tissues (including the mouth).

Impotence Tx
Submitted by John S.:

I have read quite a bit lately on the PPML about the discomfort of using the needles for injections. I suppose there is something inherently wrong with sticking a needle in this most sensitive part of our bodies.

After my RP I tried the Muse a couple of times … almost passed out once. I knew this wasn't going to be an option for me. Then the doc talked to me about using Tri-mix injections. It worked very, very nicely. I had to adjust the dosage so as not to have a three hour erection (there was a time in my life I would have paid anything for this problem).

My only problem was getting used to actually sticking myself with the needle. In fact, it did not hurt at all, it was just the psychological aspect of sticking myself. The doc's male nurse then asked my to try a device called the Osbon Injection Gun. The cost was small ($75) and it TOTALLY solved the problem. This gun is slightly larger than a cigar tube. You draw the proper dosage in the syringe and place the syringe in the spring loaded injection gun - find your target - push the button and you have it. You do not see the needle once it is placed in the gun. There is no pain - nothing - except for a great erection in about 5 minutes.

I have gotten so comfortable with this that I now also use the injection gun for periodic B12 injections (not in Mr. Happy).

Check it out guys! It is terrific.


And again, from Robert T. Hitchcox:

Short Story (Pardon Pun) on my little guy:

I tried both the pump and MUSE with little satisfaction and now use a formula referred to as Tri-mix.

Needles: The 29 gauge needle does not hurt when penetrating the penis (love alliterations). I'm serious. But my medicine comes in a wee bottle requiring that the needle being inserted and drawing off the proper volume. I am so damned nervous, at this point, that Nancy has to draw it off. Psychologically, I am a basket case. In my book I mention not only a dread of needles, but even tongue depressors.

Nocturnal Erections: A first event was about three-months after my Jan, '97 RRP. Then, a month later another one. Just had one last week. But, alas, the first one withered at Nancy's touch. The second one withered at my touch. Tears streaked my cheeks. The third one actually held firm for a short adventure.

Immoral Point: Have faith! Use what you have to use until you can use what you want to use!


From the Editor:

A Shot in the Dark

My experience with Caverject started with my second visit to Dr. Tom Lue. He had Janet and I watch a video tape on the use of injectables. Then after complete explanation about how the drug works he gave me a shot… while I held the syringe with his hand on top of mine, of about 0.3cc's of Caverject. He told me to immediately hold pressure on the spot of the injection and massage it for about 5 minutes to prevent bleeding and to spread the drug through the Corpus Cavernosa where it does its magic. I was then to try direct stimulation and also stand up as that increased the blood flow to the area. About fifteen minutes later he came back into the room to find I had only a slightly erect member. He explained that sometimes during surgery some of the blood vessels are damaged thus preventing an adequate erection. I got the impression that he thought I wouldn't have much success. He wrote a prescription for the drug and another for much smaller Insulin Syringes.

We immediately went to the drug store to purchase my implements of pain and pleasure. When we returned home I took a syringe, filled it with water and experimented with injecting it over and over again into and orange held between my legs. This gave me a good sense that this was something I could do.

When I finally got the courage to try it, I started with 0.6cc, it went really well and with no pain, once I got the shaking in my hands from extreme nervousness under control. I also discovered that I did not have to stand up for it to work. And the results? It was absolutely wonderful - for the first hour and a half, then the discomfort set in. Guys always talk about how great it would be to have an extended hard-on for hours of sex. But, let me tell you, it's not all it's cracked up to be. As a matter of fact, it eventually gets downright painful.

I found two things that improved the situation. The first was to adjust the dose a tenth of a cc down at a time uuntilfound the lowest possible dosage that worked, usually 0.3 to 0.4cc's. The second was that if I began to become uncomfortable I would either sit in a very warm bath or heat washcloths with very warm water and then wrap them around my penis for about ten to fifteen minutes or until my penis began to point downward slightly.

I am glad that I don't have to do that anymore, what I do now is a lot more spontaneous and natural, but I do miss the great erections it gave me.


This is from an E-mail exchange between Gary P. and Wendy Dyer:

Wendy writes:
Gary, how do you incorporate the use of the pump into the sex act? How can the sexual act be spontaneous when a pump must be used to create an erection?

Gary responds:
It varies, sometimes we manually stimulate each other before pumping, bringing each other to the "edge" of climax, pumping becomes a part of foreplay. My wife is fascinated by the pump and likes to watch the erection growing inside the vacuum tube. Using the pump is certainly not spontaneous, sometimes we end up both climaxing by manual or oral stimulation and forget about the pump. It depends on the mood at the time. Sometimes the need for penetration outweighs the desire for spontaneity.

Wendy:
Bill and I have worked out a fairly spontaneous routine for intercourse. But sometimes it feels like a routine. There are more options when we try other things like oral sex and mutual or self masturbation. But when we are going to have intercourse, there seems to be just one set of events that we follow. I miss the variety that we once enjoyed.

Gary:
"Spontaneous routine" sounds like an oxymoron similar to "military intelligence" (grin). Having sex daily must get monotonous for you (big grin).

Wendy:
Are you able to do all the same positions as before with the pump?

Gary:
Yes, once an erection is achieved, everything is the same as before erectile dysfunction, except there is a time limit with the constriction bands. Since the bands are blocking blood flow into the penis it is recommended to remove them after 30 minutes. when first using the pump there was a feeling of the "timer is ticking", but after a while you realize that you usually finish faster than 30 minutes anyway. Removing the bands seems like the most awkward part, sort of like rolling over and going to sleep, "I am finished now, excuse me while I remove my cock rings, thanks for the bang" kinda feeling.


Again, this is from Wendy who, to my mind, is one of the best-versed lay persons in the area of post-treatment sexuality :

Bill has (urine) leakage (during sex) from time to time. He had more leakage in the beginning then he has now. I was a little freaked when he had his first orgasm via oral stimulation and there was urine release at climax. I tried not to show that it freaked me out because I could tell that he was MEGA embarrassed. I calmly spit out the urine, and told him that it was not bothersome to me. I immediately asked some knowledgeable folks and found out that urine in my mouth would not cause me any harm. This eased my mind and his also.

Bill has no leakage with the (VED) bands on during intercourse. The band must keep the urine from leaking. This is one of the benefits of (using) the pump. Bill does have leakage from time to time during foreplay. If he is involved in doing pleasurable things to me, he himself becomes very aroused. His penis gets fairly erect, and when this happens there is a small amount of leakage. At first, he was uncomfortable about this slight amount of incontinence. He has had no other incontinence, so this leakage at arousal frightened him.

Again, I tried not to make a big deal about the leakage. In fact, we have found that the leakage can help as lubrication. The urine leakage is similar to the clear slippery fluid that would come out of the penis tip during foreplay before surgery. Perhaps it is the same mechanism that is causing the small amount of urine leakage.

This minor inconveniences can be ironed out when you try to readjust your thinking. Things will not be as they were before surgery… but they will be OK. Half the battle is changing your idea of how the sex stuff 'should be'. In other words, you have to skirt your sexual paradigms. You have to find the balance between the physical changes, and the mental changes that are needed to make sexual experiences successful and pleasurable for all involved.


From the Editor:

Viagra

At present Viagra (Sildenafil) is the Holy Grail of those things available to counteract erectile dysfunction. But, it is far from perfect and it doesn't work for many men. I have found that I had great success with this drug. I could take it in the evening (it works best on an empty stomach) enjoy good sex and then continue to have erections, when stimulated, through the next morning. Erections continued, although the quality of them gradually decreased, through the next couple of days. Therefore, I could use Viagra on a Friday and be pretty well off for the rest of the week.

I did experience three side-effects. The first is that my sinuses began to stuff up forcing me to breath through my mouth. This seemed to clear up during sex. The second was the blue-shift in my vision. Just let me know the stuff was working. If you want to get an idea what that is like, go into a bathroom that is heated by a red heat lamp, turn the other lights off, wait a few minutes and then exit to see the world in a Viagra haze. The third, and in my opinion, and worst effect was the terrific headache that I had for the next 12 hours. I found that taking a couple of aspirin about 45 minutes after taking the Viagra lessened this side-effect. Did I think it was worth the trouble? Absolutely!

There have been reports of people dying when using this drug. Check with your physician and avoid the use of it if you have heart problems or are using heart medication.


From John Fistere:

Implants

Having tried the pump, Muse, and Caverject I went for the implant. Surgeon advised that the recovery period was one year, both for comfort and enjoyment. There was a lot of jabbing pain after the surgery, but nothing unbearable. Stayed on Vicodin for a couple of weeks, I think, maybe longer. I have a loss of sensation over part of the penis, but I expect that to come back. The smaller size is a problem for my wife. I hope and expect that it will become less important as we adjust to it. Mechanically it works fine, and my enjoyment level is increasing steadily.


From Gerry F.:

Implants

On 14, Oct. I had an AMS Ambicor inflatable penile prosthesis installed at UCSD Medical Center by Doctor M. Albo assisted by three Uro residents. The procedure lasted about 2.5 hours. Anesthesia was by injection in the spine. I was conscious the entire time but was not able to watch because of a cloth in my line of sight. I had the same anesthesia for RP, but was made unconscious, evidently by other means. This was the only time that I have experienced complete lack of feeling and control for my lower body-pretty scary. The device was pumped up in the operating room to help with blood control, and then deflated in the recovery room.

Time in the recovery room was two hours. I was then taken to a room just in time for lunch, still unable to feel anything below the waist. I was kept in the hospital two nights in order to receive IV antibiotics. Pain control the first day was IV morphine. The second day, Vicodin. A catheter was kept in place while in the hospital. They let me go home on the morning of the 16th after removing the catheter and seeing that I could urinate. I was given Vicodin and Cipro to continue at home.

The first three days I used maximum Vicodin, then began to cut back. By the seventh day swelling was considerably down, and I became concerned that the device appeared to be partially inflated. I went to see Doctor Albo, and he inflated and deflated the device. That was really painful. But, the bottom line was that it was not partially inflated. My penis is never going to be as limp as it was before. However, it won't be a problem with clothes, maybe a little embarrassing in locker rooms, but I don't spend much time in locker rooms anymore anyway.

Pain and discomfort for this surgery has been worse than RP for me. I guess because such a sensitive part of the body is involved. On the good side, there seems to be no loss of sensation anywhere. I see the doc again in about a month, and I'm not supposed to try pumping it up before then. Recovery has not been so bad that I would not do it again if things work as hoped.

Of course the procedure was covered by insurance. Otherwise, as a government engineer with kids in college, I could never afford it.


From the Editor:

Penile Shrinkage

OK, you've gotten through the surgery , the recovery , you're back at work, you're well on your way to overcoming incontinence and you've found a way to deal with impotence. So you find yourself standing there peeing and look down and think, "You know, I could swear that that thing was not that short before." And, you know what? You're probably right.

Penile shrinkage can happen, to the tune of about 10 to 15 percent. It is not caused by the cutting and shortening of the urethra, which has plenty of slack available. It is caused by scar tissue and blood clots that have formed at the base of the incision. If action is not taken during the first six months after surgery, the shrinkage will become permanent.

This problem can be aided with the use of a VED (Vacuum Erection Device) as an exercise tool.

After first checking with your physician, you use the device daily without the constriction rings, to develop an erection for about ten minutes. This stretches the damaged tissues and helps keep them flexible and keep the hard scar tissue from forming. Some people even claim that it has given them more girth where it counts.


Erectile Dysfunction: A Woman's Perspective

This is by Lynne:

Despite J's libido-less state, we still try. Our situation isn't like most I imagine in that we can't look back and say, "It was great during the first 10 years, etc. etc." We had all of two months after marriage before Combined Hormone Therapy took charge of his hormones and decided we'd have enough. I am now a firm believer in premarital sex! Fortunately our relationship was based more on cuddling than sex from the beginning (4 years ago, I'm 36. He's 51). Of course, I continue to think we were totally gypped. We're somewhat fortunate, however, in that we finally found something that works (some of the time anyway) - injections. His urologist's office mixes up a homemade "cocktail" of several drugs and supplies pre-filled syringes (at) $20 a shot.

I'm sure every one of my friends would be truly horrified to find out that I have to give my husband a shot in his penis whenever I get in the mood. In fact, every time I think about it I myself am truly amazed that I can even go through with it. How can this possibly be exciting??

It actually is, in a weird sort of way. It's as if there's there's all these hoops you have to jump through every time you want to show a physical love for each other. Sometimes you hit the side of a hoop, other times you miss it entirely, and every once in awhile you go sailing right through. It's those times that you remember how much fun it is and wonder why it is you don't make time more often. Every one of us (if we're fortunate enough to be in a relationship) has daily proof, with no hormones in the way, that love is based on all the right things.

We try to make it as fun as possible. It's become a joke, him hinting to me that if I don't watch out he just might have to go get a shot.. me grabbing a syringe and chasing him around the house. We still don't have curtains on the windows upstairs - aka "the shot room" (he doesn't want to associate it with the bed) - so we have to arrange a garbage bag across the window so our neighbor can't see in. What on earth would she think we were doing? His letting me do this to him is definitive proof that he trusts me, although he swears it doesn't hurt. Okay, once it did. I hit a vein and he got a two-inch bruise. Now I know he really, really loves me because he let me try again. Then, after the injection, he has to stay upright, standing or otherwise positioned, for 15 minutes so the blood goes to the right spot. So much for spontaneity.

But when it works, we feel this great sense of accomplishment that carries us for days. Not surprisingly, he often says it's not like it used to be, it's a much more "intellectual" experience. Not everyone could do the things we have to resort to, and certainly no one in their right mind would want to. But I tell ya, I still wouldn't trade him for the sexiest hormone-raging man around. They couldn't possibly be as silly as he is and make me laugh as much.

I don't know if, or how, this affects anyone else. I guess I'm just saying there can be a sex life after Combined Hormone Therapy, Radical Prostatectomy, or whatever the treatment, but you might have to look at it as more a test of your emotional bond than a release of any pent up desire.


And Finally from Wendy:

I think that all of us spouses agree about vows. In my vows, I promised to "love and honor, in sickness and in health, as long as we both shall live." Nothing in there about jumping ship if he couldn't get a hard-on. I plan to stay by his side and fulfill those vows that I spoke almost 12 years ago.

We were told by our first urologist that Bill would "never have sexual function again after surgery." That he "could have a penile prosthesis", but would "not be able to have an orgasm". Then, when we first came on the Circle, (a discussion with) Charlie was taking place. He was hurting because he had lost his erections and ability to have orgasms. So I was terrified those first few weeks and months after diagnosis. As we began to explore regaining our sexual lives and were successful, I believed that it was so important to share information about how we did, so that others who were suffering might find encouragement.

For Bill and I it (our sex life) is more than 'concocting a stiff penis'. We use a (vacuum) device to create an erection, but there is more to it than that. I'd like to share a little about our relationship, because I think that it is so important for others to hear that you can still have a fulfilling, intimate relationship that goes deeper than holding hands.

Bill made the comment recently that I really loved to be touched. It is true, I love to have my head rubbed, my hair combed, my back and neck massaged, my buttocks scratched, my legs scratched and my feet rubbed. I loved to be hugged by Bill, kissed, caressed, massaged and petted. These are all ways of being incredibly intimate, I'm sure this is not news to any of the couples that have had to endure the side effects of this disease. We have also discussed the fact that even though most of the time we can not have sex with a natural erection, our sex life is richer and goes deeper than it ever did before prostate cancer came into our lives. I think that in the early years, we were more focused on our own pleasure, that we didn't think much about each others pleasure. Now we are more focused on each others needs, so we are much more intense then we were 12 years ago.

We view the vacuum pump as something more than 'mechanical sex'. We enjoy each others bodies by doing all of the touching that I talked about up above. We unite ourselves as one as we feel, touch and smell each other. One of our favorite things to do since surgery is to rub our faces together, we do this with the same intensity that we would if we were having intercourse. Skin to skin, cheek to cheek, is such a wonderful feeling...the smells are wonderful.

We do a lot of fun things now like teenagers do... heavy petting then stop and not go further, deep kissing, pretending that my mom is going to come catch us making out in her bed… all silly little things that add to the intensity of our relationship. We didn't do any of this stuff before PPCa it was just 'wham-bam-thank-you-mam (or sir)'. Now we are not so focused on the end result (orgasm), but are more focused on making that connection of the mind, body and spirit. If we both reach climax, then that's an added bonus.

Now as far as intercourse goes, it is certainly different then it was a year ago. It's hard (HA!) to get all hot and heavy and then have to stop to pump UP his penis. It takes anywhere from 15 seconds to two minutes depending on the degree of fullness that he has experienced during foreplay. At one time, I was letting the pumping part turn me off. But I have made a continuous effort to try to turn my thoughts around and view the pump as a kinky sex toy. It's really cool to watch a flaccid penis turn into a stiff one. (Bill does this cute little thing where he pumps to fullness, releases and pumps again quickly. It looks like his penis is doing push-ups.) While he pumps, he reaches over and rubs my hip, it makes me feel so loved. I still continue self stimulation while he pumps.

Intercourse feels the same for me… in fact, Bill's penis has gotten thicker from the pumping. He complains occasionally that the band is a little annoying, but he still enjoys the act. Bill's feeling at climax is somewhat diminished since surgery, and I have had periods of not being able to reach climax. Yet, this intimate act has been so satisfying for both of us.

One of the things that we have shared with each other that makes 'making love' so special is that it is something that happens just between us. We do it together, alone and it is something that we do not do with anyone else. It's a time when we are totally separated from the outside world, and totally enthralled in each other. I think that for us, it is important that we continue this part of our lives even in the presence of Combined Hormonal Therapy.

Bill has told me over and over that bringing me pleasure is his greatest pleasure. He believes that even if he does not want to have sexual pleasure, that he will still want to bring me pleasure. He will be able to do this with or without intercourse. But for as long as we can, we plan to remain sexually active. I hope that these plans won't all change after a few months of hormone therapy… I guess only time will tell.

The guys have so many physical challenges to deal with, and though we do not have a physical affliction, we do suffer some physical losses. We try so hard to support our men... to make them still feel like men. For me, it's important that Bill still tries to make me feel like a woman, in doing that he will still feel like a man. For me, PART of being a woman is having sexual pleasure, and giving sexual pleasure.

The sex therapist at a forum said that if one person in a relationship has a disease the other person is deeply affected. Together they share the negative effects that the disease has on their lives. Some of the most special times that Bill and I have had in the past few months have been when we have cried together. We have held each other close and mourned together the losses that we have had since last November. I have shared my pain and frustration of being married to a man who has a terminal illness, a man who is impotent. He has shared with me his pain and guilt for having this disease. He has shared with me his fear of dying, and of leaving his family behind. He has cried about his lost erections, lost ejaculate and lost sensation. It has been so important for us to share this pain together. It has brought us closer and made our relationship much richer.


Editor's Note:

I would like to thank: JoAnn Hoeber for her editing, all the contributors to this paper, and especially my wife, Janet, for their time, generosity and encouragement. This is a work in progress. If you would like to comment on this paper or If you receive or have ideas about managing pre- and post-operative care, all areas, that are not covered in this paper, or, you have experiences different from mine or the others here, I would appreciate it if you would forward them to me so that I can continue to add to this project.

I wish you Health, Happiness, and Healing - you can choose your own order of importance.

Ron Voss



PRE-OPERATIVE LIST

1. Read books on Prostate Cancer such as The Prostate: A Guide for Men and the Women Who Love Them by Patrick C Walsh, M.D. and Janet Farrar Worthington or A Revolutionary Approach to Prostate Cancer written by Aubrey Pilgrim. In a bit of a lighter vein you might also read Robert T. Hitchcox's book, Love. Sex and PSA.

2. Read or listen to tape Love. Medicine & Miracles by Bernie S. Siegel, M.D.

3. Schedule:
A. Private hospital room with, at least, a view of the sky.
B. Donation of Autologous blood supply approx. three weeks before surgery.
C. Cryopreservation of Prostatic sample, if desired.
D. Cryopreservation of sperm, if desired.
E. A long memorable weekend
F. Time to spend with a counselor or support group
4. Purchase:

A. Loose fitting pants such as sweats, avoid white. B. Long handled bath brush.

C. Shower Safety Bar and have it professionally installed. REMEMBER, it must be able to support your FULL weight in case you should slip or fall!

D. A plastic coat hanger, for between the mattresses at home, to hang your Catheter collection bag from

E. "Rejoice" underwear and pads, or something similar.

F. Either a good quality strong breathable tape or a specially designed catheter securing product
5. Drink at least a glass of cranberry juice every day!

6. Start doing Kegel Exercises whenever you urinate!

7. Start taking Iron Pills (Ferrous Sulfate) before donating Autologous Blood Supply.

8. Make, have made, or purchase, tapes for Pre-, During, and Post- surgery.

9. Shave leg area just before surgery - from crotch, about a 5" wide band on inside edge and top of leg(s) -to accommodate catheter securing tape.

10. Have a haircut.

11. Trim nails

BRING WITH YOU TO HOSPITAL

1. Pillow for return trip to home

2. Toiletries

3. Robe

4. Slippers

5. Books

6. Walkman and Cassettes

7. Photos

POST- OPERATIVE LIST

1. Purchase: Catheter lubricating product - you MUST ask about what is acceptable for your particular catheter. I found that Neosporin worked quite well.

2. Start doing Kegel Exercises as soon as you feel that you can; don't overdo it though.

3. Walk! Walk! Walk! Don't push yourself too hard as that can set you back a bit.

4. Drink at least 8 oz. of Cranberry juice a day, more if you like it.

5. 5. Avoid anything containing caffeine

ADDITIONAL RESOURCES

1. American Cancer Society (ACS) 1-800-ACS-2345 1-800-227-2345

2. National Cancer Institute's (NCI) Cancer Info Service (CIS) 1-800-4-CANCER Cancer information specialists can answer questions and send booklets about cancer. They can also provide information from NCI's PDQ database. In addition, CIS staff have information about national and local resources, and can suggest ways to find support groups and other services.

3. Prostate Cancer Support Network (PCSN) 1-800-828- 7866 Provides up-to-date information about prostate disease. It can also point you to an "US Too" support group in your area.

4. Publications:

A - August 1997 issue of "Consumer Reports on Health"

B - A Patient's Guide to Surgery
Consumer Reports Books, 1994 ($19.45)
1-800-500-9760

C - "Be Informed: Questions to Ask Your Doctor Before Having Surgery"
Agency for Health Care Policy and Research (free brochure)
1-800-358-9295 or www.ahcpr.gov

D - Health Journeys for People Undergoing Surgery
Image Paths Inc. ($21.00)
Two guided-imagery audiotapes.
1-800-800-8661

E - Guided Image~ for Stressful Times
Cleveland Clinic Foundation ($20.00)
Two audiotapes for surgery.
1-800-223-2273, ext. 41700



ON-LINE RESOURCES

(Parts originally excerpted from a list Compiled by Richard Trax, Modified by Nancy Peress. Due to constant changes on the iInternet addresses my not be 100% current. )

MAILING LISTS

1. Prostate Problems Mailing List (PPML)

This is a medically intensive mailing list focusing primarily on the diagnosis and treatment of prostate cancer. To subscribe, send and e-mail
To: LISTSERV@ listserv.acor.org
Subject: (blank or a dash)
Message: subscribe prostate your-first/last-name
(example: subscribe prostate John Doe)
Or, subscribe via the web:
Go to the Web page.

2. Physician to Patient (P2P)

This list is to provide the prostate cancer patient or other interested parties with information from physicians about the treatment of prostate cancer. This is a moderated list without the high volume normally associated with mailing lists or the frequent off-topic questions. To subscribe, send an e-mail
To: majordomo@www.prostatepointers.org
Subject: (blank or a dash)
Message: subscribe P2P
end

Within a few minutes, you should receive a confirmation message from majordomo. Please follow the instructions exactly in order to activate your subscription.

3. The Circle

Offers emotional support to wives, families, friends, and of course, the men themselves. Outstanding support resource. To subscribe, send and e-mail
To: majordomo@www.prostatepointers.org
Subject: (blank or a dash)
Message: subscribe circle
end

Within a few minutes, you should receive a confirmation message from majordomo. Please follow the instructions exactly in order to activate your subscription.

4. Prostate Cancer and Intimacy (PCAI)

PCAI is a moderated mailing list for frank and open discussion of the sexual issues surrounding prostate cancer. To subscribe, send an e-mail
To: majordorno@www.prostatepointers.org
Subject: (blank or a dash)
Message: subscribe pcai
end

Within a few minutes, you should receive a confirmation message from majordomo. Please follow the instructions exactly in order to activate your subscription.

5. Virtual Library

A library of documents available by e-mail to those without access to the World Wide Web. You may access the Virtual Library by sending an e-mail message
To: majordorno@www.prostatepointers.org
Subject: (blank or a dash)
Message: info library
end

This will return complete instructions for getting a current index of files and ordering the ones you would like.


PROSTATE CANCER WEB SITES

1. The Wellness Web
http://wellweb.com

2. Prostate Cancer Dot Com
[no longer on line at http://www.prostatecancer.com]

3. The Prostate Cancer InfoLink
[no longer on line at http://www.comed.com/Prostate/]

4. The [CoMed InfoLink) prostate dictionary
[no longer on line at http://www.comed.com/Prostate/]

5. PSA Rising Magazine
http://www.psa-rising.com

6. Prostate Pointers
http://www.prostatepointers.org/prostate

7. Search Rattler for information valuable to you.
http://www.prostatepointers.org/search_form.html

8. Prostate cancer glossary of terms:
http://www.prostatepointers.org/prostate/ed-pip/glossary.html

9. Organize your PC digest
http://www.prostatepointers.org/rtrax/pcdigest.html

10. Site for PPML archives :
http://listserv.acor.org/archives/prostate.html

11. The pioneer in Cancer web sites:
http://www.oncolink.com/

12. Phoenix5 with interactive glossary:
http://www.phoenix5.org

To Contact Us:
Write to:
Ron Voss & Janet Olson
16076 SW Waxwing Way
BEAVERTON, OR, 97007
E-Mail:
revoss@earthlink.net
Phone:
1-503-590-4434

Ron Voss & Janet

(Reproduced at Phoenix5 www.phoenix5.org with the kind permission of Ron Voss.)


 
 

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This information is provided for educational purposes only and does not replace or amend professional medical advice. Unless otherwise stated and credited, the content of Phoenix5 (P5) is by and the opinion of and copyright © 2000 Robert Vaughn Young. All Rights Reserved. P5 is at <http://www.phoenix5.org>. P5's policy regarding privacy and right to reprint are at <www.phoenix5.org/infopolicy>.