Ask Amy … to Get a Woman’s Point of View

Sometimes even men can benefit from a female point of view on what appear, at first sight, to be exclusively male health issues.

ask-amy-sm.jpgAmy is the wife of a long-time prostate cancer patient who has agreed to offer her experience in whatever way she may be able to help. In particular, we believe she will be able to give suggestions and guidance to the wives, partners, mother, sisters, daughters, nieces, and female friends of prostate cancer patients as those patients go through the difficult processes of diagnosis and treatment for a disease that is emotionally unsettling for most men.

Please understand that Amy is not a physician. She is “just” a well educated laywoman with very personal experience of prostate cancer and its problems. She cannot provide you with medical advice. You should always talk to your doctor about your clinical condition and how it should be managed.

You may post your question for Amy using the comments / reply box below. Questions and answers are retained on this page for approximately 60-90 days from the time they are originally posted.

54 Responses

  1. Amy:

    I am a 62-year-old man recently diagnosed with T3b, high-risk prostate cancer with Gleason scores of 9 and 7 who just started external beam radiation targeted to the prostate and the general pelvic region (in case it has escaped the prostate capsule). I am also on bicalutamide with hormone injections to start next week. I am in great care here in London, Ontario at the London Regional Cancer Clinic and know that the treatment is aimed at cure and not management.

    My question is more for my wife and I and our intimate life together. My wife is 8 years younger than me, also robust, and we have enjoyed a fabulous physical and emotional intimacy throughout our 10-year relationship (7 years married). What successful strategies are you aware of to help us bridge the 3 years of impotence that we are expecting? I know this is a very delicate subject and we are not adverse to oral pleasure and know about toys. What can I look forward to in terms of my wife’s needs, and best ways to solve them?

    Amy responded as follows:

    Dear Ric:

    What your wife needs from you more than anything else is probably to know that you love her and that you will always talk to her about what you are feeling and what she is feeling. Then you can make good decisions together about what you both want to do about any specific issue. However, you and she need to discuss what she needs, together. You don’t need my help to do this!

    In my relatively limited and personal experience, most of the problems related to physical and emotional intimacy associated with prostate cancer (and many other sexually related medical conditions) are the consequence of (a) a failure to communicate and (b) the fact that so many men define their relationships with their partners in terms of their supposed sexual prowess (as opposed to their frequently limited ability to understand that intimacy is first emotional and only secondarily physical).

    So my advice is simple. Talk to each other. Think of this period as starting dating all over again. Go dancing. Take her out for romantic dinners. Make her feel loved. The physical bit will take care of itself if you are both delighting in each other’s company. Every day is a new opportunity to surprise her with something … however small.

    Amy

  2. I feel confused. I am dating a prostate survivor whose divorce is pending. His wife didn’t want physical relations and asked for a divorce. My confusion arises because he seems to enjoy me, communicates daily. Yet when we’re together he never initiates touching.

    We have been going out several months with just a chaste kiss and hug. Us this a common situation for a man who is a prostate cancer survivor? What should my role be? He a prince of a guy. But I need to feel desired. What to do?

    Amy responded as follows:

    Dear Julie:

    So there is dating and friendship and a fond relationship and then there is love, passion, desire, and …

    There is a series of very fundamental questions that — sooner or later — you and your survivor need to face up to, which include “Can he?” “Does he want to, but is nervous about his performance?” and “So, are we going to?” In a “normal” relationship, these questions never have to be put into words. However, …

    Some prostate cancer survivors are unable to get an erection at all. Some of those who can’t get an erection at all have found ways to deal with that (e.g., through the use of penile implants or other methods). Some can get an erection but it is not exactly what they used to be able to manage (and they can be very depressed about that). Some can get a decent erection if they use drugs like Viagra or Cialis. And some prostate cancer survivors are completely functional.

    I know that in most cases it is customary for the man to do the desiring and the woman to be the desiree (so to speak), but I came to the conclusion some time ago that in the situation you describe … if nothing is happening after everyone has reached the point in which one might reasonably expect something to be happening … there is a responsibility that falls to the woman to find a way to reach her hand across the table at dinner and say, “So I think maybe there’s something we really need to talk about now that we’ve been out on date 32.” And then one does need to talk about it.

    The resulting outcome depends on all sorts of factors, but the defining criteria for moving beyond where you are is that everyone is going to need to put their cards on the table (again, so to speak). Until you understand the limits of the possible, and he understands whether you can deal with the limits of the possible, your relationship may be stuck exactly where it is, because he probably doesn’t know how to take the next step.

    Does that help?

    Amy

  3. Hi Amy.

    I am currently seeing a man who is going to have his prostate removed. The relationship is still new (less than 6 months) and he has been very shy and refuses to talk about the situation at all. I want to know how I should deal with this and what might change in the relationship after the surgery.

    *****

    Amy responded as follows:

    Dear Robin:

    I’m going to be straightforward, so please excuse some of the language below, but it’s important!

    While, as the saying goes, “Men … You can’t live with’em and you can’t live without’em,” you are facing a situation in which the apparent inability of the man in question to deal with reality brings this into close focus!

    I am quite sure that the man in question is having a real problem knowing how to talk about all this to you or to anyone else. This is (regrettably) normal. Why? Because the potential side effects of having surgery for prostate cancer are emotionally devastating for most men, who tend to measure their “maleness” in terms of their perception of their sexual prowess (regardless of how accurate or inaccurate that perception may be).

    On the other hand, if he wants to build a long-term relationship with you, he’d better find a way to come out of his shell and talk about it. If he can’t, then it seems to me that the whole relationship is probably doomed because it is a signal that the relationship is built on sand (or something else that won’t last forever). It is extraordinarily hard to build any good long-term relationship on a foundation that lacks honesty of communication.

    You have presumably tried being gentle and kind and using the “I just want to know how I am going to be able to help” approach. So a lot depends on the details of the nature of the current level of the relationship (i.e., what, exactly does “I am currently seeing a man” imply?).

    If “I am currently seeing a man” implies regular horizontal and mutual entertainment, then it seems to me that the next time this starts you need to take advantage of the situation after you are both in bed and he is well “primed” and say (with a big smile), “Stop. I wanna ask you something? Are you sure we’re still gonna be able to do this 6 months after your surgery? …”

    I mean, he simply can’t promise you that. It’s just not a promisable eventuality. He may want to be sure but he can’t be — and neither can his surgeon. So then you have the opportunity to pull the rug out from under him fears by saying (if it is true), “… because I can think of all sorts of other ways that we will still be able to have fun if you can’t!”

    The pair of you are at a key moment in the evolution of your relationship. If this is something you can laugh about together and agree that there are ways to get beyond it, that will be great. If he just won’t talk about it at all, under any circumstances, I think you need to think hard about how much further you want to take all this.

    If the relationship hasn’t reached the level implied above, then you have an even bigger challenge because you are basically faced by someone who won’t talk to you about one of the most important things that is ever going to happen to him. And you don’t have the same level of leverage to address the situation. What does that imply about all the other things he may never feel able to talk to you about?

  4. Amy:

    My question: Why am I so angry at my husband for having prostate cancer and not being able to be intimate with me?

    He was diagnosed 7 years ago, at a time when our marriage was very fragile. He had just confessed to me he was having an affair with a younger woman. I reacted as any healthcare worker would and insisted he get tested for STD. Within 15 days, we were in a whirlwind of his diagnosis and surgery and treatment. His cancer was advanced and out of the capsule. We have never had sex since. We have tried many times to be intimate, but anger creeps in. I can’t help but feel like my husband is gone. I know the man is here, but my prince is gone. I loved him so much and all of this was a terrible shock. I miss our intimacy. I just can’t get over all of it.

    I have been to counseling … and it works for a while and then I begin to mourn the loss of our life as it was. He has on a rare occasion wanted to “please me” as he says, but it turns out a disaster. I always think of how “she took the last of my man.” He has changed in so many ways. He is very clingy to me, never wanting me away from him overnight. He is afraid that I am going to cheat on him. I have never and would never inflict that pain on anyone, as I know how it is. Will I ever be able to accept our intimacy as it has to be now or should we just hang it up and get over it. I am just turning 59 and I feel like the last 7 years has aged me immensely.

    Amy responded as follows:

    Dear Nita:

    Clearly the entire experience has been very distressing for you — and probably for him to. It is hardly surprising. The underpinnings of your relationship were severely damaged not just once but twice — within weeks. He has become scared and “clingly”. Why, because he loves you but he feels he has lost the ability to “be a man” in your eyes. You still feel both betrayed and (physically) rejected … to the point at which you can’t even accept his attempts to be intimate. And you (apparently) can’t completely forgive him for the original stupidity … which he must have been feeling bad about if he confessed it and you hadn’t seen that coming.

    I am not a professional counselor, and I really don’t know what to tell you about how you can deal with such circumstances. What is clear to me, however, is that nothing good will happen unless and until you can both put the past 7 years behind you. He has to learn to let you have a life of your own. You need to stop thinking about what you have lost and start accepting and thinking about what you really want (which is certainly not just sex). You seem to need new goals to strive for together and individually, because it sounds as though you are both just “going through the motions” of being a couple without actually acting as one.

    There is a way to deal with the sex problem, and that is for him to go and get a pemile implant — if you can afford this. Many men who have done this feel as though it has “re-masculinized” them. However, this procedure isn’t cheap.

    So to deal with your actual question, I really don’t know why you are so angry with him. I can think of a thousand possible reasons — and many of them are really good ones! But the problem that needs to be addressed is what you both need to be able to do — together and separately — to make that anger go away. It’s gonna take two!

  5. Hi Amy,

    My boyfriend had a spinal cord injury years ago. He cannot have an erection and a few months ago he said that he was thinking about having an implant done. I told him that please do not do this on my account, that I love him the way he is and that we get very intimate, and I’m happy the way things are between us. He feels that he’s not equally sharing with me. That couldn’t be farther from the truth. To add to this he found out that he has prostate cancer. He is undergoing radiation treatment for a total of 9 weeks.

    He doesn’t want us to see each other until after the treatments. For one thing he says he can’t feel he can keep his hands off me. Well, I feel the same. But I understand his concerns. He just started after the completion of 2 weeks into radiation therapy to feel the side effects of fatigue, frequent urination. He’s a trouper. I feel helpless during this time. Is there anything I can do besides offer him encouragement and let him know that I am just a phone call away? I really love him, he’s a great man. Any suggestions?

    Thanks

    Moonstruck

    *****

    Amy replied as follows:

    Dear Moonstruck:

    So if I was in your position I would be sending him silly gifts and postcards a couple of times a week. (I’ll let you get creative about thinking what sort of silly gifts and postcards!) Just because he’s being a dumb, isolationist male doesn’t mean that you can’t be the one who optimizes the creative interconnections! And why does he have to “keep his hands off you” during his treatment anyway?

    :O)

    Amy

  6. My lover and I met again after 50 years and we are very much in love. It has been so cruel to learn that he has prostate cancer, and is having hormone treatment and then radiotherapy. I love him so much and want a life with him, but he seems to be so quiet with me since the diagnosis and never talks of love now, although he says he still loves me very much. How can I help him.

    Pat

    *****

    Amy relied:

    Dear Pat:

    Your friend is struggling with the implications of his mortality … as well as with the practical necessities of treatment for his prostate cancer. You can best help him by giving him distractions that take his mind off the cancer and are just “old-fashioned fun.” Forget the “love” thing for a while. That is going to remind him that standard sex is going to be a problem. What you can do is make sure you go do “ordinary” things together regularly. Go to the movies; go dancing; go for walks in the evening; ask him to do simple things for you like digging over the flowerbed so that you can plant things. What your friend needs more than anything at the moment is a sense of normalcy so that he can realize how to — and have the time to — adapt to the change in his situation. Help him to achieve that sense of normalcy.

    Amy

  7. Dear Amy

    Thank you for the above answer. My wife walked out when my prostate cancer was diagnosed just under 2 years ago. I’m now 54. I previously had a healthy, active, regular love life

    Now, after a CyberKnife process 19 months ago followed by and an intense course of radiotherapy (14 doses), ED is total for me. Is it likely that this will recover in any degree?

    This is playing hugely on my mind, and not helped by other pressures — divorce, resolving the access and contact arrangements for our children and step-children, plus money and work and the horrible reduction in my general strength and ability to lift, carry etc.

    I am suffering from depression as well, due to circumstances, and having no-one to support me has made that so much harder to cope with.

    Recently I have (very unexpectedly) fallen for someone — but — I am at the beginning of our relationship; nothing has yet “happened,” beyond holding hands and kissing and cuddling. She senses “something” is not right and is being very loving and supportive — amazingly so for someone who I’ve just got to know. … I am struggling to get into my head the best way of explaining the effects of prostate cancer and ED.

    Can you offer any guidance please?

    *****

    Amy replied as follows:

    Dear Graham:

    First, let’s talk about the ED. I think we may need to accept that recovery of good, “normal” erectile and sexual function is highly unlikely if there have been few “signs of life” after 19 months. … And I am assuming you have tried using drugs like Viagra to see if they would be of any help. Yes? So this leads to the question of whether you have consulted a specialist in erectile dysfunction to have a serious conversation about what could be done to help with this … up to and including the possibility of things like a penile implant.

    Second, there’s the issue of the depression associated with all the other stuff. It sounds to me as though you are ready to “let go” of a lot of that. This will be helped if you can persuade yourself to give more attention to your general health and fitness. You aren’t going to be able to turn yourself back into an 18-year-old, but making really sure that you are eating well and exercising regularly will help you to feel better about yourself physically and know that you are doing what you can to maximize your level of vigor.

    And then there is the issue of the new person in your life. …

    It is going to be a difficult conversation, but you are going to need to start explaining the situation to her. If you want a real relationship with this woman, it has to be based on honesty and trust above all else. And in having that conversation you need to focus on what you are doing to “make the best” of the situation. It’s OK to tell her that some of this can “get you down” at times, but the important thing is going to be to focus on the positive and how you feel about her and why she needs to need to know the whole truth, so that she is under no illusions or mistaken expectations. I think you know what you are going to need to tell her. What you need to work out is how to tell her while making it more about her that about you. And give her lots of opportunities to ask questions rather than just doing a “data dump” on her. OK?

    I hope that helps.

    Amy

  8. Thank you Amy. My new partner and I are talking things through.

    As she says, there are so many other ways to make love, as well as the “obvious”. She has put me on a diet, and has dragged me kicking and screaming (not) to early bed each night since reading this — to make me relax.

    And I don’t want to change him for another man, he’s lovely even with this issue x Nina

  9. Thank you Amy, I will try my hardest to do as you say. I must add, we love experiencing the lovely normal, everyday things together, and look back on our lives to realise that we have missed such a lot by not being together all these years, so really the normal things are very precious to us.

    Kind regards,

    Patx

  10. Dear Amy,

    I am, sadly, about to end a 30-year marriage with my husband, who had prostate surgery 15 months ago. Like most prostate cancer survivors he has complete ED, as well as a significantly lower libido. He is also severely depressed, has completely let himself go physically, and drinks too much.

    I am so lonely, so distraught that I simply can’t go on. All communication (always a tough thing for us) has stopped, and I am no longer willing to be the one trying to fix this mess.

    Here are my concerns:

    (1) I am so angry. I’m angry with the medical establishment that they did this to us and then left us completely alone as we struggled to deal with it. I tried everything I could to get us help — even as soon as he was diagnosed — but it just felt like no one took our intimate life seriously. While he was focused on getting rid of the cancer, I was concerned about our relationship — but no one cared about me, I wasn’t their patient! So, they saved my husband, but wrecked his life.

    (2) I’m also angry that there is a lot of discussion in the news about diagnosing/treating prostate cancer, but so little about the quality of lives of the men and their partners after they are treated. It all feels like a big lie, or a cover up.

    (3) I don’t want him to be alone the rest of his life. I sincerely hope he can meet a woman who, perhaps, has different sexual and intimate needs than me. But how will he ever be able to communicate with someone new, when he can’t even communicate with me?

    Anyway, what a heartbreaking mess this is. Thank you for being on line to discuss this honestly, and to give a voice to the other victims of this awful disease.

    *****

    Amy replied as follows:

    Dear Clara:

    I am probably going to get a lot of negative comment from some people after this, but I feel obliged to say what I think is right.

    First … Far too many men (and sometimes far too many of their family members too) don’t do anything like enough homework when they hear the word “cancer.” In some cases, their doctors also fail (badly) to give them a full appreciation of the risks associated with treatment, but that is not always the case. What my experience has told me is that prostate cancer is over-treated for a host of reasons, but a great deal of that has to do with men simply not wanting to really look at what they are getting into and not listening closely to what they are being told … and sometimes other family members pushing them into treatment that may well be unnecessary.

    Second … While I understand that the sequelae, side effects, and complications of treatment of prostate cancer can come with all sorts of aggravating impact, I no longer have a lot of sympathy with the male depression that seems so common. People lose eyes, legs, arms, all mobility, their homes, their children’s lives, and are able to rebuild positive lives afterwards. The will to just deal with what happens in life has a lot to do with how other people see us … and a man who lets the complications of localized prostate cancer make him severely depressed and start drinking heavily is hardly going to be a person that most of us would want as a regular acquaintance, let alone a soul-mate. Sometimes we all need to be able to swallow hard and say, “Okay … so this is something I just need to deal with.”

    Third … I think you are right to have decided that you needed to “move on”. The ED is one thing. The loss of any will on the part of your husband to make himself helpful, amusing, entertaining, and even (God forbid) sexually desirable to you is quite another. It demonstrates a degree of self-centeredness that I don’t see as justifiable. The fact that you are still willing to worry about whether he can “pick himself up and start over” demonstates (at least to me) the clear difference between where you are coming from as opposed to where he is coming from. People who sit and feel sorry for themselves become very unattractive very rapidly. At least if we know someone is making an effort to cope, we are willing to cut them some slack, give them some time, and even help them to actually succeed.

    Fourth … You have every right to be angry. You are going through the same sequence of shock, denial, loss, anger, and acceptance as does an actual cancer patient. Anger is a very normal step along that path under the circumstances. But just as your husband needs to let go of his denial and loss, you will need to let go of the anger. After a while you will find that it is simply not constructive … and you will need to move beyond it. Could society be doing a better job of dealing with this disorder? Of course it could. And some members of the medical community and the news media and others are actually trying very hard to do that … but there is a long way to go.

    Last … By no means do I believe all men have this response to prostate cancer. For a strikingly reverse extreme, one can look at this web site someone told me about just the other day … built, apparently, by a couple who feel that his prostate cancer actually revolutionized their intimacy in a very positive way. (Whether everyone would be able to have that respnse is perhaps open to question, but clearly some people have this type of coping mechanism.) This may not be possible for your husband. We are all different. But we should all have the determination to make the best of our lives, regardless of the hand that we get dealt by providence (or even by a poor physician).

    I have no idea whether this will be of any help, and maybe it will seem “cold”, even to you. I hope not … but it is part of how I have come to see this little piece of our world over recent years.

    Amy

  11. Thank you Amy, It does not seem “cold.”

    I guess it isn’t news that some people cope better with adversity than others. While bad things of all sorts can strain some marriages, others will overcome. Perhaps the tough thing about prostate cancer side effects is that they really can impact a couples’ intimacy – just when you need it the most. I know couples who have overcome horrible things – loss of children, bankruptcy, etc. – but they’ve overcome them together, I suspect at least in part, because they’ve been able to find solace in familiar arms and familiar closeness. Somehow prostate cancer robs too many of us that, leaving such a terrible hole.

  12. Dear Amy,

    I need someone to talk to and maybe just typing this will be helpful enough.

    I met a really nice man 3+ years ago, 20+ years my senior. I was 48 somewhat settled; he 68; we dated and he was the perfect gentlemen. As time went on I began to have some feeling for him, not love but feelings.

    As we continued to date, he had to go in the hospital to have surgery. He said it was nothing serious and I took his word on that. What I didn’t know was, he was having an implant inserted due to ED. I didn’t know he had had prostate cancer almost 15+ years ago. He has always been the shy type and I just thought it was his way. He always was the type to avoid the lights being on, covering up, and he would shake if I tried to touch him. Like I said, him being older I took him as shy and that really didn’t bother me because I understood. (I thought it was refreshing.)

    One day I asked him if there was anything that he needed to tell me because something wasn’t right and I couldn’t put my finger on it but something wasn’t right. With the surgery he has a leak and I didn’t know he had to wear a pad. I was getting a slight yeast infection because we stop using condoms. He went and poured himself a big drink and confessed his ED, cancer, and a few other things. He was surprised that I didn’t freak out. I stayed calm and asked why he didn’t tell me before we got involved. He said he was scared and he was afraid of losing me.

    It took a few months but we talked a lot and moved past that. A year later we got married and I don’t know what happened. He started acting like an typical man: full of himself. I have been a stay at home wife and now he tells me that I need to work, that we don’t have enough money and other couples work and I should get a job to pay my bills. I married him for security, and he knows that, and I have accepted everything about him and will not hold it against him in exchange for the life that I have now. I confess sex with him has been a challenge. How do I tell him without bringing up the subject of his past. He’s been experiencing a few medical problems and I can’t help but wonder if he thought I would be his nurse and not just a wife.

    *****

    Amy replied as follows:

    Dear Gator:

    So I have been looking at your implied “question” (“How am I meant to react to this change in behavior?”) for most of the morning.

    There is a well-understood set of male behavior patterns in which men who initially come across as charming and mild mannered later appear to change their behaviors and seek to become controlling of the behaviors of others (to a greater or a lesser degree). Such behavior change can often occur once the male in question believes that the (in his mind) “subordinate” partner has in some way become “his” to control. Why such behavioral change occurs, I do not know. I am not a psychiatrist. What I do know is that confrontation of such men can be difficult and sometimes even dangerous.

    The bottom line here is that you did not “sign up” for what is now being suggested and implied. Why it is being suggested and implied, I have no idea. It could be no more than fear in the mind of your husband that his health is failing and he needs help.

    Clearly you do need a way to confront your husband about these demands and get the cards on the table. However, you may want to be careful about how and when and where you do this since he may not react well to such confrontation.

    Please understand that I am not trying to suggest that there is necessarily any great risk of violence here. He may just do what he did last time: get himself a stiff drink and say, “I’m really sorry. I’ve been feeling really stressed because it doesn’t look as though I’ve got the savings and the pension income that I thought I was going to have. I haven’t behaved very well about it have I?” On the other hand, you might want to initiate this conversation somewhere where, if he does have a bad and explosive reaction to the implied criticism, there are going to be other people around.

    The other thing is that “his past” may all be very much a part of this, and bringing it up may be a necessary part of the necessary conversation. On the positive side, you have already been through one conversation like this together, and you were both able to get beyond it. If you aren’t able to tell him that you don’t understand what the heck he thinks is going on in his head, then there really is a problem. Every so often, most wives need to be able to look their husbands square in the eyes and say, “Jimmy … You’re a great guy and most of the time I love having you around … but sometime you start to behave like Clint Eastwood on steroids and it is significantly less than attractive! So … what’s going on?”

    I hope this is of some help.

    Amy

  13. I think I know what the problem is. He went to church today and before he came home he had a drink or so and just snapped at me. Could this be playing a factor because Clint Eastwood comes out more when he drinks.

    *****

    Amy replied:

    Dear Gator:

    Alcohol rarely helps people to deal well with fundamental issues of emotion and communication. On the other hand, in and of itself, alcohol is also probably not the basic problem, which is likely to be much more deeply seated. People who drink and then snap at others usually need to work out how to deal with something that the alcohol is helping them to avoid dealing with.

    Amy

  14. What happens if a man doesn’t have sex after prostate cancer? Will he need more surgery?

    *****

    Amy replied below:

    Dear Robin:

    You’ll need to excuse my naivety, but I am a little puzzled by your question.

    Are you asking about what happens if a man is unable to have sexual intercourse after being treated for prostate cancer or are you asking what happens if he is simply unwilling to have or uninterested in having intercourse after prostate cancer?

    The treatment of sexual dysfunction after a diagnosis of and treatment for prostate cancer depends on many related factors. There is no “simple” surgical solution to this problem, although surgery would certainly be involved under some circumstances.

    If you can give me some more information I can try to give you a better answer to your question.

    Amy

  15. Dear Amy:

    I am an 83-year-old man first diagnosed with prostate cancer in 1996. I’ve survived all these years under the excellent care of Memorial Sloan-Kettering and a variety of medications (Lupron, Casodex, etc., etc.), all of which ultimately stopped working. For the past year, I have been doing excellently well with Zytiga (PSA currently at 0.35) which was provided for 1 year by J&J’s Patient Assistance Program. Now they have denied (but are re-considering) my application for another year of the drug under patient assistance.

    My concern with this situation is not only for myself but for the thousands of middle-class prostate cancer patients out there who are neither wealthy enough to pay the retail price of $7,500 per month nor poor enough for the company’s stringent and somewhat Byzantine procedures in order to qualify for patient assistance. So, in effect this makes the drug available to the wealthy and to the indigent, leaving a vast number of middle-class patients in a very precarious situation of having to dismantle retirement savings and/or otherwise imperil the remaining financial stability, well-being, and dignity of healthy spouses and families, all of whom can expect many more years of life.

    While it is understood that developing these “miracle drugs” is a very costly business, it would seem to make far more sense for these drugs to be marketed to a much wider (middle-class) market at affordable prices than to restrict sales to the segment of the very few very wealthy and the continually growing segment of the very poor.

    My question to you is: Why? And do you see any end to this huge inequality? And how can we organize to pressure change in this?

    *****

    Amy replied as follows:

    Dear Rod:

    The entire financial structure of the American health-care system is Victorian in both concept and execution, and it is rife with “special interest” groups of 1,001 types who all either want it to change to give them greater benefits or not to change so that they don’t lose the benefits they have. The whole thing is a walking nightmare, and while I certainly don’t agree with everything in the Affordable Care Act, I also see that act as simply a beginning toward a rational, modern health-care system in which patients know exactly what things really cost and health professionals (including the pharmaceutical industry) are all required to explain why things cost what they do so that people can make real decisions about “value”.

    The way drugs are priced today is driven by what the law allows drug companies to do and what the law allows physicians, hospitals, and payers to do. Since the relevant laws were all written with massive input from the lobbyists for all the different interest groups, we have the inevitable dogs’ breakfast in which the priorities of the middle class came last because they are the least well-organized with the least lobbying power.

    I have absolutely no meaningful idea how to change the current status quo to something more sensible and equitable. And as far as I know, at this point in time, neither does anyone else. On the other hand, almost everyone understands that the current system is crazy and unsustainable. But for everyone who wants to make changes in director X or direction Y, there are always five other people who will immediately say, “You can’t do that because ….”

    This precise question came up earlier today during a phone conversation Amy was having with a friend in the pharmaceutical industry. Amy’s friend knows that the way the system works now is nuts, but he has no more idea about how it could be changed than Amy does, because investors in the pharmaceutical industry take large, long-term risks with their investments and so they expect a very high level of profit when profits are forthcoming.

    The only people who have the power to actually make any sense of all of this would be Congress … but in case you hadn’t noticed, our elected representatives are all more interested in arguing about philosophy than they are in actually doing things in the interests of the American people ….

    I wish I had answers to your questions …. I just don’t! But I am glad that drugs that have been developed over the the last 30 years have been able to help you for as long as they have. And I hope that J&J will renew your patient assistance for at least another year.

    Amy

  16. Thanks for your response, Amy.

    I’m sure you can understand how amused some of are to watch the currently most popular series on televison. Of course, I mean: “Breaking Bad” about a mild-mannered high school chemistry teacher who learns he has inoperable lung cancer. He has no money and many debts — a condition he does not want to leave saddling his wife. So, he turns (in broad parody, played straight) to producing crystal meth in an improvised lab — and an ever-spiraling life of crime. Very funny — but also dead on with all of us with advanced cancers and facing humongous charges for those Big Pharma “medical drugs” that have the promise of extending our lives.

    Needless to say, not a path any of us intend to follow in real life, but a stark picture of the conundrum we face.

  17. Dear Amy,

    I’ve been looking for a “site” like this since my husband was diagnosed with prostate cancer at the age of 54, almost 10 years ago.

    We went through various stages of handling the trauma and changes; he was sure he would be “cured” because the doctors and hospital claimed a “high success rate”. Well, that did not happen.

    I learned to pretend I was having a great time with 30 seconds of foreplay and 45 minutes of waiting while he was working with the machinery he was told to purchase until he came back to bed. It was all very difficult and awful; he had terrible side effects, and continues to do so, and for a man who did not like to talk about any of it, it was incredibly stressful. I was supposed to pretend that everything was “just fine”, and of course I was glad the cancer was gone. But it was at a high cost, and he was unprepared.

    The stress, for me, has been intense. He has stopped touching me, kissing me, hugging me. I broke down and told him there was a wall in every aspect of our life, because I was not allowed to touch him, or initiate affection, and our bed had an invisible wall. Sex stopped 4 or 5 years ago; he moved to a separate bedroom, and we are housemates. I finally bought my own sex toy — last woman of my generation, probably — and have been on various antidepressants. Not him. I feel we are living a lie to our grown children and friends and I hate it. I care about him deeply, but this is not how I want us to spend the rest of our lives.

    We only attended the local “support group” twice, at the very beginning, but he did not find the other men’s discussion helpful — he had made his choice (surgery), and found the life afterward to be a whole new world. No one wanted to talk about that. I was the youngest woman in the woman’s group and felt our marriage was too stressed to act perky and hopeful when some women were facing critical health situations with their spouses.

    He has found, in the past year, diversion and happiness in exercise. It relieves his stress, gives him something to do, and the instructor is a young woman. He goes every day of the week. It is convenient to his work and at the crack of dawn; it is completely inconvenient for me, and I have health issues.

    I feel the medical establishment in this, as in many other situations, felt it “did its job” by diagnosing his cancer and then giving him choices in how to deal with it (cut it out). No one talked much about what would happen afterward, and for how long (side effects). No one provided a counselor for me, or rather, I did not know how to find one. He refused to attend or seek sex counseling, so perhaps a lot of this is his “fault”.

    I know many men and woman lose a limb, or become seriously disabled from illness or accidents, and have had chronic pain issues myself. But it has been a rotten 10 years, it was a rotten 3 years, and it is difficult to imagine a future “retirement”.

    He just does not want to acknowledge the situation.

    *****

    Amy replied as follows:

    Dear Anna:

    I have read through your message above four times now. I would like to have something truly brilliant to suggest. Sadly, I just don’t!

    Obviously this is by no means the first time the inability of the patient to “acknowledge the situation” has come up. It is one thing to be patient and caring and give one’s husband or partner time to adapt to a new reality. It is quite another when that adaptation fails to occur. At some point, that new reality has to be recognized, acknowledged, and acted on. Ten years seems like more than enough time to me.

    Your situation reminds me of watching politicians “come clean” about their serial misdeeds while their “loving wives” stand passively behind them being “supportive.” At some point one inevitably has to ask, “Who is kidding whom?”

    I have no idea whatsoever what you can do at this stage to recover from what has clearly been a complete breakdown in communication between you. Is someone to “blame”? Probably not. You were both faced with a whole new and complex situation, and he just seems to have been unable to adapt. It happens. However, you can hardly be expected to just lie there like a doormat and accept his approach to what has occurred.

    The question now is, “If he can’t accept reality, are you going to accept that he can’t accept the new reality and (potentially) never will? And if so, when, and by doing what?”

    I have a difficult time thinking that this can “help” in any meaningful way … but I just can’t think what else to say.

    Amy

  18. Hi, Amy,

    As a prostate cancer survivor and intimacy coach I’ve been deeply moved by the poignant questions of prostate cancer patients and their partners and by your responses to them.

    Next month I will be a panelist at an event in Dallas sponsored by Cure magazine. May I have your permission to cite your thoughts re: two cases involving some patients’ and partners’ disappointment with the medical establishment leaving them high and dry? Also, may I distribute both postings in their entirety to the 75 participants at the conference, with full attribution to you? I refer to one in June and the other this month (October)?

    Continued success in bringing profound awareness and comfort to your many viewers.

    Rabbi Ed Weinsberg, EdD (www.LovingAfterCancer.com)

    *****

    Amy responded:

    Dear Rabbi Ed:

    First, thank you for your very kind comments. I just do what I can, and I certainly don’t consider myself to be any sort of expert on anything. I just try to help people who need to talk to someone.

    Second, thank you for asking permission to use and distribute the information you refer to. Many people today wouldn’t even ask, but I am rather old-fashioned about that sort of thing, so I appreciate it.

    Third, if you really think it would be helpful, please feel free to use these questions and my responses as you see fit. And if you think there are better or alternative answers to these types of problems, please do let me know … because I always feel I know so little when they come up.

    Enjoy your meeting in Dallas.

    Amy

  19. To Amy, and Rabbi Ed,

    First, Amy, thank you for your thoughtful and honest reply.

    If my October posting is one you are interested in sharing, Rabbi Ed, please, please do. I just searched for CURE magazine [“Combining science with humanity, CURE makes cancer understandable” — maybe it wasn’t around when my husband was operated on, maybe he sees it at his doctor’s … I doubt it … but I never heard of it til now], but do oncologists, especially prostate cancer specialists and urologists read this? Patients need the straight scoop … to understand the impact on their lives, and their abilities. The surgeons or physicians making the cut, or writing the scripts, rarely have a clue. They see so many people/they are allowed so little time, etc. Some, we know, have seen too much mortality in the course of their practice and have lost some empathy.

    Do I regret my husband being alive the past 10 years, instead of, possibly, gone because of raging prostate cancer? Of course not. He has been here, with his growing/now grown family; he has achieved much in his chosen work, and he has found fulfillment in many things … without sex, without me (because he withdrew from me). He helps me with things, we visit the children, everyone thinks he is the World’s Greatest Guy (and he still is, just not in all the ways they think he is), but there is an invisible wall throughout the house … do not pass, do not touch.

    What we have here is a huge failure to communicate (sorry, taken from a movie), and … few physicians want to do it.

    When my husband was diagnosed, he knew nothing about prostate cancer. I knew immediately: impotence is the main side effect. We read about various prostate cancer treatments available when he was diagnosed. Books and pamphlets and three or four consultations and so much pressure because of his particular situation … we were told: Make your decision now. As if in another 5 minutes the cancer would metastasize and it would be our fault for dawdling, and then … the point of no return. This, all implied, was certain death.

    Shock … He could not have handled it, maybe, if someone had said:

    “This medicine/treatment/protocol/surgery is good for what we know ails you now, but the immediate side effects and those possible over the long term are practically unforgivable. But you won’t be seeing me by then, so I hope you don’t have problems with any of the side effects I am cleverly minimizing.
    And, of course, I sure am glad it has not happened to me because I would probably go crazy, and this is my field.”

    Thank you for giving me a space to vent.

  20. Dear Amy, Anna, and Rabbi Ed,

    Such a sad conversation. Rabbi Ed, feel free to use my comments, but this is not my real name.. Anna, how I wish I knew you! Your life sounds just like mine. I might add that there is another women’s forum (http://www.ladies-prostate-forum.org), but it is so depressing I can’t even go there anymore.

    I was in a traffic jam a couple of months ago, and there, next to me, in his very fancy Porsche, was my husband’s surgeon. First I wanted to ram my car into his. Then I wanted to roll down my window and yell, “You broke my husband you &$=+/! and you wrecked our lives.” Irrational? I suppose, but there’s the daily anger.

    I’m even angry at a doctor that was doing a fellowship with our surgeon. He was Muslim, and was literally incapable of looking at me, answering my questions, or addressing my concerns. I remember like it was yesterday him grinning while telling my husband, “You may never have a spontaneous erection again, but, don’t worry, there are lots of things we can do to help you.” If I ever run into that doctor I cannot be responsible for my actions.

    The last time I went to an appointment with my husband, in the waiting room was a young (50s) couple, him with his catheter bag, her looking worried … and it made me so sad I started to cry and I had to leave. I just wanted to yell at them, “They won’t tell you this, but you’ll never have sex again.”

    I asked his doctor about the book, Saving Your Sex Life … (which I was reading, but my husband wouldn’t) and he blew me off by suggesting the author was in the pockets of the pharmaceutical industry. His treatment included virtually no penile rehab, and my husband was 100% on board with everything that doctor said. I often wonder if he regrets that now. (Of course we don’t discuss it, we don’t discuss any of it. …)

    My husband was my best friend, a wonderful father, loyal, honest, hardworking. We always had mismatched libidos, but I’d be able fix things with us if the dry spell lasted too long. This I simply can’t fix. I have too much resentment, too much anger, and frankly, I just don’t know how. My husband shows zero interest in me. Anna — you speak of the “wall” — oh, how well I know it! I moved into a separate room about a year ago. (He had surgery 19 months ago.) I saw a lawyer in February, and proceedings are under way, although I am still at home. Thirty years is a long time to love someone, and the guilt I can’t even describe, but I truly feel that I need to save myself because I can’t save us. I’m fit, attractive, very active, and I am just so lonely it’s unbearable. Maybe I’ll never find someone else … I know that statistics aren’t on my side … but I can’t live like this. We planned such a nice retirement, travel, maybe a new patio home, grandkids, … all seem hopeless now. The divorce will be financially terrifying (especially for me).

    My husband just seems happy that the cancer is gone (so far anyway). I’m even angry that he isn’t angry about what it’s done to us, as a couple. I’m angry that he doesn’t seem to miss me, and that he has consistently not listened to my concerns (especially early on when I was giving them voice). Now that I am leaving him he is angry — very angry — and upset, but not upset enough to come to me and hold me, or anything.

    Sorry for the rambling, everyone. Anna, my heart breaks for you. Thank you Amy for this forum, and thank you Rabbi for caring about the lives of those involved with this awful cancer.

    *****

    Amy wanted to just add a few words …

    Clara:

    Please repeat after me … “This is not my fault. This is not my fault. This is not my ….” and do this regularly and often!

  21. Hi Amy,

    Thanks for your remarkable comments and insights. … It’s an enormous relief to know that I’m not alone out there.

    I’ve got a question that’s kind of, well, intimate. I’ve tried looking it up, and only get poor “porn” responses.

    I’ve fallen (quite unexpectedly) in love with a dear friend of more than 20 years, who had his prostate removed 3 years ago. So far, so good. We’re a great couple, and sex is honest and lovely. Although rarely penetrative. That’s okay with us.

    However, now his PSA levels are up, and he’s opting for radiation therapy. That’s okay, too — we’ve talked about side effects, and we’ll deal with what comes.

    My big question is … although he can’t ejaculate, he says he still has a form of orgasm. I’m struggling with exactly what that means, and what I can do for him to keep that. If he can’t maintain an erection, how can I keep stimulating him? What the hell is this “dry orgasm”?! He’s terrified of losing even that, and I’m scared too. I’ve read the comments from the women above, and I feel such empathy for everyone — I don’t want to lose the man I’ve spent 40 years figuring out that I adore. I’m worried that it was sexual attraction that got us to where we are, and that if he loses his libido completely, he’ll lose interest in me, too.

    When we first struck up a very close relationship (some months back), he was quite resolute about not going through with more treatment, given the side effects. He seemed fatalistic. He’s only 50, and couldn’t seem to face the possible impotence and incontinence. Then, as these things do, we became intimate and more — and it’s given him the spark to continue with treatment, and side effects be damned!

    I’m just frightened, I suppose. … What happens from here? What is radiation treatment going to do to him? How can I continue to be sexually intimate with the man I love, and is that even possible?

    Well, thanks for listening. Any advice is welcomed.

    G.

    *****

    Amy replied:

    Dear G.:

    So first let’s deal with the “dry orgasm” issue. Here’s a link that may help you to understand what’s going on.

    Second, even if your friend becomes unable to have a physical erection (they all do in the end you know … men, I mean), this does not necessarily stop him from experiencing orgasm. So you can stop worrying about that one!

    Which brings me to the key point. None of this is about “sex”. It is about the actual intimacy and the ways you find to give each other pleasure. As you have clearly discovered, what appeared to many of us to be the key issues when were were 18-20 years old should have long been bypassed by an understanding that intimacies come in 1,000 different forms. Of course you are frightened by the idea that what seems to have been working for you both might vanish overnight … but I don’t think it will, and even if it does, I will bet that you both have the imagination to come up with new forms of intimacy.

    Intimacy, like life, is a journey. It comes with exciting surprises and unexpected shocks and periods of routine sameness that need to be overcome! So I would suggest that rather than worry about what might go wrong (which is, of course, a very natural thing to worry about), you focus on how to expand the current levels of your intimacy, with a specific focus on things that will still be fun regardless of what happens after the radiation.

    Oh … and there is one thing that is not allowed. Neither of you is allowed to retreat into gloom and self-pity. The occasional bout of feeling sorry for oneself and sulking on the sofa is one thing. Making that a habit is where the line gets drawn. That habit is unacceptable for all concerned! Recommended treatments include severe tickling with the nearest feather duster and other things I shall leave to your imagination!

    Amy

  22. Hi Amy.

    I have read through all of the questions and answers posted. Not only am I now terrified, I am sooo sad.

    My 44-year-old husband was just diagnosed with early stage prostate cancer. The urologist said we could consider radiation seeds or prostatectomy and, being a surgeon, he would recommend prostatectomy. My husband has struggled with ED the last several years. He takes SSRIs and when we got tests back his testosterone level was 200; that and his prostate is enlarged to 36 grams. We were hoping the urologist visit would help us to fix the intimacy issues but now it looks like things are about to get much worse.

    If we elect the prostatectomy, are we pretty much guaranteed no sex life? Do we run the same risks with radiation seeds? I know some women are fine with “other things” but I have been living with half erections and sex maybe five times a year. We were looking for a cure for ED and now I feel lost and honestly angry at the prospect of not having sex again or for a year or more. I feel so selfish but we are still so young I am not ready to give this up and no, “other things” won’t cut it for me. Would you say more people that have had this procedure would say no don’t do it try something else like the radiation seeds? Am I overreacting and is the likelihood of him being fine a good percentage? If he has the prostatectomy, wouldn’t the removal of the enlarged prostate holding him back from erections now be gone? If he has that, really, how long till we could have good sex again? I know this is a lot but I am stressing out just a little.

    *****

    Amy replied:

    Dear Stephanie:

    Of course you are feeling lost and angry and “stressing out just a little”. Let’s see if we can clarify some of the issues.

    First, you are dealing with two quite different problems here: the ED and the prostate cancer. The most likely reason for the ED (a low testosterone level) may well not actually be connected to the reason for the prostate cancer. However, giving testosterone therapy to a man who has been diagnosed with prostate cancer is a very controversial subject (and there are arguments for and against this in specific types of patient but giving testosterone therapy to you husband at the moment is not something anyone would be likely to recommend).

    Second, responses to the various forms of treatment for prostate cancer are very individual for a whole variety of reasons. For example, younger men are much more likely to recover good sexual function after any type of treatment than older men, but — without some other form of treatment that is specific to your husband’s ED — treatment for the prostate cancer is almost certainly not going to improve his ED or his sexual function.

    So the two key factors here are going to be: (a) how to deal with your husband’s prostate cancer (which also depends on how aggressive his cancer is, and you haven’t mentioned any of that) and (b) what could be done after his prostate cancer treatment to optimize his ED/sexual function?

    I can’t lie to you about this. It is a really complex problem and there are no easy answers. What you both need more than anything else is some really good advice from an expert in male sexual function who also understands the implications of your husband’s diagnosis of prostate cancer. There are a rather small number of these specialists, and so a lot depends on where you live and whether you are able to identify someone who can help you. There are certainly, for example, such individuals in major centers on the East Coast like Boston and New York and Baltimore.

    The other thing that may be relevant here is the size (volume) of your husband’s prostate. If it weighs 36 g then it is about three times heavier than the average “normal” prostate, but when it comes to treating prostate cancer with radioactive seed implantation (brachytherapy), it is usual to make sure that the prostate has a volume of 45 cc or less, which seems unlikely in your husband’s case, and this has implications about whether brachytherapy is even a real possibility for your husband unless he was to have androgen deprivation therapy (ADT, also known as “hormone” therapy) beforehand to shrink his prostate … and that comes with another series of potential issues.

    I know you are feeling selfish in asking all the questions you are asking, but what you are actually being is realistic. By being able to ask these types of question, you are accepting and facing up to the truth about what is going on, and of course that isn’t an easy or comfortable thing to do … but it is not selfish. I can’t answer all your questions for you because, as I said at the beginning, responses to treatments for prostate cancer are so individual and your husband is relatively young. However, there is one thing that I can tell you: I do know of couples in whom the man had a penile implant after treatment for prostate cancer for whom this was extremely satisfying for all concerned. This is a radical solutioon to the problem … and I am not suggesting it is the only one by any means, but …

  23. I started my treatment on February 2013. My doctor put me on a shot every 4 months and a pill which I take every day called bicalutamide 50 mg. So far I have no side effects. In October 2013 I had my PSA taken and it was undetectable so my doctor told me that if the next time he sees me, in February 2014, the results are the same he will take me off the treatment.

    I am confused because I have heard that when you start hormone therapy you should be always on it (better results for the future) and on the other hand you should take breaks when your PSA is very, very low. As I stated above, my doctor wants to take me off the treatment if my PSA is undetectable. I told him my thoughts and he said, “I will take you off the the shot ” and then I told him how about the pills and he said “If you wish you can continue taking them … it is your decision”.

    So my question is, will I gain better results if i continue taking only the pill even though my PSA is undectable? So is “start and stop” hormone therapy as effective as continuous therapy?

    Thank you

    *****

    Dear Jimmy:

    I see that you have already asked the same question on the InfoLink social network, and that the sitemaster had responded to your question.

    I am sorry but I really can’t provide any better guidance than what the sitemaster has already offered you. There really is no “right” or “wrong” here.

    Amy

  24. My husband and I are in our late 50s and have been married for 8 months. He had prostate cancer surgery about 3 years ago. So, I never knew him as “normal”. There is an openness between us in companionship, and we connect spiritually, mentally, and are active socially. However, although, at first, he was attentive to me emotionally and physically, he is not so much now.

    We used to talk on the phone for hours and hours before we were married … we dated for about a year … and he communicates well when he wants to. When we got engaged, he said that we would work together on how best to make love once we were married … that he would go to the doctor and see what could be done. He has not pursued it.

    He’d told me that his erections are weak, which I found to be true, but he does have some response. He enjoys oral sex and is pleased with how I please him. But he tells me that he doesn’t necessarily have the desire and can go indefinitely without it. Although our frequency started off nominal, it has dwindled off even more. No matter what I do, he does not respond to me … and basically just sidesteps any talk of sex. If I bring it up lightheartedly to not pressure him, he still avoids it by just making a little joke about it. He has had some pain issues with his back and he blames the infrequency on that, although he is active in work projects that are physically demanding and will work even when he is in pain.

    I’m a giving, loving person and enjoy sex. He knows this but doesn’t seem concerned that I’ve got higher than normal desires even though he has almost none. It seemed at first that he was going to be attentive to me. Yet, it has been almost 2 months since he has even touched my body in a sexual area or way. He holds my hand and gives me kisses, but that’s all. It has caused tension because he will not talk about it. We had a “discussion” the other night that turned sour because I am so disillusioned about this wall I feel between us. Although we spend a lot of time together, he is constantly distracted with business e-mails or the dog or work around the house.

    I think, in his mind, we have “us” time, but to me, we do not. The lack of emotional intimacy and romance are harder to deal with than the lack of sex. I’m so confused because he tells me he loves me all the time. But I don’t see how we can build a marriage on such a limited scope. Before you suggest it, he would never consider counseling … He had tried it before and said that all he did was hear himself talk with no feedback from the counselor.

    *****

    Amy replied:

    Dear Debbie:

    You write that “There is an openness between us in companionship, and we connect spiritually, mentally, and are active socially.” However, it seems clear to me in the rest of your message that you and your husband are not, in fact, connecting mentally about something that is extremely important to you. He is either not hearing or not responding to your expressed need for greater intimacy.

    Without wishing to be disparaging, men tend not to experience the same level of need for intimacy as women, and so they tend not to recognize its importance to the women in their lives. They also tend to miss the distinctions between intimacy and sexual activity. (Not all forms of sexual activity are necessarily intimate, and not all forms of intimacy involve sexual activity at all.)

    What you seem to be missing (if I am hearing you correctly) is his simple attention. He made time to give this to you when you were courting, but now that he has “caught” you, he doesn’t recognize that he needs to maintain the process of constant re-courting in order to keep the sparks flying.

    There is, of course, no simple solution to the underlying difficulty unless the pair of you can find a way to get past this problem. It is a communication problem that is affecting your ability to “couple well” emotionally and also physically. He is sending a message that he “isn’t interested”. He may be receiving a message that you are “demanding.” And probably neither of you intend to send these messages to the other. It so easily becomes a vicious cycle.

    So what to do?

    You both need to to start “dating” again. With each other. You need date nights. You need to go dancing or to go to the movies or do together whatever it is you like to do in common. You need to be able to flirt with each other. He needs to walk away from his work projects every so often and give you his undivided attention. You need to find ways to make him want to do that — and those ways very likely don’t necessarily involve sex — although ideally they will lead to a recognition on his part that sexual gratification is important for you.

    Is any of this helping?

    Amy

  25. Dear Amy,

    My father recently let us know that he has prostate cancer. It is Stage 1 and his prognosis is very good according to his doctor. He has decided to have his prostate removed, which, according to my mom, is the best option for him.

    Can you please give me advise on things I can do for my dad to keep his spirits up and remain positive? I don’t know what to expect and I am trying to stay positive myself. Of course my initial reaction when he told me was of shock and high emotion. Now that I have processed the news I want to give him the best possible support. Unfortunately, I live in another state than he does but I want to send him care packages. Also, do you know how long after his treatment will he be able to resume his normal activity?

    Thank you,

    C

    *****

    Amy replied:

    Dear C:

    Thank you for the excuse to stop cooking for 10 minutes! It never seems to stop at this time of year!

    So it is very hard for anyone to tell you things like “how long after his treatment will he be able to resume his normal activity.” Why? Because this will depend on a whole bunch of details, including, for example, the precise nature of his cancer; his own personal anatomical details (big prostate or small prostate; narrow hips or wide hips; etc.); his age and general physical health; the skill and experience of his surgeon; and more. However, what I can tell you is that most men do just fine; that they recover relatively quickly from the surgery today; and that complications are generally a lot less serious and a lot less common than they were 20 years ago.

    With regard to dealing with your Dad and the care packages, etc., my suggestion to you is that you let him “call the shots”. He and your Mom appear to feel that they have this under control, and your Dad (like most males) is probably going to want to just “get it done and move on”, so you need to be cautious about over-communicating about all this. You might do better to see if you can “set him a goal” without making it too obvious. For example, if he knew that you and any grandkids might be coming to see him in about 3 months time after the surgery, then he would (presumably) be highly motivated to make sure he was well recovered by then, and in the meantime you could simply ask your Mom if there was anything she needed help with and ask your Dad how he was doing, without making too much of a big deal about it.

    If your Dad has Stage I disease, he is generally in good health, and he has a good surgeon, he should do fine, especially if he has a positive attitude to life. The best help you can probably give him is your complete confidence that everything will be fine, and that you expect him to be back to doing all the things he normally does within a few weeks after his surgery.

    Amy

  26. My husband had prostate surgery in 2008. The urologist told us that he had spared the nerves, and after about 2 months we did have intercourse, although my husband was very aware of the length his penis having been shortened.

    Since that point in time, he is very self-conscious of urine leakage during any sexual activity. I think he is frustrated, and no matter what I say or do he is private about this and we are now celibate and have been for about 4 years.

    We have been married since I was 18 and he was 21, we are both in our 60s. I love my husband, he is my best friend and I wanted him alive, first and foremost. I expected sex wouldn’t matter as long as I have him and, truthfully, if that is how it has to be, I can live with that. But, I am so lonely, he has just emotionally abandoned me. He sleeps in a different room cause his back hurts, he watches TV half the night till he falls asleep. I work all week, so I am gone all day; he is on disability for his back and other issues, but he is never still. He builds, cleans, cooks, etc. He has dinner for me every night, whether I want it or not.

    I know he is trying to make up for what he thinks are his shortcomings, and I get that, but I would just love to have him hold me in his arms and cuddle or kiss. There are other sexual things to be done, but he has just totally turned his back on any of it. I think he feels that a man without a functioning penis is useless to the world.

    I feel bad for him, but I can’t seem to make him understand that that isn’t all there is. He just shuts me down, and I truly feel lost without him. I want my husband back emotionally. I would never cheat on my husband; I know he had a big fear of that when this first surfaced, but that isn’t my style. However, I need someone to hold and hug and kiss me, not just go about life as if we are roommates. Does anyone have any suggestions? One time he mentioned the pump, but if he isn’t going to have any sensation from it, I don’t want him to undergo any more surgery. He tried the vacuun but said that was too painful. The pills don’t do a lot. I think the “use it or lose it” factor may have been true, but I guess he is past the “lose it” option.

    *****

    Amy replied:

    Dear Debbie:

    I so often hear of stories like yours, in which the man seems to associate everything about his masculinity with the ability to have sex as though he is still 20 years old, and he utterly ignores and negates the importance of forms of intimacy that have far more to do with empathy, touch, conversation, and shared activities other than sex.

    At the end of the day, this is all about honesty in communication between the partners and about mutual understanding for each others’ needs and “happiness factors” and a determination to meet those needs. Obviously, no one else is going to be able to make that “happen” for you and your husband, but maybe I can tell you some things that may be important.

    First, I suspect that your husband may be suppressing enormous anger about all of this … and for all I know, you may be too! When I was younger, and I was angry, I used to have those old, cheap, orange pottery flowerpots everyone used to use, and I would take half a dozen out and throw them really hard against a brick wall so that they broke in an enormously satisfying manner! And I would tell anyone who saw or heard me doing it exactly what I was angry about. I haven’t had to do this much recently … but I still have some of those flowerpots out in the garage, just in case! Maybe you and your husband need to do something like that together! Many of us aren’t too good at sharing our anger with others and so we suppress it to the point and which it becomes truly destructive,

    Second, you are obviously both trying really hard to please each other by substituting “doing things” for honesty. I am no psychiatrist or psychologist, but I know enough to know that this is only a “temporary fix”, and you clearly recognize this too, but maybe your husband can’t see that yet. I’m not sure what to do about that … but “something” does need to be done.

    Third, I think you and your husband need to start “dating” again. You need to go on “date nights”. You need to find something you’d both like to try doing and go do it. You need to “break the routine” so that you can find new things to share and enjoy together and laugh about together, so that the intimacy can come back into your marriage without having to be associated only with sex.

    Finally, maybe you need to just go into your husband’s room one night and ask him to turn down the TV a little so that you can sleep, but tell him that you just don’t like sleeping alone ‘cos you like to be near to him. It may take a little adaptation on the part of all concerned, but it may also be worth the effort.

    Amy

  27. Dear Amy,

    I hear myself in so many of these comments. I am also full of anger. If I had known about prostate cancer, I would never have married any man. I wouldn’t have allowed myself to love one because what I have left hurts too much.

    My husband was 42 when he was diagnosed with Stage II prostate cancer; his PSA was 4.2. The doctors immediately sold him on a robot-assisted laparoscopic prostatectomy. They made it sound like he would be back to his old self in a few short weeks. A cakewalk they said. Don’t believe them. They lie.

    I did months of research prior to surgery and even talked with the doctor about watchful waiting but his mind was made up. When he told me the surgery date I began to shake. Never had I felt such out of control rage. I wanted to kill that surgeon. (Still do.) I knew surgery was wrong. KNEW IT!

    My research was to no avail. My husband had really made up his mind within minutes of hearing the doctor’s sales pitch. I pulled myself together and tried to support him. I was wrong. I should have fought, but in the end it’s his decision to make; we are just along for the ride.

    The day of the surgery was the last time I ever saw the man I once thought I knew so well. That was 19 months ago

    BTW … None of the drugs worked; the pump was painful. (They only gave him about a 50% erection.) The shots worked but freaked him out. He did it once and did achieve a 100% erection that lasted about an hour. (Which can be adjusted.) That was a couple months ago. At the time I was just happy the shot worked and I thought we would work through his needle phobia. That hasn’t happened.

    I asked if he still has desire and sensation. He says yes, but he does nothing about it. At least, not with me.

    He also goes to the gym and has tons of hobbies. I tried to fill the loneliness with hobbies but it didn’t work. I have tons of half-finished projects that just remind me of the quality of life lost. I can’t say “we” because he seems OK with what is left.

    When we go to bed he puts on earphones and watches videos about whatever the hobby of the day is on Youtube. I pretend to watch TV. Every time he opens his tablet I want to cry. … I have cried. He never noticed.

    He went from someone that was always touching me, hugging me, holding my hand, etc., to a stranger that avoids me. I haven’t complained. I’ve told him we will work it out. In retrospect I should be screaming.

    We married young and both our children are now away at college. I was a stay at home Mom. My life was my family. Now, I have no one. I’m alone always. Even if he’s here. I feel invisible.

    Men are so stupid. STUPID! It’s not about the sex. How many times do we have to say it?

    I don’t even care about the sex as much as the hugs and hand-holding and him just talking to me.

    I think I was sentenced to solitary confinement for life.

    Newly diagnosed … Beware doctors; they have money to make and fancy toys to finance.

    Yes, I’m bitter.

    *****

    Amy replied:

    Dear Caty:

    Of course you are angry, and of course you are bitter. … I am so sorry. … I hear every word you are saying. … I wish, … how I wish … that I had something — anything — really intelligent to say in response.

    Amy

  28. Caty,

    You just broke my heart. So many of us partners of prostate cancer victims either are living that, or were living that but left.

    I have no helpful advice. It sucks. Eventually you will decide to either sacrifice yourself or give up everything you’ve known. The worst part is that all the burden of that decision will fall on you, no one will be able to relieve any of it.

    A million hugs to you honey.

  29. Caty,

    I’m a wife of a 45-year-old who was diagnosed with prostate cancer a year ago. I’m dealing with the same heart-break as you.

    My husband underwent the same surgery and after the 6-month waiting period he started taking shots for an erection. They worked very well; too well! He would have an erection for 4 hours at times, no matter how he adjusted the shots. As a result, he got scar tissue on his shaft. The doctor insisted on an implant and said that at the same time he would clean out the tartar. After another long waiting period, we tried having intercourse. It was a total failure and has formed an invisible wall between us. This has taken a toll on our emotions. We love each other deeply and are best friends, but I’m like you. Wives are the forgotten factor in the problem of prostate cancer. We need a support group.

    *****

    Amy replied:

    Dear Becky (and Caty and others):

    There is an organization specifically for wives, partners, daughters of prostate cancer patients called “Women Against Prostate Cancer“. And it does have local chapters in some states.

  30. I noticed that my husband’s penis has shrank. I kept telling him whenever we made love but he kept ignoring me. … I noticed he spend much time in the living room and come to bed late when I am fast asleep likewise before when we both go to bed together. Then 2 months later he told me he has prostate problem. I said to him jokingly, “Did you have an affair?” because he said when he urinates is very painful. He is currently talking some antibiotics; he had a scan.

    So does it mean we no longer can have sex? Or our marriage is over?

    *****

    Amy replied as follows:

    Dear Ma:

    I suspect that your husband is upset and very worried. It is not entirely clear what his problem is from what you have told me. He might have an infection of some type (and that does not necessarily mean that it is a sexually transmitted one). Or he might simply have an enlarged prostate, which is giving him problems with urination. If he is over 50, the second possibility is very common.

    I also think you and your husband need to talk about this problem so that you both understand what is going on. Why? Because the problem is already affecting both of your sex lives and you need to have a shared appreciation of exactly what the problem is, what can be done about it, and how serious it is.

    Is your sex life over? I can’t answer that question. It depends on all sorts of things, including exactly what the problem is and whether it is curable. What I can tell you, however, is that failure to be able to communicate honestly with each other about a problem like this can have very real effects on marital relationships, … and men have a very hard time talking about health issues that affect their sexual capabilities. Your husband probably needs your help.

    Amy

  31. Dear Amy:

    I have been dating a man for about 15 months. He proposed after 9 months. I accepted. This month he was having severe back pain and needed to go see a doctor. I suggested a spine specialist as I do not believe in messing around and to get to a specialist. He went after a lot of convincing. They took an MRI and yes he has prostate cancer. It is level 4 (PSA of 266) and is attached to his pelvis, lumbar region, spine, both femurs, shoulder, and there is a mass on his kidney. This has all been confirmed with a CT scan, a PET scan, and a biopsy of the prostate. He admitted to me and the doctor that he suspected there was something wrong for the past 10 years! Yes, 10 years! I feel deceived. I feel that if he “suspected” something was wrong he should have got it checked out before dating someone, let alone proposing marriage. Am I crazy for feeling this way? I do not think I can trust him, and I have called the wedding off.

    *****

    Amy replied:

    Dear Judi:

    Are you crazy for feeling the way you do? No. Your reaction may be a little extreme, but it isn’t crazy. You were deceived, although I very much doubt that it was deliberate. Men just tend to ignore health issues until something really serious happens. They are male after all!

    I suppose the only other important question here is how you are going to feel after you have had the chance to get over the initial reaction. Are you just going to be able to walk away, or do you still love him in spite of the stupidity of not having addressed a health problem that was more serious than had ever occurred to him? You don’t have to marry him. And since he is probably already on some form of androgen deprivation therapy, you can forget about a normal sex life. But seriously, can you just walk away?

  32. Hi Amy.

    I agree with your assessment of Judi’s fiance, who was on a self-denial kick until push came to pain. However I can’t help but wonder why you stated that “since he is probably already on some form of androgen deprivation therapy, you can forget about a normal sex life.”

    I sincerely doubt that any of us prostate patients or survivors who have been through androgen therapy should “forget about a normal sex life.” Speaking as a prostate cancer survivor, and as an AASECT-Certified Sexuality Counselor and Intimacy Coach, I need to remind fellow survivors and their spouses that it’s up to us to develop a “new normal”. I’m convinced we can do so by redefining what we mean by “a normal sex life” and what we mean by “sex” itself.

    I have some specific ideas, including those in my Kindle book, Reigniting Intimacy and Sexuality after You’re Ill. This, includes the notion that sexuality need not goal-oriented with undue emphasis stress on male and female orgasm.

    Thanks in response to you.

    *****

    Amy responded:

    Dear Rabbi Ed:

    In no way did I intend to deny the possibility of a “new normal” when it comes to one’s sex life for those who have been able to accept and adapted to the realities of ADT. However, in Judi’s case, based on what she is clearly experiencing, what I had carefully stated was that the she could forget the idea of a normal sex life — something that a recently engaged couple, shortly to be married, might have expected during a honeymoon period and for a significant period of time thereafter. Before anything else is going to happen, Judi and her fiance will need to find a way to get through the acceptance and adaptation phases (if that is going to be possible for them).

    Amy

  33. No, I am not walking away; I will still be here for him. We have not had sex by the way; we were waiting for marriage before that occurred. So I suspect there just will be no sex, period.

    *****

    Amy replied:

    Dear Judi:

    I think the important thing is going to be for you both to take one day at a time for a while. You have both been given serious shocks to the system: him medically; you emotionally. It is going to take a while for you both to decide where you want to be as you work your ways through this.

    Amy

  34. Dear Amy,

    My husband had prostate surgery 2 years ago. He was left incontinent and impotent. With support from his doctor he was able to use injections to help his impotence some and we were able to have sex, but it was not easy. In March he was told that his PSA was rising (to 0.4 ng/ml) as he now has a recurrence.

    Due to all his side effects, he has made the decision to do nothing more for treatment. Although this has been difficult for me, I understand it is his body and his choice. Since then he has distanced himself. He just revealed to me that he has been unhappy in our marriage, that he has been living my life, and things are going to be different. He said I may not like it and I may want to divorce him but he doesn’t want to divorce me yet. We had established plans for our future. He retired in August and moved to Florida in October to find a place for us to live during the winter. I needed to finish another year of work so I have been up north, retiring as of June, and I have sold my home and planned to join him in Florida this October. We have a summer place here and planned to spend summers here. He had said we will have no sex and now claims our sex was never good. He never communicated this before and up until March he expressed his love and affection to me at all times. I visited him twice over the year in Florida and he was here several times. There were no signs of his discontent in our marriage. The carpet has been yanked from under me. He still acts like my friend, but unless I reach out to him there is no communication. On one occasion he told me he loved me. He is returning north in 2 weeks because he wants to come help me move from this home and to go to my retirement dinner and a wedding we have. Is this a protective mechanism he is using? Is this a form of depression? I feel so helpless because I don’t really know if I can live with this rejection. I plan to fight through this as long as I can. I was wondering if you had any advice or knew of anyone who has lived through a similar situation.

    Thanks

    Dotty

    *****

    Amy’s response:

    Dear Dotty:

    Men can be very odd, and I am not sure that I have anything very intelligent to offer in response to this set of events.

    The sense that I am getting from what you have told us above is that your husband seems to feel he has failed to achieve what he has always seen as certain goals in his life. … Whether these goals were ever reasonable or achievable or not is a whole other question.

    When one feels like that (rightly or wrongly) one has a tendency to ascribe a certain amount of the responsibility for the consequences to others. For example, your husband’s statement that “sex was never good” between you seems to ignore the fact that he may be the responsible party for that problem. (I’m not saying that either of you actually is the responsible party, but if it never came up before, how was anyone meant to know? And for all I know, you may think he wasn’t that good at sex anyway, but you are too much of a lady to say so!)

    It does seem very likely to me that the combination of his retirement, the prostate cancer, and the recurrence has driven him to think that if he does want to meet some of those other goals in his life, then he has to go and just do whatever it is he wants to do. And he doesn’t want you to get in the way. Why he needs to make you feel guilty about it too, I am not sure. He may think that he needs to “explain” in some way. However, sometimes the explanations are more like justifications … and not very good ones at that.

    It also seems very clear to me that your husband is very torn about what he is doing. On the one hand he is telling you that he wants to make significant changes in his life; and he clearly appreciates that this will have significant impact on your life. On the other hand, he seems to want your approval and your blessing in an odd sort of way.

    Frankly, I think you are entitled to be furious with him and find a good lawyer to make sure you get every penny you can out of a divorce settlement. If he hasn’t been living the life he wants to live now, and hasn’t had the guts in the past to talk to you about the fact that, from his perspective, he had been “living your life”, that’s not your fault. That’s his. Why on Earth he should think that you would be happy to accommodate this, I cannot imagine.

    I don’t think you need to necessarily become bitter and “bitchy” to him about all this. However, my concern would be that unless you start to deal with this problem now, what will happen is that you will cede to him a lot of your joint property, leaving yourself with no husband and nothing like the resources you were hoping to retire on, while he continues to see you as some sort of “friend”. (You won’t feel that about him if this happens!)

    I know that at the moment you feel misled and betrayed and all the other things that happen to women when men suddenly pull this sort of stunt. However, the bottom line here is that he isn’t being completely honest with you. If he was being completely honest with you, he would have told you that he just needed to do something completely different with the rest of his life, and to do that he needed to make sure first that you were going to have what you needed to live the rest of your life in the way that you had reasonably expected.

    However good looking, charming, friendly, and everything else he may have been for the past 30+ years, it is clear to me that he is walking out on you (at least mentally). You are going to need to accept that and move on with the rest of your life. But you need to make very sure that you will have the resources to do that in the manner to which you have very reasonably become accustomed. I don’t see this as a “rescueable” situation, and if it isn’t rescueable, then one needs to cut through the Gordian knot as fast as possible and find ways to make very sure that you can enjoy the rest of your life by doing what you want to do with it. So … Ask yourself this: If you don’t have to spend the next 20 years watching your current husband do a whole bunch of the things that already annoy you about him, as well as some new ones you don’t know about yet, then what are some of the things that you would really like to do instead? Do you really even want to move to Florida at all?

    Not very helpfully

    Amy

  35. My husband has prostate cancer and is sulking as he has ED. It doesn’t bother me as I have had the menopause, but he keeps on about having sex — which is a waste of time and effort as he can’t keep a erection for long enough.

    I really don’t care. We have been married for 35 years. I just want him to fight the cancer and all he cares about is sex. He is 61 and I am 59. He is going to have radiation treatment. Which one is the worst as regards ED and for taking all the cancer away? He is a big man of 18 stone (250 lb), and he smokes, drinks, and eats too much. It’s like he doesn’t care and I’m so fed up right now.

    Sorry to vent … He doesn’t even think about me; won’t even talk. I live in the other room. He has no hobbies or work — although he did work from age 15 to 60.

    Sylvie

    *****

    Amy replied:

    Dear Sylvie:

    I feel for you. Your husband is living in a self-deluded world — one in which he is still phenomenally handsome and attractive to all women and his sexual prowess is unreproachable! Alas, neither of these appears to be entirely true, and he isn’t even trying to do much to foster the illusion very effectively!

    What does one do in these circumstances? Well, ideally one just laughs at him and tells him that he hasn’t been coming across as Casanova in quite a while now, and that his sexual prowess leaves a lot (everything?) to be desired. Of course when one is dealing with a male who has no capacity to laugh at himself, this can be a risky strategy … particularly if there is any history of abusive behavior.

    The best way to treat his cancer depends on how aggressive it is. If it is really aggressive then surgery is usually wisest (and then he really would have a high likelihood of lifelong ED). On the other hand, if it is less aggressive, radiation therapy is perfectly reasonable, and it will increase his ED over time, but not immediately.

    The real problem here, however, is not the ED or the cancer. It is that your husband has stopped working and has no external motivation to do anything to make himself interesting and helpful to others. What did he think he was going to do when he retired, sit around the house while you waited on him hand and foot for the next 20 years? Can’t he apply the skills he acquired over the past 45 years to help others? He doesn’t have to do that 40 hours a week, but it would help him to get his butt off the sofa and outta the house! The hardest thing for many men to do once they retire is actually to discover what to do with all that time they now have on their hands: it’s time he could use to help others less fortunate than he is.

  36. Greetings Amy;

    How do you learn to live without sex and very little touch?

    My husband is 68 and I am 55; he is a wonderful man whom I love very much and we want to continue living our lives together. We have been together for 12 years, which began with us both having similar sexual needs. About 6 years ago he started losing the ability to stay erect as long and sex went down to once a week to once a month in a 2-year span; the following 3 years it went to once a year. During this time I was trying to be supportive and to let him know I still love him, but I wished he would go to the doctor to see what was creating the issue, with him always saying “Sometime soon.”

    At this point, one morning, I was getting ready to go to town he stated his loving statement he said each time I went to town” “Hey Chick, you’re getting all sexed up. You’re not taking your love to town are you?”

    This time my response was different, I just sat down and started crying and told him that no I wasn’t, but I think about it because I miss sex so much and that I was so angry at him for thinking I was not worth enough to him to find out what was wrong. I still have the image of his face when I said that to him. When I got home he had made a doctor’s appointment and 2 months after that he was having robotic surgery to remove his prostate.

    It has now been 18 months and he takes Viagra every day without any difference. He also has a pump that he has never gotten out to try with me. He has tried it when I am not home and he said he doesn’t like it. I asked him if he would consider getting an implant and he told me that as long as he is having urine leakage he doesn’t want sex of any kind. I told him if doesn’t want sex I understand, but that I need sexual touch still — even if he just one gave me one orgasm any way he wanted maybe once a week. His response is he understands, he will work on it, and his famous last word I have begun to hate — “Sometime soon”.

    Since the surgery it is not just sex that is non-existent. He was never a much of a touch person, but now we have no touch and none of our fun sexually commits. I feel like a piece of me is dying. I do okay for a while and then I get so sad. I give myself an orgasm all the time in the tub and I used to invite only my husband to my vision images. Now I never invite him into my tub (in my head) I envision other people. It is taking every piece of my strength have not to have a sexual affair.

    If it wasn’t for the fact that I am a Christian, I almost did last week. I feel so incredibility wretched, I couldn’t even take communion last Sunday. It was not because I haven’t been praying to God for help and to keep me strong; it was because I couldn’t totally give it to God because what if the answer meant I may never have sex again in my whole life.

    We have a good life together. We like the same things; we have a business together; we have horses that we both enjoy; and even though we are both in a second marriage our children have blended well and have given us grandchildren that we love so much. So, back to my question: How do you learn to live without sex and very little touch?

    Thank you,

    Jan

    *****

    Amy replied:

    Dear Jan:

    This is going to be really horrible to have to say, but the answer to your question (at least from my point of view) is, “You don’t. You only learn how to endure it. And it’s very, very hard.”

    If your husband was losing his erectile and sexual capabilities before his radical prostatectomy, there was never really going to be much chance that he would be able to recover them after the surgery. However, that is no excuse for the lack of closeness and sexual touch and understanding of your needs. I have no idea why this is so hard for so many men to understand, but apparently it is.

    We are all, of course, very different in our sexual needs. Some couples are able to talk about all of this and work out ways to keep everyone happy. Other couples seem to be unable to talk about any of this, and you only have to read back through some of the other questions and comments I have received in the past to see the consequences. You and your husband seem to be stuck somewhere in the middle: you can talk about it when it gets stressful enough, but he doesn’t seem to be willing or able to actually do anything about it.

    I can understand that the Viagra may not work for him. I can understand his dislike of the pump. I can understand that he is less than enthusiastic about a penile implant. I can’t understand why he doesn’t know how to whisper sweet nothings into your ear while helping you to have gratification. That shouldn’t be so hard. Especially since you have clearly told him you’d appreciate that.

    Maybe the next time he pulls the “Sometime soon” stunt, you need to be more assertive and simply say, “No. Not sometime soon. Sometime now!” And then take him upstairs to the shower or the bath or the bedroom or wherever and grin broadly and say, “Come on big boy. Give me an orgasm. And make it a good one, Please!” He does seem to be able to “get the message” when you are blunt enough about it.

    And then there is the other half of the equation. Do you know if he is still able to have an orgasm — even if he can’t get a good erection any more? Maybe you need to ask him … and then help him to have one. After all — fair’s fair!

  37. Dear Amy;

    I have tried the “Sometime now”. It doesn’t work so well; then I feel completely rejected. I even tried “Don’t do anything at all, just watch” (which use to be his big turn-on) and he just closed his eyes and fell asleep, which left me going to my tub where anything I think or do feels safe. The only thing that has worked on that note is I jumped on top of him when wasn’t expecting it and let him know I was borrowing his leg for a while. He started to stop me and I let him know he couldn’t have his leg back until I was finished. That ended on a good note ….

    I would give him all the time in the world to take care of any of his wants or needs and he knows that; he doesn’t want me to touch him anymore. He used to love for me to give him a body massage and doesn’t even want me to do that now.

    He says he cannot get any erection at all unless he uses the pump. He was able to have an orgasm; however, urine came out and he can’t get past that. He has bladder control to a point, but he has a non-stop, constant drip which depresses him. He still gets up 4 or 5 times a night to use the bathroom, so he is never fully rested.

    Jan

    *****

    Amy replied:

    Dear Jan:

    It sounds to me as though the basic problem here is two things: (a) the failure to recover good continence after surgery (which he ought to be able to accomplish with the help of a good physiotherapist who specializes in continence problems, and (b) depression, which is a consequence of tiredness as a result of his poor sleep.

    He has clearly lost his sense of humor … but then depression and lack of sleep (combined with a sense of sexual inadequacy) is likely to do that to anyone.

    If you could find a way to persuade him and help him to do something about the continence problem, then he might be able to get over the related tiredness and depression. I’m not suggesting that he’s ever going to become Lothario again, but if you could help him to get a sense of humor back, he might at least be able to laugh with you again (at himself and with you).

    Amy

  38. Hi Amy,

    I feel a glimmer of hope in finding this site and your answers page here.

    I’ll try to be brief.

    My husband was 46 when he was diagnosed with prostate cancer. This was 25 years ago. He had a radical prostatectomy in 1989. We were married 2.5 months later. I was 24 years old.

    I really didn’t know what I was getting into. I had no clue what the consequences of the surgery would be, but one side effect was clear: impotence. He was really worried about this, naturally, and I was concerned.

    About 2 years after the surgery, his PSA was going up again and they recommended radiation treatment. We agonized over the decision because it was made clear that the radiation would likely negatively affect his ability to get an erection. He went ahead with the radiation.

    Ever since, it has been a battle. We have had hours-long sessions where we carve out time for each other and he struggles to get an erection hard enough for sex. When Viagra came out, I thought it was the end to our issues. We tried it numerous times, but he said he didn’t like to take something systemically. It was stuffing up his nose as well. ;)

    I went through a bout of depression (still have issues there) that I’m sure were from dealing with all of this alone — can’t really talk to your friends about this! I saw a therapist who told me about Muse. Well, we used that satisfactorily numerous times, but he didn’t like having to insert it. It’s expensive too … so that one got checked off the list.

    About 8 years ago, his urologist (who he does not see regularly) told him about a pump. We had tried them way back when they were not as good. He practiced with it a lot but then was irritated that the rings you have to buy are so expensive.

    I feel like I have been the one trying to find a solution and I hear him coming up with excuses or objections to every solution.

    At the same time, I’ve realized that he is sarcastic often and some of his behavior I see as controlling. He says he’s always been sarcastic. I say that a lot of the things he says are meant to hurt me and that he has a lot of anger over the situation.

    I realize that I have shut down my sexual feelings. I also feel hurt a lot by things he says or the way he says things. Five years ago, after he made an advance and I wasn’t in the mood, he made a comment to me that I was going to have to let him go see a prostitute if I wouldn’t have sex with him because he needed it. Ouch — to say the least! It wasn’t just a flippant, one-time comment. He kept talking about it. He even made me an appointment with the nurse practitioner at his urologist’s office. I went, but I’m not sure why. I was really at a low point then, dealing with his comment. I guess maybe there was supposed to be something wrong with me, but I told her there wasn’t — not physically.

    I have really shut down emotionally since then. I felt like our marriage was over. We agreed to go to marriage counseling, but I don’t feel it addressed the real issues. The therapist just instructed us on how to set aside time for each other, to let the positive feelings have time to develop, with no pressure to have sex. I think it’s a good idea. We had a little success with it.

    Not much has changed since. I have been dealing with feeling down, trying to deal with his biting remarks and his instructing me frequently on the “right way” to do things, say things. I’m getting older so I’m pretty weary of these types of things. I started seeing the same therapist a few months ago and he has gone with me once. But what happens is he has a logical explanation for all his behavior. It always seems like I’m the one with the problem or who needs to think differently and not be so negative. I’m not sure the therapist is seeing the big picture. It doesn’t help that I’ve worked from home for years. My isolation and not having a larger support group, not getting out of the house (he’s been retired for years) does not help, I’m finally realizing.

    All of this has been so difficult. I’m not sure if our sex life can ever be normal. I realize there are a lot of different factors that have affected our relationship. It has been hard. I’m getting older and getting tired. …

    I’m not sure if I have a specific question for you. It has been good just for me to type all of this out. :) I think there is unaddressed anger in our marriage. We can resolve things for a while and be sexual, but then the pattern starts again with his comments, and my shutting down/getting angry, etc. The issue is bigger than just the fact that I don’t feel like having sex any more. If you have any comments or suggestions I would genuinely appreciate them.

    I wanted this to be shorter. :)

    Best to you!

    Lilly

    *****

    Amy responded:

    Dear Lilly:

    You are right. There is clearly and “unaddressed anger” factor in your marriage. Whether it is really addressable is a whole different matter.

    As happens in the vast majority of long-term relationships, certain types of behavior become systematic under certain types of circumstance. When those behaviors are used to “cope” (however poorly) with unsatisfactory aspects of the relationship, then the behaviors themselves become part of the problem. I’m no psychologist, but that sounds like what has happened to you and your husband.

    I also have to say that I suspect it is extraordinarily difficult for even the very best counselors to be able to help couples get over this type of situation unless you are both prepared to really let go and “cry together” about what you never really had and have therefore lost. It’s the only way I know that you might be able to regain a mutual empathy for each others’ distress.

    Yes, your husband’s demeanor and language are obviously selfish, aggravating, and distressing, and he could be doing a better job of seeing this from your perspective. But clearly you are also pretty much “at the end of your rope” as well, which is why you have “shut down” to a large extent.

    I have no magic solution to this problem. The one thing that I would say is that you and your husband seem to have worked really had at this together over a very long period of time — even though you haven’t found a satisfactory solution. You wouldn’t have done this if you hadn’t had some deep underlying feelings and respect for each other.

    Do you know if he has ever talked to a doctor about getting a penile implant? Some men of my acquaintance (and their wives/partners) have had great success with modern forms of such implant. The problem is that usually such surgery isn’t covered by insurance. However, it is a relatively small cost to save a marriage.

    Amy

  39. Even after my long post, I forgot to mention the other problem: incontinence. It has gotten progressively worse as he ages. He could not function without men’s guards. I know that has been extremely difficult for him. Me as well, I guess, because I have to deal with his losing his temper over it and sometimes it’s not very conducive to feeling romantic I guess.

    Amy responded:

    Well, that certainly can’t be helping … and it is just one more place where your mutual reactions to the situation are at complete odds to your feelings for each other. He’s just frustrated because it all makes him feel helpless. You’re frustrated because he gets angry and, as you say, it is hardly conducive to a romantic atmosphere!

    The fundamental question here, as far as I can tell, is being framed in the context of “What is he (or she from his perspective) going to do about his (or her) beahavior?” However, I suspect that the real question is “What can we both do together to make each other laugh more?” If you were able to laugh together about some of this, then maybe the anger would die back and your could find a whole series of other ways to make each other happier. And if you could combine that with a penile implant (which, by its very nature, does come with a humorous side to it), who knows what might be achieved!

  40. Thanks for your quick reply Amy.

    No, he has never talked to doctor about getting a penile implant. I doubt that he would even consider it. I think the last thing he would consider, at this point in life, is more surgery.

    There are anger issues. He doesn’t admit he’s angry, but it comes out in his comments. Also, someone who isn’t angry doesn’t suddenly yell in frustration or get irritated so easily by small things like he does.

    My anger comes from the fact that I feel I am the one who has done all the work. I’m the one who has seen a individual therapist to work through feelings. I’m the one who suggested a marriage therapist years ago, and this current time as well. But when we get there, he has an explanation for everything. Instead of working out the anger and issues, he thinks going to therapy is some sort of magic thing to fix me so we’ll have sex again. Since it didn’t have that desired effect last time we went, he says I tricked him.

    You see, I’m dealing with some very hurtful words. I’m trying to maintain myself, my self-esteem, but it is difficult. So much of it gets framed as if I have problems or they are my issues. I maintain it takes two. His condescending words, his parental or lecturing type way of talking to me sometimes just doesn’t help.

    I, like you, think it is going to be extremely difficult for a therapist to really help with this. It has been going on for some time. It isn’t as easy as the therapist makes it seem. I realize now that we should have had counseling a long, long time ago. We have had to deal with this ourselves. He never reached out much to a urologist or any support groups. I don’t think men tend to do that much anyway.

    I like your comment about asking what we can do to laugh more. We do have some fun times, and I have made it a goal to get out more and do more social things with other people. That helps.

    I am more than happy to just put all the sex stuff aside, so it doesn’t feel like the elephant in the room all the time, and just put focus elsewhere. However…and this is a big however…he will frequently then make snide, sexual innuendo type comments or puns. Sometimes they’re in normal voice, sometimes not. But they hurt too. They’re like little digs and reminders to me that things aren’t right.

    I’ve been good to him. I feel I’ve been patient with all of this…yet this is the thanks I get?! It just hurts.

    The ambivalence I feel is difficult. On one hand, I know he’s a good person. I feel sorry for him. On the other…how long do you have to deal with this. I feel like I’m tired, I’m out of energy. I just want to be happy.

    I need to take all of this into the therapist I guess. I truly do feel that I’m at the end of my rope because no matter how I address these things, it doesn’t work. I have seriously considered leaving numerous times, although he doesn’t know that. He does know that I’m not happy but he tries to tell me that I’m just not as happy a person as he is or that I tend toward depression. I’m realizing that isn’t the case. I have had a lot to deal with, being presented with this situation from a relatively young age. It’s a problem that you don’t talk to anyone about and that makes it all the more difficult. I have hardly ever even reached out to people on online forums, etc., over the years myself because, even from behind a computer screen, I’m afraid someone will know who I am. I’m embarrassed.

    Thanks for listening Amy! Just typing this all out is helpful to me. I hope some of any of what I have posted will help someone else somehow.

    *****

    Amy replied:

    Lilly:

    Let me make a couple of things extremely clear.

    (1) You have nothing, that’s NOTHING, to be embarrassed about. While some people may find the situation to be embarrassing (just as they find breast feeding in public to be embarrassing), that doesn’t mean that you need to be embarrassed. You are trying to deal with a complex, difficult, and emotional painful problem. We all have to do that from time to time. However, most of us don’t have to deal with one for 25 years … and your husband is clearly not helping.

    (2) It is possible (I am not encouraging you; just stating a fact) that you may need to cut the ties and just move on. How and whether to do that obviously depends on all sorts of factors that I don’t know about. What I do know is that there is no way I could personally stay in a relationship like your current one for another 25 years unless there was radical change for the better. You have better things to do with your life. And, if you were to move on, you might find you “allowed” yourself to talk about why it had happened without that sense of embarrassment. After all, you must have enough friends and acquaintances who would ask.

    Amy

  41. Hi Amy,

    I do appreciate your comments and insight.

    I understand what you’re saying about embarrassment. It’s not so much that I’m embarrassed, per se, but that it’s not a topic that you can discuss with a friend. I can’t take the chance that someone wouldn’t spill my secret … or that it would embarrass my husband. It wasn’t until years ago that I ever talked to anyone about this and that was the therapist I started going to. What’s amazing is that her husband had prostate cancer as well and so she’s been through the same things.

    I really don’t hold out much hope for things improving to the degree that I have a fantasy that they would. I don’t think the therapist has been much help and not sure how much they can be. It’s something that has been going on for a long time. I’m trying to find ways that I can cope and not blame myself, that I can let his comments roll off my back. I realize that I have neglected to follow some of my interests and I’m working on doing that — getting out of the house, taking up some hobbies, etc.

    One frustrating part is that my husband doesn’t seem to think things are all that bad and he thinks we have talked about things, while I don’t think we really have. Maybe it’s the difference between men and women. I think we women really can access our feelings better and don’t have as much problem discussing things whereas men seem to have more problems with it or just simply don’t do it.

    After our last therapy appointment, things were rough. You’re supposed to “leave it all” at the therapist’s office, but that’s ridiculous. We finally talked some more and I felt a little better. I did tell my husband that I think the prostate surgery really devastated our relationship and that we should have had some help and counseling a long time ago to help us deal with things.

    I’m trying to prepare myself for another therapy appointment (coming up in a few days). This time, I want to be my strong self, not be emotional, and just be able to clearly state the things that I cannot handle in the relationship. I just feel like there’s so much sometimes, but I need to slow my mind down and just tap into that stronger part of me I know I have. :)

    Honestly, I think I have felt like most of the issues have been tossed in my lap. If I don’t respond to his advances, then I’m not sexy enough so I’m a failure there. I have gotten to the point where trying just feels like too much work and I have shut down my relaxed, sexy part. The guilt and the feelings of responsibility I have are sometimes overwhelming. There is always this elephant in the room — ALWAYS. It’s like we’re supposed to be having sex all the time. Years ago, I expressed interest in playing a card game and asked him if he would like to do that and he said that if he was going to spend time playing a game that his time would be better spent with us having sex.

    The thing is, I could relax a little more if I didn’t get some of his comments sprinkled here and there that make me doubt myself, wonder how he really feels, etc., and if when I did relax and cuddle a bit, he didn’t try to make it advance further. It always feels like when we do have talks and clear the air that he immediately tries to turn it into sex. It’s weird.

    A few nights ago, I scooted up to him in bed, which I haven’t done in awhile, and he started touching my nipple. I was happy to just relax in his arms. After a bit, I gently moved his hand because his touch wasn’t doing much for me except tickling me, but being close to him was nice. When I said “it tickles” in a kind way, he chuckled and said “that’s seriously the stupidest thing I have ever heard in my life.”

    Sigh

    So I go back and forth between this emerging relaxation where I think I can just get back into the sexual part and then some comment will come out of his mouth that just makes me feel defeated and down. I feel like he doesn’t respect me, like he thinks he is superior to me. And I’m the one with all the problems. That point really comes out. The therapist I/we are seeing now is the one we saw years ago and when I went back to her this spring to try once again to figure things out, my husband was very happy that I was getting “help with my problem.” He thinks it’s all just depression, on my part. But it’s not clinical depression, it’s that the situation and comments get me down.

    I’m really glad that I found this site. It’s nice to have your comments, Amy, because I realize I am not alone and that my thoughts and feelings aren’t out of line! This is so important to me! For so long, I have felt like I’m in this all alone, like he’s my only mirror and I’ve lost myself. I think finding a good forum, especially one focused on women affected by prostate cancer, would be a fantastic resource for me. I see lots of women comment here and share their pain and frustration. It’s like women are not really considered to be affected by the prostate cancer issues but we are of course! Several times my husband has said how he has been dealing with this for X number of years and I’ll say “I have too. You haven’t been doing it alone. I’ve had to deal with it too.”

    Well, I’ve typed way too much! :)

    Lilly

    *****

    Amy replied:

    Hello Lilly.

    It has seemed to me (for many years now) that disorders like prostate cancer that affect male sexual function have a strong tendency to then accentuate many of the minor problems that normally exist between couples.

    Usually, sex is a way for couples to be able to have fun and “private time” together and to “forget about” the minor irritations that they may cause each other (as in “Why can you never be ready to leave when I tell you we need to go?” and “Why do you never offer to do the dishes after dinner?”). The problems that men face when they get treated for prostate cancer often take away that “kiss and make up” aspect of sex. It becomes yet another of the irritations (and by no means a minor one) instead of one of the releases.

    I do know that two of the most important things in dealing with all of this are that: (a) You need to be able to be clear (at least in your own head, and preferably in your husband’s too) that most of what is going on here has nothing to do with the sex and everything to do with the communication problems. (b) Your husband appears to be unable to realize that intimacy does not always involve sex. The therapist ought to be able to help the pair of you address this. It won’t solve all of the problems, but while your husband keeps harping on the idea that you aren’t a 24/7 sex fiend and that everything you are feeling is therefore in some way your “fault”, what is really going on is that neither of you is really capable of responding to the other’s needs for intimacy (of whatever type) in a satisfactory manner. Equally, while you let him go on harping on this problem, he is continuously undermining any chance of progress beyond it.

    Men are from Mars and women are from Venus (at least metaphorically speaking), but while we are all living here on Earth, some compromises are important!

    :O)

    Amy

  42. I forgot to say that yes, Amy, you are correct that it may be time for me to consider leaving the relationship. I have thought about it many times over the years. I never come up with enough courage to even take a break, like a separation, to clear my head. I feel many times like I have lost the fun, nice part of me. It’s too easy for me to get down, worry, feel like I’m to blame or not doing enough … on and on. That’s mighty hard to live with.

    There is enough good here that I don’t want to make a mistake. But at the same time, some of the things I have to deal with … I want them to stop. However, I’m slowly accepting that I can’t change someone else. With that in mind, I’m trying to figure out how I can deal better with his comments. Can I deal with them better? Will they eventually make me want to leave? Maybe. I guess I’m just not strong enough to make that decision. Too ambivalent. But I am trying to just expand my activities and create a support network of friends, etc., so I don’t have to depend on him to be my “mirror” and the only source of feedback on “how I am.”

    The things I’ve shared here make my husband sound horrible and quite frankly he is on lots of occasions. But just like anything, it’s not 100%. That’s what makes things difficult. When things are bad, I want out, but if we talk a bit, things are better. It’s just a cycle though, that I can clearly see. It happens over and over again, just not always at the same intervals.

    I think my husband’s expectations of our sex life are unreasonable and I’m not sure he fully appreciates just how much prostate cancer has affected us.

    Like I’ve said before, if we could just put the sex stuff aside and have some fun, without there always being this elephant and this “sexual expectation” there, looming like a cloud … maybe things could be a lot more fun! :)

    *****

    Amy replied:

    Lilly:

    So that’s going to require you to be less acceptant of the criticism and very much clearer with him about what you need to have happen. It’s gonna take two to make this into fun … and maybe even a party! Make sure you take the “strong” you to the therapy session. The “emotional” you may be reinforcing his beliefs that this is all in your head in some way.

  43. I am happy to say that I was successful in bringing my stronger, rational self into the therapy session. I finally feel like I got a lot of things said that I’ve wanted to say and therefore, it really felt like this was one of the most productive sessions I’ve had. I did feel much clearer on things, much more confident and I was not willing to shy away from things.

    We will see where things go. I have renewed confidence in the therapist.

    One thing I really noticed is that for everything I bring up, my husband has a logical explanation. Well, explanations aren’t very helpful sometimes and they don’t always make things better. He seems defensive, like when I describe how I feel, he usually responds with his feelings as a counter, like my feelings are secondary.

    I was able to say that as I see it, the prostate cancer surgery and the results from it are our main issue and the thing that has really caused our problems. You know, it’s hard to explain, but it’s something I’ve realized for years, decades really, but at the same time, have been working to make some of the symptoms better. I’ve been in the middle of things and not really stepped back and said that all the things that I’ve been dealing with are the result of the surgery and radiation and it’s effects.

    We do have a communication problem and it’s a long-standing one, peppered with hurt and guilt — mainly the guilt he feels for the results of the prostate cancer surgery. But I think that guilt, and resulting anger, gets turned on me.

    Amy, your comments about how the surgery takes away the ability for sex to smooth away the minor irritations of life and instead becomes one more irritation — that’s right on the money. For me, sex became work and yet one more problem I was supposed to solve. I’ve worked hard to make things right, but at some point, I just got tired of trying and turned off the sexual part of me. Something that should be natural and come from relaxing with one another is now a negative. Add in his smart ass comments or sexual innuendos and other jabs and you’ve got someone who just isn’t interested.

    Thanks Amy!

    Amy responded:

    Dear Lilly:

    I am pleased to hear that things seem to have gone better at your most recent therapy session. It may take time, but it sounds as though some real progress may be possible.

    Your husband’s tendency to be defensive and seek a “rational” explanation for everything is probably a key part of his own pain in dealing with all of this. It may take him a while to come to terms with it.

    Amy

  44. I understand that his defensiveness and “rational” explanations may be his way of dealing with the pain. But they are also part of his overall personality, I think. I feel like he’s so smart and I’m the dummy that needs to be educated. :)

    I am really hoping that we will make some significant progress with the therapist this time. Honestly, I feel so down sometimes that getting out of bed each day is an effort, but I do it. I know I need to focus on the positive and not be so hard on myself. At this point, though, I know I don’t always feel so positive about myself. I feel like things are mostly my fault for not being sexier or something.

    If it’s okay with you, I’ll keep you updated. :) If nothing else, it’s good for me to write about this. I think keeping a private journal about all this would be very helpful for me … but it’s also hard to go back and read. Somehow, writing about it makes it real, and a part of me wishes it wasn’t and that my life was different.

    Lilly

    *****

    Amy replied:

    Lilly:

    First … Feel free to write as often as you like.

    Second … There are three sorts of “smart” — intellectual smart, emotional smart, and “street smart”. Your husband may well excel at the first, but he appears to be less than brilliant at the second, and not being brilliant at the second may limit his ability to excel at the third.

    :O)

  45. Thanks Amy!

    I know what you’re saying. There are different kinds of smart. My husband is intellectually smart — retired professor. ;)

    I do not understand how he cannot figure out that his comments put a damper on things. I just do not get it! It’s so frustrating. I have told him over and over these past many years that it’s not what he says, sometimes, but how he says it. I just can’t seem to get through to him. He has an excuse for every remark. You just cannot imagine how frustrating it is.

    I am having so many insights lately, though, that are really helping me I think. I was reading over on http://zenhabits.net/ . I found this site awhile back and I must say, it is so helpful. I share the link but feel free to delete these last two sentences if you don’t want it here of course.

    I realized that I don’t have to react to things my husband says. I don’t have to take things to heart and have them make me feel hurt, sad, and in despair. When that happens, I become scared and immobile: I’m afraid to function, feel like less of a person, and the future seems bleak.

    Rather, I can hear the comments and let them float by, like clouds, much the way that dealing with your constant thoughts during meditation has been so eloquently described to me.

    I don’t have to take his words as the truth, the absolute pronouncement about anything, including me. I just don’t.

    This realization made me feel as if a weight had been lifted from my shoulders.

    I also realized just today that I found prostatecancerinfolink.net years ago. I think it must have been 2006. I met another woman and we exchanged e-mails but I cannot find that info now. I was so grateful to find support for my situation then. I just don’t know why I didn’t think about there being support groups online. I suffered for so many years alone. I’m sorry that I drifted away from this site. Life just gets in the way I guess.

    I’m going to continue with therapy and take my strong self :) I’m realizing more and more that I’m not happy and things have to change for me to want to stay in this relationship for, say, another 5 years.

    Therapy is frustrating because there is so much to discuss and work out. I think I have been feeling like I have to take examples and evidence with me, to make my case, to show the therapist the things he says and does, the difficulties that we both have had to deal with as a couple as a result of the cancer. It make me feel anxious because I just am so desperate for someone to validate my feelings, to say, “Yes, that is really a crappy way for your husband to talk to you.”

    I now see that I don’t have to take every shred of evidence with me. My feelings, my experiences as a person in this relationship are valid! I’m not crazy! I’m a good person, trying to make the best of a crappy situation. And I’m not sure most women would have put up with as much as I have, quite frankly.

    Lilly

    Amy replied:

    Social norms taught all too many women to defer to their husband’s “intellect” when it came to dealing with all sorts of things — from whether they should have a job to what they should wear and how they should dress to almost everything about sex. It doesn’t work for anyone who has the capacity to think for themselves! And it doesn’t matter how intellectually smart the man is if he is getting a failing grade on the emotional smart scale and the empathy scale. He may not even be “hearing” your therapist (well or at all) when the therapist says something like, “I can see why his response is upsetting to you.” Next time the therapist says something like that, maybe you need to look at your husband and say, “Can you see why that response is upsetting to me?”

  46. I wish the therapist would say, “I can see why his response is upsetting to you.” She hasn’t, but I think she gets it. Maybe I’ll just flat out ask her this next time.

    My husband just thinks I’m accusing him of things. He has used that word: “accusing.”

    He interprets my being relaxed enough to cuddle up to him in bed, then a week or so later, after enduring some of his comments or bickering, not wanting to be close to him, as “playing games.” Since the therapy years ago, which he apparently thought was just about getting my libido back so we would have sex, hasn’t really changed our sex life, he says I “tricked him.” I told him the therapist wasn’t just a sex therapist and the therapy was to improve our communication and our marriage.

    The difficulty I face with his intellect and comments is that it’s hard for me to trust my feelings and emotions. He makes comments that make me feel like I just don’t think right.

    I do think that perhaps I should not think about things that happened in the past. I would admit that I likely tend to ruminate. But these things have hurt me.

    I was thinking today about the fight or flight response and, you know, I think the reason that I have felt so bad, depressed, hopeless (whichever word you choose …) is because I have wanted to leave. I have known that I’m not happy if I am completely honest with myself. But instead of doing, leaving (flight) I stay. I stay because I feel like I would be a horrible person to leave. I stay even though I fantasize about getting my crazy, fun, laughing self back — back more than just for a few weeks at a time. I stay because I feel it would be wrong. I stay because I would feel guilty. I stay because he would make me feel, by the things he says now and would say then, like I was irrational for leaving.

    It’s like I need his approval and acceptance of how I feel.

    I am working on resurrecting my strong self and keeping her in place instead of the sad self that feels despair and doesn’t know how this is all going to resolve itself. Trying to be strong and not scared. :)

    *****

    Amy replied:

    Hi Lilly.

    So do your think your husband has any clue that you have actually thought about walking out the door?

    Maybe you need to get up the nerve to look him right in the eye during one of the therapy sessions and say very bluntly something like, “Do you have a clue how miserable you manage to make me feel sometimes? You obviously haven’t got any idea how hard I have tried to work at this marriage. And you have never thanked me for all my efforts. Maybe I really should just pack my bags and go. Maybe we’d both be happier. I’m pretty sure I would!”

    I always remember watching some couples having absolute screaming matches with each other and then making up as though nothing had happened at all. Have you seen the commercial for Haagen Dazs Gelato on youtube? It always makes me grin. Maybe you need to find a way to restructure your communication system with your husband to be more like that!

    OK … Maybe that’s a stretch … but you do need to get beyond feeling you need his approval all the time. He clearly doesn’t feel that he needs to seek yours!

    Amy

  47. Dear Amy;

    Since my first letter to you I am still very depressed and having a really hard time with that I am living with basically no touch and my husband doesn’t comprehend my insides are literally dying because it is a core part of who I am. He has never been a touch person, but we both enjoyed regular sex which helped with the touch neediness. I think the only reason I can continued to work on this is I am married to such a good person and we get along well in most areas.

    I have been following Lilly’s correspondence and from her first letter I wanted to share my first marriage story. I just wasn’t sure if we were allowed to in this format.

    When I was 18 I married a 20-year-old for the main reason we were having sex since I was 16. (Once again this needy sex person, ha-ha.) We stayed married for 20 years because we didn’t believe in divorce. He had decided after 2 months of marriage he didn’t want to be married to me and probably made every day after that some sort of punishment for me. (I wasn’t even able to see the severity of this until after I left and started healing.) He especially liked to use areas I perceived as my weaknesses to bring me down, such as I am dyslexic. When I first married him I was totally was ashamed and embarrassed about my capabilities to communicate in writing and would go lengths not to. By the time I allowed him to finish with me not only did I believe I couldn’t write; I now believed I couldn’t speak, fit in with others, not intelligent, etc. The truth is I can’t write the same as most; now I take on the attitude: oh well, too bad … You don’t like it, don’t read it … It is who Janis is and I now love her enough to know to accept that in me. This wasn’t just the way I wasn’t respected, but I don’t want to write a book right now, maybe in my next life when I can write better.

    One of the ways this was confusing for me was we also had some good areas in our marriage and we had a regular sex and touch relationship. He was so good at making me believe all the issues we had were my fault. I did everything I could to make him love me … if I was thin enough … if the house was cleaner … if I did all the yard work … the prefect mother … the prefect Christian, etc.

    It took me 2 years to work through a process in my bath tub every night to get the courage to leave. This is what I did:

    I broke women down into four categories which I gave my own meanings to and could relate to and then decided which woman I wanted to be:

    1. Cinderella: She serves everyone to a fault, those around her have learned to use and take advantage of her to a point they feel they don’t need to give anything back in return. Cinderellas lose self-worth. When you read the story of Cinderella you see clearly that Prince Charming did not rescue her; she finally had the courage to rescue herself. When she finally was able to do so, she became worthy of the love of the prince … Don’t you love it!!! I was a true Cinderella.
    2. Princess: She is loved by most and fun to be around. She loves to receive from others more then she gives. The Princess is a well-enough balanced person, but she has to be careful for her strong desires to receive can turn her into a Queen.
    3. Queen: she likes to receive all she wants and will go to great lengths to achieve this. She does not give unless she thinks it is a way to get what she wants. People act like they like her and give her what she wants mainly because they are afraid of her. They know that if she doesn’t get what she wants she could have your bloody head on a platter!
    4. Goddess: Goddess doesn’t mean she wants to be worship; Goddess is a woman that believes she is a child of God. She believes God created her to be loved and respected and to give and respect others. She values herself enough not to let herself be abused by others and has learned that receiving helps her to give even more to others. She gives from the heart not to receive. Those around her see that and respect her even more.

    It took me 2 years to decide I was no longer going to be Cinderella, I was going to be a Goddess and the only one stopping me from that was me. It wasn’t easy and there were a lot of tears, which I decided to keep behind closed doors at night. Each morning I got up and walked out the door with a smile on my face, I made sure I walked with a straight confident back and would go places to be around people. The next thing I knew I had made Saturday morning coffee house friends of around 15 people; we would listen to the jazz band; talk about all sorts of things and laugh! The group of both men and women had teachers, lawyers, to bus drivers. After a couple of months I went over to my husband’s house and calmly told him, “You lied to me.”

    He said, “What?”

    I said. “You lied to me. I can communicate. People do like to talk to me. You lied.”

    I had a lot of set-backs and a lot of fun! Sometimes in fighting to be a Goddess I even was a Queen (I never took a head though!). I look back at my decision to leave my husband with no regrets except for the temporary pain it caused my children and family. I even know in my heart that God looks down on me with a smile that I chose Goddess.

    I guess when I read Lilly’s story, I can’t help wonder if the issues would be the same, just not centered on sex if her husband hadn’t had prostrate problems. I don’t know, just something to think about.

    P.S.: When my previous husband and I were separated for several months, I asked why I never could do things right. He said he had some affairs and if he stayed angry at me it justified his right to do so. The light bulb in my head went off that there was truly nothing I could have done to be good enough. I just smiled at him, because that was all this Goddess needed to do.

    I know this is way too long, but I guess what I am trying to say is that each of us can create a good portion of our story and learn how to work with challenges that come our way. My husband now is so different; for example, when I said I was going to get my Real Estate license, he said, “Get your Broker’s license.”

    I said, “I don’t know if I’m smart enough.”

    He she said, “Hey chick, you are.” I was the second one to finish the test the day I became a broker. I had to do the work, but I have a husband that believes in me.

    Thank you,

    Jan

  48. Hi, Amy,

    I love your spirited reply to Lily. However, nowhere does she mention that her husband has/had prostate cancer. Can we assume that’s the case (else why did she write to you) and ask her if the therapist helped him and her grapple with that? If that’s not so, perhaps the two of them could be guided by a (new?) therapist to smooth out some of his ongoing (recent?) personality kinks and in turn, begin to give her more credit and positive acknowledgment.

    I agree with you that Lily needs to tell her husband that he’s mistreating her, and if it helps to do so in a therapy session. If she does not do so (and maybe even if she does?) one or both of these marriage partners will become so explosive that their marriage will completely fizzle. This will certainly occur without the communication and self-regard you’ve counseled,

    At this point I don’t think things between them will get better until they talk openly with each other. For sure, as Lilly wrote and you implied, there is no room in their life for sex therapy until their more basic communication issues get settled. I can assert this not only as a rabbi but as an intimacy coach and sexuality counselor in my current practice.

    Rabbi Dr. Ed Weinsberg, Sarasota, Florida

    *****

    Amy responded:

    Hi Rabbi Ed. How are you?

    If you scroll back up the page you will see that Lilly has been writing to me regularly for a while now. Her first message was on July 3 … and yes, her husband was diagnosed with prostate cancer when he was 46 years old.

    Amy

  49. Hi Amy:

    Me again ;)

    To answer your question, no, I don’t think my husband really thinks that I have considered walking out the door. I do think he may suspect it though. He makes comments like, “Well, when you finally get rid of me you can do ______.” Two years ago, when we were in a bumpy period, he asked me if I wanted a divorce. I said no at the time, but honestly, I don’t know. Part of me does and part of me doesn’t. That’s my struggle right now.

    I think I do need to say something just like what you’ve suggested, in the safety of the therapy session. If I had to guess, he likely won’t hear me well and won’t take it completely seriously. I suspect he’ll counter it with his own similar statement about how hard he has worked and how hard the prostate cancer has been on him.

    Believe me, I know it has been hard on him. I think that’s what makes the decision of whether to stay or go so difficult. I’ve struggled with it for years.

    My husband isn’t a total jerk and things aren’t all bad. That’s what makes it difficult for me. He does thank me for every meal I make. He thanks me for lots of things. I can’t say I’ve ever really wanted for anything material in our marriage because of his salary. (I also realize that I’ve worked as well, just not as full-time or for other people most of our marriage. But I have contributed. I haven’t “just” been a housewife.) In therapy, he said that I don’t thank him enough. For instance, he says I’ve never thanked him for earning his salary. That is true. I think it’s because a lot of the times I’m angry at something he’s said. I wonder though … do other spouses thank the other for working? I’m not ungrateful at all, but it sounds a little weird.

    I think our relationship has many characteristics of a parent/child relationship rather than a marriage of equals. (Maybe that thanking him for earning his salary seems funny to me … because it is?) Some of this is caused by our age difference of 23 years, some by his being an intellectual/educator type, some by my letting it happen. The first couple of times he raised his voice or talked down to me or lectured me, etc., I should have said it was unacceptable. But I didn’t. I didn’t because our relationship was new. I had left a very short previous marriage with someone who couldn’t (or didn’t want to) hold a job, drank too much, smoked pot. Now, here was a mature man who was a professional, owned his own home, etc. He was a “good catch.”

    Also, there are things that I would lose if I left him, like where I live, trips we take, etc. I know … it sounds short-sighted and superficial to say that, but it is true. As bumpy a road as I feel we’ve had, we still have things and a history and have a life together. I’m afraid of upsetting that. What if I throw it all out and am miserable? At the same time, I frequently think of just where I would want to live, having my own place, and how comforting all of that makes me feel inside. I don’t think I would be lost.

    I’m scared to stay in the same situation but scared to move forward and yet I know I have to do something.

    I think my husband may not take me seriously because I said in our first joint therapy session this time around (about 2 months ago) that I wasn’t happy and that things needed to change now because I can’t go on like this and I don’t want it to affect my health. But … have I done anything since then? Not really. I have reacted just the same way to any crappy comments he makes, sometimes calling him on them and/or telling him to stop. But I haven’t really made a move. I’m still working things out in therapy. I don’t think that’s a bad thing I guess.

    He has gotten better. He hasn’t made hardly any snide, sarcastic remarks in several weeks. But how long will that last? Sadly, I don’t think for terribly long. I don’t think he can help it.

    Right now, the questions I need to find answers to are these: How do I know if I want to work on the marriage? Yes, we can improve our communication. I know there are issues we can improve. BUT … and this is a BIGGIE … the sex issues will still be there. I’m still sick of not having a more normal sex life and I’m tired of working on it. Is that even fair to say? There’s so much baggage there. How do you just forget and move forward? Do I just dwell too much on the past, which I get accused of? How do you know whether to leave or to stay? I don’t feel that warm fuzzy in the stomach feeling, or even really a fun feeling most of the time when I look at my husband. I feel like we’re more roommates than anything. Honestly, that is what it feels like.

    Also (and this is one I’m not sure I can say out loud in therapy at all), I’m not sure I’m physically attracted to my husband.

    Phew! That’s a lot of questions ;) LOL.

    I think to answer my questions, I need to be HONEST with MYSELF. I need to say these things in therapy, not just finally be brave enough to type them to you. I know that. I also recognize the things I need to do better or need to correct in my behavior that got me here and/or continues the pattern.

    Jan … THANK YOU! I can’t say it enough but please know your post meant a LOT to me.

    Jan, I think that many of the issues that exist would exist if my husband hadn’t had prostate cancer. In fact, I look back and remember a few instances, including on our first date to a restaurant, that were a bit telling. I think the age difference and my wanting to please were factors, Although I’ve always been mature for my age, I was still young.

    Okay … I have a therapy appointment this Friday. I’ll check in here afterward :)

    Amy … Thank you so much! I could type all of this to myself, but having feedback from other people, so I have perspective and know I’m not crazy … It means SO much to me!

    I typed a lot as usual. ;)

    Lilly

  50. Hi Amy,

    The therapy session with my husband was pretty intense.

    We had had a fight a few days before and I hit my limit and told him that I was done with the relationship. I know I probably shouldn’t have, but I didn’t say it lightly. I am just so sick of the bickering and his tone of voice, etc. So the first thing he brought up in therapy was that he didn’t know if I was leaving him or not and it was hard for him to plan anything. I didn’t directly answer it because I don’t know. I did say that if the communication issues don’t improve significantly that I didn’t see how I could stay because I was so tired of it.

    I’ve mentioned the prostate cancer as being a main contributor to the difficult issues in our marriage at least three times in therapy. I know the therapist hears me, but we’re working on listening and communication skills at the moment. I think from what I read and know that communication can make things a whole lot better … or a whole lot worse.

    What I noticed (and the therapist did too) is that he doesn’t really hear what I say. He takes things I say and spits out comments like, “She thinks I’m a bastard” and similar negatives when asked to repeat what he hears as my feelings or an issue I express.

    I think he feels ganged up on by two women, quite frankly. I heard him mumble about being a stupid man who doesn’t know anything when he was getting ready for bed.

    That said, things have been going pretty well these past few days. I think if we learn to communicate better and I start doing more things for myself, like pursuing interests outside the house and without him always, that things would be a lot better. I realize that in many ways I have put my life on hold in a strange way. I need to do some things that bring me joy. So many times I just don’t do things because he doesn’t want to.

    I don’t think that he ever mentions my feelings, although he tells me how hurt he was about my mentioning leaving him. Yet it doesn’t seem to register when I bring up the remarks he makes.

    That said, I still don’t know how to deal with some nagging feelings. I guess that’s what therapy is about. I don’t feel like I truly get all the things in my head out.

    I’m at a point in life where I feel I want to do something different. I guess I’m at that mid-life crisis stage in life, though I hate to call it that. It’s just that I think about being married another 10 or so years and I just can’t fathom it on some level. There are still the intimacy issues in our marriage and I can honestly say that I don’t feel a great deal of physical attraction to him. But how the hell can you say that to someone?! I don’t want to hurt him, yet it’s hard to deal sometimes with the feelings I have, to feel them and not put myself down.

    I worry that if I don’t go out and do some things I want to do, even live in a place I want to live, that I won’t have that option down the road. I know I’m not the first woman or man to feel this way.

    Our relationship is decent. We have similar values and tastes and such. But the things that aren’t so great, when they get crappy, they’re really crappy. But I also see where I’ve been holding on to some things that hurt me, expecting … what I don’t know. It’s hard to know whether things are signals that the relationship is over or not. I guess it depends on whether both want to work at it.

    It comes down to how much pain it would take to leave versus how much pain it takes to stay … that’s what it seems like. Things aren’t so bad. But I think about whether I could find something better, more satisfying. It’s easy for someone outside to say you should stay or go. It’s not easy when you’re that person. :)

    I have been learning some better communication skills and I really see how I haven’t done a very good job.

    That’s all for now!

    *****

    Amy replied:

    Hello Lilly.

    No one is going to be able to tell you with certainty what you should or shouldn’t do. In the end, you are going to have to make your own decision(s) about all of this. However, I do feel that “getting the cards out on the table” for everyone to be able to look at (as you seem to have been doing) is a critical step along the way. Whether everyone else “reads” the cards the same way you do is a whole other matter, but if they can’t see them they are just guessing! And probably not very well at that.

    Amy

  51. I understand what you’re saying Amy. :)

    I realize that I don’t always say everything that’s on my mind. I feel that I have genuine concerns but they aren’t being heard. They’re being heard as accusations of him.

    For instance, he expressed upset and concern about my saying I was through with the relationship after our argument, but what he said in therapy was that he was upset because he didn’t know how to plan anything for the future because he didn’t know whether I was leaving him or not.

    He sees me as just a depressed personality, I think, rather than really listening to me. My concerns are just complaints. My upset is just irritating. I thanked him for something last night, made some comment about how nice it was, and he said that he’s a nice person but he doesn’t know what the point is! I just looked at him and sighed.

    It’s these types of things that I know won’t stop. And my trying to make them stop is not where my focus should be I guess. I can’t change him, but I can do things to explore what I want to do going forward. :)

    It’s all hard for me because I start doubting myself and then just trying to smooth things over so we can live in the same house. It’s a cycle I think. I try to talk, then he may get upset and I try to smooth it over and back down or deny the wholeness of what I feel. Kinda crazy making. But I’m working on communication skills that I think can be a big help.

    *****

    Amy replied:

    Lilly:

    When one is in a negotiation process (which you and your husband very clearly are), sometimes it’s good to back off and “smooth things over”. But sometimes it’s wise and important to “stick to your guns” and see if the other party will do the backing off and the “smoothing things over” piece. It is all part of the mutual appreciation and learning process.

    As an example, you said that your husband expressed upset and concern about you saying you were through with the relationship after your argument but not in the therapy session. You clearly hadn’t backed off about that one. And so he obviously was making some attempt to be the one who was trying to take a more positive step by admitting his “upset-ness” and concern. It may not have been the perfect response, but it was clearly better than nothing.

    I like the fact that you just sighed when he pulled the “I’m a nice person but I don’t know what the point is” card. But you do need to set some clear expectations for him, as in “Being a nice person is only one part of the solution. I’m looking for the nice person who understands why he upsets me and works on stopping doing that.” Maybe that’s a good place to try to start the next therapy session. And so that he understands that you understand it’s not “all about him”, you can also ask “What do you want from me? Really. In simple day to day terms that have nothing to do with the sex issue.”

  52. I think the attempt he was making in therapy regarding my comment about being through with the relationship was more selfish. He has no trouble telling me how much that comment hurt him and how it upset him because he couldn’t “plan,” but he doesn’t really ask why I said it. He doesn’t understand my frustration.

    I told him I just cannot take all the bickering and fighting anymore and that’s the reason. He says he doesn’t like it either.

    The therapist says we both need to work on listening better, but she doesn’t offer any concrete steps or advice. I’ve found more resources online and in the library. Mostly, the therapist is helpful because it’s a safe place for me to speak my mind or get feelings off my chest without being afraid of it turning into a fight or being ridiculed.

    However, there are just some things that I know I feel that I cannot say. Yes, I’m angry that I lost some of the best years of my life to this. I spent my 20s and 30s and 40s having erectile dysfunction being the elephant in the room. The early experiences we had in the months and years following his surgery, with him being impatient about not having erections back to “normal”, were extremely hard on me. He took it out on me in and this is something that he acknowledges. He’s said that he knows that he ruined things for me.

    What he ruined was being able to relax and have sex with someone.

    Amy … that’s it. He ruined sex for me. It became work. I did things that I probably didn’t want to do. I spent hours-long marathons trying to make things work. I found pills, I found pumps, I found drugs. But all through it, I was feeling worn out, mechanical. It was just too much for me I think. I just wasn’t sexually mature enough nor emotionally mature enough.

    I’ve been angry. I’ve wanted out. I’ve wanted to be with someone my own age.

    It isn’t anything that personal against him, exactly, it’s just that I haven’t liked what I’m going through and he’s said and done some crappy stuff. We both have. But does anyone care how I have felt? It all seems focused on just making a dick work. I realize I shut all my sexual feelings down. I just don’t feel like it. I wish someone understood. I’ve had no one to talk to about all of this for so long. …

    So for years, it’s been him pushing the sex stuff and me feeling turned off by the whole entire thought of it. Add to it the incontinence, some snarky comments and other things, and there’s just no romantic feelings in me. I can have fun doing lots of other things, but mention sex, or touch my leg suggestively, and I freeze. I get scared it’s going to lead somewhere. Sigh.

    When I look toward the future, I don’t see things changing a whole lot sexually. I know we can work on getting along better. We do get along on many levels, share interests. But is it enough? Me, the woman approaching 50, knows that she’s either going to have to stay until he’s gone or make a difficult choice to leave for something else. I do not have the guts to leave. Things aren’t bad enough for me to do so. And I know I don’t hate him (though some days, I certainly have felt less than like, that’s for sure!).

    I feel bad for him and what he has had to go through. I can’t hurt him, even if maybe everything in my life isn’t exactly the way I want it to be. My life hasn’t been that bad. He reminds me of this. …

    I think approaching middle age has me scared. Scared I won’t have a “normal” sex life ever again. Scared that by the time he passes, I’ll be too old.

    So the thoughts I have … there’s no easy way to say these things. Saying them out loud makes them real. Keeping them in my head makes them my private thing, which I then try my darnedest to solve.

    Maybe I just need to say them in private with the therapist.

    But often when I try to isolate the things that are making me unhappy, they do their best to hide from me. I can reason away most of the negatives as “not that bad.” So I think I keep ending up in the same place, just going through a cycle.

    *****

    Amy replied:

    Dear Lilly:

    If you don’t tell at least the therapist the whole truth, then you aren’t being open about the whole problem — with the therapist or with your husband. This is not a math problem that one can solve by logic and reading the right books and other stuff on line. It is a physiological, emotional, psychological, and communication problem that has to be worked at, really hard, by both parties if there is to be a satisfactory resolution for all concerned.

    Of course neither I nor anyone else (the therapiest included) can tell you whether a “satisfactory” resolution is even possible. Only you and your husband can work that one out … if you are able to do so.

  53. Amy, your words really hit me. You know, I realize that the therapist I was seeing, by myself, years ago, just said the same thing to me last year. I remember her telling me that I was trying to use the logical side of my brain to solve an emotional problem.

    Wow. I realize I’ve probably done this my entire life.

    It’s why I start searching online for resources and things to read and head to the library and start finding books on the subject.

    It’s funny (well, not really …) but I can type pages about how I feel, but when it comes time to say any of it out loud, I censor myself and don’t quite say exactly how I feel or to the degree that I feel it. I think it’s because I don’t want to hurt anyone’s feelings and also because saying it out loud makes it real. I guess I really have to own it then. I tend to want to explain away my strong feelings, downplay them.

    I know, also, that I am ambivalent about what I want, so expressing my feelings feels like making that particular feeling have weight but I still don’t know what I want to do about it. Like I said in my last post, I can rationalize things away because they “aren’t that bad.” But … at the same time, when I think about those same things staying the same for the next, say, 5 years … that makes me crazy, and sad.

    I was able to speak about my feelings much more openly in the last session. I did say that I thought that the prostate cancer affected our whole relationship, and that I was too young at the time to understand just what the ramifications of it all were going to be. I have acknowledged that neither my husband nor I had any outside help through most of it. I acknowledged that he has to deal with the direct physical results in a way that I don’t and that I feel bad for him.

    I said in therapy that I’ve never really talked about how I feel about all of it because it seems selfish. Who cares about how I feel? He’s the one who has had to bear the physical and emotional consequences of it all. Bringing my feelings into it seems trivial. So it has really stayed bottled up for years, and it comes out in anger, sadness, frustration, and depression.

    There are things that I am not happy about but that I don’t see options for changing. I try my best to do what I can about the situation, but there are limits.

    I know it will take a lot of work. I’m not sure, though, to be quite honest, if things will ever change all that much. We go to therapy, but while last time he did listen to me better, most every time his responses are just logical explanations for why he does or says things. If I bring up something he said or did in the past, that affected things going forward to me, for instance, he will just say yes, but that was a long time ago, or I don’t do that anymore. The thing is that things leave their mark. I don’t feel like my feelings are important. That makes it even harder to talk about them. And as for things in the past coming back up in the conversation, I was successful in saying in our session that the reason things come back again and again is that they never get talked about thoroughly and resolved. If he interrupts me, belittles me, shuts me down, then that issue still sits there because it hasn’t been worked through and I haven’t been able to discuss it with him. The therapist really pointed that out to him at the end of the session as a major point.

    I intend to say just that in the next session and see where things go. I don’t feel like my feelings are important, so what’s the point of therapy — in other words, where are we going with all of this? What’s the goal?

    I’m approaching menopause and having a few more physical symptoms that I am (oh fun!), combined with other things like wanting to get out in the workforce again but not knowing precisely what I want to do. I’ve felt this unsureness about the future for at least a year. I suggested last year that he and I make a list of the things we’d like to do in the next 5 years or where we see ourselves or would like to see ourselves. We haven’t done it, but I think it would be helpful. I just see neither one of us getting younger. Actually, I have a bit of anxiety about the age thing which I think is pretty normal at this point, the feeling like you’re at a crossroads and wanting to do something different, realizing that you have limited time left and not wanting to waste it. Ugh. That’s a big one for me right now I think.

    Thanks Amy! :)

    *****

    Amy replied:

    Lilly:

    Have a look at this article. It seems likely to me that no one ever had a conversation like this with your husband (or with you either, for that matter) when he was originally diagnosed and treated.

  54. That’s a very powerful article, Amy. And, as you can probably guess, no, my husband and I did not have any conversation that even approached that in detail or frankness.

    I remember an discussion in the office with the surgeon, who had all the bedside manner and personality of lint. Honestly, I can’t remember most of it; it has been over 25 years. I think the gist of it was just the details of surgery like how long the hospital stay would be, how long the catheter would be in … things like that.

    There was mention at sometime about the potential erectile issues because the issue of whether nerves were cut during surgery and the implications were made clear. It was the first thing I asked the surgeon about when he came out to brief me when my husband came out of surgery. He couldn’t tell me for sure.

    I’ve learned from reading on another forum that it can take 18 months to 2 years for a man to recover completely from surgery. We weren’t told that. I know a lot of my husband’s frustration came from trying to resume normal sexual activity within weeks of surgery. This urgency, and the frustration and upset it caused both of us, the stress … those are the things I have not quite recovered from. My husband feels horrible about all of the anguish he put me through. He has said so. It’s hard to erase and just move forward. It does have lasting effects.

    Still, even if someone had provided us with such thorough and honest information, I know that it probably wouldn’t have changed my husband’s decision. He has made the comment many times that at least he’s alive. That’s true. But the surgery, and the radiation a few years later, changed our lives forever. It likely wouldn’t have changed mine unless I could sit with it for awhile. Our relationship was new — he was diagnosed 6 months after we met. But maybe I would have been able to think clearly enough to postpone the wedding. I would have liked to take it slower.

    This is something I have brought up in therapy repeatedly. I am trying hard to make it clear to the therapist that it changed everything. It exacerbated communication problems and personality issues that were likely there in our relationship from the start. It changed the dynamics of the relationship. In the article, she mentions that there is no “make up sex” or celebratory sex. It’s so true. Sex becomes work and a big issue to deal with.

    It would seem to me that any therapist with half a clue could put themselves in my shoes and think about how they would feel at 24 years old, facing going through prostate cancer with a fiance. I’m trying to really be clear on just how significant this is.

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