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Ain't the Man I Used to Be... Any Suggestions?

WashedupHasbeen
Posts: 5
Joined: Jul 2012

I'll be 52 in October. I was diagnosed 9/5/05 with squamous cell carcinoma of the anal canal; after surgery, two week-long bouts of chemo, & 5 weeks of getting a laser beam shot up my behind every morning, (plus about a good 2 years' worth of radiation proctitis & all that associated fun), praise God, this Fall I'll be SEVEN YEARS OUT!!!! And what a Wonderful Blessing THAT is!!! ...That experience I would not wish on my worst enemy; & I am just so eternally grateful to God (& my doctors, & caregivers, etc) to have that all behind me (pardon the pun)... So I know I really shouldn't be complaining -- and I'm NOT, honestly! -- but folks, it's been nearly 7 years since I've been able to have sex with my wife... Or, to even... well you get the picture. And it's just Driving Me NUTS!!!

So my question is, the OBVIOUS: What should/can I do about it?? What have other people done? What kind of success/experience have you had?? What would you recommend?? Anybody?? Help!!!!

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

I live on the Colorectal board, but I check in here to see how some friends are doing. I read your post and it struck a nerve with me.

I "understand" what you are saying.

I've mostly been an active cancer fighter for most of my 8-years in the battle. Congrats on you making it 7-years. Our cases are different...I've been active and you had cancer and you look to have been clear - with this residual side effect hanging over you.

Radiation torched my insides as well. Colorectal patients getting radiation have very similar effects that Anal patients do - both men and women.

The results can be devastating for both sexes - much damage does occur - some of it temporary - and some of it permanent.

Mine got progressive after the radiation. At first, it would just hurt like the dickens when it got an erection. Orgasms were very painful.

Over time, things just went dead inside. No movement, no erection, just a useless husk hanging between my legs - half the time it wasn't even good for peeing. And that hurt too, burned.

It was just over.

From a psychological standpoint, a man that cannot achieve an erection makes him feel less of a man...I see your avatar handle reflects much of what I'm saying to you now. I think it comes down more not from the actual physical aspect - but just "Knowing That You Could."

As men, we are geared that our appendage is the key to our manhood. We've been taught that our whole life...that the penis represents life and virility and all of that stuff. That without it, we can never be a real man.

Of course, that's a fallacy. As men, we learn to direct our energies towards the greater good of something else in life. But, still....

I was lucky....time and patience helped me. It took a few years but things recovered enough to be functional. I tried Viagra, Cialis and the other one, whose name escapes me. They did put enough blood flow to achieve an erection and an orgasm.

Nothing is ever quite the same as it was though. And it will never be that way again, not in the way that you remember it. Over time, the ED drugs were no longer needed and now I can get it done on my own with no assistance or any kind of aids. I was fortunate.

Not a marathon man - but if we're really telling the truth, no man really is....they say the average orgasm for a man is between 3-7 minutes end to end.

Some women may argue that assessment...me too....I say give me 30-seconds and it will be all over but the cryin' LOL!

If none of this is an option for you....I can only suggest that you are probably already aware of how you can have relations with your spouse with other known methods.

For you, perhaps a penile implant? I know nothing about the surgery though it pains me to think about, but a urologist might be able to give you some good information and choices that are available.

I just turned 51....I'm recovered enough that I'm not going to sweat it much anymore...but I remember the feelings that you are talking about today. You feel like a failure - but really, man you are not.

You had certain circumstances dictated to you and you had to act to save your life. The doctors are telling you about sex anyway. They should tell men and women what to expect first. Not that it would make any difference.

Choosing between an Orgasm vs Life is a pretty simple equation really. And yet the sex drive is a strong drive, second only to survival.

That's all I got - I just wanted you to know that you are not alone - in how your body responds - and to what you're feeling.

Lots of women over here, so I thought I would cross over and touch base from the male side of things.

There is more to life than sex...you know you're getting old when you tell the wife to keep 'em on:)

I'll leave you with this thought....

"Lovin' Don't Last - but Good Cooking Does..."

Honey, where is that sandwich you promised me?

LOL!

Take care bud...I hope some of this helped.

-Craig

WashedupHasbeen
Posts: 5
Joined: Jul 2012

Well you've said a mouthful here my friend. Some very helpful supportive input. You have had a long struggle; clearly waging the good fight, too. That's important.

What you mentioned about the ED becoming "progressive after radiation" -- Bingo! In my case however, I developed side fx from the chemo even before the radiation was finished; which also turned into a 3 month perianal fiasco. ("Thrush." 'nuff said.) So by the time I was 3 months out from radiation, I was already pretty much a Washeduphasbeen. (Then there was the lymphedema episode; which caused the complete opposite effect - at 9 months out - but that was a temporary [if pretty startling & dramatic] condition. That's another story though.)

What you've suggested here, about the culturally conditioned importance of the male sexual organ's optimal state, etc, blah blah -- Believe me, I'm pretty much tuned into all that. and yeah, I've done the Viagra thing, & the Cialis, & the pump deal; & the Viagra & Cialis and pump all together thing... Well it's like you've said: "There is more to life than sex..."

Mrs A. understands that. And she's just been completely wonderful & supportive, and all of that... The reality is, the ED issue is MY issue/problem; NOT hers. And I know that. But again - like you said - "..still..." It is what it is, isn't it brother? It's just darned hard accepting it -- eh? Has been for me anyways... The last couple of years anyway; since I started getting some libido back (a little). Before that, nothing. Zip. Zero. Flat. Didn't bother me a bit... But since maybe 2010 or so... My it's kind of surprising every time I start feeling a little twinge between my legs -- yaknowhatimsayin? I'd just really (REALLY!) like to be able to 'Act On It,' once in a while!

You have a very good attitude about the whole thing, Craig. And a very health perspective & outlook. I try to maintain the proper perspective, also. Most times I do. And you're right on -- Given the choice, I guess I'd rather go on a while longer -- see what develops anyway, eh? I do believe, as the song says, "there's a Better Home awaiting..." But we're still this side of sod right now; so it's important to keep things in perspective... I know.

The penile implant route? I dunno... Been thinkin' along those lines. But then, again, I have to ask myself: Whose issue is this - really - anyways? My wife's? Is is that important to her?? Or is it just my issue? I guess the answer's pretty clear. (She's still around after all.) But, still... Again -- It is what it is. Isn't it?

Anyways thanx again for your words of encouragement & wisdom. And you keep fighting that good fight... Take care

BTW, my middle name's Craig. Small world.

sephie's picture
sephie
Posts: 521
Joined: Apr 2009

i am so sorry that you have to be here. but thank you and sundance for posting so honestly. i am female and have struggled physically and emotionally due to pain and tearing and inablility to have sex. i am post tx 3 years. i feel horrible for my hubby... I was wondering if it affected men also. i really know that women are much more accepting of male sexual problems so i know that your wife will understand ... i do have a patient hubby but how long can he be this patient. as you said, it is driving you crazy.... i also would not wish this type of cancer on my worst enemy. we who have had it understand, those on the outside can not even imagine what happens to all of us. most think it is like breast cancer and you can get fixed up and have a life like before the dx. hugs to you. sephie.

sephie's picture
sephie
Posts: 521
Joined: Apr 2009

i did not mean to sound as if breast cancer is easy because it is definitely not and everyone has different reactions to their own tx. so please do not think i was being disrespectful or unthoughtful regarding this type of cancer. sephie

WashedupHasbeen
Posts: 5
Joined: Jul 2012

Thanks so much for your kind & encouraging words. You're right, women *are* much more accepting of sexual dysfunction and related problems... No doubt, because of varied & complex emotional aspects of the whole issue; which men, on the other hand... well... Not so much. But yes I can tell you, my wife has been just terrific - just the Best - about the whole issue; she's just, "glad you're with me" -- even now, still, after nearly 7 years without a sexually satisfying, physical relationship with her husband. And with the full knowledge & understanding, he'll probably never have a hardon - EVER, again. I mean, I know that probably would not be an easy thing for ANY married woman to deal with; in her mid- to late-50s, under any circumstances! But yes, she is just very sweet & supportive & wonderful, about the sex-thing. And of course, actually, it's ME who's all upset & worried about it. I understand, that's probably mainly just because of the male ego thing, etc; but I'd reckon there's not a formerly active (but now sexually useless) man alive, married to a reasonably attractive wife, who wouldn't like to be able to get it up for her -- and JUST *for her*! -- if he could. Yaknowknowhatimean?
And I believe, you're also right on in your assessment the NO ONE who hasn't had this form of ca can really imagine what it's like; the hideousness of it all -- and the ON-GOING hideousness of it! -- Although of course as we all know, 'there's no 'good' place to have cancer!' This is not in any way to try to make anal ca patients into any sort of 'Special Group'; but honey - you & I KNOW - It Is What It Is!
As for sexual relations post treatment from a woman's perspective - I can't imagine! All I know is, since that laser beam fried my gonads -- until relatively recently; like in the past couple of years or less -- I've had almost ZERO libido; to match my Absolute Zero penile performance potential! Fortunately (?) some of that has come back; so at least I'm able to express concern & get interested in sex... But it's been a long, mostly boring mostly disheartening process. And meanwhile, I know my wife would really like... well, you know. So I've been kinda interested in the idea of one of those implant devices... Now, I know our situations are different & all that, but from your perspective as a woman who's "had it," & is suffering serious sexual side effects from it... Ahhh, never mind; it's apples to oranges. Sorry. Thanks for the response anyway. Praying for you. Take care of yourself sephie.

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

had to think about this before replying..... not very comfortable with this subject but feel the need to respond, so here goes...

From a womans point of view:
love does not equal intercourse. Love is taking care of each other, understanding each other, being at "home" with each other, just being comfortable. Big hugs, and love yous go a really long way. For the most part this is what a woman treasures in her man. And that is Treasures with capital T.

I DO understand where you are coming from though. That is the closest you can get to a person emotionally and physically. You feel less of a man/woman when cannot fulfil your own or partners needs/wants. I know I did and sometimes still do. (GOD bless him, my husband and I talked about this and he told me that our life together was nothing to sneeze at!) I know I have no hormones left after chemo/rad so MY feelings are more
longings for yesterdays gone by! The closeness etc, etc.... I don't know much about mens hormones after treatment, but this is the way I feel. God bless you and thanks for posting. LOVE to hear from long time survivors and know that someday I will "ponder" things other than the next scan...

As for washed up has been? YOU are a SURVIVOR. Nothing washed up about that!

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Lorikat, I so much agree with your 'womans point of view'. So very much. Ain't The Man, I'll just bet your wife loves you more than ever, but I do sympathize with your issue. Sorry I don't have any suggestions, but Sundance has given some good ones. I hope things work out. And keep in mind that you are every bit the man you once were - and then some.

WashedupHasbeen
Posts: 5
Joined: Jul 2012

Rose - Thank you. Your kind words & encouragement actually brought tears to my eyes. This whole subject, you know, is not a'tall easy for me to discuss/process -- with *anyone*; just the hideousness of the whole disease process & aftermath, in & of itself, is not something that can be discussed - properly - with anyone who 'doesn't know.' ...Let alone, the sexual ramifications! Of course I'd heard (years & years ago) ago problems men have after treatment for prostate cancer... Never really thought about it. Didn't mean jack to me. Never imagined I might one day be the Lucky Recipient of the same form of treatment; and then some! Yes I praise God, that He's seen fit to keep me this side of sod (for now); and I fully understand, the sex thing is mainly MY issue/problem; not my wife's. (She's always, "Just happy you're with me.") But still. It is what it is. ...And, it ain't what it used to be! :^{ But, thanks for your warm & sweet support.

z's picture
z
Posts: 1249
Joined: May 2009

I'm sorry for your situation, and have no idea how hard it is for you to live with the thought of not being able to perform for your wife. I know you probably realize there is a lot to say about foreplay for a woman. I'm sure you know what makes your wife happy, so I hope you will not stop the intimacy, and maybe it will trigger something in you. Lori

Phoebesnow
Posts: 447
Joined: Apr 2011

Truly there are many ways to satisfy the wife and reestablish intimacy. Orally, manually and who knows where that might lead for you. Try some sex therapy books for ideas. There are also shots that can be used. Check with the disabled community. Remember the movie Coming Home. Talk to your doctor. There are many devices. I am fully functioning, it took a long time to recover. I still have the shedding of the skin but it is not painful. No matter what keep at it and something will happen for at least one of you.

sandysp's picture
sandysp
Posts: 771
Joined: May 2011

We don't often get to hear from seven year survivors since this is such a new board. That was encouraging. I have been depressed about not having any sex drive also. It's one year since last tx. I am seeing a pelvic PT for an evaluation on August 10th. Joanne has had good results with that. It could be my blood counts however, which are still abnormal and my immune system is sort of chronically making over-kill with fluid in the inner-ear and elsewhere type decisions about the atmosphere which make me weak and even a bit disoriented. I don't know how much this has to do with hpv or cancer or just my profile in general as being an adult asthmatic. Anyway, I am not feeling very sexual to put it mildly. I am 62 however and made up for a lot in my 20s to early 50's:-) and am still married to my third husband after seventeen years. I wish he could experience more of what I had to offer earlier in life. He often mentions how much he misses the old me. So do I! But neither of us are the sexual animals we were when we first met and I guess acceptance is truly the key to happiness. I will continue to fight to regain some sense of that part of me we miss so much, but still try to be grateful for the life I am given today. Thanks again for joining us here. We needed to hear from you. What a moving post. I truly related.
All the best,
Sandy

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