Returning to a sex life after recon

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21

SuperSue

With respect, if we were at a level where a smile was a big deal we wouldn’t get much further or at least not a far as a “fumble” because there would be nothing or very little to fumble with! Unless of course one had made it clear from the start that one was mutilated, had had an amputation and did not have the machinery etc. etc. If the other then declares he/she has a penchant for single breasted or breastless women or loves the feel of a silicon implant under the skin, cares nothing for nipples and their feel, their reaction then wey hey, we’re off, laughing all the way to bed, the sofa or whatever.

Don’t be sad at our honesty, don’t suggest going back to basics and do not tell me, as my BCN suggested, that I still have the equipment contained between the top of my thighs and my waist!

I know everything you said was well intentioned but we are not teenagers, we are seriously minded, mature women and some of us have many years of happy marriage under our belts and have found this mutilation to be a profound and cataclysmic assault on our lives in general and on our intimate lives in particular.

And this is NOT about body image; it is about our BODIES. The sooner the “image” business is wiped from the leaflets etc. the sooner we might progress.

22

Wow - what a can of worms this thread has opened up. I want to thank all - Irene, Sno, Regina, Mazaroo, Peggysue etc for being so frank and for expressing so much of what I am feeling and thinking and not knowing how to deal with. I agree that the BCC leaflets are coy and unhelpful - if anything they just serve to make me feel more alienated as my experience and it seems the experience of others is so far from what is written in these pamphlets.

The idea of having couples counselling is one I have broached but again - contrary to all the glib advice to contact your local branch of relate where they will sort it all out - this is just not an option for me. My husband does not have English as a first language -and despite enquiries I have not been able to find someone who does this work and is fluent in both my language and his which I speak with him at home - this is an essential requirement in getting someone to communicate it seems to me. Second - the very idea of it is not even up to discussion as he just says that I am the one who needs therapy and when I sort myself out then our relationship will improve - implying that if I have regular therapy he will fancy me again - which is so obviously ridiculous - it just makes me want to scream. He had therapy for a couple of years in his own language a few years ago and in his mind he is completely sorted - on top of things - back in control - comfortable with his psyche - but this is such utter rubbish. He just hangs on for dear life - and anything I say which touches the truth of what we have been through - what I am going through - just enrages or irritates him. He also thinks that having this experience gives him the right to constantly tell me what I am thinking and feeling - that my ‘paranoia’ is ‘self destructive’ and my ‘aggressivity’ is making me unattractive bla bla. He just seems to be making it up half the time. All conversations seemed to be turned round into anger - I feel there is a wall between us that was never there before.

My own body image is not great - despite having amazing surgery and having breasts that look like breasts - although there is no sensation in one of them - but the worst is seeing me through his eyes - where I see no passion, no excitement - just some kind of tolerance. I’m obsessed with looking at other couples - in the street - and wondering whether I just have to stick that huge part of my life in the bin. I am 45 but feel as if I may as well be 20 or 30 years older - that my life has fast forwarded into old age.

I also feel he must be sexually frustrated and just somehow dealing with that - he says he is not having an affair and I completely believe him - I just had to ask as it doesn’t seem normal to me that a man can be happy going so long without sex. I am sure that this does not help his anger and anxiety.

I also cannot understand the lack of understanding about the trauma of losing a breast which has to be on any level an act of extreme mutilation and if men were losing their sexual organs would probably be treated as post traumatic stress disorder.

I was at one point thinking that if I could lose the extra weight that would help but I’m at the point now where I don’t even care because I don’t think that will change anything. It’s a fundamental shift in perception which I guess is what all of us are talking about. We are not the same. I can’t help feeling resentful that he doesn’t recognise the enormity of what I have been through and just be looking at me in awe at the strides I have made on getting my life back together - and keeping everything going for the children - and working and seeing my friends and taking up adult ballet for gs sake - and not breaking down every time I hear sad news from cancerworld - or have a 3 month check up and have to wait for results. Why doesn’t this make me more attractive as a person? My husband’s mother was a very long term breast cancer survivor (35 years after an initial poor prognosis, full radical mastectomy, hysterectomy, chemo in the 1970s etc) and this does not help as I seem to have replaced her in his mind. She never got over the shock of it really - and really put the rest of her life on hold. Can’t he even admire the way that I am not giving in - that I am fighting to regain my place in the world?

I feel as if the person I was is dead and spent a long time grieving for her. Now I’m happy in some ways with the new me. I’m proud of what I’ve been through. I’m happy with the intensity of experience I find in small things - but I also feel profoundly lonely, undesired, undesirable and isolated.

Whether our OHs want us to ‘return to normal’ and have uncomplaining sex when we have no libido and no desire or ‘return to normal’ and just be the person we were before - and therefore desirable and attractive - maybe comes to the same thing. They want us to go back to something we can never return to - and they have got to accept and understand that - and if they can’t then decide what they are going to do about it.

Sorry for rambling on and on. It helps to know I am not alone…

23

Hear hear Regina, and Manou, what you say is deep and spiritual, and a worthy man must love you for all of that. Or at least, perhaps eventually when he has worked out his own issues.

Frankly SuperSue, I am sorry to have to say that your remarks strike me as glib in the same way as the leaflets. Would that we could just woo each other again with candlelit dinner and winsome looks. The issues are far deeper than that. We are not kids.

Our bodies have been violated (OED: transgressed, infringed, broken in upon) by amputation (OED: cutting off of a limb or protruding part of the body) which has mutilated (OED: injured, made imperfect by depriving of a part) a part of our bodies which is part of the normal sexual anatomy, and is both erotic and erogenous, both for him and for her (she likes to show, he likes to see, he likes to touch, she likes to be touched, and so on, and on - sex being something that two people do together and ignoring, because it does not apply to me, any variants on that!) and which sexual anatomy is for many people a source of exquisite joy (just go to an art gallery, just go to the theatre, just look at a film, read a novel, just sit outside and watch people…) and a very important part of the sexual encounter which culminates, often, in penetration, etc. but penetration and what follows is not the goal, still less the whole, of what sex is about - hence my comment about the vibrators above. Obviously. So we have a real, irrevocable loss. The natural response to that is grief.

For myself it is a greater grief than any other I have known, because it is for the loss of myself, of my life, of my future, of my youth, my partner’s loss of me, my children’s loss of me, loss of hope…my identity as a person is not as a person first, or fundamentally, and a woman second, or superficially. It is certainly not as a function or a role - whether as mother, or as worker, or wife, or anything else. I am a female person, my sexuality is my identity and that has to do with how I relate to people, to the world, to life, and of course to those closest to me, and of course, fundamentally with my most basic and fundamental relationship with my partner. That has been disrupted for us, not just him, not just me, but us. Damaging a person’s identity brings with it naturally the question whether I want to stay alive at this price - the cost of my very self. As naturally, perhaps, as the question whether I still want that vase if it is broken and doesn’t work as a vase, lovely as it once was. Basic existential question. What am I, now, now that I am not what I was, what use am I to me, what can I be, what do I want to be, is it worth it? Working that out, if it can be worked out, is not likely to happen overnight. Or over dinner.

sno

24

hi all …reading all our posts is very sad …I too often wonder f my husband has found satisfaction elsewhere …two years is a long time without sex …as you say even if the urge is there the thought of the lump of scarred flesh that was once a thing of beauty and femininity being exposed or fondled ! but why it has no feeling there is no point …i do not want to “perform” with my top half covered and spend the whole time worrying what he would feel like if he saw “it” I long for intimacy and closeness but that has gone forever …before BC i was a sexy physically attractive woman …Oh yes apparently I still have admirers …but they see the superficial me …I would never feel comfortable with how I look …just after my mastectomy i attempted to show my OH … I got a look of disgust that I will never forget it crucified me …I am not going back for a second helping …he has never since made any adviances towards me in two years not even a kiss !! maybe he just feels pity and is still here cos we have been together over 30 years I had to write him a letter to tell him how I feel that was a month ago he has read it he said nothing I am so unhappy and trapped but what choice do I have ? xxxxxx cheers for listening xxxxx

25

How I so identify with this. I have not had a recon and am not sure if I can face further surgery especially as I have never been given very good odds. I read an article the other day that said a cuddle, a kiss means so much to a cancer patient. Sadly I do not get this. I have been married 31 years and am told I am still attractive. I do not feel that way. I feel disempowered, mutilated and washed out with it all. No help is given for life after bc. Is this it I ask. I am only 57. Have I been slashed, poisoned and burned to feel this way. I try to be positive but it is so hard. 12 months later I still do not have a decent head of hair after taxotere.

26

Hubbies are not very good at this stuff???

Don’t give them an excuse, please. They MUST have been good at “this stuff” once upon a time or we wouldn’t have married them would we? Would we???

Sorry, saying they’re not very good is far too forgiving and gives them a very easy way out. Might as well put them in with the elderly and call them “concessions”.

I think we’re taking a step back in time here. Next we’ll be lying back and thinking of England … I’d rather remain celibate.

27

Just going to refill my glass of white as need the ‘fuel’!

I am sooooo so glad I came back on here after a long break. I thought I was ‘ok’ self reliant and strong. I now know I am, to a point, but to hear you gals on hear saying the things I am thinking means so so much to me.

Supersue, sorry, you are so wrong, for us at least. You are either VERY lucky, or need to get a grip on reality. Both of the couple need to make an effort, it is not one sided and if I get a haircut (now I have some hair) buy a new outfit, book a table and taxi and bring the cheque book and all he has to do is turn up, smile ocassionally and show a little affection, and he can’t even do that, it looks to me like wooing is def off the cards.

I agree with Manou68, we too have a wall of anger and if we no longer have sex and he is faithful which I think he is, how on earth is he coping? He isn’t, he hates me most of the time. He doesn’t say in so many words but I am so unlike the person he married. After BC I have needed to become very strong, it’s a coping stratagy. I also feel let down that he doesn’t see the strides I’ve made to ‘cope’ and return to normal, work, life, kids, grandkids, etc. Friends, family, even acquaintances say I am doing so well, OH says jack s***.
I am living with an enormous cloud hanging over me but it very rearly rains, it’s a storm cloud brewing and he only notices when I ‘lose it’ after one more shitty comment.

Snowhite, I agree, penetration for me was never the ultimate goal, the forplay was usually the best bit, and even with me ‘making an effort’ to fulfil him, that bit got leap frpgged in order to get the uncomfortable and painful bit over with asap.

I do feel I have lost my future. I feel very sad that I no longer have a spring in my step, I too feel 'what use am I as a sexual female being?

Maz. I have also resorted to writing him letters. He also has not responded. I have then brought them up and he is uncomfortable and we end up rowing, so I that’s a pointless exercise that I no longer do.

I agree with Regina. I am resigned to being celibate, don’t miss sex, do miss cuddles. But if I was single, none of this would be an issue.

We had a separation last year and we did miss each other and we both wanted to make it work, but he is so so angry all of the time that I just hate the negativity that engulfs me on a daily basis.

Having said all that. I still love him, because on a good day I see glimers of the old him, pre BC, pre mutilation, when sex was an importantant and valuable part of our lives.

So I would say yes, sex matters.

Irene

28

Hi Everyone,

I am sorry that I’ve offended people. No intention of being glib or unhelpful or demonstrating a lack of grip on reality or causing anyone distress. You’re probably right about all these things. Clearly my comments were unhelpful,inconsiderate and poorly thought out and so I apologise unreservedly.

Best wishes,

Sue

29

Thanks for the apology. I have been there myself, it can be hard to judge the mood of the thread, and this one def got a few people sparky! It is a very emotive subject and one that may be very allien to some so it’s understandable that others may get it ‘wrong’. Thanks again.

Irene

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Hi Sue …dont feel bad as Irene says it is a difficult one to to talk about unless yu are there !! believe me it is not the most pleasant of places to be …my OH has no interest in me sexually at all as previously posted .he has just been promoted and now works at a new office where “” all the girls are well attractive " and probably all in tact methinks …well lucky him he must be in heaven !He doesnt seem to think how hurtful a comment like that is .
I do often wonder if he seeks or is getting satisfaction elsewhere,which of course is certainly not an option for me …AS IF! He used to be so jealous and possessive of me before BC hated anyone even glancing at me …but now .not at all cos he has categorical reasurrance that a)No one would want me in my current state .b) I would never be able to embark on that sort of relationship anyway for obvious reasons.c)I am no longer attractive

So I go through the motions every day …work ,housework and mother stuff…we get on but like housemates which I have resigned myself to the fact that this is it ! This fecking disease has a lot to answer for …and not everything is in the leaflets !

Love you all for being there
Maz x the unsexy one

31

Also like to thank you Sue for the apology - I don’t doubt I put my big feet in it too often myself.

This might be a case in point: I just don’t think this will go down well, but it is a thought - don’t know what others think about this, but have been considering dragging my husband to relationship counselling because, with a good counsellor they can help men to discover and articulate their feelings and really can get couples talking again, constructively. It has been known, it can be done.

I know it is not always going to work, and I know a lot of men would no more see themselves resorting to this than to wearing women’s underwear, but I think it is worth a shot. I think it is worth pointing out to them that they may have to reconsider what they think is acceptable, and how much they are willing to mend the relationship, and how broadminded they are prepared to be. You can also have relationship counselling on your own and maybe drag them along later.

And I think that men have a responsibility in a relationship to participate in the work needed to develop, repair and sustain it and I personally am not interested in a man who is unwilling or unable to do that when hard times come. I can forgive if they find it difficult; but not if they won’t budge, won’t talk, and are making you do all the emotional work. It could be that this experience is one which brings out what kind of man he is, what kind of relationship it is, what you want, and whether, and on what footing, it has a future. I cannot go on wanting from someone what they cannot or will not give, and if I need things he won’t provide then I will make my own arrangements. I will take the consequences.

My problem is that my partner is a totally decent human being. But I have changed. Like Irene I have become - in some ways - stronger, to cope. Before I think I was too dependent which suited him and now somehow I have grown up (just a bit) and he needs to adjust to that, but frankly I don’t think he likes it, and I am wondering if it is a change too far which opens a gulf that can’t be bridged. I am no longer sure I want to be with him because I see him with new eyes. He has done nothing wrong. I just see things differently, and I can never go back to being who I was.

Maz - I feel for you over that crucifying look. He sounds like a guy who wants to be with an attractive woman, and for whom that is part of his self-esteem, and he is having trouble facing the fact that the woman he is with is not now that fantasy. But that is shallow and if he is to meet the challenge of real life, rather than remaining that immature kid, he needs to ask himself what he wants from a woman, what he wants from you, and what he has to give to a woman, what he thinks he is giving to you, what use he is in this real world where stuff happens and beauty fades. Would he eventually have discarded you as you got older anyway? And when he is old…? Perhaps he is thinking about what he has lost, which I think is entirely legitimate, because he has suffered a loss, as we have. But so have you, and he surely also must see and feel your pain. Sorry, I hope I haven’t been too frank.

sno

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Here, here sno!

I know from first hand experience that counselling does work.
Like you and many others this whole experience has changed me.
I used to be so laid back and have opinions but kept them to myself but not any more!! somebody once told me that having cancer gives you a licence to say what you think and this has been so true for me.

My husband is my absolute rock and worships the ground I walk on and would do anything for me if asked but I never asked. Being at home I believed it was my job to clean, wash, cook, bring up the children go shopping do the gardens etc even throughout treatment but one day it hit me!

What on earth was I doing? - here I was with a potentially life threatening disease and carrying on as normal and things had to change and boy was he shocked! All of a sudden his lovely housewife decided to voice her opinion in no uncertain terms and he didn’t know what to do!

He said that he didn’t like how I had changed since cancer - even tried to put it down to my early menopause until I made him realise the error of his words! I told him the only change was that I now didn’t care if I upset people by saying what I thought!

Well after 24 years of being the dominate one it did cause major problems so I bought him a plane ticket and sent him away for two weeks to think about our relationship - when he came back I did a Shirley Valentine and got on the next plane out of the country and left him in charge of the kids and house for the first time in 24 years and that nearly tipped him over the edge lol!

The upshot was that when we were both home again we realised that we needed help - I was bitter and so was he so we went to Relate - something I said I would never do but gave it a go and it was nothing at all how you expect - they got me to tell hubby how I was feeling about cancer our relationship, life in general etc and then he did the same and from that they then picked up on areas that needed working on and gave pointers into how to get back on track - and it worked.

We have always been very close but I always felt taken for granted but now he helps out 50/50 and I am now able to ask him to do things for me which I love! We both feel lucky that we were prepared to fight for our marriage and came through the difficult times absolutely in love with each other and stronger than ever.

So sno, go for it - it has to be worth a go doesn’t it?

Clarabelle x

33

Sorry, forgot to say…
We went to relationship counselling only but you can also go on and have sex therapy for couples afterwards if you want to. They like to get you talking as a couple before embarking on that one though!
Good Luck
xx

34

Hi sno …no you havent been too frank … I could never see my OH going for that and its true what you he probably wants an attractive woman on his arm …just let me say I am still that attractive woman so i am told look good for my age blah blah blah but we both know that this is not true ,maybe superficially .yeah .
So back to the story …the promotion …the new office… the fit women …he is now buying a new car !! not just an ordinary car areal flash powerful eyecatching job ,phallic symbol …a veritable babe magnet !!! whatever you want to call it …I have never seen him want something sooooooo much and my guess is by the end of today …it will be almost his !!! I think that he is definately out to impress someone and it isnt me ! he knows me better than that the only positive side is that he is almost bearable to live with as the last year or so has been dreadful I have been so close to leaving but having no money of my own to speak of and my daughters wedding in September …It wasnt the right time if there ever is one …so I wrote him that letter telling him how I felt …still no comment other than he has read it …so here I am …sexless …unloved and mutilated … no I dont feel sorry for myself I am just angry at the carnage this bloody disease causes and
am so jealous of you ladies who have loving supportive husbands sorry for ranting seem to have lost the plot this morning …but thanx all for being here as it truly does make me feel better .xxxxx

Maz …the unloved x

35

Oh Maz,
you can do lots and I would start by rocking the boat - get dressed to kill and go out on the town and enjoy yourself - you are still an attractive woman and I have no doubt that you do have admirers - there are men out there that would still want you warts and all - maybe you need to show the other half that this is the case - It will go one way or the other - he will be upset and jealous and want to talk or he will tell you he doesnt care and announce he is leaving - either way it should stir up a response! and stop with the unloved, unsexy sign offs it does nothing for your self esteem - believe in yourself and believe it when people compliment you - you have lost an important part of your body but not all of it - we are much more than breasts!
Clarabelle xx

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I am only joking with the sign offs !!! I really dont know if I can be bothered to even get him interested dont even know how I feel about him any more too much of an effort and as for having admirers ??? they arent very forthcoming haha :slight_smile:
Thanx for taking the time to reply xxxxxxxxxx

37

I’m going to be depressing and I hope I do not upset anyone. I am not much more than my body, I am my body. And the being drnssed to kill is all veryw ell but trust me, the minute you tell them you have had bc and a reconstrcution the look ofhorror is evident and they are in no hurry to seal the deal.

I wish there was a way back but there isn’t and the truth is some of us, despite counselling and trying all tho tricks will not be able to resume normal sex lives.

L:ove to all

Jane x

38

Jane I am 100% with you on that one …thats my lot …the way it is xxxx

39

If the man is put off by the body at that point then he is looking for a body not a relationship. Moreover, and in a way it is not surprising, he wants what he thinks of as normal sex and it has never occurred to him that he could get involved with someone who is a little different. He, I would imagine, would never contemplate a relationship with a disabled person, a wheelchair user…etc. however deep and interesting she might be. I can understand this; if you are not disabled yourself, you expect to meet an able-bodied partner. You don’t see yourself in any other way. Disabled people certainly know all about how other people see them…or don’t see them at all because they are not looking at them…And now, here we are, finding ourselves in rather the same boat.

However, this leads me to the conclusion that such a man is considerably more interested in his own pleasure than anyone else’s, and isn’t likely to form a lasting relationship. I think it is worth, for that reason, not disclosing about yourself too early in a relationship, and not embarking on a date that is based on the understanding that sex is part of the deal and is going to start pretty soon. That may give you time to assess whether the guy is man enough, and human enough, to sustain an interest in you because you are you, and whether he actually cares about your feelings and not just his own, and whether he has the generosity and open-mindedness to embark on an adventure into new territory…and while it feels terrible when you are alone and don’t have someone, there are many women who have found new partners after bc, and also women who say the sex is still good, and mean it(that is the bit I can’t work out, but it gives me hope). So if a guy can’t stay the course, he has failed, you haven’t. Be glad you’re shot of him. How was he ever going to be any use to you?

Maz it is terrible that your man could do that to you when you have been through so much; and terrible that some woman could do that behind your back, presuming he has told her - does she think he will stick with her if he can do this to you? My gut reaction is to think that if he can afford this fantastic car, and this other woman, then you should be reasonably comfortable after the divorce! But perhaps that is too drastic, and might be the wrong impression anyway - but if he is doing this because he feels cheated of ‘sex as we knew it’, normal sex, good sex, whatever, then somewhere along the line he has to recognize that you too feel cheated of this, and more so since it is your body that has been violated, and he has to feel and show compassion for you - not pity - a recognition of what it feels like for you, how it might feel for him if he had his penis amputated or prostate cancer or whatever. Whatever becomes of your relationship, whether it gets through this or not, he must if he has any human decency, take the time to think about how it is for you, and have a heart and say so.

No I don’t think we will ever have normal sex lives. But maybe we will have sex lives - and straight after my op, before it, second rate sex wasn’t good enough, the whole thought was horrific to me, so I guess that is what these men are thinking too - but now, I am thinking that maybe I could have an abnormal sex life and maybe that would be good enough. Better than being a female eunuch. Second best, but a step up from where I am now. But I don’t think the sex can be any good if the relationship isn’t, and also not while we are still traumatized by the ordeal - so just those two great hurdles to jump, and then everything will be hunky dory!

sno

40

Hi Sno … I am not certain that there is someone else …just feel like there is if you know what I mean …anyway I have put up with a lot worse xxxxx