I have found the BCC leaflets on the subject of sex of limited value. They are coy, euphemistic, and baulk at hard truths. Get that out of the way right at the start.
Sad about men who don’t communicate. They have feelings, have a right to their feelings, have a right to privacy if they want it, all that stuff, but why do they have such difficulty talking about sex to the one they do it with? And about other things. Do they not have responsibility to themselves and to us to communicate, as best they can, in an adult way about how things are with them, and between us? Do we not have a right to require that of them - I think one could let a person off too lightly from their responsibility to communicate as best they can with the person closest to them: even if it is to say something like, “I’m mixed up about it, hurt about it, and don’t want to talk about it just now” - to which I think one would have a right to reply to the effect: “okay; please will you review the situation with me in a few weeks time so I know where I am with you because I need to know what is going on.” I speak as one married to a man who seems to have no access to his inner life and I have to do it all for him, which is arduous, but if I didn’t do it there would be no conversation between us at all and what would the point of such a relationship be - especially since there’s no sex! the only point of our relationship at the moment is - pragmatic.
Personally I can’t do sex just to fulfil his needs, and he doesn’t want me to fake it. I do not consider sex a duty, or an act of charity; to me it is about communication, sharing, and has to be two-way. So for me that would appear to be that. But I want to want sex, and if my libido does not return then my treatment was a waste of time and I would rather I had just got sick and died, intact.
But remember that breast cancer treatment, including recon, is an appalling violation of our bodies, and I would think it natural to respond to that by wanting to reaffirm one’s privacy and right to deny access to our body for a time after treatment - quite a long time perhaps, and other people have to respect that, as we would them. If they are taking it personally, or have a problem with that, then could they not say, so we could explain? They can understand that we aren’t withholding sex - out of spite, or power, or whatever. Also that we are as distressed as they are at the loss and the damage to ourselves and our sexuality and recognize it as a loss to them also. Though personally if I never recover then the treatment was pointless - a treatment that makes you feel dead seems no better than being dead as far as I’m concerned. But - time, I think is needed.
Secondly, and this is where I think BCC and every other source I know of, fails on ‘sex after bc’ - I think sex is going to be disabled sex. I’m allowed to say that, if anyone is getting offended about it, because mastectomy makes me an amputee, my sexual machinery has been sabotaged by that operation, and that makes me disabled as far as I’m concerned, and any sex life I’m going to be able to have will be one adapted to this new and different and sexually handicapped body. It is sexually handicapped because breasts are part of sex, I would have thought obviously but perhaps not, and it is about looking and touching, they are erotic and erogenous - hence the advice to keep your upper body covered misses the point for me - and give pleasure to both parties, it is not just about him - and the damage to that part of the anatomy quite obviously disrupts both aspects, and in my view there are no substitutes, and the advice to concentrate on ‘other erogenous zones’ is whistling in the dark because basically, we have lost a very important part of the machinery. Or why are we having this conversation? I am just hoping that somehow I can salvage something from the wreckage, but at the moment the spark is gone completely, and this wreck just won’t go.
Re. ‘disability’ - I’m speaking for myself, and I have a right to say how I see myself, and I offer these thoughts for other people’s consideration. If anybody out there sees their own predicament differently, that is entirely your right, but don’t require me to see mine your way or stipulate the language I may or may not use about how I see myself - sorry but people get tetchy over the word ‘disabled’ but I uphold my right to use it. That being said, if you see it differently and think you can offer me something that might help me in my situation, then please say.
Well, I hope nobody takes offence here, and I apologize to anyone who has it is not meant; I really have thought a lot about sex (when you can’t do it that’s all that’s left!) because it is the subject closest to my heart and bc has wrecked me and I am devastated and I don’t want to be humoured or patronized about my loss, and I do want to talk straight about it but only because I believe that doing so gives our best hope, if hope there is, of recovery.
sno