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Sex and cancer. The dirty talk - from intimacy to roommates

wondering44 Member Posts: 261

My husband and I had a strong intimate relationship before cancer. I understood we would have down cycles in our marriage, but breast cancer brought a new definition into my home for the word "downcycle."

After my diagnosis, my husband and I discussed the expected changes to our intimacy. We knew it would change, but we didn't realize how much. What we forgot to do was address it together before we let the bottom fall out from under us.

My husband's patience and support: He had not said a word of blame about our lack of intimacy this past year. He has waited patiently to hear a "hint" from me that I wanted to have sex. He got busier in the house to occupy his time. He smiled and kept quiet to let me do my "cancer" thing. And yes, I needed every bit of that from him this past year to go through it. I admired him for allowing me to endure the stress without pressuring me for anything, including sex. I loved him more for it.

The day my "dirty" came knocking: I felt my hormones surge inside my body like a speeding car racing out of the pit to get back on the racetrack. My husband's schedule provided him with coming home from work for a week that night. I expected we would get back on track to our fabulous "dirty." Finally, we would get our "intimate" back. Well, my expectations did not go as I planned. After a few days and some nitpicking comments, I finally asked him what was happening inside his head (we don't do that to one another unless we are frustrated at something else we haven't talked through) to help me work to meet his needs.

The "dirty" talk: He said I'm not interested in intimacy with him since cancer. That was like a bullet through my heart. I asked to step away from our talk for a bit to consider his words. I promised to return to address it, but I needed time to think. At first, I felt anger because I didn't have control over getting cancer. How could he blame me for not wanting intimacy in our relationship over something I had no control over happening? I picked up my phone and took a long walk. I returned and went back to talk to him. I asked him if he wanted to spend 20 years in a relationship without intimacy. He said it would suck, but he could see about getting something from a physician to lower his testosterone to help. Yep, I married THAT guy. Talk about a blow to my little bout of angered thoughts I had just had in my head.

The day after: We didn't get back to intimacy after talking. The frustration built more as the hours passed. My husband was busy doing household duties before returning to work for a week. I understood he needed to get a lot done. I followed his path of patience in letting me be busy without pressure for him to have sex, as he has done for me so many times in the last year. How unfair is it that I would expect him to drop everything in his busy work to have sex now that I wanted it? He wouldn't do that to me. That decision brought us to sleep in different bedrooms that night (something we don't do). When I addressed it, he said he thought I was asleep and didn't want to disturb me. I said I thought he had things he needed to get done and didn't want to demand him to drop everything because I wanted sex. We both agreed that sex was more important than the thought processes that got us to "no sex." Off to work he went for a week, and the "no sex" and nitpicking remained.

The awakening: He was at work. Talking while he's at work is a challenge. Sometimes he can't talk due to his job duties. Sometimes he works nights and sleeps during the day. I work days and go to bed early. One misunderstanding over something insignificant brought us right back to an argument. We both found areas to make small jabs at one another over where he was wrong, or I was wrong. Finally, I picked up the phone and called him. For me, it was time to ask, "WTF?" He answered his phone and ended his meeting to talk. We bickered about our misunderstanding for a bit.

I finally asked him, after some silence, why his words tonight were harsher than they had been during our entire relationship. I let him know I have noticed that change in him lately. I let him know I see myself doing the same thing. I tell him it isn't healthy for us to go down this path. I say I know couples who went down this road, and it got worse, leading them to divorce. He acknowledged that he understood our course and said he didn't want to get divorced. He asked me if I wanted one. I told him I did not want anything in a relationship other than him. He said he didn't know if I still wanted him because I did not want to be intimate with him anymore. He said it wasn't just the sex. He said I don't touch him anymore, even without sex. He said I neither wanted him to touch me nor did I touch him outside of sex. He said he didn't know his role in our relationship when he's at home other than cooking, vacuuming, and washing clothes and dishes. I tell him I still wanted him sexually and intimately. I tell him I still think he's sexy. He asked again if I still wanted to be married because we weren't having sex. I tell him I wanted him more now after cancer than I did at the start. I tell him I am grateful to have someone who dropped everything for a year to put a smile on his face to let me ride the cancer rollercoaster. He told me he didn't know I felt that way toward him. I tell him I'm afraid I wouldn't want to have sex again and what that would do to our relationship. I tell him I'm scared that if I didn't want sex again, he wouldn't want to stay around for twenty more years to deal with it. I tell him I am scared of what would happen if I lost my "dirty" again during my next year of surgery and five years of AI prescriptions. I don't get to control how my body would go through any of it. I want us to both have satisfaction in our relationship. I want him to find his role as a man in our marriage. I don't want that role defined as "roommate."

Trying something different: After our "awakening" talk, we agreed to make it a priority to work together to talk and find our intimacy. We decided to schedule it to break our newfound routines of prioritizing everything else. We decided to schedule daily times to talk (the foreplay) about what is in our thoughts to help us both understand each other. We scheduled sex. Yep, we did a schedule. The "reminder alarms" are set. We have to drop everything and get to it. I got the task of requesting sex at the drop of a hat from him when my hormones were in gear. He got the job to tell me to drop everything I am focused on on my to-do list to make him a priority and let him know he is WANTED (not sex-related).

Cancer affected more than the patient: Yes, I am the one who got the "f" ing cancer. But my spouse got it too in a different way. While I go through all of it, my spouse goes through his too. Does it ever end, and will we find our way back from it?

What did you do to work on it for others out there who had intimacy issues after a cancer dx? I know I can't be alone in my intimacy and sex CRAP after cancer.

My therapist takes weekends off. :)


  • moderators
    moderators Posts: 8,178
    edited July 2022

    Great topic, wondering44! Thank you for being so open, raw, and real. For sure, breast cancer affects all parts of life, from the intimate to the mundane. Good for you working to improve and maintain your relationship through this roller coaster. It's not ever easy for everyone involved.

    We're sure this thread will take off, as so many have similar experiences. We hope you get lots of insight from others soon.

    --The Mods

  • wondering44
    wondering44 Member Posts: 261
    edited July 2022

    Thank you, Mods.

    Getting cancer is a rollercoaster I certainly did not want to take a ride on. However, I got one of the lucky tickets to hop on it. How right you are that it affects all parts of life and everyone involved. I wouldn't have minded a good read on it in the first nine months, like, What To Expect When You Are Expecting Breast Cancer. :)

  • stauggie
    stauggie Member Posts: 23
    edited April 2023

    I am reading this with tears. My non existent sex life is such a mess. It started even before cancer, in perimenopause. Painful sex, and I didn't know what was going on. Was embarrassed to go to the doctor to find out. Then cancer. Chemo, multiple surgeries. Fun with tamoxifen and AI side effects.

    Had a heart to heart with my husband. He is such a kind gentle man, and hadn't wanted to put any pressure on me. He made it clear that he wants me sexually as much as he ever did. I cried because I feel like a Frankenstein with fake boobs that have no sensation, and a broken vagina. I ordered Revaree and Ristela, and started that yesterday. I really hope it helps, because I miss sex, and miss wanting sex, and the intimacy it brings.

  • sunnidays
    sunnidays Member Posts: 160
    edited April 2023

    There is a funny poem about a cat who gets neutered, he goes on the prowl after the operation he knows there is something he used to be interested in but he can't quit think what it is!

    That's what I think it's like, however, it hasn't affected our sex life because my husband is amazing and i won't let cancer rob us of this.

    My big issue is changing rooms at swimming or a spa I have to have a private changing room which gets me funny looks at times as most women are changing communally

  • wondering44
    wondering44 Member Posts: 261
    edited April 2023

    stauggie, You are not alone in your challenge, frustration, or tears. The loss of intimacy was more than I expected. It wasn't just the stress of cancer and treatments that led me away from sex.

    The broken vagina…damn, that is a hard one. I still have pain with sex, but my husband and I have worked together to minimize it as best as possible. I opted not to use any vaginal inserts because my oncologist did not recommend use because my cancer was ER/PR+. I was going to go for testosterone, but my oncologist didn't recommend it either for the same reason. I felt like I was up a creek without paddles trying to figure out how to get my sex drive back.

    My husband and I set a sex schedule. It helped tremendously for a while. However, the AI came knocking, and it was a battle for me to prioritize sex again due to an almost zero sex drive. That "f"ing AI really sucked for sex purposes. My husband and I recently discussed it again. He understands why I continue the AI even though it seriously affected my sex drive. I had to be completely honest with him about it. Frankly, the orgasm sucks on the AI. Like, you have to be kidding me; it sucked so bad. It was like getting beyond the crap cancer roller coaster ride only to find out my orgasm was broken too. C'mon?! I reminded him that I was not one to put forth effort in sex if I didn't enjoy it. I never saw much point in using myself to please a man if I couldn't enjoy the sex too. With the broken vagina and broken orgasm, sex stopped piquing my interest again. Call me selfish. My husband understood that. We are still working on it, and I do have to remind myself to cuddle and be affectionate with him. However, we have come up with a few things that have helped us.

    We do plan sex nights and add them to our calendars. The calendar takes the stress off of me of feeling bad about not having sex when I know my husband wants it since it gives me free nights of not having to concern myself with it. It also helps me build up to those calendared nights and make sure I have freed up my time to spend on my husband. I like the calendar quite a bit because I can have days off (mind free from sex worry) and days I have scheduled to prioritize my husband.

    We use almond oil for extra lubrication…lots of almond oil, lol. Even with the extra lube, I still have some discomfort. I miss those days when the only thing I felt down there was a pleasurable feeling during sex.

    I read some excellent information from exbrnxgrl on Cannabis. My thoughts…while it isn't legal in all states Delta 8 and Delta 9 are legal where I live. Cannabis is also legal here for medical purposes and is only a "ticket" up to a specified amount for recreational use. I have read that these products are helpful during cancer treatments, and I assumed that if they help with cancer and treatments, they might help with AI SEs. Hypothetically speaking, Cannabis might be a winner for a knockout orgasm too. Now, if a person was married to someone who was 100% against Cannabis products, a knockout orgasm might sway that spouse to open up to a spouse using it. While some people may not be able to use Cannabis during the day for day sex, a schedule might allow for time management to use Cannabis for knockout orgasms and fun sex with a spouse/significant other. Cannabis can = those mind-blowing orgasms lost after cancer. It is too bad doctors aren't yet in the business of educating folks that these products can be used for AI SEs and sex issues.

    And hypothetically speaking, if family members who were 100% against Cannabis products noticed improvements in AI SEs with Delta 9 and Cannabis use, they might open up to it too.

    Again, you are not alone. The cancer diagnosis was just the start of a massive pile of crap. It sounds like you have a rockstar husband who loves you very much. I am happy to read that you have someone who cherishes you through cancer. I wish you strength and perseverance in your cancer aftermath.

    @sunnidays, I am happy to read you and your husband are rolling through the sex without issue. That is amazing! Any ideas you guys have come up with would be great to read.

  • scoleman2013
    scoleman2013 Member Posts: 2


    I understand…..I am a 10-year survivor this July. I choose not to go on AI due to the side effects….but I still have no desire for sex…..of any kind…ever….I read your post and thought—wow—I went through the same thing…..right after chemo was done in year 2—it all came back—I was 42 and wanted it all the time….but then a year or so later it left as fast as it came on…so this message is probably not to help—but we are still together and we work through it. we will be married 30 years in Oct. Like you before cancer we had sex all the time and I loved it. We have now been struggling with this for 8 years—the first 2 were hard during all the chemo and the surgeries (I have had 14 surgeries over 7 years-none the past 3) but after the 3 years of recovery it was so much worse. Making sex a priority was and is still so hard….I do try, but between life and work—and I just don't want to anymore. I feel for him so much because he still wants it twice a day -every day.

    I do my best to make this happen every few days—but when I don't he goes silent-he won't talk to me for days. It's horrible—and it affects us so much—I know he still loves me—but this F-Cancer tried to kill me—I did not let it—so the after-effect is that it takes my sex life and my relationship with my best friend.

    I am at the point -I want to ask my doctors for anything that can improve my sex drive….while I realize this will not happen….they will not allow me to risk my life more just to HAVE SEX.

    So I have an appt on the 30th with my oncologist and I am going to ask him what my options are…..knowing he will not have any for me…I have to try.

    I hope you and your husband can find a place that works for you both….I know this is hard and it takes a lot of work….as said before you are not alone….there are so many of us out there going through this..

    Hopefully, someone else will post some better words of wisdom for us both.

  • wondering44
    wondering44 Member Posts: 261


    Thank you for sharing your story. It is unfortunate to know this occurs to anyone. However, it is good to know we are not alone in our "sex" struggles.

    My husband talked the other day again. I brought it up because I know it weights on mind and he keeps it bottled up. I told him I would work on changing my thinking because my sex drive would probably never be what it was. He sadly agreed with me. I told him I would redo our schedule to include "him only" romps/quickies. I explained this would take some of the pressure off me to reach a decent climax and alleviate my need to pick up the cannabis on multiple days during the week. I scheduled a couple of days during the week just for him, and in return, we planned a couple of days for me too. I have finally realized that my sex drive will not return to what it was, so I want to see if I can work my mind around other options. So sad. Hopefully, the adjusted schedule will help with this mess of a sex drive.

    I hope you and your husband find your way back to before cancer or somewhere that you are both happy with.

  • gailmary
    gailmary Member Posts: 436

    Wondering, don't give up hope that it won't come back. Your only into this 2 yrs.

    We've spent alot of "quality time" in the sack over the last 50 yrs. Did I say alot?? Finally he's slowing down! Recently I told him not to expect much interest from me cause of the anti anxiety/anti depressant that I now take. Dr wasn't willing to try a different one!. But I've had more interest lately . Surprise!

    This was all after a pretty dry vagina and a trip to gynecologist only to be diagnosed with lichens sclerosus. Yep causes painful sex too. It will never be the same but we have a great relationship and though I miss those intimate moments we still enjoy cuddle time.

    Recently read the suggestion to read a hot romance. Wouldn't hurt.