OK... here comes the question no one wants to ask...

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rsp
rsp Member Posts: 103 Member
edited June 2017 in Head and Neck Cancer #1

Now that my husband is starting to feel better after his 8 monthbattle with SCC... sex is back in the picture.  However, I don't know why, but I am very hesitant and nervous.  I feel like since I took over the "caregiver" role, that my "drive" has literally "driven away"... 

Are there any other caregivers in this situation?  I tried doing a search on "sex after treatment", but the posts I found went back to 2010.  

I know my husband is so happy to be "back in the saddle" again, and I feel like I am making things really horrible by being so leary and hesitant.  

Maybe I need a therapist?

 

 

 

 

 

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    covered in 2012, 2013, 2014, 2015, 2016 now 2017, oh my

    rsp,

    Maybe you need a saddle

    Matt

  • MMDowns
    MMDowns Member Posts: 318
    #3
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    Oh Matt! I get ya. I do. I

    Oh Matt! I get ya. I do. I feel the same way. Very hesitant. i find that if I'm honest and we talk about it he understands where I'm coming from. We have started

    to see our therapist again. It's a good way for us to navigate this new normaL. 

  • rsp
    rsp Member Posts: 103 Member
    #4
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    CivilMatt said:

    covered in 2012, 2013, 2014, 2015, 2016 now 2017, oh my

    rsp,

    Maybe you need a saddle

    Matt

    Enjoy your humor!

    Ha Ha, Matt... thanks for the laugh.  Sometimes that is the only thing that keeps me going...

  • mskitty137
    mskitty137 Member Posts: 73
    edited June 2017 #5
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    Rsp, I am right there with

    Rsp, I am right there with you on this. I think a big part of it is we settled into a caregiver/patient role and of course romance took a way backseat. Also, for me, he is still so frail looking due to all the weight and muscle loss. I'm actually afraid to hug him sometimes. 

    Susan

  • Tonita
    Tonita Member Posts: 197 Member
    #6
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    How would you be feeling

    How would you be feeling today had your husband not survived? 

  • soonermom
    soonermom Member Posts: 155
    edited June 2017 #7
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    It is hard

    Every couple has to navigate this area and like most things with this beast of a disease, it seems hard and different for each couple.  i read this and think you are lucky, which I realize we are all both lucky and unlucky.  We are so colored and limited by our own perspectives.  My husband just sees himself differently and is trying so hard to stay alive and healthy and do basic things like eat that he can't even think about it.  I miss it and and still see him as attractive.  He is struggling with feeling he is not what he used to be.  He is frailer and different but I still miss our intimacy.  You are right, no one wants to talk about this.  HNC patients that are married or have involved partners have better outcomes with the disease but it takes a toll in some ways.  I am sadly blessed to have a friend with a husband who also has Stage 4 cancer.  She is the only person I can talk to honestly and know she gets it and won't judge me.  On TV, everyone living through this gets so close and has tender moments all the time.  It has deepened our relationship in many ways but it has been a real challenge in other ways.  One of my friends with a daughter with cancer told me right away that cancer changes your loved one, your family and you so get ready to have to navigate some rocky waters that are about more than the disease.  True words.  We will figure it out and I bet you will too.  Good for you for thinking about seeking help.  I think that is something many of us could benefit from but honestly the demands of the disease seem to make it hard.  Good luck and yes, I tried to give my husband a hug and kiss at one point and I hurt him.  Wow, talk about something that gives pause.  

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    #8
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    Hmmmm.... if saddles work for

    Hmmmm.... if saddles work for Matt who am I to judge.  I have spent this week contemplating the idea that maybe I got hit harder than I thought I did.  I was all positive and determined, and despite many days in a hospital bed and many more in a chair in the infusion center I was going to rise up and go forth.  Now that I am actually doing it, nearly six months later than I thought I would, I now think all that positive thinking stuff is sort of useful idiocy.  

    This stuff takes TIME, lots of it, and what was a struggle yesterday usually gets easier today and tomorrow.  Something like 5% of the US population has been treated for cancer.  Head and Neck cases, while increasing, are a small component of that.  Pretty much everyone posting here (granted, a sample set subject to confirmation bias) is struggling, and we seem to share many commonalities in our course of treatment and our struggles.  We get thru treatment not realizing that was the dangerous part, but not the most difficult.  Putting our lives back together, now that's a challenge.  

    Take it slow, make it easy, don't quit because it's awkward the first couple of times.  You ain't a hormonal teenager anymore, passions change.

  • caregiver wife
    caregiver wife Member Posts: 234
    #9
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    the question no one wants to ask...

    I've thought about your question since you posted.  I am a twice mastectomy patient before my husband's heart bypass surgery and throat cancer.  Honestly, things have never been like they were before either of us was ill.  But, we have found a new closeness and intimacy.  Go slow.  Don't try to force the issue.  Just spend time together.  We are older.  We watched a movie, or played cards or a board game.  Went for a walk.  Looked at family pictures.  Cuddle.  I suppose it is very much like two people getting to know each other intimately for the first time.  If you are concerned with his health, go with his lead.  He will know, learn, his limitations.  It may take a while to find the comfort zone of times past.  That's ok.

    I remember my advice from my oncologist.  Sex is in the mind.  He was right.

    Crystal

     

  • mskitty137
    mskitty137 Member Posts: 73
    edited June 2017 #10
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    Tonita, what did you mean by

    Tonita, what did you mean by your question? 

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited June 2017 #11
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    Rsp

    Romance (and sex) comes and goes in any marriage even without the stressors of cancer.

    Not sure of your age but see your doctor to make sure everything, including hormones, are as they should be.

    Remember your new normal is mental and emotional as well as physical. It may have been your husband who was sick but you were strongly impacted, also.

    Allow yourself time to fall in love again. You are both the same but also different than you were pre-cancer.

    Just breathe. All will be well.

  • Tonita
    Tonita Member Posts: 197 Member
    #12
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    mskitty137 said:

    Tonita, what did you mean by

    Tonita, what did you mean by your question? 

    Think about it.  Really think

    Think about it.  Really think about it.  Maybe that will change your thought process about sex.  And there is nothing wrong with talking to someone about it if you think it might help.  I always think mind over matter.  We can always do something if we really want to.  I told myself that about smoking and I quit over a year ago.  Start thinking about yourself as a wife again rather than a caregiver. 

  • yensid683
    yensid683 Member Posts: 349
    #13
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    Our relationship cratered...

    I'm 5 years out from rads (7/7/2012) and my relationship with my wife declined both emotionally and physically.

    emotionally as she was terrified of losing me.  It didn't help that the 2nd day of induction chemo had one of the nurses asking her if I had my life in order.  Every little cough now is followed up by the fearful question 'are you alright?"  I went from being her husband to being one of her children, or so it seemed then and does seem to this day.  In some ways we're closer, but for the most part, the big C looms large in every itteration.  I'm of the opinion that the fear of losing me has put her into a 'protect her heart' mode so our closeness is very much muted.

    Due to the HPV 16 positive tumor, our physical relationship has ended.  I miss it terribly, we have talked about it endlessly but in the end, she is too fearful of what she might catch even though we've spoken with the doctors, she's read peer reviewed pieces on transmission, CDC information on testing etc.

    I'm hoping that you and your spouse find the path through to what was your original relationship.  It will always be different, but as so many of us here physically describe our lives as a new 'abi-normal'

  • rsp
    rsp Member Posts: 103 Member
    edited June 2017 #14
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    Great insight

    yensid683,

    Thank you so much for your response.  Your words hit home with me.  I am a recently retired teacher, and when you said your wife now treats you as one of your children, I can't help but think maybe I am doing the same thing.  I do worry with every cough, every round of indigestion, every headache or ache or pain... "oh no... is the cancer back?" 

    My husband's tumor was also HPV positive, and, like your wife, that thought is with me at all times.  What if... what if....Maybe that is why I am so hesitant with the intimacy. No matter what the doctors say, that "what if" is always in the back of my mind. Even if we see a therapist, I don't see that "what if" going away...

    Thanks again for responding.  It makes me feel that I am not alone in this journey as a caregiver.  

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #15
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    Hpv

    Was already part of your life before the cancer: is it not possible to protect yourself?

    Ignorance speaking, here.

  • caregiver wife
    caregiver wife Member Posts: 234
    #16
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    rsp said:

    Great insight

    yensid683,

    Thank you so much for your response.  Your words hit home with me.  I am a recently retired teacher, and when you said your wife now treats you as one of your children, I can't help but think maybe I am doing the same thing.  I do worry with every cough, every round of indigestion, every headache or ache or pain... "oh no... is the cancer back?" 

    My husband's tumor was also HPV positive, and, like your wife, that thought is with me at all times.  What if... what if....Maybe that is why I am so hesitant with the intimacy. No matter what the doctors say, that "what if" is always in the back of my mind. Even if we see a therapist, I don't see that "what if" going away...

    Thanks again for responding.  It makes me feel that I am not alone in this journey as a caregiver.  

    Testing, Treating HPV virus

    A very good read...VERY informative...

    http://www.webmd.com/sexual-conditions/hpv-genital-warts/hpv-treatment-is-there-hpv-cure#1

    "There is no HPV test for men."  For women who have possibly been exposed, it appears a talk with gynocologist is in order re. past and future exposure.

    Crystal

  • Chicklette
    Chicklette Member Posts: 225
    #17
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    Noellesmom said:

    Hpv

    Was already part of your life before the cancer: is it not possible to protect yourself?

    Ignorance speaking, here.

    HPV

    assuming you were intimate with your husband before cancer, you would have been exposed to HPV already.  HOV is very common, anyway, and rarely causes cancer.  Think of it this way ... we all get in a car almost every day and don't worry about crashing on a regular basis.  We take precautions like wearing seat belts, etc.  If you are concerned about HPV, maybe you can use a condom?  I don't know.  I guess I just don't worry about catching it myself.  The doctors told us that it's not a risk, anyway.

  • rsp
    rsp Member Posts: 103 Member
    #18
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    Deep thoughts

    I can't help but worry and wonder: if I am the one that gave HPV to my husband, then, is there a chance I can give it to him again?  I go every year for my GYN check up and haven't had any problems.  BUT, if it was me that he got it from... who is to say after the HELL he went through to get rid of it, that I won't give it to him again? :(

  • caregiver wife
    caregiver wife Member Posts: 234
    edited June 2017 #19
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    Deep thoughts

    Nearly 100% of sexually active adults will have HPV at some time in their lives.  Most HPV resolves itself.  Cancer can occur years or decades after exposure to virus.

    from John Hopkins: 

    http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/head_neck/HPV/

    Partners of people with HPV-OSCC:

    • You have already likely shared whatever infections you have.
    • You do not need to change your sexual behavior.
    • Female partners should have regular cervical Pap screening
  • Chicklette
    Chicklette Member Posts: 225
    #20
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    rsp said:

    Deep thoughts

    I can't help but worry and wonder: if I am the one that gave HPV to my husband, then, is there a chance I can give it to him again?  I go every year for my GYN check up and haven't had any problems.  BUT, if it was me that he got it from... who is to say after the HELL he went through to get rid of it, that I won't give it to him again? :(

    Can't say that thought hasn't

    Can't say that thought hasn't crossed my mind.

  • rsp
    rsp Member Posts: 103 Member
    edited June 2017 #21
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    Chicklette said:

    Can't say that thought hasn't

    Can't say that thought hasn't crossed my mind.

    Thanks!

    Chicklette-

    Thank you for your comment.  It gives me peace of mind knowing I am not the only one! 

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