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

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, 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

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.  

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

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.

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'

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

Ignorance speaking, here.

Noellesmom said:

Hpv

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

Ignorance speaking, here.

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.

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