Hopefully this topic won't be considered taboo - I am very curious and I have a question for my fellow female OC patients (with significant others) - regardless of what stage of the process you are in... I'm 1 month out from my surgery (ok, a few days shy - surgery was 4/11). I had roughly 1/4 of my tongue removed, no reconstruction, just a biograft on the tongue and stitches there - also neck dissection to remove 29 lymph nodes - no chemo, no radiation.

My question is this - how long was it before you were ready (and able) to be physically intimate with your significant other?? Has your diagnosis/treatment created any issues for you in that area? I know I'm only a month out but I have tons of emotions on this - my husband and I are currently sleeping in seperate rooms because I am on short term disability until I get the 'ok' from my docs to go back to work and my husband gets up at 4:30AM to get ready for work... Also because of some discomfort on the side where my surgery was (my right side), it makes more sense (temporarily) for me to sleep in the guest bedroom where I can be propped up by lots of pillows. The lack of physical proximity at night makes me feel like there is a bit of distance between us now.

My husband has been extremely supportive and understanding throughout this process but I am worried about him - I know he misses our intimacy, as do I, and I worry about the effect this will have on us long-term. Don't get me wrong, the desire is definitely there - at least for me it is - but I don't even know what/if I can do right now... I still have stitches in my tongue - I have shoulder pain, neck stiffness and swelling. I worry - would it even be safe right now or should I just be patient and ask my doctor when it's safe to have sex with my husband again???

We've been together almost 12 years now and I adore him but I am concerned that our current lack of intimacy is putting a bit of a wedge between us...

- Pepper

I wasn't the patient in my connection with OC - it was my brother, but he and his wife have 4 kids - 3 to 13 years, plus, (inexplicably) they've just bought a new puppy - so I'd hazard a guess that their sex life is a bit average at the moment anyway, notwithstanding OC.

As far as intimacy goes, can you move a single bed into the bedroom with your hubby, so at least you're in the same room. Are you in separate rooms because you move about at night and keep him awake, or because you need the separate bed? What about 2 single beds and ear plugs and those airline night patch thingies for him if he needs to sleep and you're tossing and turning? If it were me, I'd try to stay in the same room - too easy to become comfortable in your own private space.

Not sure about the safety aspect of sex for you, but I'd certainly ask your doctor. I also think even if intercourse isn't comfortable for you, surely at least some level of sexual activity would be OK?

Best of luck with it, Pepper. It's a very important issue in your emotional healing from all the trauma you've experienced with OC.

We're in seperate rooms for a few reasons - I need a lot of pillows right now in order to sleep comfortably and I am tossing and turning a lot during the night. He also has to wake up at 4:30AM to get ready for work and I can't go back to sleep once I wake up so that would mean that I would be getting up every morning at 4:30 instead of getting some rest. We've actually discussed replacing our king-sized bed with two doubles because we have such different sleeping habits normally that we seem to sleep better seperately (neither of us enjoys cuddling).

Currently, we don't have an extra bed, which would fit next to our king bed. The bed in our spare room is a queen...

I guess I am going to need to suck it up and ask my doctor when he thinks it would be safe for sex again. Some people might not think that sex is that terribly important but I feel it's a level of intimacy that we need in order to feel closer to each other. He's been wonderful and patient but I can see it is wearing on him.

Hey Pepper. I'm a 26 yr old OC Survivor cohabiting with my boyfriend. I've had a hemiglossectomy, radical neck dissection and a third surgery to remove some cancer left behind. Just finished 7 weeks of RADS. First I will start by saying that my boyfriend was very supportive through all my surgeries and when I was finally feeling up to it everything was fine. Though kissing was kept to a minimum and was closed mouthed. He never once (even still, 6 months out from diagnosis) asked me to do "anything else" if you know what I mean. And I'm really grateful for his understanding in this matter. I honestly am not sure when I'll feel comfortable doing that again but, just like this whole entire process - everything in time. About 3 weeks into radiation I was in too much pain, not eating normally and on 6 percocet a day. Sex was the furthest thing from my mind. I'm almost 4 weeks out of radiation and starting to feel a little normal again. Hopefully I can give you a little hope in saying that all kissing is not closed mouth anymore. We did sleep in the same bed all throughout BUT we have a unique situation in that my boyfriend is the one with sleep issues in general and will get up in the middle of the night to sleep in the second bedroom so that he doesn't wake me. He also gets up very early for work. I know this has been a trying time for my boyfriend as well but for once I had to be selfish and take care of myself and do what I knew to be right for me. Things will get better. You'll hear that a lot on here and eventually get sick of it. lol But trust me. It does.

MissB

I feel like my post sounds ridiculous but I didn't want to give too much info or be too crass for anyones taste. lol

MissB

Hi there,
I'm a little older than you, but trust me, understand the need for intimacy. I guess I'm not sure why it would not be ok. Oral sex might not be a good idea, but good old fashioned should be fine. The kissing could be elsewhere than the mouth too! Why would you think you could not be intimate. Even through Kevin's tx we had our moments!! I mean, 30 years together and waiting 5 months....nope.
I say go for it!!! (Unless they PUT limitations on that subject!)
Kathy

There was a discussion about this back in September. It's called Sex after Cancer and is under After Treatment Issues. Point of view coming from both sides...male & female and patient & caregiver.

I'm ALOT older than you and have been in a relationship with Chris for 6 years and we don't live together. The whole diagnosis (before any treatment) scared the hell out of him and I truly think that he was going to walk away and not look back when I told him what the treatment would be like. I should say we weren't getting along to well at that point!! I didn't see him until I had been home from the hospital for a couple of weeks and by that time, I had lost 25 pounds plus they pulled all of my teeth with my initial surgery. I ended up losing a total of 70 pounds (had the excess to lose). I was just adorable (just kidding).... 70 pounds lighter, no hair or teeth!!

It took awhile but I think he got a new insight as to who I was by how I was handling all of this (no caregiver and driving myself to all of my treatments).

I think it was about 3 weeks into treatment, things started getting back to our old "normal". I missed him and he missed me and one thing I wanted more than anything is to have some time where cancer and the treatment weren't consuming me and we were able to achieve that.

Treatment ended on 12/16/09 and I can honestly say that things have never been better between us! The passon and intimacy has reached a whole new level! What a bonus since I never expected him to still be here after treatment and the side effects and my "new attitude"!!

Cathi

I had a long battle with my cancer and once i had my chemo and rad, I was sleeping in a recliner in the family room...Once everything was done and I got my ng tube out, I started sleeping in our room again...when I felt ready I asked my husband if we were ever going to have sex again....he chuckled and said yes, it wasn't soon after but once he felt that I was getting better he felt ready also...It will come back with time, you have to realize that as hard as this is for you it is hard for your spouse also and they are afraid too...