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EricS #139277 09-05-2011 07:22 AM
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I have to jump in here...our sex life has definitely changed since OC. While we still enjoy a variety of intimate connections, deep kissing is not one of them. My husband has no feeling on one side of his mouth, his tongue movement is restricted, and he also has increased saliva flow that makes him self-conscious about drooling. We still kiss but they are little kisses on the lips on his good side.

I do miss deep passionate kissing. I have resigned myself that this is a part of our past and I'm okay with that. OC has put a real damper on a lot of things in our lives not just sex. We work hard to make up for some of those losses in other ways. But that's another topic. To spice up our sex, I love to dress up and we role play. We've been doing that forever. Boy, is that fun! It gets things going in the right direction. I also think that when I initiate those bedroom antics, Clark is reminded that he still turns me on. That is so good for his ego. And I indulge myself with toys as well.

I empathize with you, Wanda. I feel sad when I realize how much OC has impacted and changed our lives. I hope that you and John can work this out. Keep the communication open and continue to tell him what you want from him. It may be that he has to hear it many times before he can act on it.

All my best-
Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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Eric - I've always been of the opinion that re kissing (or any other activity), it's not how much you have, but what you DO with it that counts.

Cathi - Yes! it is LOVE! Your own beautiful love story puts to rest that old saying "Sex isn't everything, but it's way ahead of whatever is in second place". First is LOVE. May you and Chris continue to always treasure each and every moment.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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@ Eric: LOL! and great information! You don't accept anything less than performance above and beyond great from yourself in all other areas...I'm sure it's the same with sexual pleasure. I'm sure you know the brain is the largest and most powerful sex organ in the human body...

@ Karen: I hadn't thought of the saliva issue...and purple with sparkles that lights up in the dark? Lol!..sounds like a bike I had when I was a pre-teen.

@ Cathi: Ahhhh...love! You are blessed! Chris isn't a poufer. That's for sure.

@ Anita and Wanda: This is the power of caregivers sharing--addressing an issue that seems to get swept under the rug (sorry, no pun intended). I didn't have to confront it because of the treatment being stopped. But, I know it would have been important to me. Thank you, both!

@ Anne-Marie: Exactly right...you have a great ability to distill an idea to it's most important point. smile

When we found out about HPV+, we looked everywhere for information...didn't find anything. I'm glad Wanda had the courage to take on this subject!!!


Last edited by Sandy177; 09-06-2011 12:58 AM.

Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
Sandy177 #139401 09-06-2011 07:58 PM
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I'm not sure but I think I just got the "size doesn't matter" speech...


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #139409 09-06-2011 11:53 PM
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frown Ouch. That would be the one.


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
Sandy177 #139434 09-07-2011 06:19 AM
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Eric - "if the shoe fits". . . .but I'm sure it doesn't in your case. (Hope I'm not being too risqu� here.) blush


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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LOL, I love it! I'll borrow a phrase my grandpa used once in his shop when he was joking with the guys, "I won't make any livestock jealous but I was comfortable in the locker room"

Now that may have been too risque however I think its important to be able to talk openly about this subject. There should always be respectful boundaries of course (which at times I may test) but sex is an important part of normalcy we all seek after treatment.

In men, tx can do a lot to disrupt physiological functions necessary to perform sexually and that will have huge impacts on every aspect of life, particularly relationships. Opiates and antidepressants cause sexual dysfunction, rads can damage both the pituitary and hypothalmus which help control testosterone production. Post tramatic stress can cause both depression and sexual dysfunction. The deck can be stacked against us in getting that part of life back to good and if open communication and candid yet respectful discussion about it isn't taking place how can solutions be found? Humour just helps that discussion get going by lightening the mood, breaking the ice.

The great thing about this forum is that its anonymous so people can share without feeling judged. Personally I've never cared what people think of me as an adult, so I'm very candid and open about it.

My thoughts for what they are worth. I hope solutions are found for you Wanda, thank you for starting this important discussion.

Comfortably yours

Eric

Last edited by EricS; 09-07-2011 07:55 AM.

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #140028 09-15-2011 10:17 AM
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i use to say "you can't do precision work with a sludge hammer."


dx mucoideperdermoid stage 1 .9cm tumor removed from
lower left tongue 5-3-11 rad 5-31-11 till 8-10-11 three weeks off in june 9 days in hospital healing mouth from radiation burns. 33 days of radiation.wife is caregiver
peg tube july 7-11 age 59 male.
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My now husband and I have never truly had the passionate kisses you speak of. Except for one night when he got drunk at his cousins wedding, and kissed me, passionately. It was in front of his whole family. It was the first time I met most of them, but not since.
Now....I can't get my lips to work right. Even if I could, I would feel so odd about anything like that due to the half a tongue, lol.
I don't know if your husband feels the way I do about it. I know this has definitely made me insecure about kissing or anything else I used to enjoy doing to make my husband happy. I am kind of glad the lips don't work right, but sad that I can't kiss my husband and make him happy in those ways anymore.
I have found other ways to try to still get the same end result. Just doing different things, and it's not the same, but it's the thought that counts.
I can't say I know exactly what is going on with your husband. If he's insecure about it, or is worried that it won't work right anymore, then I am not sure what will fix it. It may be possible that he worries about what you were saying. If he says that's not the reason, then maybe try your best to get that out of your head, because he is your husband, and why would he lie to you about that? smile
Hope you guys get things figured out and can compromise somehow, or find something that he is willing to do that will make you happy.
Instead of passionate kisses, we have passionate Cheeky's, lol. hahaha. Maybe get a little creative with your hands and some lube. So if you are both willing to compromise instead of "punishing" maybe both will be happy, smile
I am not saying you can't be upset/hurt by this. I know my husband was upset when I wouldn't kiss him anymore, at least at first. Now that he has seen time and time again when I would try to kiss him, and my lips just wouldn't cooperate. Then he saw how sad I would get because of it, he is willing to settle for cheek cuddle.

In the end, I hope you and your husband can find something that makes you both happy. Get things figured out so you don't feel so deprived of those good things you had before.

Last edited by ChristineB; 09-17-2011 08:24 AM. Reason: typos

25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
Joined: Sep 2010
Posts: 179
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From some one who have gone through treatment - I have trouble with both of what you mentioned. Its the lack of saliva and control of tongue/mouth that makes it impossible. I'm only 1 yr out and have difficulty with both. So I doubt very much that it has anything to do with your hubby worrying about catching HPV. If i could kiss my husband properly like I used to i would definitely do it but we have to settle for kisses on cheeks and lips (no tongue involvement!!) Yes its very sad to for me too, I wish I could give him a passionate kiss like before but it just would not work. And well oral sex - if he cant kiss properly he probably feel like he cant do a good job at it either. If you cant control your tongue then it makes it a bit difficult?? With me, limited mouth opening makes this a bit of a problem!!! Too much info from me??

Last edited by ChristineB; 09-17-2011 08:17 AM.

35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
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