| Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | My husband is 2+ years out of treatments for "base of tongue" HPV+ cancer. John and I have been together for 18 years and married for 11. John was 45 when we got married. He was never maried before but certainly didn't live a celibate life and I was married before with a few sexual partners in my life. John and I have always had a very good sex life. Ever since John was diagnosed and completed treatments our sex life has been affected. We still have a great sex life but there are two things missing - passionate kisses and oral sex. John no longer kisses me passionately and will no longer have oral sex with me although he doesn't have a problem with me performing it on him. I am now 47 and when I was 30 I had an abnormal pap smear with cervical dsyplasia. I have not had any abnormal pap smears in the past 16 years and I do go annually for them. I think John thinks that I gave him the HPV virus and therefore is afraid to kiss me or have oral sex with me. He of course denies this but that is how I feel he thinks about it. So......where do I go from here? When I talk to him about it he tells me eventually that part of our relationship will return. Well - I'm not getting any younger waiting. I try not to take it personally and I know he is concerned about a recurrance but once you carry the virus don't you always carry it? I know the body clears the virus and I have talked to my GYN about it. She said that when she has patients that have an abnormal pap smear and come back for a re-check, most of the time the subsequent test is normal because the body has cleared it. I give him all the stats about how many adults carry the HPV virus etc. but that doesn't seem to help. I'm sure we are not the only couple having post-treatment sex issues. Any suggestions or info that I could give him to read that might put his mind at ease? Funny how I'm not afraid of "catching" it from him.
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Wanda John's concern about getting HPV now strikes me as locking the barn door after the horse have bolted. But you have to deal with the husband you got, so next time you get a Pap smear, request that the doctor also order an HPV test on the smear cells. According to the Digene HPV test info site: [quote]The digene HPV Test can be done by any laboratory, usually using the same sample of cervical cells collected for the Pap. It does not require any additional time or discomfort on your part.[/quote] HPV test info My understanding is that there is no similar test for men, our HPV is diagnosed from the tumor. When the tests results come back negative for HPV for you, then get a copy and give it to John. If John still refuses to be reasonable, then you have two other potential avenues: Buy a good vibrator - the best one for women is undoubtedly the Hitachi Magic Wand (my opinion is based on over twenty years of field research and backed up by every major porno video on the internet as well as sex forums) You can even help out OCF by buying it on Amazon thru the OCF link. Explain to John that his cancer fears has forced you to a mechanical substitute - sort of like using the PEG when your throat muscles don't work. Incorporate it into your lovemaking. Or follow the adage: What is good for the goose is good for the gander and let John do without oral sex until he reciprocates. My advice is to do all three. BTW, my wife had abnormal pap smears all the time and her HPV tests came back negative. I believe I got my HPV from one or more of the lovers I had before I met my wife. Odds are the same is true for John, but once an irrational fear takes hold, I think you will need the cold hard test paper fact that you do not have HPV to bring him back to reality. Since John apparently believes his HPV has magically disappeared, then he should have no basis to disbelieve your test results. Keep the Faith Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | As I've said, the quickest ways to resolve the issue if a heartfelt intelligent conversation hasnt worked is to either withhold sex of any kind or play on his ego and let him know he isn't satisfying your sexual needs. Buying the vibrator will reinforce the message.
Most guys if you told them they couldn't get down without going down wouldnt have to think very long before going downtown.
Eric
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.
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Hi Wanda, I'm not sure if it is standard of care where you live, but the HPV test for women over 30 is standard here. I wasn't even aware that I had been screened for it until I called my doc in a panic after the DX. Our resident (OCF/Playboy) Forum advisors are spot on, so to speak. Great advice. I suggest that you hold out for a while--whatever seems like a long time (a couple days, maybe Oops, weeks...not days...is "weeks" a long time?!). Send him some naughty text messages and/or e-mails about scenarios and fantasies you'd like to explore (role playing, public sex, oh...my mind is wandering...etc.). Create vivid images and touch on all senses in your descriptions. Make sure they do not involve him going down--it might turn him off. Dress seductively to make him stand up and take notice. Get out your seduction tool-kit and go to work, girl! Be a little out of reach--pull back. But don't put out. At. All. until he can kiss you passionately on the mouth and other places as well...and enjoy it. You can also disappear into your bedroom for some private time with your electronic friend. Make sure you buy one that humms loudly enough that he can hear (unless you have kids around--that would scar them for life.) In my experience, when someone says that something will "eventually" happen...it happens at glacier pace if at all. That's bullshit...sorry, but it is. He has no intention of "going there." So, if desperate times call for desperate measures...my suggestions might fit the bill.
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.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | ...and if the electronic humm isn't loud enough go diesel powered
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.
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Thanks guys I appreciate the suggestions. I figured I wouldn't get a lot of responses on this subject since a lot of people generally aren't comfortable talking about sex. For me it's one of my favorite subjects. Like I said - I do have a great sex life with John but it's not like it was BC (before cancer) and I do miss the passionate kisses and oral sex. My doctor has always screened me for HPV since my pap smear in 1993 came back with cervical dysplasia. I have LOTS of "toys" and batteries and know how to pleasure myself - that's not the problem. Kissing my husband passionately brings a deeper connection. I sometimes feel selfish complaining about what is missing when we have so much and I know there are others who don't even have a sex life let alone a satisfying one. I was hesitant to post this to begin with because I know that others are dealing with so much more that it makes me feel selfish. I appreciate all the suggestions and I guess I will have to try holding out for a little while and have "dates" with myself.
Last edited by slim; 09-04-2011 05:11 AM. Reason: spelling
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | @Wanda: Okay, let's see...you were called into active duty as a caregiver in 2009, you saw him through rads and chemo and all that those treatments entail...including the option/non-option of a PEG. Selfish to want attainable parts of your life restored? Nope. I'm with you--it's one of my favorites, too. Actually, since I'm looking at being single again, I consider no oral sex a deal breaker. Despite all the problems we've had with other things...sex was one area that kept going strong, at least until recently. But, it is scary about all the diseases out there. And, I don't just believe in safe sex...but the more extreme "you can't be too safe sex". Let's just say, I'm pretty self-sufficient these days. My sons tell me I need to find some real live friends...not just electronic friends. Oh! they are referring to the amount of time I spend on here and facebook connecting with people who I don't get to meet or see face to face...and not the battery operated kind. I think they're right. I need to get out more. Good luck! I hope he can get back into it. It isn't so bad never having had something--but having something you enjoy and then having it withheld...that's bad. @ Eric: Diesel--Peterbilt? Volvo? I thought I had the top-of-the-line when I bought my Craftsman Bushwacker 5000. Makita has been making some strides in cutting into Sear's marketshare for hand-held personal massage devices. But, I think a diesel model would blow away the competition. That is, if they can do something about the exhaust...and the pull cord starter.
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.
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | mines purple, glittery and flashes in the dark!! But seriously and this might be quite wrong but I remember when Alex was first diagnosed, I rang a friend overseas who had suffered OC 7 years before. One of the things he said whilst he was warning me of all the potential disasters about to befall us, was that Alex and I would never again enjoy deep and passionate kisses. At the time I was much more concerned with keeping Alex alive so didn't take any notice at the time. I vaguely recall he connected it to the loss of saliva... Now I read this post, and wonder if there is something that is bothering your husband around lack of saliva or even taste? Of course it is also likely that your husband is fearful of "catching" HPV again - even though this is illogical. I have a mortal terror of being a passenger in a reversing car due to an accident I had when I was a kid. I know that this is illogical but that knowledge doesn't help me much when the palpitations start. Maybe your husband is going through the same thing? He knows it is illogical but needs time to deal with or get over the fear?
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Cummins is the only choice for diesel powered and the pullcord is part of the image. After ripping that cord and hearing the roar of the engine, feeling the torque in your hand, you know you're going to get the job done.
As far as passionate kisses go there's actually a link between saliva and that passion. When a man gets excited testosterone in the body increases and can be transferred in saliva through kissing causing a chemical reaction in the recipient, helping turn them on...as that's one of the benefits of testosterone. Which would lead me to the question, has John had his T levels checked? Men in their 40's begin to lose 1% testosterone production per year naturally anyway, however lowered T can be a side effect from treatment as opiates and antidepressants will effect production and radiation damage to either the hypothalmus and or pituitary will also as both are important in T production.
I would say the biggest tragedy about my particular situation is losing the ability to kiss properly. Half of my face does not work so the lips and tongue are greatly affected and of course the saliva issue which is increased due to my mouth never being able to close fully. If I had the ability to kiss as I did before, I would do so at every opportunity.
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.
| | | | Joined: Feb 2010 Posts: 79 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2010 Posts: 79 | Chris & I have been together a little over 5 years (3 years @ diagnosis). There is no one I would rather be with, look at or talk to! We don't live together and certainly had our ups and downs before the diagnosis. I should say that I knew before my diagnosis that he didn't handle illness well (watching him lose his dad, aunt and cousin in a relatively short period of time) so there were a lot of "unknowns" for me going into this.
We have this incredible and undescrible passion between us and when they told me about the treatment and that they were going to pull my teeth, I thought well this is it. I didn't see him for 2 weeks after the surgery and by the time he did see me I had lost 25 pounds. Which freaked him out! Fast forward to starting chemo, lost my hair right away and by that time I had lost about 40 pounds. Knowing him, I would try to figure out just what he saw and thought while I was going through this. I don't know how well I can get my thoughts and feelings out on this (crying as I'm typing this and remembering) but I just wanted at least ONE thing to be normal for me while I was going through this and that turned out to be my Chris! As much as we could, we continued to keep things as normal as we could...which involved a lot of kissing, maybe not the long, soulful kisses but kissing...keeping our connection! Surprised even my doctors that I would even want to be kissed or touched while going through this.
I'll never forget the day when Dr. R wanted to talk to me about "intimacy" issues and I said "no worries, Doc, we're all good" and the look on his face when he said "really"??
I have the severe dry mouth issues like most of you and on top of that had to learn how to kiss with dentures! So many times, I was afraid he would never want to kiss me again! There were times as I looked in the mirror (70 pounds later) and would wonder and try to figure out what did he see and why was he still here with me???
I know the answer now....it's LOVE!! I don't have too many other answers and I don't know how long we will be together but it is so, so good and is something I will always treasure.
Cathi
57 when diagnosed. Heavy smoker. Social drinker. Diagnosed 7/9/09 with tonsil, tongue & neck cancer. Chemo induction (Cisplatin, 5FU & Taxotere) & 35 radiation tx + 7 Carboplatin. Head and neck CAT scan on 1/15/10 shows no cancer. 1/27/12 First PET/CAT scans in 2 years - All clear!! recurrence mid-2015 OCF supporter and avid OCF CO and NJ walk attendee with worldwide friends
*** 1-7-16 passed away unexpectedly ***
| | |
Forums23 Topics18,210 Posts197,045 Members13,231 | Most Online614 Jul 29th, 2024 | | | |