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#51516 05-08-2006 04:22 PM
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jennie Offline OP
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I am a little embarrassed to come to you all about this. Erik is only a little over a month post treatments, but will he ever get his libido back? I am needing some intimacy. I have been so patient through his treatments, but even the mention of sex, seems to turn him off. There used to be a time that I had to literally fight him off with a stick. I am missing my "husband" and tired of just dealing with a "patient". I know I am sounding selfish, but I cant hardly hold it together anymore, I cry every time I even see something romantic on tv. AAAKKK is there any hope?


Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
#51517 05-08-2006 05:40 PM
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Hi Jennie, Part of your question is, I think, about you. Even though you don't have the cancer, you are stuck with some of the life altering realities. Take some time for yourself to reflect and heal from the emotional trauma that you have been through too.

The happy news is that you should expect him to be back to his old self soon enough. Likely he has doubts about his appearance, that may be part of his attitude. Besides that the mind is the main sex organ and his mind has been distracted with some pretty big issues. Give it time and don't feel bad about being selfish.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#51518 05-08-2006 06:04 PM
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In the depths of rad & chemo & malnutrition, I couldn't get it up if I had even wanted to! By a month or so out of treatment I was starting to feel a little better & as things started to become accepted as the new normal in my brain & my new self image, the libido definatley came back, but not instantly! It did take some time & like Mark said, I was not feeling as virile as I once had with all the weight loss, lack of energy, fear of all the new changes, etc. Get him into physical therapy & get some muscle back on him & selfconfidence & the old instincts will follow! I promise! Erik


dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
#51519 05-09-2006 04:50 AM
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I hope it's ok for me to jump in on this one. I am in the same boat as Jennie, only I was too embarrassed to bring it up and didn't know if such a subject was appropiate to discuss here. (Thanks Jennie for breaking the ice!)

Can I ask an opinion from some of you guys and get "a man's point of view?" Should us gals even try talking to our significant other about this subject or should we just sit it out and wait for him to want to talk about it?

If I bring it up, it seems like a no win situation either way I try to approach it: If I tell him sex isn't all there is to our relationship and I'm ok without it, then I'll make him feel like I'm not interested. If I tell him I'm interested and he isn't able, then I'm afraid I'll hurt is ego and make him feel like he is disappointing me.

I want to find a way to let him know I love him regardless of his appearance or performance abilities but do it without hurting his feelings or making him feel pressured.

Thanks, V


Caregiver to husband, Jimmy, Dx 7/05 Stage IV SCC, metastic to right cervical lymph nodes. Occult Primary; Radiation x38; Chemo: Carboplatin & Taxol, 12 weekly treatments. Last treatment 11/21/05. Mets to Tongue/Partial Glossectomy 5/06.
#51520 05-09-2006 05:41 AM
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jennie Offline OP
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It has taken me some time to get the nerve up to ask, and I have looked and looked in other areas in the forum to find this topic. I finally figured that we are all adults and most of us are married, so the question was relevent. (And okay I really dont cry at ALL the romantic commercials!)Im not that big of a baby!


Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
#51521 05-09-2006 09:41 AM
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The subject has been talked about before but, for the same reasons as you felt, we probably just barely scratched the surface. (try the search function)

It would be my opinion, that if such conversations about sex were common in your relationship before cancer (BC) then a frank discussion would be fair. Otherwise you should approach the subject with caution. As I mentioned before, his mind is probably awash in fear, anxiety, pain, never-ending questions, and questions about the end. The hormones that normally are present and cause a sex drive, are perhaps suppressed by a body that has been in a terrible fight. A slow and fun approach will work eventually, keep it low key and low stress.

I believe that a healthy sex life and the benefits of physical intimacy are important in overall health and perhaps healing. In other posts I have mentioned that walking increased my overall feeling of recovery and return to health. Intimacy also helped with an overall feeling of improving health.

You have my permission to tell him that


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#51522 05-09-2006 11:00 AM
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Jennie,
Talk to your husband about how you feel. My husband and I, who have always had a strong and healthy sex life, didn't have sex for many, many months during and after my treatment. My PEG tube was my biggest reason, I just didn't feel real sexy with it!! Our marriage and our sex life is even better now due to what we endured together.

Here's a very true story for you. My husband is not big on talking about his own personal sex life "with the guys". You know how some men will talk about how they don't "get enough", etc. He would never dream of that, but he does get a kick out of hearing some of his friends talk. He has a friend, Ivan, who is a real character. Well, Ivan got sick and didn't feel well for a few months. He had some swelling in his testicles, and he had himself convinced that he had testicular cancer, I felt so bad for him. Finally, the doctors diagnosed him. They told him that he wasn't having enough sex. They told him that some sperm had died and created an infection within his testicles. They told him he needed to have more sex.....................so Ivan asked his doctor is he would write a note to his wife explaining that, that she would never believe it!! I laughed so much with my husband over this.

Take it one day at a time with your husband. Try creating intimacy that doesn't center on sex, I found that helped us alot.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#51523 05-09-2006 01:19 PM
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Jennie and Vicki- Snuggle, cuddle, massage, hug and stay close. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#51524 05-09-2006 05:04 PM
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This isn't a guy's perspective, but my husband and I always had a pretty good sex life until my illness. After radiation and chemo, though, I just had no libido for about 3 months (and like Minnie I didn't feel very attractive with the PEG, and in my case there's also a dented breast from a lumpectomy, it's taken me many months since to learn that when he's in the mood, that PEG tube and the dent in my breast don't even exist for my husband! ) wink

When I started to get the urge again was one of the first signs to me that I was really *really* getting better. I'm grateful my husband was kind and patient through most of it, or at least appeared to be at the time!

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#51525 05-09-2006 06:15 PM
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One of the real consequences of treatment for me was depression. Going through the knot-hole of chemo and radiation was overwhelming. Surviving it really gets depression going.

I've been in the mental health business for 30 years. Depression is NOT just about mood. Depression is: disruption of sleep patterns, disruption of appetite, disruption of libido, disruption of memory and concentration, and disruption of 'normal' mood. Some folks get ALL those symptoms, some only get a few. Everyone seems to think being depressed is about feeling 'blue' and moping around. Not true.

Anti-depressant meds are being used every day to treat appetite, sleep, gastric problems, libido problems and more. Every single person involved with cancer will exhibit some amount of depression - patients and care givers alike. Some will only have a little, some will have a bunch.

Kick out those stupid sterotypes of depression being a weakness. It isn't. Get rid of the attitude that taking anti-depressant meds is a weakness. It isn't. Cast out the ridiculous "macho" crap of "I'm fine!" and "I don't want to talk about it!" There is a great book on male depression by that name: "I don't want to talk about it"

Libido is closely tied to mood, sleep, nutrition and VERY linked to self confidence. The bio-chemistry of testosterone - the hormone that prompts sex drive in both genders - is closely linked to the chemistries associated with depression. Chemo wrecks that chemistry and it takes a while to normalize. And remember: "Life is sexually transmitted!!" Be strong. Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
#51526 05-10-2006 12:22 AM
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It's worth mentioning, though, that some (not all) antidepressants can kill libido all on their own. If loss of libido is a problem and you are thinking of taking antidepressants, be sure to mention that to your doc.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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