Tuesday, February 20, 2007

Sex & Cancer

On one of the online lymphoma support boards where I hang out, we've recently been discussing this article:

Intimacy And Sex: The Unspoken Casualties Of Cancer

Now, an innovative study conducted by the University of Western Sydney looks at the lives of cancer carers and how they negotiate issues surrounding sexuality and intimacy in the context of caring for a partner with cancer. ... Of the group surveyed, 80 per cent responded that the diagnosis of cancer had a detrimental impact on their sexual relationship with their partner. ...Dr Gilbert found that a lack of communication about sex and intimacy - both between the couple and with health care professionals was a major issue for carers.

"For some couples, the person with cancer was hesitant to discuss issues relating to sexuality and carers generally felt they did not want to put further stress on the partner with cancer by raising the topic," Dr Gilbert says....Dr Gilbert says the reason the subject of sex and intimacy was not raised more often by providers was because some may have felt it would be seen as either intrusive or disrespectful. There could also have been other issues such as gender, age and culture which may have been factors dissuading both sides from raising the issue, she says. She also believes there is a need for support to be offered to people with cancer and their carers to facilitate communication about sexuality, and address sexual issues and concerns.


Here's my frank and uninhibited contribution to the conversation:

One of the chemo nurses gave us Teh Big Cancer & Sex Talk before treatment started. She warned us that during chemotherapy, my bodily fluids would be contaminated by the chemo drugs and therefore extremely toxic to my partner, so we should always use "protection" to make sure he wouldn't be exposed.

She also told me I should always flush the toilet twice so my toxic waste wouldn't accidentally splash on anyone, and that I shouldn't let the dogs drink out of the toilet bowl. Which wasn't an issue since my dogs are only about six inches tall in stilettos, but gah. It all made me feel so repulsive, so polluted, like a dangerous disgusting walking toxic time bomb that nobody in their right mind would ever want to touch. I was afraid if we even kissed passionately, my beloved's hair would all fall out!

Next the nurse warned us about the potential risks to me. She warned us that the chemo-induced menopause would cause vaginal drying and tissue thinning so that intercourse might result in abrasions which could then develop into serious life-threatening infections. So great, I'm not only the Evil Destroyer, I'm also the Easily Destructible. Sheesh. How much less sexy could I possibly feel?

A whole lot less, it turns out. What she hadn't warned us about was his reaction the first time he saw my port with the bandages off. I have very little body fat in my upper chest area, so the darn thing sticks way out, like a huge creepy doorbell. And the first time I showed it to him, he involuntarily gasped, blanched, went weak in the knees, and staggered out of the room moaning in horror. The poor man apologized profusely, and insisted his reaction wasn't because I looked ugly and disfigured but because it upset him to think about how much I'd been hurt. But still. I have to have the hideous thing for two more years, and I'm extremely self-conscious about it. Of course that made things even worse.

Throw in the hairlessness, the loss of muscle tone, the fat gain, the edema, the puffy moon face, the intestinal dramas, the depression, the bone crushing fatigue, the other stressors on the relationship, and, well, I'll be frank with you: my sexual self-esteem pretty much plummeted through the basement floor.

I imagine it will take me a while to rebuild it. And I too am relieved to hear other people talk about this. It's a pretty lonely situation sometimes.


You know, I honestly can't even imagine how people survived cancer back in the days before online support groups. It's such an immense relief to find out that others are having the same experiences, that I'm not a total freak, that what I'm going through--things the oncologist didn't really discuss, like sexual issues, extended fatigue, post-chemo depression and anxiety--are all perfectly normal, and that they will get better with time. I sincerely hope that my going out on the precarious TMI limb and talking openly about my own private cancer experiences here will help somebody else in the same way, and that nobody dies of embarrassment from reading it.

10 Comments:

Blogger Carrie said...

I love your blog. Your posts are frank and honest and that's invaluable. I appreciate your willingness to put it all out there. :)

1:36 AM  
Blogger The Cat Herder said...

Menopause is never easy, which is why we have little red cars and cabana boys. I cannot imagine going through it with a port in one's chest for two years.

I'm glad you found a venue to discuss this with other folks in the know.

3:05 AM  
Blogger Rose said...

Helpful? Very much so!
No doubt, your primary intended audience is other cancer survivors, but this information is very helpful to health care professionals. I'm an RN, hoping to go back to work soon after an extended stint as a full time homeschooling mom. The issues you describe are incredibly important, but they aren't covered in nursing school. Thank you for being so open.

6:45 AM  
Blogger ambz said...

http://community.breastcancer.org/ubbthreads/showflat.php?Cat=0&Number=69566&page=&fpart=1&vc=1

I pasted a link from breastcancer.org that was started by breast cancer patients looking for information and support about the sexual issues they confronted. The discussion thread was started on 8/14/2004 and it is still attracting attention. The women are brutally honest, poignant in their comments, and funny beyond belief given the obstacles they face. They share their own experiences, tips on toys, on lube, and on relationships.
Although, the women and men on this board are dealing with breast cancer, the issues they raise seem to be the same you shared here.

I found this thread over a year ago when I was doing some research for a friend who had a masectomy and wasn't getting the support and information she needed from her doctors.

11:35 AM  
Blogger Velma said...

I think it is far from TMI, it's not enough information! This is one of those issues that people suffer with silently, and it is something that is very easy for people to dismiss in themselves. After all, you could be dead, right? Why are you whining about your sex life?

It is such a crucial part of the human psyche, and it is tied into so many aspects of your life that when people feel bad about it, it adds an uneccesary burden to a person already trying as hard as they can to regain a sense of normalcy.

I'm sure you know that sharing your (very) personal experiences helps other people know that they are not the only ones feeling that way, but I hope it also helps your healing and return to health.

11:51 AM  
Blogger Linda J. said...

you continue to amaze and delight me with your candidness, honesty, humor, humility, and guts. I wish I had met you when you were still in CA. Please continue to inform, entertain, and touch your loyal friends and fans. You are loved!

9:57 PM  
Blogger Adam said...

Not too much information as the others have said (although I'm sure that Finn might have a different thought). Keep on keeping on, Ms Leroy. And the best way to bring up your sexual self-esteem is to PRACTICE! So go, girl!

11:26 AM  
Blogger Lymphopo said...

Poor Finnegan was always such a squeamish child.

11:46 AM  
Blogger halcyondays said...

One never knows how one will react in a given situation. More than likely, it was not repulsion of you, more likely it was a repulsion of what was happening to YOU. That said, BUTCH UP LITTLE MISSY, I say to him. That's the blue screen of intimacy. An unrecoverable error. It would shut something down in me about that person that I could never forgive. But as I said, it depends on the person. I just know I could handle it. I might have to go in the next room and cry my eyes out, or wretch after a time, for the pain of seeing my love going through so much, but there are things in life you have to face. Is that too harsh?
I still think you're pretty sexy Liz.
Kevbo

12:40 PM  
Blogger Lisa said...

I happen to have been a (late) participant on the thread that ambz posted from breastcancer.org
The challenge of maintaining any semblance of sexual self seems to increase exponentially with each successive treatment. My four incisions covered with steri-strips and my newly placed port don't seem to rank up there as a major Victoria's Secret-style turn-on.
Thanks, Liz, for speaking frankly about this issue that millions of cancer patients face.
Lisa

12:49 PM  

Post a Comment

Links to this post:

Create a Link

<< Home