You’ve been through a lot. After surgery or chemo or radiation therapy, you may feel like you inhabit the body of a stranger—it doesn’t look, feel, or behave like the body you once knew so intimately. You may feel as though your body has betrayed you. You may disassociate from your body—it’s there, but you aren’t. Or, you may grieve over the loss of your former self, scar-less, energetic, attractive.
Recovery is a long and challenging road, and like any journey, you’ll probably find the way littered with unexpected difficulties as well as sweet surprises. Initially, however, it’s mostly uphill.
You may find that your body simply doesn’t respond the way it did “before.” You may find your self-image seriously shaken by the scars, the hair loss, the weight gain. You may find it hard to care about anything because you’re exhausted—or depressed. Feeling attractive and desired is an important component to sexual responsiveness for women, and you may feel anything but.
This is a fragile time. You’ll need to become acquainted with your new body and to accept and even embrace it with all its limitations. And maybe this acceptance will open the doors to a new kind of sexual partnership as well. Maybe one that’s more honest, that expects less, that laughs more.
First, however, you need time to heal and to regain energy, and this can take months. Go easy on yourself. “I think the one gift I’ve had from breast cancer is that I’ve never made myself go back to the same level of pushing as before,” writes Dr. Su Kenderdine, in a Q&A at breastcancer.org. Rest is as restorative as exertion, she says.
Second, pamper your body. Do the small things that make you feel sexy—get a manicure, buy lingerie and nice sheets, take long soaks in the tub, style your hair (or buy a wig you like), get a makeover. Lavish your body with good energy, and your sexual responsiveness may pick up, too. “Eroticize your body,” says Sabitha Pillai-Friedman, a well-known sex therapist and breast cancer survivor. “We have scars. Our bodies have changed. It’s very important for us to sort of look at ourselves. We can look at ourselves with scars, but we can also look at ourselves with the scars enhanced with sexy lingerie. Right?”
Third, get to know your new body. You may discover new erogenous areas as well as reawaken old ones. How does it feel to stroke your belly? To massage your ears? The back of your neck? The inner thigh? The feet? Harness the power of all your sex organs—your skin and sense of touch as well as your mind. Fantasize. Read sexy stories.
“Your vagina responds to your mind and your feelings about yourself, so if you feel like ‘damaged goods,’ too heavy, or in any way undesirable, your vagina will stay relatively dry and unresponsive,” writes Dr. Marisa Weiss, president and founder of breastcancer.org.
Surround yourself with positive thoughts. Visualize yourself as attractive and desireable. Confidence is sexy.
Fourth, get a vibrator and some lubricants and use them by yourself first. “Once we’ve had surgery and treatments… our body’s response changes, so we need to really figure out what works for us before we can share our bodies,” says Dr. Pillai-Friedman.
Prime the pump, so to speak. Arousal may take more or a different kind of stimulation, so find out what works for you now. Also, self-pleasuring will wake up sleepy nerve pathways and improve blood flow to your genitals.
Finally, don’t neglect your partner. Talk about how you feel and what you’re doing. Essentially, you’re working hard to regain something important both to your relationship and to your own sense of well-being—your sexuality. If you lay the groundwork well, everyone benefits. And in the meantime, don’t withdraw. Keep the intimacy alive with lots of touch and cuddling.
Also, don’t make assumptions about what your partner feels or thinks. Don’t project your own discomfort with how you look or assume that if he touches you he wants sex. It’s highly likely that he or she is looking for cues from you and will accept whatever makes you comfortable. If you’re not sure how he or she feels, ask rather than guess.
When you make love again, experiment with positions that might be more comfortable. If you’re on top, you can control the depth and speed of thrust. A spoon position is close and loving, but also visually more private. Use pillows, props, supports. Use lots of lubricant. Wear something sexy—and you don’t have to take it off if you don’t want to. Don’t forget to laugh.
Who knows. This might be the start of something newly beautiful.
Here is the second part of our talk with Mary Jo Rapini, a therapist who specializes in intimacy counseling (the first part focused on the mind). She often receives referrals from oncologists who have treated women and men for cancers that, post-treatment, require a re-thinking, re-learning, re-framing of their intimate life. Says Mary Jo:
When a couple is referred to me, it’s usually because the cancer part of their life is now under control. That is, they have their diagnosis, understand staging, and have been receiving treatments, with some evidence that treatments are working. Until that point, survival is the critical concern for most couples.
This time of diagnosis and sheer survival can actually bring couples closer — they realize that what they used to argue about is petty. On the other hand, really bad relationships will many times get worse. Women who are sick might ask themselves what they're doing, what happened in their relationship. When that’s the case, my first step is figuring out the emotional environment. Where is this couple now, at this moment in time?
When we do come around to talking about intimacy in the relationship, my first concern is with pain. Painful sex is a really common problem for survivors. Low energy is another problem. People receiving treatments or recovering from extensive treatments have very low stores of energy.
Women recovering from surgery and radiation for any kind of cancer, including breast or uterine cancers, may be adjusting to new losses and scars that affect body image, sensation, mobility, or all three.
And while thinking about restoring sexuality may be pretty far from her mind, the truth is that reengaging with a lover has been shown to really help with recovery. Sex is very healthy—for our bodies and our minds—and a loving intimacy is certainly one of the best things we have to live for.
Get help. Your intimate life may have been perfect your whole lives, your relationship sound, your commitment to one another unshakable, but still a good counselor can give you things to think about, assignments and exercises that can help you to re-engage after harrowing course of treatment. Consider it a gift to yourselves, a reward for surviving.
Planning is everything. Spontaneous sex was great when you were teenagers, but now things are different. Intimacy is best now when it is anticipated and planned. Choose a day of the week when nothing much else is going on. Choose a time in that day when you are likely to have less pain. Be sure you have an hour of pain medication in your body before engaging in cuddling and caressing.
Set a new goal. Sexuality is often so goal-oriented we forget that sex is good for more than just orgasm. When orgasm is difficult to reach—for either of you—why not take it off the table and enjoy the benefits of sexual intimacy without it? Massaging erogenous zones is extremely pleasurable—provided there is no pain—whether we achieve orgasm or not. It still circulates blood, increases healthy hormone production, and helps couples bond to one another. Set a new goal: bonding and intimacy. Use that vibrator to make one another purr, and let purring be enough for a while.
Become a prop master. Pillows, pillows, pillows. If you spend any time in a hospital, you will notice that nurses really know how to use pillows to prop people into comfort in bed. Well, we can use them too, to prop us into comfortable positions for intimate caressing and lovemaking. We may not have needed them before surgeries or treatment, but may really need them now, when a slight change in position or angle may make a huge difference in comfort and painless lovemaking.
Patient exploration is the key. Most of us don’t know how our bodies will respond to treatment. Our mileage varies. So patiently exploring how treatment may have changed our sense of touch and taste and smell, in addition to pain and pleasure—this takes time. Be a scientist about it. Experiment, experiment, with all the patience of a field biologist!
Use a light touch. When we get chemo, our skin can become very sensitive. Chemo changes the epidermis of the skin. Our sense of touch shifts. That’s where things like feathers, mitts, and lotions become so important as tools for exploration, because your body is different on chemo. Figuring out those changes is the work ahead for both of you.
Some of the chemos are so toxic any intercourse would be too rough on fragile tissues. That’s a good time to think about a different form of expression, beyond intercourse. Find new ways to connect.
Wetness now, more than ever. Most women can’t handle intercourse during treatment. Chemotherapy can be very drying, and our skin, our vaginal tissues, are just too fragile. But if you are going to try intercourse during treatment, lubrication is extremely important. Try a lube that has a trace of silicone. I especially like Yes for this purpose. A little bit of silicone can give that lube sticking power. Too much is hard for a dry vagina to clear on its own.
Slow down. Pretend you are new lovers, virgins, even. Go very slowly. Be prepared to relearn everything about to make love to each other. Kissing can change. Taste can change. Relax, take interest, explore, report, and learn.
“Not everything that is faced can be changed, but nothing can be changed until it is faced.” –James Baldwin
We've been hearing from many women who are receiving treatments for various forms of cancer: What about us, they ask. Post-menopause is one thing, but what about post-cancer treatment? Or mid-treatment? How do we maintain intimacy when we are going through chemo or radiation or when surgery has changed our bodies and the way we feel about them?
We sat down to discuss these very difficult questions with our pal and counselor, Mary Jo Rapini. Her practice gathers couples referred before, during, and after cancer treatment to talk about sexuality and intimacy and how to maintain physical expressions of love when we are sick. This is a big subject, with many possible angles, so we will break it down into two pieces: the mind and the body.
Here's part of what Mary Jo told us:
I see lots of women with breast, ovarian, and uterine cancer in my practice. I ask to see her first, before meeting with the couple together. Women have a strong protective instinct; they will put up walls when they get sick, in part to protect themselves, but also to protect their loved ones, to avoid burdening them. I will coach her to share this crisis. That protective sense turns out to be too distancing. Whatever she is going through, whatever she decides for her course of treatment, the people who love her are in it with her. Their world is changing too, and it’s important to respect that and bring them along on the journey, consult with them. It's important to have a team in this fight.
When a couple comes to me mid-treatment or post-treatment, they walk through the door with the goal to restore their sex life. The first thing I do is to slow them down, to hit the reset button. I give them a list of things to think about that goes like this:
My focus for couples at this important time is to feel pleasure and relaxion first, before working on feeling excited. Excitement is exhausting, and exhaustion can lead to failure and frustration. I ask them to just flat out remove the goals of intercourse and orgasm from the picture. I promise we will get to these, eventually, but for now, let’s not worry about it.
I had an aneurysm that nearly cost me my life. For me, orgasms changed a lot. For one thing, they made my head ache. With a clip on arteries in my brain, and my blood flow trying to figure out a new path—orgasm took a lot out of me. Sex didn’t give me the energetic feeling I used to have. Instead, orgasms robbed me of energy for the rest of the day. A lot of my cancer patients tell me that intimacy tires them, so planning is important.
A recovering cancer patient has to plan how she will spend the little energy she has on home and health and relationships. This is a very important adjustment, especially if a couple has always enjoyed a spontaneous sex life in the past.
I prescribe a lot of hand-holding and hugging. We know the importance of hugging now, how it builds and maintains bonds for us. Most men will tell me that when their partner is sick, this is what they miss more than anything. The worst thing people can do when they can’t have sex is to withhold all touch. When a couple only touches as a pre-cursor to sex, touch can be loaded with expectations, and we need to break through that. We need to experience touch as a pleasure in itself.
During treatment, during chemo and radiation, just take intercourse off the table, but replace it with lots and lots of touch. Hand holding, back scratching, feather-brushing, rubbing hair, petting. Have fun touching, kissing, necking, without the worry of failure. Just revel in closeness.
Once you’ve gotten this connection really going, add water. Because water is relaxing. Shower together. Or take a bubble bath (but stay away from very strong scents). Light candles, bring in soft music. Focus on enjoying each other. Wash each other. Especially, wash each other’s feet. When something feels especially good, say so.
When you are in treatment for cancer, self exploration is really important. Experiment with self touch, especially where you have had surgery. Touching helps you deal with grief of loss and letting go. If you have lost a breast, you need to feel that void and be able to grieve it. Whether to include your partner in this exploration is entirely your choice, but it can very helpful for both you and your partner to join in this exploration and support you in your grief.
With any kind of an illness, the ill person asks, “Who am I now?” A serious illness changes the self, sometimes just a bit, but often profoundly. And if one self in a couple changes, then it follows that the couple’s sense of couplehood changes. Talk together about the changes you experience and notice.
A healthy partner often feels guilty about wanting sex; he knows a sick partner doesn’t have energy for sex. The healthy partner is a caretaker and not a lover right now. Talking about that is very helpful and important. Getting a counselor to talk with both or either of you during this time of adjustment can be the best investment you’ve ever made.
If you are sick, don’t underestimate your lover. We are all pretty good at putting our sexual needs on the shelf, as long as we feel loved. The most helpful way to show your love is through touch. Touching can make talking more available. Some things you hate to tell your partner. But if you are touching them while you talk, there are moments when the communication is so authentic, you will find you can say anything. And that is the sound of real intimacy.