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Recovery

Catherine Boulay Foundation Learn About Cancer

You did not think you could make it, but somehow you managed to muddle through cancer treatment and recovery. You have arrived at a much brighter and gentler part of your journey: cancer remission. All measurable cancer is gone: scans are clear, blood work is normal and your examination is perfect.

Many find themselves still somewhat unsettled. Those lingering fears about cancer returning are still hard to shake, especially before a doctor’s appointment. You may have residual long-term physical and emotional effects from your cancer or its treatment. Your body has changed as a result and you may have special needs. You may feel guilty that you have done so well when others around you may not have—the so called survivor’s guilt.

It is likely that you expected this portion of your journey to be a piece of cake. Granted, it is far easier to take time to enjoy the scenery and rediscover your passion, but there is work to do. This section will help you cope with the aftereffects of treatment and the new directions your life will take.

“Hope is a waking dream.”

Sexuality

Woman’s cancer changes sexuality. I know because I survived a cancer that involved my cervix, ovary and breast; and I listen to the stories of other women who ride the unpredictable cancer waves. When I say that sexuality changes, I mean that everything we associated with being sexual is altered in complex ways as our bodies, minds, spirits and relationships respond to the disease’s shifting demands. Being sexual includes the sense of one’s self in one’s body, one’s identity as a woman, and one’s ability to give and get sexual pleasure. Sometimes, we think about intimacy as being synonymous with sexuality and certainly the two ideas are closely related. For now though, perhaps we can talk about sexuality from the skin inward to our conscious ways of knowing ourselves. The consideration of intimacy or sexuality from the skin to the connection with the other might be left for another time. It is, after all, that very understanding of ourselves as powerful, sexually healthy humans that cancer threatens first.

When talking about being at home in our bodies, I mean that familiarity, easy sense of life force and robustness of energy that unfolds as we live, move through space and interact with the world around us. As we change over time, our bodies accommodate gradually, beneath our awareness; and we are continually at home. Within a certain range, we feel pretty much the same today as we did yesterday. This provides a sense of assurance that we are capable of just doing the things we intend to do with predictable effort. The ability to just settle into our bodies and to experience ourselves without noticing ourselves is essential for sexual pleasure. In fact, the most common reason that some of us have trouble enjoying sex is that we are always self conscious—always worried about whether we look right and perform right. Cancer and its treatments sometime make us feel like aliens in our bodies. There are incisions, draining areas, scars and tactile memories of pain associated with surgeries. Chemo often drains energy, has non-descript symptoms called malaise, sometimes alters our sense of taste and may make the whole surface of our skin feel different to ourselves and to others. Likewise, radiation treatments tire us and may burn areas of our skin surfaces. Psychologically, especially during treatment, our focus is on surviving and figuring out how to navigate the ever changing landscape of new symptoms.

Just when we think we are getting comfortable again, a new somatic experience occurs. Far into recovery, we struggle with longing for the easy predictable home of the body that we remember while being dismayed with and grateful for the new body we actually have. Sexual recovery in this vein involves coming home to and preferring the new body. That means learning to prefer the feel of scarred skin surfaces and areas of numbness, accepting one’s present level of robustness, recovering from worrying about what our sexual partner thinks about the changes in our beings, and becoming conscious of what we need and want given our new selves. Only then can we recover that easy sense of being in which we can surrender to sexual pleasure.

Gynecologic cancer often challenges feminine identity. Many of us will complain, “I just do not feel like a woman anymore”. For some, the treatments pre-empt fertility before the completion of child-bearing. Many experience premature menopause and are faced with the losses associated with a transition that should occur later in life. Almost all of us experience shifts in our roles as mothers, wives and daughters. Cancer dashes many dreams. Chief among them is the dream of an easy decision to have a child in the future. Even if eggs are saved and the uterus is left intact, conception becomes complicated. Let’s face it—there is nothing very romantic about the exam table and a variety of invasive instruments. If the capacity to have a biologic child is interrupted because eggs could not be harvested or the ability to carry a pregnancy was nullified because the uterus was involved in the treatment, the route to parenthood becomes even more complex. The well-meaning advice of others about adoption or being satisfied with the present family muddies the numerous issues connected with alterations in fertility.

Begin to Address This Issue

  1. Become familiar with the options surrounding fertility for you in particular. Avoid rejecting any particular avenue at the onset of your deliberations.
  2. Discuss or record your thoughts and feelings about the options and begin to reduce issues from one big problem – it seems impossible to have a baby now – to smaller problems that might be solved – we might have to get a donor egg.

For most women, menopause is a gradual process spanning 8 to 10 years. For many survivors of gynecologic cancer, menopause is an abrupt process that happens with surgical removal or chemical ablation of the ovaries. This abrupt menopause contributes to the issues previously discussed about feeling different in one’s body. It is generally thought to be the major contributor to loss of sexual interest and to vaginal dryness and pain that are common among survivors. In addition, the loss of bleeding in younger women can be associated with worry about loss of value and worry about aging. The topic of menopause in general is beyond the scope of this writing. The issues of dryness and pain are covered in Increase Libido. There is no clinical explanation that fully accounts for the loss of sexual interest in cancer survivors. Many will point to hormonal depletion. However, the ratio between estrogen and testosterone changes in a way that might favor increased sexual interest.

Exercises

“Laughing is good exercise. It is like jogging on the inside.”

  1. Look at your new body in a full length mirror, beginning with your hair, and tell yourself what you like or do not like about each feature. If you get to a feature you do not like, say kind things to that feature. For example, if you look at your belly and say, “I hate the way my belly is scarred and uneven”, think about the way in which your belly skin color may be very pretty or maybe the way its skin surfaces have healed since surgery.
  2. Buy some body butter or lotion in your favorite fragrance and spend 5 minutes every day gently massaging areas of your new body that feel different than your old body. Become familiar with the sensations and give them pleasurable names.
  3. Map your energy by picking a certain time of day and giving it a number between 0 and 10 (0 being exhausted and 10 being the energy level you remember having before cancer). Note how the pattern changes over time. Gentle stretching and light exercise has been shown to improve energy. Avoid big disparities in your level of exertion; increase your activities gradually over time.
  4. Write a letter from your new body to your old body. Tell your old body what you miss and admired about it. Explain how changing it was necessary for survival. Write a loving letter to your new body, encouraging it in ways it needs encouragement.

Increase Libido

  1. Spend some time every day remembering specific incidents in which you experienced intense sexual attraction. Focus on recalling the thoughts, feelings, circumstances and sensations.
  2. Do not want for desire to return. Challenge yourself to schedule pleasure times with your significant other. Experiment with all of the surfaces of your skin focusing on the sorts of touch that you like. Do not rush to intercourse, dabble with pleasure. Desire comes back in the context of positive reinforcement.
  3. Experiment with kissing.
  4. Grieve for your old libido but do not idealize it. Claim your right to become sexual in a new way.
  5. Never participate in any painful activity.
  6. Ask your doctor to check the medicines you take to be sure that they are as libido friendly as they can be.
  7. Become increasingly mindful of your responses to sexual stimuli. Avoid shutting down desires because they are “improper”. Remember there is a difference between thinking and acting.
  8. Use your sense of smell. It is primitive and often the smell of a partner’s skin is very erotic.

Even with a pretty good libido, there may be changes in our sexual responses. Signs of arousal may no longer include vaginal moisture. Vaginal tissues might become thin, fragile, dry and not as elastic as they used to be. This sometimes causes pain and bleeding if we try to have intercourse. Less often, the sensations in our vulvas or clitorises may be altered by the side effects of chemotherapy or by nerve damage. This contributes to discomfort and may interfere with orgasmic pleasure. For a few of us, a change in the actual structure of our genitals makes intercourse and/or orgasm impossible. All of the things that can be done to improve sexual function on this level involve being committed to change. Changing our sexual routine takes courage, time and persistence. It also takes a leap of faith in our partner’s willingness to cooperate and to want the same outcomes we want.

If you have interference with vaginal moisture, start by becoming committed to maintaining your tissues like you would maintain a Steinway Grand Piano.

  1. You may be a candidate for local estrogen replacement that will restore some of the elasticity and ability of your vagina to become moist during sexual excitement. Check with your physician.
  2. If you are not eligible for estrogen replacement and with the approval of your physician, use a water soluble vaginal moisturizer every other day or as indicated by the manufacturer. You can buy these products without a prescription in any drugstore. Replens and KY Beads are examples of two popular moisturizers. This is not meant to get your vagina in shape for intercourse. It is just meant to keep the tissues in a closer to normal state of moisture.
  3. Refocus your sexual practices on pleasure instead of vaginal penetration—learning a variety of ways to reach orgasm. For the most part, your clitoris works well; it’s just your vagina that presents a challenge.
  4. When you want to try intercourse, use lots of lubrication. Its messy sex or no sex when it comes to using a fragile vagina. Save or procure a vaginal applicator. Use a water soluble lubricant—KY Jelly, Astroglyde—not Vaseline. Put an applicator full of lubricant one inch inside of your vagina. Remember sex happens from the opening of the vagina up, so putting lubricant way up inside does not help much. If penetration still hurts, put the second applicator full in as far as is comfortable. Repeat one more time if discomfort persists.
  5. If you have sensation changes, employ other pleasure zones in addition to your clitoris (nipples, lips, tongue and finger tips have good sensory nerve supplies) to increase pleasure. You may need extra stimulation applied more directly to the clitoris than you can get with intercourse.
  6. Changes in genital structure or more complicated issues require professional help.