Some people find it easy to talk about their feelings. Others may never feel comfortable. You need to decide when you are ready to talk. It’s OK to tell people you’re not ready to talk and that you’d rather wait for another time. Try not to put it off for too long. Talking about your feelings to a good listener is helpful.

Your family and friends may try to support you by putting on a happy face or by being overly caring. They may deny your illness, or play down your anxiety or symptoms. Let your family and friends know when their behaviour upsets you. They will probably appreciate some direction on how to act.

Sometimes talking to family and friends isn’t enough. You may want to talk to other people, such as:

• nurses: support and assist you through all stages of your treatment
• social worker, physiotherapist and occupational therapist: link you to support services and help you to resume normal activities
• psychologist and psychiatrist: talk with you and your family about your worries. They can help you figure out what upsets you and teach you ways to cope with these feelings. Psychiatrists can prescribe drugs if you are depressed
• support group: offers support and information to people with cancer. Tele-counselling refers to support group meetings that take place by telephone
• pastoral care worker: helps you explore spiritual concerns.

You may not want to talk about your fears and concerns with family and friends. This may be because you think you don’t have the words to describe how you feel, or you fear breaking down if you talk. You may also want to avoid being a burden to family and friends or fear appearing as if you are not coping.

Research has found that support helps people adjust to the diagnosis. The longer you avoid communicating, the harder it will be. If you feel your family won’t understand, join a support group or talk to a health professional.

How you might feel after diagnosis

Cancer treatment can change the way you feel about yourself (your self-esteem). You may feel less confident about who you are and what you can do. This is more common if your body has changed physically, but occurs even if it has not.

Dealing with the cancer diagnosis and the treatment can make you feel like you’re on an emotional rollercoaster. You may not be able to imagine yourself being in a sexual situation after what has happened to your body. If you are single, you may feel anxious about initiating a new relationship. You may feel angry if you are now unable to have children.

These feelings are common, and can affect your self-esteem and your attitude towards intimacy. It will help to talk about how you feel with your partner or other women who have had cancer.

Some people find that physical activities – sports, dancing classes, exercise – improve their body image. Creative activities such as painting, playing music and craft can also increase your self-confidence.

Coping with changes in appearance

Changes in your appearance after cancer treatment can affect how you see yourself (body image). Body image may not depend on how you look but how you think you look. A change in body image may not affect your ability to have sex but it may make you feel less sexual.

Tips:

• Give yourself time to adapt to what you’ve been through.
• Draw attention to your good points with clothing, make-up or accessories.
• Consider wearing a scarf or wig if your hair has fallen out from chemotherapy.
• Try to stay active and exercise as regularly as you can.

Impact of diagnosis on family and friends

Cancer is difficult for everyone it affects. Your family needs to adjust to the diagnosis too. They may feel uncomfortable because they don’t know what to say, but feel they should say something. They may be worried about how you will react and wonder what to do if you cry.

How your family communicates now may depend on how they have always communicated. Families who frequently share their feelings may be better able to talk about the disease and the changes it brings. Families in which each member solves problems alone, or one person has played the major role in making decisions, may have more difficulty communicating.

As you express your own feelings, remember that others may need to do the same. They may experience similar fears and anxieties, and need as much information and advice as you do. Family members may feel angry too. They may express their own hurt at your outbursts, at the possibility of losing you, and at their inability to do anything about the disease. They may also fear how the illness will change their lives.

Often, family members are ready to talk at different times. Give them the space to talk when the time feels right.

If your family members have difficulty talking about cancer to one another, it may help if they speak to a counsellor or the hospital social worker. If family members deny the reality of cancer or refuse to discuss it, encourage them to come with you to the doctor or the hospital when you are having treatment. This may help them accept your illness.

Easing the way for friends

Helping friends feel at ease can be difficult. At a time when the focus should be on you, you may resent having to do some groundwork to get the support you need.

Often, friends need direction on how to behave with you. They might not be sure that you want company. They might call to ‘see how things are going’, then add as they hang up the phone, ‘Let me know if there’s anything I can do to help’. Take the opportunity to let them know how they can help. Tell your friends exactly what you need from them – be specific. If you can think of something they can do, you’ll be doing both of you a favour.

Cancer can change friendships. Some friends handle it well; others cut off all contact. Friends stay away for different reasons. They may not be able to cope with their feelings or know how to respond to a change in your appearance. Your friends may still care for you, even if they stay away.

If you think that uneasiness rather than fear is keeping a friend from visiting, call them to help ease the way. Remember that you can’t always deal with all the reasons why people avoid you; some still believe that cancer is contagious.

Sometimes you have to be honest with yourself – are friends staying away, or have you withdrawn from them to avoid talking about your fears and anxieties? You may find that talking about your illness helps you cope with it better.

Going it alone

Some people live alone or have no family. This may make them feel lonely or that they have no one to live for.

If you would like company, support groups provide some comfort or offer the encouragement you need to stay positive.

Impact of diagnosis on partners

What you as a partner can do

Cancer treatment or surgery can change your partner’s body. Areas where touch used to feel good may now be numb or painful. Some of these changes will go away. Some will stay. For now, you can figure out together what kinds of touch feel good, such as holding, hugging and cuddling. Your partner needs to know that you still love her and find her attractive. Remind yourself of her other qualities: sense of humour, intelligence or personality.

Talk to your partner. Ask her to tell you or show you what feels good or what areas are sensitive to touch. You might feel awkward about sexual contact because you think your partner is not ready for sex or that physical contact may hurt her. These feelings may affect your libido or your ability to maintain an erection (impotency). These effects are temporary and will improve with time.

Make dates. Many couples find that it helps to plan special occasions. Some days may end up being better than others for these dates, depending on how your partner feels. So you may need to be OK with last-minute changes.

You don’t have to be fancy. It’s about spending time together. That can mean watching a video, going out to eat, or looking through old photos. It can be whatever you both like to do. You can also plan these dates to include other people, if you miss being around others.

A counsellor can help you find ways to help each other. There are many who deal with intimacy and sexuality issues with cancer patients.

Call the Cancer Council Helpline on 13 11 20 for more information, or talk to your treatment team.

Women in a same-sex relationship

You may feel that your sexuality isn’t mentioned when discussing the effects of treatment on sexuality. Many of the issues are the same for you as for other women. You may also feel distressed by the impact on your body image, sexual functioning and fertility.

The different nature of your sexuality may help you cope with changes in sexual functioning after cancer treatment. Receiving pleasure from different forms of sexual stimulation and not always having to rely on penetrative sex may help you continue your sex life, if penetrative sex is too painful or just not possible for a while.

Tips:

• Try to be open with your doctor about your sexuality. This will help them understand your needs. This will be easier if you find someone you can trust.
• Take your partner along to doctors’ visits. This will show your doctors who’s important to you, and your partner can be included in discussions and treatment plans.
• Talk to someone who has a good understanding of same-sex lifestyles. Call the Cancer Council Helpline on 13 11 20 for suggestions.

What if I don’t have a partner?

Finding a new partner can seem daunting after cancer treatment. You may be worried about how a new partner will react to your cancer, even if your body appears unchanged.

Deciding when to tell a new partner can be difficult. You may want to wait until you’ve been out a few times and feel it could develop into a relationship before sharing the information. It may help to show them any body changes before any sexual activity so that you can both get used to how that makes you feel. Ultimately, you need to rely on your own judgment about what to say and when.

If a new relationship doesn’t work out, don’t automatically blame the cancer. Remember that not every relationship worked before you had cancer. Sharing your concerns with someone who has been in a similar situation can help.

Sexuality, intimacy and cancer

Having cancer doesn’t mean you are no longer a sexual person. However, treatment such as surgery, chemotherapy and radiotherapy can affect your sexuality. This includes your interest in sex, your ability to give or receive sexual pleasure, how you see yourself and how you think others see you. Some of these effects are temporary, whereas others are permanent. All can be managed or controlled.

As individuals, people have different ways of expressing and defining sexuality and intimacy, and they also place their own importance on these needs.

Some people may feel an increased need for sexual and intimate contact for reassurance. Some may be less interested in intimacy and sex, or feel that these things are temporarily less important. Others may feel too tired or sick to want sex, or feel that they are less sexually attractive to their partner because of changes that cancer and its treatment have caused to their body.

If you are concerned about changes to your sex life, it is important to talk to your partner. He or she may feel that, if they raise the topic, they might place too great a demand on you or make you feel guilty.

You can also talk to your health-care team about the potential challenges you may face having vaginal cancer. Knowing what changes may occur, and addressing them if they affect you personally, will help you overcome or adjust to the changes.

Effects on your sex life

You don’t need your uterus to have sex, but treatment for vaginal cancer can affect your sex life. Many of these effects can be prevented or treated.

• Lack of interest or loss of desire for sex. Low libido is common during cancer treatment. Sometimes it can be brought on by anxiety and worry about your diagnosis, rather than the treatment. Libido usually returns after treatment is over.
• Temporary pain. After a hysterectomy, you will have to wait several weeks before having sex again. In the meantime, kissing, caressing and touching can also be pleasurable.
• Vaginal tenderness and narrowing. If you receive radiotherapy to the pelvis, it can cause the vagina to become tender, shorten and narrow. To keep your vagina open and supple, use a dilator, which is a tube-shaped device made of plastic or rubber. Your health-care team can show you how to use a dilator. Apply a water-based vaginal lubricant to relieve painful irritation. Avoid Vaseline or other oil-based lubricants because they may cause irritation. If you are ready and able, have regular gentle sex to help widen the vagina.

Tips:

• If fatigue is a problem, try different times of the day to be intimate.
• If you are experiencing low libido, talk to your partner about how you are feeling. They need to know when you feel ready for sex and ways to help you get in the mood.
• Although sexual intercourse may not always be possible, closeness and sharing are vital to a healthy relationship. Explore other ways of sharing intimacy and showing affection for each other, such as touching, holding, hugging and massaging.
• Stimulate and help your partner reach orgasm.
• Take more time over foreplay to help the vagina relax and become well lubricated. This will make penetration or intercourse less painful.
• Try different sexual positions if your usual ones are uncomfortable. Use cushions or pillows to support your weight.
• Suggest a quick lovemaking session rather than a long session.

Regaining sexual confidence

For most women, sex is more than arousal, intercourse and orgasms. It involves feelings about intimacy and acceptance, as well as being able to give and receive love.

If we are not comfortable with the way we feel about our bodies, this may affect our confidence and desire for sex.

Some women worry about being rejected by their partner, or any new partner, because of changes to their body, whether these changes are visible or not.

It is sometimes difficult to communicate sexual needs, fears or worries with your partner in an intimate relationship. After treatment to the vulva, you may find it even more difficult, but you may be surprised and encouraged by the amount of tolerance, trust, tenderness and love that exists between you.

However, problems can arise because of misunderstandings, differing expectations, and different ways of adapting to changes to your sex life. If this happens, you may find counselling helpful, either with your partner or on your own. You may be able to work through these challenges towards a new closeness and understanding.