Supporting Your Partner through Ovarian Cancer

This booklet is for the male partners of women living with and having treatment for ovarian cancer.

The role of the male partner is often a challenging one. Men experience their own grief and loss as they support their partner through diagnosis and treatment. Male partners may not see themselves as a major part of this process, but they often are.

Studies indicate male partners often become the primary caregiver in this situation, yet the full impact on them of the diagnosis and care giving is not fully recognised. And there is little information and research focusing on the individual concerns and experiences of males whose partners are living with ovarian cancer.

This resource explores the issues affecting male partners, as well as providing ways to cope with the physical, emotional and practical impact on you.

Why this booklet is addressed to male partners

This booklet is based on research showing that men lack specific information to address their needs. They have unique issues and say they feel more comfortable acquiring information and discussing things together, as they share and learn from each other.

All our other resources and support groups are open to all partners of women with ovarian cancer including female/non-binary. All partners may find useful elements in all of our resources, which can be found on our website.

Ovarian Cancer Australia is committed to understanding the experiences of all people who face ovarian cancer and its treatment, throughout Australia, and to providing information and support wherever possible.

Facing cancer together

Growing evidence shows that cancer is being described as a ‘we-disease’. This means the diagnosis, treatment and care of ovarian cancer also significantly affect the partner, family and friends of someone with ovarian cancer. Both the woman with cancer and her intimate partner may suffer psychological distress. To get through this together they may each need individual support, as well as within the relationship.

There are gaps in the available support for men in this situation. Many male partners say they feel alone, isolated, anxious, overwhelmed and uncertain how to care for themselves and their own emotions, along with those of their partner going through ovarian cancer.

Each partner has an individual experience, and whilst the level of anxiety may be stronger or weaker in different areas for each person, the male partner’s desire to do their best for his partner with ovarian cancer is generally the overriding consideration ... just [do] the best that you can achieve and use the support mechanisms in place to assist, and ask for help as well.

You want to help but you might not know how to. You might be used to being in control, and realise that now you are not. This can be unsettling and frightening. You want to provide solutions but often there isn't one. Cating for a sick partner, even when you love them, may be accompanied by feelings of burden and fatigue.

One of the most overall difficult feelings I had was a feeling of inadequacy in not being able to fully understand the effect of the cancer on my partner, how it was going to play out, and in the initial stages what sort of support my partner needed.

In this booklet we explore how male partners can gain more support, guidance and recognition so they can better understand and care for their own needs while supporting their partner.

They [health professionals] don’t seem to see the partner as a major part of the process, and I think we are.

Being a carer and a male partner

Many men believe caring for their partner during illness is a normal part of the relationship, and they are happy to do this. They don’t see themselves as ‘carers’. But the reality is most men will become the full-time carer of their partner with ovarian cancer.

Support for carers of people with cancer is widely available, but there is a lack of support specific to male partners who are carers. While a lot of the information in this booklet will apply to all carers of people with cancer, our aim is to focus on the impact on male partners.

A diagnosis of cancer affects a person’s whole life and the lives of those around them.

Everything feels like it is turning upside down. Everyone may feel uncertain about the future. Work, family and social life may dramatically change. While you are likely to be deeply worried about your partner, you may also be taking on new responsibilities and ‘juggling’ more than usual. Both you and your partner can have common or quite different feelings during this time and may be unable to easily communicate this to each other.

Suddenly you may feel you must be the stronger one in the relationship. Your needs may seem unimportant now in comparison to what your partner is going through. But being able to take care of your own needs is extremely important, and also puts you in a better position to care for your partner.

I had to blend into the new reality, accept the situation and work within the parameters of my new world.

An ovarian cancer diagnosis is generally quickly followed by some weeks of rapid decision-making, medical appointments, treatment and recovery. Both you and your partner will be trying to take this in, and you are both likely to feel overwhelmed with emotions. The most common psychological impacts/responsibilities on male partners tend to be about:

• medical issues

• practical issues

• emotional issues

• work, study and money

• sexuality and intimacy.

Even though it took some time to accept the reality of my wife’s diagnosis, I saw that there was no choice as my partner had to begin treatment as soon as possible. Acceptance just happened in the background.

Medical issues

You may have to:

• monitor and record symptoms, treatment regimens and/or medications and their side effects for your partner to report to medical staff

• organise medical appointments, scans and collection of medications

• attend all your partner’s medical appointments with her

• navigate the healthcare system and advocate for your partner to ensure they are getting the best possible care

• develop your own medical knowledge around cancer and treatments.

Fulfilling these responsibilities can be draining and a burden, even if you want to do it. You and your partner will need to decide what each of you feel comfortable taking responsibility for. It may become a full-time job for you, and you might face having to take time off, or even quit your own employment to manage your partner’s medical care. Emotionally and financially, this is likely to be stressful. The level of responsibilities can change over time, depending on the pathway of your partner’s treatment.

Practical issues

Male partners usually find their practical role within the relationship and the household changes when their partner is diagnosed with cancer. You may have to take on more of the day-to-day tasks you previously shared with your partner. You may need to:

• do extra home duties such as cooking, cleaning, shopping and paying bills

• assist your partner with hygiene care, eating and dressing

• care for the children more frequently (if you have children)

• be around more for other family members and pets

• become the family’s only ‘taxi’ service to take kids to school and sport activities

• organise the family’s financial and legal needs.

Emotional issues

The emotional impact on you as a partner is often complex and exhausting. You may find yourself being more responsible for:

• ensuring family and friends are kept up to date about your partner’s treatment and care – endless phone calls, texts and emails can become very tiring and can often involve having to deliver sensitive and upsetting information

• meeting the social, entertainment and emotional needs of your partner, children and other family members

• supporting, encouraging and reassuring your partner about her treatment, side effects, care and future.

You may at times feel resentful and angry about the changes to your life. Or there may be times when you and your partner have completely different feelings about the situation. For example, you may feel quite optimistic one day about the future, while your partner is feeling very low in mood, or vice versa. Yet at other times you will both be on the same page. We discuss these feelings in more detail further on in the booklet.

Sex, intimacy and your relationship

• Intimacy and sexuality are significant challenges and are common unmet needs of male partners of women with ovarian cancer. Ovarian cancer and its treatment often cause changes to a woman’s body and her feelings towards her sexuality and ability/desire to be intimate. Male partners have expressed they also often face unfavourable changes in their sexuality, sexual desire and functioning. If both partners are finding intimacy and sexual activity difficult, it is likely to affect the couple’s overall communication and relationship.

We discuss sexuality, relationships and intimacy in more detail later in this booklet.

Work, study and money

• Having to take time off work or study due to your partner’s illness may be confronting and cause severe anxiety about your financial situation. Depending on your situation and employer, it can become difficult to maintain regular income. You may not have carer’s leave available and you may wonder:

• How long will I be off work?

• How will we manage financially?

• Will my employer or study institute allow me to return when I am ready?

• What policies are in place for partners who take time off work to care for a loved one?

If your partner isn’t working, this may increase the financial impact for your family. You may have to face significant financial burdens. This is sometimes called ‘financial toxicity’ – the financial side effects of cancer.

Some difficult choices might have to be made in your situation for the good of both partners. For some men, continuing to work full or part time is good for financial and emotional reasons. Being at work will allow you to think about something other than your partner’s health. It can help balance your emotional and mental health with that of your partner’s.

Every family’s circumstances differ and for practical reasons you may not be able to make the choices you would otherwise hope to.

There is support available that you may like to explore.

• Your partner may be able to access some of their superannuation (early release of money). Or they may be eligible for disability or income protection insurance payments through their fund.

• The social worker at the hospital where your partner is having treatment can advise if they are eligible for government financial assistance or help with transport costs.

• A financial counsellor can help with managing finances. The National Debtline can help with free financial counselling (https://www.nationaldebtline.org/).

• You may be eligible for paid carers leave and/or Centrelink carer payments.

• You may be able to delay payment of some bills. Look into concessions, payment relief or rebates for people who are sick.

There is no ‘normal’ response to finding out your partner has cancer, but most men say it feels like everything has changed.

You may feel like there have been significant changes to your mental health, your relationships, and your ability to function day to day and care for yourself and your partner. You may also be trying to find the time to understand your own feelings and thoughts and how you will manage all that is happening.

Uncomfortable feelings (emotional pain) are like any physical pain – and your body’s way of saying, ‘Listen up, pay attention’! They will influence what you do and how you care for your health. Long term, ignoring these feelings can cause resentment and other difficulties in times of acute stress, which may happen often while your partner is having treatment.

Positive changes such as closer relationships, changes in priorities, personal and spiritual growth, along with greater empathy, flexibility and patience are among the positive feelings male partners also talk about when they are tackling their partner’s cancer diagnosis and treatment together.

I found that updating family and close friends on my wife’s ongoing treatment and condition helped me cope, emotionally.

In this section we address several sensitive and difficult issues including depression and suicidal ideation. The information may be traumatising for some people and stir up uncomfortable past emotions. Please seek urgent help if you are having thoughts of self-harm or suicide.

Anger and resentment

You may feel angry about your partner’s diagnosis, infertility, changes in your role within the relationship and sex life and/or having to give up your work and social life to care for your partner. You may not feel angry all the time and the feelings are likely to pass.

No longer having time to do the things you enjoy can cause resentment towards your partner. Your partner may not appear to be grateful for the things you do or acknowledge that you are also affected by her cancer (in similar and different ways) as much as she is.

Your feelings are normal, but it is important to recognise the warning signs of anger and resentment. Having less patience than usual, pacing, obsessive thoughts of revenge, feeling agitated, shouting, clenching or grinding your teeth or making a fist, knots in the stomach, and using physical or emotional violence are all signs of anger you should not ignore.

There are things you can do to help manage anger.

• Stop, pause, take several deep breaths and try to work out what is causing your anger.

• Think of ways to manage your anger differently to help you remain calm.

• Exercise (gym work, running, sport), breathing exercises, mindfulness and meditation are great ways to help release emotions, and can help with anger.

• Talk to a trusted friend, relative or health professional (e.g. GP, counsellor, social worker) about your feelings.

When viewed through the lens of mindfulness, anger is just energy that is neither good nor bad. It is only when we engage with anger, hold onto it, become consumed by it … that things can become problematic.

I find that ensuring that I have something to look forward to helps me and my partner cope. Taking on golf lessons and regular yoga classes have helped get me through.

If you are:

• angry most of the time and/or it is affecting your day-to-day life

• unable to control your anger

• thinking of wanting to harm yourself or another person, or acting on these thoughts

• using alcohol or drugs to calm your anger

It is important to seek medical help immediately. We also suggest finding ways to transform your anger before it feels out of control.

Sadness, anxiety and depression

Life might feel uncertain; plans change constantly, your loved one is unwell, and you have no guarantee when this will change. Your energy levels can go up and down depending on what is happening each day. You can have good and bad days just as you did before cancer, but these changes can now be much more intense. Caring for your partner may sometimes become so demanding that you feel anxious, upset and depressed. Male partners often report these feelings during and after their partner’s cancer treatment.

Men often find it hard to express their feelings. They don’t want to appear like they are not coping, so they cover up their emotions to avoid being criticised for not being able to handle the situation. Expressing your vulnerability may be easier with a medical or mental health professional. We discuss seeking help, and the barriers men face to doing this, later in the booklet.

If you have any of the following symptoms, you may be suffering depression:

• changes in your sleep pattern (not being able to get to sleep, waking early)

• changes in eating habits (eating less or more)

• becoming angry, irritable and upset more easily than usual

• decreased desire to see people, go out, do things you usually want to do

• loss of enjoyment in activities that are usually enjoyable

• loss of libido

• using drugs and/or alcohol to hide your feelings.

You might find yourself with suicidal thoughts, but help is there, don’t be a rock – seek help and do it early and regularly.

If you think you may be depressed, talk to your GP. There are effective treatments and support that can help you. Your GP may suggest you see a counsellor or psychologist who specialises in treating people impacted by cancer. Or they may recommend medication to help with your anxiety and depression. It is not a weakness to seek help when you suffer depression and anxiety.

Exhaustion

Caring for your partner with cancer can be exhausting (emotionally and physically) and finding rest times can prove difficult. Driving to and from medical appointments, long waits in hospitals, having to carry out more household chores and caring for the family more than usual, worrying about your partner’s illness and any financial strains can be overwhelming and exhausting.

Pace yourself, ask for and accept help, and take time out to rest and relax where possible. Read the section later in this booklet about ‘Caring for yourself’.

How the hell can I maintain a positive attitude when I am dealing with this illness, taking on more household duties, maintaining an income? It is hard but try to prioritise. Do the things that have to be done. And if you can’t, they will have to wait until tomorrow.

Loneliness and isolation

Feeling lonely and isolated when your partner has cancer is not unusual. If you are also playing a key role in caring for your partner, this is likely to increase those lonely feelings and affect your quality of life. Changes in your social and work life may mean you are not seeing friends as much, playing sport/exercising or pursuing your usual hobbies. Friends may not contact you as much as usual as they worry you might be busy caring for your partner. You also may find it more challenging to connect with others now that your life has changed so much.

Feeling lonely doesn’t translate to not wanting to care for your partner. However, feeling lonely can have a negative impact on your mental health. Prioritising your partner’s health needs and having less connections than usual to your work, hobbies and friends can cause disruptions to your:

• sleep (changes to your usual sleep pattern such as insomnia, nightmares)

• appetite (eating more or less)

• mood (anxiety)

• thoughts (obsessive and/or frightening thoughts).

Try to stay connected with close friends and make time to meet up or chat on the phone a couple of times a week. This can help you to have time where you can discuss the challenges in your life, and also time where you can talk about other things. Don’t be afraid or feel bad about accepting offers of help to give you those needed breaks so you can catch up with mates or do some exercise. Social media and phone calls are also a great way of staying connected with your friends.

Be proactive in getting out with friends for an hour or two to have a coffee or a drink, to play golf or simply walk, or do lunch somewhere. Being out with a couple of friends is very revitalising for your well-being.

Although I initially retired upon my partner’s diagnosis, I did eventually return to a part-time job. This has kept me in touch with my industry colleagues and helped me stay connected.

If you don’t have anyone you feel you can talk to, contact your GP, and ask for a referral to a counsellor or psychologist. You can also join the Male Partner’s Program at www.ovariancancer.net.au.

Guilt

Guilt is another common feeling male partners find hard to express. Guilt often happens when there is an imbalance between what you want to do and what you actually can do. For example, you may see yourself as being able to calmly juggle your partner’s illness, as well as care for the kids and work to financially provide for the family. But in reality, you are tired, frustrated and angry and it is all too much. Maybe you think your own needs and feelings are not important in comparison to your sick partner. Taking time out makes you feel guilty.

Guilt may creep in because you:

• don’t have cancer and your partner does

• are not as financially stable as before

• want a break away from everything

• think you are not doing enough to help your partner

• feel frustrated and angry that your life has changed so much

• want more intimacy and sex than your partner does

• are not as in control of your emotions as you would like to be.

Recognise you feel guilty, work out the cause, and act if you can. Be gentle with yourself, accept help and talk to those close to you about how you feel.

Fear your partner’s cancer will come back

Some women will go through cancer treatment and have a period when they feel well, but then the cancer recurs, and they need more treatment. This can happen several times and cause intense distress.

Worrying about your partner’s cancer coming back (having a recurrence) is one of the most common concerns for male partners of women with ovarian cancer. It can bring a deep sense of grief, loss and uncertainty. Fear of the cancer coming back is usually worse in the lead-up to follow-up appointments, scans or around the anniversary of the cancer being diagnosed, or other important family anniversaries.

It is also common to feel uncertain about the future. It is not surprising that the first things people worry about when their partner finishes treatment are:

• What if my partner’s cancer comes back?

• How do I protect her?

• Is there treatment to help if her cancer comes back?

• How will our children (if you have them), partner and friends cope?

If the cancer returns, will it be worse than last time?

These are tough questions. Unfortunately, not all of them have clear answers. Unanswered questions can leave you feeling scared, lonely, sad, depressed or helpless. You may feel unable to stop thinking about your partner’s cancer coming back, see a future or make plans. However, the answers to many of your questions may not be negative. And there are things you can do for yourself, as well as seeking professional support, to help you gradually move to more positive thoughts.

Worrying about your partner having a recurrence is one of the most common concerns for male partners and of women with ovarian cancer.

As my wife is on a two-year immunotherapy drug trial, I find that having the regular three-weekly oncologist’s appointments and following drug treatments diarised gives me a target to aim for. The fear of recurrence is very real, but we will deal with it at the time if needed.

If your partner’s cancer can’t be cured

Learning your partner’s cancer is incurable usually comes as a huge shock, even if you were aware their cancer was progressing. You and your partner are likely to feel extremely upset and frightened about what might happen next. It is very normal to feel this way.

Supporting your partner during this time can be challenging as you are both likely to have very strong emotions. Confusion, sadness and intense grief are common feelings. You may both be grieving the loss of what you expected and wanted life to be together, or you may be grieving what your partner will be leaving behind. You may not want them to feel sad or worry about how you will feel when they are gone.

Even if you know your partner’s cancer cannot be cured or their end of their life is approaching, you may still feel very unprepared. You may wonder what will happen: will they be in pain and how will they feel? You may also worry you won’t know what to do or say to support them in the best way. This can be very stressful.

Fear of your partner dying

Fear of your partner dying, witnessing their suffering, and being left alone, may also be on your mind. If you and your partner have a close and happy relationship, you are likely to want to continue life as it is with your partner, and not have to worry about re-inventing or adapting things.

You may become consumed with sadness about losing your partner, lover and mother of your children (if you have any). It can feel scary to talk about your fears with your partner, but couples often say that speaking honestly will give each other permission to do the same. It is likely you both have similar concerns and by sharing them with each other it may help strengthen your relationship and reduce the strain of always trying to hide your fears.

ADVANCE CARE PLANNING

Many people, whether they are ill or not, find it reassuring to have an advance care plan. An advance care plan allows you to write down your wishes for treatment in the event that you cannot make your own decisions. You and your partner may find it helpful to do an advance care plan together. Many couples say it allows them to talk about difficult topics such as each other’s wishes during the palliative stage of an illness and end-of-life care.

Palliative treatment is any treatment focusing on treating symptoms of the disease, rather than aiming to cure it. While palliative care is often involved near the end of a person’s life, it is of benefit for many people well before this and can be an important part of their treatment plan.

End-of-life care is care given to those who are near the end of life and who are no longer having treatment to cure or control their disease. End-of-life care includes physical, emotional, social and spiritual support for both the person with cancer and those close to them.

Guidelines and law around advance care planning differ for each state and territory. You can find more information about advance care planning in your state/territory online.

Loss and grief

By Dr Oliver Homes, Clinical Psychologist, Peter MacCallum Cancer Centre

Caring for someone with cancer presents complex emotional challenges, and this is especially the case when we talk about grief. Many people think of grief only in relation to death, but grief is a response we can have when we lose the things in life that are especially significant to us.

Not only can we grieve the loss of someone we love, but we can also grieve loss of home, time with others, future events or goals, financial security, parts of our identity and many other things. We can even grieve things that we haven’t lost yet, in anticipation of a loss that we sense is coming.

There is no one process of grief that everyone goes through in the same way. Grief can bring sadness, frustration, anger, guilt, numbness and many other emotions. It can motivate us to act and move forward, or it can leave us feeling sapped of our energy. We can grieve before, during or after the loss, sometimes triggered by reminders of the loss, and sometimes seemingly out of nowhere. In short, the day-to-day experiences of grief can be unpredictable.

There tend to be two sides of grief, one where we feel and process the pain of our loss, and the other where we attend to the changes in life and do new things to move forward. Often people notice that they will swap back and forth between these two states as they live with their grief.

It is best to allow yourself to experience both sides of grief as they arise, and support yourself along the way. Here are some things that can help when you notice grief in yourself or others:

• Allow yourself to have conversations about loss (e.g. couples impacted by cancer can share

  their grief together, speaking to friends or other men in a similar situation).

• Don’t criticise yourself for how you feel (or what you don’t feel).

• Allow yourself to cry and express your emotions.

• If helpful, organise breaks from work or usual duties.

• Allow yourself to speak about your experiences with supportive people, and ask for help if needed.

• Take care of your own health and basic needs.

• Try to stay connected with people you like and activities you enjoy.

If your grief continues to disrupt your life or is difficult to cope with, seek support from a mental health professional or grief counsellor.

Many people find that their grief never completely goes away. However, people can grow around their grief and live meaningful and satisfying lives even with the loss they carry. If we learn to recognise, accept and respond to grief, we put ourselves in a better position to support ourselves and the ones we love as we face the challenge of loss in our lives.

Fear is a normal and valid response when your partner has cancer. While it may be difficult to get rid of all your fears and other difficult feelings, putting strategies in place to help you cope may temporarily reduce anxiety and allow you to be honest with your partner. However, men tend to find it difficult to ask for help.

Burying emotions and coping alone

A common misconception is that men don’t experience feelings as intensely as women. Women tend to reach out and be able to clearly express their emotions, whereas men tend to hide or sometimes ignore difficult emotions and try to cope alone. Despite managing emotions in different ways, it does not mean men feel them any less.

Everyone feels emotions at different intensities, and men are less likely to talk openly about their feelings. But you don’t have to handle your emotions alone. Acknowledge your feelings
or the problem, and then work on finding a solution. Ask for support and embrace the services around you. Accept help from friends and family you trust.

Barriers to men seeking help

Generally, men have been discouraged from being openly sensitive. Men tend to shy away from conversations about how they feel. Some men feel ashamed, embarrassed or ‘less of a man’
if they admit to feeling sad, lonely, anxious or fearful. Being seen as weak or unable to cope is difficult for many males. Rather than admit they need help, they will often choose to bury the feelings in the hope they will disappear.

Holding these emotions in can lead to physical stress and symptoms, such as headaches, chest tightness, digestive issues, sleep disturbances, and muscle aches and pains. It can also lead to excessive use of alcohol or drugs, which is usually more destructive than helpful in the long run.

If you are having problems with excessive drug and alcohol consumption, talk to:

• your GP (doctor)

• a counsellor (find a counsellor via www.theaca.net.au/find-registered-counsellor.php or a social worker at the hospital where your partner is having treatment)

• DirectLine alcohol and drug counselling 1800 888 236.

If you have never been encouraged or shown how to understand the connection between these physical symptoms and specific emotions, it will be difficult to find the right words to communicate to your partner when you are not feeling okay. You may prefer to withdraw from socialising, intimacy and talking to your partner.

I really avoided telling Sue how I felt. I don’t think I express my feelings very well at any time. But I probably could have unburdened myself a little more to Sue, but she had enough problems of her own and I didn’t think it was going to help make me feel better or her. So, I didn’t see any benefit to it.

You may want to tell your partner how you feel but worry you will get the wrong response and cause deeper problems. Reversing old patterns often takes time, but communicating honestly with your partner can lead to a safer, more equal relationship, along with more fun, happiness and better sex. Men also say that they feel relief when able to share their real feelings, even if it does mean admitting they may not be coping. Hiding emotions is hard work – it is usually much easier to dig deep and let it out.

• Invite your partner to the conversation by saying things like, ‘Is now an okay time for me to tell you a bit about how I’m feeling?’ This can reduce the pressure for everyone, and let you feel more confident that there is space for you to share.

• Start with small steps when you are not ready to share something with your partner – ‘test the water’ by sharing your feelings with a friend or even a stranger first (online support groups are a good way of doing this).

• Push past only describing ‘how’ you feel (e.g. ‘I feel like crap’) to working out why you feel that way – ‘I am missing being intimate with my partner and I don’t know how to tell her that’ or ‘I am so tired and frustrated from having to work full time, as well as care for my sick partner and the kids’ and ‘therefore I feel like crap’.

• Seek professional support from a counsellor, psychologist or therapist to help work out the best ways to share your feelings with your partner.

  We discuss ways of managing your emotions and seeking help in the section ‘Caring for yourself.’ But remember – most feelings come and go, and their intensity reduces over time.

Most couples experience changes in their relationship and roles when a partner has ovarian cancer. As a male partner, all of these things may be different: how attractive you feel, being able express your sexuality, sexual activity, and your ability to communicate and become intimate.

Role changes within the home, your work and relationship cause stress. Your brain is so ‘full’ and you may wonder if there is space left for satisfying your sexual needs or building on your sexuality and desire for sex.

Your partner is likely to be coping with the effects of the cancer and its treatment on their own sexuality and desire and/or ability to have sex. Talking about your own needs may feel unimportant in comparison. However, for you both to feel heard and satisfied again you may need to renegotiate all aspects of your relationship, including sex. There are ways of doing this that will empower you both to express your feelings and find ways to reshape and rekindle intimacy and sex. You may need to be open to new ways of talking about and exploring sexuality with your partner.

Research shows when asked about what ‘having sex’ is most people think about penetrative sex (intercourse). But it is far more than that. Sex is what feels good for you, whether you are sexually pleasuring yourself or your partner.

Touching each other or yourself, kissing, hugging, snuggling, massage, lying beside your partner and chatting, using sex toys alone or together with a partner are among the options that give sexual pleasure.

Most women are not asked by health professionals about sexuality issues during their ovarian cancer and its treatment, yet most would like to be asked. While talking about sex, intimacy and sexuality may feel awkward and embarrassing at times, most women want to talk about how ovarian cancer and its treatment has affected their sexuality and sex life. They want to find ways to rethink, reshape and redefine what sexuality and intimacy mean for them so they can express their sexuality and have fulfilling sex lives (if that is what they are looking for).The challenges your partner may face can impact their:

• body image, self-esteem and sexual identity

• sexual function

• fertility

• sense of femininity

• sexual relationships

• mood

• desire and interest in sex.

• These changes may have begun in the months before your partner’s diagnosis due to cancer-related symptoms such as pain, tiredness, changes to the vagina, irregular periods and abdominal bloating. During treatment these difficulties may have continued or worsened because of the physical changes from:

• surgery (e.g. scarring, induced surgical menopause)

• chemotherapy and other treatment side effects (e.g. hair loss, fatigue, nausea, peripheral neuropathy).

• Many women also face psychological and social side effects from a diagnosis and treatment of ovarian cancer (e.g. depression, changes in relationships). They may feel vulnerable, possibly disappointed in themselves and be suffering changes to their body image.

Every time I hop in the shower, get dressed or put on a dress, have to put on my hormone replacement patch – I am reminded of my surgery – which is every day.

Even after treatment finishes your partner may continue to have to cope with longer-term physiological, psychological and social side effects (e.g. changes in the ability to have sex or loss of interest in sex).

It would not be hard to imagine why a woman’s desire for intimacy wanes after surgery or other treatments for ovarian cancer.

Men whose partners have ovarian cancer talk about several sexual issues they often find difficult to talk about. You may not share your frustrations for fear of seeming unsupportive towards your partner.

WHAT WILL OUR FUTURE SEX LIFE BE LIKE?

It is not uncommon, and is quite normal, to feel overwhelmed and frustrated by the changes in your sex life and what this means going forward. Fear of upsetting your partner may prevent you from discussing your concerns. But communicating your worries, and setting new goals and expectations within the relationship will improve future intimacy within the relationship.

We had to think more about being intimate and working out when it might be alright to be intimate. So, if I told Larry I am alright, he had to jump.

WILL I CAUSE MY PARTNER PAIN DURING SEX?

Painful sex is also known as ‘dyspareunia’. You may worry about whether you will cause your partner pain during sexual activity. Whether it is penetrative sex or other forms of touching to gain sexual pleasure, your partner may feel discomfort or pain related to changes to her body after treatment. It is not you who is causing the pain, but rather these changes. Early menopause due to treatment can cause hormonal changes such as vaginal dryness, which cause discomfort during sex.

Pain will usually interfere with your partner’s desire for and ability to have enjoyable sex and reach orgasm. If your partner is in pain, you are unlikely to enjoy sex either, which in turn may result in frustration or resentment towards your partner.

Sexual intercourse or using sex toys may be painful after having a hysterectomy. This operation can shorten the vagina and cause some scarring at the top of the vagina. Sex may also be painful if your partner has abdominal pain related to their cancer. Being hugged, kissed or having sex can be painful after surgery due to wounds still healing and pain around scars. Sexual positions you previously enjoyed may no longer be comfortable for your partner. And some drugs they might be taking for their cancer or pain can cause drowsiness and reduce libido.

Other vaginal changes caused by menopause and other treatments, such as dryness, inflammation or thinning of vaginal tissue (atrophy), may also cause painful sex.

WHAT CAN HELP?

You are allowed to feel conflicted about your feelings and it is important that you acknowledge these feelings. It is okay to make mistakes when trying to support your partner through painful sex. What matters is to share your concerns and find ways to help relieve your partner’s pain so you can both enjoy sex. It’s important not to direct your frustration directly at your partner who is having the pain.

Things that might help include:

• Communicate your fears: encourage your partner to talk to you about their pain and let them know how you feel.

• Use water-soluble lubricants to help with vaginal dryness.

• Enjoy a warm bath together (to set the mood) or alone (to relax) before sex.

• Your partner may benefit from taking pain relief medication before sex – talk to your partner’s specialist doctors about this option.

• Renegotiate intimacy and sexual activity. Sex does not have to mean penetrative sex – you can connect and experience pleasure in other ways such as kissing, hugging, massage, oral sex and pillow talk.

• Have a plan B – stopping and doing something else when sex is painful. For example, cooking a romantic dinner together or sitting on the sofa watching your favourite show. This will relieve the person with the pain feeling they have spoilt the moment.

• Exercise is a great way to relieve any built-up frustration and anger.

WILL WE EVER HAVE ENJOYABLE SEX AGAIN?

Many couples can have a fulfilling sex life after cancer, but it can take time as you and your partner may need to adopt a different view of what sex is. It may involve learning new ways to give and enjoy sexual pleasure. You both might make mistakes along the way but don’t give up. Being patient, persevering and practice are key to getting it right. Try to have some fun as well while you learn.

WILL OUR RELATIONSHIP SURVIVE IF WE DON’T HAVE REGULAR SEX?

Intimacy and sex are important in most romantic relationships. But there are many types of intimacy. Physical intimacy can bring you emotionally closer, but this is not always necessary for everyone. Emotional intimacy is usually essential for partners to stay connected, happy and trusting in a relationship. It allows most people to feel safe and warm and without these feelings, the relationship often breaks down.

Talk to your partner about what you both want. If you are struggling to find a way forward, and you both want to bring sex back into the relationship, you may benefit from seeking help through a professional sex therapist, sexologist or counsellor.

ARE THERE TIMES WE SHOULD NOT HAVE SEX?

While sexual desire may come and go for you and your partner during her cancer treatment, there will be times when sexual intercourse may not be possible or may need to be limited due to risk of infection, for example, if your partner:

• is having treatment that lowers their white blood cell count or supresses their immune system

• has sores in her mouth (mucositis) or sores on her genitals or anal area

• has any bleeding from the vagina or rectum

• has had certain types of surgery such as a hysterectomy (your doctor will recommend you don’t have sex for six to eight weeks, possibly longer)

• is feeling pain or discomfort during sex.

If you are having sex, and your partner is having chemotherapy, radiotherapy, and/
or biological therapy, it is important to use protection during intercourse to prevent pregnancy. It will protect you from being exposed to any of the treatments that may be still present in vaginal secretions. You will need to use contraception for at least six months after your treatment finishes.

Your partner’s medical team will be able to guide you in the right direction about when it is safe for you and your partner to have sex. It may feel difficult to ask, but health professionals accept and encourage these important questions.

WILL I APPEAR TOO DEMANDING DURING SEX?

You may worry that your needs for sex seem demanding or put pressure on your partner. Be sure your partner knows there is no pressure to have sex. Suggest giving and receiving touch, cuddles, massage or flirting , without any pressure or expectation that anything more intimate needs to happen.

Maybe take sex off the table for a while and experiment with something new. Spontaneity may also need to be on hold for a while. Be aware of how different it can feel when you touch each other without thinking of anything but enjoying each other’s bodies.

WHAT IF I AM LESS ATTRACTED TO MY PARTNER AFTER HER TREATMENT?

Maybe the intensity of your attraction towards your partner (physically and/or emotionally) has changed since her surgery or other cancer treatment.

Giving your partner time to recover and find her confidence again is likely to help with your feelings towards her. Sometimes underlying relationship issues prevent you from moving forward. If this is the case, seeking professional counselling may help.

If you and your partner have the desire to be intimate, there are always ways of doing this. This will be key to bringing ‘life’ back into your relationship.

Partners need strategies to support themselves and their own health.

Expect and prepare for changes during and after your partner’s cancer treatment. Discuss sexual health as a couple with your partner’s doctor early on to help you both understand the risks to changes to your sexuality/sex life, and ways to manage them.

The only discussion we had with our oncologist regarding our personal lives was telling us you should wear a condom after the chemotherapy.

Get educated and understand how and why your partner’s cancer and its treatment side effects will impact their sexuality, body and hormones. Knowing why your partner’s body has changed will empower you both to develop creative solutions.

COMMUNICATE

Open the lines of communication: poor communication is the number one barrier to sexual problems. Most importantly, talk to your partner and focus on achieving the same goal. Try to clear up any misconceived ideas about how each other is feeling.

You may also find it helpful to talk to a trusted healthcare professional about sexual issues you and your partner may be having. Start with your GP, who can refer you to a sexual health counsellor, sexologist or sex therapist.

SUPPORT EACH OTHER

Validate your partner’s feelings. Letting your partner know it is ok to feel bad about the changes to her body and how it functions will allow them to feel safe, supported and willing to feel comfortable to explore and regain intimacy.

Redefine sex and accept that sharing love and physical intimacy doesn’t always have to end in sexual intercourse. Hugging, kissing, massage, pillow talk and cuddling are other ways of connecting.

Permission will help your relationship: permission to seek pleasure, learn about your own body and your partner’s and to try new things (e.g. massage that does not include the genitals).

Make time for each other. Do things you enjoy and talk about things other than cancer.

Remember when you first met and how that felt. Talk about when you first met, go back over old photos and go on date nights to help to reconnect.

EXPLORE EROGENOUS ZONES

Masturbation is a natural and safe way to explore what helps you and your partner confidently enjoy intimacy and sex.

Areas of the body that are highly sensitive to being touched are called your ‘erogenous zones.’ You have these areas all over your body. In women, the clitoris, and in men, the penis and anus are usually the most sensitive. Other areas are breasts, nipples, chest, mouth, ears, neck, lower abdomen, buttocks and inner thighs. Exploring these areas alone or with a partner, rather than having sexual intercourse, may help increase overall pleasure for both people.

Sex toys and aids may help during sexual activity. Growing evidence suggests that being sexually adventurous can improve your health and relationship.

Uncertainty can weaken or strengthen your love and commitment in a relationship. If there were relationship and sexual issues before the cancer diagnosis, things may become more difficult. It will be even more important to address your problems and decide if you both want to build a stronger bond emotionally and physically.

On the other hand, a diagnosis of cancer can sometimes bring you closer together and you may decide your partner is more important to you than you thought. The reality of possibly losing your partner makes you both realise you do love each other and will fight to make things work now.

Physical problems with having sex may have been present for you before your partner was diagnosed with cancer, for example, not being able to have an erection (erectile dysfunction) or ejaculate (ejaculatory dysfunction or premature ejaculation). These issues may have been caused by treatment for your own physical or mental health issues. Due to stress, anxiety and ignoring your own needs, pre-existing sexual problems of your own may worsen when your partner has cancer.

If you have not already done so, this might be the time to seek professional sexual health and/or relationship counselling. Your GP is a good place to start to ask about referral to a counsellor.

While your partner is having treatment and receiving support from members of her healthcare team, support group and wider support network, you may feel like a bystander.

You may feel you can’t do as much as you would like to help your partner. This can be difficult if you are often used to being supportive by problem-solving and find it harder to simply be there, to talk and to listen.

There are a few important things to remember. The love, care and support you provide for your partner will be a vital part of her support network – don’t underestimate how much it means to her. If you were important to her before she had ovarian cancer, you are still important to her now – sometimes more so. But it is also especially important you look after yourself. Finding the time and mental energy to do this can be hard, but we strongly recommend you do. Don’t feel guilty about taking time out for you. It will help you to renew your energy, reduce negative emotions, and allow you to continue caring for your partner with the love and patience you intend.

Your general health and wellbeing

Your own health can decline when you are caring for someone else. You may ignore symptoms you are having as you see them as less important than your partner’s needs or you cannot find the time to deal with them.

See your GP if you are feeling unwell, anxious or low in mood all the time, or have any other health concerns. Don’t put off seeing your GP if you have symptoms that won’t go away.

Challenging unhelpful thoughts

Balancing out your fears with what really is happening or ‘might’ happen is important. Meditation, mindfulness, physical exercise and breathing exercises can all help relieve anxiety and help you manage negative thoughts.

Hobbies

Try to persevere with the things that you enjoy. If you don’t have any enjoyable pastimes like hobbies, now is a good time to think about finding one. Research shows that people who have hobbies are less likely to suffer low moods, anxiety and depression. Hobbies such as sport, woodwork, gardening, painting/drawing or watching movies can bring joy, freedom and achievement into your life.

You may have to sometimes put your hobbies on hold while you care for your partner. But it is important to have things to do and talk about other than your partner’s cancer and its treatment. Your partner is likely to feel relief to share and talk to you about something else too. You may not be able to be as involved in your hobby or sport as you were before your partner was diagnosed with cancer, but you can still stay involved, for example, by reducing or changing your role in a sport team.

Friends

Friends and social interaction are good for our mental wellbeing. Staying well and feeling well can be helped by being active and making time to be with friends and family. Talking to your best mate can be a great stress buster. Being able to be yourself and connect to someone other than your partner at this time will help counteract any feelings of loneliness and isolation.

While you may not have as much time to be with friends, make at least a weekly meet-up with a close friend. Having coffee, going to the pub, or doing some exercise together will all help release tension and improve mood.

You may find some of your friends go off the radar once your partner gets cancer. Others will step up more than usual and be a huge support for you and your partner. When friends withdraw, this can be upsetting and confusing. But some people don’t know what to do or say in this situation, so they disconnect.

Don’t hide your partner’s cancer diagnosis away. The more people know about it the less you will come across avoidance or embarrassing silences. It is happening, it is real, so it helps you that people see it as part of your life not as the definition of your life. Hiding it away tends to add to your internal stress of keeping it within you.

Exercise and nutrition

Poor nutrition and lack of exercise are linked to poorer quality of life. Being underweight or overweight can cause an increase in anxiety, depression, fatigue and decreased self-esteem. It can also affect relationships and sexuality. Regular exercise has many health benefits. It may help maintain a healthy weight and overall quality of life.

Eat a well-balanced healthy diet and try to avoid foods and drinks that will decrease energy levels. If you do most of the cooking, you could consider seeking advice from a dietitian to ensure you are cooking nutritious foods that are beneficial to both of you.

You may worry what the best foods or nutritional approach is for your partner. Often friends and acquaintances may make suggestions, and this may feel confusing or overwhelming. Your partner may have different nutritional priorities during their cancer treatment and recovery.

Talk to the healthcare team about your concerns. There is almost always access to a dietitian in the community or at your cancer centre. In general, it is important for you both to stay active and keep your muscles strong.

Make exercise a habit and part of your daily life, even if only going for a short walk around the block. If leaving your partner for prolonged periods of time to go to the gym or for a run is difficult, think about buying home gym equipment (which is often easy to get hold of second-hand). Or try other forms of more gentle exercise such as yoga or Pilates (there are online free sessions to try).

Your partner’s treatment centre may offer an exercise rehabilitation program. You may also like to include your partner in some exercise as we know this can be beneficial and help with maintaining muscle mass that may be lost due to treatment.

When you are going through a tough time you may look for ways to ‘numb’ the pain. You may be tempted to use drugs and alcohol as a way of doing this. However, these are addictive substances and often change your ability to think clearly and behave rationally. Avoid recreational drugs and consuming large quantities of alcohol as a way of coping as they will make you feel more anxious and can cause severe mental health issues.

Sleep

Committing to seven to eight hours of sleep a night lowers anxiety, increases clarity, means you are less likely to be emotionally triggered, and you are more likely to have the energy to exercise and make better food choices. However, this may not always be possible if your partner is unwell and waking at night needing your help. You may be able to catch a nap during the day if your partner is sleeping.

If sleep becomes difficult and is causing your mood to significantly change, talk to your GP who may be able to suggest ways to help you sleep.

Time alone

Alone time is different from feeling lonely. Everyone needs ‘me time’ – it is time alone to reflect, think and rejuvenate. Allowing yourself time to explore your feelings and what is going on without pressure or judgement from others will help you feel more in control. You need time where you don’t have to worry about the needs of others and can just focus on yourself.

I found my wife’s cancer to be all-consuming. In my case I went canoeing which allowed time to think, but also to look at the beauty of the river and [get] some balance in life.

Accepting help

Pride may stop you seeking help during the challenging times caring for your partner. But friends and family will want to help. Allow them to help care for your kids if you have them (e.g. pick them up from school, take them out for the day), drop meals around, do your shopping or clean the house.

Men often perceive asking for help as a weakness. Accepting help from others does not mean you have failed, or the person offering is doubting your abilities. It just means they care; they want to feel useful. Freeing up time will allow you more time for yourself, and hopefully to share more quality time with your partner.

Your support crews

You may have a few close friends as your local informal support crew who check in on your partner, provide meals, and do transport occasionally or other helpful tasks. It is important to try to set this team up as support for both you and your partner and include people you both get along with the best. For many men this includes their work colleagues, siblings, long-term mates and other friends.

While you are deep in the carer role, not giving yourself much thought, the support crew can be informally monitoring your wellbeing as well as your partner’s. Being regularly around, they will notice any changes happening to you that you may not have acknowledged. Simply having a friend ask you, ‘How are you going?’ reassures you that you are not alone and there are people around who care about you. They can step in to help when things get difficult without much organising or fuss, as well as helping you recognise and celebrate any positives along the way.

The support crew also enables you to get those much-needed breaks when they are all around and your partner is having a ‘good’ week. These short breaks give you some ‘me’ time with the chance to refresh your physical and emotional well-being.

Counselling and therapy

There are several types of therapy that you may wish to explore that we know partners of people with cancer have found helpful. It is often reassuring to learn from what others have been through and what they found the most effective ways of dealing with the situation.

These therapies can be helpful if you feel that you are struggling to accept or adjust to the new reality imposed by your partner’s cancer. You may need to look into several therapies before finding the right ‘fit’ for you.

For example, acceptance and commitment therapy is designed to help people to cope
with overwhelming feelings when faced with difficult situations that cannot be controlled. Rather than trying to change distressing thoughts, it encourages mindfulness, acceptance and living according to your values.

Some psychologists and counsellors are more generalist in their training and don't subscribe to just one type of therapy. The most important factor is to find someone you feel you can trust and speak openly with.

Your GP or your partner’s cancer treatment centre can be useful starting points for a referral to the right counsellor or psychologist.

Having a strong support system has many positive benefits, such as having better coping skills and staying healthy. It is also known to help decrease depression and anxiety, and can often reduce stress.

Support through Ovarian Cancer Australia

Ovarian Cancer Australia provides a series of supports. You may wish to first connect by calling our Helpline on 1300 660 334, or email support@ovariancancer.net.au

Ovarian Cancer Australia also runs the Male Partners Program

Your GP

Your GP is a great resource. You may have a long-term relationship with your GP that means their reassurance and input are extremely important to you.

It is a great idea to check in regularly with your GP, who can:

• manage any health issues you are experiencing

• advise on wellbeing and how you can manage your own health, including anxiety and depression

• advise on screening for health conditions, including cancer.

Other support services and resources

• Australian Psychological Society 1800 333 497 or https://psychology.org.au

• ASSERT NSW can provide details of sex therapists in all states www.assertnsw.org.au

• Beyond Blue 1300 22 4636 or www.beyondblue.org.au

• Carers Australia 1800 422 737 or www.carersaustralia.com.au

• Lifeline 13 11 14 or www.lifeline.org.au

• MensLine 1300 79 99 78 or https://relationships.org.au

• Relationships Australia can also provide sexual counselling. It may help to know many sex therapists provide services via phone or Skype https://relationships.org.au

• Society of Australian Sexologists https://societyaustraliansexologists.org.au

ADVANCE CARE PLANNING

• Advance Care Planning Australia www.advancecareplanning.org.au

CARERS

• Cancer Council – Caring for someone with cancer www.cancervic.org.au/get-support/ caring-for-someone-with-cancer/overview

• Carers Australia www.carersaustralia.com.au or 1800 422 737

FEAR OF RECURRENCE

• Ovarian Cancer Australia – Fear of cancer recurrence www.ovariancancer.net.au/store/ products/13/fear-of-recurrence-booklet

• Ovarian Cancer Australia – speak with one of our ovarian cancer nurses on 1300 660 334, Monday to Friday, 9 am to 5 pm

OVARIAN CANCER AUSTRALIA

• Ovarian Cancer Australia’s Helpline is available to all people impacted by ovarian cancer, including male partners. You can speak with an ovarian cancer nurse about available support options. Call 1300 660 334 weekdays, 9 am to 5 pm

• Ovarian Cancer Australia – the Resilience Kit will answer many of your and your partner’s questions www.ovariancancer.net.au/page/93/resilience-kit

RELAXATION, EXERCISE AND DIET

• Cancer Council Australia – Podcast: Finding calm during cancer, search at www.cancercouncil.com.au

• Better Health Channel – Men’s nutrition needs www.betterhealth.vic.gov.au/health/healthyliving/Mens-nutrition-needs

• Beyond Blue –The facts about drugs, alcohol, and mental health issues www.beyondblue.org.au/the-facts/drugs-alcohol-and-mental-health

• Ex-Med Cancer www.exmedcancer.org.au

• Headspace – meditation for anger, 10-day plan www.headspace.com/meditation/anger (while this meditation is not specific to people with cancer or their partners, it may help overall with anger management)

• World Health Organization – Healthy diet, www.who.int/news-room/fact-sheets/detail/healthy-diet

SEXUALITY AND INTIMACY

• ASSERT NSW – can provide details of sex therapists in all states www.assertnsw.org.au

• Ovarian Cancer Australia – Sexuality, body image and relationships after ovarian cancer. Discusses sexuality, intimacy and sex and provides a deep insight into the effect of ovarian cancer and its treatment on your partner, search at www.ovariancancer.net.au

• Relationships Australia can also provide sexual counselling. It may help to know many sex therapists provide services via phone or Skype https://relationships.org.au

• Society of Australian Sexologists https://societyaustraliansexologists.org.au

SUPPORT, INCLUDING CRISIS SUPPORT

• Australian Psychological Society 1800 333 497 or https://psychology.org.au

• Beyond Blue www.beyondblue.org.au or 1300 22 4636

• DirectLine alcohol and drug counselling 1800 888 236

• Find a counsellor via www.theaca.net.au/find-registered-counsellor.php or a social worker at the hospital where your partner is having treatment

• Lifeline 13 11 14 or www.lifeline.org.au

• MensLine 1300 79 99 78 or relationships.org.au

• Ovarian Cancer Australia Helpline 1300 660 334 or email support@ovariancancer.net.au

• Ovarian Cancer Australia – Male Partners Program www.ovariancancer.net.au/page/219/male-partners-program

WHEN CANCER WON’T GO AWAY

• Cancer Council – Podcast: Caring for someone in their last months www.cancercouncil.com.au/advanced-cancer-podcasts

• Ovarian Cancer Australia – read our Resilience Kit, section titled ‘If your cancer won’t go away’ for information about palliative and end-of-life care and where to get support www.ovariancancer.net.au/page/93/resilience-kit

WORK, STUDY AND MONEY

• Cancer Council – Cancer and your finances www.cancercouncil.com.au/wp-content/ uploads/2021/11/Cancer-and-Your-Finances-2021.pdf

• Cancer Council – Superannuation and cancer www.cancer.org.au/assets/pdf/superannuation-and-cancer

• Cancer Council’s Legal, Financial Planning, Small Business and Workplace Referral Services may be able to help with financial, legal or workplace advice, call 13 11 20

• Ovarian Cancer Australia’s psychosocial team can support and refer you to specialist financial help and support. Call 1300 660 334 or email support@ovariancancer.net.au or visit www.ovariancancer.net.au

We extend our heartfelt thanks to everyone who has been involved in developing this important resource.

We are especially grateful to the men and their partners who participated and provided their honest and moving words throughout the booklet. We would also like to thank the following consumers and health professionals for their enthusiastic involvement in the review of this resource and for sharing their expertise and sincere and important stories.

• Peter Burns – Partner with lived experience

• Tim Ford – Partner with lived experience

• Imran Hashmi – Partner with lived experience

• Larry Robb – Partner with lived experience

• Sue Robb – Woman with lived experience

• Peter Williams – Oncology Nurse and Male Partners Support Group facilitator

• Angela Jones – Oncology and Palliative Care Social Worker and Bereavement Counsellor

• Dr Oliver Holmes – Psychologist, Peter MacCallum Cancer Centre

• Dr Peter Martin – Educator and Palliative Care Physician, Deakin University

• Georgie McKenzie – Support Nurse and Resource Lead, Ovarian Cancer Australia

• Bridget Bradhurst – Support Nurse, Ovarian Cancer Australia

• Hayley Russell – Senior Research Manager, Ovarian Cancer Australia

• Veronica Perera – Communications Specialist

  Writer: Annie Angle, Specialist Oncology / Palliative Care Nurse / Health Writer Editor: Rosemary Moore
  Photography: Eric, Tom and Bruce | Charlie Kinross Photography | Cat Black Photo