Family and friends

Going for a walk with me, taking me out of the house, just distracting me from my problems were good – and talking about things not cancer-related.

Being diagnosed with ovarian cancer is a difficult time for women and for their families and friends. Ovarian cancer is too big for one or two people to face. The best way for people to cope is within a support network.

A crucial part of most women’s support networks is the love and care provided by family and friends. But sometimes family and friends don’t realise just how important their love and support is for a woman who has been diagnosed with ovarian cancer. You may find yourself worried that there is nothing you can do to help and afraid you might say or do something that will upset her.

You cannot change the situation, but you can be sure that if you were important to this woman before she was diagnosed, you will be important to her now. This booklet will help you support your loved one with ovarian cancer and her family. It also includes information specifically for partners, and the importance of caring for yourself during this challenging time.

A lot of my friends just didn’t know what to say and didn’t keep in touch in the hard times. This was an added stress for me.” – Sandra “The support I received made me realise how lucky I was to have such a beautiful family and friends who made me feel so much stronger.

Most women with ovarian cancer will agree that family and friends are invaluable during diagnosis, treatment and beyond. One of the best things you can do is remind her how much she means to you.

This could be through things you say or do. Women who have had ovarian cancer have these suggestions for practical and emotional support that family and friends can offer:

• Home-cooked meals – make a list of different meals you could cook and ask your friend which she might enjoy. Be aware that some people’s food preferences may change during treatment.

• Keep in touch – this could be through phone calls, emails or visiting. It’s good to call and check how your family member or friend is feeling before you visit her.

• Accompany her to treatment – offer to go to chemotherapy with her or make up “chemo packs” filled with fun things to do and read.

• Go on outings – offer to take her for short trips to a non-crowded place – like a walk on the beach or in the park, or go to a quiet café.

• Offer to help in practical, specific ways – you could clean the bathroom, change bed sheets, water the plants, or clean the bird cage.

• Invite her to events that you have previously enjoyed together, but with the caveat “It’s fine if you don’t feel up to it on the day” so she doesn’t feel pressured to attend.

It was best when people offered help and support that acknowledged my actual needs rather than assumed needs.

• Maintain contact, especially when she is in hospital or when she’s feeling unwell. SMS or email is a great way to keep in touch and to let her know you are thinking of her. Calling can be good too, but keep it short, or leave a message.

• Send an alternative to flowers (especially if a lot of flowers have already been sent). Send balloons or a book instead.

• Before visiting your family member or friend in hospital, ask her or someone who has visited her recently if she needs anything from home.

• Set aside some time to spend with her in hospital to help with practical things, like answering her phone, or getting a nurse. If she is comfortable resting when you are there you might like to bring a book to read.

• Take her some DVDs, CDs, books or magazines to keep her entertained when she is stuck at home feeling unwell.

• Keep track of her chemo schedule and send messages and emails or call to say good luck with each session.

• Ask specific things like “So you haven’t had any temperatures this week?” or “How are the pains going?”

• Offer to host a chemo finishing party on her final day with cake, champagne and presents.

A lovely friend brought up pedicure gear and gave me a foot massage and painted my toenails when I was having chemo. I was so touched by this simple act of kindness and closeness.

• Remember that she is still the same person. Talk about things you would normally talk about and share experiences that you would normally share.

• Offer to pass on how she is to others so she doesn’t need to worry about making contact with everyone.

• Acknowledge her wig is not as good as her real hair, but tell her it still looks good.

I loved it when friends left cheery messages on my answering machine

• Respect her decisions around treatment – every woman will make individual choices based on her own needs.

• Sit with her when she needs to cry.

• If you want to find out more about ovarian cancer, ask her if she can recommend a book or resource.

We lose a lot of our power and control during cancer treatment and when we know we can do things just let us be useful and contribute when we feel we can manage

• Make shared plans for the future, even if these plans might change. It can give her hope and something to look forward to.

Here are some suggestions from women with ovarian cancer about what not to do. Don’t:

• Avoid her because you don’t know what to say.

• Worry or feel embarrassed if either of you get upset.

• Assume she is feeling good because she looks well.

• Tell her not to worry or that things will be fine.

• Pretend it isn’t happening and not acknowledge her situation – like not mentioning chemo, cancer or hospital.

• Assume it is all over the minute chemo is finished – or say that the cancer won’t come back.

• Say it’s not as bad as it could be.

• Tell cancer or surgical horror stories.

• Say there must be a reason for her cancer or that it “was meant to be”.

Avoid wearing perfume when visiting people who have just had chemo – it can make them sick!

It is not uncommon for women to have times when they don’t want to talk about their diagnosis, especially during the early stages of finding out. You may feel like she is brushing off your questions or putting up barriers about her needs.

There is nothing wrong with asking how someone is doing, it shows that you care

Your family member or friend may be in denial, she may be angry about her diagnosis, not ready to deal with it – or she might just not feel like talking about it at that time.

The most important thing is that you acknowledge she has ovarian cancer and let her know you care. If you avoid discussing her cancer, this can leave her thinking that you don’t care or you’re not willing to support her.

If your family member or friend doesn’t want to talk about her cancer on a particular occasion, don’t assume she will never want to discuss it or that she doesn’t need support. It may be best to talk about something else – but make sure you do come back to her situation at another time.

If you’re not sure what to say, take your cues from her. Some people are very private, while other women feel comfortable talking in detail. Respect her need to share or her need to remain more private.

Listen without always feeling that you have to respond. Sometimes, an empathetic listener is what a person needs most. Often, after a woman with ovarian cancer has talked through a concern or worry, she feels much better.

Because you look well, people do not realise the pain inside – both physical and emotional – and sometimes they do not realise that you still need their support and love and help.

The family members of a woman with ovarian cancer also need support. It can help your friend feel better when she knows that your careextends to her family.

I wanted to keep my children’s lives as normal as possible (everyone does) – people I didn’t know well turned out to be a great help by regularly taking them to sports matches.

If your friend has children, think about what you can do to keep her children’s lives on track. This could involve driving them to sporting or social occasions, helping them with their homework, or being available for a chat.

If her children are young, it could be good to speak to your friend about what her children know already and how much she wants them to know.

It can be helpful for children of all ages to speak with adults other than their parents about their mother’s situation. Children might worry that expressing their fears will upset their parents and they may feel more comfortable sharing their concerns and questions with you.

If your friend has a partner, think about what you can do to help them as well. Partners often take on many emotional and physical responsibilities without realising that there are other people around them who can help. You can ask partners if there are any jobs that will lighten their load – such as cleaning the house, doing a load of washing (and the ironing!), taking your friend to her appointments, or just being available so that they can chat about their feelings and what they are going through.

While all the caring and support is given to my wife, sometimes my feelings and emotions are forgotten, but I am hurting too.

Sometimes partners get so caught up in helping their loved one, they forget to find time for themselves.

By freeing up time for your friend’s partner, you can help them to care for their own well-being – to find time for themselves and do things they used to enjoy before their loved one was diagnosed.

There will be many changes in your relationship with your partner now that she has been diagnosed with ovarian cancer. Acknowledge these changes and recognise the steps you will need to take to live with these.

As well as the practical assistance, a partner will be of emotional support if you include them in your treatment. They feel needed; you feel supported. The weekly chemo trip has turned into quite a social occasion for us.

Despite the many necessary changes in your lives, do your best to keep your relationship as normal and balanced as possible. Think about things that don’t need to change and make time for them, such as activities you both enjoy and spending time with friends. Find ways to pursue your common interests and express your love.

Intimacy is important from your partner – unexpected hugs and kisses, or just a pat or a touch are always comforting, but especially at this time.

Expect your partner to have good days and bad days – both emotionally and physically. Don’t take the bad times personally. It is normal for a woman with ovarian cancer to experience a wide range of emotions. You may also feel many things including resentment, anger and confusion. It is important to know that this is a common experience for many partners.

It can be helpful to talk through your feelings with your loved one, a friend or someone else in your support network. Be mindful that sharing your feelings can prevent them from intensifying over time and make it easier for you to cope.

Talking, a hug and just sitting with me is what I need more than my water bottle refilled or the doona brought to me. I think partners feel so helpless that they get caught up in trying to fix everything when there is no fix and you just need them beside you.

You need to recognise that this is a difficult time for you too because you are also dealing with the diagnosis.

Open up to others – tell your own friends and family about your feelings and what you are going through. This will help you to deal with your emotions and encourage people to give you the support you need. It is good to accept support: try not to reject it or feel guilty because you do not have the disease yourself. When you are supported, you will feel stronger and be in a better position to support your loved one with ovarian cancer.

Looking after yourself involves maintaining your emotional and physical wellbeing. Make sure you:

• Get plenty of sleep. Eat a wide variety of fresh, healthy foods.

• Make time to be active.

• Take regular time out for yourself – gardening, going to the movies, spending time with friends.

• Be aware of signs of anxiety, depression and sleeping problems and ask for help when you need it. Seeing your family doctor or a counsellor or at a cancer treatment centre are good places to start.

Learning more about ovarian cancer will help you to understand some of the challenges and concerns your friend, family member or partner is living with. You can find more information about ovarian cancer at www.ovariancancer.net.au

Most support groups welcome everyone. Ovarian Cancer Australia has a range of support groups which can be a source of information, comfort and inspiration. Please contact us on 1300 660 334 for more information or visit our website www.ovariancancer.net.au

Ovarian Cancer Australia is the peak national body for ovarian cancer. It is a not-for-profit organisation founded in 2001 by people who had been affected by ovarian cancer, either themselves or through someone they loved.

Our vision is to save lives and ensure that no woman with ovarian cancer walks alone. We work to ensure that:

• Women with ovarian cancer have a strong voice.

• Every Australian knows the symptoms and risks of ovarian cancer.

• All women with ovarian cancer have access to best practice diagnosis, treatment, information and support.

• A vibrant and growing national ovarian cancer research effort in Australia informs practice and translates into improved quality of life and survival for women.

Our core values: We listen. We are inclusive. We are courageous. We act with integrity