Information for partners

Many couples say that they find not knowing what will come next particularly unsettling. Are new symptoms a sign of something or not? Is the treatment working? This uncertainty makes some women feel anxious about any physical changes, and like they constantly have to be on the lookout for any signs of the disease progressing.

One way for your partner to deal with this situation is to become active and to do as much as possible to contribute to the treatment and her own wellbeing. Here are some ways in which you might be able to encourage your partner to do that and – if she agrees – support her:

• Discuss her current state of health and treatment options with her so that both of you can assess them better.
• Go with her to the doctor and make sure that all of your questions are answered. Together, the two of you will have a better chance of understanding and remembering everything the doctor says.
• Both of you could focus on trying to live life to the fullest, getting exercise if possible and eating what you like.

When deciding whether to have a particular treatment or not, it may also help to discuss the advantages and disadvantages of different options together. You can offer support while your partner is making the decision, but what she eventually decides is solely up to her.

It is not uncommon for women to distance themselves from friends and family for a while if the cancer progresses, perhaps due to physical limitations, exhaustion or because they are feeling down. Sometimes it might be because they don't (yet) want people to know about the disease or are afraid of inappropriate reactions. Then it might help her if you keep in touch with her friends. If you talk it over beforehand, you can be sure you're acting in her interests so she doesn't feel like you're making decisions without her.

Your partner may need some time away from you too, and you might feel like you can no longer reach her. It could be easier for her to open up again if you accept the situation, have patience, and let her know you're always there for her.

Despite everything, much of the time both of you will also be dealing with your everyday lives, as well as pleasant activities. Many couples say that they do not feel like, or simply cannot, spend all of their time worrying. Instead, they simply try to enjoy and make good use of the time they spend together.

Living with cancer and having treatment may make your partner feel frightened, depressed, angry or sad over and over again. She might want to change some things in her life and set different priorities, or instead simply live as normal a day-to-day life as possible. It is also common for needs to change in different phases – people have to find their own way of dealing with a life-threatening disease.

As her partner, you can be there for her along the way – even though you perhaps would have chosen different coping strategies, or if her decisions threaten habits that are dear to you. It may be important to your partner that you accept her decisions and the situation as it is. Talking with her about the things that are truly meaningful and central in your lives can be valuable for you, too.

It is important to keep the lines of communication open so that you understand each other's wishes and needs. This may sound trivial, but it's not always easy to do. People who are seriously ill often want to talk about the disease and the related problems, fears and worries. Every couple finds their own way to talk about things. Some address them every day, while others prefer to only bring the disease up every now and then.

Taking the time and showing a willingness to listen can really help, especially during difficult phases. This is also true if you feel that you're not able to offer concrete help and can “only” rehash what you already know, or if you're afraid of saying the wrong thing. Sometimes it's good to express your own insecurity, too. Simply spending time with each other without speaking much can also be comforting.

While providing all this support, it's important not to forget your own everyday and emotional needs. This can lead to conflict – especially if there was already tension in your relationship before. You might have different opinions about which treatment approach is best, or different priorities in everyday life. If you argue a lot or feel like you're drifting apart, counseling or professional psychological help may be a good idea.

You might not only have intense feelings of fear and grief, but also feel angry – that cancer has so suddenly disrupted your life together and that you might be left alone in the foreseeable future. You might also start to feel helpless: You may want to carry the burden of suffering and sorrow for your partner, but not know how. It is hard to see someone you love suffer. Some also say that they feel guilty that their partner is so ill and they are not.

All of this can be very hard to deal with. But many people don't want to trouble their partner with the additional burden of their own fears and worries, so they end up keeping it all bottled up. This might be the right thing to do for a while in some situations – but it probably won't be good for you over the long term. If you manage to talk with your partner about how both of you are feeling at the moment, it will probably work out better in the long run. Bear in mind that your partner, despite her own illness, will probably also be worried about you, and that leaving things unsaid can be a great burden for both of you.

It sometimes also helps to talk openly with a friend or relative. Psychosocial help is another option. Specially trained “psycho-oncologists” are familiar with the stress associated with cancer and can help loved ones to cope with it. It is not a sign of weakness to accept this kind of support. Most people in this situation get to a point where they need help. Cancer information centers and clinics usually provide advice free of charge. In Germany, statutory health insurance funds sometimes cover the costs of psychotherapy for partners and relatives in psycho-oncologists' practices.

There are also support groups for partners of women with (breast) cancer. They offer you the opportunity to talk with other people whose lives have been affected by the disease and who can understand your thoughts and feelings because they are going through the same thing. In Germany, the Cancer Information Service, (in German: Krebsinformationsdienst), can provide the addresses of support groups in your area.

You might also draw strength from looking at how you coped with difficult situations in the past. How did you previously deal with major crises as a couple or family? For instance, did you have rituals like speaking about the day's events and worries during an evening walk? Can you still sometimes see the funny side of things despite the seriousness of the situation? Anything that helped you out in past difficult situations might help you now too.

It is important that you regularly take time off to relax, meet friends, or pursue a hobby. Nobody is expected to think about cancer and all of its consequences all day long. If you have children, it's important to regularly spend quality time and, if possible, carefree time with them too.

As a result of the disease and the related treatment, many women lose sexual desire, at least for some time. Sexual needs often have a lower priority due to a number of different factors, including pain and physical limitations, tiredness and exhaustion, changes in how your body feels to you, and emotional stress. During this time, it's not uncommon for men to be afraid that their own sexual needs will put too much additional pressure on their partner.

What’s more, the cancer and treatment affect key aspects of a woman's femininity: Surgery may cause scarring or result in the loss of one or both breasts. Hormone therapy or chemotherapy may lead to infertility or menopause-like hormonal changes before menopause. Many women struggle with this and ask themselves whether they are still desirable or attractive.

You might also lose sexual desire yourself for a while – perhaps because the illness, the changes in your life, and the worries about your partner are affecting you so much. It may then be important to tell her how you feel and to explain that it isn’t because of her, but because of the circumstances.

It doesn't necessarily have to be a problem if sexuality ends up not playing a major role in your relationship for some time. As long as you feel close as a couple and accept that the breast cancer has changed this aspect of your relationship, too, there is no reason to worry. Physical contact and tenderness do remain important and pleasant for most women, though. Over time, many couples manage to accept the changes brought about by the cancer and can rekindle their passion. One way to maintain a sexual relationship is to stroke and massage each other and be tender, even if sexual intercourse isn't possible or wanted.

Many couples already found it difficult to talk with each other about their sex life before the cancer entered their lives. If you're having difficulties too and you feel that the lack of sexuality is harming your relationship, it might help you to talk openly with each other about your needs, fears and feelings and to take your time. If the two of you can’t find a solution on your own, you can see a doctor or (specialized cancer) therapist. Talking with others in a support group is also an option.

Most women with cancer find it very important to stay independent and active, and to keep up a normal everyday life, for as long as possible. You don't need to start doing chores for her if she can and wants to do them herself.

Over time, though, the physical limitations caused by the cancer and the treatment will often make everyday tasks more difficult. This means you may have to start doing more of the work that your partner used to do, such as household chores, shopping or looking after the children. She might have several stays in the hospital or a rehabilitation clinic for a few weeks at a time. So you may gradually take on more responsibility in the relationship and the family as the cancer progresses. Switching roles like this is never easy – especially when it comes with the burden of coping with cancer.

Other new responsibilities might also lie ahead: A lot of extra organization needs to be taken care of because of the cancer. Your financial situation also needs to be seen to: If your partner works, you will need to think about whether she can continue working and, if not, what the financial consequences will be. You may have to find out about nursing care at home. Many people find it a real challenge to juggle the increasing number of household tasks and home care as well as trying to keep up the life they have led so far – particularly if they are still working.

Things will probably soon become overwhelming if you try to master all of these challenges on your own. It is important to look out for yourself and be realistic about what you can do and when you have reached your limits. If you look for help and support early enough, you will be able to be there for your partner when she needs you.

Many kinds of practical support are available. In Germany, statutory health insurers pay for home help under certain conditions. You can find out about the services you are entitled to by contacting a nursing care support center (in German: Pflegestützpunkt), your health insurer or your long-term care insurance fund. Personal advice for relatives is also offered by cancer information centers (Krebsberatungsstellen) run by various organizations and the independent patient advice service in Germany (Unabhängige Patientenberatung Deutschland), which provides services in German, Turkish and Russian. The German Cancer Information Service (Krebsinformationsdienst) offers a German-language telephone helpline. Last but not least, it can be important to include family and friends and ask them for support to take some of the burden off you.

Talking with children about the illness can be particularly challenging, especially if they are not yet grown-up. Keeping the disease secret is not a solution – even young children can sense that “something is wrong.”

Most people associate the word "cancer" fairly strongly with dying and death. Whether your partner's cancer is stable or at an advanced stage, the two of you might have already thought about what will happen if she dies. Some people feel bad about already starting to think about the time after their partner has died, but it is a legitimate thing to do. And for many people it is important to prepare emotionally and mentally.

It is very difficult to talk about death. You might have to make several attempts before both of you are ready for a conversation about it. But being able to articulate and share your deepest fears can make it less terrifying. Sharing feelings of sadness and helplessness can also bring a couple closer together. Some women say that they wish they could talk about “dying and death” more openly with their loved ones.

If it's likely that your partner only has limited time left, you will probably have to make a few decisions and talk about formalities. These may include financial aspects, a last will and arrangements for caring for the children, as well as the medical and nursing care needed for your partner in her last phase of life. It is also important to find out about palliative care at home or in the hospital or hospice.

Quite a lot of couples say that the disease has brought them closer together, and that they have learned to appreciate each other more. They also often say that they feel they have learned to focus on the important things in life, and not waste time fussing over the small things. Despite all the worries and difficult times, perhaps you too can see your life together in this way and make the most of every day.