Living with metastatic breast cancer

You might experience a range of different emotions that can hit you suddenly, including grief, fear, disappointment about health setbacks, as well as anger about how unfair your situation is or envy of people who are healthy. That's absolutely normal and nothing to feel guilty about. In the long run, though, you will feel better if you learn how to prevent negative feelings and thoughts from dominating your life.

Many women say that it comes as a relief to admit that they're feeling scared, anxious or desperate, and to talk things over with people close to them. As well as talking with your partner, family and friends, it can also be helpful to have psychosocial counseling or special "psycho-oncological" counseling for people with cancer. Emotional and spiritual support may be provided by your community, place of worship or hospital too. You can also talk with others affected by the disease in a support group – for women with advanced breast cancer, if possible. They're likely to understand what you're going through.

When dealing with your fears, it can help to find out exactly what it is about a specific situation that you're afraid of: Is it pain or other symptoms of the disease? Is it a treatment you're about to start or not knowing what will happen? Once you've named your fear, you can get to the root of it and seek the information and support you need.

There's no reason to feel bad if you find it hard to face your anxieties and worries. One way of coping with the cancer is to concentrate on other things and take your mind off it for a while. If you're afraid to go in for treatments or doctor’s appointments, you can ask someone close to you to come with you. Relaxation techniques, exercise or enjoyable activities that take your mind off things can help to reduce anxiety.

Dealing with fear and grief involves both gradually accepting the things you can't change and finding a way to live with the situation. There is no “right way” to do this. Everyone who has a life-threatening disease copes with it in a different way. The way you handle it might change from one day to the next, depending on how you're feeling, your current needs and the challenges you're facing.

Women often say that dealing with the disease has helped them a lot and changed them as a person. After an initial period of feeling down, they slowly find new orientation, re-evaluate things, and often find themselves enriched through greater maturity and awareness. That can mean living in the moment, enjoying every single day and striving to get the most out of it. They often make more time for their friends and family, or for their hobbies and to relax.

Some women make major changes in their lives and pursue new interests. Many set themselves goals that they would like to reach. Others find comfort in continuing to live their lives as normal as possible and trying to make the best of each day. It can help to keep up typical routines, like household chores, caring for children or doing regular volunteer work.

If you have the feeling that fears and depressive moods are taking over, and you feel powerless and don't know what to do about it, getting specialist psychological support can be invaluable. It can also help you get a better understanding of your situation, or if you don't know how to talk about it with friends and relatives.

The services offered include special 'psycho-oncological' support for people with cancer, as well as psychosocial counseling and different types of psychotherapy – some of them body-oriented. You can have therapy or counseling either individually, together with your partner, or in a group with others who have breast cancer.

Psychological support includes learning about strategies you can use yourself to improve your wellbeing. For instance, you can learn relaxation techniques like progressive muscle relaxation, autogenic training or exercises to focus your perception. These techniques are a way to reduce stress, deal with your fears and better cope with pain.

You probably know from experience that certain situations and circumstances can increase or reduce the amount of pain you feel. Pain management therapy includes things like finding out what influences your pain perception and what changes you can make in everyday life.

Rehabilitation hospitals often offer relaxation classes and pain management therapy. Some practice-based doctors and psychotherapists with additional training in pain therapy offer courses, too. In Germany, statutory health insurance funds will cover the costs if you have a prescription from your doctor.

It is especially important for women with metastatic breast cancer to take good care of themselves. Here are some ways for women to actively support their treatment and to do themselves some good:

• Get regular exercise, if possible
• Eat what you feel like eating
• Find the right balance of activity and rest
• Get as much restful sleep as you can
• Generally do things that make you feel good during this difficult time

Some women find that paying close attention to good body care makes it easier to deal with changes caused by the disease and the associated treatments. Special care products can be used on skin after radiotherapy and on scar tissue. Aside from that, gently applying lotion and massaging the area is an easy way to take care of yourself.

You might have noticed friends or family feeling helpless or nervous as a reaction to you having cancer. Or they might seem to avoid the subject or try to downplay the seriousness of it all. You may not want everybody to know about the cancer because you're worried about getting these kinds of reactions. At first you might also want to protect your loved ones from such troubling news. Or you could think that healthy people won’t understand what you're going through anyway. All of these might also be reasons not to share your thoughts and feelings with people who know about your disease, either.

But if you talk to your partner, relatives or friends about your disease, it will be easier for them to understand you. Talking with your treatment team and/or in a support group can be a great relief too. Having close people around you to cry and share your fears with, but also to experience everyday things with, and laugh and enjoy life with, can really make it easier to live with the disease.

On the other hand, some women don't want to talk about their disease and prefer to cope with these things by themselves. And that's also fine. The main thing is that you find out for yourself how to best cope with the disease – and know who you can turn to if you need someone to talk to.

Women with metastatic breast cancer often think about their family's future and whether their relationship will survive the strain.

How much couples talk about the cancer and the treatment varies widely. Some couples talk about it every day, for instance about the woman's physical wellbeing. Others draw a line and have fixed times when they talk about different things, like after a doctor's appointment. Many talk with each other when the woman has new or unusual symptoms. Some say that they talk about it less once a treatment has been decided on.

Your partner is in a difficult position. Seeing a loved one suffer and the fear of losing her is hard to bear. On the one hand, many people want to stand by their partner, help with everyday tasks and household chores, and give emotional support. And on the other hand, they sometimes need support themselves to be able to cope with the changes in their life. Some roles in the relationship will probably shift over time. Because of the disease, you may have to give up some responsibility and depend more on your partner's support than you used to. This may give rise to conflicts. Last but not least, the disease can affect your sex life.

So it's all the more important to stay connected with each other and talk about your hopes, fears, needs and wishes. Changes in day-to-day life will make new arrangements necessary, and finances and the household will have to be organized. Many couples still try to continue living a normal everyday life, and to have as many good days with each other as possible without constantly worrying about the future. There's no right or wrong approach here, only your own individual path.

Many women aren't only concerned with trying to arrange their life with their partner, but also with topics like grief, saying goodbye, and dying. It is often difficult to talk about these things. If it all gets too much, you can seek special "psycho-oncological" or psychological support, either individually or as a couple.

In Germany, statutory health insurance funds sometimes cover the costs of specialist psychological counseling for family members too. There are also support groups especially for family and friends.

As a mother or grandmother, you want to see your children and grandchildren grow up and guide them through life by giving them advice and helping them. Because of the disease, this is now only possible to a limited degree. Knowing this can cause great sorrow. Some women are also worried about the influence the cancer might have on their children. No matter whether the children are still young or already grown-up – it's often difficult for mothers and grandmothers to talk with them about the disease. But many women say that it was very important for them to talk with the children about the diagnosis and what it means.

Even young children can sense when something isn't right, and will notice even small changes in your family life. So it's a good idea to be open with them. What exactly you can talk about will depend on the child's age and maturity. But explaining that you're seriously ill may make it easier for them to understand why you're no longer able to do certain activities with them and why you need more rest. You might also have to expect some consideration from your children and set boundaries for them. But there's no reason to feel guilty about this.

On the other hand, children need a lot of attention in this kind of situation. They also need day-to-day life to be as structured as possible, as well as a lot of loving care. It is important for them to be able to share their fears and grief too. Children often worry that they're to blame for the cancer. It is then important to keep reassuring them that that's simply not true. Here, too, do not hesitate to get professional counseling and support if you're finding it too hard to talk with your children, or if you think that they need additional help. Friends and family can also be of great help sometimes. In Germany, mother-child convalescent care (Mutter-Kind-Kur) may be an option.

Support groups – preferably for women with advanced breast cancer – offer the opportunity to meet other women who have had similar experiences and know the feelings and practical problems associated with the disease. There you can open up about topics that are often difficult to talk about with people who don’t have cancer. This can be a great help.

Some women are afraid that what they talk about in a support group might get them down. This fear is usually unfounded. On the contrary: Many women say that they feel energized by the group, that they really benefit from positive role models and the mutual support – and that the meetings also allow room for joy and laughter. Most people in support groups want to give others strength and hope.

Exchanging tips and experiences with other people who are facing the same disease is the underlying principle of support groups. Self-help organizations offer many other things too. These include

• special sports activities for cancer follow-up care,
• events and brochures on various topics,
• help with socio-legal issues and
• representation in social and healthcare politics.

Ideally, support groups should only represent their members' interests – in other words, be independent of the pharmaceutical industry.