The first days, weeks and months after you receive the news of your diagnosis will be challenging. You will likely experience intense emotions – fear, anger, confusion, sorrow, loss. These feelings may be deeper and more intense than those experienced if you had a previous diagnosis. You may feel that your body has betrayed you. You may think that you did or didn’t do something to develop cancer or prevent it from reoccurring. The truth is that nobody knows exactly what causes cancer. This diagnosis isn’t your fault.
Our society focuses on stories of those who have successfully “fought the battle” with breast cancer, rather than on those living with metastatic breast cancer. You may feel isolated and alone at a time you want company and support. You may be feeling and thinking many things all at once, and life may feel out of control. There is no “right” way to feel: your feelings are uniquely yours, shaped by your personality, your situation and the way you cope with life events. It is natural to want to turn to someone for help in dealing with your fears, anger and other difficult feelings. That support is different for every person, but everyone needs and deserves to be helped and supported.
A metastatic diagnosis comes with different worries at different times. Remember that no two people deal with their situations the same way – what works for another may not work for you. What is important is that you allow yourself to experience your feelings and know what support is available to you. You do not have to be “strong” or “brave” all the time. You do not have to handle this journey alone.
It can be difficult to ask for help, especially if you have tended to be the caregiver and not the person who needs help. Find people who are able to be there for you when you need them. It could be family members or close friends. Perhaps you have coworkers or casual acquaintances that can help, listen and support you. You might find it helpful to share your feelings with others living with metastatic breast cancer. Take advantage of one-on-one or group support that is available online and over the telephone, or attend a support group. You may seek professional counseling or find comfort in religious faith and spirituality. Perhaps you will use several of these ways to share your story and receive support.
“Some friends and colleagues felt uncomfortable dealing with my diagnosis, especially when I had no hair. Many of them withdrew from me. I didn’t run after them or their friendship. I mourn the loss of some of these people from my life, but I realize that if they could not stand by me, then their friendships were not worth keeping.”
Talking about your diagnosis with others can be stressful. Finding the right time for you to tell others is important. It is okay to wait until you have dealt with your own feelings. You may want to share the news after you have talked to your health care team and done your own research. Telling one or two people at the beginning may be most appropriate or you may want to tell everyone. Do what is most comfortable for you – telling people is a very personal decision.
It is usually difficult to hide the fact that something significant is happening in your life; friends and family will eventually learn about your cancer diagnosis in some way. Decide in advance how much detail you want to share with them about your cancer and treatment plan. If they want to discuss your cancer in greater detail than you are comfortable with, let them know. Many will want to offer treatment advice, share stories of “cures” and stories of others’ journeys. If you find this upsetting, be politely assertive and let them know that a health care team is guiding you.
If you want to keep everyone updated, you might want to ask a family member or close friend if they can be your “spokesperson.” There are also online tools that can help you and your loved ones. MyLifeLine.org helps you set up your own (free) website as a way to keep everyone informed and removes the burden of retelling news.
Everybody is different so you cannot predict how someone will react to the news of your diagnosis. A common reaction is a desire to help and “be there for you”. My Cancer Circle is a simple online tool to help organize the community of people who want to help you so it does not become another task for you to manage.
You may be upset when friends, acquaintances and even close family members respond to your diagnosis by being scared or angry themselves. Sometimes friends and family members do not know what to say or do. They may be afraid of saying or doing the wrong thing, so they shy away. Some people may be very uncomfortable dealing with the reality of cancer. This is their issue, not yours. It is their fear showing through, not intent to hurt you. Try not to take it personally. Friends and family may need some time to process their feelings, just like you did when you learned about your diagnosis.
Understanding your Partner’s Response
Metastatic breast cancer can challenge relationships that previously felt comfortable and secure. It can also bring two people closer together than they have ever been or every expected to be. The stress experienced by couples may stem from many different sources: fear, anger and other emotions associated with the diagnosis, the upset of daily routines, increased isolation through a scaled-back social life, new financial pressures and changing roles within the relationship.
There may also be challenges as each of you learn to both give and receive support, express feelings and needs openly, ask difficult questions, discover how much or how little information a partner wants and make a multitude of tough decisions. How a couple goes about dealing with these issues varies widely from one relationship to another. Resolving them can be complicated.
If you have trouble working through relationship issues, involving a social worker or professional counsellor is often helpful. Some people find couples therapy to be helpful. As your health care team for guidance and recommendations.
“When I lost my hair, my ten-year-old said, ‘Mommy, your hair is not your heart.’ Her innocent words spoke volumes to me.”
A parent may find it especially difficult to talk to a young child about the diagnosis. It is natural to want to shelter a child from upsetting news. However, children may sense when something is wrong. They will usually imagine the worst if not told the truth. No matter how difficult, be assured that sharing the diagnosis with your children (and grandchildren) can reduce their feelings of fear, confusion and helplessness.
Others who have special relationships with your children can help you support them. Perhaps there is a close aunt or uncle, a close family friend, a special teacher or mentor, your religious or spiritual leader, or a close neighbour who can help your children deal with your news and ongoing challenges.
You are the best judge of what your children can understand and process. How they respond will depend on their ages and where they are in their development. Consider having a family counselor or social worker with you to help you share your diagnosis with your children. They are less emotionally involved and can provide your children with another focus for their anger, fear and confusion.
Remind your children that the doctors are helping you. Talk about your hope as meeting realistic short-term goals rather than the prospect of a cure. Young children may blame themselves for a parent’s illness, relating it to their own bad behaviour. It is important to emphasis to your children that the cancer is no one’s fault – not theirs, yours or the doctor’s. Let your children know that it is okay to be upset, angry or scared. Remind them often that they will always be taken care of and loved.
Teenagers too may find it hard to acknowledge or accept your illness. They should be made aware that there are other adults they can talk to if they find it too difficult to speak with you directly. It may be helpful to inform your child’s teachers and/or school principal that you have cancer, so that they can be aware of any changes in behaviour that your child is exhibiting.
Encourage an ongoing dialogue as you live with metastatic breast cancer. Each child will process the information differently and may have questions immediately upon learning your news or much later. By discussing questions as they arise, you can better understand your child’s concerns and how best to address them. It is important to acknowledge your children’s feelings and reassure them that they are not alone.
When talking to children
- Speak honestly, frankly and hopefully about your breast cancer and treatment. It’s best to use age-appropriate language.
- Use accurate terms, such as cancer and tumour, with children who are old enough to understand what those words mean in order to avoid confusion.
- Young children may blame themselves for a parent’s illness, relating it to their own bad behavior. Emphasize to your children that cancer is no one’s fault.
- Encourage an ongoing dialogue. Each child will process the information differently, and may have questions immediately upon learning your news or much later. By discussing questions as they arise, you can better understand your children’s concerns and how best to address them.
- Let your children know that it’s okay to be upset, angry or scared.
- Remind them often that they will always be cared for and loved.
Additional resources on talking to your children about cancer can be found here.