Diane Davies author of Jeannie Ann’s Grandma Has Breast Cancer
“You have breast cancer.” Hearing my doctor say those four words in connection with my body was devastating to say the least. Let’s try overwhelming, shocking, shattering, damaging, or even ravaging. None of those words come close to describing how I felt when I received that diagnosis. With my husband and adult daughter by my side, the consultation continued. I never heard a word of what was said as I was planning my funeral!
Here I am, however, fifteen years a survivor and breast cancer patient advocate trying to make the journey less lonely and less scary for those that come after me. My intent in writing Jeannie Ann’s story was to create a tool for families facing a breast cancer journey to use when they needed to start the conversation where children would be told about the loved one’s diagnosis. Reading Jeannie Ann’s story will serve as a stepping stone to creating an atmosphere where truth will be told and questions answered.
“Wait! I don’t want my children to know that I have cancer. I want to protect them from the harsh realities of life. I don’t want anybody to know. I want to keep this diagnosis a secret. I especially don’t want to feel or appear weak, or scared and I certainly don’t want to cry and really scare my kids.”
I get it. I do understand. I’ve been there. My husband’s first wife lost her life in an accident. When we married and had our daughter we never even thought to tell her about this tragedy as she grew older. Great Grandma passed away and the minister leading her funeral was a member of the family. He was talking about this wonderful 101 year old little woman and all of the changes she had witnessed in her century of living. He mentioned the accident among other family trials and incidents that Great Grandma lived through. My twelve year old daughter was distraught and shattered. She explained to us that she felt abandoned by her family and alone. We had lied to her by never telling her. My husband along with his mother and I spent many hours helping her understand the terrible oversight. Children need to know they belong and that they are important enough to know the whole story, good and bad, that we share together as a family. We learned that one the hard way.
So let’s focus on this “WHY” it is important that children know about a loved one’s diagnosis. First of all children are very perceptive. They thrive on routine because it makes them feel safe knowing what is coming. Any break in routine no matter how small is upsetting for them. In Jeannie Ann’s story, the break in routine comes when she gets home from school, a longer tighter hug from mom, no snack and baby brother still in his pajamas from the night before, is her tip off that something is not right. Dinner is a quiet affair – another hint. Anything out of the ordinary takes the safe out of the routine.
As hard as the truth may be, children imagine it worse. Jeannie Ann overhears Mom and Dad whispering after she leaves the table. She hangs around the doorway and hears the word C A N C E R! Now her imagination goes wild. Who has cancer? Is it me? My baby brother? Mom or Dad? What will happen to me? Who will take care of me? With the lack of information, children fill in the blanks themselves often in scary, unhealthy ways totally missing what is really happening.
Keeping cancer a secret can make the child feel shut out and abandoned as we learned with our daughter. Jeannie Ann even imagined that she was the cause of the cancer and the pain because of something she’d forgotten to do or perhaps because of bad behavior that she did do. The illness came as a punishment. This kind of thinking is not unusual and becomes another stress in the dynamic of the family causing a closing of the lines of communication. When trying to keep a secret, the child may hear about the diagnosis from a well-meaning neighbor or even other kids on the bus destroying the trust that the child has in the parent. This can lead to the child thinking that her/his family doesn’t even love them enough to let her/him in on the secret.
As hard as we as parents try, it is impossible to shield our children from the stressful parts of life. If we were successful, I’m not sure that would be a good thing anyway. Our job as parents is to teach children how to manage such challenges in life by modeling for them what works for us.
Being honest and truthful with children is important during the good times as well as the bad. When a child thinks the parent is not being truthful, it becomes difficult for them to know when they are being told the truth. The effects of treatment, loss of hair, exhaustion, nausea, sleeping all the time, can be terrifying for children without knowing the facts behind what is happening. Talking about feelings make feelings less overwhelming, upsetting and scary even for adults.
Your child depends on you. A cancer journey can be a loving growing opportunity for the family. It takes work and planning at a most difficult time, however. By letting our children in, we as parents are allowing them to learn how to care and provide support and comfort for others and for ourselves. This is an important life lesson.
Here is something to think
about. KidsGrief.ca talks about the Four
Child Concern When Someone They Love is Diagnosed With Cancer.
Keep these four questions in mind as you plan the conversation with your children regarding the diagnosis of a loved one with cancer.
Choose a time when you can focus all of your attention on the conversation. Make it a quiet time with as few distractions as possible. Turn off all radios, TVs, cell phones, and other devices to make for less interruptions. Plan for the time to be a long enough so all questions can be answered. The best place to hold this conversation is at home where all involved are comfortable and feel safe. If at all possible, the loved one with the diagnosis should be the leader with all members of the immediate family in attendance even the very young. Add others only if they increase the child’s comfort. People outside the family could possibly add more stress for everyone. I’d be real deliberate about who should be there and why.
If you are the patient, practice saying out loud “I have cancer.” That is a tough one. For me once I gave voice to it, it became reality. I highly suggest practicing it so you are able to control your own response. It’s okay to cry. You should be honest with those you love and crying is an honest response. Remember there is no age limit for the need to cry. Allowing emotions to be expressed honestly help the children to feel safe and secure.
Be prepared with all of the facts as you never know what questions will be asked. It is important to share what part of the body is affected and simple details regarding the treatment plan. Listen carefully to what the child is asking. There is no need to talk beyond what is being asked or to go into details that may just add to the fear. Being honest and hopeful is the best approach. If a question is asked that you do not know the answer to, assure them that you’ll find the answer and share it at that time.
“Will you die?” is sure to be one of the anxieties on everyone’s mind so spend some time thinking about how you will answer that one. Dying is always a possibility so be careful not to make a promise that is actually beyond your control.
Be sure the children understand that they are not responsible in any way for Mom having breast cancer. They did not cause the cancer by their actions or inactions. And just as important, they cannot “catch” cancer – it is not contagious.
“Who will take care of me?” is certainly a topic not to skip over with children. Where will I be while you are sick or in the hospital? Where will I eat? Where will I sleep? If possible, allow the children to have a voice in this plan. Be sure to reassure that no matter what happens, the child will be cared for and that you will try to keep their life as normal as possible under the new circumstances. At the same time, modal for them that it is okay to laugh and be happy during this time of illness.
Children can share in the experience with you by assigning them tasks to help with according to their age level. Teens of course can take on more responsibility but still need to have their own time and space if possible.
Here is a reminder list for parents for after the conversation and as the journey continues:
Listening to your child is the most important advice when a loved one is diagnosed with any cancer. Listening is a vast part of communication and good communication helps everyone in the family cope with the changes that lie ahead. Talking with your children honestly and helping them express their emotions will help them feel safe and secure and continue to build trust in you as the parent. Honest communication with your children throughout the cancer journey is of utmost importance. Don’t go it alone – reach out! There is plenty of help for those of you who are strong enough to ask for it.