Since the time of my diagnosis of FBC (F-bomb breast cancer), we have talked openly with our five-year-old daughter about both the disease and its treatment.
While the personal nature of this circumstance made the conversations emotionally challenging, my professional experience as an adult and pediatric hospice nurse and social worker gave me both the tools and confidence to ensure that we gave her the developmentally appropriate answers.
Since our original conversation with her, we have encouraged her to ask questions. Over the course of my treatment, she has revisited a lot of her original questions as well as asked new ones. For example, the other day while driving her to camp, she asked, "Do you think that your cancer will come back?" GULP.
So, I thought I'd take this opportunity to share with you her questions and our answers. These questions tend to be typical of most children affected by a cancer diagnosis.
- The body is made up of cells. Cells make our bodies work. They are so tiny that you need a microscope to see them.
- Cancer cells don't look or act like normal cells. They don't allow our normal, healthy cells to work properly. They can grow very fast and spread. Cancer cells may group together to form a tumor.
- There are many different types of cancer. Cancer can grow anywhere in the body.
- There is an iPad application called 3D4medical that has an image of a breast cancer cell. It is an ominous-looking beast of a cell. This was really helpful for our daughter to envision what was in my body and to then understand the sense of urgency (and drastic measures!) to get it out.
- Cancer is not something that you can catch from someone else like you can a cold or the flu. You can be close to the person who has cancer and not worry about catching it.
- No. Nothing that anyone does, says or thinks can cause cancer in someone else. Ever.
- Though they will rarely ask the question out loud, YES, children wonder whether they caused cancer. It's sad, but true. If this question isn't addressed, children can carry this fear (that they had some hand in causing cancer) with them into adulthood.
- Most of the time, no one knows why someone gets cancer. It's hard to not have all of the answers, but the truth is we don't.
- There is still a lot we don't know about how cancer begins and what causes it.
- Sometimes cancer can be caused by some chemicals, pollution (smoke), and other things inside and outside the body.
- Yes, unfortunately children do get cancer. It is rare for children to get cancer. More adults get cancer than children.
- There are lots of people who will help me take care of you when I'm feeling sick. When I'm finished with my cancer treatment, I will be strong again. When I'm getting my treatment, I'll be around as much as I possibly can, and we will do different things when I'm sick, like watch Silver Lining movies and read books.
- Different people have different treatments for cancer.
- Sometimes people have an operation to take the cancer out of the body.
- Sometimes people take medicine called chemotherapy. It uses special kinds of chemicals to destroy cancer cells.
- Sometimes people have radiation therapy to help get rid of cancer cells. It is done with a special machine that is made just for cancer treatment.
- I need all three of these treatments.
- The treatments will not hurt because there is medicine that I will take to take away the pain. After the surgery, my breasts will be sore and it will take some time to heal and get better. Instead of regular hugs, we can do "leg hugs." (Leg hugs were a big hit with our daughter and her friends after surgery!)
- Side effects of cancer treatment happen because the chemotherapy damages healthy cells as well as killing the cancer cells.
- You will be able to see some of the side effects such as: my hair falling out, scars from my surgery, mouth sores and weight loss.
- Other side effects can't be seen such as: feeling tired, feeling sick to my stomach, wanting to rest more, not being able to play.
- After I'm done with all of my treatments, these things will go away.
- We are all going to die sometime. I am working very hard with my doctors to make sure that I don't die from breast cancer.
- Children's questions and concerns about dying may come up anytime after they hear the news about their parent's cancer diagnosis.
- All children, except very young ones, wonder if cancer means you are going to die, even if they don't ask the question out loud. They may be afraid to ask you about death and dying if you haven't been able to talk about it.
- If adults change the subject, or answer them with silence, they will sense that it is not acceptable to talk with you about death and therefore internalize the issue and come up with inaccurate answers on their own. Remember: (as hard as this may be to believe) a child's imagination about cancer (and its treatment) is worse than the reality.
- Feeling better will take a long time because I have been very sick. I'll still be tired, but little by little I'll be able to do more and more. In fact, every day I will feel a little better, which is a Silver Lining. I will feel back to my old self by about Halloween.
- I hope that it won't. I am working very hard with my doctors to make sure that the cancer does not come back.
I feel compelled to reiterate how important it is to be honest with children. Having difficult discussions with them builds a sense of trust and inclusion that children so desperately need when someone in the family is diagnosed with and treated for cancer.
By the way, children are likely to find out anyway. They often learn about cancer from other sources, e.g., school, television, the Internet, their classmates, and listening to other people talk. Some of this information is correct but a lot of it is not.
Additionally, even when children are busy and don't seem to be listening, they often overhear adults talking about subjects not meant for them to hear. When children overhear these conversations, it confirms that adults are keeping things from them. This can fuel the potential for thinking that they've done or not done something to cause the cancer.
Not knowing what is really going on or how to cope with information about cancer can be terrifying to a child.
Talking about cancer does not have to be traumatic. If anything, NOT talking about it is ultimately more traumatic for a child. Not communicating about cancer allows misunderstandings and fears about the illness to grow.
Remember: there are always professionals who are willing and able to help when parents feel overwhelmed by talking with children (Silver Lining). Engaging professional help when coping with cancer is a sign of strength and resourcefulness.
Honesty is the first chapter of the book of wisdom.