Talking with our kids about cancer is hard. There are a number of resources available that can help both you and your children cope with a diagnosis, and the hard conversations that come with it.
To tell or not to tell?
Everything I’ve read recommends the same thing: tell your children. Children are very sensitive to changes in their caregivers – they know something is going on. Having open, honest conversations with them accomplishes a number of things:
1) They get accurate information.
Children have wonderful imaginations, and what they may be imagining is wrong with you may be much worse (or just wildly off) than what is actually happening. Being clear and concise with them helps them understand and not to worry so much.
2) They know they can talk to you.
Initiating conversations with your children about cancer lets them know that this is a safe topic. It shows them that you are willing to talk about this, to listen, hear their concerns, to answer questions. Building trust with your children so that they will come to you when they need you is priceless.
3) It takes some of the scary away.
Remember those imaginations? The unknown is worse than the known. Talking about your health demystifies cancer, takes some of the scariness out of the word and the situation. Children may worry about what they don’t know. If they feel like things are being kept from them, they may worry that the adults aren’t really in control, and don’t know what’s going on either. While it is true that this diagnosis makes you face those realities as an adult, acknowledging this to your children will help them feel that you ARE in control, that you are able to take care of them.
The American Cancer Society has published Cancer In Our Family: Helping Children Cope With A Parent’s Illness. It’s written by Sue P. Heiney, PhD, RN, FAAN and Joan F. Hermann, MSW. It is a truly excellent resource, with advice for many family situations and different diagnoses/prognoses. From the first chapter, “Helping Children Understand A Cancer Diagnosis”:
Do not keep your cancer diagnosis a secret. It is better to talk with your children about what this diagnosis means for you and your family. Some parents think their children will worry more if they are told the facts about the situation. Yet experience has shown that talking about a parent’s cancer diagnosis helps lower a child’s anxiety and improves family communication in general. Children also do not have the same life experience as adults; therefore, their emotional response to a parent’s cancer diagnosis may be different from that of adults. Trying to protect children by hiding a diagnosis is not a good idea. Cancer is an impossible secret to keep and even younger children will most likely suspect that something is wrong anyway.
Children can often pick up on the anxiety and worry of their parents. Usually they fear and believe the worst. If they are not given honest explanations, then they will usually draw their own conclusions. Your children may feel rejected if you are being secretive. They may conclude that you do not love them anymore or that they are being punished for being “bad.” Also, the effort it takes to keep such a secret may rob you of precious energy.
Keeping a secret can create an increased sense of doom for children. They may think that whatever is happening in the family is too terrible to share. When a cancer diagnosis is kept secret, children can also feel isolated from the family. Parents have a natural desire to protect their children from pain and hardship. In this situation, however, being overly protective can backfire and only make things harder. Instead, you can help your children cope with the challenges of cancer in your family and enable them to develop effective tools for dealing with other stressful situations later in life.
Excerpt from Cancer In Our Family, Second Edition, pg 2-3
Personally, we told our children about my diagnosis very early on. They were young – just 15 months and 2 and a half years. There were big changes for our family – both were still breastfeeding and we had to wean abruptly. I was hospitalized for surgery and away for appointments and tests. We needed to move from South Africa to the USA. Over the last months as they’ve grown, we’ve had more conversations.
We are honest and age appropriate, with a few key talking points that we have reinforced, bringing them up again and again:
- We don’t refer to me as sick (unless I actually am!). We say I have cancer, and that the cancer makes me sore, tired, dizzy, etc. Sometimes I feel sick, or medicines might make me feel sick, but we are clear that they can’t catch cancer. It’s not a germ, not something that’s contagious. It’s okay to hug and kiss me.
- It’s not their fault. Nothing that they did or didn’t do caused my cancer. Children are very self-focused and this is a common concern that children have. We tell them often, and without them bringing it up, nearly every time we talk about cancer “It’s not your fault.”
- We give a simple explanation of what cancer is: “Our bodies are made up of cells. Sometimes, something goes wrong and they become bad. Cancer cells are bad cells. They hurt the good cells, so we need to get rid of them.” For us, that’s meant conversations about surgery, about what the doctors do to get rid of the bad cells.
- They will be taken care of. We live with my parents-in-law now, which gives our kids two more full-time caregivers. We reassure them that even when I am in the hospital and Daddy is with me, we love them and Grandma and Grandpop will take care of them.
- We tell them that we will do everything we can to stop the bad cells. We also tell them that someday, if we can’t stop the cancer anymore, I will die. We are religious and incorporate our beliefs into that conversation. I think that regardless of what you believe about death, preparing children for its inevitability helps normalize it and take away some of the fear and uncertainty that surround death. I hope I get a lot more than 20 years with my children, but it’s a reality of this cancer that if I get that much it will be an accomplishment. I believe that preparing them for my death when it is a (hopefully!) long way off will enable them to better deal with it when it comes.
Cancer In Our Family is an excellent resource for helping children understand and cope with your diagnosis, treatment and changes to family life. It includes questions children may have, tailored advice for speaking to different age groups of children about each aspect of cancer, hands on tools, and sections on advanced or metastatic cancer and dying as well as considerations for single parent families and LGBTQ families. I highly recommend it. (I paid full price for my copy and make no money if you click the link and buy it on Amazon.)
The American Cancer Society also has a fantastic online resource section for helping children cope with a loved one’s cancer. There are sections specifically about diagnosis, treatment, progressive cancer, support services, terminal illness and death of a parent. The link will take you to the site where you can click on different topics to read through online, or even download in pdf form to save, print or share.
Macmillan Cancer Support has a great page on talking with children with advice about telling your children about your diagnosis, explaining treatment, sharing your experience with them, tips for coping with everyday life, and includes a video of a cancer survivor explaining how she approached her diagnosis with her children.
Last, but certainly not least, is Telling Kids About Cancer. This website offers a step-by-step guide to having these hard conversations. Your conversation with your kids will have lots in common with others, but it is also unique, and this guide offers great suggestions to help YOU have the conversation YOUR family needs. It’s not a script, but truly a guide. That link is a tool that you can use to plan your conversations. It offers space for you to write down what you want to say and provides suggestions of questions kids might ask to help you think about your answers ahead of time. It challenged me to clarify my goals, those ‘talking points’ I mentioned earlier, and helped me sort out what was most important for our family, both in terms of the ‘need-to-know information and the overall message we wanted our kids to get.
These are hard conversations. They’re ones I wish I never had to have. They are also important ones and I’ve seen my children, young as they are, benefit from them. They know where I am and what’s happening to me when I am gone. They see my scars and have a basic understanding of what they are. They come to read or snuggle or play quietly on my bed when I can’t go play with them and they understand that it’s not that I don’t want to get up and go outside, but I can’t and that’s okay, we’ll do something else together instead. Cancer has affected our whole family, and talking with them about it includes them in something that has a big impact on their lives.
How do you talk with you children about your cancer? What is hardest for you about those conversations? Do any of these resources seem like they may help?
If you’d like to read more of our personal story, check out my piece Talking With My Two Year Old About Cancer. For community and connection with other parents with NETs, come join our Facebook group, and like our page for blog updates.