Barbara Jaffe

I know this is a tough subject. We love our children and grandchildren and want to protect them from everything out there that will make them hurt. And if you have been diagnosed with cancer and have young children or grandchildren, the worry of when and how to tell them about this scary illness is probably at the top of a long list of your AD (after diagnosis) concerns.

I recently put a resource together for newly diagnosed patients, which includes several videos, where I briefly broach the topic of telling family about cancer. The timing is uniquely personal to each new cancer patient — but the sooner the better, and don’t keep putting it off. Good advice, yes, but also scanty on the “how” part, especially as it applies to telling the youngsters in the family.

The “how” part, like the timing part, is also uniquely personal, and is different for each of you as they were the differences in each of our BC (before cancer) family lives. There are several online sources that offer advice on how to tell your kids that you have cancer. And they are worth looking at, to see if any relate well to your family circumstances, and resonate with you, personally, as a parent.

There are four things I would emphasize about what you are seeing online:

First, this is not a “one-and-done” task. Some advice you may find may suggest you make elaborate plans of the right setting, the right time, the right set of words, and map out what you will say when your kids ask questions. Sounds to me as though you might interpret that to mean you need to take days, maybe weeks or months, to prepare for that first conversation. Don’t fall for that or use it as an excuse to postpone. Your kids, no matter how young, know something is wrong. So, don’t keep putting it off until you work out the perfect speech. It is merely the first conversation, and probably not nearly the most important of those to come, in terms of helping your kids or grandkids come to grips with the concepts of cancer, illness, treatment, and separations due to hospitalizations — and what all that is going to mean to them.

And, it is not a “solo act” kind of task. Again, some of the sites tell you to pick the person who will tell your kids. I say it doesn’t matter who, or how many people, have these initial conversations. I think it is much more important to get some basic facts said – like getting the word “cancer” out on the table, because they are overhearing the word, and are sensing everyone’s fear and worry; and like reassuring them that cancer isn’t something they can “catch” from your hugs and kisses; and repeating as many times as possible that no matter what else is happening or is going to happen, they are loved and will continue to be well cared for. Certainly, the parent or grandparent who was diagnosed with cancer should play a major part in that first discussion with each of the children, but you don’t need to be the only one doing this.Set yourself, and them, up with a path going forward that encourages them to share their concerns with other adults on your “home team.” Kids and grandkids need to know that they can come to several people among your family and friends and clergy when (not if) they have questions and worries. This way, when both you and your spouse or primary support person are too distracted with the everyday burdens of living with cancer – your children know that there is someone else with whom they can share their feelings and concerns.

And, unless you have an only child, know that for each of your children, this series of conversations and intercommunications is individual to each one. Children of different ages and emotional maturity are going to require very different conversations. And they will have much different needs, going forward. And, if you can, identify for each of your kids the persons in their lives who are good “go-to” family members or adult friends, with whom each child seems to most easily and comfortably interact. Then work out with them a plan to support and mentor that child. Finally, if your oldest or most mature-acting child seems to be someone to whom the younger child or children go to when they have concerns or feelings they want to share, keep an eye out for that child to offer support when he or she gets overwhelmed.

And last but certainly not least, my advice to you parents is this: Your cancer will undoubtedly impact the lives of your children. For them, coping with cancer of a parent can produce both developmental and behavioral issues. Look around, now, for support services for your kids in your community. Some communities’ cancer support services even include specialized programs, support groups, even summer camps for kids from ages 6 and up. If your community is one of those, it is worthwhile to get your kids into these programs. It provides a social bonding of kids with the same worries and fears and frustrations, and they do truly benefit over the months and years as part of that peer group. If your community does not offer such programs, check your insurance benefits to see if there are mental health services for counseling your kids, including support groups and family counseling.

In addition to the advice offered online, some cancer centers offer psychosocial services that include help with how to handle the delicate first conversations when you share with your young children the news of your cancer diagnosis.

And there are a few children’s books that focus on stories about a parent or grandparent who has cancer, written from the viewpoint of a younger child, tween or teen. If you decide to get one of these books, make sure that you read them first, yourself, to see if they make sense and apply to your family circumstances.

There is one set of books for younger kids ages 2-6 (one for a sick parent and another for a sick grandparent) written by Kathleen McCue, called “Someone I Love is Sick.” It is (like My Notebook) published as a loose-leaf binder, with a plastic pocket to put the pages that don’t “match” your family.You can read to your children your hand-selected pages of the book. Maybe in a few months or a year, you may add and subtract pages, as appropriate.

All the above, is stuff that I have pieced together from authorities and resources I have researched.

Now, I have my own two cents to add: Please, look for advice and resources that do not further complicate or adversely affect your own efforts to cope, but rather offers a path for you to do the best for your kids but still focus on all the aspects of you and your whole family living with cancer. I am asking you, and the other adult members of your home team, to remember that there is no right or wrong way to do this. Some days, you will think you really got it right and some days, not so much.But it serves no one in the family well, if you are not only sick and fighting your disease, but also making yourself sicker worrying that your kids are being neglected while you are on this journey.

If you have any questions or comments or would like to share your own stories, please feel free to contact me at barbara@newcancerpatient.org

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Please, look for advice and resources that do not further complicate or adversely affect your own efforts to cope, but rather offers a path for you to do the best for your kids but still focus on all the aspects of you and your whole family living with cancer.

Barbara Jaffe

How to Have the Cancer Talk with Children

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