Still the Best Policy (being honest with your children about cancer)

July 5th, 2011 § 18 comments

I met a woman who told me something shocking.

It wasn’t that she’d had breast cancer.
Or had a double mastectomy with the TRAM flap procedure for reconstruction.
Or that she’d had chemotherapy.

What made my jaw literally drop open was her statement that she has never told the younger two of her four children that she’s had cancer.

Ever.

Not when she was diagnosed.
Or recovering from any of her surgeries.
Or undergoing chemotherapy.

She never told them.
To this day– five years later– they do not know.

I like to think I’m pretty open-minded. But I confess, it took a lot of self-control not to blurt out, “I think that is a big mistake.”

I’m a big believer in being open and honest with your children about having cancer. My caveat, using common sense, is that you should only give them age-appropriate information.

When I was diagnosed with breast cancer Tristan was six months old. Of course he didn’t understand what cancer was. Colin, age 5 at the time, understood some of what was happening. I explained to him what cancer meant, that I was going to need surgery to take the cancer out, where the cancer was, what chemo was, what it would do to my appearance and energy level. Using words like “I will be more tired than I usually am. I might feel sick to my stomach and need to rest more” explained things in words he could understand.

Age 8 and the oldest at the time, Paige understood the most when I was diagnosed. She had bigger questions and well as concerns about me (“Will I get it too? Who is going to take care of us? Are you going to be okay?”).

It’s not that I think small children always understand everything. But they are certainly able to sense that things are not “normal.” They can tell when people are acting strange. I think it’s important that they know there is a reason for that change. Children have a tendency to be egocentric; they think that everything is their fault. They may think they have done something wrong if everything at home feels different.

The woman told me she didn’t want to worry her children. She thought it “unnecessary” to tell them. She said when they got older she would explain it. I argue that by keeping her cancer a secret, she runs the risk of doing the opposite: making cancer seem scarier and more worrisome.1

If children hear words like “cancer” casually in conversation as they grow up they will be comfortable with them; in that way, they won’t be frightened of them. If they understand the truth of the diagnosis and treatment they are dealing with reality. By hiding the truth, the unintended consequence is to make it seem worse than it is. By not telling children, and waiting until they are older, it reinforces the idea that cancer IS something “big and scary.” After all, if it weren’t, you would have told them already.

I think being secretive is a step backward to the days when cancer was only talked about in hushed tones: the “C” word or “a long illness.” These concepts might seem primitive to us now, but it wasn’t long ago that these vague labels were the norm. By showing our children, our friends, our neighbors, that we can live with cancer, live after cancer, we put cancer in its rightful place.

To me, the deception that goes on to lie to children about where you are going, what you are doing is lying about a fundamental part of your life. Cancer isn’t all I am — but it is a part. And it’s an important part of my medical history. If for the past 3 years I’d covered up where I was going and what I was doing, the web of deceit would have been extensive. I can’t (and won’t) live a life like that.

Further, I think it’s a poor example to set for my children.

Lying,
covering up information,
and omitting important information are all wrong.

With rare exception, the truth is always best.

Presented in the proper way,
commensurate with a child’s age,
a difficult situation can be not only tolerable but surmountable.

It takes work. It takes parents who can manage not only their own emotions about having cancer but also be involved with helping their children cope with it. It’s more work, but it’s worth it.

I think that woman made a mistake. I think her decision was harmful. I am sure she thinks she was doing her children a favor. I totally disagree. I think keeping this type of information from children “in their own best interest” is rarely– if ever– the right thing to do.

April 9, 2010

  1. She decided to tell them that she was Christmas shopping, not staying in the hospital to recover from surgery. She made up reasons why her torso hurt and why she couldn’t lift things. []

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§ 18 Responses to Still the Best Policy (being honest with your children about cancer)"

  • Kellie J. Walker (@Yourlifeingear) says:

    Totally agree, Lisa. Totally agree.

  • PA Smith says:

    I agree totally. And when they realize what she hid from them, they may wonder what other she lies (through omission) she has told them throughout their lives. She risks the trust they have in her and that is hard to recover once it is broken.

  • Diane says:

    She also may be losing an opportunity to mentor and counsel others with a similar diagnosis if she has to censor what she says when her children are around. My children were 2, 3, 7, and 10 at my diagnosis. Obviously, there was no way for them not to know. They obviously all did not understand what was happening but if swept behind me (like so many want to do), I’d never have been able to talk to a neighbor, or use my experience as a springboard to help others. I started a business, Pink Pockets (www.pink-pockets.com). I invented a self-adhesive pocket to help provide comfort for patients with drains after surgery. My kids are so proud (even my friends kids) of my new product and it has been very encouraging. I know there is a huge swath of people diagnosed with cancer that would never go to ta ‘support group’. They want to do their time and be done. But sometimes the WOULD want to have a cup of coffee with someone to share – side effects, what worked, what didnt, etc – that you just can’t get from a virtual support group like breastcancer.org. Not only is she not sharing with her kids, but what about the mom of one of her kids who is suddenly diagnosed and needs someone to help shepherd her through? My 6YO had a friend in class this year who this happened. I was able to help her navigate through some of the ‘best practices’ because people knew I had had cancer and they told me I could help. A missed opportunity to provide comfort.

  • Becky Sain says:

    Absolutely! We do NOT give kids enough credit for intelligence, understanding, compassion. If we shield them from the knowledge of a disease like cancer then how in the world are to expect them to take steps to care for their health?
    I’m a big believer in open honest communication with my kids. We talk about cancer and poverty and gay rights and marriage equality and standing up for themselves. Silence is the enermy in mist situations, especially when it comes to health and cancer.
    GREAT post my lovely friend.

  • Christiane Alsop says:

    Totally agree. Great post laying out the reasons why we need to be open.
    Brava. And thanks.

  • Bridget Allen says:

    I hid my cervical cancer from my children, friends, and family. I was trapped in an abusive marriage to the man who’s lies got me the hpv that caused my cancer. If people knew I had cancer, they would either know I’d gotten an STD from him, or thought I’d already had one. Either way, he was not going to have that go public, so he forced me to keep it secret. I was too weak to fight him and cancer at the same time. I could not get out of the house with all my children, so leaving him was not an option. When I was well enough, I built a new life. My young sons still only know a little, as I won’t shatter their relationship with their father who, with psychiatric help, is a changed man. My adult daughter now understands, but has not forgiven me.

    • Greg says:

      Forgiven for what, Bridget? Leaving? Not leaving? You did what you had to do, and you did it with courage. Not to cause any disputatious goings-on between you and your daughter, but she was not in your shoes. You did what you thought was right. I do wish you’d had someone else around you strong enough to help you earlier, because we all deserve the best life possible, every day.

  • This is a very thought-provoking post, regardless of the illness. Any parent and sufferer of chronic or terminal disease can identify with both sides of this issue.

    My mother was diagnosed with breast cancer my freshman year of college, and I was not prepared to return home from summer break and find her thin, weakened, and bald. I had been told of the illness, but my parents decided to spare me the details to ‘protect me.’ They only succeeded in shocking me.

    My daughter was 2.5 when I was diagnosed with scleritis, a chronic, severely debilitating inflammatory disease of the eyes. I required chemotherapy treatment, and we shared all the details with her from day one. She understood I was very sick and I needed medicine and lots of love from my family to help my recovery.

    To this day my daughter is not afraid of illness, of medicine, or of healthcare professionals. I credit our family’s honest approach and sharing about my own disease with directly helping her adjustment and comfort level.

    Thank you, Lisa, for starting an important conversation.

    –Amy P.

  • I cringed when I read that Paige asked if she’d get it too. Ugh. That must have been SO freaking hard.

    My mom and this lady would get along great. We used to see my grandmother in Quebec each summer. We once showed up at my grandmother’s house (my mom’s MOM) with my new baby brother. My grandmother looked at my mother and my mom said, “Oh.. I had a baby.” Then she did it again the next summer when she had my next brother. (No lie)

  • JoanneFirth says:

    Excellent and important post. Telling my children was the most difficult part of having cancer. Especially with the information changing as it did in the beginning. My surgeon was optimistic about the spreading before she removed the 2nd batch of nodes. I was so naive at the time, I believed the hopeful news and shared that with the kids, only having to tell them later on that it was more advanced than originally thought. If I knew then, what I know now, I may have waited a little while until I had a clearer understanding of how advanced the cancer was.

    All in all, they wanted and needed to know what was going on with me, and there was an open line of communication the entire time. I am glad that I told each child individually. This gave them the opportunity to have their own reaction and questions. I was able to spend the time comforting them on a one on one basis, dealing with their specific concerns about their mom having cancer. It’s still pretty fresh for me, and is one of the most painful parts of the whole ordeal. You’re post is so welcome, as it reinforces how important it is to tell your children, as well as keeping them informed through the process. Thank you for this Lisa!

  • Pamela Carlson says:

    I agree with you, Lisa. I have no children, but I was very honest with everyone who cared about me regarding my diagnosis. Trying to remember who knew how much if I’d given out varying levels of information would have been too taxing, and your point about putting cancer in its place is well taken. I found having information to be the best remedy for nebulous fears, both mine and those of others.

    When my grandmother had breast cancer, I didn’t know every detail, but no one lied about what was going on. She went through periods of being very ill and periods of remission before she died. I can’t even imagine what it would have been like if we hadn’t known she was battling cancer, but I’m sure it would have been much worse. I do think it’s best if you can trust and respect people enough to be truthful.

  • Oh, my stars!! Where do I start? What was she thinking? How did she even begin to hide something like this from them? How did you bite your tongue, Lisa? I agree with every word you’ve written. What’s more, I was a kid back when the “C” word wasn’t talked about.

    No one told me my father had cancer, so I shouldn’t be too surprised they didn’t tell me when he died!!! It took mother 2 days to tell me what I already knew, that he was dead. I was at my piano lesson when the phone rang. My piano teacher gasped and said something like, “Oh, I’m so sorry. Don’t worry. She can stay here as long as needed.” Talk about growing up with Cancer Phobia! After James and I were married, the “joke” in our house was that if you’d banged your elbow on the table & it hurt, I thought you had elbow cancer. Yes, kids can think it’s their fault or have abandonment issues. When my father wasn’t in the hospital, which wasn’t often, I was only allowed to go into his room where I sat on the edge of the bed and we talked like strangers. Strangers don’t ask probing questions.

    I think she’s made a terrible decision every way you want to cut it.

  • Lisa,
    This is a very important post. As a mother and an educator I cannot even fathom keeping such a secret. Children are capable of handling the truth if they are given age appropriate information. We need to give them more credit. Of course, I also understand how mothers want to protect their kids, I did my share of protecting myself and my kids are older. For instantce, I didn’t allow them to come with me to chemo. But I think this woman definitely made a poor decision here. Honesty is always important, but on life’s “big stuff” it’s essential.

  • Lisa, can I ask how you approach your Stage IV status with your kiddos? I was diagnosed Stage IV straight out of the gate, when my son was just shy of 6 months old. That was two years ago. He’s still not old enough to understand cancer, but knows that mommy goes to the doctor a lot. I’m just wondering how to present things to him as he ages (yes, assuming I’ll be around for a few more years) — since this reality is the only one I’ve got. Thanks. And hugs.

    • Lisa Bonchek Adams says:

      Hi! Have you looked at the posts starting in October after my diagnosis? There are some that address this… A lot of the approach is age-dependent, of course. “The Hardest Conversation” is one relevant piece but there are other posts in there too. Hope they help.

    • Lisa Bonchek Adams says:

      I know you mention your very young child but wasn’t sure if you have other children as well. If you need tips beyond what I say here for talking to him let me know.

      I think a lot has to do with using specific words for what things are (“cancer” not “sick” which implies getting better and also is confusing if he has a cold and you use same word “sick”) and also about chemo (it’s not “medicine” or “magic pills” or “toxic juice” as some I have heard say … Again he will find it confusing that this medicine might make hair fall out or feel tired so what about the “medicine” he takes for a fever… He may be confused and wonder if it will do the same to him!).

      Asking if he has questions, what HE wants to know is always key. And yes, I agree that there’s no need to focus on the incurable component while he is this age. As he gets older you explain more and see what his concerns and questions are.

      Hope this helps…

  • Anne says:

    2014 is the 40th anniversary of my mother’s death; I was 12 when she died of metastatic breast cancer; she was 41.

    My parents had made the decision to “protect us” (my sisters and me) by not ever telling us that she had cancer. Whenever I asked a question about her clearly deteriorating health, I was told that everything was fine, not to worry, she had a “back problem” that at times was painful. Their statements were directly at odds with everything I was seeing. She was not “fine.” I DID worry. I worried ENDLESSLY – and I then questioned my worry because I was repeatedly assured that all was well and good.

    All was not well and good in our house. And in the end, I completely lost the ability to “trust my gut.” My gut had told me that something was wrong; my parents told me not to trust that.

    I understand that my parents meant well – they meant to protect us. But lying is not a protection. Not when cancer is involved.

    HUGS Lisa!

  • JB says:

    You are so right! Children pick up on moods and murmurs, and if we don’t explain to them what is going on, then they will misinterpret those moods and murmurs. Often, they wrongly will see the negatives as somehow about them. Children are the center of their own universes, after all. You are so wise to embrace the truth (albeit shared in a developmentally appropriate way), hard as it is to do… Another wonderful post, although I found it years late.

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