Discussing Chemotherapy with Children

Once you move past the point of telling children about FBC, it is important to tell them that you are always available to talk about it with them: anytime, anywhere.  A general rule of thumb is to let children initiate conversations; however a little prodding doesn’t hurt.

For example, you could ask:  “Have you been thinking at all about Mommy’s breast cancer?”  If so, follow-up with, “Would you like to talk about it?”

Another question to ask is: “How are you feeling about Mommy’s breast cancer?”  If children are willing to share emotions, allow them to flow.  Do not stop the sometimes uncomfortable emotions of a child’s sadness (that includes crying) or anger.  These are healthy responses. It is so much better than their holding emotions inside only to be manifested later through other behaviors. As difficult as it may be to witness such emotions in a child, it is important that we do.

Another option would be to ask:  “Do you have any questions that you would like to ask about Mommy’s breast cancer?”  If they say “No” to any of the questions remind them that: ” You can ask me/us anything, anytime.”

We don’t want to push – at all.  Eventually, the thoughts and emotions WILL come.  By allowing children to talk and share emotions on their own terms, we are giving the children a sense of control (in a seemingly uncontrollable situation).  When a child is encouraged to have a component of control in a situation, self-esteem and confidence develop.  This lesson applies to life in general, not just FBC.

Now that we are beyond the diagnosis and surgery, it’s time to move 4 ¾ to the next phase of FBC: Chemotherapy. F-bomb. (again, F-bombs are for your eyes only…not the bambino).  So, that means another whole set of conversations.

We have the conversation about chemotherapy the exact same way that we told her about FBC, excuse me, I mean Mommy’s “Breast Cancer”.

Our 4 3/4 daughter did incredibly well upon my arrival home from the hospital.  She has been incredibly sensitive, thoughtful, respectful and, best of all, her happy 4 3/4 self.  When friends come over and give me gentle hugs or kisses, she often interrupts to warn them to “be careful of  Mommy’s cancer cells.”

In addition to my encouragement of talking, talking and more talking with children, phasing of information delivery is also very so important (they can only take so much at a time for goodness sakes).

So, here is where we are and where we are going:

  1. Diagnosis: done.
  2. Surgery: done.
  3. Chemotherapy:  next up.

Now, because we have a concrete plan of action, it’s time to talk about the next phase of treatment.

It is best to talk in phases. Talk slowly.  Allow for interruptions and questions.  As I have mentioned previously, the extent to which you communicate with children is contingent upon age, maturity and prior experiences.

We told 4 3/4 that while I was in the hospital, the nurses and doctors did a fantastic job getting most of the cancer cells out, but that I have to take medicine to get the rest of the cancer cells out.  Yes, here it comes: FC (translation:  F-bomb Chemotherapy).  Vey is mere.  For  4 3/4, we will simply refer to it as chemotherapy….though you all know how I will be thinking about it.

We will be talking about all-yes, ALL-of the rockin’ side effects of FC. Preschoolers have a tendency to notice and be very affected by the side effects of cancer treatment, e.g., fatigue, pain, hair loss, vomiting.  Preparation is, as I’ve mentioned, hugely important. However, when these side effects do happen, they can still be a shock.

On a positive SL (silver lining) note, I wear my hair very short.  I am not a person whose identity is intimately connected to my hair.  Now, that said, when the time comes, I have a feeling that some kind of personal, emotional F-bomb will fall in conjunction with my hair (i.e., looking at myself in the mirror and seeing a bald head reflecting back at me!). Ewwwww is the vision…however, I need to change this mindset immediately.  Right now.  My best friend actually looked surprisingly cute bald (and I am the person who would have gently suggested that she wear a wig!).

Back to 4 3/4.

Hair loss can be a really dramatic event to which most people have a negative response. DUH. Looking in the mirror is a constant reminder that life is not the same. 4 3/4 will imitate our response (i.e., she will be positive if we are positive and  well, we don’t even need to mention the potential for a negative response). This means that we have to be on the serious lookout for SL’s.

OK…here’s one!  While I may feel totally bummed about losing my hair (and potentially physically feeling overall like S–T), it will help to balance the situation with a reminder that the purpose of the chemotherapy is to get rid of the cancer cells.  Chemotherapy is my nuclear arsenal.  It is the magic potion that will make me better. Although I will look different, we will tell 4 3/4, it will be worth it if the treatment is successful.  I will certainly acknowledge that losing my hair will be a big bummer, but if 4 3/4 sees my acceptance of the hair loss, then she will cope better.

Another hair loss SL: Hermes scarves!  The Husband always thought I looked silly when I tried to wear a scarf on my head…well, NOW I have a legitimate reason to wear scarves on my head (and hopefully I will look cuter than I used to).  Perhaps I just need a lesson or two.

Vomiting can also be a frightening symptom for children to see.  Vomiting is frightening for ME.  If there is one thing in the world that I dislike the most, it is barfing.  Freaks me out.  Can’t stand it.  I’ll lay in bed for days to avoid throwing up.  However, it is a real possibility for which we need to prepare 4 3/4.

SL: There are some fabulous anti-emetic (anti-barf) drugs now….including a naturally grown one specially permitted in the state of California (yes, medical marijuana).  The legalization of this anti-emetic (supported by the National Cancer Institute, by the way) was challenged in the November election.  It DIDN’T PASS, meaning that it’s still legal in the state of California!  Let’s just say that it was the most important component of the November elections that I was watching, if you get my drift.

Back to the Bambino…

Fatigue is an even more difficult symptom for the energetic preschooler to deal with. Simple explanations are best:  the medicine makes mommy very, very tired.  I will also do my best to plan my day around her schedule.  In other words, I will drag my tush out of bed in the morning to be with her then and for a few hours after school.  And we still have SL movies to watch (though I am a little over the princess movies at this point!) While she is in school or on playdates, I will allow the time to zonk out, if I need to.

In her book, When a Parent Has Cancer: A Guide to Caring for Your Children, Wendy Harpham brilliantly introduces the concept of an “Energy Bank Account.” This is a place that holds emotional and physical energies. Though calculating the cost of activities will take time (e.g., “Oh sure, I can make it to the birthday party!”), I will plan to make “deposits” so that I can have as many reserves as possible for the bad times that will inevitably occur (it is FBC, after all).

In addition to dealing with the side effects of FC, there are several other things to keep in mind when coping with the ongoing hardship of FBC and the added stress of FC:

  1. The most important things that 4 3/4 need are to feel my presence (even if for brief periods of time) AND for me to maximize my chance of getting better (by resting as much as my body needs).
  2. Adults must be careful to keep cancer and its symptoms separate from any illness that a preschooler might have had.  For example, never say, “Mommy is tired like you were last summer when you had a cold.”   Children could easily conclude that the next time they have a cold, it means that they also have cancer.
  3. FBC has the potential to dominate all attention, especially in the eyes of children. It takes a diligent, organized and sensitive family to ensure that this does not happen. One way to curb this dominance is by protecting the time and energy that you give to your children.  Also, it is best to avoid talking about FBC all of the time.  I certainly don’t want to talk about it constantly and it is even worse for a child to hear incessant discussions about FBC.  Ewwwww.  If there is one thing I am learning, it is that FBC does NOT have to take over your entire life.  That gives it way too much power.  It is simply one (albeit annoying, frustrating and tiresome) aspect of my life.
  4. Maintain as much normalcy as is possible (I’m going to continue to say this because it is sooooo important!). Normalcy in terms of bedtime routines, “house rules” (as we call them) and eating habits are absolutely crucial and non-negotiable!

One book that has been especially helpful during the transition from post-surgery to chemotherapy are:

Talking with children can be challenging because (as they should be encouraged to do), they have the potential to ask difficult questions and say things that can be hard to hear.  For example, today while driving in the car-out of the clear blue sky-4 3/4 said, “I’m glad I didn’t get any cancer cells.”  I said, “Me too.”

However, despite the difficulty, the best thing you can do for your children is engage them in dialogue which thereby engages them in the entire FBC process.  Remember from an earlier post that many loving, intelligent and responsible parents find themselves trying to hide the truth from children because they think: “children can’t understand what is happening”. That is pure and utter malarkey. Children as young a year know when things are haywire in a household, whether it is divorce or FBC. They  K  N O W.

Avoiding communication with children also sends the message that either they are too unimportant to share the information or that it is so awful that it cannot be discussed. Either way, a child is left alone with the distressing information. How awful is that? Further, this aloneness forces them to draw inaccurate conclusions or find maladaptive ways of dealing with FBC. While it may seem hard to believe, we all need to know that a child’s imagination has the capacity to create things far worse than the reality. Really.

The great news (SL) is that no one has to do it alone.  There are now wonderful resources to help this challenging process. Always remember that:  We. Can. Do. This.  Sometimes it’s a matter of just putting one foot in front of the other.

Wishing you all a day filled with SL’s!