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Talking with Children About Chemotherapy

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Once you move past the point of telling children about breast cancer (I happen to call it FBC, for "f-bomb breast cancer"), 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 any uncomfortable expressions 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 the answer is "no," remind them that "you can ask me/us anything, anytime."

Based on my professional (and now personal) experience, It is not a good idea to push a child to talk -- at all. Eventually, the thoughts and emotions will come. By allowing children to talk and share emotions on their own terms, we are giving 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 I am beyond the diagnosis and surgery, it's time to discuss to the next phase of FBC with our daughter: chemotherapy. F-bomb. (Again, f-bombs are for your eyes only... not the child's!) So, that means another 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."

Since the diagnosis and surgery, our daughter (who is five) has been incredibly sensitive, thoughtful, respectful and, best of all, her happy 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 so very important (because they can only take so much at a time).

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 our daughter 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.

We will be talking about all -- yes, all -- of the rockin' side effects of chemotherapy. 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.

Vomiting

Vomiting can 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 stay in bed for days to avoid throwing up. However, it is a real possibility for which we need to prepare our daughter.

Hair Loss

Hair loss can also 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. Our daughter 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 SLs (silver linings).

OK, here's one! While I may feel totally bummed about losing my hair (and potentially physically feeling rotten), 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 our daughter that 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 our daughter sees my acceptance of the hair loss, then she will cope better.

Another silver lining is that 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!). Eww is the vision; however, I need to change this mindset immediately. Right now.

Another hair loss SL: Hermès scarves! The Husband always thought I looked silly when I tried to wear a scarf on my head (my vain attempt to be Parisian chic). 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.

Fatigue

Fatigue can be an especially difficult symptom for the energetic preschooler to deal with. Simple explanations are best (e.g., "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. While she is in school or on play dates, I will give myself 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 assessing 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). I love this concept!

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

  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. Eww. 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 so 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 is "Nowhere Hair" by Sue Glader.

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 our daughter said, "I'm glad I didn't get any cancer cells."

"Me too," 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 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 as a year know when things are haywire in a household, whether it is divorce or FBC. They know.

The great news (and another silver lining) 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 just matter of putting one foot in front of the other.

Wishing you all a day filled with silver linings!

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To read more about Hollye's holistic and humorous journey over, around, above and below breast cancer, please visit her blog, Brookside Buzz (www.brooksidebuzz.com). You may email her at hollye@brooksidebuzz.com.

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