All In The Family

As an oncology therapist, Michelle Bronzo provides individual and group counseling for cancer patients and their families, helping them adjust to the wide impact a cancer diagnosis can have on the family system.

She joined the staff of Life with Cancer, a leading cancer education and support organization dedicated to helping patients and their loved ones learn about and cope with cancer and its treatments, after working as a hospice bereavement counselor.

In a recent discussion, she told us what motivates her work, offered tips on how to talk to children about cancer, and shared some of the best ways to support families after a diagnosis.

Here are edited excerpts from our conversation.

How did you get into this work?

I think that many people feel compelled to do this work because of personal experiences with cancer or loss, which is certainly true for me. In February 2002, my dad was diagnosed with Mesothelioma, a rare and aggressive cancer of the lung lining caused by asbestos exposure. He was very hopeful and optimistic, willing try anything that might help him, including surgery to remove one of his lungs, 10 weeks of radiation, and heavy doses of chemotherapy. Despite being massively impacted by the effects of treatment, he still focused on the projects that were important to him at work, made time for family and friends, attended our sports games and theater performances, and even walked all 26.2 miles of the New York City Marathon. He set an example of how people could “live well” with cancer, which is the foundation I work from in my clinical work with oncology patients and their families.

My dad died from his cancer in May 2004, an amazing feat considering he had initially been given an estimated life expectancy of a couple months. While we were fortunate to be surrounded by a strong support system in our community, we could have really benefitted from professional support. Support from someone who just “got it.” Support from someone who would be able to hold all of our feelings. Support from someone who wouldn’t turn away from pain. And we would have especially benefitted from opportunities to meet other kids who had a parent in treatment, and later, those who had lost a parent.

The work I do now at Life with Cancer allows me to provide the professional support to kids and families that in retrospect I wish we had received.

Much of your work is focused on children and adolescents. What are some tips for how to tell children about a cancer diagnosis?

A cancer diagnosis impacts the entire family, and as such, conversations should include children to keep them informed, to answer any questions they may have, to dispel myths, and to give them space to express their feelings. How well children process a cancer diagnosis is often connected to what has been communicated by adults.

It’s important to be upfront and honest. We see a lot of families who are trying their best to “protect” their children. Parents often do not want to tell their children about a cancer diagnosis because they are afraid it will upset them. But children are very insightful and can sense that something is wrong by picking up on cues like hushed voices, closed doors, private phone calls, red-rimmed eyes, and a parent’s distractedness. Not telling children information can make them feel isolated or minimized, create a sense of secrecy, inflame personal fears, and breed mistrust and anger, especially if they inadvertently find out the truth from someone else. Children also have wonderful imaginations, and without the proper information they may invent an explanation that is even more frightening than the reality.

Instead, tell them what has happened in simple, straightforward, age-appropriate language as to not overwhelm them with too much information. Depending on their ages and coping styles, it may be beneficial to speak with children separately.

It can also be helpful to practice what you will say. Parents often become overwhelmed when they think about speaking with their children, as they are in the position of having to juggle their own emotional reactions with those of their children. While it may be difficult to speak calmly and reassuringly about the situation, this will benefit how your children receive the news. Sometimes parents need to take a few days after the shock of the diagnosis to recalibrate and be in a more measured place from which they can have this conversation. Practice in the mirror or with a loved one in advance to work out the kinks and to provide a realistic—but hopeful—message.

Prepare to answer potential questions like “Will you die?” with concise answers like, “Some people do die from cancer, but many people who have cancer do get better. I am getting excellent care from my doctors and I am doing everything in my power to get well. If anything changes, I will be sure to let you know.” Validate that this is a common concern that is shared by both children and adults, and that no matter what happens there will be someone there who will love and care for them. In addition, keep children informed about major changes in order to minimize them having to worry about what is happening.

And be sure to let children ask questions. Encourage children to ask any questions they may have, which opens up the door for an ongoing dialogue. It’s okay to say “I don’t know.” You may not have the answer based upon limited information you have at the time, or it may be a question that does not have an answer. Also, remember that questions do not need to be answered immediately! There is always the option to say something like, “You’re asking a really great, important question, and I want to give some thought to It or ask the doctor. I’ll let you know on Monday.” Always acknowledge their asking and make sure to follow up with them on questions that have been unanswered.

And if your family has a hard time with face-to-face conversations, here’s a tip: keep a journal by the refrigerator, in which parents can relay information from appointments and children can ask questions in return. Encourage all family members to look in the book daily. This allows time to digest what has been written or asked, and to formulate an answer after it has been given some thought.

Finally, don’t be afraid to use the word “cancer.” Another way that parents try to protect their children is by avoiding using the word “cancer” and using euphemisms like “sick,” “mass,” or “boo boo” instead. This can be very confusing for children when they get sick themselves with something like a cold or see others who are sick, and it may make it difficult for them to differentiate a serious medical condition from common, temporary illnesses. Referring to cancer by name—as well as the body part it affects will help to clarify and clear up misconceptions.

What are some of the best ways to support children and adolescents as they grapple with a diagnosis and treatment or loss?

Encourage the expression of feelings. A cancer diagnosis will likely have a significant effect on every family member, regardless of age. Most children will experience many mixed feelings, including guilt, fear, anger, anxiety, and frustration. Encourage them to share their thoughts and feelings, and normalize how confusing cancer can make people feel. Communicate that all feelings are okay. Brainstorm ideas for how you can support each other within the family: a special code for when someone needs a hug, fly feelings balloons, read books, spend special time together, establish family fun nights, etc.

Also, let children know that there are many people who care about them, like teachers, coaches, relatives, friends, and neighbors, and that they can also share feelings with these trusted adults. Seek out professional support if children appear to be acting out or are having difficulty coping, either with a school counselor or a therapist in the community who has experience working with children as well as navigating serious illnesses.

Be sure to let children help. A cancer diagnosis is a “choice-less event” and can make people of all ages feel anxious and out of control. It is important for children to feel useful when someone in their family has cancer; it will make them feel less helpless to do an age-appropriate task like bringing a glass of water or blanket over to the person. Older children may be able to help out by taking on more of the driving or assisting in meal preparation. Make sure that the requests for help are not too cumbersome and that they are balanced with time to relax or play. Having a “break” from cancer is often desperately needed!

Try to prepare children as much as possible. Children, like adults, are empowered by information. Prepare children as much as possible in advance for what they will see and experience during a family member’s cancer treatment. As cancer treatment can change someone’s physical appearance, it is best to explain what treatment will entail, including possible side effects and changes. Anticipating and preparing for something like hair loss will serve to reduce concern if and when this side effect occurs. Be sure to explain that while someone might look sick, side effects from treatment do not mean that the person is getting sicker from their cancer.

Another important time to prepare children is if the person with cancer has to go to the hospital. Spend time explaining what they will see, smell, and hear when they go to the hospital, including what the person will look like, what machines or medical equipment might be in the room and how they work, and the different hospital personnel who might visit. Outline the rules of the hospital, such as handwashing, no running, and being respectful of other patients and families visiting.

Children should be given the choice to visit the person in the hospital or not; they also might choose to go to the hospital but to stay in the lounge or lobby. If children decide that they do not want to visit, give them options for other ways that they can connect with the person in the hospital: talk to the person on the phone, send pictures, kiss the hand of someone who will be visiting so that the kiss can be “passed along,” make videos for the person, or write a card.

Finally, try to maintain stability in the family schedule. There will likely be many changes that result following a cancer diagnosis: changes in the person’s energy level and appearance, emotional changes, changes in roles, new chores around the house, hospital stays and general routine changes, and changes in people involved in care. When possible, try to keep a daily routine to establish some normalcy amidst lots of changes. Allow children to maintain their usual schedules, participating in sports, after-school activities, and seeing friends, and be sure to explain rationale for plans changing if something comes up. If consistent assistance is needed—especially with childcare—try to have the same person helping for stability. And set aside special family time where you can focus on connection, togetherness and fun!

At Supportal, we’re looking to help people turn empathy into action. Why do you think people struggle so much with that—and how important is it to give and receive support when these challenges strike?

Family and friends often don’t know what to do for or say to a loved one impacted by a cancer diagnosis. They are afraid that they will say the wrong thing or won’t know what to say, and in the process will make the person feel more upset. As a result, they end up saying or doing nothing in an effort to protect the person. While not ill-intentioned, this often makes the person you care about feel isolated and can jeopardize the strength of the relationship. In order to give support when challenges strike, friends should make sure they are checking in regularly and offering concrete help—something like “I would like to come clean your house for you. When might be a good day I could come by?

On the other side of the equation, those who are in the midst of a challenging time often have a difficult time asking for help. Many people are used to being self-sufficient and it is out of their comfort zone to lean on others. Some feel like they are imposing on their support network by asking for help. Others may feel embarrassed to ask, or don’t know what to ask for. We recommend the person appoint a trusted, reliable person to brainstorm ideas with, communicate needs to those who want to be of support, and help organize the support so it is not an additional burden on the person. Remember that giving people opportunities to help will minimize their feelings of helplessness and will allow you to spend your time and energy focusing on healing.

Can you recall any specific situations where showing up and showing support has made a real difference?

Showing up is easily the most important way to communicate care. It shows the person that he or she will not be alone even during hard and scary times. Some ways that this has made a real difference include driving a friend to chemotherapy and spending time together during the infusion; making meals that can be easily frozen and reheated; going food shopping or having groceries delivered; doing laundry that has piled up; mowing the lawn; walking the dog (especially if person is recovering from surgery); taking care of kids by babysitting, driving them to or from school or after-school activities, helping with homework, or treating them to a special excursion; giving a gift certificate for a massage; staying connected through regular emailing, texting, or calling; and allowing space for tears but also laughter—humor heals!

Remember that even if you do just one thing for a person needing support, it translates into one less thing that person needs to do.

Michelle Bronzo
 

Michelle Bronzo is an oncology clinical therapist at Life With Cancer. She is a Licensed Professional Counselor (LPC) specializing in grief and loss and has a Certification in Thanatology (CT) from the Association for Death Education and Counseling. Michelle earned a master’s degree in mental health counseling from New York University and a bachelor’s degree in psychology from Georgetown University. For more information, click here.