What to Say When You Don’t Know What to Say
How and What to Talk About With A Parent of A Child With Cancer
I found myself talking and thinking about the language we use to talk about cancer lately. Maybe it’s because I’m writing this blog so it is on my brain more than usual. Maybe because I was involved in one of the most awkward conversations about my daughter’s cancer last week and it is still bugging me. However, this issue comes up a lot. People don’t know what to say so they either say nothing or they say something casually that is well-intended but feels more like a slap to my heart. Then I spend the next few hours to weeks, dissecting why it bothered me so much and trying to convince myself to not be upset about it anymore. So it’s no wonder that people struggle so much when they don’t know what to say or how to say it. As I was researching what information is out there about talking to a family about cancer, I found two articles from Cancer.Net that really made me think about the language I use when I talk about cancer and made me reconsider if I find them appropriate.
I have had a lot of thoughts about how I talk about my daughter’s cancer and how I worded it as I created the Child Cancer Mom website. My aim has always been to describe my child and other children as being children with cancer. This order is more in tune with my thoughts that children are foremost children and their cancer diagnosis is something they are going through. I never want cancer to be the only label they have. When it comes to fighting cancer or battling cancer, my outlook changes based on the situation. I like thinking of my daughter as a warrior against her cancer. Although I’m not a fan of always referring to it as a battle, her personal Instagram handle states it is her versus her cancer, like in “Mortal Combat” or “Scott Pilgrim vs The World.” However, continuing this metaphor creates an issue when it comes to when someone dies as a result of cancer. Often it is referred to as “losing their battle with cancer” which can imply that someone didn’t try hard enough or wasn’t strong enough to overcome their cancer. Which isn’t the case. I like the phrase “gained their wings.” To me, it is more spiritual and the symbol of having another angel to look after us on Earth gives me a sense of peace. There are differing opinions though. Where some may find being a warrior empowering others may struggle with its implications. It is no wonder, with the stigma surrounding cancer and what words to use, people have so many concerns on how to discuss cancer with their friends and family.
I’ve heard many times since my daughter’s diagnosis that a friend or family member wanted to reach out to me but was unsure of what to say. It can be a dilemma as someone wants to check on you and your family but also not to say something that may upset you. I have been in both situations. I’ve had family members ask me how long my child had to live shortly after Pey was diagnosed. It took every fiber of my being to calmly say that I didn’t ask because we obviously were going to undergo treatment to prevent that situation. I’ve had parents at my other daughter’s school not even introduce themselves and ask me to confirm if I’m my daughter’s mother then tell me they heard about Pey’s cancer. They couldn’t think of what to say so they kept summarizing what my mother-in-law had told them. I wish they could have done better as I suddenly felt like I was an attraction at a carnival, something to be semi-quietly discussed as I stood behind them. So I get it when family and friends don’t want to reach out in fear of putting their foot in their mouth or upsetting you. It’s important to understand that words are important and should be chosen carefully. However, friends and family should reach out if you're ok with it. I loved when friends sent me text messages just to say they were thinking of Pey and me and that there was no pressure to text them back.
So if you are wondering what to say when you reach out, here are some tips:
Ask if it is ok to talk about their child’s cancer. This gives your friend or family member the ability to decide if they want to talk about it and how much they want to share with you.
Offer practical support. Offer to send the parent gift cards for food or a store. Ask if they need anything to keep busy or relax like adult coloring books or books to read. I loved when my sister and my best friend would recommend books on a digital library app or movies on a streaming service. When Pey was sleeping, I would read or watch what they recommended. Suggesting a specific way you can help is way better than saying “let me know if you need anything.” I never knew who to take seriously when this was offered.
Talk about what you would normally talk about. This helps your friend or family member feel still connected to things outside of their child’s diagnosis. It is easy for their life to revolve around their child so having these moments of normalcy is refreshing.
Choose your words carefully. Say things like: I’m thinking of you, I’m here to listen if you need to talk, and I’m sorry that this is happening to your family. Avoid saying: I’m sure everything will be ok, don’t worry, and I know what you should do. Phrases like that avoid and dismiss what your friend or family member is saying.
If you still find yourself unsure of what to say, try to put yourself in your friend’s or family member’s place. Think of a time when you were stressed, fearful, or overwhelmed and what helped you feel supported during that time. If you are super stuck, it wouldn't hurt to say that you don’t know what to say but you are available to listen or can help provide meals to take a break from cooking or ordering cafeteria food. I enjoyed my old coworkers coming by our room and asking about Pey’s big sister, where we moved to, if I liked working in the clinic, and just catching up. Once we got over the elephant in the room, I physically noticed that they would seek me out instead of avoiding me in the hallways. It was nice and I appreciated it so much.
If you have any other tips for friends or family members on how they can talk to a parent of a child with cancer, comment below.
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Resources:
Cancer.Net- “Talking with Someone Who Has Cancer”
Cancer.Net- “Choosing Your Words Wisely: Imagery, Metaphors, and Cancer” by Diane Blum, MSW, FASCO
Cancer.Net- “How to Talk About Cancer With Someone Who Has It” by Jyoti Patel, MD, FASCO
