Creating Routines and Boundaries
Cancer sucks for lots of reasons, not the least of which is the length of treatment – it sometimes just feels endless . With cancer, it’s not like you can simply get a scary diagnosis, process those feelings, kick cancer’s butt and move on quickly. There’s the long diagnosis and staging process, then treatment, sometimes surgery and radiation. And even when treatment is done, there remain long months or years of checking to make sure the cancer stays away. This is especially true if you are a kid fighting the battle as typical childhood cancer protocols are long ordeals with lengthy treatments, extended follow-up and years of after-care.
I know. Our daughter Cecilia was dx with ALL at age 3, which involved a two and a half year marathon of treatment and years of follow-up. Now 26, conversations about treatment still occur with regular doctors as they learn her history. That’s a damn long time. Following her treatment, my Dad was hit with esophageal cancer and I, along with my Mom, became primary caregivers. Both of these experiences have given me some major perspective on the importance of creating some sense of normalcy amidst the crazy, long journey of cancer treatment.
Once the initial shock and first phase of treatment is behind you, you face forward and think, “Holy crap how am I going to get to the finish line?” That’s a big question. For us, it started to click when we accepted our circumstance and surrendered to the reality of the situation at hand. We found that once we stopped rebelling against diagnosis, we had the space to find our new normal by creating routines and boundaries that worked for us and our loved one.
Establishing New Boundaries:
From years of observing the interactions between my daughter, dad and their families, friends and medical team, I learned that it’s paramount for patients and/or their caregivers to establish personal boundaries around the way they are treated with both words and actions. Here’s a great example from real life: “She doesn’t look sick…” a phrase spoken far too often, in FRONT of our daughter, during cancer years. Yes, cancer is scary, but usually a child with leukemia is in clinical remission quickly, since initial phases of treatment knock cancer down and subsequent years keep it that way. Therefore, a cancer patient is not sick, they are in treatment. That’s more than simple semantics; it’s a huge distinction from a mental health perspective.
It’s up to you to make it clear to your medical team, family, and friends how you want them to talk about treatment at appointments, socially, and school. Why? Because words matter. They can lift us up, and destroy us in a second, especially when we are vulnerable. As an educator and mama of three, I’ve seen this happen as children understand more than we realize, and will rise up or wilt under the seemingly innocent words and gestures of an adult. Empowering your child to feel strong, strong enough to fight this beast, strong enough to build up their ANC, strong enough to be the feisty kid that’s going to fight, is your job. If they constantly hear ‘you’re sick and weak’, they’ll start to believe it. Countless times at the hospital we witnessed a child lose their power because of their own parents’ fear and paralysis.
As you get past the flurry of a new diagnosis and settle into routine, letting friends and family know what you need in terms of support and boundary setting remains an on-going conversation. For instance, they need to understand how serious it is if your child gets even something as simple as a cold or fever. Finding a balance with your friends and family treating you as normally as possible while being as inwardly cautious as possible, is a tall order. They will need your guidance, so here’s some ideas to help them and you:
*Always inquire about friends and families’ health when they are coming over (as you already do during COVID times), and don’t hesitate to reschedule if anybody has the sniffles or worse.
*Declare what you need in a friends and family email, Facebook or CaringBridge. Every few months, we sent a detailed update with pictures and spelled out exactly what we needed from the people we love. Friends and family love to help and to get guidance on what you actually need and want. Help them help you.
Establishing New Routines
Depending on your child’s age, or your family members’ life situation, establishing new routines can mean a variety of things. But if the treatment is lengthy, as they usually are, finding a way to make this new situation as ‘normal’ as possible is survival for your mental and physical well-being. We are not meant to live in fight-or-flight mode for sustained periods of time. Pills need to be taken, shots endured, and a medical schedule must be followed. Making that as ho-hum as possible greatly helps your child shrug their shoulders and surrender into the routine vs fighting it. And if your child is happy, you are happy.
In order to establish your new routines, involve your child in the creation of traditions surrounding daily pills and shots that simply have to happen and sprinkle in some joy along the way to normalize the process. Here’s a story that might help you craft your own new normal.
At the end of induction, our oncology nurse asked Cecilia if she wanted to come in for her weekly labs and chemo shot, or have her parents learn to do them at home. “At HOME!” she said with a smile. Dear Lord….I think her nurse knew that being at home was probably the healthier option for Cecilia and nudged her towards that choice. You really can’t say ‘no, honey i’m not down for that’ but we sure wanted to for a hot second.
However, that nudge from our nurse sent us down a very empowering path. Bringing home a load of containers labeled biohazard and being trained to forcefully impale our child with chemo in her thigh was…daunting. You can’t give her a tiny bit too much. Or too little! And her thigh has to be cold enough to numb the pain. And be SURE nobody in the house – human or animal – touches the chemo. It was a lot to process. But slowly and surely, we got used to it and with Cecilia’s input (crucial) created an awesome routine that included Tacos, Dragon Tales with dinner and a sugar free popsicle. Cecilia knew that the shot had to happen before the popsicle, so when she was ready, she would sit on my lap with the cold spray and ice pack, focus on Dragon Tales , count to three and do her lamaze/”whale breath” exhale and my husband Arne would do the deed.
I swear to you, not a single tear was shed in all those years. Why? Because although we had boundaries, like donuts were not going to be a dessert option, and whining was not allowed if she wanted Dragon Tales with dinner, she created the rules, and fun, surrounding the weekly shot ~ what was on the menu, the treasured show she was allowed to watch, dessert, and when the shot would happen. And in her eyes, the good far outweighed the bad.
Give it a whirl.
New routines to help you through your journey should also include ways to empower your child to handle their regular treatment. Shots are always scary – even for adults! They look scary, they kinda hurt and if we tense up it really is so much worse. And pills! Swallowing them can be very hard for a child. Empower your child during this time by giving them tricks for handling what scares them the most. For example, If taking pills, or the taste of pills, stresses out your child, a stack of 6mp tablets fits perfectly into an empty gel cap that you can get at any pharmacy. These gel caps mask the bitterness and often can fit more than one pill- voila!
Positude = Positive + Attitude
More than any new boundary you set or routine you establish, having a positive attitude (or a “Positude” as it was known in our house) is the number one thing you can do to create a new sense of ‘normal’ for the journey. If your child is young enough, they likely won’t realize the mortality issues surrounding their care, which is a blessing. Keep it that way by intentionally crafting your new way of life, boundaries and routines.
We were incredibly lucky to have a caregiver at the time of diagnosis named Joni. Joni is one of those incredibly smart, kind, and super intuitive people who connects with young children. Right after Cecilia was diagnosed, we watched Joni work her magic as she made Cecilia laugh, seamlessly steered her clear of germs and sneezes at the park, and gave her the gift of empowerment.
One day during her pre-nap story time, Joni introduced the idea of an animal spirit to Cecilia. They had read about them in a book and Cecilia was mesmerized by the idea that we all have an animal spirit inside, protecting and defending us. Joni asked Cecilia what animal spirit was inside of her, protecting her from cancer? “Dinosaurs!”, she declared! Joni went on to guide Cecilia over the next weeks and months to define exactly which kind of dinosaurs were killing different ‘bad cells’ in her body and which were ‘on patrol’.
The idea of applying a positive attitude towards life, and its impact on healing, is well researched. Cecilia’s dinosaurs were the beginning of our new normal, our Positude towards life, as they gave Cecilia the desire and power to fight by changing her mindset about her experience. Rather than seeing cancer with fear, she was hell-bent on kicking cancer’s butt because she had a way to control that part of her world. Friends and family slowly helped her build a toy menagerie of dinos and visualising them fighting for her, and acting that out through play, turned our little girl into one positive warrior.
What new routines and boundaries can you establish now that will empower you and your child to be as strong as you can be? Lean into the Positude as you find your way.
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©2020 Laura DeKraker Lang-Ree. All rights reserved.
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://elephantsandtea.cdn-pi.com/contact/submissions/.