Cancer is always a beastly diagnosis and often a lengthy treatment, all for the hopeful goal of an eventual cure. It isn’t typically something that’s a quick fix, a one-and-done, although we often wish that it were so. There are months or years of treatment, and an even longer follow up schedule as you are checked and retested to make sure the cancer is still gone. And for many of us, patients and caregivers alike, when we fully understand the length of treatment, that’s when it starts to be overwhelming – that “holy crap how am I going to get to the finish line?” feeling. We long for the easy diagnosis, the fast cure so we can move on and get back to our lives. But that’s not life in the cancer world, is it? While it’s tempting, fighting and mourning for your old life is futile as that will never exist again. Carving out your daily path, finding any sense of normalcy and joy in the life you have right now, depends on inventing your new normal.
When our three and a half year old little girl was diagnosed with ALL we had all of those feelings. Overwhelm. Denial. Despair at the three years of treatment and five years of follow up ahead of us. It just seemed… impossible. Would we make it, literally, and emotionally? Would her little body be able to handle all those drugs? Where would we find the stamina and the ability to rally our family for this long haul? And most of all, would it cure her? I spiraled for a while (a long while) in my puddle of anxiety and fear for my child. And then I looked at my little family and realized something needed to change. For me, it started to click when I accepted our circumstances and surrendered to the situation at hand. She had cancer. It was 3 years of daily treatment. Prognosis, while good, was no guarantee.
Surrender and acceptance.
Now, I realize that might sound trite at best, a little woo-woo at worst. But when we stop rebelling against diagnosis and treatment, we have the space to find a new normal by creating routines and boundaries that work for life right now. We have the emotional space to take action that actually matters! I watched countless teen and adult cancer patients do the same, with remarkable results. They were my role models, my heroes. With their inspiration and help from my therapist, I came up with a plan to establish our family’s New Normal.
Setting Boundaries ~ your first step
Paramount in creating a new way of living with cancer is establishing personal boundaries around your health as well as boundaries around the way that your medical team, family, and friends treat you with words and actions. This applies to patients, caregivers, and certainly small children who don’t always have a voice. My story comes from that point-of-view as that was our journey with our daughter. But our experience is true for any age as I came to learn when I became caregiver for my Dad during his esophageal cancer treatment and passing from the disease.
“She doesn’t look sick…” a phrase said far too often, in FRONT of our daughter, during our cancer years. Yes, cancer sucks, but when a patient is in the midst of treatment, they can often be in clinical remission since initial rounds knock cancer down and subsequent years keep it that way. Thus, you or your child/parent/friend is not sick, they are in treatment. That’s a huge distinction. And if you are the patient, it can be very empowering to choose how you language cancer while you wait for remission, or for the tumor to shrink. Are you sick? Or are you in treatment? It is totally up to you to experiment with the language of your cancer story and once that’s clear for you, make it clear to your medical team, family, and friends how you want them to talk to you at appointments, playdates, family events, school and just everyday life.
Because words matter. They lift us up, or destroy us in a second, especially when we are vulnerable. Empowering yourself, your child, your friend or family member to feel strong – strong enough to fight this beast, strong enough to build up their ANC, strong enough to be the feisty person that’s going to fight – is important. If you are a parent of a kid with cancer, it’s your job. If we constantly hear ‘you’re sick and weak, don’t do this or that’, we start to believe it. Countless times at the hospital we witnessed a child lose their power because of their own parents’ fear and paralysis. Caregivers, don’t be that person.
As you get past the flurry of a new diagnosis and settle into a routine, letting friends and family know what you need in terms of support and continuing to set boundaries remains an on-going conversation. And they need to understand how serious it is if you or the person you are caring for gets even a simple cold or fever. It’s often said that it’s not cancer that kills, but the infections that can happen with a low ANC as chemo tanks your immune system while defeating cancer. Tricky stuff.
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. But since COVID, I feel like it’s a bit easier to explain! We all now know how to mask up and sanitize, but they will still need your guidance. So will all the new friends and families you meet as we, hopefully, return to a more normal post-COVID life. As you re-enter school, work, social life, set those boundaries, keep talking and be clear about what you need in order to have fun and live more freely during this chapter of your life.
Toolbox Tip: When people are coming over, or you’re scheduled to be somewhere, never be shy about inquiring into everyone’s health. If there’s any mention of sniffles or worse, politely decline – you love them and will see them another time. We all know that infections and unscheduled inpatient stays are to be avoided as they rank a close second to relapse as a threat. So take control and avoid them as best you can. If you are a parent, I strongly suggest having these conversations away from your child. This is adult-talk, as hearing about relapse and potential illness could make your child feel like a victim or perpetual patient at best, and constantly worry at worst.
Finding Your Joy
Finding a positive attitude during cancer treatment may sound daunting. And it is the number one thing you can do to create a new sense of long-term ‘normal’. If you are caring for a child and they are young, they don’t realize the mortality issues surrounding their care, which is a blessing. Keep it that way by carefully creating your new way of life, boundaries, and routines, empowering kids by giving them tricks for handling what scares them the most. Then live your life to the fullest. If you are a patient, find what brings you joy and do it every single day. Take some time to journal about what makes you happy – a great cup of tea, a walk, yoga, gaming with a friend – and put it on your schedule every day. Intentionally pull your focus to the good you do have in your life, right now.
Toolbox Tip: A wise friend advised me to start a nightly gratitude journal during treatment, where I was to jot down five good things that happened that day. “Are you KIDDING me?” was what I thought, but this simple act was a total game-changer. Encouraging your mind to see the good in life shapes how you see the world and ends your day with good vibes. 26 years later, I’m still doing my nightly gratitude journal. It truly saved me during those years and changed who I was, allowing me to become a person again. Give it a try!
The idea of applying a positive attitude towards life, and its impact on healing, is well researched: “We have this advanced nervous system that we regulate through the choices we make in our lives…what we think, what we feel, what we believe and specifically the emotions that we choose to respond to what life brings to our doorstep,” HEAL, Greg Braden.
Establishing your New Normal is a very personal quest that requires a team effort. If you’re a caregiver, ask what your family or friends need and want and help them make it happen. If you are in treatment, take the time to figure out what you need in this chapter of your life, and who is out there to help you. It might be your family, but you may want or need to create your team from friends, colleagues and neighbors. Now is the time to step up and ask for help as you dive in and create what you want your life to look like during treatment and well beyond.
Join the Conversation!
Leave a comment below. Remember to keep it positive!
Thank you! This is very useful information! I hope your daughter is well.
You are so welcome! She’s 26 now and doing fabulous! All the best to you and yours.
Great advice!!! From
one mom to another: I PRAY YOUR DAUGHTER IS WELL♥️
Thank you so much! I’m glad it resonated. Yes, she is 26 and doing fabulous!