There’s one thing to remember while taking care of a loved one with cancer: yourself.
This is easier said than done when your own well-being is the last thing on your mind, especially if you’re the sole caregiver of someone with cancer.
It has been eight years, and I will always remember the day my 5-year-old daughter was diagnosed with acute lymphoblastic leukemia like it was just minutes ago.
I was finishing up the day at work after bringing Ella to her pediatrician for symptoms of tiredness, and I got the call from her doctor with the results of her bloodwork. We were driving to Boston Children’s Hospital within the hour, where we stayed for over three months before Ella was then treated at Dana-Farber Cancer Institute.
Ella had many complications from her chemotherapy treatments in the hospital and she was admitted to the intensive care unit twice. There were multiple stays in the hospital during that time, visits every week to Boston, complications that left Ella extremely weak and unable to walk for a long period of time. She had bone weakness from the steroid treatments that led to numerous bone fractures and breaks.
The years were difficult, but we also had tremendous joy that still brings tears to my eyes. Ella is now 13. She dances. She jumps on a trampoline. She is happy. There is nothing more I could want.
But in looking back, and ahead, I realize how much of a toll caring for another in that intense way takes on the body of the caregiver — me. And writing this now, I’m thinking of all the present caregivers out there — you.
I’m writing this for you, hoping that it’s the nudge you need to stop and think about the importance of caring for yourself during a time when the last person you’re thinking of is you.
When Ella was in treatment and I was taking care of her, I didn’t go to the doctor for myself once. I hurt my back carrying my daughter for so long when she was too weak to walk and continued to do it when she had fractures or breaks. This caused irreparable disc issues in my back, requiring costly medical treatments.
I never went to the dentist, even though before my daughter was diagnosed, I went to the dentist every six months and my teeth were perfect. Three years went by and I finally went to the dentist. I learned that the intense stress I had over the years caused an acid build-up that I didn’t even notice, which essentially destroyed the enamel on my teeth. Now my teeth are brittle, cracking, painful, and need to be replaced, which is an unbelievably expensive procedure.
I stopped seeing my therapist. I realize now all of the crazy things that PTSD does to the brain. My therapist is helping me work through it all, but if I had seen someone on occasion when my daughter was going through treatment, it could have really helped me manage the intense fear and stress, instead of bottling it up in an unhealthy way.
I remember feeling guilty about it – how could I go to the dentist, or my therapist, when my daughter was facing life and death consequences every day?
Yet as hard as everything was, especially being a single parent, I could have squeezed in time for some doctor appointments. I know now that taking care of your child is taking care of yourself.
As a caregiver, you also have to take care of the financial consequences of having a child with cancer. You can’t do that through self-neglect, which will only result in more medical expenses and debt.
You also don’t have to do it alone. Family Reach, for instance, was so helpful during the time Ella was in treatment. I benefited from financial support to help pay rent and cover costs associated with her treatment because I was unable to work for so long.
If you take anything from this, please at least keep up with regularly scheduled annual exams. Go to the doctor if you have symptoms you’re worried about, especially because chances are they are related to stress and there are so many ways your doctor can help to relieve those symptoms.
Taking care of yourself will lead to a healthier you — both while caring for your loved one and after.
Larissa is the mom of Ella, a pediatric cancer survivor, and she received support from Family Reach in 2015 when Ella was going through treatment. She graciously shares her caregiver perspective and experience with others in hopes that it will make their journeys a little easier to navigate.
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