Your child was just diagnosed with cancer, and my heart goes out to you. Diagnosis day is a day forever imprinted in your soul — “D-Day” in our house: January 6th, 1999. I’ll never forget that wash of shock, fear, and utter paralysis when our daughter’s oncologist called us at home with the news: Cecilia had leukemia.
As much as you want to crawl back under the blankets after getting that call, life in the childhood cancer world very quickly demands that you wake up, pay very close attention, and get organized as you become the unwitting advocate and gatekeeper for your child’s treatment years and follow-up care. And nobody really tells you that this is what you’ve signed up for, at least not in the medical community — they are busy saving your child’s life, after all.
After those first few days in the hospital for diagnosis, we were clearly expected to quickly get our shit together — what choice do you have as a parent of a kid with cancer? We felt the overwhelming need for help and had no clue how to ask for it or exactly what we needed help doing — besides everything.
Your child getting cancer is a pretty unexpected and heroic call to action —and I’m fairly sure you didn’t sign up for Hero Duty. I sure didn’t. Cecilia survived, thanks to an incredible medical, friend and family team. But it was a three year odyssey into hell and back. A few short months after her liberation from cancer, my incredible Dad — our hero and constant support throughout treatment — was diagnosed with esophageal cancer, and I found myself bouncing from being hero support for my daughter, to my Dad. So I know a thing or two about what it’s like to be a caregiver to someone you love. The anxiety. The fear. The omnipresent grip of despair. You feel like you have to do it all, because you are their person, or because you think you have all the current data, or because you convince yourself that if you just try a little bit harder, you can fix them. People call you heroic or say, “I could never do what you’re doing.” I don’t know about you, but I don’t recall anybody giving me a choice.
Sound familiar? Might this be you? I understand. And I learned so much from those years with my daughter, who survived, and my Dad, who died from cancer. You can do this better. Asking for help does not come naturally to most of us, even less so when you are under the intense stress of a new cancer diagnosis. How do you know what to ask for when you can’t even form a sentence?
Over time and with lots of trial and error, I learned that help comes in many forms and evolves as you find resources, develop trust with certain new and old friends and most importantly, figure out what you need. Because you already are a hero. And even heroes need support, a squad, back-up.
This article is meant to provide some out-of-the box thinking about what to ask for and how to develop your needs list and hero-support team as a caregiver of a loved one with cancer. Many of the following tactics that we used during treatment I also utilized years later when a friend or family member had their own crisis. I can tell you from both the giving and receiving ends, they work.
Friends and Family
When your loved one is diagnosed with cancer, your friends and family are in despair too. Grandparents suffer, close friends and their children do as well. Sometimes their fear results in silence or a seeming absence from your life as they navigate their own feelings and process their own fears. This can be hard to witness in people you love, and that you thought loved you back. Try to remember that the “C” word freaks everybody out, and friends and family don’t get what you are going through. How could they? Instead of suffering in silence, empower them. Tell them what you need! In the first week or two, let one person you love and trust be your point person and have them organize life for you. Remember this — people LOVE a job and generally want to help, so here’s what to ask for.
Take a picture of this list, and text it to your point person.
Groceries & Other errands
Set up a Google Doc and let a friend or family member send it out once or twice a week. Remember to add all those little errands that need to be done — pick up the dry cleaning, drop off a package, etc.
People will sometimes offer to pay for those groceries and errands. Let them and pay it forward later.
Assign one friend or family member to set up your needs on a site like mealtrain.com, where you can specify your families wishes for meals and the appropriate days and times for delivery.
Set up a very large cooler outside your front door for deliveries. You may want to chat, you may not, or you simply might be at the hospital. A cooler gives you options. Along with the cooler, put a sign over the doorbell that says “nap time!” to preserve the quiet.
Everybody wants an update, and talking on the phone or sharing on social media might be great for you, or just way too much to handle during treatment, especially in the beginning weeks. Let a friend, family member, or beloved teenager in the neighborhood set up a webpage for your loved one’s treatment with pictures and a general description of the current situation. Then, either you can go into the site when you want to share news, or you can email or text your point person what you want posted.
You can set up a site in a variety of ways from creating a Facebook page to utilizing the popular Caringbridge website at www.caringbridge.org.
When you are in-patient, ask for friends and family to deliver your favorite take-out or, if your loved one is stable, ask them to bring a picnic and their family to the hospital for a date in the hallway or lobby! Check with your hospital regarding their particular rules for hanging out.
Visits from friends broke up our day beautifully when our daughter was in-patient, as well as my Daddy. Having a visit to look forward to and enjoying a meal together either outside or in a quiet hospital corner (not the patient’s room) is an awesome change of scene and quite fun for everybody! And, it gives you the chance to take a walk outside and breathe, cry, regroup and come back a little restored for the rest of the hospital visit. Invite those friends that you know will “bring the party” in terms of attitude and fun.
In the midst of this marathon, what would be a treat just for you? Massages at home? Mani-Pedi coupon? Free babysitting? Now, let the world know. Or one good friend that can spread the word. As important as it is to know what you do need help with, it’s equally important to know what you don’t need. Well intentioned people, and some not-well-intentioned folks, can really mess with your mojo. So grab some coffee, find a cozy chair, and jot down your personal needs-list. Here’s some ideas to get you going from our personal list:
Ask for what you DON’T need
*Please don’t refer to my child, parent, partner as ‘sick’. Their cancer is in remission and they are ‘in treatment’
*Please come to our home when healthy. If you are sick, our person will get sicker and likely end up hospitalized. Think COVID-protection quarantine.
*When you come to our house, please take your shoes off by the door and wash up (sounds strangely normal in COVID times!)
*Never, ever say, “I don’t know how you do it.” Neither do we. Instead say: “You are doing an AMAZING job. Would you like a latte from Peets today?”
*Never, ever say, “I couldn’t do it” (referring to a poke, hospital stay or cancer in general). And you think we can? Instead say: “You are a Warrior Goddess/God — I’ve got your back!”
*Never, ever say; “God has a special plan for (fill-in-the-blank name)”. God (or whomever/whatever you believe in), didn’t create cancer and give it to my child. Or yours. God is hope and light and love. That’s it. My friend reminded me that I sent out an email early on about what not to do and say right after Cecilia was diagnosed and that it really helped our friend group immensely. See?! Don’t be afraid. Help people help you.
Cancer is scary. And sadly, it scares some people away when you need them the most. If you’ve done your best to be open to help, and are specific about what you need and don’t need, and a friend or family member is still MIA, then it might be time to part ways. You need your tribe 100%, for better or worse.
That should get you started, and if you remember nothing else from this article, please simply remember to say YES. Allow people to come into your life and take everybody up on any offer of help. You will be lifted up and stronger for the journey.
Remember, you don’t have to do it all and be the hero. You already are.