In the summer of 2014, after a glorious week spent boating, hiking and exploring the sunset orange cliffs and emerald waters of Lake Powell, I returned home completely unaware of just how much my life was going to change in the matter of a few weeks.
A month after our Lake Powell adventure, Bryan, my best friend of 17 years, told me he had cancer. Not only that, it was Stage 4 Melanoma. A mere week after this crushing news, Bryan was rushed into emergency surgery to remove the golf ball sized lesion that was pressing against his spine, threatening to paralyze him.
I can say without a doubt that being an adolescent and young adult (AYA) cancer caregiver is one of the hardest things you will ever do. It is physically, emotionally and mentally exhausting; but none of that compares to what your loved one is undergoing with their cancer treatment. Seeing them endure unspeakable procedures, endless tests and suffer unyielding pain is almost physically painful for us as caregivers. It is the worst feeling in the world to see someone you love face such a horrific disease.
In helping my best friend, I learned more about cancer than I ever wanted to; but I also learned about humility, the beauty of human resilience, the difference a random act of kindness can make, and most importantly, I learned what it means to truly live every single day. Here are five tips to help you navigate being a caregiver:
- Take things day by day. This may sound like pretty basic advice, but there were many times I used this phrase as a lifeline. If I could make it through today and whatever was thrown my way, it was deemed a success. End of story. It’s okay to not give a fig about what is going on tomorrow. Trust me, you’ll get through it tomorrow.
- Build great memories – Find something your loved one wants to do and make memories that don’t include cancer. It doesn’t matter if you’re paddle boarding on the shores of your favorite lake, hiking Arches national park in Moab, or curling up with a bowl of ice cream and spending the evening talking about everything under the sun. Take every opportunity you have to create new memories. It is the best time you will ever spend.
- Start a digital phone tree – Following a cancer diagnosis, there is a large network of people who will want updates on how treatment is going. Ask your loved one if you can begin a group text message to keep everyone informed about the high level information; such as when your loved one has a chemo/infusion treatment scheduled, or perhaps when they have a big scan coming up. If you can text everyone at one time, it will buoy the entire group and take the pressure off of your loved one to try and keep everyone in the loop of what’s going on. It’s also a wonderful opportunity for you to encourage friends and family to text a kind word or two to your loved one.
- Tap into your resources. When people ask what they can do; delegate, delegate, delegate! Give them specific tasks they can complete to help your loved one. As a caregiver, friends and family are naturally looking to you for guidance. Use this as an opportunity to ask friends and family to drop off dinner, or pick up grocery items on your loved one’s behalf. This is incredibly important…people WANT to help, but you need to tell them what needs doing.
- Seek out happiness. And find more of it. If it’s a diet coke in the morning, taking a yoga class with your gal pals, or getting lost in a bookstore; find something that makes you happy daily. Take ten minutes for yourself, even if it is just to breathe, and I promise, it will make you a better caregiver.
It is my sincerest hope that these tips help you as you navigate your caregiver role. There will be times you will wonder how you’ll get through this. For those times, please use tip #1 as your own lifeline and know your loved one couldn’t be in better hands. If you need anything, please don’t hesitate to reach out to us. HI-AYA was established to help you navigate the AYA cancer world, so please, let us help. You can find more information here: www.intermountainhealthcare.org/HI-AYA.
What is HI-AYA?
The Huntsman-Intermountain Adolescent and Young Adult Cancer Care Program is a collaboration between Huntsman Cancer Institute and Intermountain Healthcare to better meet the needs of adolescent and young adult (AYA) patients. The patient navigator, Sara Salmon, is a trained health educator who is there to talk one-on-one about your unique situation. She can point you to resources and information to get past obstacles in life and healthcare.
If you have questions about fertility, employment, education, health insurance, speaking with your family, and more, please reach out on the “How to Get Started” page: www.intermountainhealthcare.org/HI-AYA