By: Skyler Johnson
The Brain Tumor Infocon was an event that took place this past week, via Zoom because of the pandemic. The event was not for cancer patients themselves but for those that cared for them. They gave four talks on four separate days, each regarding a different topic. I attended the workshop focusing on children and young adults. All different types of people attended, from parents caring for children to friends caring for friends. But they came for the same reason, to try and gain advice towards dealing with cancer patients. And hopefully they left gaining more information then they had entered with. Here’s what I learned from the event:
Brain Cancer Changes Who a Person is
This must be terrifying to go through, but it does make sense. After all, the brain is where a person’s thoughts, feelings, and emotions are stored, and cancer destroys that. When a person has cancer you have to see them change. There’s not much anyone can do about it, there’s no way to prevent it, but it is something that happens nonetheless.
Don’t Be Afraid to Say “Cancer”
For a person with cancer, it can be incredibly isolating when their caregiver doesn’t use the actual word. For children, it can be hard to understand what’s wrong with them if they don’t know what they’re going through if they don’t have the actual term to define it. It’s the same with emotions. Caregivers shouldn’t be afraid to show emotions just because they don’t want to upset those they’re caring for. It’s another thing that can make people feel very alone.
The Question Jar
The presenter recommended a question jar for child patients who may be shy about asking questions regarding their cancer. The caregiver, a parent, would leave the jar in a heavily trafficked part of the house, like a kitchen or living room, and the child can put questions in the jar whenever they’d like. The caregiver would answer their questions periodically, not directly after the child put the concern in. You wouldn’t want them to know you’re keeping track.
Feel Free to Take Time for Yourself
Having to take care of a cancer patient can be a daunting task, and one thing that was heavily encouraged was having caregivers taking time for themselves. They can’t be there for another person if they can’t be there for themselves. Exercise. Watch TV. Walk the dog. Anything that’ll help calm.
Everyone has a Different Definition of Caring
This is the first lesson I learned, and the most important. The presenter asked the group how they defined caring, which is not something I’d thought about previously. Several of the attendees answered, each in different ways. To some people, caring meant what caring means to most people: helping someone else through their day, making sure they’re content. If I answered the question I might’ve used an anecdote. But for one person it meant “loving and hurting,” which is, I can imagine, the most accurate. Caring can be painful. Caring can be suffering. Because you have to watch them fall apart, and get emotional in front of them, and despite all the advice people may give you, while caregiving will always be loving, it will also be hurting.