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There are a lot of beautiful things I remember about my Uncle Red: how handsome he was, how sweet and adventurous. He’d come in the room and lay eyes on me and say, “Hey, Beautiful.” Always, he’d call me beautiful. Always he’d hold my hand. Always, around him, I felt loved.
There are things I hate that I remember, too. How prostate cancer wrecked his body. How hard it was, he said, to sit still because the pain was unbearable. How the treatments stole his appetite, his energy. In the end, his will.
Uncle Red shared these things as document—for himself. For us who loved him and wanted to know how he was faring and what we could do to help. And, most importantly, with his doctors, who were charged with tracking his symptoms, so that they could do what they could to not only help him fight the disease, but also feel better while he was duking it out.
The latter is, perhaps, the most important, precisely because a cancer care team needs information on side effects—whether minor or severe—in order to determine whether a patient is facing more serious health problems that need medical attention. Simply put: the team can’t help you battle the side effects if it doesn’t know about them. And if you’re suffering from those side effects, it can keep your cancer treatment from going more smoothly.
What are the best practices for getting everybody on board with your symptoms? Tracking them. Like, journals, spreadsheets and all. You write down common side effects, how long they might last, how severe they get on a scale of one to five—all of it. If you’re experiencing symptoms your oncology team didn’t discuss with you, make note of those too, along with a list of your medication, vitamins and supplements. It’s important. And you stay consistent with it, because writing it all down daily (not at the end of the week, not at the end of the month when you’re guessing and trying to remember it all) keeps the record most accurate and symptoms traceable and treatable.
Of course, you have to do much more than just list your side effects; you have to tell your team about them. Some of them can be easily managed, but others just might need immediate medical attention—like difficulty breathing, fevers of 100.5 degrees or higher, increased pain, trouble swallowing, confusion, uncontrollable diarrhea, bleeding, and swelling of the arms or legs. Count on your oncology team to tell you upfront which symptoms are common and which ones may need you to hustle straight to the emergency room.
I know that when Uncle Red was telling me and the people who loved him about his symptoms, our first inclination was to tell him what to do. Like we were doctors with the best degrees Google could earn us. He knew we meant well. I’m not sure if he took any of our advice; I hope he didn’t. Because, well, we’re not doctors. We didn’t know what we were talking about or how it felt to be in his kind of pain. That was up to his oncology team—the experts—to help him work through.
Our jobs were to simply be there for my Uncle Red. To hold his hand. Tell him we loved him. To celebrate his life while he was here in the land of the living. Uncle Red died from complications with prostate cancer, but he knew—always knew—he was beautiful. And loved.
And now, do me this solid:
Med-IQ is conducting a survey and would appreciate your input. The survey, which includes additional education on this topic, will take less than 15 minutes to complete. Survey responses are anonymous and will be shared only in aggregate.
Your responses to these survey questions will provide Med-IQ with important information about your experiences with cancer symptoms, treatment-related side effects, and your care team, which will help us develop future educational initiatives for healthcare providers to improve care.
Once you’ve completed the survey, you will be asked to provide your email address if you’d like to be entered into a drawing administered by SOMA Strategies to win one of five $100 VISA gift cards. If you choose to enter, your email address will not be sold, kept, or stored; email addresses are used only to randomly draw the winners and notify them of their prize.
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I was compensated by Med-IQ through educational grants from AbbVie, Astellas, and Genentech to write about communicating symptoms and treatment side effects with the healthcare team. All opinions are my own
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Mom. NY Times bestselling author. Pop culture ninja. Unapologetic lover of shoes, bacon and babies. Nice with the verbs. Founder of the top black parenting website, MyBrownBaby.