This is a sponsored post. 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.
My father and I had a long history of arguing. Both stubborn to a fault, we would spar over everything from politics to the names of restaurants we had visited when I was a kid. And, it was impossible to win an argument with that man because he had the mind of an elephant. My dad remembered everything. He was the kind of person who could not only remember events with shocking clarity but also the days of the week and, in some instances, the exact moment that a family event had occurred.
Frankly, it was maddening.
As I grew up, it was quickly apparent that the apple didn’t fall far from the tree. These days, I am the historian for our family. I’m the one who remembers what I was wearing the day our son puked the entire way home on a flight from Disney and I’m the one who knows the story behind every Christmas ornament on our tree. I am the Rememberer of The Things for my family.
Frankly, it’s exhausting.
The irony of becoming a writer isn’t lost on me, either: writers are literally paid to remember the details of experiences in a universal way. In short: we writers remember all the things so that you, the reader, can find a commonality in our words.
But, when cancer comes to your family, all bets are off and your memory suddenly becomes a bowl full of gelatinous mush.
When my father was diagnosed with stage 4 esophageal cancer in January 2012, his life became a blur of tests, appointments, follow-ups and second opinions. Even with my father’s ability to remember every minute detail of my childhood (and his), the overwhelming and crushing realities of a terminal illness made remembering the details of his medical history taxing.
As my dad proceeded through his medical plan, it quickly became apparent that a chemotherapy regimen causes side effects and symptoms that are unexpected and frequent. With every infusion, it seemed like my father had a new side effect. With every medication adjustment, my father would spend the first few days trying to decide if his symptomswere from the new medication or a complication from his advanced cancer.
And it seemed everyone had an opinion or a suggestion about how to handle post chemo nausea or the side effects from a pain medication. While his friends and our family meant well, the fact is that they didn’t have access to my father’s medical records or medical degrees behind their names. Though I’m a registered nurse, even I wasn’t able to offer the proper advice to my dad when it came to his medical emergencies or the times when his symptoms needed medical attention.
We learned quickly to leave his care up to his trained medical team. Because, while some of his side effects were minor, there were times when his symptoms were a sign of more serious problems that needed immediate medical attention. In one instance, during a visit to our home for a holiday weekend, my Dad became incredibly weak. We called his oncologist immediately and after an evaluation at the hospital, it became clear that he needed a blood transfusion emergently. Every time I think about that visit to the hospital, I am grateful we trusted his doctors to guide us.
If you are currently in the thick of a cancer diagnosis or caring for a loved one with cancer, ask questions of your medical team, even if they seem silly or inconsequential. Ask the care team about common side effects, how long they might last, how severe they could be, and when to call for help. Your healthcare provider may prescribe medications to help prevent or lessen certain side effects. Better control of side effects can help cancer treatment go more smoothly.
And if you are experiencing other side effects or potential side effects that are considered more rare or weren’t even necessarily discussed with you, be sure to report these, too. The oncology team often discusses the more common side effects and symptoms but you might be experiencing additional symptoms that are related to the treatment that are critically important to report as well. Don’t make any medical judgments yourself as to whether they are or aren’t significant. Remember, there’s a reason your oncologist has that giant degree framed in his office.
So, what’s the best way to manage all of the information that you or your loved one will have to convey to the doctor about a cancer medical plan?
Keeping track of symptoms and side effects can help to better communicate with the care team and to receive individualized, tailored care. Tools are available online to help with tracking. The American Cancer Society, for example, offers the following:
Side effects worksheets, which allow you to note side effects of surgery, chemotherapy or radiation. Include when they are occurring and on a scale of 1-5 how severe they are. Do this daily. Do not think that you will remember and retrospectively record this information at the end of the week or when you have more time. Factor this activity into your daily activity and do it religiously.
A pain diary, which includes a scale for rating pain and noting where you feel it, what it feels like, and what makes it better or worse
A list of medicines, which allows you to track your medicines, vitamins, and supplements. And do not take any additional medicines, vitamins or supplements without your doctor’s approval. Sometimes patients assume that there is no harm in over-the-counter products but there can be. So full disclosure before you start your cancer treatments is key as well as telling your doctor that you would like to add supplements or other medicines to your routine care before ever beginning them on your own.
Although some side effects can be easily managed, others may need medical attention pronto. Some examples of serious side effects that require immediate care or an emergency room visit are:
- A fever of 100.5°F or higher
- Difficulty breathing
- Increased pain
- Trouble swallowing
- Uncontrollable diarrhea
- Swelling in the legs or arms
Ask your healthcare team to describe common side effects or symptoms and explain which ones may need medical attention right away. Questions to ask your healthcare provider include:
- Which side effects should I call you for?
- When should I call 911 or go to the emergency room?
- What number should I call after business hours?
Though my dad has been gone for seven years, I haven’t forgotten the anguish of those first few months as we came to terms with his devastating diagnosis. To see him struggling to manage his symptoms and to find his footing was hard for me, not only as a daughter but as a nurse. I am beyond grateful that he had a team of medical professionals who helped us do the heavy lifting of remembering the small details of his care.
These days, I still smile when I hear the opening credits to the game show “Jeopardy.” My Dad and I almost never missed an episode of our favorite quiz show when I was growing up and I delighted in answering a question faster that he could. Not because I wanted to show him that I was right. But because I wanted to show him that I was definitely my father’s daughter.
Wait! One more thing before you click away to read more of my posts…..ahem:
Please consider participating in this survey. Cancer and its treatment often cause symptoms and side effects that can be managed by the oncology care team to improve a patient’s quality of life. The goal of this survey is to help us understand how oncology care teams and patients/families are engaging in conversations about these issues and what opportunities may exist to improve such interactions. (Your responses are anonymous and will be used in the development of educational activities to help clinicians improve discussions with patients about cancer symptoms and medication-related side effects.)
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