I want to start by apologizing for the very long hiatus I have taken from writing this column. There are several reasons for my absence, a few of which I would like to address.
To begin with, it’s hard. Yes, the same can be said for just about every other journalistic endeavor. It sometimes is difficult to find the right words, or the right topic to write about. However, when it comes to writing about my medullary thyroid cancer (MTC), there are many reasons why this sometimes feels like a daunting task.
Read about experimental therapies for MTC
I often relive the toughest moments in my life in order to find the topics to write about. Once I have found the topic, I have to sift through the trauma and emotions that often accompany my thinking back to 2016.
That’s the year this cancer flipped my life upside down. Although I am still dealing with many things on a daily basis, most of my journey took place in that single year, 2016. Looking back at the pictures of myself from that time, it often seems like a different person was going through it. My life has basically been split in half: life before and life after cancer.
So yes, it’s sometimes hard to go back and relive those moments.
Another factor is self-doubt. A constant question in my mind is what information and insights I can share that healthcare providers (HCPs), researchers, MTC patients, and their families can learn from and act on.
I can share a patient perspective on a few things, but is it really helping anyone to be a better caregiver? Is it helping anyone find a diagnosis faster for the next person who walks in with “weird” symptoms?
Finding a topic that might interest healthcare providers, is a challenge. In some way, I feel like there are only so many times I can tell you how much I regret having done radiation. Or what exactly this cancer has done to my mental health and my family life. There are only so many columns I can write explaining my story before it becomes repetitive.
Having said that, I do want to answer questions. If I can help a provider understand an aspect of MTC care better, that’s my goal. Maybe I can be a voice in the darkness for a newly diagnosed patient who needs to see that it’s not all going to be darkness moving forward.
And then there are family issues. As anyone with small children can probably attest to, this flu season has been out of control. My son has had 6 or 7 illnesses in as many weeks. Mix all of that with increased work demands as a registered nurse, mental health struggles, and other curveballs to juggle, and… you get the picture.
I want to recommit to my column in the new year. In fact, I want to write more. I want to share my story, my struggles, and my hopes for the healthcare system and its approach to rare diseases. So, let’s start this new year.