While in the shower pondering life like many of us do, I frequently imagine how different the conversations with my doctors would have gone if I knew then what I know now.
When I was diagnosed with cancer, it was a huge relief to learn I would be dealing with what my doctors would call “the good cancer.” Papillary carcinoma of my right thyroid lobe was the best cancer to get, so great in fact, that they could rid me of the evil with one easy surgery. They would remove that tiny mass, sew me up, and with the exception of adding a pill to my daily routine, I could go on to live my very normal life. Except, nothing after that day would be normal again. I was fully unprepared for my new life.
Let me first say that not all doctors belong in the same box, I know there are exceptions to generalities. My endocrinologist and surgeon both have excellent bedside manners and apparently precision knife skills. I was adequately educated and prepared for my surgery. What is lacking in the doctor to patient education field is preparing patients for after, rather that means after their first treatment, or their last treatment. For me, they were one in the same. I was told what I needed to do to get rid of the foreign cells invading my thyroid, but I wasn’t told anything about how that would change my life forever. I thought they’d take the sucker out, and on with life I’d go.
At this point, I had not done extensive research on my own, for fear that I’d come up with a thousand reasons this cancer was going to win. Instead, I do what I never do, I listened. I didn’t WebMD all day or Google all night. I let my doctors guide me to my surgery and it went smoothly, just as they said it would.I was in and out in a day and night and prepared to get back to normal after a couple of weeks of healing and binge watching what felt like every possible show on Netflix.
The first change in my body I noticed started a couple of weeks after I returned to work. I noticed that around 10:00 a.m. every day I was getting sick. I was sweating, shaking, and feeling nauseous. What I’d come to learn after logging my symptoms and putting the pieces together was that I could no longer drink regular coffee. I now had a terrible reaction to caffeine and my daily 9:00 a.m. cup was now making me perk up in all the wrong ways. Luckily, I can still drink decaf. I’ve had strangers jokingly say “what’s the point” when hearing me order my decaf addiction from Starbucks. I want to scream that the point is that I won’t let cancer take my coffeeand to just let me enjoy my damn beverage. The same goes for alcohol and carbs, apparently my body metabolizes totally different now. I’m 30 pounds heavier, and have the alcohol tolerance of a 90 pound teenager. So now, not only am I coping with my new body, but it gets quite tiring explaining to people why I can’t start drinking at 10:00 a.m. at the bachelorette party and be expected to make it past midnight. Or why I’m really hot or really cold and that I will always win the thermostat wars by default.
I make light of these side effects, using comedy to explain them so that people don’t view me as weak or a burden, or think they have to make special considerations for me. However, there are more serious effects that can occur and they vary in severity, being different for each person. You as a reader, or as a patient don’t need a full list of ways your body and your life changes after being diagnosed with cancer. What patients do need, is proper education about how the next 5, 10, 20, or 50 years are going to change in a big way and how to manage that. I wish I could have prepared myself instead of waking up one day and realizing that my life will never be the same. It’s quite the shock, and as clichéd as it sounds, I regret not being able to say goodbye to my old self. To relish just one more day symptom free, knowing that I would have a different journey ahead of me would have been a nice parting gift.
Maybe specialty doctors have so much knowledge and information about the medical issue at hand, that there just isn’t enough room to think about the next steps. I don’t claim to know how it all works behind the scenes, and I am not proposing a single solution, but attention needs to be made about the lack of aftercare thought during diagnosis. Maybe there is a need for aftercare specialists to be assigned to patients, maybe there could be more doctor education on the topic, or maybe it’s just more guidance on where to go for aftercare information besides self-searching the internet abyss.
When I was diagnosed, I wish I had been guided on how to prepare for my life after cancer. That even though I would be cancer-free, the battle was just beginning.
Jackie Fenimore, 31, is a Northern Virginia native who works in the automotive industry and enjoys hiking with her pup, shark tooth hunting, reading, and reality T.V. She's 5 years cancer free. This guest column appears on Diagnosis: Cancer through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over one million patients and caregivers.
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