There’s a certain frequency that your ears tune to after hearing the words “you have cancer” that is rarely heard at any other time in one’s life: A high-pitched ring that’s accompanied with the world going into slow motion, as if your entire world is re-calibrating, preparing for what’s to come. The next steps are pretty standard: Find the right doctors, let your friends and family know, schedule all of your tests and, in many cases, surgeries, and then the waiting game begins. But as is the case with any experience in life, there are curveballs. Oh, so many curveballs. After my breast cancer diagnosis, there were a number of times that the process surprised me, disappointed me, and made me stop and think, “why didn’t anyone tell me this was going to happen!”
These are five things no one tells you about a cancer diagnosis.
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Your friends and acquaintances will surprise you
I had a handful of friends that I had confided in about my diagnosis. “What can I bring you?” and “what do you need?” were questions I was texted and emailed almost daily from everyone… except one person. We had been friends for well over five years and there was nothing. Not a call, email or text — radio silence. I had always heard there were people who just don’t know how to handle a significant event in someone’s life; I just hadn’t expected it to happen to me. On the other hand, there were some acquaintances that went above and beyond. Friends of friends that I had known throughout the years or the significant others of friends continually checked in on how I was doing. I was surprised by both instances — the negative and the positive.
Your body will not feel like yours
There were a number of conversations I had with my surgeons about what was going to happen to my body, but no one sat me down and told me how I would feel emotionally once it was all said and done. My plastic surgeon walked me through the steps of my mastectomy and reconstruction, but no one prepared me for the first time I saw my own post-surgical body and did not recognize the reflection. The body that I had been born with was forever changed. The breasts that I had seen every day to the age of 32 were no longer the same; the landscape of my body was new to me. It took almost a year for me to become comfortable with the person I now look like and still, to this day, I get caught off guard by the scars that will forever adorn my body.
Your doctors aren’t always right
The dentist says to brush our teeth twice a day and the doctor says you should exercise at least three times a week. We listen to physicians because we are taught to, but are they always right? When I approached my oncologist about wanted to try hair conservation therapy throughout my chemo, he was skeptical. “That’s not going to work,” he said, matter-of-factly. I left that first appointment feeling defeated. He would know better than I would, I assumed, but the more I learned about hair conservation and the possibility that I would not lose my hair during a very aggressive six rounds of chemotherapy, the more I started to fight back. At first it felt odd, disagreeing with the person I had chosen to save my life; shouldn’t I just go along with his recommendations? The more I started to advocate for myself, the more I realized that these doctors all work for me; I hired them. No one ever tells you that you can question your physicians, but you should. I was surprised about how becoming my own advocate was the best move I could have made for myself after my diagnosis. I also wish I had known that sooner.
No one tells you what’s next
“You’re officially cleared to resume your normal life.” This was the sentence my oncologist said once my treatment was complete. A year of my life was spent shuttling from doctor’s offices, undergoing hours of chemotherapy and radiation and then, suddenly, it was all over. I was done, in the clear. I left his office and was so unsure of my next steps that I didn’t even know which direction to walk in. No one had prepared me for what happens when it’s all over. At no point had any member of my health team told me, “when this is over, here’s what you do.” I understand that each case is different; some people never stop working, some are able to just to ease back into their daily lives, but I had been diagnosed during a time where all of my friends were getting married and having babies. I wasn’t quite sure where that left me other than single, unemployed and completely lost. I was taken aback by how lost I felt after treatment and it certainly wasn’t as easy as my oncologist telling me to go live my life; a warning would have been nice.
The “what if’s” are always there
It has been close to 10 years since my breast cancer diagnosis and in that time, the fear of recurrence has not dissipated; not even a little. Every mammogram, every breast exam, I feel an overwhelming sense of “what if.” Your doctors won’t talk to you about the “what ifs” — not your surgeon, oncologist, or GP. In their eyes, their job is done; you stand in front of them, alive and well. They won’t talk to you about the “what if’s,” but they should. It is 100% okay to feel anxious every now and then; I just wish someone had told me that from the get-go. The “what if’s” remind you that you’ve overcome something that was designed to take you down.
A version of this story was published May 2019.
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