Saturday, September 13, 2014

Some Advice for Survivors

When I decided to write a memoir about my mother’s cholangiocarcinoma and my time taking care of her, I promised myself I would write my story within the parameters of love, forgiveness, and gratitude. But, this is one time I will defy my own guideline. I want to speak directly to hospital volunteers, other nonprofessionals, and even professionals like ministers or surgeons who feel compelled to talk about their successful experiences with any disease or surgery.

My mother underwent several small surgeries and a failed attempt at a larger surgery in hopes of eliminating the tumors in her bile duct and liver. One surgery, called the Whipple, is particularly intense and can last up to eight hours or longer. Mom elected to have this surgery, since it was the only hope she had of ridding herself of her disease's fatal nature. Dad and I felt she wouldn't make it through the first cut of the knife, considering her weakened condition, but she was determined.

During the thirteen days between her doctor's appointment and her surgery date, mom sought out every thread of hope she could about the success rate for this surgery. Her search for hope was understandable, considering the seriousness of the procedure. But, other people, at the mere mention of "Whipple" or "bile duct cancer" had their own stories to tell. None of these stories boded well, since they were all filled with hope. Let me explain...

If you feel you need to buck up a patient by telling him or her about your own miraculous operation or recovery, just stop and imagine what it would feel like if you had to undergo a major surgery and the surgeon gave up on you. How would you feel if you learned that your surgery was a failure, when so many others were seemingly so successful? My father and I cringed every time someone told my mother about an uncle, aunt, brother once removed, or pet that had undergone a Whipple surgery five or ten years ago and who were living happily today.

Although mom made it through the knife, she didn't make it through the pre-determined eight hour time frame. She knew, after the nurses wheeled her bed into recovery, that she didn't spend enough time in that operating room for any type of success. She had been in surgery for less than two hours. The surgeon decided, after he opened her up, that her cancer had metastasized far too widely for him to help her.

Mom then spent the following week after that failed surgery agonizing over why she failed, like it was some sort of test. She compared her failure against all the success stories she had heard. Granted, she sought out some of that encouragement, but an inordinate amount of that bragging (yes, bragging) was unsolicited.

In sum, my father and I are happy for cancer survivors, particularly those who underwent a successful Whipple surgery and are living a good life today. But, if you want to expound on your success, go tell it to a mirror or to another person who survived what you survived and see if you can one-up each other. Stop talking to critically ill patients about your success. One alternative is to simply wish that patient luck. That’s all. Then, go on your merry way, please. Thank you.

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