The Decision Was Mine. The Conversation Was Ours.
Every family has moments when the future narrows to a decision. Sometimes the decision arrives all at once. Sometimes it gathers slowly through appointments, questions, second opinions and the realization that there may never be one certain answer.
When Patty and I faced one of those moments, I expected the hardest part to be choosing. I was wrong. The hardest part was learning how to make a decision that was mine without making the experience mine alone.
There is a difference between asking, “What should I do?” and asking, “How do we move through this together?” The first question can place the decision on someone else. The second makes room for honest conversation and shared understanding without giving up responsibility for the choice.
This is not a story about finding the perfect answer. It is a story about learning to live honestly with an imperfect one.
After I was diagnosed with bladder cancer, it became clear that my bladder would need to be removed. That decision brought another one with it: How would my body work afterward?
There were several choices for replacing the bladder’s function. Each came with different risks and possible complications. My doctors could explain the procedures. I could read about what might happen. But none of that could completely answer the question I was really trying to understand: What would it be like to live with this choice?
I was 54. Patty and I still imagined a life that included travel, swimming, time in the sun and being active. Survival came first, but quality of life was already part of the decision. I was not only choosing a surgery. I was choosing how I hoped to live afterward.
Patty and I talked about the options and what each might mean. We talked about the risks, the recovery and the possibility that things might not go the way we hoped. During those conversations, Patty said something I have carried with me ever since:
“This is your body. This is your choice. I support you in anything you decide to do.”
At first, that might sound like she was stepping away from the decision. She wasn’t. She was making room for me to own it.
Patty understood that she would live with the consequences too. She would be beside me through surgery and recovery. She would help carry whatever the choice asked of us. But she did not use that reality to take the decision away from me. Her support did not end the conversation. It made a more honest conversation possible.
I still needed more than medical descriptions, so I looked for people who had actually lived with a neobladder. Through a Facebook friend, I was connected with Richard. He talked openly about the surgery, recovery, leakage, sexual changes and the seven tubes that would be coming out of me right after surgery. His recovery had gone fairly well. Within several weeks, he had returned to a level of activity that surprised me. He believed the neobladder had been the right choice for him.
Through another Facebook friend, I was connected with a second man who also had a neobladder. It just so happened that his experience had been much harder. He developed a leak after surgery and spent months feeling sick before his body was ready for another surgery to correct it. Despite all the challenges, he too believed the neobladder had been the right choice for him.
Neither man told me what I should do. Their experiences did something more useful: They helped make the possibilities real. One showed me what could go well. The other showed me what could go wrong. Together, they helped me understand that two people could go through very different recoveries and still believe they had made the right choice for themselves.
I brought those conversations back into the ones Patty and I were already having. We considered what I had learned. We talked about the life we hoped to preserve and what we might face if recovery was difficult. Patty did not need to make the final decision to be fully part of it.
Ultimately, I chose the neobladder. The surgery happened to my body, but what followed entered both of our lives.
That has been true of many decisions since then. Cancer returned. Treatments changed. New options appeared, stopped working or came with effects we could not fully predict. The final choice has remained mine because it is my body. But the conversations have remained ours because this is our life.
The patient’s right to choose matters. So does the voice of the person who will stand beside the patient after the appointment ends, after the papers are signed and after everyone else has gone home. Listening to that person does not weaken the patient’s ownership of the decision. It helps both people understand what each of them may be carrying.
Patty never tried to decide for me. She listened. She asked questions. She shared what she was thinking and what she feared. And when there was no certain answer, she trusted me to choose the path I believed was right.
The decision was mine. But I did not have to carry it alone.
The conversation—and the life that followed—has been ours.
—Scott
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Life Between Scans shares experiences, not prescriptions. This Reflection is grounded in Patty and Scott Carroll’s lived experience. Every patient, caregiver, diagnosis, treatment, and decision is different. Use what fits; leave what does not.
