MCSMN Blog

July 19, 2019

Hope for the Best, and Plan for the Worst–Experts by Experience

By Allan Butler

Life, as I knew it, was crashing down. I was sitting with my wife in the oncologist’s office and had just been diagnosed with stage 4 pancreatic cancer. But, I was about to experience some of the most optimistic and hopeful words I had ever heard.

My doctor could have told me about the bleak prognosis, where only a handful of patients survive until the one-year mark. He could have prepared me for the upcoming hardships I was going to face from the harsh chemotherapy regime. Instead, he chose to highlight the positives:

1. I was a relatively young manonly 53so I would have more stamina to fight a long-term battle.

2. The bleak survival statistics, with which I was already too familiar, are based on old data that is no longer reflective of recent advances in pancreatic cancer treatments.

3. Despite pancreatic cancer being considered an “incurable” disease, we could work together to manage it successfully through a combination of chemotherapy, radiation, surgery, and experimental treatments.

In my panicked state, and with a history of being a “glass-half-empty” kind of person, I could have been forgiven for focusing on the negative. Yet, something in his words inspired me.

Even if only a very small number of stage 4 pancreatic cancer patients, out of hundred, make it past the first year, why couldn’t I be one of those lucky few?

That conversation with my doctor took place over six years ago.

Now, this isn’t a storybook ending. I still have stage 4 cancer, but the past six-plus years have been fulfilling and joyful beyond belief. So, with the hope that my experience can be helpful to others, here are some important lessons I learned...

First, recognize and accept that this is your new normal. While you will no doubt feel a sense of loss for the activities you can no longer pursue, think creatively about the things you can do nowor might be able to do if you push yourself. As a former professional athlete, I had to give up many of the demanding sports that I loved. But I was able to replace them with new activitiesdaily walks, crossword puzzles with my wife, sailboat rides on the waterfrontthat I now enjoy just as much.

Surround yourself with caring, supportive people. There is immeasurable power to be gained from the energy of others. Before I became sick, I would often try to be tough. However, since my diagnosis, I’ve gladly accepted my wife’s entreaties to take care of me. Formerly casual acquaintances have now become best friends who check in regularly to make sure I’m okay.

Appreciate each day as a gift. Before, I tended to take some days for granted. Now, whenever I find myself moping around, I remind myself that there are only so many days to be lived, so I better not waste them!

Make intermediate-term goals to give your life some direction and purpose. My kids were just starting college when I became sick, and I desperately wanted to be there when they graduated. I was able to accomplish that.

Then, follow up with some new goals. Now, I’m setting my sights on my daughter’s wedding, later this year.

Think two steps ahead when it comes to your health and treatment strategy. I always want to know what’s next, whether the current treatment is successful…or if it isn’t. That gives me the incentive to research upcoming clinical trials, for example, before I am in an urgent need of one. And, I seek out second, even third opinions from leading doctors.

Most importantly, I have this advice for physicians: My oncologist raised my hopes with his inspiring words. I do realize this might not be appropriate for every patient. But when given the choice between offering a patient something to live for and shifting their focus on the positive, or dashing their hopes, why not choose the more optimistic route? It made all the difference for me.

Experts by Experience is a collaboration between  Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author: Allan Butler has survived four major cancer surgeries, two rounds of radiation, six clinical trials, and countless rounds of chemotherapy. He previously played professional ice hockey in France and is now retired from the National Geographic Channel where he produced award-winning documentary films.

Choose a message to share 
He's living his best life - even with stage 4 pancreatic cancer: #Pancreaticcancer #Oncology
Hope for the Best, and Plan for the Worst–Experts by Experience #Chemotherapy #Oncology
How do you adjust when a life-threatening illness becomes your new normal? #Cancer #Oncology


Tags: cancer, Experts by Experience

Thank you for this inspiring story, Allan. Two people very close to me are pancreatic cancer patients – my best high school buddy and my older sister. Every time I share that news with someone it's as if I mentioned the bubonic plague. Did you take any other steps to protect yourself from the negative reactions of others?

COMMENT
@DanHinmon

Thank you for this inspiring story, Allan. Two people very close to me are pancreatic cancer patients – my best high school buddy and my older sister. Every time I share that news with someone it's as if I mentioned the bubonic plague. Did you take any other steps to protect yourself from the negative reactions of others?

Jump to this post

Hi Dan, interestingly I can’t think of any negative reactions from others (except for the one person who asked me how long I had to live!) I supposed it’s because I am the patient and so when I tell someone, they seem to put their best foot forward and try to be positive. However my wife has experienced what you described, when she tells others about my situation. She deals with it by telling people that no one ever knows how long they have to live, and so we all have to enjoy each day as it comes and be hopeful. And that pancreatic cancer is a terrible disease but there are many that are able to survive for a good while. You just have to stay positive, despite the crappy prognosis. I hope that helps a little bit. I wish you and your friend and sister the very best for positive results with their cancer treatments.

COMMENT
@butler3222

Hi Dan, interestingly I can’t think of any negative reactions from others (except for the one person who asked me how long I had to live!) I supposed it’s because I am the patient and so when I tell someone, they seem to put their best foot forward and try to be positive. However my wife has experienced what you described, when she tells others about my situation. She deals with it by telling people that no one ever knows how long they have to live, and so we all have to enjoy each day as it comes and be hopeful. And that pancreatic cancer is a terrible disease but there are many that are able to survive for a good while. You just have to stay positive, despite the crappy prognosis. I hope that helps a little bit. I wish you and your friend and sister the very best for positive results with their cancer treatments.

Jump to this post

Thank you for this reply, Allan. @butler3222 Your wife's response is golden: "No one ever knows how long they have to live, and so we all have to enjoy each day as it comes and be hopeful." Thanks again for sharing your story with us.

COMMENT

“Most importantly, I have this advice for physicians: My oncologist raised my hopes with his inspiring words. I do realize this might not be appropriate for every patient. But when given the choice between offering a patient something to live for and shifting their focus on the positive, or dashing their hopes, why not choose the more optimistic route? It made all the difference for me.”

Exceptionally great advice.

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