My dad, once he knew there were no more treatment options, was ready to leave us. We weren't so ready to lose him and our journey, our grief, and our learning to live our lives without him, continue. In some strange way, as much as I miss my dad terribly, I'm glad that we were able to be part of his final journey. It was the most meaningful experience of my life. I have no regrets, other than that I wish from the bottom of my heart that we, and no other family, had to go through something like this. I wish that there was a screening mechanism for pancreatic cancer, better diagnostics, and better treatment. That's also my hope for the future.
Suggestions for Pancreatic Cancer Patients / Caregivers
Thanks to the pancreatic cancer patients and caregivers who were kind enough to share their wisdom with me, I've compiled some suggestions on how best to deal a diagnosis of pancreatic cancer.
Call PanCan toll-free at 877-272-6226 or email email@example.com to speak with a PALS Associate - immediately. The Patient and Liaison Services (PALS) program offers individuals and families assistance with pancreatic cancer information, clinical trials searches, and support resources.
Don't settle - local doctors may not have the skills necessary to combat the disease. Consult with surgeons and oncologists who have pancreatic cancer experience.
Get a second opinion from a top pancreatic center like Johns Hopkins, MD Anderson or Columbia. You don't necessarily have to visit; you may be able to send your medical records to be reviewed.
Don't waste time. Pancreatic cancer acts quickly and time is of the essence. Tests and treatment should be scheduled in a very timely manner.
Take notes at each doctor visit. It's hard to remember what was said after the fact. Ask for copies of reports. Keep a notebook with all the information you compile.
Create a team to coordinate logistics. You're going to need one. For example, one of my brothers arranged chemotherapy drivers, another was the liaison with the medical professionals, and my third brother made sure dinner was on the table when we got home. If you don't have family and friends who can assist, your church or local support groups may be able to help.
Research, read, and learn. Knowledge is not a dangerous thing, it's your ally. I got more, and better in some cases, advice from the Johns Hopkins Patient/Family Chat Room than I did from some medical professionals. Kathy, whose mom died of pancreatic cancer last year, echoes my thoughts, "Virtually everything I learned about pancreatic cancer, hospice, the book Final Gifts, and bereavement, I learned there."