What did you know and when did you know it?  The anniversary of symptoms, treatments, other major events can be a significant part of whippleLife.  What’s been your experience as time passes?

While every disease brings its own set of challenges, I believe that facing pancreatic cancer and living with the treatments and procedures that can delay or even cure the cancer, is one of the most personally profound experiences a person can have.  I believe that due to the ever-present threat of fatality, coping with this disease, even in remission or cure, reveals something authentic in us.  What helped you cope and survive?  That gave/gives you hope?  How to you hold and look to the future without fear?  What inspires you and allows you to feel joy?

There are few of us out there…whipple patients…whipple surviors…pancreatic cancer survivors…

What is your experience of having this particular disease and/or living with this major surgical intervention? Have you, do you feel like you’re going through it alone? How are your circumstances like/different from those of others you know or have heard of in similar circumstances? Do you know any who is in our tribe?

How did your surgery and recovery impact your ability to live life as you had prior to the surgery? What challenges have you faced as you try to return to your “normal” activities of life and work?

How debilitated did the surgery leave you? What helped you regain strength & stamina? What rehab strategies were recommended, worked, or didn’t help? How quickly did you find your strength return?

A place to share stories of how you have experienced or are experiencing post-operative pain. How did the pain change over time? What helped (or didn’t)?

Research is ongoing about how to treat pancreatic cancer and different approaches are taken at various facilities around the country.  Share information, insight and experience about new research and/or clinical trials in this section.

Janet’s comment on the “why whippleLife” page has me thinking more about how this resource can be best structured for effective use. I’m going to try starting topical discussion posts on this main page to address common concerns like the question of diet which Janet raised. Though I’m still working to organize my own story in a chronological fashion for “recovery from the cure,” it seems that making topical recovery point prominent might be helpful.

Following my Whipple procedure I was repeatedly told by various medical personnel that it was the “most extensive surgery we do.” Of course I knew that ahead of time, but the repetition of the fact and the lack of resources available for recovery seemed at odds with one another. If this was such extensive surgery, then why was the recovery and discharge procedure no different from the most routine operations? Where was the “What you can expect” brochure that exists to help patients guide their recovery following any one of a number of common medical procedures.

I had come through the pre-surgical chemotherapy and radiation very well and the immediate physical recovery following the surgery was positive. As various physicians came to examine me I heard, over and over again, “the incision looks great!” and indeed it did. But that was hardly the whole story.

In the weeks after I went home I came to understand that though I was fortunate enough to have received treatment which eradicated my pancreatic cancer, the cure was going to be my biggest physical challenge. I would need to refocus my attention away from having been cured to needing to recover from the process that had saved my life. I realized that the surgery which finally cured me was only the beginning…

Share your story; share your fears; share your insights. This website is intended to help those of us who have undergone the extraordinary “whipple procedure” and are struggling or succeeding with the aftermath. It’s for those who are “recovering from the cure” for pancreatic cancer.