in my Tribe
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?
Shortly after I found out I had cancer I setup a page via the CarePages website. Shortly after I read the case of a young woman who was diagnosed around the same time I was. Over time we emailed occasionally but mostly just read each other’s CarePage notes. As I’m now preparing to go back to work, I note that she posted on her page that she’s been admitted to a local hospice program. A strong reminder of what a unique and individual journey we are each on. I’m take solace that this wonderful individual is surrounded by a strong network of family and friends.
whipplelife
June 20, 2008
[...] editor wrote an interesting post today onHere’s a quick excerpt [...]
My Cancer Treatments » Blog Archive » in my Tribe
June 20, 2008
I keep wishing I was wrong…
I’ve written elsewhere on this blog about the dearth of resources for those with pancreatic cancer, not to mention those who have had whipple surgery. I just received my package of information to help me get started as a phone volunteer with the R.A. Bloch Cancer Foundation and am saddened to say that there’s nothing there I’d hadn’t already discovered.
There are, of course, a couple of organizations doing critically important research into prevention and especially early detection, but still very little about how to find peers for support when you’re already on the journey. I write this because I can hardly keep the tears away when I read the stories of other who felt or feel so alone and remember how I felt just a few months ago. Support and networking is SO important. Our tribe may be small but we need to find each other and stick together.
whipplelife
June 21, 2008
The more I read the more I am struck by the individual nature of living with the aftermath of this surgery. I’m also struck by the private nature of it. With other forms of surgery or physical trauma there are signs that the individual has undergone something different. I know I am a physically different person and am constantly aware of that difference, yet those around me have nothing to remind them of this fact other than that I’m “doing so great.” There are times that this reality is reassuring and there are times when I wish people “just knew” what living with the change was like.
Recently our local paper ran a story on an elderly gentleman to underwent a whipple twelve years ago and is doing great. The story was almost entirely about his “normal” life and virtually nothing to educate readers as to the numbers of people who undergo the surgery or the realities of living life with it!
whipplelife
August 10, 2008