Sunday, May 3, 2009

There is so much work to do....

In trying to organize my thoughts about what it is I hope to accomplish, I realize that there is far more need than I can address on my own. Luckily, I have had the good fortune of meeting some real experts in various areas of young adult cancer, health care advocacy and good old fashioned DIY getting things done.

My first goal, albeit an ambitious one, is to assemble and print a resource guide for young adults diagnosed with cancer. My hope is that it can be something doctors give their patients early on, that helps connect young adults to resources both online and in our community. Rick and I spent hours trying to piece it together- if our work can save someone else some time and energy, I would be elated.

This project is HUGELY inspired by the amazing work of my friend Jude and the Be Well! zine. In a moment of absolute crisis we turned to the Be Well! and found a program to help us get some of Rick's medication for free- a program even his oncology nurse didnt know about. I am forever grateful to Jude and her hard work, determination, and passion for helping the uninsured.

In addition to providing information on living with cancer, I want to be sure to address the possibility of dying from it. It seems that there is so much fear to talk about end of life issues, but I know first hand how important it can be to talk about while you're well enough to make your own decisions about it. I know that everyone wants to stay optimistic and cheer for recovery, but dying is an inevitable part of living, and one that I think a lot of young adults need help thinking about and planning for.

Of course I have lots of other lofty goals (wouldnt it be great if I could quit my job and focus on ONLY this?) but I'll save them for the future. If you would like to volunteer to help with the resource guide in any way, please let me know.

No comments:

Post a Comment