November 27, 2012
While writing my book Everything Changes, I met with patients on the fringe of death and those for whom cancer was a horrible incident from which they would fully recover. Regardless of the gravity of their illness, many young cancer patients think about end-of-life issues.
When friends and family are rooting for your health and thinking positively, it can be really challenging finding someone willing to listen to your needs and desires around complex medical decisions, end-of-life care, and how you want to be remembered after you are gone. That’s why I was thrilled to discover Voicing My Choices: A Planning Guide for Adolescents and Young Adults. Having a document which brings up these issues in non-threatening language can really help steer the conversation. And many parts of this guide become legally binding advanced directives too.
Some people find grim and scary the topic of end-of-life planning. Others find it a relief to talk and plan practically for the inevitable. Whether it is three years or sixty years from now, the bottom-line that my husband loves to joke about is that none of us are getting out of here alive! So why not at least be prepared?
November 01, 2012
I’ve taken a year-long vacation from blogging. During this time I cared for a family member with severe dementia, and nursed him through to the end-of-life in hospice. It was the culmination of four years of caregiving filled with anguish, love, and major health care advocacy. It was a complete 180 being a caregiver instead of a patient. Focusing on Alzheimer’s, a disease for which there is no cure or treatment, presented its own separate challenge and fight.
It was hard to stop blogging. I was addicted. But I needed to cut from my life many things I loved in order to focus my attention, almost 100%, on being a caregiver. Ultimately, it has been good for me to not focus so heavily on my own illness and on young adult cancer. I have discovered other parts of my identity that lay outside of my own oncology experience.
I’ve decided to resume blogging, though with a lot of new work on my plate, I’m modifying my approach. I might post less frequently and have decided to discontinue the comment section. I’ve loved all the dialogue created here over the past three years (just dive into the archives for some juicy conversation). I hope you will continue to link to my posts on your blogs, facebook pages, and twitter feeds, where you can moderate your own heated and fruitful debates about young adult cancer issues.
As always, I continue to respond personally to every email I get from a cancer patient or loved one. You can find my email address on the contact page above.
Wishing you strength, smarts, and maybe a bit of vengeance on your cancer journey.
Over and out,