Sunday, December 1, 2013

Online Cancer Support

Over the course of the last 3+ years, I have “met” a lot of people that have neuroendocrine cancer through online carcinoid support groups such as ACOR and Facebook.  It’s hard to meet many carcinoid patients in person because this is such a rare cancer.  I’ve learned a lot by communicating online with other patients to talk about their experiences with doctors, treatments and other issues.  I’ve also become friendly with other patients who write carcinoid blogs.

Several months ago, I “met” Suzanne Murphy.  Suzanne had had a poorly administered Sandostatin shot and found my blog while she gathering information about this pricey drug.  We started communicating and I learned that she also wrote a blog about cancer (called Gulf Gulf’s blog).  Suzanne had both neuroendocrine and cervical cancer.  Her blog was well written, funny and heart-wrenching at the same time.  I put her blog on my mine and she did the same. If we had lived near each other, we would most likely have met and in person and become close.   Her last post was from the hospital about a month ago.  A few days ago, I was thinking about Suzanne and googled her name. What came up was her obituary. She died on Halloween. I feel so sad about her death. Suzanne was 39 when she died. She leaves behind a husband and three young sons. 

I’ve had other online carcinoid buddies who have died but somehow Suzanne’s death hit me harder.  I guess it was because she was so young and such a great blogger. 

Online cancer friends are great to have.  We share the same disease and understand each other’s issues and thoughts, sometimes better than those in our family or circle of friends.  Nonetheless, an online friend is not physically close. When the going gets rough, they may go offline and you may not know what happened to them.  Sometimes, people go offline and nothing has happened, they just needed a break.  Other times they die and you may not ever know it. 

 Rest in peace Suzanne. You will be missed.