Just when you think you know something, life will teach you that you don't.
I thought I had a pretty good understanding of patients' experiences, having worked in patient education. However, when my aunt was diagnosed with a rare type of sarcoma in March 2011 and became a patient here, well ... that's when I really learned a thing or two.
Being at MD Anderson is like visiting a busy airport because you meet people from all over the world. Some people keep to themselves or rest, while others are eager to help, share their stories or hear yours.
Conversations are natural and friendly.
What I noticed on my aunt's first day, and at every appointment since, is that fellow patients are so willing to share what they're going through.
Sometimes the conversations are intensely private, even when among complete strangers. Other times the topics are lighthearted, normal, everyday things like an enjoyable meal. And that's nice, too -- being able to share regular life outside of cancer.
If even for a brief moment, the opportunity to share experiences with each other can reduce fear, and provide information and hope.
Our first day
While I sat with my aunt in the waiting room for her first diagnostic appointment,patients looked around to see where to go, fumbled through paperwork and anxiously waited for their names to be called.
As I attempted to read waiting-room magazines, I paid attention to the conversations around me.
Topics ranged from diseases and treatments to the cost of parking and the freshness of French fries. Apparently, they are best in Café Anderson on Wednesdays.
I also heard some creative explanations for delays. I saw a family giving each other stressful glances and overheard them discussing the long wait. Another patient addressed them, "See that little girl over there? Kids go first." In case you're wondering, that isn't true. Each patient gets as much attention as they need. On that day, someone needed a little extra care.
A thoughtful woman looked over at us. "The first appointment is always the most nerve-wracking," she said. "You'll be fine, and we'll pray for you, honey."
My aunt graciously thanked her for her kind words.
In the Sarcoma Center's waiting room, the stories became more personal. "Make sure you ask about this drug. It helped with the nausea," one man said. These are well-informed patients, I thought to myself.
Another patient had high praise for my aunt's doctor. "You'll love her. She hugs you after each appointment. That means a lot to us." The patient shared other reasons why she liked her doctor, but this was the extra cherry on top. Sure enough, after the appointment my aunt got her hug. It's refreshing that doctors take time for personal touch, and that families don't overlook these gestures.
Sometimes, the waiting room conversations are tough.
One day, a patient we had just met shared somber news. "Surgery isn't really an option for me, but I'm taking it one day at a time." The family was ready to take on the next step of treatment, but it was clear that the wind had been let out of their sails.
On that day, my aunt was the one to listen and give support.
Staying in touch
My aunt's condition will require monitoring for the foreseeable future. She doesn't mind it so much because she says it will give her a chance to see the other patients. Sometimes, she meets new people, but often she sees familiar faces.
Recently, we met a family from the same small town we are from. My aunt doesn't like that they have sarcoma in common, of course, but she sees it as a sign that they are both in the right place.
If you need support
Anderson Network's Telephone Support Line connects cancer patients and their caregivers with others who've been there. From a database of more than 1,300 survivors and caregivers, patients are matched by disease, mode of treatment and experience. Call 713-792-2553 or 1-800-345-6324, or email firstname.lastname@example.org.
The Sarcoma Alliance offers an online discussion board and a peer-to-peer matching service for support.
The Association of Cancer Online Resources has many sarcoma listserves that put you in touch with other patients and families. Registration is free.
To learn more about sarcoma