Friday, January 14, 2011

Be Your Own Advocate

"Can you make me better, Doc?"

When we're first diagnosed, that's the question many of us may find rising to the front of our minds - whether or not we ever voice it. We look to our doctors to be healers, to cure our illness, to make us better.

Few of us travel very far down Cancer Road before coming to realize there's a lot more to it than that. There's so much to learn about the disease and its treatments.

I can remember the hours I spent reading Elizabeth Adler's Living With Lymphoma: A Patient's Guide (still the most informative book I've found about the biochemistry of this disease). Suddenly I found myself reading, with great interest, all about the chemical components of human lymphatic fluid - a topic I never dreamed I'd have the least interest in. Having cancer changes that in a hurry!

Today my friend and fellow lymphoma survivor Betsy de Parry published an article, "Candid Cancer: An active role in your care matters." Reflecting on her experience as a long-term survivor, Betsy asks:

"So why not just tell the doctor to fix it? The short answer is that medicine has come much too far and become much too specialized for us to simply be passive participants. In many cases, there are treatment choices, and we can only make sound decisions if we understand them. And aside from cancer's physical impact, there are emotional, practical and day-to-day challenges that we need to face and address....

In fact, if there is one thing I've learned from all the survivors I've talked with over the years - survivors of many types of cancer - it's that many of them are healthy because they became their own best advocates and learned everything they could about all treatment options. Many were told they'd be 'lucky' to be alive in a few years. Others simply refused to accept the next recommended treatment and searched for different options. They talked with other survivors and got second or third or fourth opinions."

So, don't be shy. March into your doctor's office with a notebook in your hand, and demand all the time you need to get your questions answered. Bring a friend or family member if that will help you remember what's said. Four ears are better than two.

Don't be overly considerate of your doctor's ego. It's no insult to say you want a second opinion. Good oncologists are used to this. Those who bristle at the suggestion are the ones you need to watch out for.

Don't be passive. Let your doctor know you want to be a full participant in treatment decisions. Ask for full explanations of why one treatment may be better than another, and ask for time to consider the various options, if that's appropriate. Go to the library or onto reputable websites (like to get the full story (or as much of it as your non-medical mind may be able to comprehend). There are lots and lots of good resources out there that seek to explain cancer so ordinary folks like us can understand it.

Jesus tells an odd little tale in Luke 18:1-8 that's often called the Parable of the Importunate Widow. That's an old-fashioned way of saying, "the Parable of the Pushy Broad." In the story, a poor widow is seeking justice from an unjust judge. He's a jaded bureaucrat who can't be bothered with shuffling case files from his inbox to his outbox any quicker than he absolutely has to. This widow, though, makes a pest of herself. She just keeps knocking on his door until he's obliged to rule on her case. Jesus ends by saying something to this effect: "If even a pushy broad like that can get some action out of a corrupt judge, won't our God of mercy pay even more attention to your prayers?" It's a word to the wise.

So, speak up for yourself. If you don't do it, who will?

Your doctor will respect you for it.


Whidbey Woman said...

You make some excellent points here! I stand in agreement.

Deb said... think exactly the way I do. My husband was diagnosed back in 2006 and given a 3 month longevity. I am his advocate and it's now his fifth anniversary since that dreaded day. Yes, totally agree, advocate, advocate, advocate. I'm going to post a snippet of you recent writings into my blog for others to read and I will also attach your blog address.

So happy to have found your blog!