Wednesday, July 21, 2010

Patient Empowerment: Two

There are some experiences you can not understand until you're there.  Being diagnosed with cancer is one of them.
        Even with a history of cancer in my family, suddenly becoming the one with the diagnosis was surreal.  It was the first visceral understanding I'd ever experienced of my own mortality.  And the younger you are at diagnosis, the greater the shock and sense of displacement.  In a moment I'd navigated a passage from working writer/wife/friend/sister to "DidYouKnowThatJodyHasCancer, OhMYGOD."  From then until now has been and continues to be an incredible journey.
       Many of you know that I'm participating on a panel discussion Friday on "Patient Empowerment" in Chicago (Cancer Treatment Centers of America) with four awesome cancer advocates -- Joe Bacal, Lani Horn, Mel Majoros, and Matthew Zachary.  We'll be bouncing around "best practices" from cancer land, so to speak, or "what we wish we knew from the get go."  On Twitter and Facebook I've asked you to send me some of those tips.  Here's what you've been telling me to pass on -- and no, I DID NOT make any of these up.  Each of these -- as frightening as some are -- have been submitted by you within the past week:

1) I'm a person, doctor, not a medical record number.  Please read me the right report.  I don't want to know the results of anyone else's scan but mine.
2) Tap the power of the internet.   The internet can be essential for connecting immediately with someone in exactly the same situation.  Try Twitter or Facebook. You can post a question on Twitter and receive many cordial, helpful replies in a very short time.
3) Caregivers need support.  So much of the focus is on the patient yet the caregiver often needs as much if not more support.  Partners, especially those with young children, have the double whammy of an ill spouse, a job AND children all at once.  It's essential that our caregivers receive assistance, too, and with that said, one of my personal recommendations is:
4) Organize your treatment centered life. One of my best friends stepped right up on her own and organized people, meals, rides, and communication.  I am forever grateful to her.  You may need to ask someone to do so and if that's difficult for you to ask for help, CALL ME.  It can make so much of a difference for you:)  There are also awesome organizations you can call who will send you tools to do so:

  • The Lance Armstrong Foundation -- Survivor Care
  • The National Coalition for Cancer Survivorship: Cancer Survival Toolbox
5) Get support.  Cancer takes an emotional toll and the path toward depression is a slippery slope. "I know you can't say it is definitely going to happen for everyone," Debbie Thomas wrote,  "but maybe just a note that people might want to be on the look-out for that and what to do if it happens - seek professional help."

About Cancer Itself
1) Get the facts -- not the fears -- on cancer.  Our government's medical information is excellent and their web sites -- easy to navigate.  You can obtain good basic information from:
  • The National Cancer Institute:  You can stay on this site or follow links to the nation's NCI-designated cancer centers.  All of these hospitals, in turn, provide a wealth of information, and also link to non-profit organizations advocating for specific cancers.
  • U.S. News & World Report -- Hospital Rankings: Cancer:
  • The American Cancer Society is another great starting point. I especially like the section on treatment decision tools:
2) A young survivor wrote me this essential message:  "Your oncologist and hospital staff should know that cancer treatment & survivorship takes a multidisciplinary approach."  
3) "It's your life," a friend said the other night, "and at some point you stop being a patient and get back to living.  You've heard the old joke about the line you DON't want on your tombstone?  'I told you I wasn't feeling well.'  Get hold of your health."

I know I've just barely scratched the surface.  If there's something I've missed we don't go live until 2:30 Friday afternoon CT so please write here, email me at or send me a DM on Twitter to @jodyms!

Be excellent and thanks as always, friends.


Debbie said...

Wow Jody, it looks like you have lots of great feedback to bring with you to this rally, on top of all your personal knowledge and advocacy experience. All I can say is I'm glad you are on my side:)
Love as always, Deb

Annemieke said...

Dear Jody, You will knock them out with all the information you gathered and not to forget all you know yourself from personal experience. You will make such an important contribution to that meeting, as you do with everything you do. Cancer better hide its ugly face, it doesn't stand a change. Love, Annemieke

Jody said...

You are two of the best friends anyone could hope for -- thank you as always for your support:)

jms said...

Knowledge is power. The more credible resources we have access to, the more we will know about our cancer, as well as how to survive treatment and move forward with our lives. Because so much of the focus is on the cure, I believe a lot of people think cancer is only chemo and loosing your hair. Today, someone asked me what I did, and I said, "I give the gift of survivorship." It's a gift every cancer patient and their family needs. It's a gift you give as well, sweet lady.


Lauren said...

Overcoming the emotional challenges that accompany a cancer diagnosis is tough not only on the person diagnosed but also the family members, friends and caregivers. I'd like to recommend the following website: as an additional resource. On this site you can find local support groups, online support groups, and advice to help you through your entire cancer journey.

Tom Stitt said...

Jody - Thanks for taking the time to submit your proposal to SXSW for 2011. As you probably noticed, the volume of submissions this year for the Interactive Festival were overwhelming so the SXSW staff pushed the start of voting until Weds 11 Aug. Best of luck with the voting.

Jody said...

I really appreciate you encouragement. I was grateful to see my proposal selected for voting; whatever happens, it's a step forward! Thanks for everything you did with SXSH and #HCSM to make this possible.
Warm regards,