When you’re facing a harsh disease, use every tool at your disposal.
Cancer brings a hefty load of communication. Set up a support community and online journal at www.CaringBridge.org or www.CarePages.com. Each lets you post news updates 24/7, when you feel like it – even from inside my hospital, which had wireless! It saved hundreds of phone calls, hours of emails. Plus, web visitors wrote expressions of support in my “guestbook,” which were heartening. (They’re all captured in the book I mentioned yesterday.)
Find a community of your peers. Google your disease plus “support,” for instance “kidney cancer support”. For less common cancers, www.acor.org is best.
The Internet has truckloads of garbage; learn how to filter it and find the gold. The best way to do that is, again, through your peers, who rapidly debunk the junk.
Take care of the caregiver. Get relief for the people at home who give so much. Arrange some days off, with someone else covering; if neighbors bring dinner, accept it. Your caregivers might benefit from a support group of their peers; they may be experiencing loss, too: loss of their dreams, fear of losing their future, and more. Caregivers should be straight about their emotions, too, same as you.
Learn to advocate for yourself. Expect respect from doctors and nurses, and get second opinions whenever you want. If a doctor suggests you’d be better off not asking so many questions, get a different doctor.
You can learn a lot from the free e-book E-Patients: How They Can Help Us Heal Healthcare (PDF, wiki ). I didn’t read it until my adventure was mostly over, yet it took my breath away.
E-patients are empowered, engaged, equipped and enabled. When I got my cancer diagnosis, I became one fast – and I’d never heard the term. You can be one too.
So ends my list of things I wish I’d known from the outset. How about you? Does any of this help? What did I miss, that’s helped you?
A parting thought:
I had no preparation at all – zero, zippo – for the life-threatening adventure I entered 19 months ago. It seems like a lifetime ago; in a sense, it was.
As positive and activist as my perspective was, please be aware, I knew all along that I really might die soon. In a sense, it was like heading down a big “flume” ride at an amusement park, with no certain control over what was going to happen. Yet I knew, even if I was going to die, I could still choose to be fully alive during the whole process.
That might seem odd, but think about this: If I’d clenched my teeth and fists, it wouldn’t have helped my cause at all, and might well have taken me out of the fight, mentally.
In a couple of posts here I’ve mentioned that the only question worth asking is, “What can I do that would make any difference?” My hope for each of you is that when a crisis arises in life, you’ll have the presence of mind to fully participate in your care.
Blessings on you and yours.