Asking for help is what I suck at most. I’ve always been independent–“fiercely” so, according to several folks from different aspects of my life. I’ve been known to back myself into a corner of ignorance sooner than ask a question, even of people I know and and love and trust.
That is ending.
I’ve started with the people I know and love and trust the most–my spouse, my family, my kid, my community of friends at the dojang where I’ve studied taekwondo for years. They’ve already surprised (and shamed) me with their generosity. My husband has put up with hours of doctors’ appointments (and done the hundreds of miles of driving required to do them); my parents have driven thousands of miles already, just in the caregiving phase of my brachytherapy; my best friend at the dojang has given me more free babysitting than I care to tally (and a coloring book called “Colorful Language” that has been a source of much laughter and wry humor even before I’ve colored a single page in it). I even have a group of taekwondo ladies with whom I can discuss the ins and outs of the health care system.
But those are all resources that I personally have, and they won’t do too many other people good anywhere else in the country. They’ve already got their hands full with me.
So in the spirit of sharing, here’s stuff that I’ve found that can do any OM patient good anywhere–because I wish to blazes I’d had all of these to look at when I first got my diagnosis.
Melanoma Research Foundation at melanoma.org
Ocular Melanoma Foundation at ocularmelanoma.org
Cancer Support Community at cancersupportcommunity.org
National Cancer Institute at www.cancer.gov
I’ve found each of these links helpful in various ways. But one of the most helpful things I’ve yet found is, once again, local to me, and I’m hoping that you folks might have something similar that’s local to you:
Legal Information Network for Cancer at www.cancerlinc.org
They’re a nonprofit that helps cancer patients access free or low-cost help to sort out all the legal BS that can erupt in your life in addition to cancer–things like advance directives, wills, powers of attorney, foreclosure, loss of health care coverage, denials of claims, loss of your job, etc. I’ll be seeing them later this week, and I’ll let you know what I find out.
And lastly, so much of the time I’ve wasted over the last few months could have been saved if I’d just called one number (or gone to one webpage) and asked for help:
American Cancer Society at m.cancer.org, 1.800.ACS.2345
Yeah, they’re big business. Yeah, you won’t necessarily get hold of someone who knows about OM right away (it is, after all, rare). But with just one phone call my sister managed to get information on clinical trials my doctor *missed*, information on *free* flight miles with major airlines, information on *free* lodging at two of the clinical trials sites I’m considering… In short, the ACS may be big business, but they swing an awfully big bat, too.
I’m learning how to ask for help. I may not be good at it, but I’m leaving a trail of breadcrumbs behind me for others who don’t like asking for help, either.