How To Be An Extreme Patient Advocate: Patient Advocacy is My Jam

Written by Blythe Hundley

If you could cure a loved one’s cancer by researching their specific type, Dori would be annoyingly healthy (like those actresses who say they prefer to eat clean food that they have grown organically themselves than any of that processed [said with disdain] food)…because I can tell you more about metastatic uveal melanoma than some medical professionals (not ones that I would recommend that you see…they don’t sound that smart).

But the cancer is here, so now it’s time to become an advocate for your loved one. Note: EVERY PATIENT NEEDS AN ADVOCATE. Don’t believe anyone who says differently. [Side note: Believe that they may not want you to act in that capacity, and respond accordingly. Now is not the time to be offended...you’re not the one who is sick! Stop being selfish.] Every person/situation/illness is different, so some of these may not apply to you in your situation. Just know that the more work you put in for your Dori (whomever it may be) the less work she has to do. And remember…your Dori doesn’t feel well, doesn’t have energy and shouldn’t be doing their own advocating. (While others may be calling you the patient advocate, know yourself for what you really are…the medical bitch. And own it. And know that you are doing exactly what needs to be done for your Dori.)

Top Five Ways To Be An Extreme Patient Advocate:

1. Go to physician appointments with your Dori. (Even better…schedule the appointments!) Take notes. Always. Take. Notes. Use the same notebook and allow them to have it between visits.

2. Send a calendar to family/friends who are assisting with care so everyone is aware of upcoming visits (so they can help with childcare and coordinate after-appointment assistance for the patient).

3. Research. Research. Research. By the end you should know every 12 digit gene mutation name and every side effect of every potential medication. (If you don’t understand these that’s okay. Find a guy you used to drink Natty Light with in college who has gone on to medical school or a girl who you judged in psychology 101 for wearing short skirts who is now a nurse practitioner. Make them explain things to you. Don’t feel guilty about this…people love to talk about what they know.)

4. Make friends with people at medical appointments. Your Dori may not feel well enough to show their sparkling personality. It’s on you now. Make friends for her. Make people remember both of you so that when you call later people want to take your call. This makes follow up so much easier.

5. Be pushy for your Dori. This may sound contradictory to #4 but they can work well in tandem. Pushy comes in handy when dealing with insurance companies and schedulers. If you get someone who is not budging, kindly thank them for their [not] help and hang up. Call back. Most scheduling departments and insurance companies will have another person answer your call and 50% of all people are less dickish to work with. Persistence is key.

Besides these five tips, the best advice I can give is to have honest conversations with your Dori. For us, these have included such gems as, “I can’t believe I am holding a bag with this much of your hair in it…how is there still some on your head?” and “Your wig on my kitchen table looks like a dead animal.”

This may be a plot twist you didn’t see coming, but isn’t that always what makes the book more interesting? For all of the sadness this has brought us, it has brought us the opportunity to spend so much more time together than we would not have had otherwise. Do you know how many more games of 7 Wonders we have been able to play because of cancer?? Sure…some of them have been in the hospital and now my cards are covered in MRSA; but the quality time has been worth it. Do you know how many more times my nephew has been a part of my pretend gluten-free cooking show while I’m trying to invent ways for his mom to get vegetables that don’t make her post-chemo nauseous? Do you know how much more often my brother-in-law and I have been able to bond over our shared love of food? The real gift is in the opportunity to show someone how much you love them by acting in the exact capacity they require at this moment. This book isn’t finished yet…we’re all pulling for the heroine, but the chapters in the middle of the book are always the best!