A survivor shares her words of wisdom.
Anytime a friend or family member knows someone newly diagnosed, they get sent my way. I love this because I believe in mentorship, but I hate it because it’s a role I never wanted. Actually, I don’t think anyone wants this job.
When I connect with the referral, I often find that they’re looking for words of wisdom and my reaction is, “You’re coming to me? OMG! I have no idea what I’m doing.” But, when I take a step back and meditate on the years since my diagnosis, I realize that I have acquired a significant amount of wisdom on navigating the maze, so below you’ll find some of my biggest lessons learned along this crazy road:
1. Prepare for bad days. They’re inevitable. I created a list of things to do on when cancer or life gets me down. On my list: take a walk, call a friend to hang out, go to yoga or for a run, watch Jimmy Fallon lip sync battles, you get the idea. Doing these things doesn’t always turn a bad day good, but they do aide in sooth me so it’s not as torturous. But guess what, there will be good days too. Enjoy those.
2. Choose your vocabulary. I hate being called a “cancer patient” and prefer “cancer survivor,” which I assigned to myself on diagnosis day. I also decided not to claim cancer by choosing to refer to it as “the” cancer and not “my” cancer. Sure, it’s a play on words, but words matter and have power. I often roll my eyes at cliché verbs such as “fighting,” and battling and nouns like “warrior,” but I can see where others find great power in these words. This is your experience and you get to choose the words to describe what you’re going through - not prepackaged phrases or clichés.
3. Limit your research. Yes, you read right. Google’s search results can be overwhelming. While being an informed patient is critical, there comes a point where it’s too much. Set a timer for an hour, do your Googling and then go live your life. It might even be helpful to plan your research at a specific time of day. I don’t Google in the evening. Otherwise, I stay up all night thinking. I Google before something fun, so my mind does not dwell on the results for too long.
4. Prepare to learn the true meaning of friendship. There are people who showed up for me, who I considered acquaintances before illness. They were people who called, texted, sent me cards, cooked me dinners and took me to appointments. There were also friends I considered close, who went missing in action. I’d be lying if I said it didn’t hurt. I understand - cancer is uncomfortable and not fun, but I now know the true meaning of friendship. Words cannot express my gratitude for these angels and I would go to the ends of the earth on their behalf, as they did for me.
5. Think about what you will do on the other side. I cannot accept that we are given these obstacles for no reason. I think it’s important to discover meaning or the lesson in a traumatic experience. Do you want to help others affected by the disease? Awesome. Or do you want to erase the experience from your memory? Totally understandable. Whatever category you fall into, do something! Take the trip you’ve been talking about for years. Write the book. Run the marathon. Jump out of the plane. Make amends with the family member. If cancer teaches us anything, it’s that there are no guarantees, so minimize your chances of regret.
6. Get a therapist. Your doctor is leading the team on physical healing, but you cannot ignore the mental, emotional and spiritual aspects. Cancer is a torturous mental challenge and having an outside opinion has been instrumental to me. Ignore this and you’ll miss important aspects of healing. Plus, it’s sometimes difficult to talk to those so close to you about big fears that accompany the disease since they themselves are so emotionally invested in you.
7. Find a support group. It does not have to be traditional. It just has to work for you. I still have never been to one where you sit in a circle and cry, but I have met countless lifelong friends through a weekly writers’ workshop and a young survivors nonprofit. I also participate in an online group of people with the same disease. It’s here where I found my specialist and often research treatments. I always thought of support groups as therapy, but they can also be a wealth of information.
8. See a leader. No one will hold your best interests at the top of their mind the way you do and having the right doctor is game changing. Life-saving, in fact. Don’t settle on the first doctor who crosses your path. Visit at least two or three—more if your case is rare. Find someone who’s doing research on your disease and not someone who’s following the pack. It took me several opinions to find a specialist who knew what to do with a one-in-10-million diagnosis, but once I found him, my world changed. He disagreed with all the previous opinions and I know I am alive today because of his experience. I travel from Nashville to New York City to see him every six months and often look forward to hearing the research is in his pipeline.
9. Be relentless. It is exhausting, and the only time I’ll ever refer to disease as a fight is in reference to navigating the medical maze. My doctors call me relentless and I take it as a compliment. I do not leave them alone (respectfully) and because of this, they return my call or email quick.
10. Practice gratitude. It wouldn’t be a post from me, if I didn’t mention gratitude at least once. There will be days it will be hard to be grateful for anything, but believe me when I say, there is always something to be grateful for, even if it’s being alive, which is a privilege denied to many. Write these down. Re-read them when times are tough.
I’ve also learned these lessons are constantly shifting, evolving and revealing themselves. Cancer survivorship is a process and I am a grateful participant. I wish the same for you.