As featured on http://www.curetoday.com
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 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:
- 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 aides in soothing me so it’s not as torturous. But guess what, there will be good days too. Enjoy those.
- 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 cliche verbs such as fighting, 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 cliches.
- 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.
- Prepare to learn the meaning of friendship. There were 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. 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.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.
- Think about what you will do on the other side. I can not 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.
- Get a therapist. Your doctor is leading the team on physical healing, but you can not 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.
- 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 non-profit. 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.
- 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 in his pipeline.
- 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.
- 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.
Read my other Cure articles here.
Stacie Chevrier 
What great ideas for getting through this. I’m newly diagnosed and don’t even know the questions to ask. I will be subscribing to your blog.
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Hi Dena – Thank you so much for your feedback. I’m glad you found this post helpful. I’m sorry about your diagnosis. Please feel free to send me a message anytime. Wishing you the best of everything. -Stacie
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This is the second post by you that I have read…….great. You and your posts are what I have been looking for….Recently diagnosed with NET and have been tested, probed, poked etc…Reading your posts I feel as if I am on a parallel path as you….I will definitely continue to follow….. A challenge for me is finding support groups. support people etc….now i have found 1
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The best support group I found was a Facebook group specific to my rare cancer.
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So glad you’ve found a group that works for you. Wishing you all the best!
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This is a great post for the newly diagnosed. I agree with all of this.
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Thank you for reading and for your kind words. :)
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I agree with all of this as well. In fact, 17 years ago, with the more rare and early breast cancer, and being much alone in a strange town, I intuitively did much the same. I walked into the bathroom and quite unexpectedly for me, looked in the mirror and proclaimed to the cancer, “You are not taking me now!” However, also unexpectedly, it turns out that I am one of the nearly 30% of cancer survivors with permanent chemo brain, and that has been worse over the long haul than the cancer itself and its treatment. And yes, unexpected people stepped forward in positive ways to be of help. And those I thought would be there, well, they were there only tangentially. One friend sent her first book manuscript for me to copy edit. It wasn’t the greatest thing, but I did it anyway. And all these years later, I’ve seen the real her, that that person is a user and highly self-involved despite having economic security and a long and happy marriage (neither of which I have at all, profound economic insecurity in my case as I ultimately “lost it all” in the years following treatment because I just couldn’t seem to get “me” together again), and anyway, she is no longer a friend. I made that choice due to her actions. But yes, it is fine to be upset and scared and even angry that cancer happened to you. But your choice is to meet it head on or to curl up in a ball and let it consume you with fear. Guess which one increases your survival chances, or so it seems? P.S. because I was adopted at birth, in a state that still has sealed records, in a private adoption, mine is suspected to be hereditary, but we’ll never know. And I hate that!
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Hi Martha – Thank you for your comment and for reading. I agree completely that finding the positive and knowing who your real friends are is part of the cancer journey. I wish you all the best with chemo brain (ugh!) and continued health. :)
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I am writing from my office, where I’ve recently returned to work after completing (and, thankfully, having several months to move through the early stages of recovery) aggressive chemo-radiation treatment for an atypical carcinoid of the thymus. I’m having one of those afternoons where the anxiety of living with a tumor in my chest has snuck up and commanded my attention. I wish I had found your site last September when I was diagnosed, but even reading this post now is helpful. I have resisted finding a support group to this point, but now I’m feeling more ready and am hopeful to find a group or two particular to my rare disease and/or to being a cancer survivor in my 30s with a young child. I look forward to exploring your blog more in the future!
Also – I fly from NC to see Dr. Wolin. My doctors at home have been very open to collaborating with him, and I am so grateful that we found him early in my journey!
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Hi Anna – Thank you so much for reading and writing. It is such a process. 3 years in and I still have days of anxiety, but am learning to manage them better. As “they” say, it’s a process. I still have not joined a typical support group, but have found so much value in some online communities. I’ve also met wonderful, knowledgeable people through social media that have become real life friends. I do shelter myself a bit from certain groups due to “whining” and “one upping”. I hope that doesn’t sound too harsh. ;) This community is small, but often more knowledgeable about NETs than the average medical professional. I’m so glad you see Dr. Wolin. I might be biased, but I think he’s just the greatest – and the reason I’m alive today. I always tell him I’d follow him to Siberia. I’m half joking, but totally not. Please stay in touch. I’d love to chat with you more or help you in anyway I can. All the best! -Stacie
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Hi Stacie,
Have been following your blog and wishing you the best with your first PRRT treatment. When you’re up for it, I’d love to connect and talk with you about how you best communicate with Dr. Wolin between visits. Hope you are doing well!
Anna
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