Once you receive a cancer diagnosis, you become increasingly aware of all the different cancer awareness months for all the different types. Just because I had breast cancer doesn’t mean I’m only aware of my type of cancer. If anything, I want to learn as much as I can about all the different types of cancers now that my body is open to a possible secondary cancer down the road.
I take time to constantly educate myself and talk with others in cancerland to better understand their type of cancer and experience. The more I talk with others outside of the breast cancer world, I find more community, acceptance, and humor. Though our cancers are different, there are many shared experiences which is comforting.
I receive a lot of requests to help with breast cancer awareness events, help to promote other cancer events or help to review a new patient-facing product both locally and nationally. It can often be difficult when people notice a skill that makes them want you to volunteer for everything cancer related. Soon, instead of it being fun, it starts to feel like work, draining, and stressful.
That’s how the thinning of oneself begins. People often mistake my bubbly personality and upbeat voice as ready to take on the world. It’s almost like they forget that I still must work and support myself to pay for all the various scans, doctor visits, medication, and the ever-mounting medical bills. So, before the pandemic, driving to a volunteer meeting or racing to get home for a Zoom meeting that would add another two hours to my day took momentous effort.
The reality is most of the time I just want to relax on the couch munching on peanut M&Ms while watching Dateline, Snapped and some other thrillers with a handful of dramas, a dash of comedies and a pinch of romance.
It’s fantastic to be noticed but at what cost? Since breast cancer, multiple surgeries, harsh treatments of chemotherapy and radiation that have caused permanent damage to my body means I can’t handle stress the way it used to.
It needs more rest.
It needs more calm.
It needs more deep breaths.
Though I’ve moved out of palliative care that somewhat helped with pain management, I still battle chronic pain from fibromyalgia and neuropathy which wears on me mentally and physically. The fatigue is overwhelming because sleep can be difficult due to painsomnia.
I think people outside cancerland can’t fully understand that many of us aren’t simply tired. When you’re only tired, it’s implied you can sleep and feel recovered the next day. Chronic fatigue with the added layer of pain means there is no recovery or waking up feeling energetic. It’s another night of tossing, turning, groaning, never finding a comfortable sleep position, and waking up feeling even more drained than the day before and quite cranky. I’m currently looking for a clinical trial for patients who have already been diagnosed with fibromyalgia or neuropathy, but the current available medications to manage it are not working. I plan on engaging with Ancora.ai’s patient community on social media to see if other breast cancer patients who are in post-treatment have this kind of difficulty and sensitivity to side effects.
It’s okay to speak up and say NO to a request of your time if you’re feeling overwhelmed. Making yourself a priority feels odd and selfish. I know I’ve had to retrain my thoughts to accept this is true self-care and not selfish.
I remember when I was at the Leukemia & Lymphoma Society Blood Cancer conference last year. I brought my mother in the hopes of learning more about her rare blood cancer and give her the sense of community she craves but won’t admit she needs.
My naturally bubbly and talkative self couldn’t help but engage with others and the vendors. One of the vendors asked why I was there because she noticed my favorite breast cancer ribbon barrette in my hair. I told her I was there for my mother and at that time was a three-year breast cancer survivor and dealing with severe chemo-induced neuropathy and fibromyalgia.
She said, “You don’t look unwell. You look just full of energy and healthy.” I always find that comment interesting, especially at cancer events. Don’t they realize the sheer effort it takes to appear energetic and “healthy?”
As much as I try to take my expressive nature down a few notches, I always end up thinning myself out. I’m naturally a tad extra and dramatic which can be exhausting once I come down off the high. It’s just another reminder for me to practice more self-care and make it routine. Thinning myself out can easily mean another trip to the ER or with pneumonia like last year. I’m not looking for a repeat of that.
Of course, there are activities that I say YES to as well. They are the ones that fully fuel my passion and advocacy or feel where I can help make a real difference, even if just by showing up. Though it can be a mental and physical struggle to get to events or meetings, I have found once I arrive, I feed off the energy in the room and feel inspired. I am always fully aware of when my energy starts to wane and when my pain gets to a warning level and know that’s my cue to leave before it becomes too debilitating to walk to my car and drive home.
Saying no to volunteering for cancer events or other events that are happening virtually is also our right and not selfish. Don’t let anyone guilt you into saying yes either. Be firm because you’re the one who must deal with the after-effects and not them.
About the author:
Megan-Claire Chase, also known as Warrior Megsie, is a 4-year breast cancer survivor in Atlanta, GA. She is a sought-after influencer and blogger in the Young Adult Cancer community both nationally and internationally. Her blog, Life on the Cancer Train, is about her life post breast cancer (Stage IIA Invasive Lobular) and the struggles of being a young adult cancer patient/survivor while advocating for better treatments and resources. Megan-Claire’s writing is known for being authentic, raw, and informative with a twist of humor. It is also syndicated on Cancer Health Magazine’s website. She’s been a guest blogger for multiple cancer support sites including Lacuna Loft, SHARE Cancer Support, and Humor Beats Cancer. Megan-Claire was featured this year in The New York Times in April and People magazine in June discussing the concerns of receiving cancer treatments during COVID-19. Her cat Nathan (Natey) Edgar is her pride and joy.