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 this 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.
So, as PINKtober looms around the corner, I start getting requests to help with breast cancer awareness. It’s difficult when people notice a skill that makes them want you to volunteer for everything breast cancer-related. Instead of it being fun, it starts to feel like work, draining and stressful.
That’s how the thinning of oneself begins. People mistake my bubbly personality and upbeat voice as ready to take on the world. It’s almost like they forget that I’m still working fulltime with increasing responsibilities, which means using even more physical and mental energy during my 8-10 hour workday. So, driving to a volunteer meeting that adds another two hours to my day takes momentous effort.
The reality is most of the time I just want to stay home 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? My body can’t handle stress the way it used to.
It needs more rest.
It needs more calm.
It needs more deep breaths.
Now that I’m in palliative care to help with pain management, I can’t do as much as I used to force myself to do before. Fatigue is overwhelming. I think people outside cancerland can’t fully understand that many of us aren’t just tired. When you’re just tired, it’s implied you can sleep and feel recovered the next day. 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 and quite cranky.
Time to speak up and say NO. Making myself a priority feels odd and selfish. I’ve had to retrain my thoughts to accept this is true self-care and not selfish.
I was at the Leukemia & Lymphoma Society Blood Cancer conference yesterday. I went last year and was blown away by the keynote speaker Dan Shapiro. So, this year, I wanted to bring 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. After all, I want to start getting more speaking engagements and writing opportunities that will lead to paid ones. 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 am 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. Naturally being a tad extra is exhausting once I come down off the high.
It’s just another reminder for me to practice more self-care and make it routine. I’ve only committed to a few events for PINKtober instead of everything like I’ve done in the past. Thinning myself out can easily mean another trip to the ER or with pneumonia like I was in April and May of this year. I’m not looking for a repeat of that.
Saying NO to volunteering for cancer events is 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.
Until next time,
This post originally appeared on Life on the Cancer Train. It is republished with permission.