Chapter 84: May Means Grey
Photo by Shari Fleming Photography
May is here once again. In Minnesota, we were blessed this May Day with an 80+ degree sunny spring day. Glorious.
For brain tumor fighters, survivors, caregivers, and loved ones, however, May holds special meaning.
May is brain tumor awareness month. “Go grey in May” is often shared on social media, posted on t-shirts and flags, etc. I wish brain tumor warriors got to rock a slightly better color, but what can you do?
Personally, I’ve been feeling quite down recently. Although May brings awareness to brain tumors, it’s recently occurred to me that being a young adult cancer warrior/survivor is not something I can turn on in May and turn off the rest of the year.
For me, this truth is something I live every day and always will. Many young adult cancer survivors write and talk about how lonely they feel after “winning” moments of their battles. I never understood this, until recently.At the beginning of a cancer diagnosis, family and friends (sometimes even acquaintances you hardly know) step into the battle ring with you, holding you up and rooting for you. For the first few months of my battle, there seemed to be a constant stream of love, gifts, and support.
As time went on and I started to look less sick, however, this outpouring of kindness became less of a power wash and more of a leaky faucet, spilling a few drops here and there but leaving me mostly dry.
I don’t say this to invoke pity, to ask for cards or gifts or apologies. I say this because I’ve come to understand what so many young adult cancer survivors have been telling me. When the “hard” parts of cancer are behind you, loved ones see you as healthy. You look healthy, you act healthy, your hair has grown back, you move on with life. Well, at least this is what I assume it looks like on the outside.
But, internally, I am still a young adult cancer warrior. It is a battle that will never finish for me, at least not while I’m alive. Someday I hope to be a not-so-young adult cancer warrior, but regardless, this is how it will be for me forever.
I write this blog for my fellow young adult cancer warriors, survivors, and caregivers to say- I understand. You are not alone. You are stronger than anyone will ever realize.
May is brain cancer awareness month. May is also mental health awareness month. I fight both of these battles. As I type this, I wonder if there is a cancer equivalent for PTSD. There certainly isn’t a named medical condition that I know of, but really, shouldn’t there be? Cancer (and all chronic illness survivors) are warriors. We have fought battles that take strength, determination, discipline, and often force us to face horrific, fearful situations. Even when these situations end- when we are in “remission,” or (for brain cancer patients) when we are “stable,” we have still lived through a perilous battle. We still have the battle scars. We still have the battle memories. We cannot escape them, no matter how much we try.
Even when we look fine, when our treatments have finished, we still live every single day with the fear that the cancer will return. This is a challenging way to live, especially when “outsiders” stop seeing you as fighting a battle and start seeing you as how you were “before.”
All warriors know there is no such thing as “before” once there has been an “after.”
If any fellow physicians are reading and want to do a study with me on what I’m naming “PCDS,” let me know. Post-cancer. Post-traumatic. They are different, of course, but they are also not so different.
As many readers already know, I am a fan of scientific research. So, naturally, I looked into this idea. There are some small studies looking into PTSD in cancer survivors and these studies seem to imply that yes, indeed, there is a higher level of PTSD amongst cancer survivors than the general population. However, there doesn’t seem to be much (if any) research into the special psychological and psychosocial effects cancer has on a person. I would argue that the effects are widespread and long lasting.
Overall, I find myself a positive and optimistic person. I am usually able to think of a difficult situation as a lesson instead of a punishment. But, I am not perfect. I am not able to do this 100% of the time and feel incredibly thankful I’m at least able to do this a good portion of the time. Mindfulness is a practice for a reason, it is never perfected.
I am not haunted by daily flashbacks of surgery or battles as some PTSD warriors are. I am lucky- I am still alive, feel great, and am on a break from treatment. But, not all those in my cancer community are so lucky.
Today, I met an incredible group of people being honored at the “Humor to Fight The Tumor” non-profit gala this fall (yours truly included, an honor I am incredibly humbled by and thankful for). Meeting fellow warriors, survivors, and family of fallen heroes in person touched me in a powerful way. In an age of virtual connection, here I was, in a room full of (safely vaccinated and masked) people who will also never be able to go back to their lives “before” now that they’ve seen an “after.”
I have no lessons to teach in this post. May is a month for awareness, and that is what I will try to bring to the table. Awareness of the reality of being a young adult cancer warrior. Awareness of being a mental health warrior. Awareness of living life to the fullest, even when our internal demons threaten to bring us down with every move.
To my fellow fighters, May is for you. My fight is for you. I won’t be around forever, but if I can raise awareness to the battles we are fighting, the scars we have learned to hide, and the fear that we bury deep inside, I will have filled a purpose I just recently realized I had.
Fondly,
Courtney
©2021