I do not know about you, but music has helped me through some of the best and worst parts of my life. Take cancer, for example. When asked what my fight or survivor song is, I say, “Sorry Not Sorry” by Demi Lovato. It came out in 2017 when I was diagnosed with Hodgkin’s Lymphoma. It was just a song at the time, but after going through chemotherapy, it repeatedly played in my head and I thought to myself, “Oh, heck yeah!” The song was not just about cancer, but the events that happened while going through cancer.
I was told I was to blame, that if I ate right, if I drank this or that, did not take certain medication, etc. It was madness, and at the same time, I was losing people I thought I knew and starting to find places and people who understood me more. Talking with others in the AYA cancer community, this seems to be an extremely common occurrence in their stories, also.
When I am in AYA cancer group meetups (I dabble in a few), I have heard people’s definitions of survivorship. However, when I started connecting with the community, I had a challenging time figuring out what people meant by “survivorship.” Still thinking like a cancer muggle, I thought it meant somebody who no longer had cancer in their body. What I found out by listening in these groups is that there are several definitions of survivorship. Some people believe that survivorship happens exactly when you get diagnosed, you are surviving cancer; you are still going through cancer, but you are surviving it so far. There are people who maintain that survivorship is when you no longer have cancer in your body. But then think about the people who have cancer continuously; who are in treatment the whole time, do they not deserve survivorship? How would you define survivorship?
Before cancer, I had a rough life. My parents divorced when I was young. I do not remember them as a couple; they were just Mom and Dad, two separate people in two separate houses and worlds. I was diagnosed with a learning disability in my first years of school, when I was in 2nd or 3rd grade. I was a child in the middle of my mother’s abusive relationship (the kind where I thought I’d have to kill or be killed). In addition, having support people taking advantage of their positions, I have had to deal with random illnesses throughout my life (the kind where you are such a special case but not special enough to get answers to). These are parts of my story; these are parts of my survivorship.
How I define cancer survivorship may be different from others, but it’s all me. It reminds me of the song “Die Another Day” by Blind Channel. At the beginning of the song, lines stand out to me.
The song starts:
All my life
What a waste of time
I wonder why am I still alive
This is a common question I have heard in the cancer community, “Why am I alive, when so many I’ve known aren’t with us?” and “I have to do something with this time I have, for those who don’t have the time or didn’t get the time.” I know those questions well and have asked myself them in different parts of my survivorship. The question I have is, why do we feel like this? We are surviving, shouldn’t we live for ourselves while remembering those before us? The answer is yes, but it is hard with our own self-doubts, muggles’ comments in our lives, and the pressures of the world, we naturally measure ourselves against others. Fellow survivors have been published, created podcasts, started nonprofits, and well, you are just trying to “keep up” with your peers. I get that, boy, do I get that. There is no secret to their successes, they just put one foot in front of the other and marched on, they kept going even when times were tough. So, for those questions, I say it is up to each individual person.
Blind Channel’s song continues:
All my scars are a work of art
Falling apart is where my story starts
Holding on to errors
I find in myself
Holding on to horrors
I try to forget
I’m waiting for the end and
I need a meaning to make me whole again
These lines deeply connect with my life before, during, and after cancer. I have mental scars like most people, but when I was 29 and with cancer, I thought, “Great. Why another obstacle? Why is another thing in my way of just trying to survive? Why is it so hard just to live life?” I had to get three separate biopsies: one in my breast/armpit area and two near my heart. I also had a port placed. Now I have both kinds of scars. I do not see them as a bad thing (well, some days I do), but I see them as a part of my woven story. There is beauty to them.
Before cancer, there were parts of my life that fell apart, but not as rapidly as when I was going through treatment. Friends ghosted, my energy was drained, and life seemed like a staircase with no exits or landings to rest upon. It was also where a new part of me sprouted. I continue to hold on to the errors of my past and am nervous about the errors I may make in the future. But life is imperfect, so I will take those errors and correct them if I need to, but sometimes errors happen.
I am in a more comfortable spot in my cancer survivorship, being that I am 5+ years out, but I often find myself being zapped into some of those same feelings and emotions from time to time. One of the horrible things that happened was I was vaginally bleeding out on my bed the first time I had chemotherapy; it is a memory seared into my brain because of the thought of my mom being the one to find me unconscious or dead. Survivorship is not about forgetting what you have and are going through. It is to show how strong you are. You are that mama bear protecting her young; you are the warrior who battles on the front lines. We do not know what is waiting for us at the end, but we are all here to support one another till that day comes.
The chorus ends the song with:
This world is gonna fuck you up
It’s gonna get dark and it seems too tough
You don’t wanna carry on
I know all about giving up
‘Cause lately I’ve been looking hard
Where is my love?
Where is my luck?
Where is my faith?
My reason to die another day
My reason to die another day
These lines are so true, the world will fuck you up and it does get dark, and you feel like you cannot carry on. But you keep going, that is what survivorship is, you keep going even when you don’t think you have the strength. I am not saying it is easy! It is NOT, but you are in the driver’s seat.
I started going to therapy in the last two years because I knew I had some things to work out and prove to myself, and no one else. I also opened myself up more to the cancer community by going to more online and in-person activities. I think of those who are no longer with me, and think how they survived cancer for years, and what their faces look like, so I do not forget them. I think of history books of great people and how we can create our own personal history books that have those people in them. We author the stories of our lives, and we are the ones who get to define how we survive events in our lives.
I think Demi said it best, “Feeling inspired ’cause the tables have turned, Yeah, I’m on fire and I know that it burns.” “Sorry, Not Sorry” was not just about the cancer diagnosis but also how I chose and still choose to live my survivorship life, good or bad, I keep moving forward the best I can. Survivorship is whatever you make it to be; you can continue with what you were doing before getting diagnosed, you could change your location, you can strive to be like your fellow peers, or you could do all three or none of those because no one can tell you that you are doing survivorship wrong because, well, you aren’t. Your survivorship is yours. And if no one has told you this yet: You are doing it the best you can.
*Artwork in cover photo is original art by the author, Theresa Rees
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