Reflections: One Year Into My Journey

by Sheena Harris-WilliamsPatient, Neuroendocrine CancerOctober 6, 2021View more posts from Sheena Harris-Williams

“I feel alone when I’m surrounded by friends…” That song lyric sticks out so much for me now. Even though this song was written about love and had nothing to do with cancer, this particular lyric can ring true for a person going through cancer. Don’t get me wrong, I have a good support system around me, but I still feel alone. I’m sick and tired of the toxic positivity. I’m over the religious rhetoric and the “be positive” speeches I receive when I speak about my cancer. Other than that, nobody knows what to say. And nine times out of ten, I don’t need you to say anything. Just listen. I don’t fault them for not knowing what to say because ten times out of ten they just want to be there for me in the only way they know how. And honestly what could you possibly say to comfort a person fighting for their life?

For this reason, I’ve shut down mentally and emotionally. Outside of my therapy sessions, I truly have nobody to listen to me. And if someone is listening to me, the right things aren’t being said. I don’t want the “stay positive” pep talk. I don’t want to look on the bright side. I don’t want to be reassured that God gives his hardest battles to his strongest soldiers. Spare me the inspirational quotes from Oprah’s favorite authors or inspirational quotes you find on a pillow at Home Goods. Because it’s all just meaningless words. It’s like the phrases are programmed into our mouths like a pull string doll. “Everything will be ok.” “Stay positive.” I’m always tempted to respond, “How do you know that everything will be ok? It’s easy for you to be optimistic when you’re not the person going through it.”

When I was first diagnosed with cancer and I made it Facebook/Instagram official (because nothing’s official until it’s on social media *sarcasm*), my cousin who just beat cancer told me to surround myself with other cancer patients and survivors. That it was important to build that community. I didn’t grasp why at the time, but as things began to get rough, I understood it. And it’s still the greatest piece of advice I’ve received. Now that I’m in this unfortunate club, I will pass that advice on to all newly diagnosed patients. Your family and friends who’ve never had cancer can support you, but they don’t understand the full extent of the toll it takes on you. And like I said before, they may not know the right things to do or say. I’ve come to realize that this is a painful and stressful time also for those in your inner circle. They are dealing with their own feelings and fears about your diagnosis. They worry about losing you. They worry about your well-being. But somehow they must do all of this while putting on a brave face in front of you.

That’s another reason I try to hide or don’t speak on the things I’m going through. I don’t tell my mom the full extent of my side effects and emotions. My husband probably knows the most by default because we live together, but I hide things from him too. Having cancer is probably one of the most vulnerable things you can go through. It’s a time when you have to ask for help. You have to rely on others in some of your darkest moments. And that’s hard for me. I’ve always prided myself on never asking for help or relying on other people. And those people include my family. I’ve always been fiercely independent. 

I cry often during my alone time. I think about how unfair life is. I think about all of the physical changes happening to my body, internally and externally. I get upset about my dry skin. How dark my feet are now. No more open-toed shoes for me! I think about how steroids are going to make me gain weight. It’s vain, I know, and I’m aware that I’m in the process of saving my life. But… I don’t care about saving my life anymore. I feel completely broken. Chemotherapy has been rough on me. Some days I’m too tired and too sick to get out of bed. On the inside I feel even worse. It feels like sharp razor blades set up shop in my stomach. When I’m on chemo, gearing up for it, or in the recovery period, I think to myself…is this worth it? I feel robbed of my remaining youthful years. I feel robbed of ever having a child. I feel robbed of being a newlywed. I feel robbed of enjoying the fruits of my labor as a business owner. I feel robbed of just living life. 

Prior to my diagnosis, I was beginning to feel like life was finally looking up for me. For once in my life, I felt happy and excited about the future. In your twenties you are still figuring things out and becoming the person you want to be. I envisioned my thirties being the decade I’d become the person I was meant to be. I just hit 30, just got married, decreased my hours at my part time job and was spending more time working on my business, which meant I got to spend more time at home for the first time since I was 18. I was on my husband’s insurance. We were trying to have a baby. We were looking for a new place to live. Long story short, I was beginning to feel like an adult. I felt like a grown woman who was independent, strong, more confident. I found myself. Nowadays I feel like a shell of my old self…the happy life I was just getting settled into. 

But nobody understands that. They can’t see it from my point of view. Their only view is me still being alive physically. Yes, I’m alive physically, but I’m dead in every other way. I know cancer affects people of all ages, but I’m just here to talk about my experience. I went from being completely healthy, no prior health issues, to having a laundry list of medications and living in doctor’s offices. Every month I’m being poked and prodded. Anytime I go to the ER (which has been rare, thankfully), doctors come in the room shaking their heads at the sight of a young woman going through all I am, or they’ll say, “So you’re my patient with the neuroendocrine cancer.” Even though all of these things are part of the process, they trigger so many emotions.

It kills me every time I walk into my oncologist’s office and see I’m the youngest person there. It triggers the “why me, why now?” conversation in my head. There’s never a perfect time to be diagnosed with cancer, but why now? Why did it happen to me when I finally got the opportunity to start living my life? It kills me when I see my friends having kids, enjoying their careers, simply living their lives. All while I’m at home in bed, dealing with the physical and mental anguish that comes along with having cancer. Why now? Why me? 

So you see, when you’re battling hard with your life still hanging in the balance, unsure which direction it’ll go, it’s easy to slip into a depression. With cancer you have to take in all of this new information, adapt to a new lifestyle and say goodbye to your old life. There’s not much time to mourn or take in your new set of circumstances when you have so many life-altering decisions to make so quickly. Once I was set with an oncologist and had my treatment plan in order, I began to mourn and I haven’t stopped yet. I guess it’s because I can’t accept the fact that the party is over. I’ll never be cured of this. This is my new reality. I’m always going to be bouncing from treatment to treatment. And for me, what kind of life is that? I’ll never get to be the woman I once was. The woman I was happily becoming. And I can’t escape it, because the reminders are everywhere. When I open up social media, turn on the TV, turn on the radio, talk on the phone or text my friends. I see everybody moving through life except me. I’m slowly moving along with this ball and chain permanently strapped to my leg. 

I’ve connected with people all around the world through Instagram and Facebook groups. We share our struggles, our fears, our progress. It serves as a reminder to me sometimes that things could be way worse. It also serves as encouragement that there’s a possibility for life on the other side of cancer. The only obstacle: getting there. Sounds easy on paper, but there’s a lot of work to be done to get there. And you just have to hope all of your efforts work. I find myself to be envious of the patients with a positive attitude about their situation. Like how is that even possible? What am I missing? I tried to be that way in the beginning, but that died pretty quickly. Of course, I know these people struggle some days. I know it’s not always sunshine and rainbows for them. But on those good days, I wish I could have a fraction of their zest for life. Unfortunately, I don’t. 

So you may be asking what gets me through. How do I ‘cope?’ My answer: dark humor and TikTok. It’s crazy how your mental health tanks with cancer, but your dark sense of humor reaches an all time high. Isn’t that funny? I guess it’s because you’re faced with your own mortality…and at this point, what the hell do you have to lose? That’s become my mantra in life…or what’s left of it. It’s kinda freeing. However, I realized pretty quickly it makes some people uncomfortable. I share a funny cancer-related meme or tell a joke about dying, and people go silent. Or they try to comfort me with more toxic positivity. Then I comfort them with the phrase “it is what it is.” And honestly if it brings me some laughter, let me be. Because that’s what this journey needs, lots of laughter and love.

Join the Conversation!

Leave a comment below. Remember to keep it positive!

4 Comments

  • Angie C. says:

    Thank you Sheena for capturing what it’s like being AYA. Love this!

  • Mary Taylor-Harris says:

    Love your transparency. Keep your head up.

  • Krischell Yates says:

    What an awesome message Sheena. Never give up Boss Lady💞

  • Rebecca R. says:

    Sheena, you have put into words what I think inside on a DAILY basis. There is not enough of THIS type of cancer representation out there and that needs to change. I echo the sentiments of your cousin; that connecting with “cancer friends” is really the only way you can truly express these darker thoughts that most people in your life won’t know how to receive. Cancer will be a part of my life for the rest of my life, and it’s very isolating when people don’t understand that toxic positivity is not helpful. Just know that there are plenty of people like you who react to cancer with realism; we have good days, bad days, and ok days. And it’s perfectly fine to express the full spectrum of how cancer impacts you as a whole human.

  • Leave a Reply

    Your email address will not be published. Required fields are marked *