One year ago I was diagnosed with Stage 4 Hodgkin’s Lymphoma. Five months ago I finished treatment. Less than a month ago I stood up on a stage and shared my story.
I’ve always been a writer, whether it be journaling, poetry or plays. So when I got sick I knew I wanted to share my story in some way, I just didn’t know what that would look like. I thought about maybe writing a book as I’d never done that before. Then I started to get pressure from some people in my life to create something and that made me not want to anymore. I just wanted to go through the experience.
As I neared the end of my treatment though, I was hit like a ton of bricks by the world of recovery and was re-inspired to share my story. Before I was sick I had applied for a few Fringe Festivals (big theatre festivals all over the world that are the only non-juried festivals. Where the artists have to self market and get all the proceeds from Box Office). I was too sick to even think about doing the show I had originally intended (it was very physical and not a finished piece) so it came to me quite quickly that I’d do a storytelling piece. A mix between theatre and writing a book. And I’d take it to the Montreal Fringe because I got into the festival.
Storytelling can be very powerful and moving and I wanted to move people, to inspire and to educate. I wanted to help create space and community. A space for people to feel safe and vulnerable, for patients and survivors to know they’re not alone, for outsiders to learn more about what the experience of having cancer is like so they can be better equipped for when cancer crosses their path in some way. And I really wanted more people to know about the world of recovery because many survivors get abandoned by their friends after treatment under the assumption that everything is back to normal.
Here is an excerpt from my piece:
Late February, 2016
I don’t know how to react. I don’t want people to see my vulnerability in the happiness of having beat it. And even then, I don’t feel that happy. I feel lucky. I feel it isn’t fair. So many people have it so much harder than me. I’ve been told that it takes a while to get the junk out of your system, to physically and emotionally heal, so I am left with a mystery of what my next few months to a year will look like. I’m also getting concerned about money. I’m running out and can’t work full time yet. My mom assures me it will all work out.
It’s hard to tell how the documentary is going as we just continue to collect footage. I’m realizing that the story isn’t over just because treatment is done. I talk about this at my support group. Will it ever really be done? Cancer is always going to be a part of my life. That’s what I hear from everyone who’s gone through it. I’m working on my one woman show for the fringe. I’m going to stand up on stage and talk about myself. I’m writing my show but recovery is making it hard to focus on anything. I don’t have mental clarity and am getting really overwhelmed. Will I even be able to memorize it? I’m struggling with the feeling of whether or not my story is even worth telling. But then I think again – It wasn’t easy. I did still have cancer. Cancer. I almost forgot again, if that’s even possible. It’s hard to have something so serious in your life every day for so long.
It feels similar to when I got diagnosed. There’s the stress of telling people and that no one understands and I’ll be treated differently. They don’t understand that it doesn’t just go away. When you’re done treatment, it’s not over and I wish I had known that sooner. I wouldn’t have planned things for myself, I would’ve started to figure out my money situation. I could’ve warned people maybe. I feel like crap. Why does no one talk about this part? I don’t feel like myself. I don’t feel motivated, I don’t feel passionate about anything….I feel lost. I still need help but everyone thinks I’m fine and has left me. And it’s harder for me to talk about it because there’s this expectation or assumption that I’m back to normal. People are tired of taking care of me. Like I’m a burden. I’m starting to crave sweet things more. But I gained 15 pounds in treatment and I feel self conscious about my body now because half my clothes don’t fit. I don’t want to feel this way. I think I’m going to have a glass of wine. And drink alone. And probably watch Mad Men and waste away. I feel so different. This would all be so much easier if I had money. Recovery is harder to talk about because you can’t blame it on the chemo. Well you can, but no one will believe you. And it’s hard to believe yourself because you feel otherwise pretty good – body regaining energy, doing your own groceries… I’m tired of being sad and being sad makes me tired. Recovery is way harder than chemo ever was.
Getting my show ready proved very difficult, dealing with side effects of chemo brain and other emotional and physical factors. But I powered through and realized that this process would be more therapeutic than I originally thought. I would like to revisit it and expand on it once I’m further along my recovery and distanced from the experience. There will be more stories, more insights, and more of an ending. The healing power of talking and sharing stories is incredible and I want to share that with others.
Alyssa Kostello is a North Eastern Ontario native, now residing in Vancouver. A playwright, performer, producer, teacher and facilitator she is passionate about sustainability, the arts and community. She loves singing, kayaking and playing boardgames, among other things.