I Am Not The Only Person Who Struggles With Survivorship
June 1, 2016
I had the opportunity not too long ago to sit with a panel of cancer survivors in front of my husband’s medical school class and answer any questions they had about our experiences. One of the students asked if our stories resembled the classic cancer narrative—where after surviving you have this newfound happiness and appreciation for life. After putting more thought to that question, I decided to write about what the narrative looks like to me.
When I went into remission from osteosarcoma—bone cancer—six years ago I had no idea that so much of my recovery was still ahead of me. In fact, it was a lifetime ahead of me. What I am finding more and more is that survivorship is not a phase you pass through, but an ongoing lifestyle change.
The year that followed my remission turned out to be about the hardest year of my life. For so long I had viewed remission as the ‘light at the end of the tunnel’. I think that perspective may have been useful for the time, but ‘light at the end of the tunnel’ is not the language I would use to describe my experience. After all that your body and mind are put through during cancer, you cannot expect to be fully healed just because the doctors tell you that you can go home. I think that a better way to describe remission than a ‘light at the end of the tunnel’ is a ‘new chapter in the process of healing’.
For me this new chapter did not involve chemotherapy, drugs, surgeries, and hospitals. But my new trials involved things like anxiety, chronic nightmares, grief, disconnectedness, insecurity, etc. I felt that my treatments and surgeries had stripped away everything I thought I knew about myself. And when you are stripped of your looks, your hobbies, and your health, what can you identify with? Well, I would call this a question of a lifetime. And back when I was fresh out of the hospital and in a new world with a new body and mind, it was all incredibly confusing. I went through the process of longing for my old self for years before accepting that I couldn’t go back. I knew I could not spend my whole life grieving the loss who I was before, and that I needed to start paving a new path for myself.
As I began accepting this, I wondered why I had never been prepared for the agony that could accompany something so life changing as cancer. For the longest time I figured that maybe I just struggled more than the average person. But nearly every cancer survivor I have talked to has told me that the acceptance of their new life and the surrender of their old one is harder than any chemotherapy treatment they could be asked to endure.
My dear friend Catalina (pictured above) also had bone cancer and after going into remission was diagnosed with leukemia. She is again in remission and I recently had the opportunity to sit down and chat with her to get her experience with survivorship. I think that she perfectly depicted the every day fight when she said:
“It’s easy to be sitting here in my happy place with amazing people and just talking and looking back and saying ‘we overcame so much’, and ‘we did it’. But then at the end of the day it’s me and I’m in my little house alone and I go to bed alone and think… I can be really happy when I choose to be. But I’m always sort of masking my inner deepest feelings. So now I’m here talking about [how] yeah I’m doing great and I’m embracing my new normal and I’m doing the things that I have learned to love. But secretly I’m also thinking, well, this whole situation is shitty and I’m just trying to make it better. But I really miss what I used to be able to do and I really miss my old normal and I really still struggle. So for me to be here and say like, ‘I’m this new and improved person’ its almost, I wouldn’t say a lie, but I’m putting this all together so much so that I believe it myself. And the only way that I sort of get through everything is faking it till I make it. So for me to sit here and say ‘well, don’t be in denial’, and ‘don’t do this’, and ‘try to do this’ is easier said than done. Those are the things I’m telling myself everyday.”
I think that the story she depicts here is more common than not among cancer survivors. This is Catalina’s cancer narrative, and though everyone’s experience is unique, there is this thread of similarity that I keep seeing in people as I talk to them about survivorship. And it is that the struggle following cancer is real. I hope to spread some awareness about this, and to shed light on what a real cancer narrative can look like.
Catalina is one of many cancer survivors that I hope to reach out to. Her experience along with so many others, including myself, have brought me to the realization that there is a great need for support and community among cancer survivors. I created Sofia Holub Wellness to share my experience and also the experiences of other survivors as we journey through life and embrace our new normal. Please follow along for the ride as I tour around and interview survivors and document their stories. May we all bind together in support of our daily choice to embrace our new normal. This is my movement, and I hope to gain and share as much support as possible.