Survivorship: What’s Next?

— Categories: Ependymoma Community     Posted on January 13, 2021

Adam Holland writes about his experience moving forward after his diagnosis with ependymoma. He reflects on all that he has gone through and provides insight into the process of accepting his new normal. In this blog article, Adam reminds us all of the power of telling our story.

“We don’t need to see you anymore.”

The words you longed to hear since you first heard the word “cancer” are now the words, to a certain extent, you dread. The words pierce to the depths of your soul in this moment, words of joy, but also words of wondering what’s next, what does life ahead hold.

Your doctors, the nurses, and support staff have become friends and family, and they will always hold an incredible place in your heart, but saying goodbye to the them, no matter how hard it is, is a part of healing. It’s as if those words open a new chapter in this journey with cancer, with ependymoma. 

During my fight with ependymoma, surgeries, radiation, chemotherapy, and the many tests and procedures that were a part of it all, I imagined that I was in a storm at sea, alive, but struggling to survive, not knowing when the storm would calm or when life would return, whatever that would be like. And then in these moments of deep gratitude for my support team I realized the storm was over, the calm had come. For so long I had imagined myself in this moment of healing standing on the beach in a haze, slowly trying to understand what had happened, trying to understand even the life happening around me, families enjoying a life I felt like I had not seen in a long time.

I don’t know about you, but I have not really ever had to start life over again. It was hard to think that my battle and chapter with brain cancer was over. It was a new life and journey, a new chapter. I called it a “new normal,” but the “new normal” seemed more difficult than the storm itself, harder to understand, and accepting that the storm was truly over took longer than I had anticipated. How does one come back to life from this? What does life look like?

There is an answer to that question, but I must take a moment and go back to the Fall of 2014 as I finished my treatments. My church made a short video of my life story, focusing on the cancer. I ended it declaring that during my cancer, “I had lost everything ... but my faith.” I truly felt that I had lost everything at the moment, but the truth as I recovered throughout 2015 and into 2016 was, I hadn’t lost a single thing. My house, possessions, and job were still there; and most of my friends and family walked this cancer journey with me weekly, if not daily. I ended up with deeper, more abiding relationship than I had before. 

As much as my external life hadn’t changed, the reality was that I had changed, and there was no way I could return to the life I had before, because I wasn’t the same person. Life had essentially paused while I went through ependymoma, but I hadn’t and while life remained the same, I wasn’t the same person that began this journey with ependymoma. This is an odd thing to say, but I consider my cancer the greatest gift I have ever received, aside from my faith. It’s so unnatural and even might be considered by some unnerving to say that cancer was the greatest gift I have ever received. The reality is, it wasn’t the cancer that was the greatest gift, but what the cancer brought that was the greatest gift. The gift of perspective and purpose, particularly perspective and purpose in life. It was as if I was looking at the world through a new set of eyes. 

As I started a new life, having paused the world for a year or so, I realized that I had a story to tell, a story to help others in their own storms of life, not just cancer; a new perspective to look at life differently, to hold onto what really matters and let go of what doesn’t. You and I, as cancer survivors, and truly cancer warriors, have an opportunity through our unique challenges to help others understand what life is really about, what’s important, and how can we live a life with a new perspective.

This new life started as I had imagined in the storm, that I was standing on the beach, bruised and battered from the storm, but alive, and I knew the worst was over. For me, I had to write and what I wrote in the storm became my first book. This was my way of sharing what I had gone through with others, to help them on this harrowing journey of life. You might possibly do something else like write your own book, tell your own story to others, reach out to others who are in their own storm, maybe even become an ependymoma advocate, a public speaker, there are far too many opportunities for you now to list here. But this cancer was meant to be a gift, meant to help you see what life is all about, the joys and hardships we face, and the people we journey with throughout life.

The reality of our survival is that we didn’t survive just to survive, but in surviving we were given purpose and perspective beyond ourselves. It truly is a wondrous gift. For me, as I open this new chapter of life heading out into a “new normal”, I think of how my perspective enhances the beautiful life I have ahead, and how that beautiful life is going to make others’ lives better. I hope you have the opportunity to discover this as well.

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