The Evolution of Survivorship After a Lung Cancer Diagnosis

For Terry Gillespie, a lung cancer survivor and patient advocate, the early days of her cancer diagnosis were consumed by isolation and the determination to make it through each day. It is through these experiences that Gillespie formed her definition of survivorship, though that definition has evolved overtime as she developed deeper connections and found purpose.

“My survivorship is living life every day, loving people every day, and giving back every day,” she explained.

In this candid interview with CURE, Gillespie reflected on how her definition of survivorship has evolved from a fight for survival to a life shaped by meaning and resilience.

CURE: Survivorship can mean something different to everyone. How do you define survivorship, and how has that definition evolved since your cancer diagnosis?

For me, in 2003, survivorship was just making it through the treatments, getting up every day, and suffering without much help. It was telling myself that this was not the end of my journey; this was not the end of my life. It was a very tough time because I did it alone. In 2003, my definition changed slightly, not a whole lot, but it's still surviving day by day, yet planning for a future.

I no longer think that the end of the day is going to be the end, whereas in the beginning, I felt, “Gosh, if I make it to the end of the day, I will wake up in the morning.” This is more about getting up every day and knowing you're a cancer survivor, but still living life as if you're not. My survivorship is living life every day, loving people every day, and giving back every day. That's survivorship now, and that's also dealing with the whole cancer thing.

You faced tremendous hurdles — from losing your lung to vocal cord damage and a grueling treatment plan. What parts of your life have changed most since cancer, and what has remained steadfast?

The only steadfast thing that has remained in my life is the fact that I have cancer. Everything in my life is different, and every day brings a new discovery and a new perspective. When I was diagnosed at 41, I was just changing my career, and that came to a halt. I was told I was going to die — well, not directly. They were going to tell me, but I said I didn't want to know because that wasn't how I was going to go. However, they told my family I was going to die in three months.

What changed me was the realization that you're invincible until you're not. My sense of invincibility changed. I knew I was no longer invincible, and it altered how I look at life. My voice changed. I used to have many friends, and cancer took a lot away, but I was very social. I'm not as social anymore, not because I don't want to be, but because if I try to talk loudly, it sounds like I'm yelling and being mean, so people misunderstand. I have another disability that's hard to overcome. So now, I try to let people get to know me first in a softer way, which is hard because it means opening myself up to more hurt.

I never push my ideas on anyone anymore. I used to get into arguments, but it doesn't matter anymore. I'm a lot more carefree. I now ride a motorcycle. When I was diagnosed, my husband spiraled and became an alcoholic, and then he passed away. I remarried a wonderful man; I got so lucky, I don't know how I could be so lucky.

Things are just... this is not how I envisioned my life, but it's not a bad life, you know? I keep telling people that it's a journey, and that's what it is. It's a journey; you never know. The best-laid plans don't always come to fruition. So that's how my life has changed. The only thing that has remained constant is the PET scans every year to remind you that you have cancer.

Looking back, is there anything you wish someone had told you during those early days (whether medically, emotionally, or practically) that would have helped prepare you for the journey ahead?

I wish somebody had told me how people would react to you. You're already going through what you think are the worst days of your life, and people abandon you, often out of their own fear. You tend to judge that as a reflection of yourself when it's not. Having that type of counsel, people are still afraid to discuss it because they feel like it's their fault. Unfortunately, I'm not a counselor, so I do my best. But that's something that needs to be addressed: the fact that when you're down and out, we believe you, and you don't understand why.

I wish people would have told me that the chemo journey isn't a single ride. Not that I thought it would be, but I didn't think it would be as bad as it was. Just somebody to walk with you. My oncologist back in 2003 tried to explain as best as he could what was going to happen. The only thing he kept telling me was, “You're going to lose your hair,” pretty much, because my hair was very, very pretty and long, and he said, “You're going to lose it; I'm preparing you.” It is very devastating when you lose your hair, I'm not going to lie. And when you wake up and you see it on your pillow, it's pretty freaky. So, you know, he prepared me for that so I wouldn't freak out, but not about a whole lot more.

I wish that people would have told me your cognitive abilities would be totally different, and sometimes you'd sound like a stuttering idiot. But, you know, that's pretty much it. I mean, it's really a hard journey that no one could fully prepare you for, where you fully understand while you're going through the diagnosis. Because when you're diagnosed, you go into immediate shock anyway, where no matter what people say, it doesn't compute, or you don't retain it. So, yeah, I don't think there was much more they could have done.

Transcript has been edited for clarity and conciseness.

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