Facing Lung Cancer with Grace and Self-Compassion

Self-compassion, emotional openness, and community support is incredibly important for patients currently beginning their cancer journey, according to Terry Gillespie, a lung cancer survivor and patient advocate. She went on to reflect on her own experience 25 years ago when treatment options were limited and side effects less acknowledged.

“Once you're diagnosed with cancer, lung cancer, it does something to you… if you [are prepared for the] ups and downs, like a roller coaster, and give yourself grace, the journey isn't as horrible as it could be. You make it through,” Gillespie explained in the interview.

Gillespie reflects on what she wishes she had known about chemotherapy side effects during treatment, offers advice for those newly diagnosed or starting their cancer journey, and more.

CURE: Do you feel that patients today are better informed about side effects than you were 25 years ago, and are there any you wish you had been warned about?

Gillespie: I wish I had known. Then again, I'm not sure it would have changed my journey, because at the time, that was the only option I had. Unlike today, where you have choices, and knowing the side effects really helps you decide what you can tolerate. Some of the side effects today are much more serious than back in 2003 [when I was treated]. I don’t think they cared as much about side effects back then—it was the only medication available, and whatever happened, happened.

[For example, I still have 'chemo brain' and] it’s not going away. I mean, come on, I had treatment 22, and I’m still dealing with it. Add aging on top of that, and it gets really bad.

Do you have any advice for someone who’s just been diagnosed or are just beginning their cancer journey? What is something you wish you had known?

I think the most important thing is to be kind to yourself. Lung cancer is a disease people blame themselves for, but if you're kind to yourself, the journey is a little easier. Don’t be afraid to talk about what’s bothering you. A lot of us hold things in because we feel like we deserve it. I never felt I deserved cancer, even in 2003. No one deserves to die from any kind of cancer.

[It’s important] to let people help you. That’s the hardest part: letting people in. I didn’t have help, and when I did ask, I didn’t get help. I think that was because of the [stigma] around lung cancer. Now people are more willing to help, but you still need to ask. You’ll get the support and resources you need.

Also, don’t go straight to Google when you have questions. No Google doctors; however, there are people on social media who are very knowledgeable, like groups such as Lung Cancer Longevity, Fight for Air, and others I can’t remember right now (thanks, ‘chemo brain’). Those communities weren’t around when I was going through it. Some programs even connect you with “angels” who can answer questions about side effects and support you emotionally.

Most importantly, just be kind to yourself. Love yourself. That’s all I can say. That’s what matters most.

You’ve become a powerful advocate through your work with a range of organizations, from federal agencies to groups like Imerman Angels. What continues to drive your advocacy efforts, and why is patient advocacy such a meaningful part of your life?

Well, without patient advocacy, we wouldn't have the new additional treatments that are so necessary. I don't believe we'd have as many survivors as we are having now, and it's very important to me because, like I said, I did it alone. My mantra was that nobody else was going to have to go through this alone as long as I was alive, that I would be there for anybody, and that's still the way I feel.

I feel passionate about research, because without that, we have no future. I feel passionate about making people feel they're worthy, because everyone's worthy, and it's just something that I feel compelled to continue in my journey in life, because I did it alone, and it's the worst feeling in the world. So, that's what it is. It takes a toll to do the one-on-one journey I did. So that's a rough road to travel, and I have to spread it out to save my own heart, because it gets hard.

You know, once you're diagnosed with cancer, lung cancer, it does something to you; it's more of a journey. If you make it a journey and know that it's got a lot of ups and downs, like a roller coaster, and give yourself grace, the journey isn't as horrible as it could be. You make it through.

Transcript has been edited for clarity and conciseness.

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