Lung Cancer Survivor Shares What She Wishes She’d Known Sooner

Terry Gillespie, a lung cancer survivor and patient advocate, reflected on what she wishes she had known at the start of her cancer journey.

According to Gillespie, one of the most difficult and unexpected challenges was how others reacted to her diagnosis, often distancing themselves out of fear. She said patients can internalize this abandonment and blame themselves, which adds emotional pain to an already overwhelming experience.

She also spoke about how hard chemotherapy was, both physically and emotionally. While her oncologist warned her about hair loss, she wasn't fully prepared for the toll chemo would take or the changes to her cognitive abilities. She recalled struggling with memory and speech and said the experience was far more difficult than she imagined.

Ultimately, Gillespie emphasized that cancer is a journey no one can truly be prepared for. The shock of diagnosis can make it hard to process information, no matter how well-meaning or thorough the guidance may be.

Transcript

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, people leave 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. I don't think there was much more they could have done.

Transcript has been edited for clarity and conciseness.

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