From Diagnosis to Advocacy: A Lung Cancer Journey
Interview with Mel Erwin
In the midst of the global pandemic in 2020, Mel Erwin faced not one but two life-altering health crises. After recovering from COVID-19, she began experiencing debilitating symptoms that she initially attributed to long COVID. What doctors discovered instead was lung cancer. When she first heard those words, it was like "a meteor exploded in the back of our garden."
Mel's story challenges our ideas about lung cancer, particularly the assumption that it mainly affects smokers. As a non-smoking woman diagnosed with non-small cell lung cancer, her experience highlights an emerging women's health crisis that remains underrecognized.
[Kristina Adams Waldorf]: Hi, Mel. I'm excited to welcome you to the After He Said Cancer podcast. I'm Kristina Adams Waldorf, and we talk about cancer, grief, and caregiving. Please tell us a little bit about yourself.
[Mel Erwin]: Thank you for inviting me. My name is Mel, and I live in London. I'm 57 years old, and I was diagnosed with lung cancer in 2020 when I was 52.
2020 was not a great year for anybody. I got COVID-19 in April. I recovered and went back to work, but by June, I developed symptoms that seemed to be long COVID. My body was shutting down. I couldn't walk to the end of the street.
My general practitioner arranged an X-ray and blood test. Given the pandemic pressure on hospitals, it was incredible I got these quickly. He called the same afternoon and said my blood tests were fine, but they found a mass on my left lung. It felt like a meteor had gone off in our garden.
I asked if it could be long COVID. He said they needed to investigate. Then I asked the fateful question: could it be cancer? And he said, yes, it could be.
Over the summer, I had all the scans – CT scans, PET scans – alone during the pandemic. My loved ones couldn't come with me. I didn't see a single doctor face-to-face. In late August, a doctor I'd never met rang and told me I had non-small cell adenocarcinoma.
The mutation I have is common in non-smoking women and people of Asian origin. Many think lung cancer only affects miners or heavy smokers. But thousands of women and men, especially women, are diagnosed with non-smoking lung cancer every year. It's almost a women's health crisis.
[Kristina Adams Waldorf]: I know a few people with this same cancer. It's not as rare as one would think. And it feels so unfair.
[Mel Erwin]: Nobody deserves cancer. Even if you've smoked, you don't deserve cancer. The worrying piece is that when women go to their doctor with symptoms – shoulder pain, back pain, or a cough – because they don't smoke, the doctor might not order tests that could detect lung cancer. This is why 75% of people are diagnosed with Stage 4 (metastatic) disease.
[Kristina Adams Waldorf]: That's terrible! There's such an awareness piece needed for non-small cell lung cancer and many other rising cancers.
[Kristina Adams Waldorf]: Tell me about that early time after the diagnosis, and how you emerged as a writer and advocate.
[Mel Erwin]: It's taken a long time. I think my spirit stepped outside my body. I had half a lung removed, then 4 months of grueling chemotherapy that nearly killed me, followed by radiation.
My partner Sarah would drop me off for chemotherapy but couldn't come in. I felt like my spirit doubled – my soul remained on the pavement with Sarah while another version walked through the hospital door. I had to separate myself to cope with this unimaginable life event.
I didn't really cope, and it's only as treatment finished that recovery began. The end of treatment marks the beginning of recovery, and it takes time to realize your spirit and body are not yet connected.
I've done lots to help put myself back together: therapy, walking, Chinese medicine, acupuncture, and qigong. Through these experiences, I've begun to jigsaw myself back together. It's not one thing that brought me to this place, but many tiny strands making up a thread. It's like I'm pulling back the "Mel" I left behind.
[Kristina Adams Waldorf]: I understand this perfectly. Cancer shatters one into a million pieces. It's a fight to return to that person that existed before. What would you recommend to someone in a darker place with cancer or grief?
[Mel Erwin]: First, do whatever provides gentleness or comfort in that moment. What's ahead is unknown. What's behind is no longer available. All you've got is the here and now. For me, it was having a hot bath and watching terrible movies. I wasn't ready to talk to other people with cancer yet.
It was about getting through the minutes, not just the days. I felt the love of people around me like a bright light. Love always helps. As I say, "Love is the drug,” which is a great song by Roxy Music.
When you're ready to reach out to organizations that understand your journey, you're less on an island of crippling illness. You're in a community that shares the pain and the humor, and you can feel connected.
[Kristina Adams Waldorf]: Thank you so much, Mel. This was wonderful. I appreciate your time and all of your insights.
[Mel Erwin]: You're so welcome.
Thank you for being one of my readers. I appreciate you very much! If you’d like to support my work you can do so by:
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If you are interested in reading Mel Erwin’s Substack, here is a link:
https://melerwin.substack.com/about
Here are some of Mel’s favorite posts:
1. The story of my diagnosis: COVID, long COVID, a mass on my lungs and… a meteor lands in my garden. https://open.substack.com/pub/melerwin/p/2020-we-dont-know-what-to-do-with?r=1wcqmv&utm_campaign=post&utm_medium=web
2. What does it mean to live with stage 4 cancer? Are we about to pop our clogs? Find out how we stage 4ers truly live vibrant, joyful lives.
3. The end of cancer treatment marks the beginning of recovery. And it can be long and painful. https://open.substack.com/pub/melerwin/p/the-mystery-and-difficulty-of-cancer?r=1wcqmv&utm_campaign=post&utm_medium=web
If you would like to read the origin story and other posts from Kristina (After He Said Cancer), here are a few:
How It Began. This story is the origin of my Substack and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began
Dandelions in the Lawn. https://open.substack.com/pub/tigerinmykitchen/p/dandelions-in-the-lawn?r=1acedj&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true
The Day He Proposed. https://www.afterhesaidcancer.com/p/along-the-salish-sea?r=1acedj
Surrender. https://www.afterhesaidcancer.com/p/surrender?r=1acedj
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Amazing women doing amazing things for life here xxx
Thank you for this interview! As a friend and follower of Mel it is great to discover you too. I have learned that the main message is, don’t be alone. Friends from before stay alongside a new community that grows. If only my sister had had this opportunity when she had cancer thirty years ago as a young woman. She was so isolated and shut out from the “world of the well”. No one thought differently then. If she could see you now ♥️