What it feels like: Living with lung cancer

People that know me go, “but you don’t smoke.”

Emma Jones 7 minute read December 29, 2020
Darin Diehl

A heart attack led Darin Diehl to a lung cancer diagnosis. SUPPLIED

When Darin Diehl, a writer and a father, was diagnosed with lung cancer, his initial reaction was shock and confusion. “But I don’t smoke,” he told his surgeon.

And while the connection between smoking and lung cancer is well documented — in the United States alone, 80 to 90 per cent of lung cancer cases are linked to cigarette smoking — there are many other risk factors, including secondhand smoke, radon exposure, family history and previous cancer treatment. And sometimes, like many other cancers, it just happens.

One of the biggest challenges of lung cancer is the misperception that people are to blame for developing the disease — a belief that contributes to feelings of blame and shame and often prevents people from seeking care. According to Lung Cancer Canada, the stigma also leads some patients to keep their condition a secret from their social circle, increasing feelings of isolation and stress.

The most commonly diagnosed cancer

Except for non-melanoma skin cancer, lung cancer is the most commonly diagnosed cancer in Canada and the leading cause of cancer-related death, according to cancer.ca. In 2020, it will account for 13 per cent of all cancer cases in Canada, and 25 per cent of all cancer-related deaths. The five-year survival rate for men is just 15 per cent, and 22 per cent for women.

Healthing.ca spoke to Diehl about how a heart attack and bypass surgery led him to a diagnosis of stage four lung cancer — all during the global pandemic.

It all began with a heart attack?

It started off in a really 2020 kind of way. In late May, after an online exercise class, I started experiencing chest pains. I thought it was just because of the strenuous workout. There was no clutching of the chest. But over the next few days, I was nauseous, and basically, not feeling well.

A few friends who are nurses told me that I should call Telehealth Ontario and have them take me through the COVID protocol.

The nurse walked me through all the questions and then at the end of the call, she said, “Listen, I don’t think you have COVID, but I think you may have had a heart attack. I’ve already ordered an ambulance for you.”

Neither my wife, my kids or I believed that I’d had a heart attack because I seemed pretty fine, but we were worried about COVID. At the hospital, I had a swab done right away. They also took some blood to check for some of the markers that could indicate a heart attack. Later that day, the doctor came back and told me that I had had a heart attack. A chest x-ray and scan determined that I needed an angiogram and bypass surgery. I actually ended up having a quintuple bypass which includes all five major arteries of the heart.

The imaging also showed some lesions on my lungs. During the surgery, the surgeon took one of the lumps out to biopsy. It turns out it was an adenocarcinoma, a non-small cell lung cancer, which is primarily a non-smoker’s type of lung cancer. Another scan showed there had been a bit more spread near the lump that they took out and it was in the lymph nodes. I had stage four lung cancer. The fact that the cancer is in both lungs is why it’s called stage four. The day I heard my diagnosis was probably the toughest.

What went through your head after hearing the ‘C’ word? 

First there was the initial shock — it’s just horrifying. Especially when I got the stage diagnosis. But then my doctor told me about some modern treatments, and I read stories about people who have extended their survival quite a bit because of them. The treatments don’t work forever; eventually cancer figures out a way. For some people, that happens in 18 months, other people have six years or longer — you just don’t know.

The only control you have, really, is to try and understand it better. There are many support groups that are specific to the kind of lung cancer that I have. Lung Cancer Canada is one resource — I’ve participated in some web information sessions just trying to learn as much as I can.

What was it like to be in hospital during a pandemic?

I ended up in the hospital for just over two weeks. It was difficult. My family couldn’t visit, although my wife was able to see me the morning of my surgery for about half an hour. My kids came to the parking lot outside my window with signs and stuff so I could wave to them.

In this era, we’re aided by technology, so there are video calls, but it’s lonely. Even though the nursing and medical staff were fantastic and very supportive, it wasn’t the same as having somebody sitting beside you who is family. That was tough for sure.

People often think lung cancer is only caused by cigarette smoking, but you don’t smoke.

It’s naturally one of the first questions that I get. People who know me say, “But you don’t smoke,” and then I have to explain that I have a non-smoking kind of lung cancer.

Lung cancer has a a bit of a stigma around it because of this association with smoking.  There’s this whole, ‘You did it to yourself’ sort of mentality. One of the biggest challenges is to educate and to get people to understand the different causes of lung cancer beyond smoking. Fundraising is also difficult because of that stigma.

What does your treatment regimen look like?

Given the bypass surgery, it was deemed not appropriate to operate or radiate. So as of August, I’ve been on this fairly new targeted therapy. It’s not a cure, but its job is to halt the growth and spread of the tumours. Every three months I will get a scan to check for progression. I had one in October and the next one is in January. There’s this feeling of “scan anxiety” when it’s coming up. You can’t help wondering what it’s going to show.

Cancer drugs aren’t funded in Ontario, which can make them pretty expensive to patients. 

The treatment is extremely costly — like, around $130,000 for a year. It’s not covered by OHIP, but there is a grant that I applied for. I needed to cover a deductible, which came up to about $10,000. I had some friends and former colleagues that started a GoFundMe campaign to help. That was really nice.

How has your diagnosis affected your family?

This has been very stressful on my wife and my kids, but they have been tremendously supportive. When I came home my wife and my younger daughter — who is still at home — became my nursemaids. They made sure that I stuck to the pill regimen, checked my blood pressure and tended to my scars.

What about you? How are you dealing with the fact that you now live with lung cancer?

I definitely feel stronger and confident with respect to my heart healing. In terms of the cancer, it’s sort of always there — but I’m not living that way. I’m taking advantage of the fact that I generally feel pretty good.

With the help of counselling, I am working on getting used to living in three month blocks while I wait for the next scan, without waiting for the next scan, you know what I mean? Like, focusing on living my life in the moment and then when it’s time get the scan, go do that.

Darin has also written a blog post about navigating the financial side of personal health crises.

If you or someone you care about is living with lung cancer, connecting with a support network can help to not only learn ways to better manage their health, but also share experiences with others. Some Canadian resources include the Lung Health AssociationLung Cancer CanadaWellspring, and Cancer Connect at the Canadian Cancer Society.


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