When it comes to lung cancer, we know symptoms can be subtle. For marathon runner, Seán Kelly, his first warning sign came during a race in mid-November last year.
Struggling with his breathing, Seán finished the race 24 seconds off his target time. Whilst most people would dismiss this as just an off day, Seán knew this was unusual for him so when, a month or so later, he couldn’t catch his breath whilst out walking, he knew something was wrong.
“As a runner, I am in tune with my body so there were definitely alarm bells ringing,” recalls Seán. “But, at that point, lung cancer wasn’t in my head. Nor was it in the doctors who suspected asthma or a possible DVT.
“I went to A&E and had a chest x-ray. The results of which then prompted a CT scan. Whilst all this was going on, I was training for the London Marathon. My health was clearly deteriorating but I kept trying to fight through. Running was important to me, but I was pushing myself too hard and, as a result, I ended up in hospital.
“By this point, I was prepared for bad news. I could feel it. When I finally received my initial diagnosis, I was almost relieved. At least we knew what we were dealing with now.
But I wasn’t prepared for what followed…
“I had cancer in three places, including lesions on my liver. A few days later, I received a call from a nurse who bluntly told me that my cancer was terminal, and I’d have an appointment in 10 days. End of call. I was shellshocked, both at the diagnosis and the cold way it was delivered.
“It was an agonising wait for that appointment. We didn’t know what was going on, what our options were, or even if there were any. People around me tried to remain positive but I had to banish the cheer squad. I’m a pragmatic person. I needed to deal in facts not false optimism.
“At my appointment, I was told I had small cell lung cancer and given a prognosis of 10-12 months. I was open to clinical trials but there weren’t any open to me, so I was set to start on a combination treatment of chemo and immunotherapy.
“Just before I started my treatment, I ran my final Parkrun. I want to retire from running rather than it retiring me.
“It was incredible. 160 extra runners turned up to run with me and it was the 3rd best attended Parkrun. I ran in my England kit and my wife was waiting for me at the end. It was a celebration, just the way I wanted it to be.
Going nuclear
“Being as fit as I was, the decision was to go for the highest dose of chemo and immunotherapy. The first two sessions were ok but then I started to experience chronic pain in my ribs and my back. It was affecting my sleep and I soon ended up back in hospital.
“By this point, I’d had enough. I felt like I’d been left to deal with this whole situation with no support from the doctors. I was in tears. I’d had enough.
“This was compounded by another trip to A&E. I was around two weeks after the latest round of treatment, and I started to experience dizziness and numbness in my hand. After enduring an hour and a half wait in A&E, I was finally seen but only to be told soon after that I should just go home because they needed the cubicle back.
“I was in so much pain. I had to crawl off the bed all whilst reminding the consultant that I had terminal cancer. I was crying and felt utterly degraded and humiliated. In that moment, I wanted to die. I just thought if this was what the rest of my life looked like then I didn’t want to be here.
“It was then that we pressed the nuclear button and thankfully, things changed quite quickly.
“My new team rebuilt me. They identified that I was experiencing neuropathic pain and added a new drug to my treatment plan.
“It also transpired that the dizziness and numbness were due to a seizure caused by brain metastases. I had to stop the immunotherapy and am now on steroids to reduce the swelling.
A new purpose
“It been a very difficult few months, but you must keep going. I recently signed up for Roy Castle Lung Cancer Foundation Walk a Mile a Day in April challenge and this has helped give me a new focus and a reason to get up and get out, the way running used to. It’s a long way from the marathon running I used to do but it’s been really positive.
“It’s a 30-day challenge but I didn’t sign up until mid-month so I’m doing it in 14 days instead! My friends and family have laughed at that because it’s typical of me to find a new way to push myself!
“The challenge has helped me recapture who I am. After the diagnosis and lack of support, I retreated somewhat. I felt like I lost who I was.
“It’s taken time, but I’ve realised I can’t be that same person I was before I was diagnosed with lung cancer. However, I can be a version that’s still true to me. That’s what living with lung cancer looks like.”