When Ian was diagnosed with lung cancer, he pored over the real-life stories on our website to find someone like him who’d been through this.
Now, five years on, he shares his experience to give that same hope to others just starting their journey.
“It was March 2020 when I first noticed my cough, but you might recall there were lots of coughs going on around then!
“However, it wasn’t just a cough. I started to notice a gurgling sound, and when I slept on one particular side, I would do this weird snore. It wasn’t bad, just odd.
“Ironically, the fact that we had just entered lockdown helped me. I usually worked away in Birmingham, but the pandemic meant I was working from home. Had I not been at home, I’m not sure I would have gone to the doctors as soon as I did.
“The doctor initially prescribed me an inhaler, then a course of antibiotics. But when I returned a couple of months later with no change in my symptoms, they sent me for an x-ray.
“The x-ray showed something in my right lung, prompting a week’s worth of tests and a long three-week wait for my full diagnosis and treatment plan.
Armchair expert
“Waiting for the results was hard. You just go to the worst-case scenario, and you start to become an armchair expert. Problem is, everything you’re reading on Google is generalised, so I’d avoid doing that until you know exactly what you’re facing.”
“That said, searching for information was how I found Roy Castle Lung Cancer Foundation. I read the stories. I called the helpline, and I also joined the forum. It was all very useful and reassuring.”
“My test results confirmed that, despite my cancer growing for about a year, it was still caught early enough for surgery, which would be followed up with chemo, aimed to cure my cancer.
“I tolerated both pretty well. I did go through a fainting stage after surgery, which they think was caused by anaemia, but it settled down.
“As for the chemo, I’ve dealt with worse hangovers! I just kept saying to myself, ‘This is going to cure me ’. That got me through the tougher moments.
Trusting your team
“My lowest point, however, was when the consultant said somewhat bluntly that despite the treatment, I only had a 40% chance of still being here in five years. He did up this to 47% after a couple of months had passed!
“I understand doctors deal with facts, but I think there’s a better way to give that kind of information. Plus, he was quoting generalised stats. He wasn’t looking at me as an individual, considering my age, health or lifestyle. He was just citing averages.
“After finishing treatment, I had my first follow-up scan. It was a long, nervous wait, and I wish I could say it was the result we all wanted, but the results appeared to show some activity, and I was sent for a biopsy.
“I was also told that if the cancer had come back so quickly, then my chance of long-term survival was dramatically cut because it was clearly a very aggressive form of the disease.
“I had a biopsy, which is not a pleasant experience. However, there was some miscommunication, and the biopsy was taken from the wrong place. This was likened to amputating the wrong leg! I had to go through it all again.
“It was then that I made the decision to switch hospitals. Your relationship with your lung cancer team is really important, and I just wasn’t comfortable with mine, so I spoke to a doctor in my village, and they recommended an oncologist at Papworth. I called his secretary, and they got me an appointment. It was very straightforward, and I felt much better. Everything just felt more organised, which made me feel more in control.
All clear
“Thankfully, the repeat biopsy came back with no evidence of disease. My new team also tested it for mutations, which were positive. This is incredibly reassuring because I now know that if it does ever come back, there is a line of treatments waiting for me.
“Since then, my scans have remained clear. There was a slight concern about three years ago when doctors spotted something on a scan. It was small, about 1-2mm, but it turned out to be a little bit of mucus caught on the stitching!
“So here I am, five years on, and I thought it would be good to share my experience. I cast my mind back to how I was feeling when I was first diagnosed. I was floored, scouring the internet for information and hope and found Roy Castle Lung Cancer Foundation. Now I could give that same hope I got from reading about those who had been through it all.
“My experience might not have been straightforward. There were definite bumps along the way, but I’m still here – and that’s what counts.”