Joanne has been living with stage 4 small cell lung cancer for nearly four years. She shares her experience – which she describes as ‘a good one’ – as part of our latest lung cancer awareness campaign, Let Go of the Labels and urges others to act on symptoms as soon as you spot them.
“I was diagnosed with small cell lung cancer on 11th February 2021. I had been feeling unwell for a couple of months. The best way I can describe it is I just wasn’t feeling myself.
“I was getting very short of breath, had horrific headaches and pains in my chest. I thought it was a viral infection so I just kept going but a few weeks later, I was feeling much worse so went to the doctor.
“The doctor checked me over. They listened to my chest, which was a bit crackly, so gave me antibiotics. I started to feel a bit better.
“But it didn’t last. I soon started to feel just as bad as before and then I noticed my voice changed. It sounded like I had laryngitis. Again, I was just going to ride it out but my brother insisted I call the doctor again.
“The doctors immediately sent me to hospital. Within a matter of hours, I had had blood tests and a chest x-ray and told there was a mass in my left lung. The tumour was also resting on my vocal cords, which is why it sounded like I had laryngitis.
First symptoms, with hindsight
“Looking back now, my symptoms may have first started a couple of years earlier. I think back to 2018 and that’s when my breathing problems started.
“I was still smoking at the time though. We all know smoking isn’t good for us, so I just presumed the breathlessness was being caused by that.
“But I think this is part of the problem and why so many people with diagnosed with lung cancer are caught late; we either ignore symptoms or put them down to other reasons, especially if we have smoked.
Hopes dashed
“About a week after getting the x-ray results, I had a PET scan and biopsy to confirm the true extent of my diagnosis. It was stage 4 small cell lung cancer, with emphysema.
“I just froze. I knew stage 4 meant serious stuff.
“I remember asking my lung cancer nurse, Helen and the other consultant if I could have surgery. My dad had had lung cancer and he’d had an operation to take part of his lung away.
“Helen replied and said ‘I’m so sorry’. She explained that I was at the stage when an operation was no longer an option. ‘It’s too aggressive,’ she said. ‘We can only treat it’. I just broke down.
Hope restored
“It was impossible to see at the time but, even though they couldn’t operate, my lung cancer was still treatable.
“Within three weeks, I started chemotherapy and immunotherapy. I was very nervous, especially because Covid restrictions meant I couldn’t have anyone with me. I was entering the unknown and the pandemic was forcing to me to do it alone.
“But the team at the hospital was amazing. I met my consultant, Dr Clara Namelo. She explained everything to a fine art, and I felt so much more relaxed.
“I can’t praise my lung cancer team enough. Dr Clara was so caring and no matter what I needed to speak about, she was always there at the end of the phone or over email.
“Her dedication to her patients has meant everything to me. She kept me going and helped me believe that I will get through this. For that I am forever grateful. I even got a tattoo of her initials. That’s how much she meant to me.
Side effects of treatment
“I won’t lie, my treatment wasn’t smooth sailing. I did have a reaction to the immunotherapy. It put my body into spasms so I had to take medication before each treatment cycle.
“Eventually, I had to stop the immunotherapy as the side effects got too bad. The treatment, combined with my emphysema, was making my breathing worse.
“The chemo also caused my hair to fall out. That was heartbreaking, waking up in the morning and seeing the hair on your pillow. I could have had a wig but I decided not to. That was my choice and made me feel like I still had some control over the situation.
The power of positive thinking
“I now approaching four years since I was first diagnosed, and my cancer remains stable.
“I’ve obviously had bad days. It’s especially frustrating when I can’t do the things I used to do but I’m lucky that I have incredible support from my family and friends.
“You have to hold on to the positives. It is what it is. There’s nothing I can do but keep going.
“We have a beautiful world out there and we must live life to the full because nobody knows what’s around the corner.
“We have a fantastic health service that’s there for all our needs. Yes, there are waiting lists after waiting lists but we’ve got to be thankful that we have all these fantastic doctors, consultants and nurses to help us get better. Where would we be without them?”
Joanne shares her experience as part of our Let Go of the Labels campaign for lung cancer awareness month.