21st June 2024

Seven years on from stage 4 lung cancer

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When Keith Johnson from Leicestershire was told he had stage four lung cancer, he didn’t think he’d wake up the next morning. But after an eventful seven years, Keith’s cancer is still stable…

“It all started on a bucket-list holiday in Italy in 2016,” recalls Keith. “I was climbing Mount Vesuvius but when I got to the top, I had really bad chest pains. I’d always been an active person, so this didn’t feel right for me.

“When I returned home, I went to my doctors who sent me for an x-ray. Then, just a couple of weeks before Christmas, I was diagnosed with stage 4 lung cancer.

“Given the time of year, I decided I wouldn’t tell my kids until after the new year. When I eventually did tell them, they had already guessed something was wrong. I’d describe myself as a gregarious person, but that period from being diagnosed and starting treatment was a pretty dark time. I’d go to bed and not expect to wake up again.

“But after a while, after proving myself wrong and waking up each morning, I began to feel like myself again.

“I had 20 days of radiotherapy and the 4-5hrs of concurrent chemotherapy, which I tolerated alright. I was just utterly exhausted. I felt like a cat, just wanting to sleep all day! After a couple of months, once the swelling had gone down, I had a CT scan, and I couldn’t believe what the doctors were telling me… the treatment had done its job and the cancer had gone!

I’m ALMOST ‘glad’ I had lung cancer

“Things settled down after that. I’d have my follow up scans, and everything was good. Then around three years later, I was diagnosed with prostate cancer.

“This was almost more of a shock than my original lung cancer diagnosis as I had no symptoms. I asked if the two cancers were linked but my doctors said they weren’t. The prostate cancer was graded as an ‘8’ and the nurses said I would probably die with it, rather than from it. I underwent a couple of years of hormone treatment, followed by more radiotherapy.

“It seems a strange thing to say but I’m almost grateful that I had lung cancer because if I hadn’t, I wouldn’t have been having those regular checks, so there’s a good chance the prostate cancer would have remained undetected, and I’d be facing a very different situation. I always think there’s a silver lining in every cloud and this was certainly the case here!

Wombling along

“When I got the all-clear, I felt it was time for me to regain some of my fitness – both physical fitness and mental. I started to go on long walks but wanted to do something that was a bit more social. That was when I saw an advert for volunteer litter pickers, so I signed up to become a ‘Womble’!

Since joining the wombles I have been one of many Leicestershire volunteers in helping to collect and remove over 170,000 sacks of litter across the county. I’ve also started my own group in my local area. Every Tuesday morning, our local team gets together and we’ve collected over 6,500 bags of litter.

“It’s really helped me to get fit again and helped me connect with new friends, which has also been so good for my mental health too, which obviously takes a bashing when you’re diagnosed with lung cancer.

Dealing with recurrence

“I’d like to say that is the end of my story but at the end of last year, my lung cancer made a comeback.

“I couldn’t have any more radiotherapy so this time around I received a chemotherapy and immunotherapy combination treatment for 3-4 months. I’m now on a maintenance treatment which I have every three weeks for an hour. The treatment is planned to last for two years.

“I’ve experienced a few more side effects this time round including eyes watering and nose bleeds but they’re all manageable, and whilst I wouldn’t say I look forward to my treatment, I do want people to know that the chemo ward isn’t as scary as you think.

“The staff are incredible – from the doctors and nurses to the sandwich lady! I find it difficult to eat when I’m there, but she makes a great cuppa and knows all the gossip!

There’s lots of chat and banter on the ward too, and a real sense of camaraderie. At my last session, I got chatting to a chap who was just starting his treatment. Understandably, he was a bit nervous and so asked me a few questions. I told him my story and just said that we can’t change this situation; we just have to make the best of each day.

“He saw me a bit later and thanked me. He said what I’d said had really cheered him up and he was going to try and take a more positive view in future, which really made me feel good and shows how you can get help and support from others on their cancer journey.

Staying positive

“That’s what prompted me to share my story with Roy Castle Lung Cancer Foundation. My nurse invited me and my partner to the charity’s information day and it was really useful. It was good to understand what’s going on in terms of treatments and care.

“I picked up a couple of information booklets too – one on living with lung cancer and the other on immunotherapy, both of which are well written and easy to understand. It’s really important to get good information from reputable sources rather than outdated statistics. Everyone is unique. Everyone’s cancer is unique and how everyone responds to treatment is unique.

“I don’t think many people would have expected me to still be here seven years after being told I had stage 4 lung cancer – the stats certainly wouldn’t!

“But here I am! It’s onwards and upwards for me, getting the most I can out of each and every day of my adventure.”