Duncan's Story

It’s 2nd July 2019 – I’ve just finished presenting to 40 customers in central Birmingham and have zipped back up the motorway to my home in Cheshire. No rest for the wicked, though; I still have work to do, so I say hi to my wife briefly and vanish into my office to catch up on emails. About fifteen minutes after sitting down, I start to feel funny – my tongue starts to feel thick, and I’m struggling to talk – I tell my wife, and then everything goes crazy! I lose control of the left side of my body and start having spasms – I don’t know it at the time, but I’m having a brain seizure. Fifteen minutes later, I was sitting on the sofa feeling dazed and a bit scared, talking to paramedics – my wife thought I was having a stroke and called an ambulance.

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What followed was a five-week whirlwind of hospital stays, appointments with consultants, scans and biopsies, culminating in brain surgery to remove a large (three-centimetre) tumour and a diagnosis of stage IV ALK+ metastatic non-small cell lung cancer. I’d gone from being a reasonably healthy forty-nine-year-old to recovering from major surgery and being told I had an incurable disease all in the space of a few weeks.

It was at this point that a Macmillan Nurse at my local hospital told me about the ALK Positive charity and support group, and that changed a lot – whilst we can and should talk with our friends and family about this illness, there’s only so much they can empathise with or that we should expect them to, plus there’s nothing like the bluntness and humour of a fellow patient to put things in perspective and cheer you up! Anything you are dealing with, one of the other members has probably already lived through, and that shared experience helps to make sense of this horrible disease.

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When asked to write my story, I read all the other stories already published on alkpositive.org.uk. What I realised is how lucky I am – diagnosis and treatment have improved a lot in ten years – from the moment I knew I probably had lung cancer to my diagnosis with ALK+ took less than four weeks – this meant I got to avoid (for the time being at least) going through radiotherapy, chemotherapy, and a major surgery to remove part of one of my lungs, and it meant that just three months after that first seizure I was back at work full time.

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It's now over 4 years later. I continued to work for 3 years before taking the opportunity to retire early. I’ve been on the targeted therapy drug alectinib since August 2019. After my surgery, I’ve had no further tumours in my brain, the tumours in my lungs have reduced to just scarring, and the indication of cancer in my lymph nodes has also cleared up. I have a few minor side effects from the drugs, but nothing that stops me from leading a relatively normal life. My interaction with the healthcare system now consists of a monthly blood test and telephone consultation with my lung cancer Clinical Nurse Specialist at The Christie Hospital in Manchester. I also have a CT and MRI scan every 3 months to check for any signs of progression. To my great relief, despite the odd minor hiccup along the way, I have remained entirely well.

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There’s a reason why cancer is known as “the emperor of all maladies” – when you get diagnosed, it hits you like an express train, and it’s so tempting to curl in a ball and retreat from the world. I’m not someone who is convinced that a positive and bright attitude makes any material difference to how your body fights this disease, but I do think that it will make the time we have left a much more pleasant experience for those of us with cancer and our friends and family. While I know it is likely cancer will return at some point, I now have real hope that I will get to enjoy a longer life than I ever expected when diagnosed, and who knows, maybe I’ll be part of the first generation that sees this disease become chronic rather than terminal?