Patient stories

Duncan

It’s 2nd July 2019 – I’ve just finished presenting to about forty of my customers in central Birmingham and have zipped back up the motorway to 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’m 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.

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 have 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.

When I was asked to write my story I went and 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.

I’m celebrating my fiftieth Birthday in a few weeks – last summer I really didn’t think I would get there – I’ve been on the TKI drug Alectinib now 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 have also cleared up. I have a few minor side effects from the drugs, but nothing that stops me leading a relatively normal life. I now visit the Christie hospital in Manchester once a month for blood tests and to pick up another months’ worth of my medication, then every three months have a CT and MRI scan to check for any signs of progression.

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 just 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 for our friends and family. Everyone dies – the only difference for us is we have a bit more of a clue of when that is likely to be – how we choose to spend the time we have remaining is all that matters.

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ALK POSITIVE UK is a registered charity in England and Wales, registration number 1181171

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