Debra Montague, Founder of ALK Positive UK
Improving the overall survival and quality of life of ALK-positive lung cancer patients across the UK
Having cancer has taught me I’m more caring than I thought. I used to have a reputation for being a perfectionist in work. I didn’t suffer fools gladly, but this experience has brought out a better side of me…
I was diagnosed at 6pm on Thursday, 6 October 2016. I felt fit and healthy, but I had a persistent, annoying cough. Twice I’d been told it wasn’t cancer, but further tests confirmed I was ALK-positive.
I became one of a growing number of non-smokers in the UK with a rare form of Stage 4 lung cancer. My prognosis was two to three years.
By Christmas, I’d given up my marketing job at a pharmaceuticals company. The targeted treatment I received put my cancer to sleep. (Eventually, it will become resistant; then you get progression. When that keeps happening, you run out of options.)
I felt much better in myself, however, and came to terms with things. I could have been wiped out in a motorway accident and I wouldn’t have had this second bite of the cherry!
I joined a worldwide support group, but some treatment options discussed weren’t available in Britain. I suggested to the UK members that we get together independently.
Eighteen people came to our first gathering. Having my consultant’s support as keynote speaker gave me permission to keep going.
I set up a Facebook group and a website. Using my marketing skills, I created a simple leaflet to help us with our mission to find all the other outpatient ‘ALKies’ in the UK. (No person should feel unsupported when they could be!)
Within 18 months, we’ve grown to 250 members; achieved charity status, with my dad as treasurer; and raised £40,000 in funds. We meet twice a year in person. Importantly, we’re engaged with NICE – supporting medicine approvals – and challenging the stigma that all lung cancer patients are smokers.
Cancer never has a day off. It kicks you up the bum when you’re not expecting it. On those days, the support group becomes like a second family.
Three years post-diagnosis, my philosophy is: ‘Don’t say no!’ I can’t change the end result, but I can have a ball along the way.