I am Clair Marie and I have ALK positive lung cancer. As I never smoked this came as a massive shock to me when I was diagnosed in February 2022 at age 43.
I had been suffering with serve back pain back in December 2021 and saw my GP who referred me to a physio. They said it was muscle strain from my job in Early Years and that I needed to carry on with physical activity and complete exercises at home. At the time, I asked the question of cancer and was dismissed as ‘too young’ and not having any other symptoms. Trusting the professionals, I didn’t pursue my concerns. Over Christmas the back pain was so severe I was could hardly move from the sofa and had to lie down while my husband did everything. It was just such an awful time. I went back to the physio who gave me more exercises and advised seeing an osteopath. I did this; however, they made the pain so much worse, and I could barely walk.
During one of the early sessions, she clicked my back, and I am still convinced that she broke it.
In January 2022, I came down with covid, which turned out to be the thing that would save my life. My symptoms got worse, not better, I was finding it hard to breathe and also a lump appeared on my spine. Enough was enough, so I called my doctors surgery and explained that I urgently needed to see my doctor. The following day, I was at the doctors feeling so ill and in so much pain that my mum had to come with me as I could barely walk, let alone drive.
The doctor did an examination and asked a lot of questions. He wasn’t happy and sent me for urgent chest and spine x-rays. The x-rays showed shadowing on my left lung and breaks in my spine. The doctor wondered if I had been hurt or had an accident, I said no. I still wasn’t worried, but two days later I was being referred for a CT scan and also had a lung specialist nurse making contact.
I had my CT scan a week later, but when I was called back that same day by the lung specialist nurse asking me to come back in to see the consultant and to bring someone with me, I knew it was going to be cancer. Nothing however prepared me for what the consultant was about to sh. The CT scan had shown a mass on my left lung (4cm long) and I had tumours on my spine, ribs and sacrum. I had stage 4 lung cancer! I literally couldn’t believe my ears and had a panic attack there and then.
The rest has been a whirlwind of appointments from biopsies to MRI scans, the brain one being the scariest. I was started on a course of radiotherapy for the bone tumours, which was so painful and agitated the tumours. Imagine lying still for 20 minutes on a broken back!
In the meantime, I waited for my biopsy results to come back from the cells that had been taken from my lung. I finally got the call from my nurse who gave me the news that the tumour was ALK-positive and that while it couldn’t be cured, it was treatable, and I would be meeting the oncologist in a matter of days to talk about treatment options. Still in shock, I struggled to be happy that I had a mutation that could be treated, in my mind I still I had a life limiting illness that would never be cured.
I met with the consultant who put me on a targeted treatment drug called Brigatinib (180mg a day). The side effects have been up and down, the fatigue and diarrhoea being the worst.
I have definitely struggled emotionally, particularly as I have three children aged 16, 14 and 9. It’s very up and down and I am trying to roll with the bad days and expect the tears, and I am feeling much more positive than I was at the beginning.
I have met so many influential people over the past few months who have helped and supported me on my journey. I have a loving and supportive family and a special group of friends. I’m even working back as a learning support assistant part time and living my life. I try not to think about the future, just live in the moment as much as I can. Being diagnosed with stage 4 cancer has shown me and made me realise that life really is short and I’m going to spend it living not worrying about how long I have left.