I didn’t realise I had any symtoms, I’ve had a cough as far back as I can remember, my asthma nurse had tried various pumps, but the cough continued, it was put down to anxiety or allergies. I had just gone back to work after working in a school kitchen for an hour or two a day for years. I was in a kitchen in a nursing home, it was busy and heavy work, I loved it, but I was exhausted and was rapidly losing weight, then a lump appeared near my collarbone, by husband and my friend told me to get it checked, but I was so busy! Working and caring for my step granddaughter, running the house and looking after my mum, and my 3 adult children!
When I did get it checked about a month later I fully expected to be told not to worry. I saw a locum, and he was worried, he referred me for blood tests, an ultrasound and a chest xray, the following day all the appointments were made, when I had the ultrasound he radiographer found another lump on my thyroid and immediately biopsied both the thyroid and the collarbone lumps, my husband held my hand and looked worried, but I was still sure I was nothing, then I had a chest xray, a week later I got the results, I definitely had cancer, but they weren’t sure where, they were testing for thyroid cancer with spread to the lung and I shouldn’t worry as its very curable…..
Then in a few more days I had a CT scan and an appointment appointment with a respiratory consultant who diagnosed me with lung cancer, incurable, inoperable and life limiting, but there was treatment available. I was devastated and terrified, i didnt want to look at iages of it or know what stage it was or how long i had left, i didnt want to talk to anyone. I just wanted to hide away. I then had a fine needle biopsy to check for mutations and to work out a treatment plan. It was about 6weeks from my diagnosis that I had an appointment with the oncologist, by this point my eldest daughter had discovered she was pregnant with twins, I was very depressed and thought I would not be able to support her the way I wanted to. The oncologist was just lovely and knew how scared I was, she told me it was good news that I was ros1 positive and there was a newly approved treatment available for me to try Entrectinib. I could start the next day!……..
So I took the first pills on 9th December 2021, my youngest daughter took a day off work to be with me, armed with a sick bucket, antisickness pills and a list of tv shows to watch, and simple meals she could cook for the family, but thankfully I was fine, and 3year and 2 months later I still feel okay! The Entrectinib had shrunk and kept the cancer stable, I’m on my 4th oncologist, my twin granddaughters will be 3 in June, and I have looked after one or both almost every day since they were born, I’ve also seen 2 or my children get engaged, one graduate and two leave home, and I celebrated my 50th birthday wth a party! All milestone I thought I would never get to see. I won’t pretend everything is great, though. I’m still quietly terrified, I have my next scan in 3 weeks, so I’ll be praying and keeping my fingers crossed that all is still okay x
