A woman suffering with devastating incurable lung cancer was given cough syrup by doctors to cure what they thought was a simple bug.
Alix Burnard, a sales manager from Newbury, Berkshire, developed what she believed to be an infection in March last year.
Unable to shake it off, the 29-year-old carried out numerous Covid-19 tests all of which were negative, so she brushed off her symptoms.
But in April things began to get worse for Alix and she began suffering from a swollen neck and was in serious pain.
“I thought maybe I had slept funny and started looking at chiropractors, but it became so swollen on one side that it was quite obvious that something more serious was wrong,” Alix said.
Alix also noticed her lymph nodes had started swelling around her chest and shoulders and that her collar bone was no longer visible under the swelling.
Concerned for her health, she knew it was time to contact her GP, who recommended a series of tests for glandular fever and also put her on antibiotics all to no avail, the covid-19 pandemic also meant many of her symptoms were not properly being identified.
She said: “I kept calling the doctors surgery when I felt unwell, but they only suggested cough syrup to help, and wouldn’t see me in the GP surgery because of Covid.
“By May 2021 I was struggling to breathe and couldn’t talk without running out of air. I was coughing up phlegm constantly, and couldn’t leave the house without a cup to cough up into.
“I had intense night sweats and was really struggling. I had lost so much weight that none of my clothes fit me anymore and I would often cough so much that I would be sick.
“I called the doctors again, and they asked me to come in to be examined and once I was seen, I was sent straight to A&E at my local hospital," she told told NeedToKnow.online.
Doctors initially feared Alix may be suffering from tuberculosis but testing ruled this out, she was sent home, but doctors had her return for a CT scan in June 2021, a scan that would finally get to the truth.
She said: “As soon as I’d had the CT scan, doctors started talking to me in a different manner, and it was then it was suggested that this was something more ‘sinister’.
“I spent a week living on the cancer ward, where I had a biopsy and a PET scan and was on several IV bags of antibiotics as I was suffering with pneumonia. It was during this time I was told that I had cancer.
“They weren’t sure of the primary location of my cancer, and were suggesting that it was likely lymphoma initially.
“I couldn’t believe what was happening to me - I wasn’t expecting any of this at all. I thought I had a chest infection, and I would get better. I was always really healthy, I’ve never smoked, rarely drink, exercise, and I eat plant based food.
“There was nothing in my lifestyle that would make me think cancer was even a possibility.
I spent the whole time I was in hospital on my own, I wasn’t allowed a single visitor because of Covid.
“I went through some of the hardest, most upsetting days of my life without a single familiar face, and I found it really hard.”
A biopsy later confirmed that Alix was suffering from adenocarcinoma – a cancer that forms in the glandular tissue.
She said: “I didn’t really understand what this meant, and it took another doctor to explain to me that I had incurable cancer.
“I was heartbroken at the news. I remember telling a friend and saying to her that I’m likely to die of this disease one day.”
She was sent home for two weeks, growing weaker from pneumonia as a result of the cancer in her lungs.
She said: “In those two weeks things got really, really bad – I was sleeping all the time and I was so weak I couldn’t really stand. My boyfriend had to carry me up and down the stairs because it was too difficult for me to do.
“I had to move my bedroom down a floor so that it was easier day-to-day. I would be coughing all day and all night so I was only sleeping in short bursts.”
It wasn’t long before Alix had to return to the cancer ward, where she would be told the full extent of her diagnosis.
Her oncologist confirmed the diagnosis to me: ALK-positive lung cancer – which had spread to her liver, lymph nodes, shoulder, spine and pelvis.
She started a targeted oral therapy and has had stints in the ICU relying on a ventilator at times.
Alix struggled to comprehend her new life, but did her best to enjoy what time she had, not even being able to plan more than a few weeks in advance.
She said: “My diagnosis came as such a shock, stage four lung cancer at 28. I was too unwell to process it at first, it took a while for me to recover from the pneumonia and for the oral chemotherapy to start to work.
“Eventually over time, I learned to understand that I am, and would be, living with incurable cancer. I would be too unwell to look after my dog, I couldn’t walk myself, let alone a strong bulldog.
“I would have to take time away from my job. I cut my hair in case I lost it due to treatment. I was still underweight. I looked different, I felt different – I felt like I had lost my whole identity to this diagnosis.
“I had to learn how to pace myself when I started using the stairs again, I was given physio instructions and felt like I was basically starting from scratch in terms of who I was and how I identified.”
As well as the cancer, they found several blood clots and DVT, including one in Alix’s brain, and she will remain on blood thinning medication for the rest of her days as a result.
Alix began a series of treatments all in the aim of slowing the spread and give her precious time, including oral chemotherapy and targeted cancer drugs.
She said: “In June 2022, I started crizotinib. I had a biopsy which found a MET mutation in my cells, which meant that this was the next treatment line to try before IV chemotherapy – which may or may not work for me.
“I can only hope that this gives me much more time than my previous two treatment lines. All I want is to stabilise my cancer and live my life as well as I possibly can.
“I have regular PET scans to check for cancer activity, so it feels like I have to live my life in very small segments - waiting to find out if I am OK to continue my treatment and trying not to expect bad news.”
Alix remains optimistic in spite of her incurable diagnosis, but advises others to never ignore a cough.
She said: “I’ve learned that in this situation, as another lung cancer patient put it, it’s not how long you live, it’s how well you live, and it’s so important to make the most of the life you have - even if it’s limited.
“I just want to spend time with those I love most, I want to travel, I want to be in nature, and I want to be as well as I can be.
"I think it’s clear anyone with lungs can get lung cancer, and if you have a persistent cough, please don’t ignore it. Speak with your GP and get it checked, it could save your life.”
