When doctors diagnosed Kerrie with lung cancer, they told her she had two to five years to live. She has now passed the five-year mark, feels well, and feels more positive than she ever imagined. She has not needed active treatment since September 2020.
“I think many of us have a very vivid picture of what we expect someone with lung cancer to look like. They’d be very frail or losing their hair. They would look ill.
“I don’t look ill and, most of the time, I don’t feel ill. That’s one of the biggest surprises for me. Well, other than having lung cancer in the first place. That came as the biggest surprise of my life.
“We were out for dinner for my daughter’s birthday, and I noticed a lump in my neck. It bothered me. It didn’t feel right so the next day, I booked an appointment with my GP who referred me for a chest x-ray and a neck specialist. Two weeks later, my life changed forever. I had lung cancer.
Misunderstanding around palliative care
“When my oncologist referred me to palliative care, I went numb. I thought that was it. It felt like they were sending me away to die. I now understand that palliative care is very different to end of life care – but I really wish they’d come up with a new name for it!
“Palliative care for me was a treatment regime of immunotherapy and chemo. The aim was to remain on this treatment for up to two years but after eight rounds of treatment, I had to stop.
“My immune system had gone into overdrive and caused ulcerated colitis, an inflammatory bowel disease that causes inflammation and ulcers in your digestive tract. The colitis took around a year to subside, even with a very high dose of steroids and two infusions of infliximab. Doctors then told me I couldn’t resume my lung cancer treatment because it was too dangerous.
Not on active treatment
“Once again, it felt as though the ground fell away beneath me. The treatment had reduced my tumour by about 85% so the fact that I could no longer have it was terrifying. It felt like a death sentence all over again, thinking my cancer was still there and nobody was doing anything.
“My oncologist assured me that she has other patients that also had to stop treatment and remained stable a couple of years down the line. Despite this, I still expected the worst. So when my first follow-up scan came back stable, I felt relieved, but the nagging feeling didn’t go away.
“Another three months passed. Then another and the scans were still ok. I was starting to feel a bit calmer, but certainly not complacent. I think that fear, that scanxiety, will ever go away.
Finding hope with Roy Castle Lung Cancer Foundation
“I was just 45 when I was diagnosed, and I felt very alone. Roy Castle Lung Cancer Foundation helped me realise I wasn’t.” Through them, I could find other people like me – similar in age and experience.
“Hearing stories from people like me gave me real hope. That’s why I shared my story through the This is Lung Cancer campaign. I wanted to pass hope on to someone who has just been diagnosed.
“When I was diagnosed, I knew very little about lung cancer. I didn’t realise it could be driven by different genetic mutations, or that treatment could be tailored to improve someone’s chances. I also didn’t think younger people got lung cancer, or that survival was even possible. But here I am, more than five years on. The cancer is now sleeping, and I hope it stays that way.”
“In the early days, my hopes were short-term: seeing Daisy take her driving test, turn 18, maybe making it to a family trip to Hawaii. Those milestones felt like huge goals because of the prognosis.
“Now my hopes go far beyond that. I hope to see Daisy married one day (if that’s what she wants), settled in her own home or travelling the world. I hope to meet my grandchildren – one is already on the way in Australia, which is beyond exciting!
“And I hope more people come to understand that anyone can get lung cancer – and that more funding means more treatment, more progress, and ultimately more life.”