When Simon Tilling from Warwickshire was diagnosed with metastatic lung cancer in October 2022, he was given, at best, two Christmases. But after having various types of chemotherapy, Simon is looking forward to celebrating his third Christmas with his family.
“Looking back, I now realise my symptoms started around two years before I was actually diagnosed.
“I was feeling extremely tired. I’d get home from work, have my tea and then fall asleep on the sofa by 7.30. I just put it down to work. I’d recently changed jobs and had more responsibility, as well as a longer commute, so it made sense that I was tired.
“It was funny to begin with. My wife and daughter had this extendable finger and whenever I dozed off, they’d poke me with it.
“But the novelty soon wore off and the tiredness started having a real impact on my life. My wife got very frustrated as I didn’t have any energy to do things together. At this point, I’d also started to have some chest pain and an ache in my shoulder.
Going the doctors
“I went to the doctors on several occasions. I had an ECG which came back fine, and that was kind of it. There wasn’t any real investigation. The doctor put the chest pain down to indigestion and suggested I took vitamins to help boost my energy.
“A few months later, I got Covid and was blue lighted to hospital. I had a chest x-ray, and my lungs looked like ‘two big bags of cotton wool’. Knowing what I know now, I think the cancer was there then, but it was masked by Covid. I didn’t have a CT scan. It was too busy.
The fatigued continued. I saw a doctor about something else and mentioned how tired I was but just felt I was wasting their time. After that, I just accepted this was how life was now… until August 2022.
“I was on holiday in Turkey and became very unwell. I also passed blood in my stool so as soon as we got home, I went to the doctor. I was sent for an endoscopy and that’s how they found the tumour on my colon.
“A subsequent CT scan then confirmed I had multiple tumours in both lungs and two tumours on my liver. The prognosis was not good. Doctors said I had two Christmases at best.
“My health deteriorated significantly after my diagnosis. I started on chemotherapy and after the first treatment, I was in bed for nine days. I was incredible weak and needed a wheelchair. I think that’s when the reality of the situation truly hit home.
“But I’m a resilient person. I carried on with treatment and things got better. I even returned to work and continue to work now.
Treatment
“In total, I’ve had around 40 rounds of chemo, and two or three different types. Each round lasted around 4-5 hours. A pump then administered further doses at home for 48 hours.
It was a real belts and braces approach, but it was working. When I was first diagnosed, my carcinoembryonic antigen (CEA), which is a protein that indicates the presence of cancer, was 9000. After a few months of treatment, this got down to 5.
“That level of chemo is obviously going to come at a cost, and I’ve had a lot of side effects. My hair thinned and I lost my eyelashes. I suffered with nausea after each treatment.
“I also lost the feeling in my fingers and toes. I have constant pins and needles, which has impacted on my fine motor skills, and I’m severely affected by the cold. But you learn to adapt, and I now have a fine array of gloves and thick socks (so you know what to get me for Christmas!).
My story
“I see my diagnosis like a book, and I am still on chapter one. Chapter two is when there are no more treatment options and chapter three is hospice care.
“Six weeks ago, I nearly turned the page to chapter two. My CEA was back up to 1600 and my latest scans showed my lung and liver tumours were growing again.
“But then plot twist! A new treatment called Bevacizumab was approved. I’m now taking this in conjunction with chemotherapy tablets so I’m sticking on chapter one for now and looking forward to my third Christmas.
“And who knows, hopefully there will be more plot twists and new treatments and the Christmases will keep on coming.”
