To tell my whole story, I have to go back three months before my terminal cancer diagnosis. I had been struggling with crippling back pain, and after another night with no sleep, I made the decision to visit an urgent care centre on a sunny Saturday morning in April 2023.

After waiting for seven hours, though, I’d had enough. I was ready to leave. The idea that I might have cancer or even that it might be anything remotely serious never even entered my mind, and it was my wife who convinced me to stay. I sometimes wonder what would’ve happened if she hadn’t because what happened next possibly saved my life.

When my name was finally called around an hour or so later, the waiting room was almost empty, and I find it so strange now to think that I had been considered such low priority. Sometimes, I tell people I went in with lower back pain and came out with cancer!

Even when the nurse started examining me, it all felt very casual. I remember thinking that she looked tired as she asked routine questions about my symptoms (“Where does it hurt,” “When did the pain start”). Then, she asked me if I had any other symptoms.

As it was, I’d been having abdominal pains on and off for the past three years which I’d already seen my regular doctor about, many times (she had eventually put it down to a food intolerance). So I don’t even really know why I told her this. Certainly, I hadn’t been thinking about it, and I did say that I didn’t see how it could be related. Whatever made me say it, I’ll be forever glad that I did.

Still, another nurse might have thought nothing about it, I didn’t afterall, but after a moment of quiet, she told me that she would like me to go and see a doctor she knew in a nearby hospital for some urgent blood tests. It could be nothing, she said, but it was best to be sure. It could be nothing.

I owe a debt of gratitude to that nurse, and the doctor, who finally came to find me, sat alone with my wife on an empty hospital ward, some time after midnight. He’d been in surgery for four hours, during which time fear and doubt had definitely started creeping into my thoughts.

As someone who has always been fit and healthy, I had never stayed in a hospital before, but he said he wanted to arrange an urgent CT scan. There was that word again. Urgent. It could be nothing. And everything that happened next happened really fast.

Saved by the bell

First, the bad news. He didn’t use the ‘C’ word, but he said he suspected that I had lymphoma, which is a type of blood cancer. I knew that because one of my uncles died of lymphoma. He was 42 years old. The age I was then. We would need a biopsy to confirm, but I was told to expect the worst (it wasn’t the worst, that would come later).

After that, my disease accelerated quickly, and I was admitted into hospital on Tuesday, 9 May 2023. I had been having difficulty eating, and anything I did manage to eat would come back up soon after. I had lost my appetite and a worrying amount of weight. I felt weak, and I was in pain. I didn’t know it then, but I was told that my organs were beginning to shut down. Honestly. I thought I was going to die (and I’d find out later that the doctors thought I was going to die too).

So many things had gone right for me on the day I visited urgent care but now, things were only going from bad to worse and, when the biopsy results showed that, despite finding cancer cells in my lymph nodes, I didn’t have lymphoma, this meant that the cancer had already spread. But from where.

Without a primary tumour (cancer of unknown primary), doctors don’t know where a cancer has started and, therefore, how to correctly treat it. Instead, a team of doctors and other professionals meet and discuss the best treatment and care for you. Somehow, it was decided that I had testicular cancer – I’d later find out there was no great medical reasoning behind this, in reality they ‘hoped’ I had testicular cancer because most men survive their diagnosis. Not only that, but I would also later obtain a copy of the biopsy report, and the pathologist had stated that this was highly unlikely!

I’d already been in hospital for three weeks by this point, but there was no time to prepare myself for the treatment. On Sunday, 30 May 2023, I was transferred to a cancer ward to begin my first 21-day cycle of BEP (Bleomycin, etoposide and platinum), a particularly intense chemotherapy combination treatment that destroys virtually all cells in its wake, cancerous or not.

To put my situation into context, Dustin Diamond, who played Samuel “Screech” Powers on Saved by the Bell (one of my favourite tv shows growing up) died from a similarly brutal (and relentless) form of malignant cancer only three weeks after he was diagnosed. He was 44 years old. The age I am now.

There’s no way to truly describe how that chemotherapy made me feel. It was brutal. A traumatic experience. Also, the effects of chemo are cumulative. This means that, rather than my body getting used to the drugs that were being injected into my bloodstream, each infusion actually gets harder.

The only good thing I can say, what really kept me going, was that they told me that they could cure my cancer. When you have chemotherapy, it can be very normal (and understandable) to feel every emotion it’s possible to feel because you’re constantly wondering if the treatment will be successful and, well, your life literally depends on it.

For anyone unfamiliar with BEP, you have a combination of chemotherapy drugs injected into your bloodstream, usually for three or four treatment cycles (a cycle of treatment is the time between one round of treatment and the start of another), and each cycle lasts for 21 days).

Since these drugs are administered every day for the first five days, you are required to stay in the hospital and you have blood tests before, during, and after each treatment to  check your blood levels, liver function, kidney function… to check that you are still functioning as a human being. Further drugs are given on days eight and fifteen.

Anaemia (caused by a drop in red blood cells) is common, and during my third cycle, I had to have a blood transfusion. I still remember the look on my 5 year old daughter’s face who was visiting at the time. I lost all my hair, and I mean all of my hair (eyebrows, pubic hair… everything). I was sick, tired, and broken. And yet, lucky to be alive really.

Still, it bothered me that there was no tumour. My (then) Oncologist told me this was nothing to worry about, but I was still having difficulty swallowing, indigestion and heartburn, pain behind my breastbone and I was still losing weight (see below). Eventually, I managed to convince the doctors to do an endoscopy… and that’s when my whole world was really turned upside down.

Possible side effects of oesophageal cancer include difficulty swallowing, indigestion and heartburn that doesn’t go away, pain behind your breastbone, and unexpected weight loss so it’s important to get these checked by a doctor, particularly if your symptoms change, get worse, or do not feel normal to you.