We sat the children down and said ‘Daddy won’t be with us for as long as we were expecting’

Almost four years ago, IT executive Jonathan Muggleton, 48, spotted that a mole he had in his groin had started to change. A few weeks later his doctor told him he had mucosal melanoma, a very rare form of cancer. Jonathan lives with his wife Rebecca, 50, a financial director and their two children Amelia, 11, and Charlie, 9, in Bishop’s Stortford, Hertfordshire.

Jonathan says:

The worst part is the night before the results of a scan. It’s like waiting for my A-Levels, only far more terrifying as the information will change my whole life – even give me an indication of how much longer I have left. Though I mostly try to distract myself by playing with the children or going for a long bike-ride, at times it’s impossible to quell the spikes of anxiety. I’m often awake at 3am on results day with scenarios whirring endlessly through my mind.

Since I was diagnosed with cancer in 2020, I’ve been through this scan cycle about 25 times: biopsies, PET scans, and MRIs. One one occasion, the doctors were an hour late with their call, and I was beside myself.

Rebecca and I live our lives from scan to scan. Mostly, the news has been bad: the tumours haven’t shrunk enough, or a new one has formed. But after my last scan, which followed a course of immunotherapy, there was some atypically positive news. So you could say that right now I’m enjoying the calm between the storms.

I have mucosal melanoma, a rare and serious kind of cancer that develops in the mucous membranes. In February 2020 I noticed that a mole on my groin had suddenly grown and changed texture. At first, the doctors weren’t too worried, but by the end of the summer, they were concerned and sent me for a biopsy.

When I went to hospital to receive the diagnosis, the pandemic was at its height and Rebecca had to wait outside in the car. The consultant, flanked by a couple of medical students, told me I had mucosal melanoma; he didn’t use the word cancer, but I knew what he meant. My world turned upside down.

As I explained tearfully to Rebecca in the car afterwards, the disease was aggressive, as well as rare in men – 98 per cent of sufferers are women. In fact, because it is so unusual, there is very little data on it. But I googled and found out that only 14 per cent of people survive more than five years with this disease.

The whole thing was surreal and hard to process: I was young and fit – a keen triathlete, in fact – had no symptoms and didn’t feel ill. “Why me?” I thought. It wasn’t fair.

My gruelling treatment programme started in November 2020. To date, I’ve had six operations including a ground-breaking surgery to remove a tumour on my oesophagus, which will be shown in July in the Channel Four series Super Surgeons. I’ve also had two courses of immunotherapy, and have been on a clinical trial. It’s been a painful and exhausting rollercoaster.

For much of my illness things have looked bleak and though I’m going through something of a reprieve right now, we don’t know how long this period will last. It was only in April last year that I received a letter from my consultant saying I wasn’t expected to last 36 months, so I know that the prognosis changes all the time.

Having a life-limiting illness has completely changed my view on the world. I’ve been to some very dark places, but have learnt they don’t do you any good. Ultimately, I have told myself there is no point in worrying about things I can’t control.

I no longer care about “stuff”, but the people around me. I always think “this could be my last birthday/ Christmas/ summer” and so I’m going to make the best of it. When we were in Rhodes last year, for example, I got everyone up at 5am to watch the sunrise. I take 50km bike rides in the Hertfordshire countryside, looking at the hares and the deers. One of the strange things about this cancer is that I have never had a day feeling ill from the disease itself, only from the treatment.

No-one – not even the world experts – knows what the next phase will bring. So I’m constantly preparing for a day when I might not be here. I write myself notes for my children to read, often in the middle of the night, in bed, from my iPhone.

I’ve made a list of my ‘Desert Island Discs’, which include Lose Yourself by Eminem, and The Chain by Fleetwood Mac. I’ve written about films I want to watch with the children when they are old enough, such as Platoon. I recall our family trips to Cornwall and tell the kids about my favourite books like the Complete Works of Sherlock Holmes. It can be upsetting, but I find this therapeutic.

While for now the news on my illness is relatively positive, we are planning ahead. If the tumours start to grow again, the only option left is a protocol called TILs, a bespoke treatment where the cells of your tumour are harvested and reintroduced into your body after chemo, in an attempt to cure you. But this is not available in the UK: I need to raise £350,000 to have it done in the United States.

My next scan is in August, so I have a few weeks before the anxiety begins again. I know I’m not out of the woods. But there’s no point in dwelling on the what-ifs: I’m going to enjoy this summer with my family and friends, and appreciate the gifts of life that are all around me.

Rebecca says:

Where Jonathan is always positive and upbeat, I’m the opposite – I am constantly expecting the worst-case scenario. I’ve prepared spreadsheets for the time when Jonathan might not be around; from how I’ll fund the children through university, down to details like how I’ll pay for driving lessons.

As a couple, we are very good at talking about the medical and practical stuff, but not so much the emotional stuff. If one of us gets upset, we take ourselves into the other room, because we know that if we start crying, we won’t stop. It’s possible Jonathan only has a limited amount of time and we don’t want to spoil that by being sad.

Even so, there have been difficult moments during treatment cycles where I’ve had to rush Jonathan to A&E in the middle of the night: his temperature is too high or his heart is beating too fast.

The children were five and seven when we found out Jonathan was ill. We told them he wasn’t well and that he needed an operation but we didn’t say the word ‘cancer’. We knew they would associate it with death, as my father had died of a brain tumour and Jonathan’s uncle died of bowel cancer.

But last year, when the prognosis looked bleak, we did sit them down and say that daddy might not be with us as long as we were expecting. They cried for 10 minutes then said: “so, what’s for dinner” and “when can we go trampolining?” As kids always are, they are so resilient: though they show flashes of amazing insight. Charlie once asked me if this was like a boxing match, with Daddy in one corner and cancer in the other.

While the news from Jonathan’s last scan was encouraging, we know the reprieve could well be temporary. Hence, it’s vital that we raise money in case we need it for the US treatment. There’s always a sense that things are too good to be true, and we have to plan for what might be around the corner.

As told to Miranda Levy

Jonathan’s story features on the next episode of Super Surgeons 2 on Channel 4 on July 9. He also as a GoFundMe page for his treatment.