On May 18th last, soon after completing a paid internship at CNN London, I was given a diagnosis of Ewing’s sarcoma, an extremely rare bone cancer more commonly found in children and teenagers. The UK only sees about 60 cases a year.
A tumour had formed in one of my ribs and developed next to my right lung. It was enormous – 15cm (6 in) – even bigger than my heart, and I was not sure someone could survive something like that.
The strangest thing about it all was that I had no symptoms, was breathing normally and had played in a football match for CNN against The Guardian a few weeks before.
"It's the size of a melon," Dr Jeremy George, consultant chest physician, said, after looking at my CT-scan. He was kind but frank at our initial meeting in the London Clinic. "We don't like to see something that size in someone so young."
I was 24 years old, about to turn 25. I had finished a Master's degree in Television Journalism at City University London and was living on Little Newport Street, near Leicester Square, and working on CNN's World Sport programme. Several months before, I had met my Brazilian girlfriend, Elisa Brugger. Life was good.
My diagnosis changed everything. I was told I would be unable to work during the next year of treatment. I had six cycles of aggressive VIDE chemotherapy, six weeks of radiotherapy and five cycles of maintenance chemo, with major surgery and more chemo to come.
They say having cancer is the biggest battle you will ever fight. I lost my hair, eyebrows and eyelashes for five months, along with a great deal of weight. The VIDE chemo was so powerful that I had to spend days at a time in bed, resting. I developed mucositis, which is very painful, but fatigue and weight loss were probably the worst side-effects of my treatment, not pain. I had very little nausea.
The team said I was tolerating the treatment very well. And the tumour was shrinking.
In a fortnight I will be admitted to Royal Brompton Hospital to prepare for a five-hour surgery. Mr Simon Jordan, consultant cardiothoracic surgeon and chair of the cancer team, will remove what’s left of the tumour, along with one of my ribs and sections of two or three other ribs. Dr Stuart James will remove part of a muscle from my back and rebuild my chest wall, using muscle, mesh and even a bit of cement.
“You’ll be bulletproof,” Dr Silviu Buderi joked during a long consultation about my upcoming operation. I won’t be setting off airport security alarms or metal detectors for the rest of my life as I had feared. I’ll be in hospital for a week to 10 days. “We will not compromise,” he said. The team’s objective is to physically eradicate the tumour and leave clear margins. If all goes well, when I wake up from surgery, I will no longer have cancer.
It's all a long way from a healthy childhood on Achill Island, in Co Mayo, where my mother bought a house overlooking the sea when I was seven. Born in Dublin in 1991, I am the son of two journalists who met in New York, married in Boston and moved to Ireland in 1986. My dad died when I was young, my mum remarried, and I was raised by my mum and my stepdad, a New Zealand-born composer and classical pianist.
I attended NUI Galway, and these were some of the happiest years of my life. NUI Galway had a strong sense of community and shared welfare for its students, and emphasised looking after your physical and mental health. The doctors in London said that my youth, fitness and strength, and my positive attitude, are advantages in fighting this disease.
So how did this happen? My diagnosis came completely out of the blue. Last January, I noticed a small pain in my rib. It was very minor and I thought that maybe I had twisted something in the gym. I felt fine and continued to work at CNN. In April, I decided to get it checked out because it wasn’t getting any better.
My London GP sent me for a routine blood test and chest X-ray. The blood test was fine but the chest X-ray set alarm bells ringing. “Massive pleural-based right lower zone mass,” the radiology report said. “Urgent respiratory referral advised.”
When the GP rang me, I was sitting by myself in a cafe in Soho and I thought, “What the hell are you talking about?”
After that, it was shock after shock after shock. I remember ringing my mother while sitting under a tree in Leicester Square, near the Odeon, where Hollywood premieres are held, telling her that there was some kind of a "massive mass" in my right lower chest.
Luckily, I got a private appointment with Dr George and we put my mother on speakerphone. She and the doctor agreed I should have an emergency CT-scan that evening. She flew to London the next day and we saw Dr George the day after.
Dr George could not believe that I had been playing football with such a large mass inside my chest. It is hard to imagine walking around and breathing normally with a tumour that size, let alone running the full length of a football pitch. A lung biopsy some days later confirmed Ewing’s sarcoma. Who could ever expect such a diagnosis in a young adult?
The good news was that I was referred immediately to the NHS and its specialist sarcoma team, headed by Prof Jeremy Whelan at University College London Hospital and the UCH Macmillan Cancer Centre. Prof Whelan, a professor of cancer medicine and consultant medical oncologist, was unexpectedly reassuring, calling my case "very treatable" and "straightforward". He even said he had seen bigger tumours. I believed him and I never had any doubts. He calmed my nerves.
“He’s in the right place,” Dr George said. My mother said we were “fortunate in our misfortune”. It was appalling that this had happened, but if it had to happen, we were in a top centre for treatment.
The doctors and our specialist nurse, Alex Donkin, moved like lightning to organise appointments as we raced around London for tests and scans of heart, kidneys and lungs. Elisa's parents are both doctors – her mum is a paediatrician and her dad an anaesthetist – so she was constantly What's Apping them in Brazil with updates on my condition. I remember them saying early on, "Don't be afraid of the word 'tumour'."
There is never a good time to be told you have cancer, but I actually found great relief in being told that the sarcoma was localised and had not metastacised.
Still, with cancer, time is of the essence and there was no let-up in the pace. The tumour was continuing to grow. Within two weeks of seeing Prof Whelan, I started chemo. The Macmillan Centre, where I went for chemo, is a beautiful, inspiring, state-of-the-art building, which opened in 2012. My chemo was long (nine hours a day for three days, every three weeks, over a period of four months) but I always had a private room and superb care.
The NHS owns a boutique hotel around the corner from Macmillan called The Cotton Rooms, where patients who are mobile and can live independently, like myself, can stay for three nights for free with a family member or partner during each cycle of chemo. The Cotton Rooms is a humane arrangement and made life much easier. After a long day of aggressive treatment, I could go straight to bed and come back to the hospital early the next morning after a free breakfast.
President Michael D Higgins told Fintan O'Toole that the NHS is "one of the great achievements of humanity" and my experience bears this out. In Macmillan, we marvel that there are no patients on trolleys and no apparent overcrowding. My care, by a multidisciplinary team, has been outstanding and we are never sorry to enter the building.
There are setbacks. When my fever goes over 38C, I am supposed to go to A&E because chemo destroys my ability to fight infection on my own. Elisa and I have been to A&E numerous times in the early hours of the morning. The first time I went to A&E, they had to keep me in for four days, and when I was transferred to a ward on the 10th floor of UCLH, the man in the next cubicle sadly died.
There has been generosity on both sides of the Irish Sea: the NHS doctors, the specialist nurses in the Ambulatory Care Unit, family friends (especially a surgeon and a priest in Ireland who have been extremely supportive) and good friends and former classmates from NUI Galway, City University London and CNN who spent time with me during treatment, kept in touch and interviewed me for articles. Of course, I couldn’t have done it without my devoted parents, Elisa and her kind parents.
Why did this happen? These things happen because they can, Prof Whelan said.
I’m very tall (6ft 5in) and it may have something to do with rapid bone growth, and the tumour may have been growing for a couple of years. What matters now is getting the rest of it out of there. I will still need three cycles of maintenance chemo after surgery and I will be scanned regularly for several years, but the main thing now is to wake up from surgery and hear Mr Jordan say that I’m cancer-free.
Sidebar: Macmillan Cancer Support
Elisa and I wanted to raise £10,000 for Macmillan Cancer Support, which has given me fantastic help during treatment. I wanted to do a fundraiser online through justgiving.com and Elisa suggested that I should do a weight-gain challenge.
Every cancer patient’s journey is different and the tribulations we face are varied. One of the hardest things I’ve had to deal with, apart from fatigue, is weight loss. I’m 6’ 5” and currently weigh about 75 kgs, which is at the low end of a healthy weight for someone of my height. I’m slim at the best of times, but my weight plummeted during the first two months of chemo when eating enough was a terrible struggle.
We’ll never be able to pay back Macmillan for what they’re doing, which is saving my life, but we want to make this effort to give something back. They are the gold standard in cancer care, offering a range of services to cancer patients and their families, from walk-in counselling and financial advice to alternative therapies.
So far, we've raised more than £5,100, with donations coming from Ireland, the UK, Brazil, the US, China and New Zealand. All funds go directly to Macmillan.