Memories of my time as a cancer patient are increasingly difficult to gauge as I move further away from my surgery on March 1st last, after 10 months of treatment for Ewing’s sarcoma, a rare bone cancer. But June 23rd, 2016, is a day I will never forget, the day of Brexit.
It was 7pm and I had just finished my second cycle of VIDE, an aggressive chemotherapy that lasted for nine hours a day, three days in a row, in the Macmillan Cancer Centre, a state-of-the-art building located near University College London Hospital. When the treatment was completed, I said goodbye to my mother, who had flown over from Ireland, and headed home to my flat in Soho, about a 20-minute walk away.
I’d been living in central London because I wanted to be close to CNN International, near Oxford Circus, where I’d been hired as a paid intern for the World Sport programme.
But within days of completing the internship, I received a shocking diagnosis: a 15cm (6in) tumour had been discovered in my chest. “The size of a melon,” one consultant said. Despite the traumatic circumstances, it turned out that one of the top sarcoma specialist teams in the world was only two Tube stops away from my flat. Help was at hand.
The plan after chemo that day was to meet my former girlfriend Elisa, from Brazil, who was finishing work. I picked up a couple of burritos for us and met her at my flat. We chatted about our day while eating the food and joked about my newly bald look. Though my hair has grown back now, to this day she maintains that I looked better bald.
Except for my first chemo session, I generally felt fine while receiving even the aggressive chemotherapy. But this time, within an hour of being home, I felt my stomach grumble, and Elisa mentioned that she had a pain in her stomach. Food poisoning struck quickly. She became a little nauseous and I keeled over in a lump. My reduced defences from chemo meant that I was more susceptible to sudden sickness from bad food. Hours of trips to and from the bathroom ensued and continued long into the night.
Before I fell asleep, I looked at a notification on my phone predicting that the Remain vote would win in the EU referendum and another saying that former UKIP leader Nigel Farage had appeared to concede. Farage had said "it looks like Remain will edge it" as polling stations closed. It had been the only soothing experience of my day. I woke up often during the night and finally got to bed properly around 5am, not even checking my phone, feeling assured that Remain had won.
Loud banging
I woke up to the sound of loud banging on my door. My eyes opened groggily to Elisa, standing in front of me, out of breath, asking me what the hell was going on. I looked at my phone. It was 5pm and the notifications flooded in.
“Britain has voted to leave the EU,” I said to her.
“No! Why weren’t you answering your phone?” she asked, worriedly.
Between the food poisoning and the chemo fatigue, I had slept for 12 hours. Not good, under the circumstances. I immediately checked my temperature: It was 39.4 degrees and I groaned theatrically because I knew what it meant. Elisa started packing my bag for the hospital. While undergoing chemo, I had been told that if my temperature went above 38 degrees, I had to go to the emergency room as soon as possible because I could be neutropenic, meaning that if I had an infection while my white blood cell count was low, I could get pneumonia, or worse.
My initial feeling after the Brexit vote, which will stay with me always, was as if I had woken up on another planet. I had to return to hospital during what was supposed to be my first day of freedom, and somehow, the Leave vote had won narrowly. I was shivering in my bed in A&E, a sign that my body was trying to cool down, while receiving antibiotics intravenously to ward off any potential infection.
I spoke about the vote with two young male nurses who were looking after me. They were as shocked as I was. One of them told me he had spent 36 continuous weeks in an incubator after becoming ill. The NHS had saved his life. At that moment, his gratitude to the health service, whose staff comes from all over Europe and the rest of the world, was how I imagine I sound when I tell people about my experience now.
The day after the vote, David Cameron resigned as British prime minister. A few weeks later, his successor, Theresa May, said, "Brexit means Brexit". It eventually became apparent that leaving the European Union would take a couple of years. I had a lingering sympathy for future young men and women, like myself, who would want to come to the UK to work or study and might be denied the opportunity. More importantly, they might not have access to the incredible healthcare I have received.
My diagnosis had come out of the blue and my treatment had been gruelling, consisting of chemotherapy, radiotherapy and finally, major surgery. The Ewing’s tumour had responded well to chemo, which means it shrank, and over the course of a five-hour operation, surgeons at the Royal Brompton successfully removed the rest of it from the right side of my chest.
Mesh prosthesis
They also took out a small wedge of my right lung and parts of four ribs and replaced them with mesh, layered in cement. A plastic surgeon from the Royal Marsden moved a muscle, known as the LD flap, from my lower back to my chest to cover the mesh prosthesis.
My original surgery had been cancelled a month earlier due to pneumonitis (inflammation) around my lung. I wouldn’t find out until months later that I was also likely suffering from a low dose of pneumonia before and during my surgery.
On March 10th last, I was discharged from the Brompton and was looking forward to going back to my flat near Leicester Square. Upon leaving, a nurse handed me a large bag filled with prescription drugs for the pain and a corresponding timetable for when I should take the medication, which included morphine, a nerve agent and codeine.
My mother carried my laptop and rolled my suitcase out of the hospital. I wasn’t allowed to lift anything over 4.5kg (about 10 pounds) and I had difficulty walking. I had trouble taking deep breaths because the pain was severe when my chest expanded.
I have always been a good sleeper but the severe discomfort and intense pain I was in disrupted my sleeping patterns. I could only rest in one position, flat on my back, and it would remain that way for the next six to eight weeks. Any other position was simply too painful. I had been told not to raise my right arm above 90 degrees.
In April, I had my first follow-up appointment with a member of the Brompton surgical team. Before my operation, I’d rather optimistically presumed that, at this point, I’d be feeling great and looking forward to getting back to the gym.
Barely moved
But it was premature. The doctor on duty told me that my scar looked great, but the whole right side of my chest barely moved when I inhaled and that was worrying for me. When I asked her if I’d ever be able to run a marathon after this, she looked at me and said: “Right now, your right lung is not expanding very much. I’d expect this to improve a little, but you’re going to have to work a lot harder than other people.”
The prosthesis in my chest prevented my diaphragm and lung from functioning as normal. Only time would tell how I’d be.
The weeks passed and I improved slowly but steadily. In May, two months on from my operation, I was back in the Brompton for my final follow-up. Fortunately, on that day I met the men who had operated on me. Mr Simon Jordan, consultant cardiothoracic surgeon and chair of the cancer team, said radiotherapy had really traumatised my right lung.
“The lung to me is still a little bit hazy, compared to the other, but I think it’s getting better. I suspect you’ll always be left with a slightly limited movement in the lower and middle lobes. Exercising, pushing yourself, these things will help.”
Lung leak
He confirmed that I had a combination of radiation pneumonitis and pneumonia during my surgery. “There’s always a small chance your lung can spring an air leak from the lung into the area of the prosthesis, which makes it easier for germs to get in and it all becomes infected. You’ve had a triple whammy, chemo, radio and surgery, in quick succession and it really takes it out of you. It’s been an ordeal, but you’ve done well.”
The Brexit crisis rumbles on. I recalled that fateful night in A&E when the outcome of the referendum was still barely sinking in. I thought of all the doctors and nurses involved in my care who were foreign-born.
My radiologist was South African. The sarcoma team included oncologists from Greece and Italy. A key member of my surgical team was Romanian. The chemo nurses came from the Philippines, Albania, Ghana, Spain and Portugal. Surely, if fewer people like the ones who treated me came to the UK, it would be a great loss to the NHS.
PANEL: Setting a financial goal
In October 2016, Elisa and I began a fundraiser for Macmillan Cancer Support and set a goal of £10,000 (about €11,330). The support we received and the feel-good factor it gave us is something I will always cherish. But several months passed and we were stuck on £5,000; our target seemed unreachable.
Then, on January 16th, with the publication of my first Irish Times article, the fund jumped to more than £7,000. Suddenly we were optimistic. Raising money for charity was new for both of us and we learned to be more patient.
On June 28th, one day after my second article appeared, we reached £10,489.51. Special thanks to the anonymous Irish Times reader who donated £1,000 with the intention of getting us over the line. We don't know who you are, but we appreciate your generosity. And thanks to everyone who gave along the way.
