April 2020. As the first Covid 19 lockdown brings life in Ireland to a shuddering halt, Eddie McGuinness, the founder of the world’s first LGBTQ+ matchmaking festival, The Outing, is busy doing exactly what you’d expect him to be doing, calling balcony bingo for his neighbours from his second floor apartment.
But after weeks of calling numbers and rallying local spirits, Eddie began to realise that something wasn’t quite right. His throat was increasingly sore at the end of each session, he was losing weight and low on energy.
His first thought, naturally, was Covid 19. But when his symptoms worsened week after week, he began to fear that his health was facing something altogether more serious.
Unbeknownst to Eddie, he was suffering from stage four throat cancer and he was about to face the fight of his life.
“I was being extra careful at that time, we all were, every time you felt unwell you thought it might have been Covid. But it wasn’t Covid. I thought it might have been tonsilitis. I got one course of antibiotics after another and nothing seemed to help,” he told The Clare Champion.
“My voice became very hoarse and it became difficult for me to even breathe at times, but most importantly it became hard to swallow. My husband John started to notice that I was losing weight and every so often I would have a nosebleed. At that time I couldn’t see a doctor, nobody could see anyone, we were all in our bubbles.
“I got a boil on my neck in October that wouldn’t go away. So then I reached out to my doctor again and he agreed to see me. He asked me to see a specialist in James’ Hospital.
“It’s hard to remember what it was like back then but it was very difficult to get out to see anyone, especially a doctor. But I was getting worse very quickly, at that stage I was having difficulty even swallowing food. That was quite scary.
“The worse thing was, I had to do all of this on my own. My husband John was not allowed to come with me, there could be no one with you to hold your hand in the hospital.”
Within minutes of seeing a specialist, Eddie was informed that he had throat cancer. Further tests would reveal that it was stage four cancer and had spread from his throat to his tongue, tonsils and his lymph nodes.
The first step was surgery to remove part of his tongue, his tonsils and lymph nodes followed by a heavy bout of radiation and chemotherapy.
“It was fairly far gone. I tried to keep myself focussed on what was in front of me but I was terrified inside, absolutely terrified. It was lonely, it was very, very lonely,” said Eddie.
“In January of 2021, I started my radiation and chemo. I was gung-ho about it at the start, I even signed up for a Masters in college. I thought the college would keep me distracted while I was getting all of this poison pumped into my body.
“It was far from that. After a few more weeks my body was just breaking down. I remember when I started my sixth week of chemo, at that stage I hadn’t eaten for the previous three weeks. I was taking glucose each day and eventually they put in an NG [nasogastric tube], so I was walking around with my food in a back pack.
“There was hair loss, weight loss, muscles degrading, no energy. I was just going to the hospital and then coming home to sleep. That was my life. It was so lonely, nobody could come near me. At that stage Covid was at its very highest and I was completely isolated. My immune system was so low.
“No matter how positive a person you are, this catches up with you. I was very low on myself. I’m a people person, I love talking, but at this point I had lost my voice. I couldn’t talk, I could only just about whisper.
“I remember one Tuesday morning, myself and my husband chanced a cuddle for 20 minutes before I went for treatment. It’s like we somehow knew what was going to happen, after I went to hospital that day I didn’t come home for six weeks, I was so weak.”
As Eddie continued to grow weaker and weaker, he reached a point where he felt that he wasn’t going to make it.
“There were times when I didn’t have the strength, mentally or physically, to keep going. I gave up on two occasions. It was the lowest point of my life,” said Eddie.
“I remember the day of my last round of chemo, they weren’t going to give it to me, I was that weak. I told them that I’d prefer for the chemo to kill me rather than for me to give up. That’s where I was.
“That day the nurses gave me a bed with a window. They must have known, but my friend Thomas did up a holly tree outside with fairy lights, so that at night I had a few twinkles outside my window. During those days, my husband John and a few friends would come and just sit on the wall outside where I could see them.
“At this point I had been in bed for three straight weeks. I couldn’t walk. I remember my first time walking around the garden in St Lukes Hospital after the treatment finished. It was one of those moments.
“I needed something like that, I think I had mentally given up. That gave me a push to keep going and it was a slow progress from that for the next few months.”
Eddie is currently in remission from his cancers but he still faces years of tests to make sure it doesn’t come back. The treatment he received also damaged his spine, which is now a source of shooting pains, while he is also slowly losing power in parts of his body.
Eddie’s cancer was caused by the human papillomavirus or HPV, a common group of viruses which can cause cancer in some people. As there is an effective vaccine for HPV, Eddie’s cancer could have been completely avoided.
Eddie is following in the footsteps of the late Ennis woman, Laura Brennan, in campaigning for an increased uptake in HPV vaccine in both women and men.
“Most men of my age, I’m 55 years old now, haven’t been vaccinated with the HPV vaccine. The vaccine can help fight it [the development of cancer], it can help prevent it, especially when caught early,” he said.
“Men need to be aware of this. This isn’t about gender, this isn’t about sexuality, men and women need to get checked. The vaccine has been available for both boys and girls for a number of years now and I would urge parents to let their sons, as well as their daughters, get vaccinated.
“There are no side effects, there is nothing like that at all. It’s just there to protect you.”
Eddie hopes that by sharing his story he can help increase the uptake of HPV vaccines, in a similar way to Laura Brennan.
“Laura Brennan was an amazing individual. I watched her story as I was going through my journey. I’d love to help continue her work to get the message out there if I can,” said Eddie.
“I want to help get the message out there, people can prevent this [cancer] by getting the vaccine. More young men should be getting it and the HSE should also be giving it to more older men, over the age of 26. It could be the difference between life and death.”
Andrew Hamilton is a journalist, investigative reporter and blogger who has been working in the media in Ireland for the past 20 years. His areas of special interest include the environment, mental health and politics.