I was diagnosed with leukaemia five years ago last June. Blood cancer is one of the invisible cancers. The symptoms are the very same symptoms you’d have with a bad flu. I was very weak with a total lack of energy. You’re always saying to yourself “Listen, it’ll go on a week”, but it goes on for months, and then it becomes a flu you can’t shake off. That’s a common feeling.
I was putting it down to the flu, to weakness. I went to a doctor and he said there were no problems with me. He wrote me off with sinus [issues], and said maybe I had blood pressure problems. It never even dawned on him that it would be something like this, so he didn’t do a blood test.
I was getting weaker and weaker until one day I was coming home from school [where I am principal] and I went to untie my laces and I woke up three hours later.
I rang the doctor with the Galway team, Michael Corcoran, and he sent me to a doctor in Galway. He insisted I go for a blood test, and once I had the blood test back from Limerick, they said: "This man should not be walking around" and brought me in, and really the treatment started from there.
I’ll tell you the speed with which it was dealt with. I went in, I had a bone marrow test and of course they knew what it was. That day he told me I had leukaemia, he said “you’ve to be in James’s this evening at seven o’clock”. It was that fast: I was down in Limerick, I went in to see Dr O’Keeffe that morning, he told me I had acute myeloid leukaemia and I was to be in James’s that evening.
My case had gone very far so it had to be stopped, they had to start the treatment as quickly as possible. That would all have happened three or four months earlier if I’d got a blood test. My system wouldn’t have been as low.
The treatment is very severe, there’s no getting away from that. The amount of chemo you get is absolutely monstrous but at the end of the day, I’ve lived to tell the tale and that’s the main thing. The treatment and the care you get, you just could have nothing but praise for the people from the very top, the consultants, to the people who clean the room.
With leukaemia, there are rogue cells in your blood, taking over your system completely. If unchecked, they will just close down your system. By the time I was diagnosed, they had a very firm grip on my system. I was very weak and the danger then is that you’ll get an infection, even through a cut. You’ll be in serious trouble then because you won’t be able to survive the infection.
That’s why it’s so important for people who have these symptoms to get a blood test, because the weaker your system becomes, the more vulnerable you become, and infection is really the thing that kills you. I was lucky to get in when I did, and I was lucky I hadn’t gotten an infection.
The treatment was in four phases. The first two phases were to kill the leukaemia. Each phase involved about 10 days of chemo, various types of chemo three times a day, then your system would crash down to nothing. I was totally vulnerable to the slightest infection. After about 22-23 days, you’re hoping your system restarts itself again. When it’s back to a certain level, you come home for a week to build yourself up again, but then you’re back in again for more of the same.
When I had those two phases over, I had to go back in again for another two phases to prevent it from coming back. One of those was very severe. They load the chemo up to the very last – I was on chemo 24 hours a day for three days and then 10 days of other chemos at the same time. Really, it was a six-month treatment period.
The very first treatment I had, I went in at the end of June, then I was coming out at the end of July, and the day I came out from the hospital, this bizarre story went around that I had died. The rumours were that I was very, very bad, when actually I was improving. Someone rang the hospital to talk to me and the hospital said “I’m sorry, I’m afraid he’s gone”. “Gone” meant I’d gone out of the hospital, but to the person ringing, “gone” meant I was dead.
We’ve a son in Australia, Conor, and he heard the rumour before we had. He rang home and I actually had to go on the phone to convince him I was still alive. He thought we were just hiding it from him. That’s the story of how I died and came back to life again.
In the hospital, I was in isolation; I was in the room on my own all the time, because the main thing is avoiding infection when your system is so low. Really, you’re incarcerated there for maybe four weeks at a time before you can get back out into the air for seven days, and then back in again. It is difficult, there’s no doubt about that, but the recovery rate from it is very high.
I came home and gradually my strength started to come back. I was very lucky my system did reboot itself after each one of the phases. It is something that is treatable but the stronger your system is at the start, the better it is for you.
When I came home, I went back every month for a blood test, then that goes out to two months, three months. Five years on, it’s down to six months; I go in twice a year to get my bloods checked, which is good anyway.
The strange thing about leukaemia is that it happens to every age group, from infants to elderly people, to the most able-bodied people. No one knows where it comes from. So many people when they’re diagnosed get onto me; you’d be amazed, in every age group people get it.
I’m clear now. Definitely I’m better now than I was for the year before I was diagnosed. I’ve greater energy levels now than I had then.
I'm retired from school now. I do TV work and I write a thing for the Star on the hurling but my biggest interest of all is hunting. I have a lot of hunting hounds and we hunt hares over the winter months, and I mind them and walk them over the summer months. That keeps me very busy.
The thing I like best is hunting, and I love hurling as well, having given a lot of time as a player and manager and commentator on it, but hunting is the thing that takes up most of my time now. I love being out in the fields in the countryside with the dogs. And sure, isn’t it great that I’m able to do it.
In conversation with Aoife Valentine
September is Blood Cancer Awareness Month. The Make Blood Cancer Visible storybook is available from the Irish Cancer Society, Multiple Myeloma Ireland and Janssen Ireland.
