Peter McCleave used to take part in gruelling marathons, now he's in a race against time to extend his own life... but the Englishman says his NI ancestry means someone here could help provide vital breakthrough
The 41-year-old dad, from Cheshire, was devastated when doctors told him he had myeloma, but the fact his grandfather hailed from Belfast increases the chances of finding a stem cell donor here in Northern Ireland. He talks to Leona O'Neill
An Ironman champion is looking to his Northern Irish roots to find a stem cell donor to help him stay alive in a battle with blood cancer. Two years ago Peter McCleave (41), who lives in Cheshire and is married to Jenny with two boys, Max (8) and Seb (6), was diagnosed with myeloma, a cancer that develops from cells in the bone marrow and attacks the bones.
The keen competitive sportsman was diagnosed after suffering from pains in his back following a gruelling Ironman Wales Triathlon challenge in 2016, which consisted of a 2.4-mile swim, a 112-mile bicycle ride and a marathon. Initially, he put the discomfort down to his busy training schedule for the mammoth challenge.
However, the cause turned out to be much more serious and the banker was given just seven years to live unless he finds a stem cell donor that perfectly matches his, based on his heritage.
With his grandfather hailing from Belfast, now he is looking to the Northern Irish public for help.
"I was diagnosed with cancer in March, 2017," Peter says. "But it all kicked off after I did a triathlon in 2016. A few days after I finished that I ended up in hospital with pneumonia, Legionnaire's Disease and sepsis.
"It was unexpected. I had spent the previous nine months training for the Ironman race in Wales. I was as fit as I had ever been in my life. I had never felt so good. There were little aches and pains and things, but nothing you wouldn't put down to training.
"I finished the race and two days later I felt a little ropey and I thought I was just a little tired. My wife Jenny persuaded me to go to see the doctor and that's when I was hospitalised.
"I got clear of those things, but in the subsequent months my health didn't really pick up the way it should have done. So I had a number of tests done to see what the problem was. It was actually by pure fluke that they found it. I was very lucky in the sense that it was diagnosed when it was.
"During other tests they found a shadow on my lung and sent me for a CT scan of my chest area. The radiographer spotted some lesions on my skeleton when looking for something else. And when they did a full body CT scan these lesions were everywhere. Apparently the myeloma had been building up over time, but I had blamed the symptoms on training and ignored them."
Peter says the day he was told, aged 39 that he had incurable cancer, knocked him for six. Reflecting now on the past two years, he admits: "Being told I had cancer was strange. When the consultant told me I had myeloma, I asked him whether I could take antibiotics for that. I had never heard of it before that moment. It was when he said it was a blood cancer that I laughed. I started talking nonsense.
"I said that it couldn't be right as I had just done an Ironman competition. I told him I was so fit, that I was only 39 years old... when what he had actually said really started to hit me I can only describe it as like the sensation you feel when you put your head under the water at the swimming pool and all the noise around you is muffled.
"The consultant was talking to me, but I was completely dazed by the whole thing. I couldn't take anything in and I just couldn't wait to get out of the room. The next 48 hours were brutal. I had to tell my wife and get used to the fact that what was happening to me was actually life-threatening.
"I didn't see any of this coming. As far as I was concerned I was lining up another race in four months time."
Evidently, too, while the physical symptoms were what had first alerted medical experts to his illness, Peter also was going to have to come to terms with the emotional fall-out.
Talking frankly about his lowest moments, he continues: "Night-time was the worst. You're lying there with your own thoughts and you are chewing everything over in your head. I can totally see how people could descend into a depression.
"A few months later I was given the prognosis of seven years and that was just ridiculous. I had two kids and all the assumptions you make about life are just thrown down the toilet. From my perspective I thought that if I was going to have a limited number of years left with my family I wasn't going to waste it moping about it. So I've tried to be as positive and proactive as I can."
And from that determination to make the best of life, Peter also resolved to do everything possible to extend the years he has been given by doing everything possible to find a stem cell donor who would prolong his life.
"'The myeloma has left my immune system compromised so I now need someone who is a genetic match to donate some of their stem cells, which can be transplanted into my blood," he says.
"I was told that there is stem cell technology that could extend the seven years, or the five years I have left, even further. If I can find myself a stem cell donor then I can feasibly extend beyond my five-year prognosis. So that is what kicked off the campaign.
"Since then it has become much bigger than me. There are so many people who are struggling to find a stem cell donor. Not just blood cancer patients, but other patients. "Finding those people a match and giving those people a hope that there is something beyond the prognosis that they have been given has been the motivating factor in my campaign. We have thousands of people signed up in the last number of months. We need to just keep growing it now.
"Only 2% of the UK population is on the register at the moment. All I need to do is up that. It gives us a brilliant opportunity to get people matches, including myself. It is a numbers game. We need to up the numbers and hope that someone comes through.
'While my myeloma is incurable, the revolutionary treatment will give me a new immune system, which would be completely life-changing. My hope is that this will prolong my life enough that a cure can be found."
There are two possible ways of donating stem cells. The first, and most frequently used, is to donate stem cells from circulating blood extracted by a needle in the arm. The second method is donation of bone marrow itself, which involves the removal of stem cells from the hip bones. It is not a painful process and Peter is now looking to the Northern Irish public for help.
"My grandfather was from Belfast," he says. "His name was James McCleave. He was in the Armed Forces. He left Belfast and travelled the world and met my grandma in Macau. So I have a bit of a mixed heritage. But I have a greater chance of getting my stem cell match - because I have the Asian mix and the Irish mix, there is a greater chance of me finding my match in either Macau or Ireland.
"Tapping into those communities will improve my chances of getting a match. I am holding my best hope in Northern Ireland.
"It is very easy to sign up. You log on and fill in your details. They send you out a pre-paid envelope with three cotton buds in it. You swab the inside of your cheek and send it away. "It is that simple. And it could save some one's life... such as mine."
Peter is urging people from Northern Ireland to sign up to the stem cell register at www.dkms.org.uk/en/register-now