‘We can beat this cancer through knowledge, action and care'
She might be the head of Ireland’s leading charity for the illness but Carmel Doyle has first-hand experience of oesophageal cancer
CARMEL Doyle is a charity CEO with a difference. As the head of the Oesophageal Cancer Fund she is currently organising the annual Lollipop Days for February 23 and 24 this month which raise funds to support those with the cancer and for research into an illness where Ireland has one of the highest rates in Europe.
But the Dubliner has also experienced oesophageal cancer in her own family when her husband Gerry was diagnosed with the illness in 2011, something she describes as akin to a bus running over her body.
Fit and healthy, Taekwando instructor Gerry didn’t drink or smoke and he wasn’t overweight.
‘Gerry was suffering from heartburn and he was guzzling Gaviscon by the bottle. I insisted he go to the doctor and while it took a bit of persuading he did,’ says Carmel
‘A few weeks and tests later, he was diagnosed with Barrett’s Oesophagus and that meant regular endoscopes and monitoring, as the doctor said this was something we’d keep an eye on. No biggie we thought.’
Gerry got used to getting his regular scope.
‘When I was diagnosed with Barrett’s Oesophagus I knew nothing
‘It was a big shock, I had no symptoms at all’
about it,’ he says. ‘When the doctor told me about it, he said there was a small percentage of people who went on to develop cancer from it and we would just keep monitoring it. Every year I would go for a scope and things were coming back clear so I suppose I got a bit complacent and thought it was grand.’
In 2009 Gerry had some cells lasered off but when he went back for the scope in 2011 the doctors had bad news.
‘Something came up and it was a bolt out of the blue,’ he says. ‘It was a big shock as I had no symptoms at all.’
Gerry’s cancer was picked up quickly due to the fact that he was being scoped because of his Barrett’s oesophagus diagnosis.
‘It meant he was in the system getting tested,’ Carmel says. ‘They picked it up so quickly.’
‘There was a little growth which they lasered away but three months later they scoped and there was another one that was when they made the decision to remove my oesophagus,’ Gerry says.
The doctor told them that it was a sledgehammer approach but one that would give Gerry the best chance of survival.
‘It’s hard to go back to the time because it was a real shock,’ says Carmel whose youngest was only four and was with them when they were told Gerry had cancer.
‘When you hear those words everything goes into slow motion.’
Ireland has one of the highest rates of oesophageal cancer in Europe with over 500 people diagnosed each year. Oesophageal cancer is the sixth leading cause of cancer mortality worldwide and is more common among men than among women by a ratio of three to one. In Ireland the progress of 9,000 at risk patients with Barrett’s Oesophagus, a pre-indicator of potential oesophageal cancer, is being tracked across six hospitals and OCF has been a pioneer funder of this research.
More than with many other cancers, the early signs of oesophageal cancer are easy to overlook. Many people could be tempted to dismiss what can seem to be digestive complaints. Early detection is vital, and OCF works to promote awareness of the signs and symptoms of the cancer.
Gerry faced a big operation and Carmel had to prepare her children for the fact that their dad would be in hospital. It was a scary time, she admits.
‘Rose was only four and in preschool, Tony was six and Jack was eight about to make his First Communion that May. So you have to be very careful what you say — you don’t want to scare them too much and you have to use language that is appropriate for them.
‘It was a very scary time with three young kids and Gerry having this cancer that people couldn’t even spell never mind say.’
Meanwhile, Gerry did his best to remain positive and maintain his fitness so that when the operation came round he would be fit for it.
‘I built myself up and did cardio training and strength training and tried to stay positive that way,’ he says. ‘I knew I couldn’t control anything the doctors were doing but I could do things that would help to give myself the best chance.’
Carmel was anxious — more than Gerry — but it was a phonecall from Noel Walsh from the Oesophageal Cancer Fund that helped most.
Carmel says: ‘I got on with the day things, keeping things normal for the kids and working away. I was working for myself at the time and life has to go on. I was very busy, I had great support for my family but there were very few people I told — I just didn’t want to use the word cancer. I didn’t want to talk about it really.
‘Thankfully, that’s when we were introduced to Noel Walsh and the Oesophageal Cancer Fund. Noel, who was seven years down the track after his surgery, called Gerry
‘I just didn’t want to use the word cancer’
to chat through things and to share his experience. That was the most calming phone call ever and I know that Noel made many of those calls. I never stopped thanking him when we met at patient meetings years after. The power of that one phone call I’ll never forget.’
Gerry was operated on and his oesophagus, nearly the size of a 12 inch ruler, was removed, while his stomach is pulled up to attach to the throat, leaving a much smaller space for food.
In the first five days post-surgery — and in Gerry’s case six — you can’t eat at all and Carmel says Gerry did lose weight in the beginning.
‘Directly after the operation there were a lot of issues I had to work through for a while,’ he says. ‘I was absolutely exhausted because the way you have to eat is very different so you aren’t getting the same amount of nutrition.’
But slowly and surely Gerry got back to health and 13 years later he is teaching Taekwondo and living life to the full.
‘I was lucky in that I have a good appetite but if you eat too much normally, you feel uncomfortable. Because the size of my stomach was reduced if I ate too much, then magnify that feeling by ten. But after an hour or two that would be gone and I would want to eat again and that helped because quite a few people who go through the operation and experience that uncomfortable feeling after food tend to steer away from eating and then start to lose too much weight. I was lucky in that I persevered — I just liked food too much,’ he says, laughing.
‘It’s a very big operation and the two biggest lasting effects is because of the way they reconstruct your stomach to make a new oesophagus. That non-return valve that people have to stop food coming back up isn’t there. So if I am lying down having eaten, the food basically just comes back up out of my stomach. That means I have to sleep sitting up and obviously you don’t eat late at night because the food will come straight back up.
‘The other big one is eating smaller portions as because of the reconstruction your stomach is much smaller so the portions you can eat are a lot smaller. I wouldn’t be back to what I was eating beforehand but certainly I would be about 60 to 70 per cent.’
Gerry made it to Jack’s First Communion two weeks after the operation in May and by September he had opened two more taekwondo classes which he was teaching.
It was a relief when two weeks after the operation they got the call to say there was no need for chemotherapy or radiotherapy and Carmel and Gerry both found support in the aftermath from the OCF patient support meetings.
‘We got lots of tips, not only about food, but also about the best sleep positions and how to prop up in bed, with about six pillows, to ensure that food doesn’t travel back up while sleeping. Sometimes, getting into the subject of caring for the carer, and the post traumatic stress that many of us experience but don’t tend to talk about.
‘Over the years we’ve made simple adjustments post Gerry’s oesophagectomy (now there’s a mouthful) like asking for our dessert to go when eating out or asking for a half portion. In the early days, I had to order food for Gerry who was still inclined to order with his eyes and they were bigger than his belly, so the double cheeseburger was definitely out. Gerry always loved cake, but his stomach can’t tolerate high sugar food, so we found a recipe for tea brack with no butter no sugar which works a treat, and often bring that along to the OCF meetings.’
Carmel previously worked for herself before moving to the Jack and Jill Foundation so when the opportunity arose to become CEO of the charity which had helped her family so much and of which she was fully versed, she took the challenge.
Charity patron and golf legend Padraig Harrington helped Carmel launch Lollipop Day which takes place on February 23 and 24 this year. OCF volunteers will be at 80 locations nationwide to sell lollipops on those days. The charity is urging people, who can’t donate cash for the lollipops, to donate online at ocf.ie or to organise their own school, club or company fundraiser this year.
Padraig is patron of the charity for a very personal reason.
‘I’m delighted to support the work of the OCF and to help spread awareness through Lollipop Day about the symptoms of this terrible cancer and to encourage people to book an early GP appointment,’ he says.
‘Unfortunately, my family has experienced the devastation of this cancer, having lost my dad to it in 2005. He had been experiencing symptoms for quite some time and an earlier diagnosis could have made a big difference. What we do know for sure is that early detection saves lives and that’s why awareness building is so important.’
The charity is using Lollipop Day to also urge the Irish pharmaceutical sector to promote early detection by carrying bigger and better warnings on their antacid packaging and through their advertising, as they do in the US market for example.
OCF says that it is more important than ever to raise vital funds to spread awareness about oesophageal cancer.
‘The good news is that survival rates show a 50% improvement in Ireland,’ Carmel says. ‘We need to work to improve that figure by encouraging early detection and improving the knowledge around the symptoms of oesophageal cancer. For that we need donations from the public.
“Primarily, these symptoms include difficulty swallowing, persistent acid indigestion, heartburn and reflux and unexplained weight loss. Unfortunately, approximately 70% of patients experience these
‘Survival rates show a 50% improval here’ ‘We urge people to go to their GP early’
symptoms for three months before contacting their GP and we urge people to go to their GP early. “
‘Early detection not only saves lives but it also saves money in the Irish healthcare system. That’s why knowing the symptoms really matters and we want people to act fast. We are very proud at OCF of the work we do in patient support, early detection and research, and the funds raised through Lollipop Day are vital in keeping all of that going.’
Research is allowing treatment to improve all the time too — back in 2011 when Gerry had his operation, there was no keyhole surgery but technology means that there is now.
‘It is a very scary cancer but with more patients, like my husband Gerry, sharing their stories and driving this awareness campaign, along with our patron Padraig Harrington, we can beat this cancer through knowledge, action and care,’ says Carmel. ‘And, for those who are diagnosed with this cancer, they should know that they don’t walk this difficult pathway alone, and we will be there by their side, through our patient support programme.’
Patient support and networking is hugely important for those affected and OCF is funding five local patient support meetings around the country this year, in addition to educational workshops and literature on diet, exercise, sleep patterns and wellbeing for those affected.
For more information on Lollipop Day, to volunteer, or to make a donation, please go to