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Charlie Hastings had no symptoms before that fateful day in August 2016 when severe abdominal pain struck as he drove home from an August weekend away with his wife, Ann.
“By the time I got back to the house I had to crawl out of the car,” he says.
His GP was called as the pain continued and he was also now vomiting.
“He thought it was gallstone pain initially but he organised an ultrasound scan for me the next day. He telephoned the following day and asked Ann and I to call in. We suspected it was serious when we got that call.”
Charlie, now 63, was told that a tumour the size of his fist had been found in his pancreas and that the cancer was stage four.
“It was like being hit by a shovel. The diagnosis of pancreatic cancer was frightening. I had heard of that type before and about how, six months down the road, you’re gone,” he says.
The difficult task of telling their children followed.
“Gavin was here and Emma was in Cavan but having to ring Laura in the US was very hard, thinking of her getting that news on her own…”
A referral to a consultant in the Mater Hospital followed and Charlie had five biopsies over the following 12 weeks.
“It was at that point that we were told it was NETS cancer,” he says.
“On the positive side we were told that it was a slow-growing cancer and, if anything, it was the best form of pancreatic cancer to get. Once we realised it was the slow growing one, there wasn’t as much panic but it was still a long road.”
Opinions differed
Opinions differed about whether surgery was the way forward or not, but ultimately he was operated on, a year from the date of diagnosis, in St Vincent’s Hospital, Elm Park, a cancer centre of excellence in Ireland.
“60% of both my pancreas and my large intestine were taken and my spleen was removed altogether,” he says. “While there were 10 tumours on my liver they decided not to touch that.”
Various types of chemotherapy were then tried.
“I was on tablets first, then one injection, which had a lot of side effects and then a different injection, but it stopped working too. It was at that point that a friend wrote to Tommie Gorman who she knew had NETs cancer too, to enquire about treatment abroad.”
Treatment in Sweden
Charlie then linked in with the NETs support group and was inspired to travel to Uppsala under the EU’s Treatment Abroad Scheme for what’s called PRRT.
PRRT (peptide receptor radionuclide therapy) is a specialist form of nuclear medicine that involves radiation-laced injections being administered to kill the tumours.
Charlie’s first trip was for 10 days but subsequent trips for treatment were shorter.
But how did he feel about going to Sweden?
“I hadn’t travelled that much but things weren’t working here and everything’s worth a shot,” he says. “I knew that others were very happy with the treatment and that it had given them a new lease of life so I wasn’t apprehensive. I was in hospital for three days in Uppsala, then in and out for scans on alternate days to make sure the treatment was working.”
Charlie didn’t find the treatment arduous.
“It was intravenous, via a canula and it took 45-50 minutes to get it, then I had to spend 23 hours on my own because of the radioactivity.”
He was in Sweden four times in the year 2018/19 and four times in 2022.
“I was stable for 18 months, then tumours on the liver started to grow again so I had to go back. To be honest, only for Ann and the family, I don’t think I’d have got through it because you need huge support. I can’t imagine anyone going through it on their own. It would be very difficult.”
Charlie also finds the support available from other members of the NETs support group very useful.
“There’s somebody there if you need to talk.”
Minding mental health
Charlie stresses the importance of looking after one’s mental health also.
“I find that if you can keep your head straight, it’s a huge bonus.”
Farming has helped him cope, he believes.
“The fact that you’re out doing things, have a reason to get up in the morning, it stops you thinking about stuff.”
Charlie and son Gavin now have some tillage, along with sheep and cattle and also make hay and haylage for the equestrian market. Charlie also works part-time off-farm. When he became ill initially, he sold all his ewes, however.
“We only had store lambs for a year because Gavin was still in college but we went back into ewes when I started feeling better.”
Currently Charlie is doing well and having scans every three-six months.
Many people comment on how well he looks, but he replies that everyone looks well with NETs.
“99% of patients with it don’t look sick. It’s a peculiar, deceptive cancer, one that not enough people know about,” he says.
He would like to see more money invested in care for NETs patients.
“Funding is a huge issue. More liaison nurses are needed and more awareness of this type of cancer.”
Ann, an AIB staff member, agrees that her husband’s diagnosis came out of the blue.
“That day was the scariest day of my life,” she says. “There’s huge fright when you hear the word ‘cancer’. We were in shock really. I thought I was going to be a widow. There was relief when we found out it was NETs pancreatic cancer a few months later, but the treatment path was a rollercoaster as opinions differed and there was a lot of ‘will we/won’t we (operate).’
“Overall, Charles has a great attitude but we don’t let him lie under it either. We tease him, we slag him. When it’s serious, we get serious, when it’s not, we just get on with it. Our children are great, very supportive. Our daughter Emma came to every appointment with us and we kept a diary all the way through. A cousin of mine who had cancer advised this. She said ‘make notes at every appointment or you’ll forget’. The book was invaluable as you’ll see so many doctors and be asked ‘when did you have this or that done’ so we just used to flick back and be able to tell them. It was our ‘bible’. We logged all the different reactions from family over the years too. Now the book just sits there, but it’s nice to be able to look at it and see how far we’ve come.
“We were lucky in many ways. Charles has so many great friends and relatives who helped him through and so many people sent cards and Mass cards and brought dinners. It meant so much to us. I always send cards now when someone is sick because I know how much it meant to us.
“Going to Sweden felt like our last hope but it worked out great. He was quite sick last year, but he’s doing well now. It’s great that the treatment is available in Sweden but I wish they could do it here. We have been lucky. Very lucky. We are living with cancer, not dying with it, please God. There are so many more people living with it too.”
Neuroendocrine tumours or NETs, is the umbrella term for a group of relatively uncommon cancers, often called the “quiet cancers”.
NETs symptoms often take time to develop. They may be vague, or attributed to more common and less serious problems such as irritable bowel syndrome (IBS), Crohn’s disease, peptic ulcer disease or gastritis. There are a number of different types of NET.
Uppsala University Hospital in Sweden is one of the foremost centres of excellence for treatment of NETS. Access to treatments in Uppsala, or other specialist treatments available in another EU/EEA country that are not available in Ireland, are handled through the E112 Treatment Abroad Scheme with the costs covered by the HSE.
Tommie thanks HSE staff
Charlie and Ann recently joined other NETs patients- led by ex-RTÉ journalist, Tommie Gorman- to unveil a plaque in appreciation of staff at the HSE’s Treatment Abroad Scheme office in Kilkenny.
“I want to say how indebted we are to you,” Tommie told staff. “I know it’s an extremely difficult job, dealing with people who’ve got fears and needs and sometimes patience may not be there because they are worrying about hanging on and getting the best treatment that’s available.
“For you every day that’s what you’re having to confront and it involves great patience and sensitivity. We are so conscious of how well you serve the public and how decent you are to us. Even though we now have a centre of excellence in Ireland and things have improved we still need to go abroad for some procedures and if it wasn’t for your kindness and professionalism and empathy, we wouldn’t be here to celebrate with you like this. We thank you for the bottom of our hearts for the work you do, day in, day out. I hope you’ll see this plaque as you go about your work and remember that you’re appreciated.”
He pointed out that the idea for the event came from retired Wexford auctioneer, Adrian Haythornthwaite, a NETS patient, who passed away, sadly, in March 2023.
Tommie’s words were reiterated by Mark McDonnell, who is a founding member and chairperson of the NETs Patient Network and also President of the International Neuroendocrine Cancer Alliance.
“The staff have been wonderful at smoothing the way for use. It’s not an easy journey for us but you make it easier,” he said. “Many of us are alive because of the treatment we got in Uppsala.”
For more information, see the NET Patient network website neuroendocrinecancer.ie/ and the Treatment Abroad Scheme HSE webpage
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