‘We are living with cancer, not dying with it. I hope we continue to be lucky’

A RATHMOLYON farmer recently said a formal ‘thank you’ to HSE staff members for helping him access life-saving treatment abroad.

Charlie Hastings (63) is alive to day thanks to pioneering treatment he received in Uppsala in Sweden for his rare form of cancer.

Charlie says that the wonderful support of the HSE’s Treatment Abroad staff, who are based in Kilkenny, has helped him in his battle with the disease and many others like him who need to travel abroad for treatment.

"After surgery in Dublin, I needed to go to Sweden for more treatment. The idea of travelling abroad was daunting but the attitude of the Kilkenny staff was to help me in every possible way. Thankfully, the team at St Vincent’s in Dublin are now able to provide the care and monitoring that I need, but it is comforting to know that if I again need treatment abroad in the future, I will be helped to access it.”

Charlie and his wife, Ann were returning home from a bank holiday weekend away in 2016 when he experienced a severe pain in his side.

"By the time I got home, I couldn't get out of the car. I had to crawl out. I rang our local GP, Dr Joe Clarke, who suspected gallstones and organised an ultrasound for me in Clane. "The day after the scan, he asked for Ann and I to call in.

"He brought me into his office and then went out and brought Ann in, so I knew it wasn't going to be good.

"He told me there was a large mass in my pancreas. It was very frightening. I immediately thought of people who've had it and six months down the road they were gone.

"When we got home from Dr Clarke's we didn't speak for ages. We knew we had to tell the children. Gavin was at home, Emma in Cavan and Laura in America. Having to tell Laura over the phone was very, very hard."

The next month or so was very scary.

"I had five biopsies over twelve weeks. The upshot was I had a rare form of cancer – neuroendocrine tumours (NETs) and it was stage four. They are slow growing tumours and they told me it was the best form of pancreatic cancer to get.

"I went to see a surgeon in the Mater who was going to operate on my pancreas and liver, but after further tests he didn't seem as confident and we looked for a second opinion."

After a visit to Dr Derek Power an oncologist in Cork, Charlie was put in touch with Professors Dermot O'Toole, Donal O'Shea and Emir Hoti at St Vincent's Centre of Excellence for NETs.

"In July 2017, Prof Hoti removed my spleen, 60 per cent of my pancreas and 60 per cent of my large intestine. I had ten tumours in my liver but he said I wouldn't be able for surgery on my liver."

The surgery was successful and Charlie underwent a number of different treatments.

"I was on a chemotherapy tablet that worked for five or six months, but then the tumours started growing again. Then I had chemotherapy injections. I was being scanned every three months and the tumours started to grow again."

"A good friend of ours in Summerhill sent an email to former RTE correspondent, Tommie Gorman, who she knew had NETs, to ask him about treatment abroad. He got in contact and was instrumental in my travelling to Sweden.

Charlie learned he could have PRRT procedure, involving infusions of a radioactive isotope, if he travelled to Uppsala in Sweden for the treatment.

He linked in with the NETs Support Group and the HSE’s Treatment Abroad Unit, based in Kilkenny and with their support he travelled to Uppsala.

PRRT is a specialist form of nuclear medicine, involving infusions of a radioactive isotope to kill the tumours.

He first travelled to Sweden in 2018 and had four treatments every eight weeks, with the last in 2019. "The treatment took 45 minutes intravenously and then I had to be on my own for 23 hours afterwards because of the radioactivity.

"I wasn't worried about the treatment as I had spoken to Tommie and a number of other patients, The most daunting was actually travelling to Sweden, finding my hotel etc., but the help from previous patients was great."

Because the treatment wasn't available here in Ireland, the HSE funded it.

Charlie continued to be scanned every three month. "After 18 months the tumours started to increase in size again and I went back last year for a further stint of four sessions."

While Charlie still has tumours they are stable and he is feeling very well.

"I'm not sure what the next steps are, if they start growing again. There are more treatments coming on board and later this year, a Centre of Excellence, based at St Vincent’s Hospital will begin providing PRRT. The long-term plan is to offer the service to all Irish patients who require it. But in the short to medium term, some Irish patients will continue to travel to Sweden and other countries for the procedure," he said.

Charlie found the NETS Support group and the Kilkenny-based Treatment Abroad Unit extremely helpful and supportive.

"It was great to talk to other patients and Catherine Donohoe of the Treatment Abroad Unit was so helpful organising the flights and paperwork."

The HSE Unit, based at Callan Road, Kilkenny, is the national centre dealing with applications for assistance with treatment abroad, including the E112 and Cross Border Directive Schemes.

Recently the support group for NETs patients and their families, presented a plaque to the Kilkenny-based Treatment Abroad Unit, in recognition of their work. The organisation’s chairman, Mark McDonnell, said “we want to formally acknowledge the professional and empathetic way our members are treated in their dealings with HSE staff.”

Charlie said that the treatment at Uppsala has kept him and dozens of fellow Irish patients alive.

He continues to work, part-time, on the family farm. According to him “ Having something that gets you out of bed in the morning is a great motivator.”

“As Ann sometimes says, we are living with cancer, not dying with it. I hope we continue to be lucky” he says.