‘The reason pancreatic cancer isn’t talked about so much is because there are very few survivors to advocate for it’

Niall Rochford is determined to improve awareness of the early signs and symptoms of pancreatic cancer following the death of his wife, Stella, just eight weeks after diagnosis.

“It’s my mission now, having experienced the savagery of this disease,” says Niall about the devastation when his 55-year-old wife was diagnosed with inoperable and terminal tumours on her pancreas and liver on May 20th, 2022. “The reason pancreatic cancer isn’t talked about so much is because there are very few survivors to advocate for it.

“That was the day our lives changed forever. I still remember the sensation of hearing those words and the physical feeling of absolute shock and trauma. We just held each other [when we got the news]. I could see the tears streaming down Stella’s face.”

Recalling how he was brought into a separate room for a few minutes, the managing director of the Ashford Castle estate in Cong, Co Mayo, says he broke down in front of a nurse. “I was shaking uncontrollably. After five minutes, I went back into Stella and said we will fight this. I am 100 per cent with you. We will get through it.

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“We decided not to tell our children [immediately] as our grandchild, Cillian, had been born just three days earlier. We didn’t know how long Stella had – weeks, months, years – as it turned out, she only lived for eight weeks.”

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Stella Rochford was a fit, health-conscious woman who was dedicated to the rearing of the couple’s three children, Zoe, James and Niall, and thrilled with the recent arrival of Cillian, her second grandchild. She loved nature and had a particular passion for horses.

About nine months before her diagnosis, she had suffered from persistent abdominal pain and some back pain. “She went to her GP four or five times over the next six months and she was told to watch her diet due to signs of early onset diabetes,” explains Niall. Stella also had Covid over Christmas 2021, and noticed that she lost her appetite in the following months. “We thought she might have had an ulcer and she thought the pain in her back might have been due to gym work, but no red flags were raised,” says Niall.

And while there was no known family history of pancreatic cancer, back and abdominal pain and poor appetite are potential symptoms of the disease which nobody noticed at the time. On average, “GPs will encounter pancreatic cancer once every five years, so looking for symptoms is not in the forefront of their minds”, says Niall.

By May 2022, Stella was really unwell, while Niall was home from work with Covid. A scan at University Hospital Galway was organised for six weeks later, but her symptoms worsened and the couple arranged to see a gastroenterologist privately. One week later, following scans, pancreatic cancer was diagnosed.

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Over the next eight weeks, the Rochford family was enveloped in the care of their extended family. “Stella’s sisters and nieces – who are nurses and healthcare assistants – dropped everything and put a comfort blanket around us all. My two brothers gave us phenomenal support as well. We were never alone,” explains Niall, who took time off work from the day of Stella’s diagnosis.

“My team at Ashford Castle rose to the occasion, so I had peace of mind about work. They gave me the gift of spending eight weeks with Stella,” says Niall. After two separate bouts in hospital, Stella spent the last five days at home with additional care from the Irish Cancer Society night nursing team and Mayo Roscommon Hospice. “She stopped communicating with us on Sunday and died the following Wednesday. We were all around her when she took her last breath at 3pm on July 13th.”

Looking back, Niall says had they known about the early symptoms of pancreatic cancer, things might have been different. “Part of the grieving process is to look back and see if we could have done anything differently. It is a very difficult conversation to have with yourself, but I firmly believe had we been aware of the symptoms of pancreatic cancer, we would have pushed harder.

“Stella had all the symptoms of pancreatic cancer, but no one connected the dots. I have to live with the burden of knowing that, while this disease is extremely hard to diagnose, with the right awareness and attention, perhaps it could have been diagnosed earlier and Stella could still be with us.”

Reflecting on Stella’s last weeks, he says he believes his wife accepted her terminal illness better than he did. “I didn’t appreciate or accept she was dying until her last few days. I thought we could stabilise her and give her chemotherapy. That was my hope until the end, but we didn’t even have the opportunity for her to write letters to her children and create memory boxes.”

Niall is full of praise for his local community in Cong and the staff of Ashford Castle, who “made the family feel so cared for”. The staff stood outside the castle gates and all along the road to St Mary’s Church in Cong on the day of the funeral. “Stella never looked for the limelight. She loved a simple life. She was a reserved, respectful, dignified person, but we learned the impact she had on so many people and the generosity she showed with simple acts of kindness.”

Niall says getting back to work and spending time with his family have helped him cope. “I went slowly back to work one and half weeks [after the funeral] and I’ve had great support from my team. But I’ve learned to have a better balance to life than I would have had previously. I spend more time at home and am more present with my children and granddaughter.

“There is still a feeling of utter, utter sadness. Work helps. It gives you a level of normality. My job is about being positive and upbeat and leading a team. But what gets me up in the morning is seeing how my children get up and do their best every day.”

The death of Cillian, his second grandchild, from Sudden Infant Death Syndrome in April 2023 was another hugely traumatic experience which he, his children and his older grandchild, Emily Kate – all of whom live with him – are still dealing with.

This week – in the lead-up to World Pancreatic Cancer Day on November 16th – Niall is focused on increasing public awareness of the signs and symptoms of what is known as the silent killer, because pancreatic cancer kills five out of six of those diagnosed with it.

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“I want to save as many families as possible from the trauma and devastation we have experienced, and that starts with awareness of this deadly disease that ruins so many lives,” says Niall, who has organised for 10 top hotels in Ireland to be illuminated in purple at 6pm on November 16th, to focus on the 600 people who are diagnosed with pancreatic cancer every year – 300 of whom die within three months.

Prof Aisling Barry, chair of radiation oncology at University College Cork, says if anyone experiences one or more of the six key symptoms, they should seek further medical attention.

The symptoms are:

1. Stomach pain or back pain;
2. Digestive problems, including poor appetite, indigestion and nausea;
3. Jaundice (yellowing of the skin and whites of the eyes) and/or itchiness;
4. Noticeable changes in bowel habits (light-coloured or floating stools);
5. A new diagnosis of diabetes or diabetes that is harder to control;
6. Unexplained weight loss.

“While of course these symptoms in isolation may have other causes, it’s important that people are alerted to their potential association with pancreatic cancer, particularly if there is a family history of the disease. Unfortunately, when people do develop symptoms, they are often vague and non-specific, leading to delays in diagnosis over several months,” adds Prof Barry.

Meanwhile, Niall Rochford intends to continue to campaign for better awareness of the symptoms of pancreatic cancer. “In time, I would also like to be involved with fundraising for research into early detection and screening for those people at high risk of pancreatic cancer. In Stella’s memory, I want to loudly yet humbly and respectfully help in any way I can.”