Written by Standard Issue

Health

Pancreatic Cancer Month: “The day my son was diagnosed, my soul left my body”

The unimaginable pain of losing a child was made worse for Ann Stella as she watched her adored son Robert die a painful death at the cruel hands of pancreatic cancer. She tells her story.

A piece of Robert’s art. He graduated in fine art in 2012.

A piece of Robert’s art. He graduated in fine art in 2012.

Ann Stella’s eldest son, Robert, was 26 when he died from the pancreatic cancer which had been diagnosed on his birthday, a little more than four months earlier. She still can’t quite believe what has happened to her family, but has spent the best part of the past three years with her husband Phillip, and youngest son, Sean, doing her best to raise awareness of the disease which she says took her soul as well as her boy.

Prior to being diagnosed, Robert had been unwell for quite a long time. I would say at least two to three years.

He was attending a local GP at least twice a month. He was a young man and he never really felt 100 per cent. They never looked where they should have looked.

He did suffer from anxiety and that probably didn’t go in his favour because that’s what they focused on. They were sending him to talking therapies, saying he wasn’t able to cope. They sent me to them too. I told them I was worried about my son. There was so obviously something not right.

Robert did not smoke and drank very occasionally mainly due to his being unwell. He’d go out occasionally. He ate all the right things. They said they couldn’t find anything wrong with him. They did blood tests. They were basically trying to say he was a hypochondriac.

Weeks before this happened, I used to say to him, “You’ve had everything done and they can’t find anything wrong.” But he was still saying, “I just don’t feel great.”

He was always very tired and while he tried to live his life as best he could and go out with his friends, he was always the one who had to come back early. He lived at home with my husband and myself and his younger brother, Sean, who is 24 now. Robert couldn’t understand why it was that he felt so tired all the time.

Robert at his graduation in 2012, with mum Ann, dad Phillip and younger brother Sean.

Robert at his graduation in 2012, with mum Ann, dad Phillip and younger brother Sean.

He did a fine art degree at the University of Creative Arts in Farnham, which he finished in 2012. He was a very talented young man and his ambition was to get into concept art through movie making or the games industry. He passed his degree, but he wasn’t up to doing enough work to achieve the result he really wanted. His plan was to do a job for a year or so and save up some money while building up his portfolio at night.

Robert started losing a lot of weight in the months before his diagnosis. He was 6ft 2ins, and before he was diagnosed, his weight fell from 100kg to 75kg. He was vomiting through the night and he would go from one bedroom into another because he couldn’t sleep. I would hear him using the hairdryer on his back to try to help with the pain.

I used to drive him into work because he was so tired. I’d drop him off and pick him up. One day he called me and said he felt horrific and could I take him to hospital. They did various tests and took blood, and sent him home saying he was possibly suffering from a bit of anxiety with the new job.

Two weeks before his birthday, he was very ill and my husband and I brought him into the hospital. They said they couldn’t find anything wrong, but just to be safe, they’d do an endoscopy. That was scheduled for 20 August, his 26th birthday.

“The day that my son was diagnosed, my soul left my body. And that’s not being overly dramatic. This boy meant so much to us. I feel I’m a hologram of myself.”

Sean and I took him in. After they took him through, we were waiting for a long period and deep in my heart knew there was something terribly wrong. We got a call to ask us to come up and when we went in, Robert was just sitting with his head down. He said, “Mam, I’ve got cancer, but it might still be a good birthday if they’ve caught it in time.”

They’d found a 5cm tumour which they thought was in his his stomach. Mary, the gastro-intestinal sister, who has become a very good friend, said ‘don’t panic’ if it’s a stomach tumour things should be fine.

They had to take him in straight away because his body was so emaciated. If you’ll excuse my expression, the shit really hit the fan the next day. They did a CT scan and he was diagnosed with stage four B pancreatic cancer in his lungs, liver, lymph nodes, his kidneys and his spine. The tumour was protruding into his stomach from his pancreas which caused the pain and vomiting.

The day they came into tell him… you should have seen his face. He said: “Have I got two days, three days, two months…?” All their heads were down.

The journey began from then and it was truly, truly horrific. They could never get on top of his pain. They tried their best. The doctors and the surgeons said they had never seen anything like it.

Robert aged four.

Robert aged four.

At that stage it didn’t register in my brain what we were dealing with. I didn’t know much about pancreatic cancer.

He had three bouts of palliative chemo, which was absolutely awful, and during that time everything started to pack in. Then he had to stop having the treatment because he could not cope with the chemo, it was making him more ill. There was no holding it back.

He went into a hospice for a few weeks to try and get his pain under control. He came back home and that was such a nightmare. He needed so much medication. We were phoning up, begging nurses to come out and give him the injections he needed to give him any kind of relief.

He had to go into hospital and everything was failing. He was in terrible pain but he never complained.

On New Year’s Eve night, I remember Gary Barlow was singing on the TV and Robert was trying to sing along. He put his face into his hands and said, “I’m so sad, I’m so sad.” And I knew he wasn’t talking about himself. He was talking about us being left behind. He knew how hard it would be for us, because he knew how much we loved him.

Robert passed on 5 January 2014.

The day that my son was diagnosed, my soul left my body. And that’s not being overly dramatic. This boy meant so much to us. I feel I’m a hologram of myself. I keep going for my other son of course, but my life was completely destroyed.

You can sort of accept that it can happen to any of us. I could go out and get hit by a car. I know bad things – the worst things – can happen to anyone. But I can’t get my head around the fact that my child is gone. And I’ll never accept the way he died and the opportunities which were missed. There were so many chances for them to look closer at what was going on. If he’d had a CT scan two or three years before, they would have caught it so much earlier.

Most people who are diagnosed with pancreatic cancer don’t get much of a warning. Maybe a few months when they’re starting to feel unwell. Robert was different. He felt very unwell for such a long time. That’s where the anger comes into it for me.

Robert's familyEarly detection with all cancers is the key. That’s the only big chance to beat it. If you can’t catch it early, you can’t beat it.

We’ve been very much involved with trying to increase awareness and money spent on pancreatic cancer research. We’ve raised more than £40,000 in Robert’s name – we set up the Robert Stella Cancer Foundation – and have given £24,000 to University College Hospital in London for early detection research. His friends have been incredible.

The trouble with pancreatic cancer is that because the pancreas is in the middle of the body, you can’t feel or see it. The majority of people diagnosed with pancreatic cancer are diagnosed at A&E or after presenting at A&E with an emergency, like Robert did. That’s completely ridiculous.

We’ll be going to Westminster next week with clinicians and campaigners to try to raise awareness. We just want more people to talk about it. The thought that anyone else should go through what our son went through is unbearable.

The grief was and is still overwhelming for all of us. We know we’re not alone. There are lots of journeys and lots of stories. We continue on and we laugh and we joke, but things will never be right. It was a terrible waste of a young life. He was a wonderful boy.

Pancreatic cancer facts

• The five-year survival rate for pancreatic cancer stands at 5 per cent in the UK.
• Five and 10-year survival for pancreatic cancer has improved very little since the early 1970s.
• One person dies of pancreatic cancer every hour.
• Eighty per cent of people with pancreatic cancer are not diagnosed until the cancer is at an advanced stage.
• Surgery is the only treatment which could save lives, yet only 8 per cent of people with pancreatic cancer have it.
• Pancreatic cancer has the lowest survival rate of all the 21 common cancers, with just 1 per cent of patients surviving 10 years after diagnosis.
• Around 9,400 people are diagnosed with pancreatic cancer per year in the UK. That’s 26 people every day.
• Pancreatic cancer is the fifth most common cause of cancer death in the UK.
• Pancreatic cancer is predicted to become the fourth largest cancer killer (overtaking breast cancer) by 2030.

For more information and support, visit www.pancreaticcancer.org.uk
@PancreaticCanUK

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Written by Standard Issue