Bowel Cancer Awareness

In memory of Simon Cooper 1964-2019

When Sarah Cooper and her husband Simon went to Kempton Park races in Surrey last March with her mum and oldest son, she knew something wasn’t quite right with her husband.

Usually, he loved to have a flutter on the horses with a civilised pint in hand making the most of the hospitality. But that day, he couldn’t manage a mouthful to eat and drank water all day which was really out of character.

Sarah’s gut-feeling was right – something was wrong. But even a betting person like Simon wouldn’t have predicted the odds of what was to happen.

Just nine months later, on Boxing Day, Simon passed away from advanced bowel cancer aged 55.

After seeing a past article about the Be Cancer SAFE initiative which looks to raise awareness of all types of cancer, Sarah contacted us to bravely share Simon’s story with our readers in the hope that it saves or prolongs another person’s life.

Simon’s Story

Often regarded as a cancer that generally affects older people, with nine out of ten people diagnosed aged over 60, many people under that age may overlook or dismiss any symptoms related to bowel cancer.

But over 2,400 people under 50 are diagnosed with the disease every year and, as with all cancers, the earlier the detection the easier it is to treat.

Sadly for Simon, his cancer was picked up too late and quickly advanced to stage four. But other than chronic constipation, which he’d always suffered with and didn’t think was a change in bowel habit, Simon showed no other obvious symptoms.

He wasn’t obese or overweight but neither did he lose weight. He’d always led a very active lifestyle, loved fishing and was a junior football coach which is how he met Sarah in 2008 when their sons played for the same team.

Looking back, Sarah says Simon did begin complaining about feeling full or bloated in summer 2018, but they were on a cruise and put it down to over-indulgence on the all-inclusive.

Similarly, he was often fatigued after work but brushed it off as his age – he wasn’t in his 20s anymore, after all.

One of his main health concerns was his bowel habits which Sarah says were never great but, being a typical bloke, Simon downplayed it as ‘that’s just how I am’. He worked on the railway and could be on six-weeks’ worth of night shifts which didn’t help maintain a regular toilet routine.

Desperate for a solution to his persistent constipation, he visited his GP and also sought private help through his Westfield Health plan. But every time he was told to try stool softeners or laxatives to stimulate bowel movements. It was even professionally recommended that a pint of beer would help get things moving.

Last March, Sarah went to Poland with her youngest son while Simon stayed at home due to work commitments.

“It was never like him to complain but he phoned me one night in agony with stomach cramps, bloating and constipation. I told him we’d get something for it when we got home. He was advised to take eight boxes on lactulose at the maximum dosage of three sachets a day.

“Nothing happened so we went to see his doctor who took his bloods and sent us home,” Sarah says.

The blood tests came back clear and, unsure as to what could be causing Simon’s issues, a colonoscopy was booked for further investigation. But his condition worsened that night. Sarah took him from their home in Swinton to Rotherham Hospital’s A&E department where a scan showed thickening of his bowel.

Back at home and unable to rest, Sarah spent the night searching the internet for what that meant, scrolling through endless articles related to cancer. But still, she tried to stay positive and hope for the best.

The following week Simon returned to hospital for the colonoscopy, but Sarah’s optimism began to fade the longer she sat in the waiting room.

“He was in there for ages so I knew it would be bad news. They’d found a tumour in his rectum which was hidden so it hadn’t shown up on any previous scans. They said it could have been a polyp that had grown over three or four years.”

That was last Easter Thursday at 4pm which Sarah says made the news even more incomprehensible as the hospital was technically closed until the Tuesday. How do you go home and carry on as normal with Easter celebrations when you’ve been given that news to digest?

“Instantly we went from a normal couple to one with cancer. Simon was told he’d have radiotherapy and chemotherapy to try and shrink the tumour, they’d operate to remove it and he’d probably have to be fitted with a colostomy bag.

“Everything we loved to do as a couple may be taken away from us – food, drink, holidays, socialising – but naively we were thinking it would just be a rubbish year and we’d get over it.”

While waiting for his oncology appointments, Simon was assigned a Macmillan nurse to guide and support him through his cancer experience. He also made the decision to return to work.

But again, Simon’s condition deteriorated to the point where Sarah woke up three consecutive nights to find him in the bath as it was the only way to ease his stomach pains.

On this third night she took him straight back to hospital where doctors performed an emergency ileostomy to remove part of his small bowel.

“Nothing about the procedure bothered him, especially not the stoma bag. He was just filled with hope – and relief that some of his pain had finally gone.”

Following surgery, Simon was referred to Weston Park Hospital for further scans and to begin his cancer treatment. But his hope began to wane.

“We called it bad news Friday because every time we went there was something else. First, they planned to start radiotherapy to reduce the tumour before removing it, but found it was too big. Instead, they decided to bombard it with chemotherapy. Simon was told ‘statistically’ he’d have two years to live, but I kept saying you’re not a statistic, we’ll get five more years and make it to your 60th birthday for a big celebration.

“Then they found another tumour higher up in his bowel. Then another on his aorta.”

To control his symptoms, Simon was given palliative radiotherapy to give him a better quality of life and more time with his family.

That July, he spent three weeks in Rotherham Hospice for pain management, which Sarah says completely altered her perception of hospices being only for end of life care.

“It really is the most wonderful place and the staff couldn’t do enough for us. I was by his side for those three weeks and they nicknamed us Barbie and Ken.”

Back at home and the couple were planning to spend Christmas together with family, but when Simon went for a check-up in November, they found something on his chest. He was told he had just weeks left to live.

After spending his last days at home cared for by Sarah and his family, Simon passed away on Boxing Day last year aged 55 leaving behind his wife and the couple’s four grown-up children.

“He was, and still is, the complete love of my life. In February this year we would have been married for eight years, together for 12. Meeting him truly changed my life and we shared so many happy years together but it will always hurt that we wont grow old together like we should have.”

The team at Be Cancer SAFE send their sincere thanks to Sarah for sharing Simon’s story and helping to raise awareness of such a sensitive subject.

What is bowel cancer?

Bowel cancer is one of the most common types of cancer diagnosed in the UK, with over 40,000 cases detected every year. Most people diagnosed with it are over the age of 60, but it can also affect people in younger age groups.

Like all cancers, early detection greatly improves survival rates. When diagnosed at its earliest stage, more than nine in ten (92 percent) of people with bowel cancer will survive their disease for five years or more, compared with just one in ten (10 percent) of people when the disease is diagnosed at the latest stage.

Bowel cancer survival in England is higher for people diagnosed aged 15-39 and those diagnosed aged 60-69, compared with other age groups. In particular, the introduction of bowel screening for people aged 60-74 is improving rates of early detection.

Anyone aged 75 and over can also request a test kit by calling the Bowel Screening Helpline on 0800 707 60 60.

After being suspended during Covid-19, the bowel screening programme has now resumed. This will be a phased return based on clinical priority and invitations will be sent to people who are overdue a routine screening. If you are concerned about missing a test, please call the screening hub helpline on the number above for further information.

Screening can find signs of bowel cancer early before any symptoms appear and when it is easier to treat. The introduction of the new FIT (Faecal Immunochemical Test) test has made it easier for people to complete the screening test at home.

Currently around six in ten people take the screening test, so increasing uptake can help save more lives.

The screening test is:

  • Quick and easy
  • Just one small sample of poo
  • Detects tiny amounts of blood
  • Completed in privacy at home
  • Arrives automatically in the post every two years

Being aware of the signs and symptoms of bowel cancer would also have a major impact on improving people’s chances of survival.

The main things to look out for are:   

  • Bleeding from your bottom and/or blood in your poo
  • A persistent and unexplained change in bowel habit
  • Unexplained weight loss
  • Extreme tiredness for no obvious reason
  • A pain or lump in your tummy

Knowing how you feel when you are well is a great way to monitor your health. If you notice changes and you have symptoms that are lasting for approximately three weeks or more, it’s very important to see your GP or other health professional. Early detection of any illness will always give you a better chance of getting the right treatment and getting back to good health.

Further information on bowel cancer can be found at the following links: