Robert Jenkins and Brian Cooper

This story is part of the Guts UK Pancreatitis Awareness Campaign.

On November 2018 Guts UK launched a campaign to raise awareness of pancreatitis and funds for research. Please help us by sharing this story on Facebook and on Twitter tagging @GutsCharityUK.

Robert Jenkins and Brian Cooper’s Story

My name is Robert Jenkins and this story is about my friend Brian Cooper. Brian and I first met at work back in 1979 when we were in our early 30s. We soon became best buds. We were so close that colleagues joked we were like twins! Our careers diverged and merged a few times over the years, but even when we were not working for the same company, a job which involved a lot of travelling abroad together, we kept in touch socially and whenever possible would spent time together on walking holidays. Brian had suffered periodic bouts of biliousness over about three years. He was one of those guys who always make light of being unwell. From the other end of a phone I had little choice but to believe him when he spoke of a bit of a stomach ache and vomiting. I would wish him well, tell him to take it easy, then ring him in a few days to hear that he was as ‘right as rain’ again.

In September 2013 we met up for a week’s walking in the Peak District. When I picked him up from the station, it was clear Brian was very poorly. As soon as we reached our accommodation he went to bed, assuring me that it was just ‘the usual stomach upset’ and would pass in a few days. The next day he seemed worse. He was vomiting bile and I was all for taking him to A&E but Brian adamantly refused, insisting he would soon be fine again. How I wish I knew then what I know now about the type of abdominal pain he was suffering from and what it would eventually lead to. On the third day he was up and about again, his normal jokey self, and we resumed our country break at the end of which we returned home, Brian to London, me to Yorkshire. But the pain and vomiting continued. Whenever this illness came up in our phone chats I would again urge Brian to at the very least see his GP. And he would usually reply, ‘Oh, not to worry. It’ll pass’.

It was a Friday in January 2015, not long after I had got back to Yorkshire after spending Christmas with Brian and other friends in London, that I picked up the phone to ask him for a bit of advice about setting up a new laptop I’d just bought. We spent maybe ten minutes sorting out my computer, then another twenty on general chit-chat, putting the world to rights, piss-taking at my lack of technical knowhow, the usual banter. This was around midday. He sounded absolutely fine. Then out of the blue around 11pm that night my mobile rang and Brian’s number appeared. A strange voice at the other end said: ‘Is that Bob?’ My first thought was that there had been some sort of accident and this was a cop or a paramedic phoning on this behalf. I said: ‘Who is this?’ ‘It’s Brian,’ came the reply but the voice was barely recognisable as his. It sounded like he was in agonising pain. Apparently he had collapsed that afternoon in the street, passers-by had phoned an ambulance and now he was in A&E where they were trying to find him a hospital bed.

The next morning, after a restless night, I drove down to London, let myself into Brian’s house to get the guest parking permit, then continued my journey to the hospital on the tube and made my way to his bedside. He had been given morphine for the pain but that was all the doctors could do at this stage. They explained that it was a waiting game. In one week, if all went well, Brian could be discharged – probably with a subsequent appointment for an operation to remove gall stones. Well, a weekend turned into a week, and one week turned into two, in which along with various friends and relatives I did my best to relief Brian’s boredom by just hanging out with him on the ward. In amongst the visits I tried to inform myself about this disease, of which until then I knew absolutely nothing. I talked to the doctors whenever I could. The news was consistently bad and conveyed in that nervously hopeful tone medics use when they themselves are struggling to understand the disease’s mysterious progress from scans and bloods and come up with ways of managing the many variables, any one of which could trigger a domino effect on any one of a myriad other factors.

January 2015 marked for both Brian and me the first month of retirement. Colleagues and friends for nearly 40 years, now both unattached, we had been making plans for more frequent meet-ups than our busy working lives had previously allowed, not just for short breaks but also long-haul trips back to some of the places we used to visit for the export company we worked for but had never had time to properly explore. Suddenly, all talk of that ceased. The only meet-ups we could arrange now seemed to be in the hospital.

By week three Brian was on a high dependency ward. Complications had set in and he soon moved to critical care. Somehow I managed to hold onto some hope that this was the ‘best place’ for him. Over the next few days I watched with increasing apprehension as the Docs put my friend through some terrible indignities in their struggle to bring him back from what seemed like an ever-crumbling cliff edge. Brian was wired up to more and more machines. A dedicated nurse was never more than a few feet away, monitoring everything from moment to moment. He was getting weaker by the day and it was getting harder and harder to hear what he was saying. His body was wasting away to a skeleton. He was severely jaundiced. It was horrendous. And also extremely scary.

I will always remember the morning I arrived at the hospital to be told that a procedure, started the night before in response to another deterioration in Brian’s condition, had been unsuccessful. Brian would now need to remain in an induced coma indefinitely. Absolutely no-one had warned me that this might have to happen and I’d been with Brian practically the whole time up to that point. It was then that I suddenly realised with horror that the time for goodbyes had already passed. Brian and I would never speak again. No more chitchat. No more putting the world to rights. No more mutual piss-takes. No banter. Nothing.

Talks with doctors became harder and harder to set up. I couldn’t tell if they were just ‘busy’ or if they were deliberately avoiding me. What little they told me was less and less informative as it became clear that they were fighting a losing battle with sepsis and multiple organ failure. From diagnosis to death it took just six weeks. Those six weeks spent watching Brian – my best mate, who was more like a twin brother, really – being slowly poisoned by his own pancreas were without doubt the longest and worst six weeks of my entire life.

Brian Cooper

Brian had previously survived cancer twice and his biggest fear was always that it would return a third time. I sometimes think that if it had he would have survived yet again because so much is now known about cancer and recovery rates have improved hugely. Why? Because cancer affects 1 in 2 of us and research into diagnosis and treatment receives a huge amount of investment as a result. This is definitely not the case with pancreatitis. Although it’s not as common the effects can be just as devastating for all concerned. It’s much harder to diagnose accurately, leading to lots of worry and stress while doctors work out exactly what’s wrong. It can easily be made worse if the right interventions are not made at the right time. Also acute pancreatitis can progress with frightening rapidity, leaving little if any opportunity for those affected to spend meaningful last moments together.

A week later in a shop where I was buying shoes for Brian’s funeral I got talking to one of the assistants. This lady told me an amazing story of her struggle with the same disease some years previously. She too had suffered complications and been put in a coma in critical care, where she spent a total of three months. After she came through it, she spent many more months in rehabilitation. Now she was OK and just living her life. She was one of the lucky ones. Sadly, of the cases of acute pancreatitis in which complications arise, very few survive as she did.

Chronic pancreatitis, with its on/off coming-and-going, can make sufferers’ lives utterly miserable, sometimes for years at a time. Acute pancreatitis can strike completely out of the blue and although most people get through it in about ten days of pain relief and observation, some end up in critical care where they and their loved ones can be really put through a terrible time, never quite knowing what will happen. Those that survive will require months of rehabilitation because being in a coma for months takes a massive toll on mental wellbeing. Those that don’t are sadly condemned by their necrotic pancreas to a slow death by poisoning.

I started my first collection for Guts UK (then known as Core) at Brian’s funeral and I’ve been a regular donor ever since. I continue to support Guts UK because more people – whether patients getting the first symptoms, or GPs diagnosing and referring appropriately, or hospital Gastroenterology departments managing the symptoms and finding the right interventions, or family and friends struggling to cope with the stress and worry – need to understand this disease much better than they do now and Guts UK is funding the essential research required to bring about these changes.

What can you do?

Join in our Kranky Panky Weekend fun and fundraise for more pancreatitis research with Guts UK. Check out some of our ideas here!

Challenge yourself for Guts UK. If you’ve been contemplating a physical challenge – be it a walk, run, cycle, non-stop boogie night or even a sponsored silence – do it for Guts UK. We’ll support you all the way!

More information

Find out about acute and chronic pancreatitis in our Conditions section and read tips and suggestions on how to manage chronic pancreatitis from those affected by this condition.