I will never forget Wednesday 11th December 2019 and that terrible phone call - my darling husband Steve crying “help me, help me, the pain, the pain…..I can’t stand the pain…….”

Steve and I had been together for nearly 19 years, and we were looking forward to celebrating our 6th wedding anniversary in July 2020.  During the week Steve worked as an IT Trainer in Bridgend, staying in a rented flat and coming back home to Reading at weekends.  It wasn’t an ideal arrangement for us but he loved his job and we both looked forward to the time when we could finish working and enjoy our retirement together. 

The previous weekend we had been to London - staying in The Soho Hotel in the heart of the West End, dinner in the fabulous hotel restaurant and going to see Mary Poppins.  Theatre trips like this were one of the things we loved to do and, over the years, we’d seen all the top West End shows. We got back to Reading on Sunday and, as normal, Steve set off back to Wales in the evening, texting me later to say he’d arrived safely. During the week we always phoned each other at 7.00 pm to chat about our day - on Monday evening he seemed OK but said that he’d had a disturbed night because of a tummy ache. Thinking it was probably something he’d eaten we agreed it was probably nothing serious. I later found out that he’d been suffering with stomach pains for quite some time but, typical of him, hadn’t wanted to complain or worry me.  Tuesday evening he called and said he’d had another disturbed night and had decided to come home from work early because of the pain.  This was unheard of for him - he’d very rarely take sick leave, not wanting to let people down and would carry on working while feeling awful.  I realised that this might be a bit more serious. I suggested I drive to Wales that evening to be with him - he said ‘no, I’ll be fine. I’ll call you in the morning’.  I wish I had acted on my instinct and will forever feel guilty that I wasn’t there when he needed me. First thing Wednesday morning he called to say he’d had a better night, the tummy ache didn’t seem so bad but he’d decided to take the day off.  I was working from home and we agreed he’d let me know how he was later in the day. Then, around lunchtime, he called again………

I was in a total state of panic, feeling completely helpless and guilty that I should have been there to look after him. He could hardly speak because of the terrible pain but I pleaded with him to dial 999, and ran to my car to start heading for Wales.  After a short while I got a text from him - ‘paramedics on the way’.  Later I found out they had taken over 2 hours to reach him - I can’t bear to think of the suffering and agony he must have endured during those two hours.  Part way through the journey I got a call from one of the paramedics - he was stable, all his vital signs were OK but they thought it was best he was checked over in A&E. I eventually reached Bridgend Hospital around 4.00 pm to find my darling Steve in a terrible state - barely able to acknowledge I was there, he was slumped in one of the bays, just dressed in underwear and dressing gown, still holding on to his keys and phone.  Despite being given pain relief he was still in agony and we just hoped that something could be done fairly quickly…….how wrong we were. We ended up being in A&E for over 12 hours.

A&E is never a good place to be - but this was just terrible.  For 12 hours were went through the same process time and time again.  Sitting in the packed (and very cold) public waiting area with Steve in a wheelchair just wearing a dressing gown, writhing in agony.  The waiting area was horrendous - people coming in covered in blood from pub fights, other clearly under the influence of drinks, drugs and goodness knows what else, whole families camped out (complete with picnics and coffee) waiting for relatives, repeated visits from what appeared to be homeless people (obviously well known to the staff) looking for somewhere warm to shelter for the night.  The wait went on and on - Steve would be called in to have a blood test, then we would be sent back out to wait several more hours. Steve had a real phobia of needles and injections so the repeated blood tests were just awful for him. At one point the Drs wanted a urine test - rather than showing us into a cubicle, we were given a bowl and again sent out to the waiting area and told to return with the sample !!  Luckily the disabled toilet was free - but trying to push the wheelchair back through the crowds to the reception desk whilst holding a bowl of urine was horrible.  Eventually we were told that one of the blood tests had shown some abnormalities with liver or gallbladder function - so more blood tests were required. By now it was the early hours of the morning. I hadn’t had anything to eat or drink since breakfast and started feeling lightheaded. I asked the receptionist if I could have a glass of water  - I was asked sternly “is it for the patient ?”. I tried to explain it was for me because I was feeling faint but told in no uncertain terms “if its not for the patient you’ll have to use the vending machine” (which turned out to be faulty). 

Around 4.00 am we were told that Steve would have to be admitted for observation and we were given a cubicle to wait in while a bed was arranged.  By now he was feeling worse  and he tried to lie down on the cubicle bed to ease the pain. A passing nurse saw him and angrily said “I wouldn’t get too cosy, you won’t be staying long”.  Fighting back tears I replied “he’s not ‘getting cosy’, we’ve been here for nearly 12 hours and he’s in terrible pain” but the nurse just shrugged and walked away never to be seen again.   Eventually another nurse said that a bed had been found and asked if I was going to stay until morning. Since his rental flat was only a few minutes away Steve agreed it was best for me to go there and try to get some sleep.

The next morning I returned and found that he had been transferred to an individual room in the private wing of the hospital - not because he was receiving private treatment but it was the only bed available. The room was fantastic - quiet, well decorated, with personal bathroom, TV and nice furniture - better than some hotel rooms we’d been in. We looked at each other and had the same thought - “we won’t be allowed to stay here very long”.  He was connected up to intravenous painkillers and fluids and was feeling a bit better.  One of the consultants came to see us and said they had diagnosed he was suffering from pancreatitis. Neither of us had ever heard of this before but the consultant briefly explained what it was and said that the severity of cases vary enormously - “some are like kittens and can be tamed in a few days, but others are like tigers and can take months”. The mention that this could take months was very shocking.  It also became clear there is no actual treatment for pancreatitis - the only thing to do is support the vital organs and wait for (and hope) the inflamed pancreas settles down by itself. There was also a suggestion that it could have been caused by a gallstone so he needed a CT scan.  After a while a porter and nurse arrived with a trolley to take him to the scanning unit. Since Steve could barely move I stood back to allow room for him to be transferred onto the trolley. I was astounded when both members of staff actually took a few steps back and said “Sorry we’re not allowed to touch him. Health and Safety. We don’t want to get sued. He’ll have to get on the trolley by himself”.  I was incredulous - Steve could hardly move, but they were totally serious. I ended up trying to half carry him onto the trolley while they just looked on.  

Within a few hours we were told that he would be moved onto a general ward  - by this time he seemed to be suffering more pain and struggling to breathe.  The results of the CT scan weren’t conclusive but the general opinion was that it was ‘probably’ a gallstone causing a blockage. The blood tests continued, but after an hour or so it was clear he was beginning to deteriorate and requiring oxygen to breathe.  I was ushered into the consultants office - I was told Steve had severe pancreatitis, was very ill and needed to be admitted to intensive care. I was shocked - this had all started as a mild tummy ache but things had changed so quickly. I stupidly asked ‘could he die ? ’. The answer felt like my world just collapsed around me “Yes, he could. I think his family should come to see him this evening”.  I felt like I was in a terrible nightmare, totally alone in this alien environment with the very real prospect of losing my husband, partner and best friend, and that I would soon wake up to find none of this was happening - but it was all real.  Little did I know how long the nightmare would continue.  He was transferred to ICU and connected up to dialysis and blood transfusion machines, a urinary catheter and ‘faecal management system’, intravenous fluids, nasal feeding tube and lots of other monitors.  

Over the next few weeks I stayed in the flat in Bridgend spending every available moment with him, and the rest of Steve’s family made the long journey from Reading to visit whenever they could. He was barely conscious most of the time so I spent every visiting session just holding his hand and being there for him. Some of the time he could hear me, so we worked out a system where he would grip my hand to let me know he’d heard me or to answer a question - one squeeze for yes, two for no.  Over the coming days consultants emphasised that this was a very severe case of pancreatitis, some of his vital organs were shutting down and his survival rate could be less than 50%.  The Drs wanted to perform an MRI scan to try and find out what was happening - but he was so ill even the short journey down the corridor to the scanner was too risky.  One of the Drs suggested that things would be much easier for everyone if Steve could be transferred back to the Royal Berkshire Hospital in Reading so he could be near the rest of his family. Although he was far too ill for the journey at that moment, the Dr said that there could be a considerable waiting time for a bed - so the wheels were set in motion straight away. It was also suggested that the transfer might be done by air ambulance.

About the same time he seemed to change mood - during the brief periods he was awake he was becoming very low and withdrawn.  The lowest point came on Christmas Eve  - I arrived as normal to find him asleep so I just sat, holding his hand. After several hours his nurse quietly said that it was getting very late and visiting time was over. I just couldn’t bring myself to walk away - I wanted him to know that I had been there and to say “I love you” (as I did every single day).  I gently touched his shoulder to see if I could wake him for a few seconds. Eventually he woke up, looked at me angrily, turned away from me and said “Dave, give me a break” and closed his eyes again.   I walked out of ICU and completely broke down.  One of the nurses found me in a terrible state after a few minutes, managed to console me and explained that the mood changes and aggressive behaviour were a result of the cocktail of drugs they were giving him, and he’d probably not even remember saying it.

I went back to the cold, dark flat by myself. While the rest of the world was preparing for all the excitement of Christmas I just broke down again, and cried for hours and hours.  The stress of everything that had happened over the last few weeks and the thought of my husband, partner and best friend dying was just too much to cope with. That night I reached probably the lowest point in my life, there seemed little point in carrying on. Afraid of what I might do I had the Samaritans phone number keyed into my phone…. but somehow didn’t have the courage to call.  During those few days Christmas lost all sense of  joy and happiness for me - for a long time to come I’m afraid it’s going to be an awful reminder of darkness and despair.  

The days of Christmas and New Year came and went - thoughts of any kind of celebration never entered my head. I just followed the same routine - spending hours in the flat alone just staring out of the window, hoping that I could get at least a few hours sleep, then wake up wondering how Steve was, and prepare for the early afternoon visiting period.  Over this period his condition seemed a bit more stable with the occasional encouraging sign, but no real improvements. However he began to have some very distressing symptoms - hearing voices in his head and hallucinating.  One afternoon I was there chatting to him. He suddenly looked very afraid and called out ‘Nurse, Nurse, the hallucinations have started again’ and said he could see goldfish swimming around his head. He looked terrified and I was very shocked - something must be causing this. I noticed that he had been fitted with a Fentanyl patch to administer high dosage of painkiller through the skin. I knew I’d read something about Fentanyl in the past - a Google search confirmed my thoughts. One of the known side effects of Fentanyl is mental disturbances, hearing voices and hallucinations. I was absolutely fuming that my darling husband had been administered Fentanyl without anyone warning us of the possible side effects. I immediately demanded they were removed and made it absolutely clear they were never to be used again. As predicted the awful side effects stopped almost immediately.

On the 8th January I was preparing to head to the hospital as normal when I received a call from the duty nurse - a bed had become available in Intensive Care at the Royal Berks Hospital in Reading, and the Drs had decided Steve was well enough to face the journey, so he was being prepared for the transfer by road. I started the journey back down the M4 and eventually met up with him that evening at RBH. He was quite shaken up and described the journey as like being bounced around in a noisy metal box for several hours - not helped when the ambulance got lost in the one way system near the hospital, but at least he was much nearer home.   It was interesting to see that procedures in Reading were quite different to Wales - gone were all the huge piles of paper files that Bridgend hospital had generated. All his notes were now entered directly onto computer, and all the monitoring equipment just seemed much more modern.  

One issue that was becoming more serious was severe muscle loss. Having spent over a month bedridden he had lost a significant amount of muscle to the extent he could hardly move his limbs and couldn’t walk or even support his own body weight.  It became obvious that, besides the pancreatitis, he was going to need a huge amount of physiotherapy. One of the nurses told me that once he had recovered from the pancreatitis it could take up to 2 years for him to regain full fitness. One of the worst images that will stay with me forever was one occasion I was there while he was having physiotherapy. He would be lifted from the bed by a large hoist, then lowered down into a large wheelchair. He absolutely hated it, complained he was in agonising pain and would sit staring at the clock until he was allowed back into bed. It was heartbreaking to see the sight of my darling husband looking exactly like the terrible images you see of skeletal men in prisoner-of-war camps - barely capable of holding his head up, and bones clearly visible under his thin flesh.

As the weeks passed he continued in ICU - making slight improvements but also having numerous set backs - his blood pressure would get dangerously low, his tummy would get extremely swollen and his temperature would swing wildly - one second shivering uncontrollably, the next second pouring with sweat. At least visiting now was much easier for me and the rest of his family.  There were also some very bizarre incidents - on one occasion a senior Dr arrived in the room, looked him up and down and asked ‘So what’s wrong with you ?’.  Incredulous, Steve explained he had pancreatitis. The Dr continued ‘so how did this happen ? Have you had some kind of injury ?’.  The Dr clearly had not bothered to read any of his notes. He never saw the Dr again.  

By the end of February it was decided that Steve was well enough to be transferred to a normal ward. Unfortunately the actual transfer was not handled well and we were basically abandoned in a crowded ward while the contract nurse wrestled with the computer system, insisting that she couldn’t administer any medication, painkillers etc until she had been able to log in to the computer. I got very annoyed and insisted ‘I don’t care what your ******* computer says, my husband needs painkillers NOW !’   

By this stage he still had the ‘faecal management system’ (basically an anal catheter) that had been fitted in Wales.  Every day he was being given physiotherapy - transferred from his bed to the chair and told he had to sit out for at least an hour.  He hated this and said that the pain from sitting on the FMS in his back passage was almost unbearable.  The skin in that area was also becoming raw and infected.  Questioning one of the nurses it became clear they’d never had a patient with an FMS before and didn’t really know how to deal with it. Once again I started getting very annoyed - a quick search on Google and I found the manufacturers website which gave very clear guidance on the use of a FMS. A patient should not be fitted with one for more than 29 days and under no circumstances should they apply pressure by sitting down with the device inserted. My poor Steve had been fitted with this dreadful thing for nearly twice that period and had been forced to sit on it for up to an hour every day. No wonder he was in agony. I lost my temper again and demanded something was done immediately. The FMS was removed early the next morning. Unfortunately this caused another problem - Steve was then suffering the embarrassment and indignity of uncontrollable diarrhoea - soiling the bedclothes multiple times a day and night. The nurses eventually realised that they were still prescribing a strong laxative. The medication was stopped and the diarrhoea stopped. 

Administering the huge amount of medication and tablets he had been prescribed  became a very hit and miss affair - I forgot the number of times he would be asked by a nurse ‘when was the last time you had …….’, or we would have to remind someone that he was due for a particular medication when it had been totally forgotten.

Around the beginning of March COVID 19 began to hit the headlines. One of the first deaths in the UK occurred at RBH just a short distance from Steve’s ward - I walked past the cordoned off ward entrance every day.  I assume there was pressure to clear as many beds as possible. A Dr appeared next to Steve’s bed one morning and said “you’re looking quite fit and well, I think we’ll be able to discharge you in the next few days”. When it was explained that (a) he had only just come out of intensive care after nearly 3 months with acute pancreatitis and (b) he couldn’t walk the Dr looked slightly embarrassed and disappeared never to be seen again. Unbelievable.

Steve started to show more signs of improvement - his pain was mainly under control. He was able to eat some solid food without being sick - things that we took in for him rather than the odd and almost inedible combinations arranged by the (so called) dietician. But by the middle of March it was clear he was developing a severe infection around the pancreas. There were several terrible nights where I held his hand all night, but could see he was visibly deteriorating  - his blood pressure dropping dangerously low, his blood sugar fluctuating wildly and him starting to suffer severe pain again. It was clear he had to be taken back to ICU and despite the efforts of the Drs he eventually passed away in the early hours of Sunday 15th March. Our final words to each other were “I love you”. He was only 54.

Looking back over the whole experience, a few questions stick in my mind - firstly, what caused the pancreatitis ?  We never really got an answer. Several times a gallstone was mentioned but it still isn’t clear if this was actually the cause or not. Also a high level of triglycerides was mentioned as this can potentially cause damage to the pancreas. Steve had been diagnosed with a high level of triglycerides a number of years previously. However treatment to try and reduce them started causing high visual migraines where, without warning, he would start losing vision in one eye. Because of this he decided to stop taking the medication. There was also a suggestion that it might be caused by a very rare hereditary condition - but this was discounted by the results of a blood test we received several weeks after his passing. So I guess we’ll never know what caused it.

The second question is - could he have done anything to avoid it ?  There doesn’t seem to be anything that would have acted as a warning sign to maybe change his diet, or lifestyle or somehow reduce his risk factors.  Maybe the fact that he had been suffering tummy pains for some time could have been a ‘red flag’ but who goes to their Dr because of a tummy ache and, even if he did, would pancreatitis have been considered as a possibility ?

The final question is - why isn’t there an actual treatment for this terrible and deadly disease ?  Since Steve passed away I have read so many accounts of people who have lost loved ones under very similar conditions. It comes completely out of the blue but all the medical profession can do is provide life support….and cross their fingers and hope it resolves itself.  With things such as cancer and heart disease there seem to be a huge range of treatments available to improve chances of a good outcome.  But just watching someone slowly and agonisingly suffer whilst all the Drs can do is just cross their fingers and hope……….is truly awful.