At the start of August, I was taken by ambulance to Norwich and Norfolk Accident and Emergency (A&E) where I was mis-diagnosed with a gastric blockage. I was advised to see my GP and get an ultrasound. When I explained the symptoms to my GP, Dr Tulley, she said "Sounds more like gallstones, you're a bit young to have them but we must get that ultrasound done".
Three weeks pass and I report to Royal Berkshire. I had felt fine since Fishcon so didn't think it was going to be an issue. The Doctor who performed the ultrasound said as I lay down that this was a precautionary ultrasound as there was little probability that I could have gallstones.
"Blimey!" he said, "You've got loads of gallstones!"
Back to my GP to be refered for a cholecystectomy (remove gallbladder). It could be a 'a couple of months' and would be in to hospital in the morning and home for dinner with a pack of paracetamol.
Yellow
I woke up bright yellow one morning and feeling absolutely rubbish. Off to the GP again and bounced straight to the hospital. I was sent to the Clinical Decision Unit (CDU), which is where they decide what to do with you. It's like a low-fi A&E. It took a couple of hours in waiting room before a Doctor would see me, during which I felt progressively worse. It was like hardcore flu with breathlessness and lack of apetite.
I met the young Dr James Corbett, who explained that I probably had acute hepititis (an angry liver) and that this was probably caused by gallstones escaping the gallbladder and getting trapped in the bile duct. They "took bloods" - three vials of blood (I hate needles), fitted my first canula - a needle that inserts a soft tube into a vein to which a drip can be attached. James was proved to be correct on all counts. He found me a bed.
CDU is a traumatic ward to stay in. Many of the people in there are waiting for emergency surgery and, on average, old. Kate has blogged what it was like in CDU much better than I ever would. The suffering of others always seems worse than your own. Their confused cries for help is absolutely distressing.
I was moved to Lister ward, a much quieter place where the nurses took good care of me. I say quieter, Lister Ward has a resident 'Frank' who shouts day and night. While in Lister, I lost loads of weight: Hepititis means you don't keep food in long enough for it to be any good and you sleep for long periods of time. I was on a drip and lost 6kg in about 6 days.
I had to wait a few days for a endoscopy (actually an Endoscopic Retrograde CholangioPancreatography or ERCP). This is where they stick a camera down your throat and through your stomach. The doctors needed to know that the gallstone was not still blocking the bile duct into the intestines. The waiting game was lengthy as the hospital had run out of rooms and X-Ray needed the room they had me scheduled in. While waiting, I was NIL-by-mouth, which means that I wasn't allowed to eat or drink anything. For someone who is suffering from malnutrition and starting to feel like they want to eat, it was gutting.
You're asleep (not unconscious) when they do the ERCP but beforehand there is an alarming amount of "trussing up". Particularly strapping this ball-gag like thing to your mouth but a ring instead of a ball. Once awake again, I had a sore throat (which is normal) but no other ill affects. They didn't find the stone. Being made to wait for a few days meant my system had cleared itself. The endoscopy had been pointless.
Although weak, the Hepititis did subside and the Doctor felt it was time for me to go home. He perscribed two weeks of bed rest. As much as I was happy to leave, I was sad for the other people in my 'Bay' (a group of beds the ward is organised into) who were destined to remain a lot longer.
They could not take my gallbladder out when I was ill with Hepititis (too dangerous) but once well again, they still could not take it out because I needed a senior surgeon who specialised in 'upper GI' and there wasn't one assigned to the emergency list that week. It sounded like the babblings of Gilliam's Brazil.
Pancreatitis
After three days at home steadily feeling better, I had a temperature and more abdominal pains. Off to the Doctor we went and she sent me straight to hospital again. Back into CDU but as it was a weekday, the unit had a higher tempo and I was seen and dealt with in a few hours. They took more blood and diagnosed me with Pancreatitis, or pancreas infection. Aparently dangerous and often caused by the endoscopy I'd had a few days before.
I was sent to Hopkins ward with antibiotics for monitoring in a very weak and poor state. When they told me I was going to Hopkins, I thought I heard 'Hawkins' and the only thing that jumped to mind was that a ward named after Hawkins would likely be the place I'd die.
I was in Hopkins for only a long weekend, sent home with some antibiotics. It was a nice quiet ward and I slept pretty much the whole time there. I was home Tuesday morning, feeling a lot brighter than before.
When stones attack
When a stone starts, it's like a stomach cramp - just like when you've eaten far too much. However, you also feel a little feverish and fatigue sets in. Like someone has drained all of the energy out of you. Movement laboured. Unlike a stomach cramp, the pain builds and is a constant.
Writhing about doesn't help but you do it anyway because you feel like the pain should go away. As the pain builds, you will start sweating and writhing more. You can't help it. You know it must look melodramatic but you feel like its the only thing you can do.
Your perception of reality starts breaking down, you will do anything for the pain to go away. I called for help, demanded all sort of ridiculous things and sometimes became angry. I know I groaned a lot, it didn't take the pain away but felt like some kind of pressure release. It did get worse but this was the point I was at when the GP eventually arrived the following Friday.
She had arrived a few hours after Kate started the ridiculous telephoning of NHS Direct, then Surgery then Locum Dr. She knew what the problem was: gallstones on the move. It took a couple of hours for the Doctor to arrive that declared it was biliary colic caused by gallstones and called for an Ambulance. The Ambulance service told her to phone back as they were busy and could not accept any more non-life-threatening cases.
The Doctor was kind and sat with me for 20 minutes to see if the pain would subside, when it didn't, she gave me morphine.
I barely felt the needle go into my bum and cared nothing for dignity. When delerious with pain, you expect the relief to be instant and when it isn't (takes between 10 and 20 minutes), it's distressing. The most powerful painkiller without sedation and it's doing nothing. Eventually, the 'edge' of the pain starts to decline. The sharpness of it fades and you're left with just the gut wrenching part. Then that goes too. As the pain subsided and I relaxed, the Doctor left. The ambulance would be at least 3 hours.
Royal Berkshire over capacity
It was half five on a Friday when two gents in an ambulance came to pick me up. The morphine was still ploghing through but it had been nearly six hours since the attack had begun so I imagine the stone had made most of its journey by then. The paramedics apologised and explained that they had nearly got to Lower Earley an hour before but was sent on a fools errand across town in the Friday rush hour - only to be sent back. They had been called in from Newbury.
Upon arrival at A&E, there was a queue of ambulances. The driver called through to the paramedic sitting next to me in disbelief. Once parked up, we left the ambulance and me and my two paramedics waited in the corridoor by the reception desk in a queue. Kate was led off to a waiting area. Paramedics from all over Berkshire had been called in to RBH that afternoon. Fatigue had replaced pain for me, I just wanted to get into a ward where I could be given painkillers for the next time it happened.
An hour passed before I was wheeled into a bay in A&E and another 30 minutes before they fetched Kate. The whole place felt like a shambles. No-one knew what was going on, the paramedics attempted to find a nurse to do a handover but failed again and again. It did eventually calm down but I felt like the care I was receiving was terrible. I waited for hours in A&E before a consultant Doctor took one look at me and declared I should go to a ward and be given a Patient Controlled Analgesic (PCA) machine with morphine in it. You press a button and get a hit of morphine - not too much to overdose but enough. Wait three minutes and hit the button again. Pain relief on tap. Pity they took it away two days after.
Unfortunately, there was no space in a ward so I had to wait in A&E while they found a space. I ended up in Kennet Ward, an orthopaedic ward (rather than a Gastric one) because that was the only place they could find.
I was seen by the same set of Doctors that night, they had added me onto an emergency surgery list, which meant I would be operated on after the weekend. They needed a Magnetic Resonance Cholangiopancreatography (MRCP) or an MRI scan for the gallbladder to see what damage the stone might have done. That, I was told, would be Monday. Try and eat something, stay off fatty foods.
Although exhausted, I felt OK during the weekend and read some Peter F. Hamilton. Monday was Nil-By-Mouth again but the MRCP was cancelled late in the day, so I had it Tuesday morning. Tuesday afternoon the Doctor declared that no stones were found outside the gallbladder (a good thing) and that they would operate on me Wednesday, home Thursday "Yay!" I thought.
Wednesday was Nil-By-Mouth all day. It got to the evening when a Doctor came to explain that more life-threatening cases had come in. She was surprised that I had not had dinner or lunch as it was obvious by lunchtime that I would be not done. So I had been starved all day for no reason. Poor communication. I tried to eat something but all that was left were terrible sanwhiches and that which Kate had bought me from M&S.
Thursday was Nil-By-Mouth all day too. When it came to 17:00 and it was obvious I was going nowhere, the nurses tried to find out if I could have dinner but the list said I was still go. Later that evening another surprised Doctor got the sharp end of my temper. Once again, it had been obvious from early on that day that I would not be operated on, bumped to the bottom of the list again. I complained about the lack of communication and he tried the line "We will strive to positively improve communication with the ward.". Fortunately, I am allergic to management bullshit and had an acute, sudden reaction, giving him a piece of my mind.
He then tried to fob me off with the medical guilt trip bollocks: "I know you're disappointed that you weren't operated on today but there were other people with LIFE THREATENING CASES that needed urgent attention...". It's a line that says: "If you keep complaining, you're a selfish cunt.". He clearly wasn't listening, so I informed him again that the reason I was pissed off was that I had been starved for most of the week because the nurses are unable to find out whether I will be going to surgery when it is painfully obvious to the surgeons that I am not. I had already lost 9kg since the Hepititis and was very, very hungry. The boredom of waiting I can handle; the anxiety of another stone leaving and causing havoc, I can repress; starvation through lack of fucking communication I shall not stand for!
I wonder how many poor patients, too weak or bamboozled by junior Surgeon's management bullshit just accept what their told without complaint and stiff upper lip.
All the way to theatre and back again
Friday, I was Nil-By-Mouth again. I was getting used to it by then. The Doctors came round early in the morning and said I'd be done by lunchtime. Towards lunch I was changed into the gown, signed all the forms, removed my wedding ring and was delighted to see the trolley turn up.
"At last!" said Nieve, the Nurse who had been on-shift most of the week.
I trundled up to theatre and lay in the anaethetic room while they went through the usual questions of allergy and health concerns. Just as they were getting the anaethetic ready a man in a white had on a mobile phone stormed in, told everyone to stop and said a consultant was having 'a meltdown'.
"We must look terribly unprofessional." said a friendly Asian fellow.
"I wouldn't say that to anyone who might be able to cut me open." I replied.
Sure enough, it wasn't my time and they wheeled me back to the ward. Another five minutes, I was told, and I would have been under and into theatre. I remained Nil-By-Mouth for the rest of the day but to no avail.
PALs
By this point my parents had got back from their holiday and my no-nonsense father was blowing magma down the phone to the PALS: Patient Advice and Liason Service. It appeared that there was a nurse with the special job of looking after people going to surgery and she had been off for the week. There was no-one to do her job in her stead so it didn't get done.
The ward Matron and Mr Goede (one of the lower GI surgeons) apologised again Friday afternoon. He said there were only three senior surgeons that could do the operation, one was away, one was on emergency duty (Mr Booth) and the other one was 'new'. Mr Booth was going to be the one to do it. He explained that there had been an unprecendented number of emergencies but after some pressure admitted that the hospital was grossly over capacity. Today they had run out operating theatres. Other days they had run out of senior surgeons. When a system like a hospital is over capacity, it stops working.
He also explained there was another list, filled with those people scheduled to come in and have their gallbladders out. Although I was more urgent than all of those patients, I could not get onto that list because I would bump someone off. Bumping someone off would mean that they would not be done for another 2 months and scheduled operations delayed for more than 28 days meant that the hospital would be fined lumps of cash. I could not get angry with Dr Goede because he had none of the swagger of the young Doctor, he had the gravitas of someone who knew my case and saw through to the very heart of my frustration. I'd almost say he shared it.
Revenge
As Mr Goede left, I could feel my revenge fuelled gallbladder kicking a stone out. It was uncomfortable in just the way I described above. I knew what it was. I told the nurse. She got me painkiller pills and told me to wait for an hour.
I waited. No affect. I had no PCA, I knew morphine was going to be the only cure.
It was now late into Friday evening and hitting the nurse call button would mean a 15 minute wait. Rather than 1 nurse and 1 assistant per bay, there was an assistant but no nurse.
More tablets. This time a morphine derivative. Wait some more. No affect. Pain built some more.
I asked for morphine but was ignored. The nurse was rushed off her feet. The assistant had no power to do anything. The pain built. I pressed the button again. Nothing. For ages. A minute seems like an hour when you're in agony.
Eventually two nurses turned up and gave me a morphine injection. I told them I would need a PCA. It worked in 10 minutes and lasted only an hour.
After that the nurse told me that only a Doctor could prescribe a PCA and the duty Doctor was with a critical case. It was the medical guilt trip again but with a stark harshness to it. I can see the nurse silhouetted against the white light with her arms crossed. They could only give me one morphine shot. I asked if there were any other Doctors in THIS HOSPITAL but they answered no and left.
The paid continued to about 2am before it subsided. The Doctor came, saw I was asleep and left. No PCA.
Saturday
The morning was pain free and I was hungry - having not eaten the night before due to the pain. The ward sister would be looking after my bay and explained that they had been short staffed the night before. She apologised but it was plain that there was nothing anyone could do.
Kate arrived and all was well at first. Then another stone arrived. The staff nurse was quick off the mark but still required me to take the normal paracetamol/buprofen mix before going to morphine. However, given the night I had just had, she started the process of getting the PCA sorted. It took about 4 hours to arrive, by which point the pain had reached an epic level and Kate was going spare.
With exhaustion and without pain relief, you start entering an other-worldy state. The pain entirely surrounds your world but you've run out of energy to fight it. I found I was staring off in the distance and that I had nothing left to give. I could still hear people and feel Kate holding my hand but hope of ever feeling better was gone.
The duty Doctor (another James, I recognised) eventually arrived while I was away with the fairies. I had had the canula (drip needle thing) taken out so he needed to do a new one. The PCA arrived (the staff nurse had to go and get it as the hospital porters were too busy) and I was eventually linked up. Frantic button pushing followed and I fell asleep.
To be honest, I don't remember specifics of Saturday because of the pain but Kate said it had been worse than ever before.
Sunday, I rested and as Monday was a write-off (they do catch up on the emergency list on Monday), I waited until Tuesday to be operated on, which I finally was.
I was discharged Wedneday by Dr James Corbett, the very chap who first saw me. I left weak, exhausted and malnourished.
I'll be complaining by letter.
A final word
In another 30 years bits of us are going to stop working and when they do, you will rely on the NHS. There are two sorts of patients: those with someone to sit by their bedsides and cry and those without. Those without are always in a very sorry state indeed.
Just pray you keep hold of your faculties because the patients who are "confused" live in constant horror of everything - even the mundane. It's not about being able to cope, it's about not being able to understand the world.
P.S. I know there will be typos and grammar problems. I'm not going to re-read this post as the whole episode is still very upsetting.