Delirium

Total Pancreatectomy: 1 Year On

godley93, , , , , , , , , , , , , , , 3 Comments

The Road to Recovery

When the Scar Was Still Healing

I remember reading a theory about why time seems to go faster as we get older. When we’re younger, we have less experience of the world and of the many situations we find ourselves in as we traverse it. Many situations feel novel, and we are forced to engage our minds and figure out how to navigate them. In doing so, we focus on things and give them our full attention. As we get older, we find ourselves repeating the same patterns. This repetition allows us to go about our life in more of an autopilot mode. Due to this, we do not need to focus so much, falling into similar routines with confidence. This is beneficial to us as it allows us to spend less time and energy focusing on ‘standard’ problems, allowing us to move through them with less stress and by exerting less mental energy. Another consequence of this is that time passes by faster as we find ourselves engaging less and less with the life we are living. And on that note, how on earth has it been a year since my operation?

A year ago yesterday, July 15th 2022, was my operation date. There was a heatwave in the UK when I went into hospital. I remember reading the news as I sat in the waiting room, with the article claiming it could get as hot as 40 degrees. I thought that the heat wave might make being in the hospital even more difficult but I overestimated how aware of my surroundings I would be for the next few weeks. Perhaps during that period in the hospital, I might have felt more aware of my surroundings than I believe I was now. Perhaps I was aware of my surroundings and I am doing myself a disservice by stating that I wasn’t, but I don’t remember feeling hot at any point, so I can’t have been very aware of them. It nearly hit 40 degrees in Manchester and I don’t remember complaining about it, but I’m sure I did.

As I sat in that waiting room, I was surprised by the number of people who were also there at 6:00am. It took me a few minutes to realise that everyone who was there was actually waiting to go into surgery too. It feels like a group of people waiting to go over the top in World War 1 but with next to no camaraderie; we barely looked at each other. When my name was first called, the nerves really kicked in. I was glad that I wouldn’t have to wait in the room for longer, though. As the nurse shouted “Group 1” and immediately said my name, I knew that they were preparing for this to take a while. The surgeon had told me it would probably take a while, but he never estimated anywhere near to the epic figure of 14 hours which I ended up being in surgery for. He had also not mentioned anything about a total pancreatectomy; I didn’t realise it was even possible until I woke up and was told they’d taken my whole pancreas, alongside a shopping list of other organs.

The immediate recovery was brutal. A lot of people who have had major surgery for cancer will tell you beforehand that it isn’t as bad as the chemotherapy, but I don’t feel like that. It is really hard to come back from a surgery like this. There’s a lot of pain and a lot of experiences, which are frankly life-altering, that seem to come hand-in-hand with something as complex as a total pancreatectomy.

I suffered an episode of Delirium during the recovery in hospital, where I convinced myself that the medical team had used me as an experiment to see what happens if you remove someone’s pancreas. During that episode, I demanded that I be transferred to another hospital. It then developed into me believing that I had ostracised myself from my family by kicking off in the way I had, then the treatment team, then society in general, until I finally believed that I was going to be left to die in a prison cell. All of this was happening inside of my brain whilst I ran up and down the ward being chased by medical staff and security, and with alarms going off everywhere. I don’t remember loads of the detail, only my brother crying, my wife trying to convince me to let them inject me with something, and I remember seeing blood dripping from the various places around my body where I had ripped the lines out. That was just an episode, though. The trauma might live on in my head, but I woke up the next day (after being sedated by the medical staff the day before) confused but understanding that I was wrong the day before, and that I’d fallen down a mental slope into a strange place. None of the staff held it against me at all, which genuinely surprised me. When I woke up to Anna, I was surprised she still wanted to talk to me at all. It was a single lapse which I had to move on from; the overall impact from the surgery has been very different.

Whereas the episode of delirium was a single event which I struggle to relate to now, the recovery from the surgery is a long, difficult process. Things as trivial as having to use a commode with the assistance of a nurse are humiliating as a male in his 20s – I never expected that I’d have to do something like that in this stage of my life. Other things which seem trivial on paper were also difficult… I was constantly worried about what I was eating because of the diabetes (when I already didn’t feel like eating because of the pain) and I was adjusting to the huge wound across my stomach, which constantly pulled and hurt. All of it is demoralising in different ways.

There were times in the hospital where I remember feeling like things would never get better. Even after leaving the hospital, it took a long time for those feelings to go. In some ways, I still experience many feelings of helplessness over how things have gone, but they are less severe. Everyone seems to assume that the mere fact someone has survived something like cancer means they should be ecstatic with their life, but it is impossible to feel like that all of the time. I’ve sacrificed a lot to get to where I am and although I’d do it all again, I still have to acknowledge this fact – none of this is a miracle. It took a team of extremely experienced surgeons, nurses and doctors, as well as an incredibly strong network of friends and family to get this far, and that network still has to put in a lot of work to this day. It also took an incredible amount of personal perseverance – I’ve been to the very depths of my own emotional and physical capabilities fighting this, and I still find myself being dragged there weekly, if not daily.

It isn’t actually the diabetes or the cancer or the surgery that causes those feelings for me now, it is the constant problem of feeling sick after eating, the digestion issues (which are an every-occurring problem) and the difficulty that comes with trying to acclimatise back to ‘normal’ life. I’ve had so many experiences where I am in a bar or at a restaurant and I find myself looking around me and feeling like I’m an alien. It is a stupid way to feel, as if I am the only one in the room who could have possibly suffered from such trauma, which I know isn’t true, but it is isolating nonetheless.

Yet, despite so many difficulties, I have felt a quality of life come back that was perhaps unimaginable this time a year ago. The recovery from surgery took a long time for me, and I had to go in and out of hospital a lot in the first 6 months. There were times when I genuinely wondered if it was all worth it or if I would have been better off just living out my days without having had such a major and life-changing operation. I never feel like that anymore, and things have gotten much better for me. My advice to anyone who is facing a similar surgery, whether it is a Whipple or a total pancreatectomy (assuming that the Whipple has a similar recovery arc and comes with similar digestive issues), is to be patient. The recovery is long, difficult and painful, and some of the symptoms don’t really go away. Eventually, time plays its part and it is difficult to remember what it was like before anyway. Similar to when I gave up eating meat years ago and stopped looking at the meat options in restaurants, I now look at people who eat meals without taking creon or injecting insulin as just different to me; I don’t envy them or wish things were that way for me, I just get on with the things I have to do.

Some of that adaptation requires acceptance that things have changed. Personally, I think adjusting your diet is a must, even though all of the dieticians that I have been allocated tend to focus on gaining weight. Gaining weight becomes very difficult when you cannot naturally break down fat. Also, eating enough to sustainably gain weight becomes difficult because eating a lot, or eating things which are too fatty, causes any digestion issues to flare up more easily. If I eat a big meal these days, I feel horrible afterwards. My stomach aches, I feel sick, I struggle to walk without getting nauseous, I don’t sleep well and sometimes it just outright makes me vomit. These are just some of the symptoms, I won’t dive too deeply into the others…

Adapting one’s diet to include more legumes, pulses and beans is a really good way to get a good amount of protein in, whilst also eating things which are easy to digest and good for the body. If you’re also diabetic, they are generally low GI, meaning that they cause your blood sugar to spike less (although I find that sometimes this can be difficult to manage with insulin because I am more used to dealing with other foods which do cause it to spike, so I end up either over-injecting, or trying to split my insulin dose).

And the last point nicely highlights another huge adjustment area – being diabetic. If you have the benefit of knowing that the surgery you will be having is a total pancreatectomy beforehand, you will have time to do research on being diabetic. I woke up to the news that they had taken my entire pancreas, and although I was warned that diabetes is something which can occur after pancreatic surgery, I hadn’t been warned that this was likely in my case. Without any pancreas in the body, the chance of diabetes jumps to a mere 100% certainty… Without the organ which produces the insulin, you’re going to struggle to create insulin – it ain’t rocket science.

For the first week or so, the nursing staff helped me regulate my blood sugar with the help of a machine, but then the staff started to encourage me to try and manage it myself with their help. Some of the help I got early on was questionable. I was being told to inject a blanket 7 units with every meal, which is a really strange approach to managing diabetes, but I guess they have to get you to start somewhere. It just doesn’t make sense because even if I eat the same meal, I do not necessarily inject the same amount of insulin. There are so many factors. Just injecting 7 units (which, by the way, is a lot of insulin) for any meal is a very bad way of managing your glucose levels, so it isn’t setting the patient on the best path. The hospital did also give me orange juice with every meal, though, which is also bad practice. Nowadays I’d be delighted as I’d keep them in my satellite store for when my blood sugar drops, but I didn’t have a clue what to do at the time. I just knew that juice was bad an full of sugar, so I stayed away from. it

Due to the trauma from the operation, the body will process insulin very strangely for a long time. For me, I couldn’t manage it properly for at least 6 months, partially because I didn’t understand how to, but also because my body would use insulin totally differently day to day. One day I would inject barely any insulin all day and still find my blood glucose levels diving too low, whereas the next I would be injecting more and more, but my levels just wouldn’t come down. It was an incredibly stressful time, and I had at least 2 minor breakdowns. At one point, I was shouting at Anna asking why no one was helping me, before hitting myself repeatedly in the head with my phone and saying that I want to be knocked out so I don’t have to deal with it. It doesn’t work like that by the way – being knocked out just means someone else has to deal with it, and they probably won’t do as good a job as you, so I’d recommend staying as lucid as possible when managing your blood sugar.

My wife and my brother-in-law planned a meal for me yesterday with a few of my good friends. Until they mentioned that they wanted to do a meal for me to celebrate the anniversary of the operation, I didn’t actually realise the date was coming up. I’m really grateful to them for remembering it for me. It does feel special to be able to celebrate such an occasion, and it helps to remind me how lucky I am to be here. Despite all of the limitations that come with a huge surgery like this, it has still allowed me to find a good quality of life. If I can go out with people I love on a Saturday night, eat half a pizza and have a drink, I can’t be doing too badly, can I? It may make me feel more ill than it used to, and I may feel exhausted after doing it, but I can still do it. I also went out on Friday night to see a band I love with a few people that I love, so it’s been a really good weekend overall.

Yet, for all the good things I have, I still wrestle with a lot of grievances about how things are. I’m still not used to how fatigued I feel all of the time. I want my body to do better, to allow me to do more. I’m finding that I can’t spend huge amounts of time in the kitchen cooking and baking because it tires me out too much, forcing me to take short breaks where I have to sit down. If I go out to eat or to a museum, I worry that I’ll start feeling ill with only a public bathroom to retreat into, and they aren’t spaces that you want to rely on to claw yourself back to health… But it all manages to work somehow. Time’s script continues to be written around us, despite it seeming totally illegible in the moment. I only seem to gain any perspective on a situation when I am reflecting on it, which is why posts like this are beneficial, though I wonder if they add much value to someone else who is going through something similar. I don’t know how unique my experience is; it is difficult to find people who have been through it all. It just doesn’t seem to be common.

So, although having a total pancreatectomy has changed my life a lot, I am finding more and more that there is still plenty to enjoy on the other side of it. It isn’t an easy thing to experience, and the recovery is seriously tough, even ignoring the substantial changes the surgery permanently forces on your body, but there is plenty of light at the end of the tunnel. I’ve recently spoken to someone who was due to have the same operation, so there are obviously people out there who are having it, but those people seem few and far between. Hopefully with the development of new treatments for cancer, operations like this won’t be necessary anymore, but until that is a reality, I’m all for them taking place. If it allows someone like me to go out with their friends, eat pizza, and boast about being cancer free, it’s got to be worthwhile. Let’s hope I’m around to write a 2-year review next year!

Delirium

godley93, , , , , , , , , , , , , 4 Comments

‘Delirium’ wasn’t something I was aware of before being in the hospital after my operation. For the first 5 days of my hospital stay, I still wasn’t aware of the term. If someone had asked me to define it beforehand I’d have probably said it sounds like a term referring to someone losing their mind, or feeling very confused. Perhaps I’m blowing my own trumpet a little bit as that would have been very close to the definition, far closer than I probably would have been.

The term was brought to me in the form of a leaflet, handed to me by my fiancée Anna in the morning after I’d had a dance with the ailment the day before. This was about 6 days post-surgery and was around the time that I started to properly consider the seriousness of what had occurred during the procedure. She had the leaflet in her possession because the nursing staff had given it to her the day before, to try and help explain the erratic behaviour I was displaying. My memory of the whole thing is very hazy now, but I’m going to try and recall what I can, whilst trying to explain how I ended up there, or how I think I did. Some of the blanks have been filled in by my family members who were present during the event, so some of what I write will be based on things I’ve been told, not direct experience or memory.

It is quite difficult applying logic to a situation that, by definition, defies sensible logic. My goal in trying to do so is twofold: firstly, to try and explain my understanding of what happened to my family who witnessed my quick mental decline that day, and secondly, to shine some light on a phenomenon that I was totally unaware of before it had happened to me. Also, in the name of the blog, it feels right to document both the highs and the lows of this experience, and this was probably the most volatile event that has happened to me so far. It far outstretches any experience that I have had in my life up to that point, and I am still processing what happened. I’m not sure I’ll ever fully understand it. It is the darkest place my mind has ever been to.

Delirium is defined by the NHS as below. They define the ailment, as well as the causes of it.

‘Delirium is a state of mental confusion that can happen if you become medically unwell. It is also known as an ‘acute confusional state’. Medical problems, surgery and medications can all cause delirium. It often starts suddenly, but usually lifts when the condition causing it gets better. It can be frightening – not only for the person who is unwell, but also for those around him
or her.’

I can vouch for the definition and causes. Everything descended extremely quickly for me, and everyone around me was pulled down into that negative spiral. For my mum, fiancee and brother Greg, it was probably incredibly traumatic at the time, and perhaps still is. They also did not know about delirium, and their introduction to it was a family member spinning out of control, accusing the staff of trying to kill him, pulling out lines that were stitched into his body and screaming accusations of medical malpractice at every person in overalls who came within 2 meters of his being. It is hard to describe how things descend to that place, but I’m going to try.

To provide some context, I had been moved into an individual room a few days prior. My stomach had been very bad since the operation, and the doctors were worried that I might be harbouring some form of virus that could spread to the other patients. I think that is why I was in that room anyway; this is all very hazy to me now. The room was small and only had two thin windows which, from the angle I could see out of from the bed, looked directly at a brick wall of an adjacent building. There were lines attached to my neck, back and hands, so I could not move far from the bed. The lines in my back and neck were actually stitched into the skin, so they could not be removed to allow me to move around. This is to secure them in, due to their important function during the recovery process. It all meant that I had been within a meter of my bed since waking up from the operation. It is also incredibly uncomfortable constantly having lines attached to your body. Personally, I started to feel sub-human, attached to all these machines and relying on others to do almost everything for me. I’d only just had the catheter removed, ‘upgrading’ to the graceful world of the commode… the world of surgery is far from glamorous.

I believe it was the Wednesday after surgery. That morning, I had decided to open my laptop for the first time since my operation. I don’t think that I intentionally set out to research how a full removal of the pancreas affects the patient that morning, but that is where I ended up. The topic had started to sit heavy on my mind. Prior to the operation, I had not been warned that a full removal of the pancreas may be on the table. I’m not suggesting that this was necessary, but if there was even a 1% chance of that happening, I do think that discussing it beforehand would have helped to ease the stress of hearing that it had happened post-surgery. Again, I don’t want to sound ungrateful for what has happened, and I am not accusing any individuals of doing anything wrong, but I would suggest that in future cases, this topic should be broached in the meetings before surgery if it is a possibility. It would allow the subject to process what that may mean beforehand when they are in a stable state with a normal functioning mind. I was processing the news in a very unstable state, with a mind being clouded by all of the painkillers, general anaesthetic and whatever else was being pumped into me. I had an epidural sewn into my back, a line attached to a central vein in my neck and various drugs being pushed into my system via the other lines in my hands and arms. Trying to navigate all of that, alongside the fact that I am now diabetic and have had half of my organs removed (Warning: major exaggeration used to gain sympathy) is bound to be tough for anyone.

At the time I did not realise just how much this was all messing with my brain, but I appreciate it far more now as I reflect. Looking back, I struggle to feel like that time recovering in the hospital even happened to me because my brain was so abstracted from my normal reality. I couldn’t focus on anything – I constantly felt bored, fidgety and I genuinely felt like the situation was never going to improve. The result was a constant state of perceived uselessness, depression and an overwhelming sense that everything was descending into a place of utter hopelessness. It was incredibly difficult to deal with and with every day that passed, I had a slightly clearer mind that was trying to process these things, which was actually more damaging than good in the medium term.

As my ability to think more normally was coming back, I was still under the influence of a concoction of powerful drugs, but I could not recognise that in the moment. As far as I was aware, I was thinking and feeling as I would normally, just those things that I was thinking and feeling were far more extreme and volatile than normal. Well, I was in a time of extreme volatility, so that doesn’t seem strange, does it? In this world, it is easy to find dark thoughts and believe them as logical truths, especially if you are the type of person who has a tendency to dwell on their own thoughts. I’d put myself in that category. It is far easier to identify this now, as I sit in a more normal frame of mind, but at the time, it was incredibly scary and depressing, feeling that my life had irreversibly changed and that I was on a collision course with death, simply counting down the days until my body finally gave in to the growing list of traumas it was accumulating. I was utterly convinced that this was the new me – a person defined by inconsolable grief, anger and fear. Grief of my former life, anger that this had all happened to me without my consent, and fear that it had set my life on a journey towards destruction and, ultimately, death.

I sat Googling ‘full removal of the pancreas’ and read on multiple websites that the procedure was extremely rare, that not a lot was known about it, and that the pancreas is involved in the regulation of hormones in the body which is not fully understood, so could not be easily accounted for post-surgery. The more I read about how uncommon the procedure was, how difficult it is for the subject to adjust to life post-surgery and the drastic changes it has on your body functioning, the more I convinced myself that the surgeon had used me as a lab rat. I created a narrative in my head – I was young and healthy, other than my diagnosis, yet I had stage 3 pancreatic cancer. The situation was incredibly unusual, but that presents a unique opportunity to those in the medical field. Why not try this experimental treatment on this young, unusual subject – it is the best opportunity to see how successful a full removal of the pancreas can be, right? I became utterly convinced that the dice had been rolled by the medical staff, and that my life was the stake that was hanging in the balance.

Alongside this, there had been some tension between the nursing staff and the surgical team that morning. I think they had been trying to hide it from me, but it was palpable. That morning, the surgical team had come to look at the drains attached to my stomach and determined that they could now be removed. The drains are two bags attached to pipes which are inserted into your body. They are there to allow any excess fluid to drain out of your body. The bags then have a plastic valve end which can be opened, allowing them to be emptied out. I had a drain in either side of my stomach, one on the right and another on the left. Although they were collecting a lot less fluid at that point on day 5 post-surgery, they were still amassing a fair bit of liquid each day. After the surgical team had inspected it, they had asked the nurses to remove the drains. I could immediately tell that the nurses were unsure about doing this and felt their hesitation. I waited for a few hours that morning, but the nurses did not follow through on the request. They were speaking to each other in their native language a lot, and I could sense some unease in the air.

A little later on, one of the surgical team returned and asked why they had not been removed. I responded that I wasn’t sure. She then left the room. A bit later, I heard a conversation outside the room where another member of the surgical team was complaining about the nursing team letting down the very good reputation of the HPB unit at Manchester, which was “one of the best in the world”. The whole thing felt very manufactured and I lay there confused about why they were having such a conversation in close proximity to a patient. It was all a bit unusual. Eventually, the nurses did remove the drains, but they seemed very hesitant about it. I think they had my best interests at heart, and they felt that too much liquid was still coming out to remove them, but they are ultimately there to carry out the wishes of the surgical team, who are far more experienced and knowledgable in these areas.

Between my research that morning and the sense of tension building among the medical staff, I was starting to feel very uneasy. By the time my mum and Anna showed up to visit me at around 13:30, I had wound myself up too tightly, to a level that I could not be unwound. I was still conscious and thinking somewhat straight at this point, though. As soon as they entered the room, I asked them to close the door. I told them about my theory, how they had done an experimental procedure on me and that I was being used as a test-case for a new type of treatment that they had little evidence of whether it would be successful or not. I told them that we need to try and get me to another hospital to be treated and give me the best chance of long-term survival…this is where I started spiralling a little more into madness, and where my memory starts to get hazy. Anna and my mum were listening to me clearly at this point, though, and they were very concerned.

I can’t remember how it happened, but the staff started to realise that something was going on. As they realised the seriousness of what was beginning to occur, more senior members of the surgical and nursing teams started to show up to try and calm me down. This only encouraged me – in my mind, they were realising that their plan had been foiled and they were now terrified that they were going to be going to prison for malpractice, or at least exposed and their careers were over… That is genuinely what I thought. By the time my surgeon himself showed up, I was absolutely certain that they were terrified that I had exposed them. I started to get my phone out and record them. Accusations were starting to come – I told them that they hadn’t been managing my diabetes properly and that my blood sugars had been incredibly high. I started to demand that they show me all of my data, as they had been regularly testing my blood sugar levels which were recorded on a system. When they told me that they couldn’t because of data laws, I felt even more firm in my beliefs. They were scared that the data would expose them, I thought. By this time, I was fully spiralling out of control.

At some point, I turned and looked at the machines behind me which were hooked up to my body. This is where my brain was starting to bend reality. I thought I saw the number ‘9999’ on a monitor and thought the doctors were loading my body with insulin to force me into a coma and kill me, so they wouldn’t be exposed for what they had done to me. It is here that I panicked and started to believe that they were really trying to kill me. I ripped the stitched lines out of my neck and back, something which makes me sick to my core in my normal state of mind. The doctors all screamed out and started panicking… this was starting to get serious, and they were now treating me like a danger to myself as well as them. People do all sorts of things when in a state of delirium, including physically assaulting staff and trying to harm themselves. Of course, I didn’t know what delirium was at the time, and I didn’t see their distress as them being genuinely concerned for me. Everything was feeding my central theory – they were trying to save their skin, and my hard-hitting accusations were threatening their reputation as professionals.

Around this time, my brother Greg was strolling onto the ward to visit me. It’s here that my memory gets very hazy. I remember running up and down the corridor in the ward, blood dripping from my neck and back. Security guards were blocking the exit but I couldn’t get out anyway as it was now locked. I was crying, pleading with Anna, my mum and Greg. “Do you not love me?” I was shouting at them, pleading with them to believe me. Anna was telling me that she believed me, but that I needed to let them help me as I needed immediate medical attention. I didn’t believe her. Greg was crying now and begging me to stop. The little memory I have of it is really horrible. I can’t imagine how it was for them.

All that I really remember from this point on was feeling like I had ruined my life. I had climbed up to a place which was impossible to come back down from, or so I thought. I was convinced that I was either going to a police station or an asylum. The people who had helped me, the doctors, nurses and surgical team, wouldn’t want to help me now anyway, whether they had used me as an experiment or not. It felt like I’d dug my own grave in taking this course of action, and now I had to lay in it. I remember running up and down the corridor, my head feeling like it was going to explode. Anna was going to leave me, my family were going to abandon me, I’d ruined everything. The world was genuinely spinning. I can’t imagine what my heart rate was when all of this was going on, but I bet it was dangerously high. Amped up on drugs and totally out of control, this is where any memories I have of the event end.

Anna tells me that the staff got me a seat and told me to sit down in the corridor. I did this, but then saw a doctor coming up behind me with a needle, which made me jump up and panick. When I jumped up, I spilt some water that I had in my hand all over the floor and then slipped over violently. Finally, the doctors managed to inject me with a sedative. As it took hold of my body, I started to calm down and apologise then, eventually, I must have slipped into a sleep.

I had a lot of very unusual yet vivid dreams. They were vivid at the time, but I don’t remember them well now. My amazing brother Greg stayed with me for 8 hours that day – he was incredible throughout my stay in the hospital, visiting me nearly every day no matter how depressing my company was. I’m not sure if I dreamt this or not, but I think I remember waking up momentarily and begging Greg to get them to kill me. I thought my life was over anyway – I just wanted it to happen as quickly as possible.

One of the dreams that I remember was being stuck in a dark room. There is an episode of the dystopian show Black Mirror where they discover a new method of punishment. It is where they can manipulate a person’s brain to make them feel like they are locked in a room for hundreds, thousands, even millions of years, in a matter of seconds. Despite them not actually being locked in a room, the subject experiences being trapped for that amount of time. I had a dream that that exact thing was happening to me. My mind was screaming to wake up, but I couldn’t. I genuinely thought I’d fallen into a state of absolute madness. I gripped my head and pushed my fingers into my eyes but nothing changes. It was agony.

Rather disgustingly, whilst I was passed out, I was apparently repeatedly ‘soiling’ and ‘wetting’ the bed. The nurses were having to clean it up whilst my brother, mum or Anna, whoever was taking the shift of sitting with me at that time, temporarily stepped out of the room. It is pretty horrific to learn these details and I really debated whether I wanted to include them in here, but I think it emphasises just how dark things can get in this state. My family had to witness it and the incredible nurses probably did not even see this as a ‘standout’ event – it is probably just another day for them. I really don’t understand how they do it. Hopefully, by speaking about it, it emphasises what amazing people are working in these jobs, and how brutal the day to day reality of it can be.

When I eventually woke up, it was the next morning. Anna was asleep in the chair next to me. I thought that I had dreamt the whole thing, but I felt immeasurably happy that it was over anyway. It was only when Anna passed me the leaflet titled ‘Delirium’ that I started to realise it had all actually happened. I couldn’t believe that the hospital staff still wanted to treat me, or that my family still wanted anything to do with me. A sense of total gratitude came over me – I felt so happy, like I’d been given a second chance at life, though I could barely comprehend what had happened. I still can’t, really.

Apparently, Delirium is fairly common. I read somewhere that it happens to about 1 in 10 people who undergo major surgery. It is more common in older patients, the same as pancreatic cancer, so of course I had to experience it. I’m always looking to break down these age barriers – perhaps that makes me a hero, who knows. All I know is that being in that state was the scariest thing that has ever happened to me, and for a short period of time, I truly felt that I was experiencing what it was like to be insane, having people look at you like an unpredictable animal, unbound by any social convention or sense of self-preservation. Everything was off the table and I was certain that I had set myself on a course to total destruction – resulting in me rotting in an asylum, prison, or some other institution, with no medical team willing to help me, and with certain death on the horizon.

I want to re-emphasise the gratitude that I have for everyone who cared for me at Manchester Royal Infirmary, especially those who were dragged into this episode. I can’t imagine what it is like for them to sit through the accusations, the impulsive actions and traumatic consequences of them, but I was relieved to hear that they had commented on how surprisingly respectful I’d remained through the whole episode, never swearing or threating them with physical violence. It is a pretty low bar when it comes to Delirium, apparently. I’m also lucky to have the most incredible family around me – my mum, Anna and Greg were all incredibly supportive. Greg was back at the hospital with me the next day, and we were laughing about what happened, with the surgeon even visiting me at the same time and joining in the banter. “Still think I’m trying to kill you?” He jested as he popped his head around the door.

It is all still very strange and it feels like the little parts that I remember didn’t happen to me – almost like they are scenes from a film that I have watched or something. It is yet another chapter in the cancer journey that caught me totally by surprise, but perhaps by writing this, it might help someone else not feel so blindsded by a similar event. The words that have stuck with me from the surgeon the following day, when we were passed joking about the incident, was this – “For you, this situation is not normal. For me, it is very normal. I do these procedures every week and I hope to be doing them more. If it is what it takes to improve the survival rates, then I want it to become more common.” As if I need to prove that surgeons are well-intentioned people – their entire careers are centred around saving people’s lives – but I thought he put it so simply and beautifully. Every medical practice had a dawn where it was not widely used. If I am an early case in a type of surgery that may help improve survival rates of this cancer in the future, then I am incredibly proud to do so. Even if I am a case that proves it is not as straightforward as they had hoped, I still contributed to something. Either way, I feel proud of where I have gotten to thus far, and I am starting to feel a lot of genuine hope for the future, despite all of the bumps in the road to recovery.