Patient

January Scan-uary

godley93, , , , , , , , , , , , , 8 Comments

In solidarity with my body, I signed up at my local dentist’s practice and got my teeth checked out for the first time in a year and a half. I was inspired by my wife, Anna, and our flatmate, Matt, who both took similar action, signing up for a dentist and attending appointments within a week of each other. I started to feel left out and self-conscious of my teeth. My sense of FOMO outgrew my urge to continue my dental lethargy, and I found myself sitting in the dental office on a Monday morning. The whole process was quick, I have to say. I called on Saturday and was there two days later. Not bad.

“How’s your general health, Daniel? All good?” The dentist didn’t realise what she was sleepwalking into with questions like this. Neither did I, for a second.

“Yeah, not bad, thanks,” I responded before realising that the question wasn’t just a formality and was actually part of the induction. I quickly backtracked. “Sorry, no. My health is ok now, but I had stage 3 pancreatic cancer in 2021. I’ve been clear for over a year, but I didn’t have any checkups at the time as I was advised against it whilst on chemotherapy.” I had my excuses armed and ready to go. Cancer is difficult to shoot down, so I felt safe.

The dentist looked a little dumbfounded for a second, but we pressed on. I explained about the chemotherapy, the operation, the diabetes, blah blah blah. I’m bored of writing it all out, so I’m sure you’re getting bored of reading it.

The dentist and I established some common ground along the following margins – Kings College London is an amazing hospital, modern medical technology is wonderful, how me being alive is proof that there’s a God (this was her take, but I placidly agreed with the sentiment) – before cracking on with the examination. My teeth are apparently in good condition. No fillings are required or anything. She did ask me if I drink a lot of coffee, which made me feel a little paranoid that it was this obvious just from looking at my teeth for a minute. The staining gave me away, but she said that the hygienist would be able to sort that out. I assumed this meant that my hygenist appointment would be with someone else. Lo and behold, my hygenist appointment was with her, too. Quite the trick to play on me, telling me that the hygenist would sort it out, only to reveal at my next appointment a week later that she is the judge, jury and executioner at this dental practice. Touche.

My cancer story has become my rabbit out-of-the-hat trick. It’s my only rabbit-out-of-the-hat trick, really. I’m a one-trick pony in that regard. But every dog has its day, and my day seems to be lasting a while. Thursday, January 25th, was my next opportunity to put this theory to the test. Another January scan-uary. Getting scanny in Janny. Well, here we go.

The Scan of Dan

A cruel part of being diabetic and needing regular CT scans is having to wear a Continuous Glucose Monitor (CGM) on your body. The device is a small plastic circle with a needle inside, which snaps in place via a plastic applicator. My device is made by a company called Dexcom.

Dexcom likes to remind you that the devices aren’t compatible with CT scans, so you should take them out before having any such scan of your body. I usually avoid this problem by wearing it on the back of my upper arm, so the device doesn’t enter the CT scanner (I have to put my arms above my head during the scans, so the X-rays can really hit that abdomen area in search of any pesky tumours). This stops it coming into contact with the scan and means I don’t have to take one of the devices out every time I have an appointment. It costs me £170 a month for the privilege of having these devices. They’re expensive business.

In a moment of madness before my last scan, I decided to try applying the device to my stomach fat to see if the readings were any more accurate. I’d gone through a period of having a lot of problems with the device when inserted in my arm – the connection was cutting out a lot, and my readings would frequently not line up with readings I’d take using the old-school finger prick method. I hoped that something about my arm fat was defunct and that I could solve the issue by applying the device to my stomach fat. This lapse in judgment only revealed itself to me the following day as I made my way to the hospital for the scan and remembered that the previous day, I had decided to install the device in the worst possible place for a CT scan of the abdomen.

I had waited until I was in the imaging department changing room to do anything about this realisation. Sitting on the wooden bench, I wondered whether I could get away with leaving it in. I read an article years prior to this about a woman who had a metal plate in her shoulder but did not warn the medical team when having a scan, and the magnets inside of the scanner ripped the metal plate straight out of her body. At that moment, this story was vivid in my mind. Risking leaving the Dexcom device inserted seemed illogical. This train of thought made me wonder why I was even considering leaving it in. What a stupid idea.

As I tore it out that day, depriving myself of those regular meter readings that provide me with so much confidence in my day-to-day life, I felt dumb. Really, really dumb. Why hadn’t it occurred to me that inserting it into my stomach on scan week was a stupid idea? Because I am dumb. That’s why. At least I’ve learnt that about myself. I do seem to learn from my mistakes, though, as I had inserted the device into my arm this time. Well done, Dan. I had managed to do the absolute minimum preparation I should expect of myself before a scan.

Yet, despite managing to prepare by not inserting my glucose monitor into my stomach, I did not manage to locate the pre-scan questionnaire sent alongside the letter notifying me of the scan date. This was pretty damn dumb. Considering I have had north of 8 scans at The Christie at this point, it should be pretty easy to remember this form. Well, if this is what you’re thinking, I’m about to make you look silly. I actually DID remember that I needed to fill in the form; I just had no idea where I put the form upon receiving the appointment letter, so I never had any chance of filling it in.

Anna, my mum, and I had planned to get to the hospital early to give me time to ask for another questionnaire. After a long lunch and a lengthy spell of sitting in various traffic jams due to us making our way to the hospital at the exact time everyone picks up their kids from school, we pulled up outside of the hospital at 16:00 on the dot. My appointment time happened to also be 16:00. That plan of being early tripped on the first hurdle, I guess… I got to the sign in desk a couple of minutes late, but nothing too bad.

Still, NHS appointments know a thing or two about being late, and this one was no different. It was 17:40 before I was actually in the room with the huge CT scanner. To be fair, it always takes at least 50 minutes from the appointment start time, as it takes this long to drink the dye required to do a contrast scan. The nurses give you a large bottle of liquid and a plastic cup once you have gone through the questions in the questionnaire. They tell you to drink two cups straight away, then another cup every 15 minutes until all of the liquid is gone. After about 45 minutes, most of the drink has gone, and they call you into the next area to have a cannula put in your arm before inviting you into the scanning area. This time, I had finished all of the liquid so long before being called into the next area that I started wondering whether it was OK for me to drink some water, as I was feeling thirsty.

The scan was nothing extraordinary. I don’t know when I’ll get the results as I haven’t received a note of my follow-up appointment. When I was still in the midst of fighting the cancer, the appointment was always within a week of the scan. Nowadays, I’m more on the periphery of cancer, so the turnaround times on the results have also gotten more lax. I’d rather my result appointment continue to be far away from my scan date if that is what happens to people who don’t have reoccurrences. It seems like a small price to pay. But it means that I generally unwind from the scan a little easier, as I know there is no immediate meeting to be stressed about. As soon as I know that date, however, that will drastically change. Waiting a couple of weeks for an appointment where you may be told there is another army of tumours waging war inside you is a little stressful, to say the least.

The Tuesday before my appointment, I had been travelling home from work on the underground. There were people packed into the carriage like sardines, so much so that if you were sitting down, you couldn’t see beyond the standing torsos in front of you. Somewhere in the carriage was a man whistling with a distinct vibrato. It was silent other than the whistling and the occasional cough. I was trying to read at the time but couldn’t stop myself from focusing on the whistle. I tried to look around me to see who was producing the noise, but it was impossible with how busy the train was. It sounded like the kind of thing that would be in a war film, with the soldiers waiting to be sent to the frontline. I wondered how he knew about my upcoming scan and why he felt it was appropriate to mock me like this. Perhaps he was mocking all of us who were returning home from our cushy city jobs, where we aren’t even exposed to the cold, never mind to the bullets and the death. Maybe he was just whistling a song he likes. Who knows.

As we drove away from the hospital, I thought about that whistling. I couldn’t remember the tune or anything, but I remembered how I had felt listening to it. It was soothing yet strange. There wasn’t any place for it in that train carriage, but I felt that there was a place for it in the car. These things just aren’t there when you need them most. I relied on my memory to fill in the notes of the tune and wondered whether the whole experience signalled my imminent call back to the battlefield. Probably not – the appointment won’t be for weeks anyway, and I won’t even remember that the whistling happened by then. People have told me that my whistle has a nice vibrato, and I remember my grandad had an amazing vibrato in his whistle. Perhaps I just like whistling, and I derive a lot of meaning from it because of my memories with my grandad. Maybe that is all there is to it.

It’ll be fine. It has to be fine…

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.