Another Day, Another Hospital Stay

The Progress of the Wound

I’ve spent so much time in hospitals over these past 12 months that I’m starting to consider myself somewhat an expert on them. Sure, the staff at a hospital spend much more time there than I ever could, but they aren’t then forced to sleep on the thin foam mattresses and eat the inexplicably disgusting food. When I go into the hospital, I really walk the walk. I throw up in the cardboard buckets, sulk in the side rooms and indulge in the various sizes of cannulas. Once, I had 3 separate cannulas in my two arms, yet the nurse still approached me and asked if she could put in another one. “What is wrong with the ones I already have in?” I asked. “They aren’t big enough for a blood transfusion,” she responded. I wondered how my veins were still managing to carry blood around my body at all. They were starting to resemble a Kerplunk tower.

My knowledge of hospitals is exactly what makes them so unappealing to me. The overbearing smell of the chemicals used to clean every surface. The solitude of the shared wards, where I am forever damned to being at least half the age of everyone else in the room. The excitement when a nurse or doctor shows up to talk to you about something, only for the conversation to last a mere 3 minutes; a momentary break in your daily routine of watching videos on Youtube, trying to sleep and staring at your own legs. A&E is even worse, though – a holding pen of drunk, miserable and desperate people, most willing to exaggerate, lie and even scream to get a 5-minute improvement in their overall wait time. Pair that with the average wait time being approximately 2 weeks and you get a pretty unappealing offering.

A&E is so unappealing in the UK right now that I spent 4 hours last Saturday night projectile vomiting and trying to withstand some of the worst abdominal pain I’ve ever felt just to avoid it. My theory was that it would all pass if I just waited another hour…

Another hour…

Just one more hour…

Eugh.

That theory never materialised and as I lay there on the sofa, keeled over in pain, I finally succumbed to the inevitable. At first, we tried to ring an ambulance to take me. The last time I required an ambulance was to be transferred from Leighton hospital to Manchester. During that journey, the ambulance crew encouraged me to ring an ambulance in future if I am in a lot of pain as they described my case as “more worthy than 99% of cases that we spend our lives attending to.” Encouraged by this advice, and in desperate need of some top-grade morphine, I called the ambulance service.

Unsurprisingly, they told me that I could wait, but it would be at least 4 hours. Who would have guessed that the ambulance service would be busy on a Saturday night? Perhaps I should have lied and told them that my chest and back were indeed hot, and that my stools were so black and tar-like that they turned the water in the toilet basin the colour of squid ink, but that isn’t the kind of person I am. I answered their list of questions as honestly and positively as possible, which got me exactly where it was always going to get me. Deprioritised. Rating your abdominal pain an 8 out of 10 and repeatedly projectile vomiting 2 months after major surgery is only worrying if your chest is also warm… You really do need to be on death’s door before they’ll take you seriously. My last ambulance crew told me that they spend their lives attending to low-priority calls about issues that barely require hospital attention, but maybe they were just liars.

My mum, Anna and I jumped into the car. Royal Stoke hospital is a 20-minute drive, so it isn’t too bad. It was the pain relief that I was so keen to get, and I knew that I wasn’t going to get it for hours if we walked into A&E. When you get an ambulance, you get it before you even make it to the hospital! It is a life of luxury in an ambulance – you’re given your own driver AND a separate paramedic who can prescribe you morphine; no wonder they’re so popular on Saturday nights. I crawled into the back of the car. My mum handed me a bucket, which was a good idea in hindsight, as 15 minutes into the journey I started throwing up again. The car stank for the last 5 minutes, but the bucket was then left in the back of the car, to my mother’s dismay as she returned to the car a few hours later. She then had to drive back to the house with the smell of stale sick lingering in the air.

Anna and I went straight into A&E whilst my mum negotiated the car park. One thing I will say about having a major operation and a history of pancreatic cancer is that you do get triaged very quickly. As the receptionist was handed my discharge notes from Manchester, which includes my original diagnosis of stage 3 pancreatic cancer, all of the gritty details of the operation, as well as the fact that I am now fully ‘insulin dependent’ (AKA Diabetic), she looked a little overwhelmed. We sat in the waiting room for no more than 10 minutes before I was called up. I was glad to be out of the waiting room – it was full of drunk, miserable people. I was also miserable, but the others were really miserable; there was wailing, shouting and some chaotic laughing coming from a man lying on a set of chairs who was occasionally shouting something at a man sitting across from him – I’m pretty sure he was being racist to the poor guy, but he could barely form a coherent word, so it was hard to really know.

The nurse took us into a bay and closed the curtain. As she asked me to explain what was happening, and I started making my way through the history of Dan’s cancer, I started to cry. At some point during my recital, a thought hit me like a freight train. I remembered watching an advert about cancer a few years ago where a woman described suddenly falling violently ill, projectile vomiting and not knowing why. A week later, she was diagnosed with cancer. I sat in the chair, bent forward and holding my abdomen. “It’s fucking spread, hasn’t it?” I said to Anna. Shortly after the nurse took us to a room and told me that I can’t be around the general population in case anyone passes something on to me. There we waited about 30 minutes for a bed and then we settled in. It was about 23:30.

It took around an hour or two for the nurse to put in a cannula, take bloods and give me a course of pain relief. Things slowed down after that. The nurse told us we were “going to be seen next” for a grand total of 5 hours. By the time a doctor finally came to speak to me, it was around 6:30 in the morning. After the pain relief had dampened my abdominal pain, I’d spent most of the time drifting in and out of sleep. Poor Anna and my mum were taking turns alternating between the two chairs in the room – one was actually a stall, so to sleep on it, they were having to lean their head forward and rest it on the bed. It didn’t look comfortable at all.

Luckily, when the doctor did eventually see me, she was extremely knowledgeable and diligent. She quickly went through my blood test results, telling me that my infection markers weren’t worryingly high but were raised. The plan was to do a CT scan at some point that morning. Unfortunately, the shift changeover was at 7:00am so after that brief interaction, we didn’t see her again. After a few more hours I was moved into another part of the hospital where I stayed for another few hours, before being admitted onto a ward. I really didn’t want to be admitted. In my experience, trying to get out of the hospital once you’ve been admitted is like trying to escape Alcatraz. The amount of procedures you have to fight through just to leave on the day you are discharged is crazy. You sit around waiting for the doctor to write the discharge notice, then you wait for the ward to process it, then you need a porter to ferry you to the discharge lounge where you have to wait for the Pharmacy to put together your medication, which has never taken less than 3 hours for me, then, finally, you’re allowed to leave. By this point, it is usually 20:00 in the evening and you’ve spent all day in purgatory, resisting eating any more hospital food because you know that soon you’ll be able to have real food from home, food that actually tastes of something.

So I went to a ward, then got moved to another ward and then went to do the CT scan. A few more scans were planned for Monday morning – the hospital needed to order some of the materials required to do the scan. The CT scan used a contrast dye which is pushed directly into your blood via the cannula which is connected to a line. The type which they couldn’t do was one where you drink a liquid before the scan, taking a cup of it every 15 minutes for an hour, and then you go into the scan. I believe the liquid you drink can be tracked as it makes its way through your body, allowing them to trace how things are moving through. Some of the details might be wrong there, but hopefully, you get the gist. The hospital didn’t have the liquid you need to drink prior to having the scan, so this is what we were waiting for.

The results of the CT scan showed that I had a blockage in my colon. One of the new joins in my digestive system had swelled up, I think, and it was causing my stomach to not empty properly. When my body realised it couldn’t digest food, it went into emergency mode and decided to fire it back out from where it came from. That seemed to explain why I’d had such a bad pain in my abdomen.

A downside to the next scan being Monday was that I wasn’t allowed to eat anything until after the scan. This wasn’t a problem Saturday night, with the taste of sick lingering in my nose and with me barely stomaching water alone. It was starting to become a problem by Sunday afternoon when I was actually feeling a lot better. My stomach was hurting but I was starting to get quite an appetite again. There was nothing to be done, though, so I settled into another night in a hospital.

A downside of being diabetic is that not eating can send your levels all over the place, especially if you’re ill. My body was not only fighting whatever was happening now, but it is also trying to recover from the surgery. The surgeon had warned me that this will likely be the case for 6 months and that my blood sugar levels will be difficult to control throughout this period. Between the illness, recovery from the operation and not eating, my blood sugars kept dropping to dangerously low levels.

For those of you who don’t know much about diabetes – the idea is to try and control your blood sugar levels in a similar way to how your body does when it is functioning properly. You inject insulin to stop your blood sugar from spiking when you eat and to bring it down, and if your blood sugar gets too low, you urgently take on sugar to bring it back into a safe tolerance. By ‘take on sugar’, I mean that you drink something sugary like fruit juice or Coke. You can also eat sweets that are all sugar, but anything that also has other nutritional content, like chocolate bars, which also contain fat, will take longer to digest. That means a slower increase in your blood sugar, which could be dangerous. Your blood sugars can be high without it being dangerous on a short-term basis, so it isn’t too concerning if they are slightly elevated. Low blood sugars can be very dangerous, though, and can result in an individual passing out, with the risk of falling into a coma.

Another downside of being diabetic and being an inpatient in a hospital is that nurses, in general, do not seem to know how to manage it at all. That night, the nurse came to take a reading from me. It stated that my blood sugar was at 2.7, which is low. The ideal range is between 4 and 7, but I consider anything up to 10 as Ok. The reason it had got so low is that my Continuous Glucose Monitor (CGM), the device which is attached to my arm and continuously sends readings to my phone, tends to record around 2 points higher than my blood sugar level when tested. It isn’t always that different, but when the blood sugar levels are changing frequently, as they were that night, it tends to be more inaccurate. That meant that I thought my blood sugar levels were around 4.7, which is fine, but in reality, they were lower than this. As I had recorded low blood sugar levels, the nurse had to put me on a sliding scale.

Now, I repeatedly told her that I’d rather manage it myself and that my body will be very susceptible to insulin when my levels are being so volatile, but that couldn’t supersede the ‘process’. If your blood sugars are recorded as low, the staff have to ‘take control’ the nurse told me. The problem is that most of the nursing staff don’t seem to understand how to control a diabetics levels. I heard the nurse repeatedly asking another nurse how a sliding scale works, what she should be doing with it etc. I wasn’t particularly happy that this person was in charge of it.

A sliding scale is a machine which is hooked up to the cannula and monitors your blood sugar levels. The nurse can tell it to give you a certain amount of insulin per hour, which is what this nurse did. The problem is that my level was randomly dropping without much warning, so why would I want to introduce more insulin into my body at this time? I said this to her, but she told me that they had it under control. Of course, that night, I had 3 hypos where I urgently had to eat glucose gel to get my levels raised again. Eventually, the nurse listened to my pleas to stop leaking insulin into my body and changed the amount of insulin being issued to 0. This was happening throughout the night as I was trying to sleep. I genuinely lay there terrified that these nurses were going to kill me if they didn’t listen to me and stop what they were doing. It is incredibly frustrating.

Going into the hospital as a diabetic is genuinely scary – you really see the lack of fundamental knowledge in the area. You are constantly given things like orange juice with your meals, there is no indication of how many carbohydrates are in a meal, which would help you inject the right amount of insulin for what you eat, and the nurses frequently seem bewildered by what to do with you as they routinely check your levels. I don’t blame the individuals, but something really isn’t working in this area of care. You’re far better off at home where you can eat healthier and be responsible for controlling your own blood sugar levels.

The next morning, the surgical team came and spoke to me. “You seem well,” the head surgeon said as he approached me. “Yeah, I feel fine now. I’m just starving,” I retorted. “Well let’s cancel the scans, let you eat and get you discharged then,” he said, to my surprise. He explained that these types of blockages usually clear themselves up and then the subject is fine. I was sceptical but I accepted what he said – he knows better than I do, and I was feeling much better now. That was that. A few hours later I was let out (I did not have to pick up any medication to be discharged with so I missed the pharmacy debacle, which was a relief).

My problem since leaving the hospital has been that some of the issues haven’t gone away. It isn’t comforting to be released from the hospital with nothing – no antibiotics, no advice on what to do next time, or what not to do to help prevent it from happening again, nothing. For the first few days at home, I did feel better, mostly. Since Wednesday, I’ve started getting this heavy feeling in my stomach and lower abdomen again. When I try to eat as much as I feel I want to in order to satisfy my hunger, I start feeling incredibly sick. The whole thing has left me feeling lost, and I’ve just reduced the amount I’m eating by a lot. I feel hungry all of the time, yet still a little bit sick. It is exhausting. As a result, my blood sugar levels are also all over the place. I seem to have at least 1 hypo every night, where my blood sugar drops too low and I have to have a glucose gel. Luckily, when my phone records a low reading, an alarm goes off. If I didn’t have this, I probably just wouldn’t be sleeping out of fear that I wouldn’t wake up.

All of this is worsened by the fact that my wedding is on Friday, so I am extremely nervous that I may have another episode around then, which would ruin the entire day. There are so many growing pains with everything going on – the diabetes, recovering from the surgery and, now, mentally preparing myself for the next bout of chemotherapy. Sometimes you wish life would just give you a break. I really need it right now.

Home Again With Little Lucy

Delirium

‘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.

Cancer Free (Sturm und Drang)

The Road to Recovery

The Day After the Operation – Tubes Everywhere

I want to start this post with an apology in case I repeat anything I have written in my previous two posts. Surprisingly, two weeks of opioids and painkillers aren’t conducive to a well-formed memory. “Why don’t you go back and read the posts then, Dan?” you may ask. I don’t waste my time reading such drivel; I leave that to my poor readers. On a more serious note, there’s something about not remembering what I said which makes me nervous about going back. They were also written when I was in a dark place – getting very little sleep on the ward and struggling to adjust to a new life, one of diabetes and fighting back from major surgery… a fight which is still hamstringing me now. I have been pleasantly surprised by the number of views the blog has been getting in my absence, though. A few days ago I looked at the figures, and it had received 160 views that day. Not too bad considering I’ve fallen off the face of the earth over the past month!

It is funny that before the surgery I claimed I’d be offline for a fortnight or so. Technically, I wasn’t wrong. There have been posts since the surgery. I really did believe I would be back to full activity after two weeks… a laughable claim, really. Turns out that it isn’t quite so easy recovering from a 13-hour surgery. In my defence, I was starkly warned that a full removal was very unlikely. The fact that you could have your entire pancreas removed was actually news to me, news that I would only properly understand about a week after the operation. I’d been told many times during that first week what had happened, and probably even regurgitated the words to some unsuspecting nurses who were just trying to clean my wounds, or even to another patient in a bed next to mine, perhaps. “How are you feeling today, Daniel?” They’d ask. “Well, I’ve had my entire pancreas removed and don’t know if I still have cancer or not.” That’s one way to kill a conversation. I don’t remember such a conversation, but I know myself well enough to know that I would have told anyone who came within 6 feet of me what had happened.

The First Time I Managed to Walk Outside – About 5 Days After Surgery

The meaning of the words only landed about a week later for me, though. I’d been sitting there at night struggling to sleep when suddenly I started saying to myself, “wait, my entire pancreas was removed? Is that even possible?” The fact that I was now fully diabetic hadn’t occurred to me yet as I was attached to a machine which measured my blood sugar every hour and administered insulin to balance it out. Essentially, the machine was acting as the pancreas I had lost. The machine wasn’t leaving the hospital with me, though. That reality wouldn’t dawn on me for yet another week, when I finally got taken off the machines and had to deal with it head-on. Unfortunately, my first stint as a free man after being discharged from the hospital was short-lived.

I first got out of the hospital about 10 days post-surgery. Though I was incredibly happy to be out of the hospital and back in the comfort of my own home, the relief didn’t last long. That night, as I went to lie down in my bed for the first time, I felt a wave of sickness come over me. After several more attempts to lay flat, I realised that it was the act of laying down that was the catalyst. As soon as I lay back, it felt like my stomach was sitting in my mouth. I’d barely slept in the hospital and felt like I was suffering from a form of PTSD, which I probably was, I think. During those 10 days in the hospital, I felt like I had developed an extremely unhealthy association with sleep – one of me twisting and turning in a hospital bed with tubes coming out of every part of me. Some nights I’d sat there crying whilst 3 nurses tried to console me. “How much more can I give? I don’t even understand if I’ve got rid of the cancer and even if I have, it’ll just come back anyway.” I was inconsolable on several occasions. The nurses sometimes seemed confused, as if what had happened to me was a miracle. Maybe it is. I’m still trying to decide. I don’t think they quite understood what road I have ahead of me still, though, even if it is incredible what was achieved during the surgery.

That isn’t to say that I’m not incredibly grateful to the surgeon for what he did. I’ve since had the histology results from the operation. This is where the lab analyses all of the things taken out during the operation and determines how successful it was. They do this by analysing whether good margins were achieved – i.e. whether they have taken all of the infected areas out of the body, with the inclusion of a margin, assuring that any lingering cancer cells should also have been removed. After analysing the samples from my operation, they determined that good margins were achieved and that the whole tumour has been removed. That is amazing news, of course. It was confirmed that I did indeed have pancreatic cancer, and they now believe that the cancer formed because of a cyst which had grown on the pancreas, allowing the tumour to then take hold. Two-thirds of my large bowel was also removed, as well as the bile duct, spleen and some of the stomach. Forty-five lymph nodes were removed, with two of them testing positive for infection in the lab. On top of all of this, I also had two major arteries reconstructed. The reconstruction of these arteries is why the large bowel had to be removed – something to do with the blood flow meant that the bowel had to be taken out. The lab confirmed that there was no cancer found during the testing of the bowel, which is encouraging.

All of this is very good news. The problem is that pancreatic cancer is extremely aggressive. Although I may be cancer free for now, in terms of having no tumours visible on a scan, it does not mean that new tumours won’t form or haven’t started forming in other organs. I’m entering a period of 5 years where I have to ‘Live With Cancer’, as the surgeon put it. That’s Ok, but it still takes some adjusting to. It feels like being in a strange limbo where I know I am extremely lucky to be here but also struggle to feel contented in it at all times.

Taken During My 12 Hours at Home, Before Returning to Hospital

Anyway, back to the hospital story. The next morning, after throwing up all night and getting hardly any sleep, I made my way to the nearest A&E on the advice of the non-emergency contact line 111. There I was put on a drip and left in a room with my mum for hours. Eventually, the surgical team came to see me and asked what operation I’d had. When I told them, they barely believed me. It turns out that getting extensive surgery isn’t that common, especially when you’re in your 20’s. She immediately set out on a path of getting me transferred back to Manchester hospital where I’d had the procedure, so she did not have to deal with this absolute mess of a patient. I was happy – I absolutely hate this hospital. I’m sure I’ve spoken about it by name on the blog before, but I’m going to keep it under wraps today so no one can accuse me of being a ‘hater’. I will give you some clues – it is located in Crewe and its name rhymes with ‘Clayton’… I’m sure you’ll never work it out.

My second stint in the hospital lasted 7 days and was pretty painful. This time around I experienced several uncomfortable situations. I had a pipe pushed up my nose and into my stomach to help remove excess liquid from the digestive tract. I had a catheter put in when I was fully awake – the first time I had one put in was during the operation when I was out cold, which was much more convenient. Then, I sat and watched as the wound on my abdomen started to leak so much blood that I needed two blood transfusions. And finally, I got put on a ward where my bed was directly in front of the toilet, and I got to sit watching as everyone on the ward made their way in and out of the toilet – what a joy to see (and smell).

Extracting Stomach Fluid – Not My Best Angle

I won’t bore you with all of the minute details of my hellish experiences in hospital over those 2 stints, but there are a few things which feel worth discussing. Firstly, the severe bleeding from the wound. The surgeons were incredibly worried about it as they thought it might have been one of the reconstructed arteries leaking. I was rushed to the CT area for an emergency scan. After having the scan, 3 senior surgeons rushed into the room and asked the clerks to give us a few minutes alone. The head surgeon approached me, staring me dead in the eyes. He put his hand on my arm and started speaking to me in a very serious tone. “Look at me – how do you feel? Not mentally but physically? Only you can know if you are feeling unusual and we may have to make some critical decisions over the next few hours.” If I wasn’t worried at the sight of blood pouring out of the wound, I was worried now. They told me that I may need emergency surgery that night, depending on what the results of the scan said. Luckily, that didn’t happen. It turns out that the skin was bleeding and that blood was building up under the wound. Two cavities had then opened up on either side of my stomach, and the buildup of blood was leaking out of them. It wasn’t pretty. They’re still healing to this day. Nurses come to my house every day to take pictures, pack the wounds with fresh material and then change the bandages. The wounds need to be packed to prevent them from healing too quickly. When this happens, the top layer of skin heals quicker than the inside of the cavity, allowing a pocket under the skin to form where infections can build up. It is all pretty gross. I have to say, watching someone use a little plastic stick to push a piece of material into your abdomen is pretty uncomfortable. One of the cavities is 3cm deep… gross.

Now, the blood transfusions. There are a few things about blood transfusions that are creepy. The most obvious one is the fact that someone else’s blood is being pushed into your veins, and you are sitting there watching it happen. It is an amazing thing, of course, but that doesn’t make it any less creepy a concept. I sat wondering who’s blood I was being blessed with. Maybe I’d start liking different things or having someone else’s memories come the morning. Maybe they were much smarter than me and had big business ideas harboured in their mind which they were now passing on to me. Or maybe they have some sort of disease that wasn’t picked up in whatever screening they do before they let someone give blood. That probably won’t happen, although I did read a few articles about people seeking compensation for that exact thing happening when I was in hospital… Just put it to the back of your mind, it probably won’t happen to you. It didn’t – as far as I know. I haven’t had any big, out-of-character business ideas either.

The other thing that is disconcerting about a blood transfusion is that the bags of blood are kept very cold to stop the blood going off. Not only were they very cold, but they were being infused into my veins over a period of 3.5 hours, and I needed 2 bags. That meant I had to sit there for 7 hours whilst this blood transfusion was going on. Due to the temperature, you can feel the blood going into you, and it gives you these strange chills. My body was occasionally shivering because it was making me so cold, and they didn’t start them until 23:30 at night, so it was happening through the entire night. I hardly slept during my hospital stay anyway, so it didn’t affect my sleep, but it made for a very uncomfortable night. I put my headphones in and tried to relax, but the nurses were coming to prick my finger every hour to check my blood sugars, so relaxing wasn’t that high on the agenda. I also still had the catheter in and every time I moved, I felt the tube pull. As a result, I lay there trying to be as still as possible, shivering and wondering how close to the next finger prick I was. If your life really does flash before your eyes when you die, this is my request to my life to leave these memories out – I’d rather not relive them, thank you.

There is so much more to talk about – the recovery since leaving the hospital, how I’m feeling now, the next steps, dealing with diabetes. I can’t fit it all into one post and considering it has taken me 3 days to even write this, I don’t really have the energy. I’m hoping to get back to posting regularly, but it may only be once a week for a while. Recovering from major surgery really is tough – I feel proud of myself when I manage to eat a full meal without heaving or manage to get through an entire afternoon without accidentally falling asleep for 3 hours on the sofa. My energy is at an all time low and I just feel completely zapped. Things have gotten better over the past few weeks since leaving the hospital, but every time I take a step forward in one department, it feels like another one pulls me back.

Last night, as I was preparing to get in bed, I started feeling extremely itchy all over my body. After inspecting my skin a little closer, I realised that I had a rash forming all over my body. It has been causing me problems ever since. It is the most recent example of life seeming to enjoy kicking me while I’m down. It means that I should have plenty to write about over the next few weeks, though, so that’s something. I’m sorry for going missing for so long and thank you to everyone who has reached out on the blog and beyond. I’m absolutely terrible at answering at the minute, so please don’t be offended if I haven’t gotten back to you. I will make my way through the comments on the blog soon, I promise.

Thanks for sticking with me and I promise there will be a steady stream of content coming over the next few weeks. I’ve got loads of complaining to do!

An Update Post Surgery

The Road to Recovery

Where do I start? Do I talk about the operation and how a team of people tirelessly slaved away, working on my body for 13 hours, making sure that none of the tumour could remain? I wasn’t there for the surgery, so I can’t talk much of that experience, only the fallout afterwards. Do I talk about the stories I gathered as I was taken from room to room, doctor to doctor, fighting infections and numbing the different types of pain that were coming and going? Or do I talk about none of it at all, choosing to look forwards in my life for the first time since last November? “You will go and live your life now,” my surgeon said to me. Were the painkillers numbing my positive emotions too? I can’t even be happy about it; it just doesn’t feel real. My cancer hasn’t necessarily gone – I have to wait for the histology results to find out what comes next. I’m likely going to be back to chemotherapy soon.

It was hard to even think on it all too much for a few days, and I just burst into tears in the middle of the ward when I did. How has this actually happened? There was no version of events in my head where I actually survived this thing. I thought that my role in the world was to be that insignificant statistic who insignificantly died at the hands of a statistically significant cancer. You don’t boil yourself down to a statistic. Neither will your friends and family. Extend out a few more branches in the tree and you are in territory where you are a statistic, another name on a page. It’s how humans process information. It’s how we understand how good or bad something is. It’s how we make arguments about pancreatic cancer being one of the deadliest to have and how you have to be old to even be eligible for consideration. Yet, my surgeon sat and said to me in the most serious of ways, “We aren’t going to perform miracles, Dan. We can only do what we can with what is presented in front of us.” It seems that he has performed a miracle here, or has started the progression towards one.

So I haven’t been told I’m cured yet. Removing the entire pancreas is a good start, and I’ve only ever been told that I have cancer on my pancreas, so maybe it’s a really stupid thing to even suggest that I’m not. I’ve learnt not to assume anything with cancer, so I’m not going to assume anything. I’m almost certain there will be mop-up Chemotherapy, scans, and other bookmarks in the calendar that same carry a familiar type of anxiety. It sounds like the only objective is to get better for a good while though. Another surgeon who was looking after me for a while on the Sunday told me that the tumour would be cut apart the before performing some tests on it. That would help to indicate what the best next steps are in terms of treatment, as well as helping future research.

The headline really is that I don’t have a pancreas anymore. No more ripping on Dan Pan, Penny Pan Pan or Pan Can. This means that I am fully diabetic now and have been learning to interject insulin over the past few days. Alongside my pancreas being taken out, 3/5ths of my large bowel was also removed. Some major arteries were then reconstructed before I was finally put back together again.

I had a strange sensation on the Tuesday morning after the surgery. I’d been struggling to sleep and was overindulging in the pain relief button. It was about 4:30am. As I lay there; watching the nurses walk between their stations and the various beds, checking temperatures, replacing dressing and sitting on their computers reviewing data, I felt like I was in a game. They walked around with lights in their hands and shone them at exact spots for different reasons; because an alarm went off here, because they knew that they checked this this thing every 10 minutes. I started trying to learn their patterns and understand their movement, I was trying to figure out if I could fit in with them. Somewhere in the process, I alienated myself from them, and I sat there listening to the ‘moody’ playlist on Spotify and feeling lonely instead. My bed was in the corner and had a load of equipment next to it.

A few minutes later, the nurse surprise me and came over to get some equipment from the shelves next to me. I hadn’t predicted it. Damn it. “You do a lot for people you know,” I said to her as she filled up a box of various things from the drawers next to me. “We’re just here to take care of people, dear,” she replied with a smile. “It’s 4 o’clock. You need to sleep,” we were back to the games. I told her that I’d lost my headphones a few minutes prior after taking them out to talk to her. We found them together a few minutes later. It was a long night, why not waste a few minutes of her valuable time on my pointless games.

Stories are abundant in hospital, that’s for sure. My dad used to obsessively watch 24 Hours in A&E on tv here in England. It’s a show following the Accident and Emergency department of a hospital for 24 hours. It has everything that a compelling story might have – twists, tribulations, trauma. They don’t need to seek the stories out, only place the cameras in the buildings and wait. They knew that the stories would come from there. We haven’t been watching it so much these last few months. It isn’t so fun when your family is currently suffering from an ailment which affects you, very much centred around hospitals. My dad probably still does, but not when I’m around.

I don’t have enough energy to really speak at length about everything right now. Eventually, I’ll talk more about hospital and all of the challenges that came with it. For now, I wanted to think you all for the messages of support, and let you know that I’m doing well. I’m getting stronger every day and can walk outside the hospital when my family visit. I’m going stir-crazy on the ward and am hopeful that they will discharge me tomorrow so I can continue my recovery at home with my amazing family, fiancée and Lucy dog. The hospital want my insulin levels to balance before taking this final step, and we seem to have achieved this over the weekend.

I’m trying to do my best to remain grateful, but there is a lot of change on the horizon. It’s all very intimidating. I know that being diabetic will just be another thing that I’ll grow accustom too, but combined with the future threat of cancer, recovery from surgery and lack of any pancreatic enzymes in my body at all, it feels daunting. The next few weeks will be an interesting journey through these facets of the illness.

This is also the 100th post on the blog! What a momentous post to coincidentally fall into this milestone! Here’s to plenty more Ebb and Flowing (preferably without all the cancer, but we’ll see).

Last Thoughts Before Surgery

The Road to Recovery

‘You wanna move mountains, go ahead
I think I’ll suffocate instead
A change of scenery won’t tame
The endless earthquakes in my head

So I’ll suffer through
A means to an end, it’s all I can do’

This will be my final post before I go into surgery on Friday. I would imagine that it will be at least a week before I post again, if not longer. I’ve been told that I will be on a high-dependency ward for the first few days. Once I am cleared from that ward, I will be moved to a more routine one for around a week. Of course, it all depends on what is done during the procedure, how well I recover and whether there are any complications along the way. If a Whipple procedure is possible, the impact will be much greater on my body than the NanoKnife.

As the dietician told me, the Whipple involves the surgical team creating 3 new joins in the digestive system. Hearing the phrase ‘new joins’ in relation to your digestive system is a little unnerving; I can’t say that it is an attractive prospect of surgery. The fact that the Whipple would probably be my best chance at getting rid of the cancer however, makes the concept of having new joins in my digestive system a very attractive thing indeed. Join me up, doc… that felt a little weird to type.

Cancer is always pulling you in a million directions. Your standard of life changes so much that you find yourself feeling grateful to be eligible for major surgery, strangely looking forward to potentially having your digestive system rearranged like a hamster run. Of course, the alternative, to not have an operation and allow the cancer to grow inside your body unabated, is most definitely not better. Imagine telling myself a year ago, “Hey Dan, in 12 months you’ll be eight months into treatment for stage 3 pancreatic cancer and looking forward to an operation,” I’d probably have replied with a laugh and a “Who would look forward to major surgery?” I also thought I was immune to things like cancer 12 months ago because nobody in my family has had it. I thought I was invincible so long as I was either training for an ultra-marathon, or actually running one. Turns out that running ultra-marathons doesn’t actually make you immune to cancer. It probably makes your body a little bit better at fighting it, though, so it was still worth something. Hopefully. I enjoyed it anyway so it was worth every second.

I say that I’m looking forward to surgery. I’m not. That probably isn’t a surprise. It would be short-sighted to not acknowledge what a privileged position I am in to be offered this opportunity, though. There are people that read this blog regularly who are not in the position I am in, some who have been definitively told they are inoperable. My surgeon told me that to the majority of oncologists/surgeons, I may have been deemed to be inoperable given the circumstances, but luckily I am with a forward-thinking and optimistic team who do see opportunity here. I am grateful for that, and thus, am looking forward to being afforded such an opportunity. Am I looking forward to going through it, though? Hell no. Am I looking forward to putting my family through it? Hell no. It isn’t good for anyone involved, but it has the potential to change everything.

With a Whipple procedure unlikely to be a possibility, it’ll probably be NanoKnife. Although that carries a smaller recovery time, it still requires the surgeon to cut into my abdomen and play around with the organs there. Clamping this, cutting that; the scene doesn’t inspire a lot of enthusiasm in my brain. Then I remember that one of the things being cut is the tumour itself, and all of a sudden I get all evil and masochistic. “Do your worst, surgeon! Make him pay!” I feel like rubbing my hands together and snarling as I grin, staring at my own stomach. I’d only be cursing my own body, though, and I will eventually pay a price for whatever is done to the tumour. Whether that price is recovering from a successful removal, or recovering from electric pulses being applied to my pancreas, is yet to be seen. Either way, I’m sure it is going to suck at least a little bit in the days, weeks and possibly months afterwards.

I don’t like the war analogy when talking about cancer, but it can be hard to ignore. It’s hard not to liken yourself to someone fighting against an enemy force, even though you feel like a bystander in that war the majority of the time. You attend appointments, anticipate scan results and cower whenever the hospital calls you, but you don’t do a lot else to contribute to the process. Your war is usually with yourself – keeping your head up, finding a way through the painful days and doing your best to sleep well at night. It’s a war of attrition, but the cancer doesn’t have a brain to disadvantage it. Your brain will do everything in its power to attack you. Mine has been telling me that my neck is swollen, that it’s got in my lymph nodes and that my abdomen hurts more than usual. Sometimes, I wonder who’s side it’s really on.

It doesn’t help ignore the war analogy when you find yourself packing your bag the night before, knowing you have a critical period ahead of you. Last night, I was packing my bag and responding to all the lovely messages I’ve been sent. The war analogy felt real. Now, as I write this, I sit in the car on the way to hospital. It’s mostly silent… anticipation hangs in the air. I get the feeling that people feel more anxious than they’re letting on; you can sense it as we sit listening to the music playing from the speakers. Everyone is a sitting duck in their own head.

Anna has the password to the blog’s Twitter account, so that’s probably the best place to find an update soon on how things have gone. Thank you to everyone for the support. I will get back to all of the blog comments once I’m feeling well enough post-surgery! Thank you for continuing to read and I hope I’ll be coming back with some positive things to say next time I’m writing.

A Story About Surgery

The Road to Recovery

Dexter the Dog

I was meant to be in surgery last Friday but it was postponed by a week. Part of me wishes that I had not uploaded a post informing the audience of that fact, then uploaded a post in the middle of the day on Friday talking about being in surgery. That should have pulled in some views! I guess you can schedule posts on here, so if my audience knew about the WordPress functionality, they may deduce that it was all a ruse. Also, everyone that knows me personally already knew that it was postponed and they probably make up 50% of the audience of this blog, if not more. It would have surely fooled some people reading, though. Maybe I could have sat Tweeting as if I was in surgery throughout the Friday. ‘The surgeon is just clamping my stomach out of the way so he can access the pancreas. Still no eyes on the tiny twat of a tumour. Painkillers doing a good job but all the blood and organs are making me a little queasy #Hemophobic #ThatsSoSurgery’, the first Tweet could have read, to the dismay and disbelief of my followers.

All of a sudden it feels like I have cheated time. I got a similar sensation when I used to travel from the UK to America for work. It always felt like I had gained a few hours back for my travelling, with the time difference allowing my watch to jump back 5 hours upon landing. Of course, you lose that gained time when you make your way back to the UK, assuming that you ever go back. In a similar fashion with the surgery, I will lose another week further down the line recovering, where I would have felt better if I had been in surgery last Friday. That is probably worded a little confusingly, but hopefully you get my point. Now that I seem to have perfected the art of time travel, I may as well use some of my meaningless time to write another blog post, after a mini-hiatus.

I was shocked to read the news about Japan’s former Prime Minister, Shinzo Abe, being shot on Friday. Even more shocking was waking up to the news the following day that he had died. I spent a good 30 minutes in bed looking through articles from every news outlet I could find asking one simple question of them – why did it happen? Why did this man decide to shoot the prime minister dead during what seemed like a routine campaign speech? Further to this, why did he go to such lengths, creating his own firearm, just to carry out such a malice act? I couldn’t find anything provocative in the topic of speech, or even in the prime minister’s history in office. If anything, it seemed that he gained a lot of respect during his time in office, both domestically and on the international stage.

The answer to the question regarding why he created his own firearm seemed more straightforward – Japan has tight gun laws, so guns are hard to come by and gun crime is extremely low. Hence, if you want to shoot someone, you will struggle to get hold of a gun, so making one may be easier. Creating your own firearm requires a lot of planning, providing the potential perpetrator more time to get some perspective on what they are preparing to do. This person really wanted to kill this man, and no amount of time was convincing him otherwise. He followed through with the heinous act until the very end.

In the most human of ways, I was yearning for a concrete reason as to why this man decided to do this, as if everything is that simple. We humans like to organise the world into stories – they provide us with structure and allow us to better understand an event. In understanding the event, we can put it to bed in our minds, by providing an ending to the story and feeling that it was concluded. Sometimes we don’t find out the ending and it bugs us, but that also makes it an effective technique in storytelling – leaving it down to the interpretation of the audience, allowing them to create their own ending based on what they have learnt of the characters, events and mood of the piece. On other occasions, we may not like the ending of a story, and we find it jarring to accept what happened. By not agreeing with the ending of a story, we may discover more about ourselves and why we don’t accept the ending. Sometimes it may be obvious, like when our favourite character is killed. Other times it is less obvious, and we debate with friends over it, arguing that this or that should have happened differently.

I’ve been reading an interesting book recently called The Loop which talks a lot about human behaviour. One of the most interesting points that I have read is about how the brain processes information to ease the load on our cognitive functions. There are so many things occurring in the world around us that if we tried to perceive all of them at once, we would never get anything done. We would be overwhelmed by information, unable to make any meaningful decisions in response to it. To solve this problem, the book states that our brain takes all of the data from our senses and processes that information into a ‘story’ which we can process quickly. This allows us to make decisions quicker than we would otherwise be able to, which was critical to our survival when we were not organised into societies like we are now. If you are about to be attacked, you don’t have time to pay attention to the ambient bird song around you, or the storms approaching in the distance, you need to make a decision about the main threat as quickly as possible to better guarantee your survival. Will you run or will you fight? You’re usually already doing one before you have consciously made the decision.

I’m not sure how accurately I am describing these things, and whether they are mere theories, as opposed to things that are properly ‘proven’. To an extent, I think some of these theories are hard to conclusively prove as 100% correct, other than presenting evidence which seems to back them up. It makes sense to me, though. The fact that we seem so predisposed to enjoy stories and find predictable patterns in the world makes me believe it even more. Those things satisfy our brain because they make us feel safe, as if we understand that to be the natural order of the world. We like to think that things are predictable and follow a plot – it helps us drive our cars every day without worrying about the prospect of crashing, and it allows us to go about our lives without constantly worrying about having a heart attack at any random moment. We struggle to comprehend when a study is done, and the results tell us that our behaviour is irrational. Instead, we choose to believe that if we were in that study, we would have behaved differently, beating the odds and being one of the few that saw past the tricks. When we put a bet on a football team to win a game, they lose. When we decide to save the £5 we were going to bet on them winning, they do win. We curse the universe. Why does this always happen to me?

There are now theories about why the gunman carried out his heinous plan to kill the Japanese prime minister. Apparently, his motive centres around a political movement called the Family Federation for World Peace and Unification, or the Unification Church for short. The gunman claims that his mum made a huge donation to the Unification Church in the 90s shortly after she joined, which put a huge financial burden on his family. He claims that Shinzo Abe has ties to the Unification Church, due to him speaking at an event (or a few events, it isn’t very clear from the reading I have done) organised by the them. Police have said that upon searching his house, they found other handmade guns. The gunman apparently attended a few other events that the ex-prime minister had spoken at, indicating that he has had a fascination with the prime minister for a while. It is certainly unwinding to be an interesting story, one that almost sounds too unusual to be a feat of real life as opposed to fiction. Perhaps I am simply overindulging in the story.

I have been creating a few of my own stories these past few days; I wish I could say they were happy ones, but they aren’t. It has been much tougher this week compared to last. Last week, I felt good until I woke up on Wednesday. From that morning, I felt tense, stressed and worried about the upcoming operation. The call then came on Thursday morning informing me that the operation was having to be moved, and it took me another few hours to fully decompress. I did, though, and I spent the weekend enjoying the nice weather, seeing friends and family, watching the Wimbledon finals and generally enjoying the impromptu time which was afforded to me by the operation being moved. Sunday night brought an end to that luxury.

Things have been hard since. A few things stick out in my mind which demonstrate where my head has been the last couple of days. At some point on Sunday, it struck me that I should have been in a high dependency unit at that very moment, with a wound across my stomach and tubes going in and out of every part of my body. It then occurred to me that all of this will still be happening to me exactly a week from that moment. That thought didn’t sit well with me. I wanted it to just be here so I could get on with it and deal with it. No matter what I did, my mind went back to that place. It is still frequently going there. Last week it hadn’t bothered me as much – even in my tenseness, I was eager to get the operation done. It wasn’t due to me fantasising about what state I’d be in this time next week. Now, these thoughts are haunting me quite frequently.

Next, my mum’s dog Dexter has been hunting in the garden this week. He is a spaniel, so has strong instincts to sniff out and dispose of other smaller animals that he regards as inferior to him. Monday night he found a hedgehog and was running around the garden with it in his mouth. My sister eventually got him to drop it and put him back inside. The poor thing was curled up on the soil, blood speckled on its wood-brown spikes. It was breathing heavily. We weren’t sure if the blood was from Dexter’s mouth, wounds on the hedgehog, or both. We hoped it was from Dexter, but doubted it all was. After standing over it with a phone light for 10 minutes, we decided to go inside and return a little while later to see if it had left. 20 minutes later we returned and it had left, leaving only small blood stains on the strands of grass next to where it had been cowering. We couldn’t find it in the garden anywhere, and Dexter hasn’t run around with a hedgehog corpse since, which would have certainly happened if it was in the garden. I’ve convinced myself that the hedgehog is still alive somewhere as that ending makes me feel better. Unfortunately, I know that it is probably unlikely to be true, and the poor thing probably ran off to take refuge somewhere else away from the danger, only to suffer and die. That thought isn’t nice.

The next evening, last night, I was soundly asleep with all of the windows open. There is a heatwave in the UK at the minute and it is incredibly humid, especially during the night. I woke up to the sound of my dad shouting at Dexter. Earlier on in the day, we noticed a baby bird hopping around on the ground in the garden. My sister said that this is normal when they leave the nest as it takes them some time to learn to fly. We watched it hop around before it took refuge in a small corner of the garden. It was incredibly cute. Knowing where it was, we kept the dogs away from that spot. My sister had then let the dogs out in the front garden that night to go to the toilet before bed. She thought that the front garden would be safer than the back, as the back garden was where we had seen the baby bird and where the hedgehog had been the previous night. Dexter had apparently made some unusual sounds, and she had rushed over to find that he had the baby bird in his mouth and was shaking it. I’d been woken up by my dad shouting at him to drop it. He eventually did, and the bird was still alive, though my sister doubted it would be for much longer.

That happened at about 00:30. I lay awake for a while afterwards. In my head, I watched as the bird’s bones and feathers were compressed by the dog’s jaw. It bothered me that I lay there peacefully in bed, but outside there was a young creature probably calling out for its mother; the last gasps of helplessness before it succumbed to its injuries. All of a sudden, I felt a strong connection to it. I saw myself laying there during the operation. I felt the surgeon saying the words to the other specialists in the room – “It’s worse than we thought. What can we possibly do to save this young man’s life?” I felt the void open in my mind as I sat there in the hospital bed days later, listening to the news that they have tried what they can, but that the tumour is more established than they could have anticipated. At some point among this noise, I fell asleep, putting an end to the bleak safari that I was taking myself on.

It was short-lived, though. I woke up at 03:00 with a bad indigestion-type pain in my abdomen. That was familiar – it was the original symptom that I had tried to get diagnosed for over a year during the Covid lockdowns. The familiarity provided no comfort, quite the opposite. My body was mimicking my dark fantasies from a few hours ago. It was writing the story for me, telling me that something has changed, that things have gotten worse. I rolled over every few minutes. Each time I closed my eyes and told myself that I was being stupid, but that voice was quieter than the other one. “It’s spread,” it screamed. “You know that it’s spread!”

As I lay there, I started obsessively thinking about the tumour surrounding the artery. I thought about it strangling it, spewing the cancer throughout my bloodstream and forcing tumours throughout my body, wherever it cared to devise them. I felt like I could feel them. It’s the most sinister feeling I’ve ever had about the cancer. I’ve felt scared before, but I’ve never felt so inwardly disgusted by own my body. It felt like the enemy. My mind was wandering; I wasn’t viewing this story as one with a hung ending, providing the potential of different endings, some good and some bad… I was viewing it as a conclusive story – the cancer is spreading, the surgery will be unsuccessful, I won’t recover from this.

Today, as I drove back from an appointment at the hospital, I noticed a single raindrop land on the windscreen of the car. It felt pronounced, yet inconspicuous. I sat waiting for another rain drop to hit, but it didn’t come. “Did you just see that single raindrop?” I said to my mum. It fascinated me. Then, another single raindrop hit. A few seconds passed, and the storm came. A flood of thin rain dotted the windscreen. I smiled to myself. “That was so strange,” I announced to my mum, wondering if she knew what I was talking about, or was just entertaining me as a show of support for my deteriorating mental state.

For whatever reason, I seem to be finding a lot of stories in the world around me at the minute. A lot of those stories are not going in a good direction, probably influenced by the stresses of the looming surgery, and a return to that tense state that I found myself in last week. The raindrops on the screen left me in suspense – what was going to happen? Why did a single droplet reveal itself right in my line of sight? When the rain finally came, I felt a rush of adrenaline as the story concluded before my very eyes. I had been scanning my mirrors to see if the raindrop could have come from any trees by the road. There weren’t any. For a few seconds, it baffled me. Then, when the rain came, I felt relieved.

Maybe there was a chance that my story could end with a positive outcome. Maybe the tumour will be different to how it looked on the scan; maybe they will even be able to remove the whole thing in the surgery and carry out a full Whipple procedure. Even if they don’t, the NanoKnife could do a serious number on it. NanoKnife may even get rid of it, even if the surgeon was reluctant to emphasise this point, due to a lack of evidence of NanoKnife being used to treat pancreatic cancer. I just don’t know the end of the story yet and I need to stop trying to predict it based on my negative thoughts. I’m here for the ride either way so I need to focus on enjoying it… It just seems impossible, sometimes.

Dealing with Cancer: Support Groups

Dee, Robbie, Me, Anna: Having Lunch 04.07.22

Support groups are a common recommendation to cancer sufferers. I’ve heard various views from others about them and have a few of my own experiences now. My overall feeling is positive, but it has taken me a little bit of time to find some that felt right for me. Even now, where I feel that I am comfortable with my diagnosis and possible fate, I can find them tough. None of the ones I attend are regular meetings and I have not become part of a group so much. I’ve more found myself joining events, where we all come together and share our experiences in some way. There are a few charities that I am becoming more familiar with which I have found helpful for different reasons.

A few nights ago I participated in the Perkatory event for Elephants and Tea, a not-for-profit based in the United States who support Adolescents and Young Adults (AYA) suffering from cancer. Six of us were asked to read out our Dear Cancer letters on the call – we were all published in their most recent magazine edition, alongside a number of others. As the magazine’s organisers are American, it was scheduled for early evening EDT. That meant that it was at 19:00 for the majority of those on the call. Many of those who joined were audience members, so I’m not sure where they were all joining from, but everyone else who was reading were based in the united states. I was joining at midnight in the UK. I’m not very good at staying awake that late, so I was already forcing my eyes open when the call started and it lasted for an hour and a half. Luckily, the content was all very interesting and there were some fantastic pieces being read out. That made it easier to stay awake, but also harder to fall asleep once the time came. I’d fought through the tired period and was in the deliriously awake phase.

It took me a little while to hear about the AYA community. There are some good charities around that specifically target the group, such as Shine in the UK, and Elephants and Tea in the US. Before I realised that these charities existed, I tried to go to a support group at The Maggie Centre in Manchester. It wasn’t sold as a support group per se, as it was a creative writing course. Its function was to act as a support group, though, utilising creative writing as a means of seeking catharsis, and specifically utilising writing as a means of processing your feelings in front of a group, as it allows you to open up in a less direct way. Seeing as I had created the blog at this point and was starting to do a little bit of creative writing, I thought it would be a good opportunity to both seek support whilst improving a new skill. Unfortunately, it wasn’t quite what I thought it would be. Firstly, it wasn’t a ‘course’. Perhaps I should have realised that beforehand, but I didn’t. For some reason, I thought we would be learning skills and techniques for creative writing – how to develop characters, make our plots believable etc. I had built it up to be an actual training course in creative writing, but it wasn’t. That is my own fault for not looking into it enough.

The course was actually more for poetry, but it wasn’t about bettering your poetry necessarily. Our instructor would give us certain prompts and encourage us to talk about our experience through those prompts, but it was all very ‘free flow’. We’d have a few minutes to write about something based on a prompt. Some of it was extremely creative, including the methods used to diversify people’s prompts. For example, in the first game we were asked to choose a number between 1 and 100. Once we had all chosen, we were asked for our number one by one. The woman who ran the group would then refer to her magazine, which had a list of ‘100 Best Tips for Improving Your Life Without Trying’, or something to that effect. Once we had a list of the tips which adhered to the numbers we had chosen, we had 5 minutes to write something based on them. It was a cool idea. Inspiration didn’t rush to me, but I got a few lines together. That aspect of the session I really liked – it was fun to hear what others had written and how they used the prompts to pull out their experience. My main issue with the group slowly revealed itself, however, as I listened to what others had to say.

What I did not realise before the session was that the context of each person’s experience with cancer is extremely important in how useful it can be for you… or that is my opinion, anyway. This group was all people who were either bereaved, with a loved one passing away from cancer, or people in remission, with some even considered to be cured as they had been rid of their cancer for years. Although it was interesting to hear their perspectives, it did not feel particularly helpful to me in this context. At this point, I was a few weeks into chemotherapy and still rather terrified of my diagnosis. There is probably an argument that listening to someone in remission’s views on cancer could be encouraging, but I wasn’t in a place where I was ready to hear it. It was not the poems of the people in remission which troubled me, though, it was the poems from those who were bereaved.

I sat listening to a woman’s poem who had tragically lost her husband to cancer a few years prior. Her poem described the pain she experienced on a daily basis, even years after his passing. She described the emptiness that screamed out from the passenger seat in the car that they had bought together; the nights alone in bed. There was nowhere to hide – I was in a room of strangers, with one reciting to me the way that Anna will likely feel if I do die of cancer, or so I thought. I then started thinking about my family and friends – what would they feel? Her words were like glass shards pressing into my ears. I wanted to cover them and scream just to make it go away. All of my greatest fears were dancing around my head. It wasn’t enough to be scared of my own fate at the hands of my cancer, facing an unknown future containing boundless amounts of personal pain… I now had to imagine how that would impact my loved ones. I tried to tune out but it was impossible. After about 20 minutes of this, my GP called me to discuss a few issues I had been having. I was expecting the call, so had warned the woman leading the session that I’d need to excuse myself at some point. As I left the room to answer the call, I breathed a sigh of relief. “Thank God,” I said to myself as I shut the door behind me, “I can take my mind off my family’s grief and just talk about my stupid deadly cancer.”

The GP was calling me to discuss a recent episode that I had experienced. Just as I had fallen asleep the night before, I’d suddenly bolted awake. Straight away, my mind was in panic mode, but I had no idea why. Nothing I did would relieve it. I paced the room, telling a very tired Anna that I couldn’t settle. I downed water, made my way through a few yoga poses and tried to breath slowly, but none of it worked. Eventually, I grabbed my puppy Lucy and lay in bed hugging her. I woke up with her in my arms at 5am. I must have nodded off. I woke up feeling tired but better. The experience had shaken me and I’d left a voicemail with my GP that morning – this was her returning my call. Despite this being quite a traumatic event, it was a welcome distraction to what I was experiencing in the creative writing course.

The fact is this: the group that surrounds you is important. If you struggle to relate to the experience being beamed at you, it may in fact cause you more distress as opposed to relieving you of any. Hearing the perspective of someone who had been bereaved did not provide me with a useful perspective for where I was at in my journey. It gave me a direct line into one of my biggest fears – that the ones I love most, my family and closest friends, may struggle to get past my death for years, if it comes at the hand of my cancer. Such a perspective served no purpose in my life at that time.

Since then, I have found some use in hearing those words. I have decided that I need to support my family as much as possible whilst I am healthy enough to do so, so they do not reflect on my cancer as evil, immoral, or any other negative adjective. Whatever happens with my cancer happens. If I miraculously live until 70 or die next week, it shouldn’t matter. I’ve had a good life and everyone who cares for me should relish in that. Any sadness they experience is for a good reason, because we cared for each other dearly, made amazing memories together and changed each other’s lives for the better. If that isn’t something to celebrate, then I don’t know what is. It is easy for me to say these things now, and I would struggle to implement them if it was my friend or family going through this, but I’d like to think that I would find a way to over time. I really hope that they do if it comes to that.

Another problem with the group was more physical… they were all very different ages to me. All of them were over 60 years old. That is not always a problem per se, but it does contribute to you feeling that you cannot relate to all of the experiences that they speak of. The same thing can be applied the opposite way around – if a 65 year old attended a support group where all attendees were young cancer sufferers, they may struggle to relate with some of the specific issues being raised. Of course, some issues you can relate to each other over. I attended a few sessions with Pancreatic Cancer UK, and that common link (i.e. the fact that we all had pancreatic cancer) helped to bridge this divide. There were many people on that call who had a very similar experience to me, and it really helped to hear their perspectives. In this session, however, no one had the same cancer as me. The result is another wall forming between you and those around you. It makes you feel like you are in the wrong place and doing the wrong thing. That alienation does little to comfort you.

It doesn’t mean that I can relate to everyone just because they are within a certain number of years from me. In one of the sessions I attended, a man in his 40’s was making an argument that having Myeloma, a cancer of the blood, is hard compared to having a cancer where you have a physical tumour. He stated that not having a single place in the body that you feel you are fighting is difficult and leads to more mental stress. Although I understand his point, I sat feeling a little lost. I wasn’t going to start a debate on a support call, but it seemed an unusual place to raise such an issue, not that I think he shouldn’t raise it if he has it on his mind. I can’t see my tumour and have no physical concept of it really. The only difference is that I moan about my pancreas a lot, whereas I’d imagine he complains about his blood a lot. I actually complain about my blood a lot too, but that’s because nurses constantly want to pull it out of my veins with needles, and I’d rather they wouldn’t. I understood that this was something he clearly felt, though. It isn’t so different to my thinking, when I sit reading pancreatic cancer statistics and feeling like I’d rather have any other cancer in the world. That doesn’t mean that I actually believe those thoughts, though. Cancer may make us more humble in general, but we retain our own superiority complex. Our cancer is the worst, our diagnosis is the most scary, we’re the most lucky if we overcome it and everyone should listen to our story because it is the most interesting. You can’t get rid of a cancer of the ego! Besides, I am the strongest person to ever fight pancreatic cancer; I bet it regrets trying it on with me now.

AYA charities are so important because getting cancer at a younger age is more unusual, though. Since joining a call with Shine, and getting involved with Elephants and Tea, I have felt a much stronger connection to the community. As I sat listening to the other’s reading their Dear Cancer letters, I felt a sense of unity. Even the audience members, many of them faceless avatars sat on a call, were engaging through the chat function. It felt heartwarming and special. That feeling overpowers a lot of the difficulties that I had experienced when attending the session at The Maggie Centre. It isn’t that I related to every single thing that was said on the call, with none of the attendees having the same cancer as me, but the setup just felt more right. It was people in their 20’s, 30’s and 40’s giving their perspective on their cancer. Some were in remission, some still fighting, some were stable.

Perhaps age was more irrelevant than I thought. When I think about the times I’ve felt a benefit from these type of sessions, the biggest factor has been how much I feel that I can relate to the people and the things being said. On the Pancreatic Cancer UK call there were many different ages and I related to all of them. We had similar struggles – the Folforinox chemotherapy, dealing with scary survival statistics and getting our heads around the constant Creon usage. When I joined the Shine call, we spoke about the constant drag that comes with a cancer diagnosis, and how we are always fighting an uphill battle with it. Then on the call with Elephants and Tea, we were united through a common purpose – writing cancer a letter, and exposing ourselves in whatever ways it affected us personally.

My issues with The Maggie Centre group were probably varied. The group already knew each other, so it felt like I was an outsider from the start. If I’d have carried on attending, that would have changed, of course. What would I have to sacrifice to continue attending, though? Hours of listening to perspectives which disturbed me and kept me awake at night… It wouldn’t have been worth it.

The fundamental issue felt that too many people in the group were at a different stage of the journey to me, or didn’t have the right perspective for me. People who are grieving are going through their own hell, full of painful challenges which haunt them, probably in a similar way to how a cancer diagnosis haunts its victim…but that doesn’t mean the journey is comparable. Grieving forces one to be conscious of the finality of death – an unwanted conclusion to someone’s story for those left to contemplate it. In my experience, I have always managed to muster some hope with my cancer. Even when it has felt bleak, I’ve known that I can still beat the odds. One day I may have to deal with a more final warning from an oncologist – but even then, I can attend clinical trials, keep running, getting myself to the gym and spending time with my loved ones. There is still a life to live so long as I am capable of pulling air into my lungs and I open my eyes every morning. Death does not provide that same comfort, but it does provide a different sort of comfort… a reassurance that their pain is over and a subtle reminder that billions have suffered the same fate, and we will continue to do so.

Even with me finding some support group-type activities which work better for me, I still think that they take a lot out of me. I’m sure that this is another thing of personal preference, but my experience tells me that it is tiring to do these things too often. Having a shared experience, hearing others utter things you have thought and said, is a powerful thing, but it doesn’t relieve you of those feelings. That sense of community is amazing and has its place in my personal struggle. It is still hard to listen to other people’s trauma and pain. For me, I need space to try and live as normal a life as I can under the circumstances. That is the best therapy for me. Sitting around with friends laughing, getting to the gym and playing with my dog Lucy are all amazingly therapeutic for me. After all, I am not just Pancreatic Dan the Cancer Man, I am Dan the runner, Dan the sausage dog owner, Dan the brother etc. My life isn’t my cancer, no matter how much it dominates my time and energy. I know people who refuse to attend any kind of sessions about cancer, and others who have thrown themselves into things like group sessions. They certainly have a place in my life, and I like to dedicate my time to them, but I don’t like to throw myself into them weekly. I still haven’t established quite how often that I think they most benefit me, but I know that I need a little time to unwind after them, even if I leave them feeling positive and happy. The AYA charities are helping me find sessions which do benefit me in a unique way, and I can’t wait to attend more of them in the future… especially if I get to read out a piece I have written, like I did at the Elephants and Tea Perkatory event. Me me me me me!

WeightWatchers, The Antithesis

The Road to Recovery

2015 – The Weight Training Days; My Head Looks Tiny

How long does it take to put on weight? Is 8 days enough time to put on considerable weight, or is there a significant delay between eating the fatty foods and putting on the body fat? These are the questions bouncing around my head as I stand on the scales this Thursday morning to see that I have lost 2 kgs since yesterday morning. Apparently, the 5 flapjacks, 3 slices of banana bread, full-fat milk and peanut butter protein shake, abundant cheese on toast lunch and peanut noodle dinner just didn’t cut it. I thought I’d had a good day of putting on weight yesterday. The scales disagreed.

My weight started at 75.45kg as I checked it on Wednesday morning. It was time to start bulking before the big operation, just as the dietician had ordered. The challenge was clear – eat as much as you can, as often as you can. If you look at the packet and see a red colour in the ‘saturated fat’ box, eat twice as much of it. Fruit is fine, just dip it in butter first. Strawberries and cream? Throw those strawberries in the bin and double the cream. Double the double cream. Do they do quadruple cream? Who cares, make your own by combining two tubs of double cream! Put down that banana and eat more chocolate. Why are you crying? Most people would kill to be in this position.

I have major surgery on July 8th. At my pre-surgery appointment with the dietician, she advised me to indulge in all the foods I’d usually limit in preparation for the surgery. I will be losing a lot of body weight afterwards, so the additional weight will help me over the next few weeks. She also advised me to start strength training in addition to my running as it would help me recover faster. The resulting equation makes me think of those videos that you see of athletes’ diets, where they need to take on 8,000 calories a day to maintain their training schedule. The most infamous one I can think of is the US swimmer Michael Phelps diet where he was trying to take on 8,000 to 10,000 a day during training. I’m not comparing myself to him of course, I could never eat that many calories in one day (apparently); I could easily match his world-record swimming times, though.

This morning, as I prepared myself to step onto those scales again, I had a satisfying feeling running through my body. “I ate so many buttery things yesterday,” I thought to myself, “I’m going to weigh so much today.” As I took my place on my pedestal, ready to accept my ‘greatest gainer’ award, I watched the numbers bounce around. Eventually they settled on a number that I wasn’t expecting. 73.3kg. I’d lost 2kgs.. Well, damn it. I’m sure your weight does vary a lot based on how much water you have drank, how much food you are processing at the time etc, but this still felt disappointing. I’ve never felt so disappointed at losing weight; I’ve rarely felt anything about weight. I’ve never weighed myself consistently enough to care.

The truth is, I’ve never paid much attention to my weight. I’ve always exercised enough that it hasn’t been a problem. My family also seem to benefit from good metabolisms, as far as I can tell. We’re all quite skinny, but everyone does also exercise a good amount. We were brought up seeing my parents being active. It’s always been the way with us – you need to keep fit enough that you can eat an obscene amount of cake and feel absolved in doing so. I watch my dad do it every day, although he has slowed down on the exercise now he is in his mid 60s; the cake eating is going as well as ever.

When I was 16, exercise was all about weight training. The only cardiovascular exercise I did was when playing squash. This continued until I was about 22. I then started to commit myself more to running, cycling and other, more cardiovascular-focused activities. The dopamine hit was getting addictive and I didn’t care so much about having a muscular physique. My main objective was to look good when I was weight training, but I was realising that feeling good was a much more attractive prospect. Cardio made me feel much better than weight training. I clung on to the weight training for another few years, not wanting to lose too much of my muscle mass after so many years of hard work, before throwing in the towel completely when I entered my first marathon. Run run run – that was my new life. Harnessing my inner Forrest Gump, I decided that the running life was for me.

It was a few years later, in 2019, that I started to weight train again. I was living in Philadelphia in an apartment paid for by the company. There was a gym in the building. It wasn’t amazing, but it was right on my doorstep. Closer, actually. It was in my basement, just an elevator ride away. I felt like my running was stagnating and I couldn’t figure out why. The training was brutal – 6 days a week, 45 miles or more total distance – but I always did it. After doing some research online, I’d read that strength training is an essential part in improving your running. That convinced me to figure out a new strength routine and make room for it in my busy workout schedule. I’d get up at 6am to go to the gym, or I’d finish my run in the basement. It was nice to be back to the weight training with a different purpose beyond getting ‘buff’. I was using lower weights and doing more body-balance type exercises.

When covid struck and I was brought back from the US, I didn’t bother joining a gym. They weren’t open for a few months because of the lockdowns anyway. Running was still a staple in my schedule, as I was now training for the 100-mile GB ultra, which I was due to do with my brother, Greg. I randomly ran a marathon one Saturday as part of my training. I felt like I was fitter than ever. All that running took its toll, though, and I sustained a knee injury. After seeing a physio, I discovered that it was caused by an imbalance in hip strength. The strength training was back in the fold and I had a plan drawn up by the physio of home-friendly workouts. One of the exercises required me to fill a backpack with books and do one-legged squats… only in the pandemic would you find me filling a bag with books and using the lounge furniture as an exercise bench. What a novel time that was!

It was around this time that I discovered yoga. Once my injury was better, I relied on yoga to keep my muscles in good shape. The strength training was gone, but the yoga improved flexibility and ensured that blood was flowing to those tight places. I was always finding excuses to get rid of the strength training again – it felt like old ground to me and I had done nothing but that for years when I was younger. Yoga and running were now my staples and remained so until I fell ill, ceasing all physical activity until a few cycles into chemotherapy, when I realised that I could still run. It’s been tough but I’ve managed to achieve some consistency these days. Towards the end of chemotherapy, it got very difficult, but I do around 3 or 4 days running a week now, even if it is mostly 5Ks.

On Wednesday, I signed up for the gym across from my parent’s house. It is a small gym, located above a few shops and accessible by a door around the side of them. You make your way up a staircase to access the gym. It is actually the first gym I ever went to when I was about 14. It has changed hands now, has been refurbished and is open 24 hours a day, accessible with a fob. As I walked around it on Wednesday after being inducted, it felt strange. I’d spent so much time in there when I was younger. I remember watching a particular developed guy that was in my year at school doing the max weight on the chest press machine when I was younger, and wondering how on earth he could do such a thing. It was amazing to me. There were about 8 people standing around him watching him do it. It was impressive for a 14-year-old. My dad used to participate in a competition on the rowing machines – who could row 2500m the fastest. He was top of the leaderboard, despite some of the other competitors being nearly half his age. It made him proud. I’d done it a few times with him, but it wasn’t for me.

After going to the gym on Wednesday, I then went running with my friend, Finch. I only did 5K. My legs felt like jelly for the initial 10 minutes after doing squats for the first time in 2 years. Perhaps that is why my weight was so low this morning – your muscles have to break down before they build back stronger, right?

Maybe I should be lowering the amount of exercise I am doing. It feels so unnatural to me to just cram calories and not balance it out with more work, though. I’ve never been a fan of eating for the sake of eating. I know that this is different as I have a good reason to do so, but I can’t figure out what the right balance is. The thought of eating so much high-calorie food and not countering it with some sort of exercise just doesn’t seem natural to me. Usually, I’d do a long run which would allow me to eat anything and everything in sight. Burning calories is the mechanism which permits me to take more on. I’m doing that to an extent, but I’m not used to watching my weight so closely in the process. Perhaps I’m overthinking it all. I know that I have stepped up the amount I’m eating the past few days. Surely that will result in me gaining weight eventully. Tuesday night I made a mushroom and miso risotto. Piling my plate up higher than ever, I thought I was excited to eat it. By the end, I had to go to bed early because it made me feel so sick. I’d overdone it. That day I had been out for lunch too – I even got a dessert in the middle of the day. What luxury!

So, at around 11am today, I made my way over to the gym again, feeling more determined than ever after my disagreement with the scales that morning. As I left, I saw a bee struggling on the floor. It was on its side and only occasionally moving its legs. I remember seeing on the news that if you see a bee in this state, they probably need some energy. My mind considered just leaving it be – the nature documentary approach – what happens in nature, happens, and who am I to play God with it. I couldn’t do it; God is in my name afterall. I ran back into the house, stirred some sugar into water in a small glass, then went outside and trickled it next to the bee. Satisfied that I had tried to do something (which was better than nothing), I proceeded to the gym. There was a woman outside smoking. I made my way up the stairs and into the weights room, deciding to start with a few back exercises before moving on to working on my chest. Then I’d do legs, before finishing on arms. Easy.

Halfway through my routine, I walked into the cardio room to get some more water. The woman who had been outside smoking was sitting on the exercise bike, leisurely turning the pedals and watching videos on her phone. “She’d be better than me at putting on weight,” I thought to myself. Has there ever been a stranger brand of jealousy? Stop it, Dan. Bitterness won’t increase your weight. Your judging someone on silly things anyway – all of the professional footballers used to smoke 50 years ago and they were healthy. Not as healthy as the ones who didn’t smoke, but you know what I mean. The doctors were probably still recommending smoking at that time, stating it helps you to lose weight; maybe it does help you lose weight… Good job I don’t smoke. I’d be eating my cigarettes now if I did.

I was in the gym for about 50 minutes. As I walked up the drive when I got home, I remembered about the bee I had attempted to revive. The bee was standing upright now and there were ants everywhere, including one standing on its back. An unconsidered and unwanted result of pouring sugary water on the floor was that the ants were now having a field day. They seemed to be mostly leaving the bee alone, at least. The bee was using its legs to wipe its face. It seemed to have more energy than earlier but it still wasn’t flying off. I tried to poke it a bit, but that didn’t seem especially helpful. My David Attenborough moment was here. Although I want the bee to live, it was beyond my control. I stood up and wished it well, before making my way inside. It was time to eat again; I didn’t feel excited.

Pre-Operation Probe

The Road to Recovery

Baking Bread – The New Morning Routine

The past few days have flown by and I’ve barely been cognisant of how long it has been since I last posted. This morning I checked and saw that five days had passed. Readers may believe that I’ve been in a paralysed state, terrified of surgery and cowering from the outside world, too stressed to interact with it. Thankfully, the opposite is true. I’ve been overindulging in plans, getting out of the house and keeping myself busy. I’ve seen a lot of friends and family and had a lovely few days. Particularly inspiring was my friend Flo’s speech at a University of Bath Alumni event. Last year, she rowed across the Atlantic with two of her friends, becoming the youngest female team to ever complete the 60-day journey. Her speech was centred around the theme of ‘opportunities’ and taking them. It was extremely inspiring and even included some embarrassing pictures of us from university on the screen. Larissa and I were giggling as they flashed up behind Flo whilst she spoke. But today is Monday, and Monday demands a return to normality; a banging drum that reminds you of the seven-day cycle to which you must adhere. When the weekend’s potential is spent, you are forced to readdress whatever is sitting on your to-do list.

Larrisa, Me, Flo at the Bath Event

I woke up with a few things on my to-do list today. Bake bread, fill in the online questionnaire for my pre-op appointment at Manchester Royal Infirmary (MRI), attend the appointment at MRI and, of course, finally write another damn blog post. It isn’t necessarily in that order of importance, but it is in the order of service. As I write this, at 11:50am, I have left the bread to prove for the final time before going into the oven, have baked some ginger biscuits and have filled in the online questionnaire for the hospital appointment. No doubt I’ll have to come back to this post and continue writing several times over the day, making editing it a labyrinth of differing tenses, incorrect assumptions and interesting events which demand inclusion after the fact. That’s fine, though. I guess the game for the readers is to spot these things now – a sort of ‘Where’s Wally? Ebb and Flow’ edition, where you’re on the lookout for grammatical and contextual inconsistencies as opposed to a man in a red and white striped top.

My family and friends have come together well in response to the news of the surgery. Mostly. There has been the odd moment where I sense someone is more upset than they’re letting on, or where I feel a little let-down at the lack of support, but these things are quite normal I find. Besides, when I feel let down, I recognise that more as me demanding more from someone than they are perhaps able or willing to give at that time. That helps me move past those thoughts. It is much better to make a beast of yourself and never rely on anyone else for any support, ever. Of course, I am being facetious, but you do have to become thick-skinned when dealing with cancer. No matter how supportive your network is, they can’t be there all of the time. You still find yourself laying in bed at 5am, unable to sleep and frustrated with the world. Those are the moments where you feel most alone and your ability to cope is really tested. Mine is standing up to scrutiny so far. The only time I have cried since finding out about the surgery was when I was trying to comfort my brother Greg on the phone, only to spiral off on a tangent and spit out sentence after sentence of doom-speak. Perhaps I needed that; I’ve felt very positive ever since. I am frequently waking up at 5:00, which is annoying.

The appointment at the hospital was at 14:30. I wasn’t really sure what a pre-op appointment would consist of. There are a few things that I could have guessed would occur – at least one blood test (they never let you out of the hospital without taking some of that red gold from your veins when you have cancer), a long questionnaire and at least one thing that I didn’t expect but that is very uncomfortable. Guess what, it offered up all three. My favourite kind of hospital day.

First up was the questionnaire. Considering my surgery is a major one that may last from 9:00 until 18:00 in the evening, I don’t mind answering a long list of questions. It is probably required more than ever. I’m hopeful that I’ll be under every type of drug available to man which will make the experience more pleasant for me; if I have to answer 5000 questions to make that possible, then so be it. I’ll talk to you about the inner workings of every bowel movement if it grants me the top tier of pain relief. Hell, I’ll let you observe me on the toilet and then study the result with you if it’ll convince you that I can withstand 5kgs of ketamine and a couple of barrels of general anaesthetic.

It was during this questionnaire that the uncomfortable moment revealed itself. “Have you been admitted to hospital in the last twelve months?” The nurse asked me. I responded by telling her that I had been admitted to King’s College after my diagnosis, as I needed a stent installed in my bile duct. That is where she warned me that things were about to get a bit ‘unusual’.

She went to a medical trolley which sat in the corner of the room and opened up a drawer. Out of that drawer, she pulled a sealed plastic bag. Inside was a double-pronged cotton bud with a very long plastic stick to hold. There was then a long plastic tube which the cotton bud could be screwed into. “You need to insert this into your anus until there are faeces on the end of it. It’s to detect a bug that you may have picked up whilst in hospital.” I broke out laughing almost immediately. It was funny as I had just done a swab on my inner thigh and said to her “it’s quite a weird sensation rubbing a cotton bud there – you don’t often feel things in the crease between your leg and your thigh,” to which she had replied, “it may be getting weirder after this next question!” She was right – it was weirder than rubbing your thigh.

I’m not going into too much more detail about what happened afterwards, but you can see why I had bowels on my mind during that previous paragraph. What I will say is this, pushing something into your bum for the first time is a little disconcerting. A part of me wanted to go back and ask the nurse to help me, but I thought that might be a little awkward. She didn’t extend any offers when she told me the task at hand. I’m assuming that she may have done that when she was young and naive, only learning through experience that by offering you do in fact have to assist if they call your bluff. I would have been calling her bluff. I thought about asking my fiancee Anna to come and have a go. That has the potential to kill the relationship, though. “Hey honey, can you push this far enough into my anus so that a little bit of faeces is visible on the end?” There isn’t really a way to ask that question without it killing a little bit of your relationship at least. My mum was with her in the waiting room too – it might be a little embarrassing to broach the question with her there. I’m now writing it on a blog that many of my own family and my fiancee’s family read so I guess I’m not actually that embarrassed about it all. It’s knowledge sharing, Dan; someone else might be reading this in anticipation of their own pre-op. Just keep telling yourself that. That makes it way less weird that you’re writing this on the internet to be consumed by anyone, including your own colleagues.

The rest of the survey was pretty dry. The nurse had a nice and dry English humour about her. That makes it better. She sent me back to the waiting room and told me that I’d shortly be called to do bloods and an ECG. I was also told that once my bloods are done, I will have an opportunity to meet with an anaesthetist to talk about that side of the procedure in more detail. After returning to the waiting room for about five minutes, I was called into the bloods office.

Bloods were pretty normal. Me sitting there clenching my arm, pointing out that I have a scar on my vein from the number of times I’ve been stabbed in it. The nurse also had a dry sense of humour – perhaps working in a highly stressful environment, full of intense emotion and anxiety leads one to blunt their emotions and actively seek humour, wherever they may extract it from a situation? Just a thought. The true extent of this humour didn’t come out until the ECG. “Take your top off then, let’s have a look at you,” she said. I warned her that I had a lot of tattoos; she told me that she was still married. As I lay on the bed with her attaching stickers all over my body, I started to discuss where the incision may be on my stomach. I have a tattoo of a man dangling from a star in the middle of my abdomen, starting just below my chest and finishing just above my belly button. I told the nurse that I’d been wondering where the incision would interrupt the tattoo – whether it would mercilessly kill the man directly, or whether it would cut off the rope which we assume is sparing his life. She told me she wasn’t sure. I told her that it probably didn’t matter either way, as he’d be dead whether it was him or the rope that was cut. I think I’d reached the boundary of her humour with a patient – she probably thought I was sympathising with the tattoo a little too much for it to not be a projection of what I assume would happen to me during surgery. I really did just think it was a funny concept; it’s one of my favourite tattoos and it’s being ruined – I have to find the humour in it somehow.

The Tattoo on My Abdomen

Back to the waiting room in anticipation of the meeting with the anaesthetist. Anna pointed out that they are some of the smartest people in the medical profession as they constantly have to keep calculations in their heads; I still question this. If an accountant does not have to do any adding or taking away without a calculator, why would an anaesthetist have to figure a lot of important information out in their head? I wasn’t buying that. I’m sure they are extremely intelligent people, though. What I really want them to be is incredibly liberal. That is far more advantageous for me. Drugs, drugs, drugs. I want them to feed me so many drugs that I wake up in 2031 when they have finally found the cure for cancer and are administering it directly into my brain, toe or elbow; wherever they have to stick the damn thing to get rid of it.

Another five minutes or so and we were called in. I have to give it to Anna – this woman did have an aura of intelligence about her. What she was saying, however, was less impressive. I sat there as she described how I’d have a drain in my body, how I’ll likely have a line in my neck, and how I might need an epidural. I’m not sure what my face looked like as she was speaking, but I’m pretty sure there was a blatant look of concern slowly forming in my expression. There were so many words that I did not want to be hearing in relation to my body. Even the whole “if we need to give you a blood transfusion, are you ok with that?” thing is a little bit much for me – I immediately just imagine bags of blood and want to throw up. Maybe all the blood that I’ve been giving to the hospital will benefit me in the end, when they give me a load of it back to try to save my life after an operation… hopefully that won’t be necessary, though. I know that they don’t really keep your blood after blood tests by the way, but it’s fun to imagine the staff constantly adding it to a large oil carton with a ‘Dan Godley’ label on the side.

I left the conversation with the anaesthetist feeling more queasy and anxious than I’ve felt in a while. It was a healthy dose of reality – that this is really happening, that it is really complex and that it is actually happening soon. 9:00 until 18:00 – that’s more than the average work day. I don’t even wake up feeling well-rested afterwards. The anaesthetist warned me that I’d be very tired for a week or so. That was probably underselling what the worst of recovery is. I haven’t heard many who have come out of major surgery only complaining of how tired they are, but I guess I’ll be finding that out the hard way.

And that was that – the pre-op was done. Assuming that I don’t fail any blood tests or get told that I have one of these bugs from my previous hospital visits, I should be good. Tomorrow I’m back at MRI for a meeting with the dietician team. Hopefully, they won’t require me to put anything in my anus, but I won’t assume too much. You can never be sure what might happen with these appointments; once upon a time, I went to A&E expecting to be home at an annoyingly late time but with my abdominal pain sorted – that meeting spiralled into 5 weeks of uncertainty before receiving a cancer diagnosis. You never know what life will throw at you, but you start to get an idea when you still find yourself frequenting hospitals eight months later… sometimes you get told you have cancer, sometimes you stick a swab into your anus, and sometimes you probably do both. At least those things were eight months apart for me.

Surgery Date

The Road to Recovery

You’ll have to excuse the constant posting about surgery, but it is a bit of a hot topic at the minute. The headline is that I have a surgery date – Friday, July 8th. I need to get to the hospital nice and early – for 7:15am that morning. Upon hearing the time, as the scheduler spoke to me on the phone, I briefly thought to myself, “I’m going to be shattered,” but then I realised that I am going to the hospital to be put asleep/knocked out for approximately ten hours during surgery, followed by days in intensive care recovering from whatever they manage to do to me to improve my cancer. I’m pretty sure I’ll find a way to not worry about how tired I may be after my 5:30am wakeup on that first day. That was a thought that certainly didn’t age well in the five seconds it existed in my head; I travelled from an innocent thought about being tired, to tyrannical thoughts about surgeons playing Operation on my real-life body. Come to think of it, the Whipple procedure may have been thought up as a surgeon was playing the board game Operation considering the aim of the game is to remove all of the organs out of a body; that doesn’t sound too far away from what the Whipple procedure aims to do to your digestive tract.

The surgeon told us in our first meeting with him that the best-case scenario will require about ten days in the hospital. The worst-case scenario that he has experienced with someone he has personally operated on was two months in hospital, where there were many complications. Luckily, he has never had anyone die on him, but he did say that a colleague in his team has. I think that was a veiled dig at his colleague; these surgeons are a competitive lot, even in the most serious of circumstances. I left the hospital thanking the universe that it was him performing the operation and not his colleague, even though I’m sure his colleague is a very skilled and diligent individual. I just don’t want to chance it, really. Although, given that it is such a long procedure, perhaps they work it by tagging in different members of the team like a wrestling tag match. Damnit. Don’t think of it, Dan. It won’t matter to you no matter what happens, you’ll be out like a light.

Specific complications that the surgeon called out included the pancreas leaking pancreatic fluid, the patient needing blood transfusions and I must have blocked out the rest of the list because I can’t remember any more examples. Leaking pancreatic fluid sounds pretty gross, I know that much. I remember him telling me that Nano-knife works by applying a small shot of electricity. The shock is supposed to be small enough so as not to produce too much additional heat, but I think he said that there is a risk that the heat could damage my organs. Maybe I’m remembering that wrong, I’m not sure. The meeting is a little hazy now, so trying to piece together the specific things that were said, and why they were said, is difficult. He definitely spoke about how the Nano-knife technique produces a small amount of heat and spoke about why they wanted to minimise this, but I think that I was high on adrenaline at this point and simply nodding my head and smiling, in a picture probably reminiscent of Christian Bale in American Psycho. For some reason, I always find myself being more upbeat in these meetings; I’ve probably creeped out every oncologist, doctor and surgeon that I’ve met who has been involved in the process. During my diagnosis, I actually started laughing when the doctor said “it’s bad news I’m afraid.” I couldn’t help but feel like I was in a drama on TV and couldn’t believe the news was actually being delivered like this. I was waiting for the Eastenders theme tune to start playing, but it didn’t.

There are a few questions that the surgery has raised, but the most important one is this: is five weeks enough time to recover and go on my stag do? We’re assuming so because otherwise a lot of plans have to be changed. What plans specifically, I’m not sure, as I wasn’t invited to the sleepover where they all drew up the sinister blueprints for the weekend. Luckily, I have literally centimetres of cancer in my pancreas (2.1cm to be exact), so they aren’t allowed to physically or emotionally traumatise me too much. That is how it works, right? Surely I’m not expected to join in with the Frosty Jacks boat races or anything. If Frosty Jacks boat races were not on the agenda already, I’m certain it will be after my best man Luke reads that sentence. He’ll kick himself for not putting it in the schedule already.

For those of you who don’t live in the UK, or who lived a much healthier teenage life than me and my friends, Frosty Jacks is a cheap cider which has an alcohol content of 7.5%. When we were younger, you could buy a 3-litre bottle of it for about £3.50, which is absolutely crazy. It has something like 22.5 units in a bottle and we drank them quite religiously from the age of 16 to about 18. If I tried to drink it now, it may actually kill me, both because it is almost certainly 99% chemicals, but also because the amount of alcohol in it could last me six months with my current drinking habits, or lack of. The thought of actually drinking a 3-litre bottle of Frosty Jacks over the course of six months is so sad, come to think of it… And for those of you who don’t know what a boat race is, it is where you split your group into two teams who compete against each other. The two teams face each other on either side of a table. Starting from the same side, both individuals start to down their drink. When they finish, the person next to them can start drinking. That means that everyone focuses on the one member of their team who is currently drinking, making it quite a high-pressure situation, especially when you’ve already had a few drinks and are getting competitive. The winning team is the one that finishes their drinks first. A truly remarkable game to be discussing in a cancer blog, I’m sure you’ll agree. I haven’t played it in years and have no desire to, but we have to keep the blog content fresh somehow – it can’t all be ‘cancer this’ and ‘cancer that’!

One thing that my best man has shared with me is that he has started baking bread over the weekend. That got me riled up, as I’ve been meaning to start baking bread for a while. So yesterday, I baked my first wholemeal loaf. It actually went pretty well. Today I did it again to test whether it was a fluke. Another success. It’s actually quite easy and makes eating it far more rewarding. Tomorrow, I’m going to try and bake a wholemeal spelt loaf. I know what you’re thinking, “that’s got an entire additional word in the name!” It’s a crazy thing to dare to do, but I’m going to do it. Replacing the wholemeal flour with the wholemeal spelt flour might just be the downfall of my entire bread baking career. If it goes well, though, it’ll mean that I have two types of wholemeal loaf to make in future. High risk, high reward!

Half way through making some banana bread this afternoon, I received a call from Macmillan at Manchester Royal Infirmary. After my meeting with the surgeon last week at the hospital, I had spoken to the nurse about how I was feeling about things. I mentioned the financial concerns I had, which have been ever-present for months now ever since my employer made it impossible for me to return to work, yet only paid me a month’s full salary. Very nice of them. I truly believe that their HR department could receive ‘Worst HR Department in the UK’, which would be nice for them; I’m sure it is the only way they’d ever win an award.

Anyway, bitterness aside, the nurse had told me that she will get one of the Macmillan representatives at the hospital to call me and chat to me. Every time I see an ‘0161’ number calling me, my heart stops a little bit as it is the area code for Manchester, where the hospital is located. I’m always assuming it’ll be someone telling me some new development about my cancer. It was a relief to hear that it was Macmillan. The representative I spoke to was incredibly helpful. She spoke to me about all of the things that concerned me, offered to speak to my mum to further support her and said that she would get the financial advice team to call me after I have been discharged from the hospital, after the operation.

There was something in particular that she said which has really stuck with me and has given me such a lovely perspective. She stated that surgeons won’t decide to do something unless they see value in it, and that they believe that the pros will likely outweigh the cons of doing it. After all, it isn’t only my life at risk, but their own reputation (and pride too, probably). These decisions are highly calculated and scrutinised by an entire team of extremely skilled individuals. Not only that, but this is an expensive procedure to perform, requiring a complex surgery with a lot of equipment, and a long period in hospital afterwards for aftercare. Going ahead with it must mean that they perceive it worthy of that cost, which could be used elsewhere, for another patient.

Although I had thought of it in many different ways to help me process the news, I really hadn’t considered this one. It made me reconsider so much of the conversation that the surgeon had with me. He is always going to focus on the risks, concerns and potential issues – all of this information is incredibly important. If a patient walks out of that office not understanding the full extent of the consequences of agreeing to such an operation, they could end up agreeing to something that they, in fact, do not consent to at all. It is, therefore, the intent of the surgeon to ensure that the severity of the situation is communicated in the clearest of terms – that there is little evidence of how successful Nano-knife may be, that the operation is a major surgery and carries a lot of risk, and that my general diagnosis is a damning one, especially statistically. He also pointed out that most people in my position wouldn’t get an operation at all, but I am getting one, so they must see something different in the situation. Whether it is my age, health or diagnosis that they see as ‘different’, or a combination of those things, I don’t know. I don’t care, of course. I’m grateful that they made the decision that they did and I need to remind myself of that when I am fearful or anxious about the surgery. Surgery is what I wanted, and it was not guaranteed at all. It does create a strange dichotomy between the excitement of achieving that goal, yet knowing that it means I will be having a big operation, but that’s ok. Life is full of situations which leave us emotionally confused, being pulled in multiple directions at the same time. We are complex beings; we cannot expect ourselves to always feel certain we understand how we feel about a situation, especially where it is complex.

There is one last thing which I saw today that I thought was worth talking about. As my Twitter account is for the blog, and the primary things I follow on there are cancer-related accounts, I get a lot of cancer posts in my feed. Today on my feed, I saw the below post by the actress Mindy Kaling, who was put on my radar by the series The US Office, but has had her own show since, and has been in various big-budget films.

I thought that I was glad she was posting about it to her 11.5M followers. It has to be good for pancreatic cancer, I’d think. Spreading awareness on such a big platform is a great thing. Being nosy, I went to the comments. That’s where I found an …interesting… take. The following comment had been posted:

“What you’re doing is great but children with multiple malignant brain tumors with so much treatment that they suffer a stroke and end up paralyzed and still tumors in the brain that cannot be removed to cured.

I’m honestly not sure what the central point even is here, it is so confusing how it is written. It seems to continue adding new ideas as the sentence drags on. What I do know is this – it may have been written with the best of intentions, but certainly doesn’t come across well to me at all. Why do people find a way to apply some form of elitism to every topic? What benefit is there to treating cancer like it is a new edition of Top Trumps? Mindy posting that she supports pancreatic cancer gaining funding from the government does not mean that she does not support more funding going towards children with cancer, or any form of brain cancer research. Why this person thought that this was a helpful or mindful thing to say, I do not know. The two things are not mutually exclusive. Perhaps they actually know more than I do, and the additional money would be allocated from brain tumour research, in which case it may make more sense. They have not said this, though. Sometimes I really wonder what people’s intent is – I’m sure this person came in with the best of intentions, but what help does it really provide? Is it really an appropriate place to raise such an argument?
So, I want to make this clear – when I say that I believe pancreatic cancer needs more funding, given it has the top mortality rate of any common cancer, it does not mean that I want money diverted away from any other cancers necessarily, or that I don’t value the struggle that other cancers bring. Having said that, pancreatic cancer seems to be low down on the priority list, due to an average diagnosis age of 72 and difficulty diagnosing it early enough to do anything about it (in most cases). Of course, the second issue is also probably that way due to a lack of funding, which I believe to be because it has been designated as an ‘old person’ cancer, which relates it back to point one. It is a vicious circle.

No one will say the words ‘it’s fine if old people die’ publically, but that is essentially what is happening in terms of pancreatic cancer, and I do believe that it hurts the attractiveness of the cancer in terms of research funding. I understand that having such an old average age of diagnosis is a genuine consideration when dealing with cancer and research grants, as it is much harder to save people who fall ill at this age, but it seems to be becoming unjustifiable. I regularly see pancreatic cancer charities sharing posts stating that the survival rate has not changed in over 50 years – how is that acceptable with how quickly our technology seems to move? I’m sure that the other common cancers have experienced at least some improvements in this period, if not significant ones.

The overall lesson is simple, though. Think about what you write online. It may feel like it only matters to you, as you sit alone on your phone and decide to voice your opinion on something, but by writing it, you are throwing it out into the online ether for anyone and everyone to consume at their will. I’m not sure if this comment was trying to imply that so long as children get brain tumours, no other cancer is worthy of consideration, but if it is, that isn’t fair. It isn’t fair to make people who care about pancreatic cancer feel bad for doing so, and it isn’t fair to take away from the message of Mindy’s post. No one would disagree that the things being described by them are horrific, and if that has happened to someone this person knows then I feel even more sympathy, but it is not the only consideration at play. It is also not the place to make such an argument. Would they be happier if Mindy took the post down, choosing to only post about brain tumours instead? Will she see your comment and repent, or simply ignore you? I believe the latter is more likely.

Rant over (until the next one). One day closer to surgery!