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

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.

A Bump in the Road to Surgery

The Road to Recovery

The Last Supper – 05.07.22

Nothing is straightforward with cancer. I was driving in my car with my brother Alfie this morning when I got a call from an ‘0161’ number… Manchester’s area code. “Oh no. That’s probably the hospital calling,” I said to my brother. My jaw was already tensing up. What is this going to be… My surgery was scheduled for 7:15am on Friday 8th July – tomorrow morning.

I answered it on the hands-free system in the car and immediately recognised the voice to be that of the surgeon. My brother was sitting next to me and could hear everything as we drove down the dual-carriageway heading to the shops to pick up an online order. I always find it hard to recall the exact wording of conversations, especially ones which give me so much anxiety that I worry my stomach may pop out of my mouth. I’ve spoken to my brother about the exact wording a few times since and have landed on what I think is an accurate account of it.

After the usual pleasantries, I approximate the first sentence from the surgeon’s mouth to be this: “We’ve been reviewing your case this morning and we have some unfortunate news… your surgery can not go ahead this Friday,” he said. The brain has an amazing capability to run a million scenarios in a millisecond when it concerns something of high severity. My life is ultimately in the balance here, so I’d consider this to be of pretty high severity with regards to how important it is to me. In that split second that he paused, I had concluded that they had finally reviewed my more recent scans, that they had seen a spread, or determined something was worse than they originally thought, and that I was now destined to die within a week (the last part may be a slight exaggeration).

“There is a national shortage of the NanoKnife needles. We can’t get any in time for the surgery tomorrow. We’re looking to move your surgery to next Friday,” he continued. He was really apologetic. At one point, he even said “I know you will have been looking forward to the surgery, and I was looking forward to it too.” I can’t remember what my response was to this, but it has made me laugh a lot since. I love the idea of my surgeon sitting at home, excitedly reviewing his calendar for all of the different surgeries that he has going on that week. Upon seeing his next Whipple, the procedure I may be having, he gets giddy and says to himself “Yes! I get to do a Whipple on Friday! 10 hours of surgery to kick off the weekend! Woohoo!” He carries himself in such a professional manner in real life – I think that’s what makes the image so funny… and the fact that he described himself as ‘excited’ for the operation, of course. I’m sure that he was looking forward to it for the life-saving potential that the operation could present for a fellow human-being, but it is more fun to pretend that he was looking forward to it because he just loves scalping away at people’s organs. It sounds quite sinister when put like that.

Sinister seems to be an accurate description of the pancreas more generally. Ali Stunt, the CEO of Pancratic Cancer Action, told me that surgeons need a lot of experience before being allowed to operate on the pancreas. Her reasoning for this was that the pancreas is a fleshy, buttery texture, which makes it awkward to operate on. It also has a major artery around it, the one which my tumour has befriended and continuously hugs (to my dismay). As if all that wasn’t enough, it is also in a really awkward place to access during surgery, sitting behind other organs. The head of the pancreas is in a particularly awkward place so, of course, that is where my tumour decided to set up camp.

Ali then described it as a ‘weird’ organ. After hearing what she had to say about it, I thought it was a bit of an understatement. I decided in my head that I hate the pancreas even more than I did before. Not only is it a spiteful bastard, which once inhibited by a tumour stops you from digesting fat or regulating your bloodsugar levels properly, but it is also a creepy texture. Sinister. Creepy. Spiteful. All words that I hope no one ever uses to describe me, and I’m sure you hope no one uses to describe you either.

Most people probably don’t think about what their pancreas is up to even once a year; I wonder if mine is bothering to do anything about once every 5 minutes. I constantly have to assess my own stools to determine whether they are floating or beached, both indications that my body hasn’t absorbed the oil from the food. It is all very undignified. If they are either of those things, I have to think back to what I had eaten the day before and how much of my Creon supplement I had alongside it. I then have to increase it the next time that I eat that food, or something similar. Nothing makes food more enjoyable than constantly wondering how much fat is in it, how many Creon that fat translates into, and whether it’ll be enough to make my stools not float the next day. Perhaps I should start talking about this in detail every time I am eating, with everyone sat in close proximity to me. That’s one way to get yourself scratched off the invite list to every dinner party that you may have been invited to that year. I’d probably still get invited until after my wedding at least – no one wants to start a tit-for-tat invite war when there is a wedding on the horizon… it makes far more sense to stop speaking after they’ve drained me of all the food, booze and good times that they can; before the cancer potentially gets too serious and they have to ‘be there for me’.

Anyway… the surgery has been moved to next Friday, July 15th. It was a relief to hear that there wasn’t any bad news about my cancer spreading or surgery not being a possibility, but it was hard to calm down from the tense, anxious-filled state that I had found myself in since Wednesday morning.

Tuesday evening was the final plan I had before surgery. Me and some of my good friends went out for a meal at a local Italian restaurant. The table was set out awkwardly, making it feel a little like The Last Supper. I’m not suggesting that I am Jesus here, but I guess I would be in these circumstances. That means that someone in attendance was the snake who gave me cancer, if I am remembering and applying the story accurately. I’m probably not.

It was a lovely evening and we all laughed a lot. That night, I struggled to sleep. It was all over; nowhere left to hide. The next thing in my calendar on my phone read ‘Operation Day’. Finally it was coming, but I had another 48 hours to wait before it would. If I could have sold away those 48 hours until I was laying on that operating table and counting down from 10, I would have. All I wanted was to be knocked out. Every minute until then felt like torture if I gave myself enough time to think about it. I was trying to keep myself busy with work, baking and relaxing with family, but it was getting harder. Surgery was on my mind and my mind was on surgery.

Backing down from that place today was hard on me mentally. The tenseness did not go for a few hours. I needed to amp myself up as the surgery was approaching faster. Now I had to deflate myself again. The surgeon knew that, I’m sure. That is probably why he was so apologetic on the phone. It seemed very sincere. Now, I have to reset the clock in my mind. Another 7 days which I need to fill with more plans to distract from the surgery… I’m sure I can have a good go at that. The thought occurred to me that it is another 7 days where my cancer may spread, unabated by any treatment. I’m getting better at fighting those thoughts, but they still come sometimes. Worrying about it spreading won’t make it any less likely to happen, though, and I’m sure the risk of that happening in an additional 7 days is low… if I was warned that the chemotherapy side-affects can last for 3 months after the treatment ends, I’d hope that means that the chemotherapy is still doing something for that time too. Hopefully…

I wanted to keep this post short so all those that I haven’t spoken to personally know that I won’t be in surgery tomorrow, without having to read 3,000 words of me chatting my normal nonsense. Of course, I had to indulge in a little bit of nonsense – 1,600 words of it to be exact. It is disappointing that it was delayed, especially so last minute, but it can’t be helped. There are plenty of bumps in the cancer road; this is just another one of them. At least I get another week to run, weight train and eat as much as I physically can. I made the below white chocolate and raspberry cheesecake to help my weight gain last night, and it should definitely do that.

Thank you for all the lovely messages today and over the last few days – I’ve felt the support coming from so many places, and in so many different forms – from thoughtful hampers to heartfelt messages. They all mean the world to me and I really mean that. If this means that I get a whole second round of lovely messages and hampers next week, so be it. I am a true martyr, I know.

Me and My Brother Celebrate Finishing Our 5K – 07.07.22

Prescribing Pizza

The Road to Recovery

Lucy Begging for Creon

Another day, another appointment. Today it was with one of the dieticians at Manchester Royal Infirmary (MRI). It was extremely useful and I recommend to anyone who has a Hepato-Pancreato-Biliary (HPB) disease, such as Pancreatic Cancer, to get in touch with a dietician from their hospital as early on in the treatment process as possible. I feel like I have had drips of information from other parts of my treatment, but nothing like the level of help that I received today. A lot of the strategies and knowledge I have utilised so far have come from research that I have done myself, or through discussions with other cancer sufferers. There was a really useful call that I joined with Pancreatic Cancer UK which lay out the fundamentals of Creon and why I need to take it, but that was a group call; having a 1-2-1 with a dietician allows you to dig deeper into the specifics of your individual case. No two cases of cancer are exactly the same after all.

Not only did I learn more about diet whilst suffering from pancreatic cancer generally, but I also learned a lot about diet when approaching a major surgery. Want to know the good news or the bad news first? Let’s get the bad news out of the way first… My assumption that getting as healthy as possible before surgery, by eating healthy foods and losing some weight, was totally wrong. Solid stuff, Dan – typical know it all idiot deciding that you know everything about the world and jumping to conclusions.

It turns out that the average person who has had a Whipple procedure will lose about 10% of their body weight post-surgery. That means that you want to put on weight before surgery to try to minimise the impact that this has on your body. Even if you are not having a Whipple, you will still lose weight after a major surgery due to the abundance of drugs and suffering appetite during recovery. Of course, I am assuming that you are a healthy weight before surgery; if you are overweight, I don’t think the advice would be the same. Then again, I’m not sure – I’ve had a single meeting with a dietician, so you probably want to take everything I say with a pinch of salt (and a whole trough of full-fat cream if you are trying to pile on weight before your own Whipple procedure, like I now am).

The good news is that I now get to eat whatever I want for a few weeks! Success! I’ve been encouraged to give away absolutely none of the cakes I bake and to eat them all myself. I essentially have a doctors note telling me that I NEED to eat as many calories as possible. Not only that, but I was given a leaflet which instructs me to eat pizza, cheese and crackers and fatty snacks like scones. It’s unusual to find myself praising surgery or cancer, but I have to give them both a tip of the hat here. I’m not sure I’ve ever heard medical professionals advising me to eat pizza; it feels like a trap.

My goal is now to turn up to the surgery, step onto the scales, and see the nurse’s eyes widen as she records my weight. “Two seconds sir, I just need to check something with the doctors,” she says, trying to hide the panic in her face. I’d stand there with a smug smile smudged across my face. Next thing I see is the doctor running around the corner – “Hello Daniel. It appears your weight has doubled in 10 days – how on earth did you manage such a feat?” He’d ask. I’d proudly reply “I started to blend scones and cream together to drink alongside my 16″ pizzas… and that is just my breakfast routine.” They’d praise my ingenuity before informing me that they can no longer proceed with surgery as I have eaten myself out of qualification… you win some you lose some, I guess.

In my case, though, I have been warned that I am unlikely to have a Whipple procedure. Due to where my tumour is, at the head of the pancreas and surrounding a major artery, it is unlikely that it will be possible. The fact that the pancreas is already in a difficult place to operate on, alongside the fact that the tumour is in an awkward position on my awkward pancreas, means it is near impossible to operate on in a conventional way (conventional being the Whipple procedure, which is anything but conventional; it essentially involves removing various organs from the digestive tract before attaching it back together in a new order). Further to this, today I learned that having a tumour in the head of the pancreas is more damaging than having one in the tail as the head is where the main pancreatic activity is; it is the part of the organ which produces insulin, as well as the part which creates the enzymes that break down fats. A tumour in the head of the pancreas may also physically block the enzymes from getting into the stomach.

I’ve tried to explain it all a little better in the following paragraph, which I wrote over a long period of time and with great effort. I ensured I did plenty of research before writing it, and am confident that it clearly demonstrates the functions of the pancreas, and why having a tumour in the head of the pancreas is so damaging to your body. Not only does it clearly demonstrate these things, but it does so in a way that the layman can understand, like you and I. Whether the mainstream medical journals choose to praise me for achieving what they never could, is up to them; if it is too edgy then so be it, not everyone can take my raw and direct approach.

The reason that the Whipple procedure is so difficult is because your stupid pancreas is behind your stupid stomach, so it is already hard to operate on in stupid surgery. The pancreas produces stupid insulin to control your stupid blood-sugar levels in your stupid body, but it also creates stupid enzymes which help break down stupid fats in your stupid stomach. When you have a stupid tumour in the stupid head of the stupid pancreas, it disrupts all of this stupid activity because the stupid head of the stupid pancreas is the part which is stupidly responsible for producing and releasing these stupid enzymes and stupid insulin. That means that if you have a stupid tumour in the stupid head of your stupid pancreas then your stupid body starts struggling to supply the stupid enzymes to the stupid stomach which help it in breaking down the stupid fats. That is why stupid Creon, a stupid tablet that you have to take a stupid amount of with meals, is so stupidly necessary when you have a stupid tumour in the head of your stupid pancreas. Further to all of this, the individual who stupidly allowed a stupid tumour to grow in the head of the stupid pancreas has an increased chance of developing stupid diabetes because of the stupid pancreas not producing enough stupid insulin anymore. Capiche? Good. Glad I got that off my chest. Probably some of my best writing, if I may be so bold.

Seeing as a Whipple procedure is so unlikely in my case, you may be wondering why they are going to be slicing my entire abdomen open and spending hours operating on me. This is where Irreversible Electroporation (IRE), also known as NanoKnife, comes into play. I’m not sure why it has two names, which seem to introduce it as two quite different things, at least linguistically. Irreversible Electroportation makes it sound technical and cutting edge. NanoKnife makes it sound like the surgeon requests the extra small knife for this part of the procedure, before grasping it with the thumb and finger and delicately shaving the tumour away. Although the second is far more entertaining to imagine, I believe that the first far better describes the technique. A small electric shock is applied to the tumour, attempting to kill the cells. Its success in treating pancreatic cancer is little documented and not really understood, so we are in “uncharted waters,” to quote the surgeon in my first meeting with him. They do not commonly agree to do a major operation, only to use an experimental form of treatment with little documentation over whether it is likely to improve the situation or not. The treatment does seem to have good results with prostate cancer, though, so I really am positive that it is a good alternative if a Whipple cannot be done.

What I don’t like is the use of the word ‘Irreversible’. I can’t think of many medical contexts where you want to hear the word ‘irreversible’ used. Perhaps if there was a procedure called ‘Irreversible Cancer Killer’ which irreversibly killed all cancer cells in your body, I’d be on board. I haven’t heard of such a procedure, though. In this case, the word ‘irreversible’ just makes me think that I’ll be sat in a meeting in 5 months time, reviewing a new batch of scans of my pancreas. As the doctor explains to me that the electric shocks have irreversibly damaged my pancreas, I’ll sit with a confused look on my face. “I thought this was meant to help? Is there nothing you can do?” The doctor then smugly laughs and says to me, “I’m sorry Daniel, do you understand the definition of irreversible? The clue is really in the name.” I absolutely do not believe any of my oncologists would speak to me like this, but it is fun to have a bad guy in a story. I hope none of them read this blog… Who am I kidding, they’re far too busy to read this nonsense.

Anyway, this all relates to diet because a Whipple procedure takes a lot longer to recover from. The dietician told me that they make three new ‘joins’ in your digestive tract when doing a Whipple. I’m pretty sure I cringed when I heard her say the word ‘joins’ in relation to my digestive tract; it makes me view my abdomen as a kitchen sink, and the surgeon as a plumber rearranging the pipes. There’s something disturbing about it. I don’t like it. Those new joins make digesting food difficult for a long time, as the area is tender.

The nurse told me that a Whipple procedure would probably take 2 – 3 months recovery to even be eating normally again. NanoKnife would be considerably less than this. When I asked the anaesthetist yesterday how long I’d have to wait to find out which procedure they had done after waking up, she told me to check the time on my phone once I’m awake and sitting up. “If it’s 18:00 or later – they’ve done a Whipple.” I guess I’ll be waking up and grabbing my phone straight away, like the modern-day millennial I am. The nurses will probably think I’m Twitter-mad or something.

I know that in reality, it does not matter, though. The surgeons don’t know what they are doing yet; it is all about what they see when they open me up and what is deemed possible. Either way, I’ll wake up and will be forced to deal with the consequences. I need to let go of wanting to understand both scenarios and how awful they may be for me in terms of recovery. What I need to focus on is what the dietician told me to do before the surgery – do more strength training in the gym, keep up the running, and EAT EAT EAT! Alongside this, I need to keep good dental hygiene; this is to try and prevent myself from getting any chest infections or bugs during or after treatment. Apparently, most of these bugs are transmitted from your mouth, so the better your oral health, the less likely you are to develop any of these issues.

I also learned a little more about Creon use. The nurse seemed to mostly praise my use of Creon but did tell me a few useful things. Mainly that you should only be taking Creon when there is food in your stomach; taking any before or after is pointless. You should take your first one just after starting to eat, and your last one just before the last few mouthfuls. Alongside this, if you suffer from acid reflux, you need to have an anti-acid prescribed to you to ensure that the capsules travel through your body without the enzymes being damaged. I suffer from acid reflux badly, so this is a key problem for me. I have Omeprazole prescribed to help with this issue, but my GP in Alsager, my home town, keep saying that it is not on a repeat prescription, despite being on my medication list whenever I pick up prescriptions from there… very unusual. The dietician said she would send them a letter and resolve this issue. Another reason to see the dietician as early as possible – they get shit done (or mine did, at least)!

So, another day and another meeting at MRI. Today’s was good. I left it feeling positive. It is good to learn new things about managing your cancer better and I felt empowered by the whole process. Any directorate to eat everything you want is good in my book – I’m going to go baking mad and not feel any guilt for any of it, not that I felt that much guilt anyway. I just didn’t eat too much of it myself before. That’s about to change…

Lastly, as I finished writing this post, I saw a headline on my phone stating that Dame Deborah James has died at the age of 40. She was truly defiant in the face of her diagnosis, raising millions of pounds for charity and raising awareness, with courage, wit and openness. The image of a beautiful woman fighting a deadly cancer is powerful in itself, disbanding the common idea that cancer sufferers are older, weaker and frailer than the rest of society. It surprises people to learn that I have stage 3 pancreatic cancer, and although I am charmed by these remarks, they demonstrate the fact that many expect your cancer to be visible; they expect you to be worn down by it. Of course, there comes a point where the cancer will get the better of you if you cannot get rid of it, and you will change physically, as anyone does when they near their end. Life is not infinite, though. We fight to stay with our families, friends and loved ones, but we grow ever more aware that the fight may be in vain. Deborah chose to use her position for good, channelling tremendous energy into that fight, as well as the one against her cancer. I’m sure both fed into the other, making her an even stronger person. She’s an inspiration to me as I write these blog posts, and knowing that she was originally a cancer blogger makes her even more inspiring.

Rest in peace, Deborah. Your suffering is over now; I hope that your loved ones take some comfort in that fact. I know I’d want mine to.

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!

Twelve Rounds with Folfirinox

The Chemotherapy Diaries

Me and My Siblings – Alfie, Rebecca, Freddie, Josie, Greg, Me; I’m Apparently Doing My Best Hannibal Impression

It has been a few weeks since my twelfth and final session of the Folfirinox chemotherapy. That feels like a suitable enough period to reflect on the whole experience before finally drawing a line under it. Whether that line is temporary or not, I’m not sure. I believe I’m likely to need more chemotherapy in the future, but not sure whether it will be Folfirinox or something else. If it was, I wouldn’t feel too excited about it.

Despite all of the experience I now have in tolerating Folfirinox, I never got to a stage where I looked forward to the treatment days. No one looks forward to receiving chemotherapy, probably, but I seemed to get more and more resentful of it as the weeks went by. In the first session, I was extremely scared, and then in the middle sessions I was grateful, knowing it was necessary, which made it feel better. By the final third, I was sick of Folfirinox. Getting an infection in the final cycle and having to go to the hospital twice in one day was the final straw. Chemotherapy and I had officially fallen out. By baking the nurses a different cake every treatment day, I provided an aspect of the process that I did look forward to at least. It was a useful distraction in the two-week cycle.

I’d usually trial the bake a few times in the week before, to get it to a place where I was happy I understood how to bake it well, then make it for them on the Friday before treatment, which was always on the Saturday. Each time I walked onto the ward, I’d casually hand them the cake and make some comment about it, slightly negging myself to give the illusion of modesty. In my head I’d be screaming “I KNOW THAT CAKE IS GOOD AS I HAVE FED IT TO MY ENTIRE FAMILY, ALL OF MY FRIENDS AND MY MUM’S DOG WENT TO GREAT EFFORT TO STEAL THE FINAL THIRD OFF THE KITCHEN WORKTOP!!!!!” The final point doesn’t speak of the quality of the baking to be fair. You could take some rotting lasagne from 5 months ago and leave it on the kitchen side, and he would do everything in his power to steal it. It’s not about the food for him, it’s about the thrill.

All humour aside, it really wasn’t as bad as I thought it would be. That isn’t to say it was fine either. My expectations of chemotherapy were sky high, in a negative way. I expected it to be absolute hell. At times, I probably would have argued that it was hell. There was a particularly bad cycle where my mouth was so full of ulcers that I couldn’t hold my tongue in its natural place in my mouth. To make matters worse, I then got some of the worst diarrhoea that I’d experienced up until that point…in my life. The combination of those things absolutely exhausted me. I remember laying in my bed, feeling more uncomfortable in my own skin than I had ever been. It will probably remain the most vivid memory I have of the entire chemotherapy experience. During that time, I told Anna that I “couldn’t keep doing this.” I wasn’t referring to the initial twelve cycles that I was engaged in, but the notion that I may have to repeat chemotherapy over and over again.

My oncologist at The Christie told me that chemotherapy may be used several times in my case, as it may take several different ‘techniques’ to get my tumour in a place that it can be operated on. The issue is that pancreatic cancer is extremely aggressive, meaning that it spreads around the body quickly relative to other cancers. During the break from chemotherapy, when other techniques are being applied, it gives the cancer an opportunity to spread ‘micro-cancers’ around the body via the bloodstream, increasing the likelihood of secondary tumours (or metastasis) growing in other locations. Chemotherapy helps to kill these micro-cancers, stopping them from getting around the body and taking hold elsewhere.

I’ve read more on how cancerous tumours operate recently in the Anticancer book and it is incredibly interesting. Apparently, the primary tumour secretes a chemical called angiostatin. That chemical stops any metastasis in the body from becoming the primary tumour; even cancer is an egomaniac, obsessed with maintaining its heightened social status among its peers. It isn’t entirely different from some of us humans. This process is responsible for the development of other tumours post-surgery. The primary tumour is removed in surgery, ‘curing’ the individual. Microcancers may remain in the blood, though, and may even have a footing in other sites in the body. Without the primary tumour secreting angiostatin, the other sites are unabated and can become the primary site of a new cancer. I believe this to be true, if I understood it all properly, which I probably didn’t. It is extremely interesting whether I understood it all properly or not – I can see why it is of interest to people who work in the medical profession. The book was also published in 2008 so who knows if new information has come out, or new techniques for stopping this from occurring have been established. I assume the use of mop-up chemotherapy helps to stop this happening in many cases.

A quick Google of Folrifinox tells you all you need to know about it as a treatment. Pancreatic Cancer Action Network’s website states that it is ‘known to be a particularly powerful chemotherapy regimen and can cause severe side effects in patients’. It goes on to talk about a clinical trial of the chemotherapy, staying that ‘The patients in this trial received a modified version of FOLFIRINOX, which was intended to lessen some of the side effects. Still, more than 75 percent of patients who received adjuvant mFOLFIRINOX [modified Folfiriniox] in the clinical trial experienced severe side effects, although the investigator indicated that most of these reactions occurred before the dosage was modified’. To paraphrase the above: Folfirinox is really fucking strong and if you are put on it you are VERY LIKELY to get gross side effects, like pooing blood and developing sores the size of islands on your tongue. To put it in terms that the average person may relate to more: Folfirinox is like drinking 6 pints of a beer that you hadn’t heard of, only to realise it is actually 46% and not 4.6%, but noticing this too late to do anything about what is about to happen to you. The key difference? Drinking beer probably won’t save your life; Folfirinox just might, if you’re lucky. I love the way that they state ‘more than 75 percent of patients…experienced severe side effects, although the investigator indicated that most of these reactions occurred before the dose was modified’, as if this is meant to make you feel good about the treatment. “It’s ok, only OVER THREE QUARTERS of the participants experienced SEVERE side effects – but you’ll probably be alright. Good luck with your treatment, sir, we can always reduce it if we need to but it might not work as well. Why have you gone so white? And why is vomit coming out of your eyes? Have you started treatment already? That’s a common side effect of it if so,” I imagine the oncologist saying, as he welcomed the first patient for treatment after Folfirinox was approved for use.

In my experience, the most typical reaction from doctors/nurses/anyone who understands anything about chemotherapy when you say you’re on Folfirinox ranges from despair to awestruck. It is worth noting that these are the extremes of reactions and most don’t fall into these categories (the former is a total exaggeration; the latter is likely to be my own ego speaking and not based on a reaction from any walking, talking, breathing human). “That’s very toxic stuff,” or “You look amazing!” are the most common things said in response. For that reason, it is mandatory to be as smug as possible whilst being treated with Folfirinox; you may as well enjoy the very small list of benefits that come with being on it. My recommended responses are as follows:

Modest: “It isn’t that bad once you learn your cycle”

Coy: “Yeah, it’s been a little tough”

Forcing Sympathy: “It’s been incredibly difficult”

Brave: “I’m just keeping my head high and fighting through it”

Demanding Sympathy: “People who haven’t been on it just don’t understand”

Pushing It Too Far: “It’s the hardest thing that any individual has ever done, EVER”

I’m sure there are other responses outside of the above, but they’re a good starting point if you’re new to Folfirinox. Just play around with the wording and make it your own. If you want extra sympathy, really lean into those nasty symptoms – of which there are many.

For me, the worst symptoms (as mentioned previously) were mouth ulcers, diarrhoea and fatigue. Nausea was a problem on treatment day, and sometimes for a few days after, but generally it went quite quickly for me. The anti-nausea medication that the hospital give you is very effective. The same applies for the anti-diarrhoea that you are given. For some reason I thought I was doing a good thing by trying to not use the anti-diarrhoea until I decided that things were going too far. By about cycle 8 I had dropped this ‘heroic’ stance and realised that just taking the medication as soon as you had loose stools was far better. You’re only spiting yourself if you try to hold out, even if you think it is for good reason (mine was that I was “taking enough tablets”). The longer the diarrhoea lasts, the more nutrients you lose. It also results in extreme exhaustion. It just isn’t worth it.

For mouth ulcers, I really didn’t find a way to avoid them completely. I had to learn how to treat them better, which I covered in a previous post. Since writing this, I also started to swirl my mouth out with Milk of Magnesium; I’m not sure if it works well, but I was willing to try anything. The key one for me was applying the Iglu product early on. When I didn’t, the ulcers would get more irritated during eating and it would make them far more painful. In the last cycle, I was eating a sandwich when I realised there was red stuff all over the bread after I had taken a bite. I looked in the mirror and realised that the seeds from the bread had torn the ulcers apart whilst I was chewing. My teeth were all stained red with blood. You get so used to having pain in your mouth that it becomes difficult to know when something has worsened. The Iglu helps to prevent issues like this, so long as you consistently apply it. It doesn’t taste the best and it gets stuck to your teeth, but it’s a small price to pay if they heal quicker and are less painful.

Another, and more generic symptom of chemotherapy, is neuropathy. I say it is generic as it is not specific to Folfirinox, although I guess none of these symptoms only apply to Folfirinox but whatever, I stand by what I’ve written. It is where the nerve endings are damaged and you lose feeling or have a strange feeling of pins and needles. I believe it only occurs in the extremities of your body. It can take months to recover from, even after finishing treatment. Sometimes it never goes away and the damage is permanent. I have it in the end of my toes and fingers. The oncologist said that because it happened quite late in my cycle, he thinks I should recover fully, but it is currently worse than ever. I have a tingle as if I’ve slept on them all night, and woken up with hardly any feeling. It really does feel like the blood flow is being restricted sometimes. I’ve found the problems to vary between having neuropathy in my fingers vs my toes.

Having little feeling in my toes is annoying whilst running as I kick the floor a lot more regularly. My slippers also fall off when I’m walking up the stairs; I used to have to bend my toes a bit to keep them on as I climbed the stairs. They are slip-ons so fit quite loosely. Currently, I can’t tell if I am bending my toes enough whilst going upstairs, so they always fall off my feet. The biggest frustration with my fingers is completing tasks that require a level of feeling in your fingertips. For example, doing the buttons up on a shirt is really hard now. They’re small things that are impacted, but it isn’t a small thing to think that you may never go back to feeling ‘normal’ in those areas. It sounds likely that I will, but it has only worsened so far. Hopefully they will gradually get better, as more time passes from finishing treatment.

The headline of the treatment was that it reduced my tumour size from 3.2 to 2.1. All of this reduction came in the first 7 sessions. As the oncologist relayed this information to me during the mid-treatment scan result meeting, I had to scratch my head. I’d never been told how big my tumour was before. The figures didn’t make sense to me. “Millimetres are surely too small…it can’t be in meters, though. Does she mean centimetres?” My brain was trying to figure out how something so small could cause such a problem. After a few seconds, I asked “2.1 centimetres is that?” She confirmed. My naive non-medical brain was screaming “2.1 centimetres? Are these people serious? It’s absolutely tiny! JUST GET IT OUT OF ME!!” I knew it wasn’t that easy, but it really should be. 2.1cm is pathetic. If it ends up killing me, I’m going to be more indignant than sad on my deathbed. “2.1cm… that’s probably smaller than the circumference of a polo mint,” I’d say with my final breath. I wouldn’t regret it either.

There wasn’t any better news at the final scan. I’d already had my good news apparently. We went into the meeting hoping that the oncologist would tell us that surgery was now a foregone conclusion, but it wasn’t to be. “It is still not clear from the scan whether the tumour can be removed or not. The case is being passed to the team of surgeons to review and decide what they want to do next,” the oncologist said. He was living up to his opening promise of “not having any bad news” for me, but only just. ‘Not bad news’ feels like a pretty low bar to set as a standard. I might start measuring everything I do in life against it. “How was your week, Dan?” Someone may ask me in a few months. “It was not quite bad,” I’d reply with a half-smile to emphasise the uncertainty. I’m sure that response would be welcomed with an absent glance as they got their phone out and chose to read about whatever awful thing was going on in the world as an alternative to hearing about my ‘not quite bad’ week. At least the news commits to being about negative things all the time. They’d probably start ignoring me after a while – it’s pretty wearing dealing with that level of indifference.

I have to give credit to Folfirinox here. It did manage to shrink my tumour by around a third. If someone had offered me that outcome five minutes after being diagnosed in the hospital, I’d have cried myself dry. It’s good to remind myself of that when I start to feel disappointed in it. Ending the treatment on a high would have been great, with another resounding success in terms of further shrinkage, but it still has done a good job. My tumour markers also came right down, which is a very positive sign. Although it is a gruelling treatment regime, it clearly does work well. If the chemotherapy was only in clinical trials in 2018, I’m sure the improvements in statistics haven’t started being reflected yet in terms of survival rates etc. That makes me feel somewhat better about how bleak the statistics are, even if I don’t know it to be true.

To finish this, I will be more serious. If you are currently on Folfirinox, or any other chemotherapy, I want to say that you really are amazing. I’ve only got experience of the treatment I was on, but it was tough. Really tough at times. I know I have said in this post that it wasn’t as bad blah blah, but your standard for ‘bad’ quickly changes when you are diagnosed with cancer. You become used to living with a level of pain, uncertainty and discomfort that no one should have to face in their mortal lives. Definitely not at 29, though I am nowhere near the youngest person I saw in hospital receiving treatment. That is really hard to accept – but cancer doesn’t care whether you accept it, whether it is moral and who it is growing inside of. It’s almost pointless to evaluate it in such terms, but it’s impossible to not.

I’ve heard stories of people having far worse times with chemotherapy than I did, and I’ve seen plenty of people in hospital on other types of chemotherapy that seem in a bad way. Although it is tough, it’s one of the best ways that we currently have of fighting cancer. Similar to exercise – you have to push through some pain to improve your final results. Keeping yourself physically active, mentally well and having a relatively good diet was essential in my experience. It may feel like a lot to get out of the house every day, and some you won’t be able to, but it will really help you out. Chemotherapy may be tough, but you have a plan to follow and objectives to hit. Every treatment day you find yourself back at that hospital is another one ticked off the programme. It doesn’t last forever and you feel great when it’s over (and perhaps a little lost too, but that’s Ok). I know that for a fact – I’m currently feeling better than I have in months, and I’m hoping I’ll only be getting better with every day that passes until the next treatment phase begins.

Infections Ahoy: 2 Hospital Visits in 24 Hours

The Chemotherapy Diaries

Yestrerday morning, I was admitted to the hospital with a suspected infection. My temperature was 38.2. The ‘healthy’ range is about 36.1 – 37.2, I believe. If it is above 37.5, that is when the chemotherapy hotline become particularly worried by it. Who knew there could be another twist in the chemotherapy tale? It’s a good job I haven’t made any lofty claims recently about Completing Chemotherapy – that would make me look pretty stupid.

I’ve felt extremely tired these past few days, but that doesn’t raise an eyebrow in week one of the chemotherapy cycle. Randomly regaining consciousness on the sofa despite having no recollection of falling asleep is part of the first week’s rituals. Sure, I’ve been getting the usual attacks of stomach pain, digestion pain and general abdominal pain, especially during the night. Why would that be any more concerning than usual, though? You wouldn’t put a polar bear in a Tunisian zoo and then ponder over whether it is too warm. You know it’s too warm, you just want more people to visit your zoo. I actually did see a polar bear in a Tunisian zoo when I was 18. The poor thing was laying on the concrete in the scorching sun; it looked completely defeated. It was the moment I swore myself off zoos.

I got on with things as normal. Tuesday night’s sleep was broken but not too bad; in the morning I felt a little more exhausted despite sleeping for twelve hours. Still not too concerning. Wednesday I spent lounging around the house, slowly mustering the effort together to get out into the big bad world and walk Lucy the dog. Anna and I finally managed it at lunchtime. We were out for about an hour and the sun decided to join us. The rest of the day was a blur really – I can’t remember what else I did. Fell asleep more, read my book and lounged about, probably. Wednesday night was when the serious fatigue kicked in again. Not totally unusual, but I didn’t experience it like this often.

Walking Lucy – Picking Up a Gift from a Family Friend

I was struggling to stay awake on the sofa from about 21:00. Before this I was fighting the tiredness, but after 21:00 I simply couldn’t stay awake. The abdominal pain was also worsening which is unusual for the early evening. It usually only happens in the middle of the night and in the morning. I went to bed early and had a strange night, drifting in and out of sleep and feeling particularly bad. There isn’t a better way to put it really. Just bad. By the time it was morning, I had a high temperature and my skin was boiling hot. A high temperature is the clearest (and sometimes only) sign that you have an infection. Infections are extremely dangerous whilst on chemotherapy, and can be fatal if they are not dealt with quickly. Your body is busy processing the chemotherapy drugs, meaning that the load on your immune system is heightened. So, things which may be routine for your immune system in day to day life become big problems whilst on chemotherapy.

That is why your thermometer is your best friend whilst on treatment, and at first I hung out with mine regularly. As I settled into treatment, though, I started thinking I knew it all. I stopped really checking my temperature, deciding that chemotherapy was easy and that my body was an impenetrable fortress. The road to hell is paved with good intentions. I thought it was in everyone’s interests for me to not check my temperature – I save myself an entire 10 seconds every morning, no one worries about me having an infection and I don’t have to bother the staff on the chemotherapy hotline, who have older and more vulnerable patients to attend to. When I eventually conceded that I felt a little hot and Anna told me that my chest was ‘boiling’, I grabbed the thermometer. I put it under my tongue and waited for the beep. Beep – 38. Fuck. As stated earlier, anything over 37.5 is moving into abnormal. 38 is the highest I’ve ever seen my temperature go. The reality of the situation set in; I’m going to have to call the hotline in my final cycle, aren’t I?

It is amazing how quickly self-preservation kicks in when you are in these stressful situations. As I sat on hold to the hotline, I tempered my thoughts on whether what I was doing was appropriate or not. Despite reading online that a temperature of 38 on chemotherapy unequivocally requires the attention of the oncologist, and fast, I kept checking my temperature to see if it was a false reading. I got a few 37.8’s, a 37.9, a few more 38’s. All of a sudden, I got a 37.3. Phew, it’s normal again, I said to myself. Just before I managed to hang up, a woman picked up and asked for my hospital number. Damnit, they got me. She asked about my temperature and I explained that it has been a little bit all over the show. “What is the highest temperature you have recorded?” She asked. “Well, the highest is 38 but I’ve had quite a few 37.8’s…” she cut me off mid-sentence. “You need to come in, I’m reserving you a bed now. Can someone drive you and can you get here in the next hour?” I felt like a deer in the headlights. I resented the thermometer for doing this to me; that’s the last time I’m trusting you.

I knew something was wrong, though. Even now, 7 months after a cancer diagnosis, I still try to avoid doing anything which may disrupt the idea that everything is going well. Accepting that I have a high temperature and possibly an infection means that something needs to be done about those things. That something may result in more uncomfortable truths coming out about the cancer, treatment, or who knows what else. You want to curl up in a ball and wait it out instead. It’ll be fine. Probably. Unfortunately, that type of avoidant strategy won’t do you any favours in the world of your health. Putting off appointments, ignoring symptoms and pretending that you feel Ok, all just lead to bigger problems in the end. Even if it doesn’t – getting checked out will settle that voice in your head which tells you something is wrong in those quieter moments. You may have to do a few uncomfortable things in the process, but life is full of uncomfortable moments. It happened to me for over a year when I was trying to get my abdominal pain diagnosed. I never thought it would actually be cancer, no matter how many jokes I made about it being so. Those jokes seem in bad taste now, but that is clearly one way that I dealt with the uncertainty of not knowing what was causing the pain at the time.

The operator had told me to bring an overnight bag and set off straight away. I got a few things together and pulled myself out of bed. My head was spinning and it felt like someone had lit a fire inside it. I felt like a zombie as I walked, struggling to speak coherently and feeling fascinated at how the human body copes with the world. So, when you have an infection your brain heats up does it? Perfect.

Anna dropped me outside the front of the hospital. I had to go to a department I’d never been to before – Department 22. It wasn’t the ideal time for an adventure. If anything, the zombie description was only becoming more accurate as the day dragged on. Adequately stringing together sentences was becoming a unsurmountable task. As I walked the corridors of the hospital trying to follow the signs for Department 22, I felt my eyelids refusing to blink as fast as I wanted them to, and my feet dragging more than usual. It didn’t feel like I was in control of any of it. I made it to the right place and asked at a reception desk where the ward was – she told me to use the lift and go to the top floor. I turned around and walked in the completely opposite direction to the lifts. She called out to me and walked around the desk, putting her hand on my arm and saying she’d take me there. She smiled at me. Sweet pity was looking me dead in the face.

Once I reached the ward, I was taken into a private room immediately by two nurses. Both were extremely nice, as is standard at The Christie. Everyone who works there is always so lovely. One of them checked my blood pressure and temperature. My temperature was now at 38.2. My heart rate was at 201, which was far more concerning, but the nurse didn’t tell me that yet. She smiled and said, “I’ll be back in one minute, Daniel.” I smiled and said Ok. I’m sure she had noticed the vacant tone of my voice and the rolling of my eyes; I was actually feeling quite ill now. She came back with another device and put it on my finger – “Ok, good. The last device said your heart rate was 201 which would be very concerning. This one says it is 131. It’s still high but it’s much more manageable. I’m sure we’re making you extra nervous, too.” She wasn’t wrong. There was a lot of equipment in the room and I was suspicious of all of it. What are they going to do to me?

Drip Drip Drip

They put a needle into my port and extracted a few tubes of blood. The nurse then informed me that she also needed to take blood from my arm, as a means of trying to locate where the infection is. I knew this was going to end badly, but I also knew that there was no way of getting out of it. I didn’t say anything. She put the needle in my arm and I watched her pulling blood into a syringe. Now, I say I knew this was going to go badly because I absolutely hate doing blood tests at the best of times. My body does actually respond quite strangely when a larger amount of blood is taken, though, which is why I cannot donate blood. Also, they don’t usually extract blood from your vein using a syringe, and that in itself was making me feel queasy. Usually they use small plastic containers that they screw onto the end of the needle.

I’d seen that she had already taken quite a bit of blood from the port, and I was now watching her pulling it out of my arm. Couple that with the fact that my head was spinning and I was already feeling sick, and you get a recipe for disaster. At some point whilst she was taking the blood, she realised my arm had gone floppy. “Don’t pass out on me, Dan,” she said, “we’re nearly done.” The room was spinning and I was sweating profusely. Even my eyes were probably sweating. She finished, detached the syringe from the needle, pulled the needle out then lay me down on the bed. I couldn’t hear properly – like that part in a war film where the protagonist looks around in slow motion and sees all the destruction around them with an eerie buzz. My hearing was going and I had to shut my eyes, breathing heavy and focusing on staying awake. Then I came out with a rather unusual assessment of the situation – “I feel like someone has put a tin of beans over each ear.” I’m not sure where it came from but the nurse burst out laughing and said “that’s a new one”. I only realised how embarrassing it was once I was feeling better about 10 minutes later. “Where did that comment about tins of beans come from?” I said as she came back in to attach me to a drip. It needed to be addressed now that I was more conscious. What would a psychologist say about that? When my defences were down and my brain was at it’s most vulnerable, it chose to bring up cans of baked beans. Interesting. I even specified that the tins were used for beans; surely that detail would be irrelevant.

Anna’s Interpretation of the Tin Incident

Once I was feeling better, the nurse said to me “You probably think we’re vampires taking all of this blood from you!” Has she been reading the blog? Or can she read minds? Is that something that vampires can do? Now I have to watch what I say AND think around these bloodsuckers. What a disaster.

The next person to see me was the on shift GP. Now, I know I wasn’t completely with it, but I am 99% certain that this woman was an angel. She had the softest Irish accent I’ve ever heard and always looked deeply into your eyes as she spoke to you. Everything she said, she meant, and you felt it. I tried to focus on her questions, but I couldn’t help getting lost in her aura. Some people are so predisposed to just be be…nice. It can knock you back sometimes. She can’t always be like this, surely. Then I remembered that she become a doctor, arguably one of the most caring careers a person can pursue. It must be exhausting caring about every single person you come into contact with if you are a doctor, though. How on earth does she do it? Maybe I’m just drinking the kool aid and moments after I left the ward, she turned to the others and said “Hah – did you see how limp that wimp went when we took his blood? What a loser!” She definitely didn’t, but it makes me feel better to lie to myself that her angelical nature was a facade and that she was actually a horrible person. If I didn’t believe that, she’d make me want to become a better person. That takes time and effort. No thank you.

Dr. Angel listened to my chest, tapped around my back with her hands, inspected my body and asked me to breath deeply for her. She then sat next to me and chatted to me about all of the issues I’ve had throughout treatment, to try and establish any trends which could help identify the problem. I told her about the mouth ulcers. She shone a torch in my mouth to take a look. “Aw it looks so sore – you have signs of oral thrush. Have you been treated for it before?” I had, about 3 cycles prior. She said that she’d give me some tablets to help get rid of it. We then went down the dignified topic of diarrhoea. Talking about how many times you see blood in your poo in a typical cycle should be uncomfortable, especially when you’re talking to a real-life angel. Fortunately, it’s a topic which seems to come up every time you see an oncologist about anything. “My feet are constantly cold and numb,” you say to your oncologist one day. “That sounds awful, Daniel. Please rate how loose your stools are out of 10,” they reply, without a second of hesitation.

The doctor told me that I’m probably fighting some form of infection in the bowels, alongside some other issues like the oral thrush. She told me that they’d prescribe me antibiotics and send me on my way. I breathed a sigh of relief. The anti-biotics that the nurses had pushed directly into my veins had kicked in and I was feeling more like myself.

Dr. Angel told me that I needed to do an X-Ray of my chest just to make sure they can’t see anything worrying. The nurse walked in a few minutes later with a wheelchair. “C’mon – you’re going to help me get to my steps goal today.” This was only the second time I’d been wheeled through a hospital on a wheelchair. Knowing I was fully capable of walking, I kept offering to just walk, but she told me that she isn’t allowed to let me. There is something severley immasculating about being wheeled around when you don’t need to, as if you are conceding to some form of weakness that you insist does not exist. I decided to just sit back and enjoy the ride. It was like a fairground round and I was going into the staff only parts of the hospital. Exciting.

The scan only took a few minutes. I was then taken back up to the room. Dr. Angel came in a few minutes later and confirmed that the scan was clear. She actually described the X-Ray as ‘beautiful’. She’s definitely an angel – nothing else has the audacity to use that word in that context. Finally, I had the all clear to go home. I thought that was it for my temperature shannanigans for one day. Unfortunately, I was wrong.

After I got home, I showered, cleaned my teeth and got into bed. The rest of the afternoon was spent drifting in and out of sleep, sweating a lot and basking in the sunshine which was obnoxiously beeming into the bedroom through the window. My body was cold and hot at the same time. Perhaps it wasn’t the best idea to lay in direct sunlight for hours, especialy with the ginger genes that exist in my family (two of my siblings are ‘Strawberry Blonde’). The sun makes light work of my pasty skin. Anna and I had booked to go out to a local restaurant that evening with my parents. They were adamont that we should cancel, but I told them we should go. Walking a few hundred meters before sitting in a restaurant seemed like an easier task in my head; I couldn’t just stay in all night. I got some soup and ate it slowly. About two seonds into the main course arriving, I knew I’d made a mistake. I made a pitiful attempt at eating enough of it that it didn’t seem rude to the kitchen, then sat there trying not to fall asleep. Anna and I ended up leaving early because I was feeling too bad. When I got home, I lay in bed. Somehow, I was feeling even worse than earlier. After about 30 minutes of this, I reluctantly grabbed the thermometer and put it under my tongue. Please don’t be high. Beep. 39.1. Eugh.

I took my temperature over and over again, each time returning results around 39. It was even higher than earlier – surely that isn’t good. My mum, Anna and I then desperately started looking for the other thermometer. It’s broken, surely… Of course, it wasn’t broken. My eyes were actually burning and Anna said that heat was radiating off my body. I called the hotline. Once they picked up, I protested that it was probably nothing but that I wanted to double-check. As soon as I gave my temperature, the operator seemed concerned. “That’s quite a lot higher than earlier. I think you need to come in again.” It was around 21:30 now. Once I hung up, I lay idle on the bed for a while, wishing it would all just stop. It didn’t. We got in the car and set off, arriving at around 22:30.

The hospital was empty, as expected. Anna walked with me to Department 22. We went up in the lift together, before she was asked to leave the hospital. A familiar procedure started – blood pressure, heart rate, insert a line into my port. The nurse put her finger on my wrist to check my pulse. “You’re boiling sweety,” she said, before sticking the thermometer in my ear. “Wow, you’re temperature is 39.2. Let me get the oncologist quickly.” A youngish man, perhaps mid 30’s, walked into the shared ward and pulled the curtains around us. There were two other men on the ward. Both of them were sleeping. The room was punctuated by the occassional groan, and the sounds of restless sleep. Machines beeped, nurses giggled down the coridor and I sat wollowing in self-pity.

No surprises here, but the oncologist was a very nice guy. He wasn’t angel material, but he wasn’t far off. I think you just have to be an amazing person to dedicate yourself to the oncology profession. It is so brutal; the average person doesn’t want to be in the coal face of pain and misery every day. These people recognise the other side of that equation – how incredibly necessary their role is in fighting back against cancer, and how the people suffering from it are just crying out for a reassuring smile. Even when that smile is behind a mask. They make a huge difference, whether the story ends in tragedy or not.

He gave me two options. Option one: put me on antibiotics and monitor me overnight at the hospital. It was their preferred option because of my temperature, but he appreciated that it may not be mine. Option two: they take blood samples from me and confirm that they are ‘healthy’, meaning that this is just my body fighting the infection, and that there aren’t any indicators that my health is deteriorating. After explaining both, he smiled and said “you want option two, don’t you?” “Fuck yes,” I responded. It was probably a bit inapprorpiate but I think he appreciated the timing. He reitorated that I need to ring up if anything worsens and that they are only letting me go because I’d already been given a thorough inspection earlier, with anti-biotics issued. He said that he suspected my bloods would be fine, but also reitorated that they need to be clear or I’d have to stay.

The nurse came back in and took my bloods. She asked me if I wanted anything to drink. I treated myself to an apple juice and settled in, watching Youtube on my phone in between falling asleep. About an hour and a quarter later and the oncologist was back. “You’re good to go – the bloods are fine. You’re still fighting an infection so you are likely to have a high temperature for a few days, but we aren’t worried about it based on your vitals and the blood results.” I breathed a sigh of relief. Anna and my mum had been waiting in the car the entire time; Anna had spent as much time as I had at the hospital that day, without being allowed to be part of any of the action. It was probably worse for her, really.

Apple Head on the Ward, Waiting for the Blood Results

I made my way out of the deserted hospital, exchanging pleasantries with a random cleaner in one of the foyers. Part of me expected to see a cohort of blood nurses sitting in one of the offices as I walked past, downing pints of blood and cackling. They must have a private room in the back as I never saw them. It was so good to know that I’d be sleeping in my own bed. We got back at about 00:30 and all retreated to bed.

Any hope of cycle 12 being easy had been dashed. Luckily, I seem to be following a similar blueprint to a guy who has beat this bastard cancer. The incredible Nigel had to spend an evening in the hospital because of an infection when he was on the same chemotherapy as me. He is now 3 years clear of pancreatic cancer, something very few people can say, especially those who were diagnosed in their 70’s. Having one infection that gets you admitted to the hospital seems to be part of the winning formula for beating pancreatic cancer, so I’m choosing to take the positive from the situation. I actually got admitted twice, so I’m twice as likely to beat it now. Logic. Nigel’s daughter told me that he claimed the hospital’s thermometer was broken when they checked his temperature…it’s no wonder he beat this cancer with that sort of self-idealisation. How could my temperature be that high? I’m Nigel, don’t you know. I don’t get ill.

I’m hoping that the rest of the cycle is far less eventful. Hoping does little to change these situations, though. Better to just roll with the punches and see what happens, dealing with it when (and if) it does. Besides, the hospital’s thermometer was broken. I didn’t even have a temperature.