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).
‘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.
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.
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.
How long does it take to put on weight? Is 8 days enough time to put on considerable weight, or is there a significant delay between eating the fatty foods and putting on the body fat? These are the questions bouncing around my head as I stand on the scales this Thursday morning to see that I have lost 2 kgs since yesterday morning. Apparently, the 5 flapjacks, 3 slices of banana bread, full-fat milk and peanut butter protein shake, abundant cheese on toast lunch and peanut noodle dinner just didn’t cut it. I thought I’d had a good day of putting on weight yesterday. The scales disagreed.
My weight started at 75.45kg as I checked it on Wednesday morning. It was time to start bulking before the big operation, just as the dietician had ordered. The challenge was clear – eat as much as you can, as often as you can. If you look at the packet and see a red colour in the ‘saturated fat’ box, eat twice as much of it. Fruit is fine, just dip it in butter first. Strawberries and cream? Throw those strawberries in the bin and double the cream. Double the double cream. Do they do quadruple cream? Who cares, make your own by combining two tubs of double cream! Put down that banana and eat more chocolate. Why are you crying? Most people would kill to be in this position.
I have major surgery on July 8th. At my pre-surgery appointment with the dietician, she advised me to indulge in all the foods I’d usually limit in preparation for the surgery. I will be losing a lot of body weight afterwards, so the additional weight will help me over the next few weeks. She also advised me to start strength training in addition to my running as it would help me recover faster. The resulting equation makes me think of those videos that you see of athletes’ diets, where they need to take on 8,000 calories a day to maintain their training schedule. The most infamous one I can think of is the US swimmer Michael Phelps diet where he was trying to take on 8,000 to 10,000 a day during training. I’m not comparing myself to him of course, I could never eat that many calories in one day (apparently); I could easily match his world-record swimming times, though.
This morning, as I prepared myself to step onto those scales again, I had a satisfying feeling running through my body. “I ate so many buttery things yesterday,” I thought to myself, “I’m going to weigh so much today.” As I took my place on my pedestal, ready to accept my ‘greatest gainer’ award, I watched the numbers bounce around. Eventually they settled on a number that I wasn’t expecting. 73.3kg. I’d lost 2kgs.. Well, damn it. I’m sure your weight does vary a lot based on how much water you have drank, how much food you are processing at the time etc, but this still felt disappointing. I’ve never felt so disappointed at losing weight; I’ve rarely felt anything about weight. I’ve never weighed myself consistently enough to care.
The truth is, I’ve never paid much attention to my weight. I’ve always exercised enough that it hasn’t been a problem. My family also seem to benefit from good metabolisms, as far as I can tell. We’re all quite skinny, but everyone does also exercise a good amount. We were brought up seeing my parents being active. It’s always been the way with us – you need to keep fit enough that you can eat an obscene amount of cake and feel absolved in doing so. I watch my dad do it every day, although he has slowed down on the exercise now he is in his mid 60s; the cake eating is going as well as ever.
When I was 16, exercise was all about weight training. The only cardiovascular exercise I did was when playing squash. This continued until I was about 22. I then started to commit myself more to running, cycling and other, more cardiovascular-focused activities. The dopamine hit was getting addictive and I didn’t care so much about having a muscular physique. My main objective was to look good when I was weight training, but I was realising that feeling good was a much more attractive prospect. Cardio made me feel much better than weight training. I clung on to the weight training for another few years, not wanting to lose too much of my muscle mass after so many years of hard work, before throwing in the towel completely when I entered my first marathon. Run run run – that was my new life. Harnessing my inner Forrest Gump, I decided that the running life was for me.
It was a few years later, in 2019, that I started to weight train again. I was living in Philadelphia in an apartment paid for by the company. There was a gym in the building. It wasn’t amazing, but it was right on my doorstep. Closer, actually. It was in my basement, just an elevator ride away. I felt like my running was stagnating and I couldn’t figure out why. The training was brutal – 6 days a week, 45 miles or more total distance – but I always did it. After doing some research online, I’d read that strength training is an essential part in improving your running. That convinced me to figure out a new strength routine and make room for it in my busy workout schedule. I’d get up at 6am to go to the gym, or I’d finish my run in the basement. It was nice to be back to the weight training with a different purpose beyond getting ‘buff’. I was using lower weights and doing more body-balance type exercises.
When covid struck and I was brought back from the US, I didn’t bother joining a gym. They weren’t open for a few months because of the lockdowns anyway. Running was still a staple in my schedule, as I was now training for the 100-mile GB ultra, which I was due to do with my brother, Greg. I randomly ran a marathon one Saturday as part of my training. I felt like I was fitter than ever. All that running took its toll, though, and I sustained a knee injury. After seeing a physio, I discovered that it was caused by an imbalance in hip strength. The strength training was back in the fold and I had a plan drawn up by the physio of home-friendly workouts. One of the exercises required me to fill a backpack with books and do one-legged squats… only in the pandemic would you find me filling a bag with books and using the lounge furniture as an exercise bench. What a novel time that was!
It was around this time that I discovered yoga. Once my injury was better, I relied on yoga to keep my muscles in good shape. The strength training was gone, but the yoga improved flexibility and ensured that blood was flowing to those tight places. I was always finding excuses to get rid of the strength training again – it felt like old ground to me and I had done nothing but that for years when I was younger. Yoga and running were now my staples and remained so until I fell ill, ceasing all physical activity until a few cycles into chemotherapy, when I realised that I could still run. It’s been tough but I’ve managed to achieve some consistency these days. Towards the end of chemotherapy, it got very difficult, but I do around 3 or 4 days running a week now, even if it is mostly 5Ks.
On Wednesday, I signed up for the gym across from my parent’s house. It is a small gym, located above a few shops and accessible by a door around the side of them. You make your way up a staircase to access the gym. It is actually the first gym I ever went to when I was about 14. It has changed hands now, has been refurbished and is open 24 hours a day, accessible with a fob. As I walked around it on Wednesday after being inducted, it felt strange. I’d spent so much time in there when I was younger. I remember watching a particular developed guy that was in my year at school doing the max weight on the chest press machine when I was younger, and wondering how on earth he could do such a thing. It was amazing to me. There were about 8 people standing around him watching him do it. It was impressive for a 14-year-old. My dad used to participate in a competition on the rowing machines – who could row 2500m the fastest. He was top of the leaderboard, despite some of the other competitors being nearly half his age. It made him proud. I’d done it a few times with him, but it wasn’t for me.
After going to the gym on Wednesday, I then went running with my friend, Finch. I only did 5K. My legs felt like jelly for the initial 10 minutes after doing squats for the first time in 2 years. Perhaps that is why my weight was so low this morning – your muscles have to break down before they build back stronger, right?
Maybe I should be lowering the amount of exercise I am doing. It feels so unnatural to me to just cram calories and not balance it out with more work, though. I’ve never been a fan of eating for the sake of eating. I know that this is different as I have a good reason to do so, but I can’t figure out what the right balance is. The thought of eating so much high-calorie food and not countering it with some sort of exercise just doesn’t seem natural to me. Usually, I’d do a long run which would allow me to eat anything and everything in sight. Burning calories is the mechanism which permits me to take more on. I’m doing that to an extent, but I’m not used to watching my weight so closely in the process. Perhaps I’m overthinking it all. I know that I have stepped up the amount I’m eating the past few days. Surely that will result in me gaining weight eventully. Tuesday night I made a mushroom and miso risotto. Piling my plate up higher than ever, I thought I was excited to eat it. By the end, I had to go to bed early because it made me feel so sick. I’d overdone it. That day I had been out for lunch too – I even got a dessert in the middle of the day. What luxury!
So, at around 11am today, I made my way over to the gym again, feeling more determined than ever after my disagreement with the scales that morning. As I left, I saw a bee struggling on the floor. It was on its side and only occasionally moving its legs. I remember seeing on the news that if you see a bee in this state, they probably need some energy. My mind considered just leaving it be – the nature documentary approach – what happens in nature, happens, and who am I to play God with it. I couldn’t do it; God is in my name afterall. I ran back into the house, stirred some sugar into water in a small glass, then went outside and trickled it next to the bee. Satisfied that I had tried to do something (which was better than nothing), I proceeded to the gym. There was a woman outside smoking. I made my way up the stairs and into the weights room, deciding to start with a few back exercises before moving on to working on my chest. Then I’d do legs, before finishing on arms. Easy.
Halfway through my routine, I walked into the cardio room to get some more water. The woman who had been outside smoking was sitting on the exercise bike, leisurely turning the pedals and watching videos on her phone. “She’d be better than me at putting on weight,” I thought to myself. Has there ever been a stranger brand of jealousy? Stop it, Dan. Bitterness won’t increase your weight. Your judging someone on silly things anyway – all of the professional footballers used to smoke 50 years ago and they were healthy. Not as healthy as the ones who didn’t smoke, but you know what I mean. The doctors were probably still recommending smoking at that time, stating it helps you to lose weight; maybe it does help you lose weight… Good job I don’t smoke. I’d be eating my cigarettes now if I did.
I was in the gym for about 50 minutes. As I walked up the drive when I got home, I remembered about the bee I had attempted to revive. The bee was standing upright now and there were ants everywhere, including one standing on its back. An unconsidered and unwanted result of pouring sugary water on the floor was that the ants were now having a field day. They seemed to be mostly leaving the bee alone, at least. The bee was using its legs to wipe its face. It seemed to have more energy than earlier but it still wasn’t flying off. I tried to poke it a bit, but that didn’t seem especially helpful. My David Attenborough moment was here. Although I want the bee to live, it was beyond my control. I stood up and wished it well, before making my way inside. It was time to eat again; I didn’t feel excited.
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.
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.
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.
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.
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!
Dealing with a cancer diagnosis is hard for many reasons. People frequently comment on how well I look and say that I’m dealing very well with it. These types of comments are nice and give me a lot of reassurance and strength. I believe I deal with it quite well given the gravity of the situation. Especially when I consider how quickly it changed everything about my life – I am far less able to be active now, work has not been a part of my life for the best part of 8 months and I’ve had to move back in with my parents. That is all a lot to process, never mind with the added ‘you might die in the next few years’ also playing on my mind. My biggest attribute in dealing with it all, I think, has been simply knowing myself well and knowing how I deal with things that bother me. It may sound generic and stupid, but I really do believe it to be true. I want to discuss it a bit before I go into what the surgeon at Manchester Royal Infirmary (MRI) said today.
The first time I tried yoga was when attending a beginner’s class in North London circa 2019. I went along with a woman that I had been dating at the time. It was a weird time in my life – I had been living and working out in America for about 8 months, working on a big project that we’d won. That project had wound down for a few months as it was between phases, so I was living back in London, but I wasn’t sure how long for. There was talk of my company drawing up an American contract for me, meaning I’d be permanently living out there, for a few years at least. There was also talk of them employing more people out there, though, to make it more cost-effective. I really enjoyed working in America and was pretty hopeful that the contract would work out and that I’d be moving back. At the same time, I loved London, I loved living with my sister and brother-in-law, who I’d been living with for two years, and I knew I’d miss regularly seeing my family and friends. Having said that, I really enjoyed living out in the states and was aware that I wouldn’t have to be there forever. The first phase of the project had gone well for me, so I thought it would be interesting to keep going until the end of the whole project, and wanted to see where it could take my career. One thing was certain, though – I was in two minds about it all. There was an obvious crossroad forming in front of me and I couldn’t decide which route I preferred.
On top of all of this, the situation with the woman I was attending the yoga class with was strange. We had dated before I left for America, but we had cut it off when I decided to move abroad. It was fair enough – we had been seeing each other on average once a week but nothing had really bloomed so to speak. Since getting back, we had seen each other once to clear the air a bit, and I wasn’t sure where we were at now. I agreed to go to the yoga class not really understanding where I stood with her. I also wasn’t sure what I wanted at the time, knowing that I could be going back to the US in the next few months. It didn’t feel like we were ever dating in reality – it never had, to be honest. There wasn’t much of a connection and we didn’t seem to know how to communicate properly; the lack of communication frequently caused problems for us and left me feeling quite self-conscious. I had never really understood what her intentions were in the situation.
Communication and confidence weren’t things I had ever really struggled with whilst dating up to this point. It was the first time I truly felt out of control of a situation with someone I was seeing. It felt weird to even say that we were dating as we weren’t really. We were just hanging out. We got on really well but only ever as friends – why did neither of us just say that, accept it and move on? I didn’t understand why I couldn’t admit that to myself and I didn’t understand why she wouldn’t say it to me either. Why was I investing time in this, when I could just clearly say to her “we’re just friends,” and be done with all of the weird aspects of our relationship? We’d regularly do things together around the city and it was fun. All the awkwardness came from the fact that we had never really identified what the motivation for us hanging out was – at first, I thought it was romantic, but that theory had long faded for both of us, I believe. It was starting to annoy me.
The yoga class was fun, despite me being terrible at it. Yoga is not a graceful thing to be a starter at. You are almost definitely going to look like a total clown during your first few sessions. It is much better to do some at home and learn the basics before going to a class, but I didn’t know that at the time. This class was specifically aimed at beginners, but beginner yoga is not the same as the beginner category in other things. I’ve been doing it for a few years now and I struggle to go up to the intermediate setting on DownDog, the app I use to do yoga classes, or when finding videos on Youtube. As soon as balances are thrown into the mix, it gets much more difficult. I’m better at them than I’ve ever been, but that isn’t saying much.
At the end of a yoga session, you finish in the Savasana position. This is where you lay on your back, with your arms and legs stretched out and separated, and completely relax. Your palms face upwards and your feet relax to the sides. The aim is to empty your mind, allowing yourself to be still. It’s extremely relaxing if you are used to it; if you manage to actually clear your mind of thoughts, it is also extremely therapeutic. I did not know about this position during this class. As we went into Savasana and the instructor told us to be still and try to dispose of our thoughts, my panic levels built. I never just sat and thought about things that were going on in my life necessarily; my primary intention in life was to not think about things as my mind quickly went to bad places and made me worry. I felt much better only tackling my worries when out running, which allowed me to feel productive in tackling those problems. Even running is a distraction, though, albeit a positive one.
All of a sudden, my mind was flooded with negative thoughts. My mind was screaming at me – “Why are you getting yourself back into this weird situation with this woman?” “What happens if you agree to go to America and everything goes wrong with your job?” “Will you miss your friends too much; will your relationships with them start to break down if you’re away for that long?” It was the longest five minutes of my life. I thought I was having a panic attack but I couldn’t stand up or leave as I felt pressured in a room of strangers. It was horrible.
I remember that feeling well. Some of the details about the day are a bit hazy, but I remember the panic I felt during that Savasana. It told me that I needed to do more to address things in my life that I was not happy with. Even if that only meant addressing them with myself to help me deal with them better. It did not necessarily mean I needed to go around shouting my mind about every little thing that annoys me, but I felt that I was uncomfortable with the way I clearly wasn’t being honest with myself about things that were annoying, worrying or upsetting me at the time. The running wasn’t doing enough to help me process these thoughts. When running, you work through things in quite an indirect way, whilst endorphins flood your mind, also making you feel better about those things. It is not addressing them in quite the same way that sitting and contemplating them with a clear mind does.
This is how I am linking my anecdote back to my main point. Through that uncomfortable situation, I bettered my life. I didn’t want to enter a state of panic if I just sat still, alone with my thoughts. My thoughts should be the last thing that scare me – they come from my own consciousness and reflect things I think and feel about the world around me. If I cannot address things with myself, how can I expect to address them with the external world? I had identified something that I considered a weakness in myself and improved it. A few months later, I could easily Savasana because I was taking time to work through my thoughts, not letting them intimidate me. It made me feel more in control of my life. I consider this a key strength of mine now, and one that has been critical in dealing with this journey through cancer.
So, fast-forward to today, with me, Anna and my mum sitting in the surgeon’s office. As is normal for me, I had felt incredibly stressed in the waiting room. The anticipation is a million percent worse than the news for me. Even if the news is incredibly bad, once I know it, I can deal with it. That alone provides relief to me. Waiting around in a hospital, listening to fraught conversations around me and watching the clock ticking is the definition of anxiety, in my opinion. It is hell. As soon as I am sitting in the office and a human is looking back at me, I feel better. It’s my time to know. I was ready.
The surgeon told me a lot of things about my cancer that I did not know, as well as going on to explain what his team’s intentions were from here. Probably the biggest thing that he expected me to know, but that I did not, was that my cancer is in stage 3. The tumour has completely surrounded a major artery. He said that the scan does not seem to indicate that the chemotherapy has managed to make the tumour recede enough that it can be fully removed. There was a big BUT here, though. The CT scan image represents a shadow of your internal body. As a result, it can be quite inaccurate compared to what is actually inside you. It was a key point that I needed to understand before discussing the next options.
It was interesting that my cancer is stage 3. Straight away in my head, I couldn’t help but think that this was the third stage of my treatment so far. I had the diagnosis stage, the chemotherapy stage, and I was moving into the surgery stage. For some reason that thought made it feel better. It didn’t actually matter to me anyway; staging is something that the medical professionals use to help describe something, but it doesn’t mean a lot to me. Us muggles assume that we understand far more than we do about staging, as an oncologist once pointed out to me. “You can have a good stage four and a bad stage one – it doesn’t mean very much on its own,” she had said to me during our first meeting. I’ve held onto that. Just because stage 3 is one away from stage 4 and one above stage 2, does not mean I understand it any more than the next person aimlessly walking around the hospital and attending appointments. Don’t cling onto something you don’t understand – the people who need to understand it are the ones giving you the information and that is all that matters. I’ve got good at saying mantras to myself. They help me sleep better at night.
The crux of the conversation was that they are going to get me in for surgery. He said I could do radiotherapy now if I wanted, but he did not recommend it. Apparently, radiotherapy can cause so much scarring that it can make surgery impossible. For this reason, he recommended doing the surgery first. That surgery did not have a clear plan, though. Until they open me up and look inside, he said, they would not know whether a full removal was possible, or if it would be Nano-knife that would be utilised. Full removal is the best scenario for me but if the scan is accurate, it won’t be possible. The next option, Nano-knife, is an experimental treatment which has not been used very much for pancreatic cancer. They electrify the tumour in an attempt to kill the cells. He told me that there is little documentation and research on its application for pancreatic cancer and that it has not been used very often in this instance in particular (i.e. stage 3, surrounding an artery etc). As a result, he really didn’t know how likely it was to offer good results, but he was willing to try if I was. He emphasised that it was more likely to be Nano-knife than a full removal. I understood. He sent out a few more warnings – may reduce my life expectancy, may not cure me, and he was satisfied that we were on the same page.
We were at MRI for a few hours after that as the surgeon asked me if I’d do another CT scan. The last one was unclear and he could not see the major artery that was surrounded by the tumour. He wasted little time in calling up a friend in the radiology department, requesting an urgent scan and pushing it through the booking system. It was amazing; his colleagues clearly have a lot of respect for him. My family researched him after the appointment and he is an internationally recognised surgeon, so that is very encouraging.
My mum and Anna were both upset, my mum especially. It is hard to hear things when they are put so bluntly, but also incredibly necessary. For the first time in a while, I felt that I left a meeting at a hospital understanding more about my cancer than I did when I went into the room. Now a few hours have passed, I still feel positive about the whole thing. No matter what happens, I’m getting a surgery, whatever that ends up being. The minority of people who are diagnosed with pancreatic cancer can say they managed to get a surgery. I feel well at the minute and I’m managing to run a little and cook a lot. Those things mean a lot to me. So long as I keep myself positive and enjoy these next few weeks before the surgery, that’s all I can do.
Whether I have one year, ten years, or a whole lifetime ahead of me, will only be revealed in time. For now, I have to live every second of my life with the knowledge that this unwelcome cancer is doing its best to destroy my body. All I can do is live with that knowledge and enjoy those seconds with even more vigour. I can’t cry away my disease and it’ll only make my life more unpalatable to try. I choose to spend it in a way which encourages happiness, hope and love, as any alternative to this is too bleak for me to fathom.
I want to thank my amazing family, fiancee, friends and everyone else for their ongoing support. It means so much to me. Dealing with this without you all would be impossible, no matter how established my ability is to address my own worries and concerns. It is a strange twist of fate that I met Anna when I did – without her, this entire journey would have been far bleaker; she is a constant beacon of light, always looking out for me and helping me through the endless curveballs, emotional breakdowns and detrimental diagnoses. Let’s see what comes in this next part of the journey and hope that it is more good than bad. Either way, what will happen will happen, and I’m going to have to deal with it. There’s a strange comfort in that.
“Death is certain, replacing both the siren-song of Paradise and the dread of Hell. Life on this earth, with all its mystery and beauty and pain, is then to be lived far more intensely: we stumble and get up, we are sad, confident, insecure, feel loneliness and joy and love. There is nothing more; but I want nothing more.” – Christopher Hitchens
Elephants and Tea have posted my Dear Cancer story under the title Dear Cancer, Every Cloud Has a Silver Lining. You can find a link to the online post here. The full magazine can be found here. You can purchase physical copies of the magazine on their website which is a great way of supporting their work. It is free to view online.
They do amazing work, providing support for Adolescents and Young Adults (AYA) with cancer. Early on in my cancer journey, I sought out several support groups to help me feel less alone. Although some of them had amazing people in them, no one was under the age of 55. It did sometimes feel isolating, as if I was the only person this young actively seeking support. Finding Elephants and Tea was a huge relief to me, and their online resources really helped me out. I was incredibly happy when they accepted my submission.
In the June edition, you can find many other Dear Cancer letters, from all different kinds of perspectives. I’m still making my way through them but have thoroughly enjoyed the ones I have read. It is also the first time that I’ve seen something I have written in physical print – exciting!
You can follow them on Twitter and other platforms (I assume, I don’t have any others). They will appreciate all of the support, whether it is having a read of their posts, buying a physical copy of the magazine or just engaging with their social media accounts.
The next stage of treatment commences: I have my first appointment at Manchester Royal Infirmary with the team of surgeons. After the disappointment I felt at the final scan results post-chemotherapy, where I went into the meeting thinking I would be getting more information than I did, I’m trying to keep my expectations as low as possible. Maybe my life goal should be to become a blank slate with no hopes, dreams or inhibitions; that would make dealing with cancer much easier. It is tempting to convince myself that this will be the meeting where they will tell me I will be having this procedure on this day and everything is ready to go, but I feel I’m setting myself up to be disappointed by creating those expectations. Perhaps I need to go into the meeting having convinced myself that they are going to tell me absolutely nothing. “It’s an induction meeting,” I’ll repeat to myself over and over again until I truly believe it. That way, no matter what happens, it’ll feel like progress. Unfortunately, I’m not a machine and my stupid emotions won’t allow that to happen.
At this stage, I feel quite sorry for the medical professionals who are dealing with my case. I’m always extremely polite to their faces and truly do appreciate what they do for me, I want to make that clear. After we were told that it may take the surgeons a month to contact me, though, Anna and I left the meeting feeling surprised. An entire month to be contacted? Isn’t that far too long? Why the holdup? Surprise turned to righteous preaching as we spoke to friends and family about the meeting. “He even told us that if they do not contact us within a month, we should contact the surgeon’s secretary! How can they expect them to be so disorganised?” We were riling ourselves up. Righteous preaching turned to minor rage. Then, we realised that hearing nothing from them for a month meant a month of true freedom. No chemotherapy, no hospital appointments, nothing. We decided to do the things we haven’t been able to: go to London, visit Anna’s family in Dorset, enjoy ourselves. I’ve settled into the new life. It almost feels like I don’t have cancer anymore, other than how bad I feel every time I go running. For some reason that is only getting worse. Also the neuropathy. Also the abdominal pain. Ok fine, it doesn’t feel like I don’t have cancer. I’m even using double negatives now; everything is going wrong.
Wednesday evening, as I sat at my friend’s house in north London having dinner, I received an automated message from Manchester Roal Infirmary. ‘You have a new appointment letter. Click here to open it‘ it read. Here we go again – back on the appointment clock. The period of peaceful bliss only lasted about 12 days. Now I’m scorning the medical professionals for contacting me too quickly. I can’t even keep up with what I want from this process; I’d hate to be them on the receiving end of my negative energy (which I keep completely contained between me, my family and my friends, and which only ever lasts a couple of days before I see how unreasonable I was being). It is why I feel sorry for them, but I don’t actually criticise them. I realise that they are probably managing a lot of cases. You need to vent about things to your friends and family, it helps you process information that is difficult to comprehend.
The link that they had text me didn’t work at first. I called home and spoke to my dad to see if I had a physical copy of the letter but there wasn’t one. “Just move on,” I said to myself, trying to seize the day and just let it be. Ten minutes later I tried again; how can I seize the day when I might have a letter telling me that I am going to have my organs pulled apart by someone I have not yet met? This time the link worked and I was in the hospital mailbox. The letter didn’t contain the words ‘we are going to pull apart your organs’, which was a relief. They went for the standard template of time, place, person I would be meeting. A bit boring but understandable. Some may find ‘we’re going to pull apart your organs’ a little too direct.
As I left my friends house, I called my parents to tell them. Once I had hung up I think it all hit me properly. I sat on the train home, holding Lucy, thinking about what might come next. In my head, I bounced between telling myself that it was good and that I need to do this to survive, whatever this was going to be. Then I thought about potentially being under general anesthetic for half a day, about a knife cutting away at my organs, about waking up in a hospital bed and not being able to see anyone that I loved. It should have made the train journey go quickly, but it didn’t. As my mind played mental table-tennis with itself, my eyes evaluated the tube map over and over again, counting the stops before I got home. Lucy the puppy was sat on my lap. She was getting irritated as I wasn’t letting her on the floor. I could see her eyes surveying it for any crumbs that she could lick up. London has been a revelation for her. As you walk her down the street, you have to constantly look out for stray chicken bones and other food that has been carelessly discarded. It is everywhere and she loves it. I didn’t have the patience to deal with her at that time and it was another thing that was stressing me out.
By the time I finally got home, I felt stressed. It took me a few hours but I managed to get out of that headspace. It has come back a bit at times, though. Last night I lay awake in bed for an hour or two. I wasn’t focused on it the whole time, but it regularly seeped back into my mental. It never felt like I was struggling to get to sleep, to be fair. I’d watch something on my phone, listen to a bit of music, read a few articles. Anything to distract myself. Eventually I fell asleep but I don’t remember when. Anna was up at 4:30 this morning for work; I vaguely remember waking up and looking around as she got ready, but not really. Luckily I slept more and I’ve felt energised today.
I’ve spoken before about how quickly humans seem to adapt. We felt it during the Covid lockdowns and I’ve felt it throughout my journey with cancer. For six or seven months, the chemotherapy cycle was everything. None of it was enjoyable, but I made it work. I’d make plans with friends to take my mind of it, joke around with the staff whenever I was attending appointments at the hospital and I’d think of things to write in the blog. It all kept me busy; the time flew by. Post chemotherapy, it took about a week to start winding down from it. Not having these regular appointments anymore started off feeling very scary. As I resumed living a somewhat normal life, I realised that it was a blessing. I can be more independent again – there really is life after chemotherapy!That feeling stuck and it felt like I’d taken a big step towards beating the cancer.
Why did it feel like that, though? I’m barely through the first phase of a complex journey – ever changing and unpredictable. Perhaps it is a defence mechanism. Maybe it isn’t such a bad thing to feel like that; it did help me enjoy life much more while it lasted. Now I have appointments looming over me again and my expectations are building and building. What are they going to say? Will I finally get some concrete answers? Why can’t I just relax and let whatever it is, just happen? Doubt is back and the reassurance of familiarity is gone; no more appointments at The Christie hospital, no more nurses and doctors I recognise. It is all about Manchester Royal Infirmary now. I’ll have to make new connections, learn new processes. Who knows what I’m going to go through in those hospital buildings.
So, this blog post is more for me than anyone else, and it is to remind myself of a tough truth: YOU wanted this, Dan! You wanted them to contact you quickly, you want the surgery (or whatever other procedure you may need to get you to the surgery) and these days you have spent enjoying your life should be the motivation for getting back to normal life, cancer-free and rocking a badass scar. You can tell people that you were attacked by a shark or were involved in a skydiving accident. Or, you can tell people that you went through a major operation, after months of chemotherapy, and likely before months more of chemotherapy. Through the years of abdominal pain, the weeks spent jaundiced in hospital waiting rooms, the shifting diagnosis, the shared tears with your family and loved ones, the sleepless nights and the fear-filled days, you fought on. You did all of that. That should be enough. Sharks and skydiving aren’t necessary. It’s time to sink or swim, and although you hate swimming, you’d rather do it than sink.