On… Email

31st May 202330th May 2023 godley93Blog, Comedy, Communication, Email, Humour, Instant Messaging, On..., Positivity, Social Media, Topical, WritingLeave a comment

It is difficult for my generation to understand how the world worked before emails became a thing. As a 30-year-old, I remember what things were like before email was so prominent, but it was during a time when I wouldn’t have really used it anyway. Despite the fact that many young people now have smartphones before starting puberty, I suspect that few of them are using them to check their emails. Email is a boring medium with minimal intrigue to the Tik Tok generation. They don’t realise how good they’ve got it – having access to relentlessly addictive short-form content, which burns through brain cells like wildfire. When I was young, we had to play with Tamagotchis to get our digital fix, and we’d only speak to each other when we were physically together in school.

Email reminds us of a simpler time when we were grateful for any medium of communication which allowed us to speak without a delay of 3 days or more. Although the letter is often romanticised as a beautiful medium, it is annoyingly slow. It is also error-prone. Letters are easily lost, and they cannot be traced so easily. Emails build on each other, documenting what came before, making it easier to remember what the hell you said when you hurled that email over a few days prior. When reading a letter, you basically have to re-write your letter in your head as you read the response, or it won’t make sense.

Deleted emails go into a ‘Bin’ folder, so one can mull over the decision for a few days. The equivalent action in letters would be burning the paper, which probably feels more cathartic, but is frustratingly permanent. Deleting emails is anti-climatic in comparison. Burning letters contains drama and suspense, whereas you can scroll through your emails ticking little boxes then archive the entire set – how very boring. It is one area where the letter excels in comparison to email. Even setting the computer on fire won’t erase emails. They’re like the Freddy Kruger of communication.

Just as burning a letter is permanent, so are the etchings you make on the paper (assuming you are an adult who uses pens and not pencils). For the perfectionist, writing on paper is like walking a tightrope. Each successful word and sentence formed only adds to the tension, as a single mistake can lead to the undoing of the entire piece. No one likes to see a letter or word scribbled out, but there is no way around it when writing a letter. Your inadequacies are hung in front of your like fairy lights, illuminating the fact that you can’t spell ‘necessary’ correctly, always adding an extra ‘c’ and leaving out an ‘s’.

I created my first email address when I was about 11 years old, and it was something like down-with-kevs@whatever.com. ‘Kevs’ was a synonym for ‘chavs’ when I was younger. Wikipedia defines a chav as “a young person of a type characterized by coarse and brash behaviour.” I was a skater when I was that age, which meant that I used to hang out at different spots around the village all day, being really bad at skateboarding, but still enjoying it all the same. The chavs were seen as the enemy. They were the other group commonly seen hanging around, but we had a good reason to be where we were – we were skating and it was functional – chavs seemed to be there primarily to antagonise others. We were the easiest targets to antagonise, as they were usually older, and had a hunger for thuggery.

One time, when I was out skateboarding, a big group of chavs walked past us and kicked a ball at us. It hit my flip-phone out of my hand and I shouted, “Why the f*** did you do that?” They didn’t like this. Three of them walked over to us shouting some stuff. It was like the hyenas from The Lion King emerging from the shadows in a small pack. One of them grabbed me by the neck with one hand and tried to take the phone out of my hand with the other. I wouldn’t let go. Frustrated, he punched me in the head and walked off. The rest of the group were laughing. I was about 11 and they were at least 16, if not older. From then onwards, I had a potent dislike for people who I classed as ‘chavs’. So, of course, I had to use my private email as a political statement in protest against them. It deeply affected their image in society, and you seldom hear the term ‘chav’ used anymore, thanks to me. My email address single-handedly eliminated the group entirely, and they’re now considered a fringe group at best. You’re welcome, world.

I didn’t grasp the purpose of an email at that age. I can’t remember how much I used it, if at all, but by the time I was actually using my email and signing up for accounts on websites and other services, I realised that I needed to create a new one. My new email address is a variation on my name and some letters – very vanilla, just like an email address should be. No one is hiring down-with-kevs. Down-with-kevs isn’t winning any online giveaways or being put forward for any Nobel Peace Prices. Dan Godley isn’t either, but ‘down-with-kevs’ Godley definitely isn’t. The more successful you are in whitewashing your individuality, the better off you’ll be in the world. Create a boring email and use it to apply to boring jobs so you can earn boring money. Learn to loathe marketing lists, but never enough to unsubscribe from them. Welcome to adulthood – now check your email!

It is truly difficult to imagine how the working world worked pre-email. A hustle of people sat in offices, accosting each other at desks and feigning over endless stacks of paper. ‘Working from home’ was probably considered an oxymoron; something only possible in Sci-fi novels, in the same category as aliens or deadly mushroom viruses that turn people into zombies. Now, most of our working lives revolve around monitoring our inbox in one way or another. Though, there is a disadvantage to email… It leaves a paper trail more permanent than paper even manages. Paper is barely worthy of being included in the phrase ‘paper trail’ with how easily paper can be discarded forever. Paper has the advantage of conveniently going missing when the right people want it to. Most of us have watched a Netflix real crime series covering some untoward case, usually in America, where the key evidence went missing from the evidence room, or where a standard procedure wasn’t followed, but no one seems to know why, as the reports have all gone missing. Emails can be retrieved, to the detriment of corporations and dodgy folk everywhere.

I recently read a piece on Steven Cohen, the man who founded S.A.C Capital Advisors. In 2013, S.A.C was fined an astonishing $1.8 billion for allowing insider trading at the firm. Steven Cohen perpetuated a culture where insider knowledge was considered getting an ‘edge’ over your competitors, both inside your organisation and outside in other organisations. He encouraged the behaviour but recognised that he shouldn’t encourage it, so was notorious in the organisation for not wanting to do things over email. He preferred other, less traceable means of communication, such as a swift whisper in the ear, or a chat over a fancy meal, which probably cost more than the average person’s monthly wage. Still, even Steven Cohen’s despise for email wasn’t enough to stop the emails from doing him damage. Emails exchanged within the organisation were used as evidence in the case against S.A.C. Eventually, he was forced to close it down, but don’t worry, Steven transferred the business to a new name – Point72 Asset Management – and he isn’t doing too badly. In 2020 he purchased the New York Mets. I wonder how he feels about email now… angry, I assume.

My best friend Luke went through a period where he decided that he was going to “bring emails back.” I’d frequently look at my inbox to find an email from him, containing various images off Reddit, and a few updates on his life. He was refusing to use smartphones at the time, but couldn’t resist the cultural drift into the modern age. “There must be a way to share these memes I look at all day,” he must have said to himself, before realising that email could solve all of his problems. Then, my friend George decided to do something absolutely amazing, and shipped his motorbike to Alaska in North America, to then fly out himself, meet his bike, and spend the next year or so riding it all the way south to the bottom tip of Argentina. Along the way, he logged in to a plethora of free Wifi services, ranging from hotels to cafes to superstores etc. Not wanting to use his own email, he decided to use Luke’s. Much to Luke’s dismay, he started receiving a steady stream of “Thanks for registering for the Wifi service” emails. It was a nice way to keep up to date with where George was, but he still receives emails from random establishments in South America and probably has scammers crawling over his emails like digital cockroaches. He has since got a smartphone and has given up bringing emails back. Now he is obsessively wearing dungarees instead.

Despite its shortcomings, I like email as a medium. It is much less obnoxious than its instant messaging counterpart. Email has a natural stagger to it. We seldom send an email and expect to receive a response in a matter of minutes. At best, we give it an hour, and even that is quick. Email is naturally asynchronous in a way that instant messaging is not. Instant messaging seems to tap into some social faculty that is defunct in our brains, one which readily believes that someone hates us if they don’t message back within 5 minutes of receiving our message. Sometimes, if I have something that I think is really important, I’ll send it on Whatsapp, then sit and watch the screen, wondering why I’m not receiving a response, as if that person is physically sitting in front of me and is ignoring me. I have to remind myself that it was my decision to message them and that they have no obligation to get back to me in any timeframe, let alone 1 minute. Email strikes the right balance – you’re there and you can respond, but no one is pressuring you to. It’s all chill – send an email, have a coffee, read a magazine, check your email again – no response; no problem, I’ve got Whatsapp messages to attend to –

“WTF!!!!!!!! I’VE EMAILED YOU FIVE ENTIRE MINUTES AGO AND YOU HAVEN’T RESPONDED. AM I NOTHING TO YOU? DO I EVEN MATTER? DO YOU EVEN CARE ABOUT ME?”

Emails combine the speed of digital communication with the penance of thinking about what you say, not just throwing out whatever you feel like at any given moment, which is what instant messaging services seem to encourage. There is a hint of drama when you refresh your inbox on your phone. A ‘whodunit’ moment, where you wait to see whether your parcel has been delivered, or if someone has added you on LinkedIn. It is a magical few seconds where anything is possible, which is quickly deflated when the only things that appear are marketing materials for a clothes website you purchased a present from 4 years ago. When you’re feeling brave, you can venture into your Junk folder and read about the penis enlargement surgeries, then run away from it again because you’re worried that you’ll accidentally click on the dodgy link. Your inbox is your fortress of communication, from which you command the world. You might have even received a link to this blog in your inbox, which makes it all the more exciting to write. If you didn’t receive it in your inbox, perhaps you should subscribe to it… just a thought…

On… Memory

17th May 2023 godley93Blog, Emotion, Humour, Memory, On..., Positivity, Thought, Topic, Writing1 Comment

Josie, me and Keiran and Glastonbury – 2019

I’ve always had a bad memory. I can’t remember if it was bad when I was really young, because I don’t remember being really young, but I’m sure it’s been a problem for a while. When I hear people say that their first memory was when they were 4 or 5 years old, I assume that they’re lying. I’ve even heard people say that they have vague memories of being even younger than this, but I outright refuse to believe such nonsense. How can someone else remember being an age where their entire diction was no larger than 200 words, yet my first memory is of being 28 and being diagnosed with cancer? But in all seriousness, I think my first memory is probably when I was about 10. Even that might be generous. It really is that bad. I have vague feelings that I remember things, but they don’t translate into anything useful. I think I remember going to school in Hemel Hempstead when I was probably 5 or 6, but if I’m being honest with myself, I think I’ve just seen a picture of myself from around this time, and am misinterpreting my memory with the scene in that picture.

A few years ago, I read a book (I can’t remember what book, and that isn’t another joke) written by the man who holds the world record for reciting the most numbers of Pi accurately from memory. It I remember correctly, which I probably don’t, it took him over an hour of standing at the mic and calling out number after number before he got one wrong. The story blew my mind. Not because I was impressed that someone could do that, although I was quite impressed, but because it was even a thing. If your memory is that good, shouldn’t you be using it for something useful? Why is remembering Pi useful? Why is creating an entire event around it useful? I guess not everything has to be useful. If I could remember something that well, I’d want to make a spectacle of it. I bake cake after cake at the minute and I’m diabetic, so I eat very little of any of them, feeling too guilty to do so. That isn’t very useful. It’s fun, though. He probably thought reciting Pi was fun… It probably is fun when you can do it that well.

Fortunately, we don’t have to remember anything these days because we have Google. For example, I just Googled ‘Book man recite most digits Pi’. If I waffled like that to a stranger in the street, they would assume that someone had been filling my water bottle up with Absinthe. Luckily Google understands me, and according to its limitless knowledge, the book I read was Born On a Blue Day, by Daniel Tammet. I can hardly remember anything about it now. It begs the question – was it a total waste of time to read it if I don’t remember anything from it? Well, hopefully not, as I don’t remember most of the books that I read. Additionally, I don’t remember a lot of things that I have done in my life. If everything I don’t remember is meaningless, then I am notionally disregarding 99% of my life on the grounds that I don’t remember it, so it was irrelevant. Even people with phenomenal memories, like Daniel Tammet, would be disregarding a good 90% of their lives based on this principal, so I guess remembering something isn’t what gives it meaning. The important things probably directly influence you, in a way that is material and tangible, but everything else just helps to shape you in a more subtle way.

That leads me to wonder whether there are things that my brain has gone to great lengths to forget. Sigmund Freud would have emphatically told me that it has, as has everyone else’s. He is a little more successful than I am, so I would tend to agree with him. With regards to one of his more controversial ideas, the Oedipus complex, I’d be a little more cautious to agree. That theory seems to have not stood the test of time quite so well. Sometimes we reject something because it is too truthful, and could present us in a particularly bad light, one that we don’t like to admit about ourselves. Our sense of self-preservation kicks in. We may struggle to accept criticism or, upon hearing someone say that we are a depressing person, for example, we may kick back, telling them that we couldn’t possibly be a depressing person, because we hate depressing people, as if that argument is a tour de force which cannot be disproven.

I can think of times that I have had some negative trait pointed out to me that I have displayed, a trait that doesn’t necessarily agree with the image I have of myself. That has lead me to reject it and tell the person that they’re wrong about me. I’ll then think about it all day, obsessively playing scenarios from throughout my life out in my head, and thinking about how it actually supports what they have said. All of a sudden, the things that I am remembering all concur with what the person said, and I’m forced to admit something that I don’t like about myself. I hope that it has had enough of an impact on me to make me change, and I’ll frequently assess the way that I behave in situations against that critique, but over time I lose focus, and perhaps don’t improve as much as I’d like to. Other times I have, though, and I’ve managed to curtail a behaviour enough that I think I manage to reform it for the better. Other times, I really don’t believe that this person is correct, and I find amusement in their suggestion.

The problem with this method of self-improvement is that memories are notoriously difficult to accurately recall. How we feel during that second that we are thinking about the memory taints it, and our interpretation of it can change from moment to moment, day to day. A memory of a time spent with a significant other can bring plenty of comfort for years. Then, the breakdown of that relationship may cause that memory to taint, and it can be difficult to remember it without feeling a lot of sadness, anger, regret. Sometimes it takes years to look back on it with any fondness at all. Sometimes we never do again, and it will forever hold a negative place in our lives. Those happy memories haunt us, becoming the opposite of what they once were to us. If this is true of the memories that we are conscious of, who knows what becomes of the memories that we’re unconscious of, but that continue to impact our every thought, reaction and motive.

What makes someone like Daniel Tammet’s memory so good, and mine so bad, though? I have an idea of what may have negatively impacted my memory… As a teenager, my modus operandi when “socialising” was to drink myself into oblivion. “Pacing yourself” was a concept that I was aware of, but only came into my life in the form of a flippant joke, as I downed another can of something and became slightly less aware of how much of an idiot I probably looked. Sure, there were a lot of fun times, but I seldom remembered them. They live on in tales told between my friendship group, and I vaguely recall tiny snippets of these memories, probably constructed more from the narrative told than the experience itself. This was my approach to drinking for the best part of 8 years. It was a hard cycle to kick. In some ways, I think I was an alcoholic, but the fact that I established a healthier relationship with alcohol perhaps suggests otherwise. I assume that a true alcoholic can never have a healthy relationship with alcohol. Perhaps it is dependent on the personality type, or the specifics of the abusive relationship with alcohol, or a combination of those factors, and more. What I do know is that my memory is terrible, and I’m willing to bet that excessive drinking played a part in that.

Yet even my memory, plagued with blank spots and steep cliffs, will trigger upon smelling a certain smell, or hearing a certain word. Sometimes I’m not even sure what the memory is, I’m just sure that whatever triggered it means something to me. It’s a strange sensation. I wish I could think of an example, but that would contradict my point. Perhaps it is a familiar smell, one that I smelt during some significant event, but it isn’t enough to trigger an actual memory, it just conjures some emotion or feeling. There are fewer things more powerful than it. It is like that scene at the end of Ratatouille, when the food critic asks the mouse to make a meal for him, and the mouse chooses to make him ratatouille, a standard dish, and one that is not necessarily impressive on its own. But, upon putting the food in his mouth, the food critic remembers being a young boy and eating his mum’s ratatouille, and it brings a tear to his eye, then he announces that this mouse does indeed belong in the kitchen, against all health regulations, because he made a damn good ratatouille. Sure, why not. The central point of the scene is poignant, though. Smells and tastes can evoke a strong feeling. So strong that fast food companies apparently create the smell of their food in a laboratory; it sounds made up, but the smell seems to travel a fair distance from the restaurants, and it does seem to have its own defining personality, one that reminds us of all the other times spent there – with family and friends, through hard times and good. I don’t fall for it, but my memory is so bad that I don’t remember any good times in McDonalds, so I don’t fall for their trickery. There are other smells which evoke powerful memories for me.

The smell of wood being cut really reminds me of my grandad. He was a carpenter and had a cellar filled with big machines and devices used to carve wood. When I was in primary school, we made a model of an aircraft carrier out of wood together. The detail in the model was impressive, with little gun barrels poking out of the sides of the ship. They probably don’t even have turrets there, but I think my grandad was letting me be the creative director on the project. He clearly did all of the hands-on work. After finishing it, we painted it all a monotone blue colour, with no other detail whatsoever, and it looked a little bit unfinished. His field was carpentry, and it held a clear boarder for him. Decorating was a different department.

The smell of incense reminds me of going clothes shopping when I was about 10 years old. At the time, I was obsessed with skateboarding. My dad used to take me and my brothers to a shop called Dazed (I think that’s how it was spelt), and the shop always smelt strongly of incense. I didn’t know what the smell was at that age, or for a long time afterwards. I’m not sure when I eventually smelt it and made the link, but it was years later. “THIS SMELLS LIKE DAZED,” I shouted out once whilst at a friend’s house, after he started burning some. They didn’t have a clue what I was talking about. The sentence came out of my mouth almost involuntarily, and I had to explain to a small crowd what I was talking about, realising as I spoke that it was far more interesting to me than it was to them, or anybody… a little bit like the topic of this post? I’ll make next week’s extra stupid, I promise. If I remember…

My sister Josie claims to remember everything. She will constantly recite back things that we did when we were younger together. I respond with a blank stare, reminding her that I don’t remember anything from 2018, never mind when I was 8 years old. I’m convinced that she just has a more creative mind than mine, and she simply believes that a lot of these things happened because she can see them in her mind, but that they didn’t actually occur in real life. Perhaps that is me being cynical as it is so hard to envision such a world where one actually remembers things, when the one I am used to couldn’t be more different. We’re from the same family, after all. Shouldn’t we have the same propensity for remembering? I guess not. I can’t even remember why I started writing about this in the first place…

On… Commuting

10th May 20239th May 2023 godley93Blog, Comedy, Commute, Commuting, Happiness, Happy, Humour, Lifestyle, Positivity, Topic, Writing3 Comments

Early on in my career, I realised that half of the battle in staying happy in life is learning to enjoy your commute. If you find peace during that 45 minute journey, where you’re sat in stand-still traffic or pressed up against the inside of a train door, then you can do anything else in life with vigor. It is the key to inner happiness. When we think of Monks, we assume that it is their connection to their God and their studious nature which brings them inner peace. Although this is a nice theory, I believe it may be wrong. Monks spend their lives in monasteries, where commuting is a dystopian concept. It isn’t a coincidence. They’re probably unaware of the entire concept of ‘dystopian’ with all that peace and tranquility. To some of us, a monastery seems like a concept reserved for dystopia, but I’m sure everyone agrees that the lack of commuting is anything but. Perhaps I should become a Monk, come to think of it. Na. I like buying things too much.

‘Commuting’ is an elastic word. Although it is commonly used to refer to the regular act of leaving one’s home to get to one’s place of work, it could, in theory, refer to any journey that is made regularly. If I had regular piano lessons, and I travelled there every Saturday at 08:00 to arrive at 09:00, could I refer to this as my ‘commute’ to my piano lesson? I might. It might even be acceptable to describe it as such. It is certainly acceptable according to the Wikipedia page for commuting, where the following is stated:

Commuting is periodically recurring travel between one’s place of residence and place of work or study, where the traveler, referred to as a commuter, leaves the boundary of their home community. By extension, it can sometimes be any regular or often repeated travel between locations, even when not work-related.

Notice the use of the word ‘even’ in that paragraph? “…EVEN when not work related.” What exciting lives we lead in the modern world. It makes me think of the interview with then british Prime Minister Theresa May, where a reporter asked her what the naughtiest thing she had ever done was, with the slightest hint of sarcasm in her tone, but still said very professionally. Theresa May responded in a babbling fashion, trying to buy herself time to think of a realistic yet relatable answer – “Oh goodness me…. Erm, well I supposed the… Gosh… I’m not sure… No one’s ever perfect are they… Well, I have to confess, when me and my friends would, sort of, run through the fields of wheat…well, the farmers weren’t too pleased about that.” You can’t watch it without covering your eyes and cringing. I think Theresa May might have written the Wikipedia page on commuting, based on her response that day. I’m surprised it didn’t come up after that question was put to her.

Reporter: “So, Theresa, what is the naughtiest thing you have ever done?”

Theresa May: “Well, erm, I guess I’ve, erm, been a little aloof with my siblings in the past. I EVEN described my journey to my brother’s house for Sunday dinner as a ‘commute’ because I was doing it every week. He didn’t appreciate that.”

After she said it, you could sense the world collectively groan back at through their TV screens, before immediately changing the channel. It would have actually gone down better than what she said – at least it would have hinted at the fact that she had a sense of humour.

But I am not talking about the type of commute where you frequently make some nondescript journey. I’m talking about that forced journey that you make at the worst time of the day, during rush hour. When everyone in the world looks miserable because they got out of bed earlier than they wanted to, to go to a place where they’re constantly scrutinised on their ‘performance’, whilst making someone else a lot of money, which they only receive a small percentage of in return. That morning slog to your place of work.

If you’re driving a car and you’re unfortunate enough to meet another person’s glance as you’re sitting in traffic, you see the same misery that is painted over your face in theirs. You both quietly acknowledge it, before quickly looking away and pretending that you aren’t still wondering if they’re looking at you. What else are you going to do? Think about work? Gaup at another car? There’s nothing better to do. Just stare forward and try to think of nothing.

In London, on the underground, making eye contact with someone is considered assault during rush hour, and it is to be avoided at all costs. There are reports of people actually turning to stone upon making eye contact with each other on the tube in rush hour. I haven’t seen it happen myself, but I’m not willing to find out if the stories are true or not. Here is a little run down of my daily commute on the tube…

As soon as I enter the train carriage in the morning, I run for the only seat that is still available and throw myself on it. Then, I take out my book from my bag, ensuring that the only place I look is down, before opening it up at any page at all (I don’t care where, so long as I am too busy to engage with anyone around me), and that is where my gaze stays until it is my stop. Then, I put the book in my bag, immediately produce my phone from my pocket, check my emails quickly as the train pulls into the station and, when it stops, I finally look up, stand up, and leave the train. A sigh of relief involuntarily leaves my mouth, and I start to shake the hands of every person around me whilst staring them straight in the eye, like a politician, congratulating them for successfully making it through another commute. Then I realise that I have a 20 minute walk to my office from the station, which means that my commute is technically not over yet. Horrified at this realisation, I repent to the commuting Gods and ask that they forgive me for my transgressions, for daring to look another commuter in the eye. Then I nervously run to my office, purposefully barging into people in the street to make sure that they know that I am a commuter and I will damn well act like one, with my eyes fixed on the pavement in front of me and a total disregard for anyone or any thing that isn’t me. Later, when I get a notification from my bank telling me that London Underground have charged me for the journey, I am reminded that I actually pay to do all of this, and the indignation weighs heavy on me for a while. Then I get the tube home and forget about the whole thing. Same again tomorrow, I guess.

Commuting seems to drive people clinically insane. When I used to get the tube from London Bridge, in central London, to Canary Wharf, I would always take the Jubilee line. If it is running to schedule, there is a train every 2 or 3 minutes. It is quite impressive. Despite this, sometimes I would be walking towards the platform, where a train would be sitting with people alighting from it, and I’d accept in my head that I’ll just get the next one, as there are too many people around to allow me to sprint at it, and there will be another train in 2 minutes anyway, so why would I? Next thing I know, Tom in the Blue Suit is bursting past me from behind, as if this train was the last train to heaven and if he didn’t catch it, he would immediately be damned to the train to hell and nowhere else. I’m sure in his head he has a scene from an action film playing, and as he dives towards the train doors, the bell ringing out to signify that the train is going to leave and doors are closing, he thinks he has made a fantastic decision. Then, as he dives through the closing gap, the entire world probably goes into slow-motion a la Matrix style, as he narrowly slips through the gap, the door closing on the heel of his back foot. “Please do not obstruct the doors,” says the train driver through the tannoy, in a frustrated tone. Tom pulls his shoe from the gap with great effort as the doors angrily clap together behind him. He then smiles to the hordes of people crammed into the train, some of which he has just shoulder barged on his way in, then continues to look down and assume his position as unassuming commuter #235987245897349683045892034729845938460395863. Well done, Tom, you saved yourself 2 minutes. Enjoy getting to work earlier you absolute moron.

Of course, the recent wave of Working from Home has seen a decline in commuting. Whether working from home (stylised as ‘WfH’ or ‘WFH’) is a positive thing or not seems to split opinion. I feel like most people that I know are in favour of working from home, but I know a few people who are ardently against it too. In my experience, the answer seems to be in balance. Covid-19 presented us with a rare opportunity where we were forced to stay in our homes, and work from them all of the time. We had to do everything from them. I even had to do my family Christmas from my own home, via Skype, because Boris Johnson announced another lockdown about 2 minutes before I was leaving to get the train home for the holiday. Bah humbug.

Commuting became an ideal of the past, a distant memory of a world not plagued by… plague. One where it was common to see groups of young professionals outside the pub at 18:00 on a Wednesday, armed in suits and drinking beers, and where it was a given that we’d all be travelling into work the next morning, assuming it was a week day, but we all thought nothing of it. We all had more stamina then, and going out for mid-week drinks was part of the job. How life has changed.

Working from home was a benefit that I had experienced at my old job, but it was something that you had to beg for, and have a ruddy good reason for asking. Then, the pandemic happened, and all of a sudden the world required everyone to WfH all of the time, or risk death. We all started judging each other on how willingly we wore masks in supermarkets. I remember someone pointing out that all of the youths that used to love wearing masks in public were now refusing to wear them in an act of defiance, an apt observation which I thought of every time I saw a group of bustling teenagers in a shop, not wearing masks and staring you out for daring look in their direction.

I now go into the office twice a week and I have to say, it is quite enjoyable! It is nice getting out of the house, putting on some nice-ish clothes, and seeing people face to face. The whole thing feels quite novel. Yet, now there is more of an expectation on us to do so, the office is the worst thing ever again. There are no winners. Humans are destined to be unhappy – that is my takeaway from it all. If there is something to be dissatisfied with, we’ll find it and we’ll milk it dry. When we were working from home, we wanted more money to cover the extra heating bills, but now we’re back in the office, we begrudge having to pay the money to commute.

But I have lots of positive things to say about the pandemic AND about post-pandemic life. The pandemic actually presented me with a few rare opportunities, of which I will forever be grateful. I was living in central London when it hit. During my long runs on a Saturday, I’d run along the Thames path right next to the river, through central London and around Southbank. There was a time that I was running over the Millenium Bridge, the bridge which crosses the river next to The Globe theatre and leads you straight to St Paul’s Cathedral, and I couldn’t see a single person anywhere. It felt like I was in a zombie film. No tourists, no commuters, no street performers. Just me, the Thames, and an eerie sense that the world was ending. The world wasn’t ending. In fact, there were images of fish in the canals in Venice, and wild animals venturing into the towns in Wales… the world was actually doing better and we were the problem all along – who knew? But it was a peaceful time, and I’ve never experienced a London like it in all my time of living here.

So, I’ve tried to make something of my commute, as it is the only thing standing in my way of enjoying my 2 days in the office… I try and use it to do something useful. I’ve been reading through all of Patrick Radden Keefe’s books, an investigative journalist who writes incredible non-fiction, but has such a smooth writing style and finds such interesting topics to talk about, that makes you wish that the commute would never end. I’ve started writing on my commute on my phone too, or I’ll respond to a bunch of texts that I’ve been sitting on (apparently, a side effect of having had cancer is that you get really bad at doing life admin). I feel like it is reforming my opinion of commuting. It does help that where I live now is a little quieter on the commute, and I usually get a seat… I wouldn’t be spinning a positive ending on this if I still lived in London Bridge, that’s for sure. And I stand by what I said at the start of this – if you can find a way to enjoy your commute, you will probably be a much happier person overall. I feel like I’m moving past a notional concept of enjoying my commute, though, which is what I used to have, and am actually starting to enjoy it for real. If I see Tom in the Blue Suit, though, I’m going to trip him up and laugh to high heaven as his train departs the station without him!

On… Ennui

3rd May 20232nd May 2023 godley93Blog, Positivity, Writing, Social Media, Humour, Bored, Words, Language, Technology, Social, Media, Comedy3 Comments

There is a popular saying which states that ‘only boring people get bored’. I’m assuming it is popular. If it wasn’t, I doubt I’d have heard of it, but I can’t seem to attribute it to anyone in particular. Boring people presumably do get bored, but I think other people might get bored sometimes too. I’ve felt bored loads of times. Am I a boring person? Maybe.

When I’m bored, I like to find an over complicated word to describe something commonly referred to by another name, then drop it into conversation with someone, and act stupendously shocked when the unsuspecting party does not know what it means.

“What does ennui mean? Why it means ‘bored’, of course! You should read more; you’re falling behind my level of repartee [banter]!” There’s nothing like talking down to a close friend or family member for your own amusement, and the experience will pay dividends in keeping you anti-bored. You can think about it for days, weeks, months, even years. You’ll laugh to yourself, thinking, “Oh I got them so good that day. I wonder what they’re up to now? They don’t really speak to me anymore. Come to think of it, no one does.”

Boredom is the modern day plague, being passed from indifferent subject to indifferent subject. Our toxic boredom leaves us believing that there’s nothing left on Netflix that is worth watching, that our phone’s limitless capability is incapable of keeping us entertained, and allowing quick-fire apps like TikTok to flourish, because it removes the inconvenience of ‘thinking’ and ‘focusing on a single thing for more than 30 seconds’. We can’t even be bothered to have a favourite news outlet anymore, so we let social media tell us what news articles to read. Gone are the days of ‘journalistic integrity’, whatever that means. It’s all about clicks, clicks, clicks. Loyalty is just an archaic word now. We just open whatever is thrown onto our newsfeeds, moving seamlessly from one to the next, allowing the algorithm to dictate what we do next. One minute you’re reading about the Kardashians and how they wore clothes to something, the next you’re in the bowels of an extremist apologist page, finding yourself agreeing with the discourse, yet not realising that you’ve slowly been inveigled [persuaded].

We trust the algorithm of social media websites so sincerely that it is a shame it is a faceless, lifeless entity. We’d probably rather be friends with that than most of our real life friends; definitely our family – we don’t even get to choose them, so we’re bound to not like them. Besides, the algorithm takes time to learn what we like. Damn, it even tells us what we like. Over time it actually decides what we like, and it is far more adroit [skilful] at figuring it out than we could ever be.

But we like that, don’t we? I don’t have enough time to decide what I actually like in life anyway, so I’d rather let AI do it for me. That way I can dedicate more of my time to having nothing to do. I can maximise my boredom even more efficiently if I start to ask Chat GPT to write my blog posts for me, then get it to answer the comments from the community too, then hopefully, in time, it will attend my family Christmas meals for me, and make friends with my colleagues, and even do my work. In the future, it might even be a good husband to my wife for me, freeing up even more time for me to do absolutely nothing. I’ll have so much time to be bored – it’s going to be terrible. I can’t wait!

Boredom is promoted in our society, as the antidote to boredom is buying more things, going on more holidays and disliking others more for being less bored than you. That creates an environment where evil can flourish, the type of evil that is above boredom, and is ready to pounce on those negative feelings. Sure, we can eat grapes all year round thanks to globalisation, but that isn’t enough to feel happy, is it? No – we’re bored of all of that. Yet, while we sit bored, Putin is invading Ukraine, Amazon is the only company left in the world and James Corden still has a career, despite being a despicable human being who would pander to an autocratic psychopath if it would advance his career in any way possible. Avarice [greed] is held in high-esteem, whilst being satisfied is looked down upon, as if one is never supposed to feel content with what they have.

Yet even I, with my erudite [learned] understanding of ennui [boredom], occasionally fall into the trap. I’ll be sitting at home, too tired to read and the evening still too young for me to go to sleep, and I’ll think to myself – “isn’t life boring?” I wait for a response from the universe… nothing. Knew it; that would be too interesting. The mind can enter a free-fall mode when it is in this sort of defeatist mood. Everything reinforces that negative feeling; you message a friend to see what they’re doing and they don’t text you back for 30 minutes… well they obviously despise you and think you’re boring and don’t like you and are probably sat talking to someone about how annoying you are right that very second. You get off the sofa and try to cook something, but you’re out of that one spice that you need… so you plan on going to the shop, but the shop closes in 20 minutes. Besides, they never have that ingredient anyway – they’re always sold out of it. You’re always walking up to the shelf just as the last one is snatched up by someone better looking than you, right in front of your very eyes. Then you hate them for taking it, and for being better looking than you. They probably never get bored.

But there are people in the world who have a curiosity which pays dividends. Simple things can deliver a world of intrigue and pleasure, if allowed. For me, I like to find interesting words and write them down in the Notes application of my phone. I’ve got a long list of interesting words, with a short definition next to each, so I can trawl back through them when I’m sat around drinking my coffee in the morning, and recite the ones that I particularly like back to myself. Sometimes the sound of a word is pleasing, such as the word ‘vexatious’, which is defined as ‘causing or tending to cause annoyance, frustration, or worry’. Other words have a pleasing definition, such as the word ‘syllogism’, which is defined as ‘an instance of a form of reasoning in which a conclusion is drawn from two given or assumed propositions’.

(Vexatious actually sounds cool to say AND has a pleasing definition, but I couldn’t squander an opportunity to use ANOTHER word as an example).

Well, I am declaring war on being bored. My promise to myself is to never be bored again. Not by burying myself in social plans and never being alone; no. I’m going to become a master of being alone. I am going to abandon my loquacious [talkative] nature, which demands that I seek out large groups of friends and make them laugh until their jaws hurt (which I am an expert at on my good days, honestly). I’m going to watch paint dry for so long that I am engaged in it’s story, like watching Breaking Bad, or the first 5 seasons of Dexter (and strictly no further). I’m going to read the dictionary for fun – riding the pages like a rollercoaster, until I slam the back page closed and wonder where the time went. I’ll read the dictionary with such enthusiasm that my sobriquet [nickname] will be ‘Dictionary Dan’! My dictionary will be my closest confidant, never to be read sub rosa [in private].

Diabetes for Dummies

1st May 20231st May 2023 godley93Blog, Diabetes, Diet, Happiness, Health, Hospital, Lifestyle, Positivity, Recovery, Support, Values8 Comments

The ‘for dummies’ brand is a series of books which aims to make a plethora of topics more accessible for the average Joe. They present information in a logical format, breaking it down into meaningful parts which build on each other. For example, in my old job, I had to learn the database querying language SQL. I got myself a copy of SQL for Dummies, and found it very helpful in learning the basics of the language, and it is the closest that I have ever been to being proficient in another language. It’s a shame that the only thing it allowed me to communicate with was a database, rather than people from other countries. I didn’t achieve a level of proficiency where I was dreaming in SQL either, so I don’t think I ever crossed the threshold into being considered a ‘native’ speaker. Damn, did I query some databases, though.

I haven’t directly discussed diabetes too much in the blog so far. As I sat flirting with the idea of doing so, the thought came to me about the ‘for dummies’ book series, and how it would be fun to write one for diabetes. Well, lo and behold, they’ve already got several books on diabetes, including – ‘Type 1 Diabetes for Dummies’, ‘Diabetes for Dummies’ and even ‘Diabetes Meal Planning & Nutrition for Dummies’. They are prolific. If you are looking for a truly informative experience, I would highly recommend going for one of the official books. If you would like the Dan-ified, ‘woe is me, I had pancreatic cancer’ version, however, you’ve come to the right place. Pull up your socks, grab a drink of sugar-free water and let’s begin.

It’s always nice to start discussing a topic with a little anecdote, so let’s start there. Having diabetes could have won me some money, if I was a betting man. When I was younger, a few of my good friends decided to host a wager. All of them were eating a lot of chocolate and drinking a lot of sugary drinks at the time. In this coterie were two of my best friends, Luke and Dave. For example, Luke enjoyed buying 2 bottles of Lucozade at lunch (they were 2 for £1.50, or something like that) every day, and using that fluorescent orange liquid to help digest a Boost bar, which might be the sugariest chocolate snack on the market. This common habit of consuming an eye-watering amount of sugar every day led to a disagreement in the group. None of them could decide who was going to get diabetes first. To settle it, they all decided to pledge £20 each, and whoever got diabetes first would win all of the money.

If you’re now thinking that this isn’t very much money and it sounds a little stupid, you are correct. It is very stupid. I opted out, as I actually wanted to keep my money and not get diabetes. I hoped that any bad eating habits I had at that time were me living out my young years to the fullest before I was forced to follow a stricter diet due to my metabolism starting to give way to my age. Well, look how that turned out for me. I was indeed the first to get diabetes, and it was totally out of my control. The jury is still out on who is going to win their competition, but I’ll be the first to laugh when it does finally conclude. They’ll have to give the winnings straight to me to get an early edition of my book, ‘Living with Diabetes for Idiots Who Bet Against Their Own Health’, which I will be holding back on releasing until after their contest is concluded, so I can charge the winner an excessive price. It won’t be winning any Nobel Peace prizes, so I may as well hold onto it until then.

Let’s start with the basics… Insulin is a hormone which is produced in the pancreas by pancreatic beta cells. Easy, right? No, you’re right, I don’t really understand what that means either. Basically – cells in the pancreas create, store and release insulin. When the body detects that the level of glucose in the blood is increasing, the beta cells release insulin, which causes glucose to transfer from the blood to the cells in the body. The body’s cells need glucose for energy. If the glucose levels in the blood are too low, the subject experiences symptoms such as light-headedness, sweats and ‘jelly-legs’. If the glucose levels in the blood are too high, the effects are less severe in the short-term, but especially high glucose levels can lead to symptoms such as headaches, excessive thirst and even vomiting. In the long term, consistently having high blood-glucose levels can cause severe issues, though, such as blindness, and can result in limbs needing to be removed… Not fun.

Consuming carbohydrates causes blood glucose levels to increase, necessitating the release of hormones such as insulin, which then encourages the glucose to transfer from the blood and to the cells. How on earth healthy bodies manage to do this so seamlessly is totally beyond me. Only when you are manually managing your blood glucose levels do you realise what an absolute pain in the arse this process is. Nearly everything changes how the body processes carbohydrate – the temperature, how stressed you are, the amount of exercise you have been doing, whether you are ill, how many goals your favourite football team scored last night (that last one may be a joke, but if it increases the level of stress you are feeling, it might actually be applicable). Yet, healthy bodies just sort it out. I, however, am left trying to account for a million factors that I do not understand, whilst also trying to eat as much dessert as possible, and feeling forty times more bad about doing so because I know that it is just going to make my night harder, as my blood sugar peaks and troughs, causing the alarm to go off repeatedly on my phone, and waking me up every few hours. I’m complaining again, aren’t I? Sorry, back to the hard hitting facts (which are under-researched and prone to error).

Type 1 diabetics are reliant on insulin to moderate the glucose levels in their blood. Type 2 diabetics are not, but have to adjust their diet to help control it. There is also a little-known third category of diabetic who walk this earth – Type 3c. The NHS do not recognise this as a distinct category, so they are commonly lumped in with Type 1s, because both are reliant upon injecting insulin, due to the body not being able to naturally create it. The politically correct term for a person who relies on injecting insulin is ‘Insulin dependent’; this avoids offending anyone. I am actually a Type 3c diabetic myself, so I know how it feels to be part of this stigmatised community who are not recognised by the NHS, and who have no rights under The Geneva Convention of diabetes.

The difference between type 1 and type 3c diabetes is the following. Type 1 diabetes usually occurs due to an autoimmune reaction where the body identifies the insulin-creating cells in the pancreas as the enemy, and proceeds to attack them until they’re mostly dead, leaving the subject unable to create, store and release the hormone anymore. See all that praise I gave to the healthy body earlier for being able to regulate blood glucose levels so effectively? Well, guess how much praise the immune system is getting? Nada. Do your job and do it properly!

Type 3c diabetes, however, is caused by damage to the pancreas. In my case, that damage was done by removing the pancreas entirely, so I would say that the definition doesn’t really go far enough to cover what occurred; sort of like an individual claiming that they will paint your walls, but then proceeding to plant explosives in cans of paint all around your house, and detonating them all at once, ensuring that paint did indeed go on the walls, but failing to mention that those walls would no longer be standing. You feel a little hard-done by re-reading the definition, and you wonder if it does justice to the events. Anyway, I digress.

If you’re wondering what Type 3 diabetes is (without the ‘c’), I truly have no idea. I’ve tried to read about it before, but it seems to be touted as an early sign of alzheimer’s, although I’m not sure if that is proven or just a theory. None of it makes much sense to me. Does it mean that I am likely to develop alzheimer’s disease at a statistically early age? I have no idea. Let’s hope not. This blog has already shown my proclivity to focus on the negative, so I could do with less things to worry about if possible, not more. Thanks.

So, what does it mean, having to regulate the body’s blood glucose levels yourself? These days, there is some pretty incredible technology around to help. I have a circular device in my arm called a Dexcom which monitors my blood glucose levels. This type of system is called a Continuous Glucose Monitor (CGM) system, as it continuously sends readings to an app on your smart device. If my blood glucose levels are going too high or too low, it sends out an alarming (and sometimes embarrassing) noise to warn me, allowing me to correct it by either injecting insulin (if it is too high) or consuming sugar (if it is too low). Sugary drinks are the best way to get the blood sugar up again, as it reaches the bloodstream quicker in this form. Sweets like jelly babies and fruit pastels are good too. Anything that only contains sugar is best, as if it also contains a lot of protein and/or fat, it will take longer to break down and extract the sugar. The same applies to starchy carbohydrates, like potatoes and bread. Although these things contain sugar in the form of carbohydrate, it is processed in a different way to less complex carbohydrates, as the sugar is mostly extracted in the small intestine, rather than during digestion in the stomach.

The game of keeping your blood sugar in the correct zone is akin to playing the old game Flappy Bird on your iPhone. If you don’t know, Flappy Bird was a game released on the App Store in 2014. It took the world by storm, and everyone was obsessed with it. The objective was simple – you are a bird, and when you tap the screen you flap your wings, causing you to rise slightly. If you didn’t tap, you fell again. In the game, you were flying along horizontally, and there were various green pipes that would appear from the top and bottom of the screen, so you would have to either tap the screen the right amount of times to fly over the pipes, or moderate your tapping to dip below them, depending on which part of the screen they were appearing in. Well, with your CGM, you are essentially doing this, but instead of it being a fun game, it is integral to your health (it is a little bit fun in a strange way, though).

The Diabetic’s ‘Flappy Bird’ – Screenshot from the Dexcom Application

Keeping your glucose levels between 4 and 7 is considered ‘perfect’ control, if you can keep it there. My 90 day average, according to my Dexcom app, is 7.7, which I’m very happy with. I’ve heard some people say that they strive for an average of around 10, and others who try to keep it in the ‘perfect’ range. I believe if your average is as high as 12, that is where you may face problems in the medium-long term. I try not to read about it too often, but I believe it is in this region where blindness can become an issue, as the blood vessels in the eyes are very delicate, and having high levels of glucose in the blood can damage them.

Different people feel the lows at slightly different numbers. Personally, I don’t start actually feeling any effects until I’m as low as 3. Some people are quite sensitive to them I believe, and will feel off as soon as it hits 4. On the few occasions that I’ve not had a CGM device in, and I’ve had to test my finger to manage my insulin levels, I would start feeling light-headed, prick my finger and wipe the blood on the testing strip in the small glucose-reading device then, to my horror, find out my glucose level is at 2.7. It has shocked me a little bit, as I rarely see my levels go that low, and I start getting paranoid that any second I’ll pass out. But I’ve never had an event where I’ve gone unconscious, and will aim to keep it that way for as long as possible, if not for my entire life.

Low blood sugar is particularly dangerous, as it leads to the patient passing out far easier than the blood levels being high, as far as I am aware. This occurs due to the cells in the body not having enough energy. The opposite, where your blood sugar is very high, can also lead to the subject going unconscious, which I didn’t even realise until recently; I thought you could only go unconscious from low levels, but apparently if it gets very high, you can pass out from dehydration. The more you know, the more you wish you didn’t have to…

It is worth knowing the symptoms of low or high blood sugar, as it may help you save someone’s life. Low blood sugar can lead an individual to seem drunk – they will appear drowsy, shaky, weak, sweating, and may struggle to speak. High blood sugar is a little different and probably harder to tell from any external physical symptoms – the patient may feel the need to drink a lot, feel tired, get headaches, experience nausea and vomiting, and develop stomach pains. Quick action is essential if someone falls into a diabetic coma, or is on the verge of falling into one. That is why you should take it seriously if you see someone who looks visibly impaired in public, and not simply dismiss them as a drunken idiot. Pay attention to their wrist and see if they have any sort of medical band on, which identifies them as having diabetes. Falling into a diabetic coma is very dangerous for someone with diabetes, and will result in death if it is not urgently treated. Knowing these things can save someone’s life. If they are still awake enough, encourage them to drink something sugary, like fruit juice or Coke. Make them drink about 100 – 150ml of the liquid, that should be sufficient. If they are already unconscious, call an ambulance immediately.

Anyway, back to the less serious stuff. My new favourite pastime since becoming a Danabetic is finding low sugar drinks that I can enjoy, that are not full of total crap. When you look on the side of a Coke Zero can and it claims that it has 0 of anything in it, you have a right to be suspicious. Trip is a good brand, and has the added benefit of containing CBD. The Elderflower Mint flavour is amazing, but I cannot taste an iota of elderflower in it; it is all mint, which is fine with me. Another good brand is Punchy, who do a Blood Orange, Bitters and Cardamom flavour which is TO DIE FOR. Blood orange is so underrated as a flavour.

I also enjoy Kombucha drinks, and they are usually very low sugar too, but I’d say it is a more controversial flavour, and one that some people really despise. I used to despise it, but then my life got flipped-turned upside down a la Prince of Bel-Air, and low sugar drinks became more of a prerogative to me, so I forced myself to try it more. Lo Bro’s Passionfruit flavour is a good one, if you are looking to get into kombucha. It is quite vinegary, which doesn’t sound appealing, I know, but it’s very good for you, and the perfect drink if you are northern and want an excuse to drink vinegar.

None of these drinks are particularly cheap, I know, but considering I hardly drink alcohol anymore, and they are all low sugar, I think it is worth it. If you are trying to reduce the amount of alcohol you are drinking, or just want some exotic drinks to dive into in the evening, I’d recommend all of the above. Now, one last point, then I’ll wrap this up.

Since being diabetic, I have felt more of an affiliation with mothers who have to breastfeed in public. Stay with me… On the tube, I occasionally have to inject insulin due to my blood sugar going high. I’ve done this a few times on the way into work, when the train is absolutely rammed and I barely have enough room to maneuver the pen into my stomach. Usually, as I pull the pen out of my bag and attach a needle to it, I see people inquisically trying to watch, whilst also trying not to seem rude. Sometimes, they don’t care about seeming rude at all, and they just stare at me, trying to figure out what I am doing. One time, a little girl who was sitting next to me asked me what I was doing. I told her that I was diabetic, and that I had to inject insulin to keep me alive. Her dad then apologised to me and told her to leave me be, but I actually found the whole interaction quite sweet.

It makes me think of mothers having to breastfeed in public, and how they also probably monitor the reaction of those around them. I am also aware it isn’t actually akin to the experience, and that the act of breastfeeding your child is a far more intimate act than shoving a needle into your belly, but you know, I am one step closer to knowing what it feels like. I stand with you, breastfeeding mothers in public, and know exactly what you go through every day. We should link up and start an advocacy group – I don’t mind being president and mansplaining our grieves to anyone who will listen. Consider this my application.

So, there is volume one of Diabetes for Dummies. Hopefully you’ve learnt something and, if not, well done, you know a lot about diabetes already, and probably listened much more attentively in Science than I did. I’m coming up to my 1 year anniversary since being diagnosed, and feel like I’ve come a long way in that time. Initially, I found it all really hard and scary to get to grips with, but it does start to get much easier. You become more confident in your decisions, and more in control of the overall situation. I could write another 400 posts about the lack of support for those first few months, but I’ll save that for my next release, ‘Fighting Diabetic Authority for Dummies’.

Waitin’ Round to Die; Anticipating More Scan Results

1st February 20232nd February 2023 godley93Blog, Cancer, Chemotherapy, Health, Lifestyle, Music, Pancreatic Cancer, Positivity, Scan Results, Scanxiety13 Comments

The Road to Recovery

I tried to kill the pain, I bought some wine and hopped a train
Seemed easier than just waitin’ round to die

Townes Van Zandt is widely regarded as a veteran of American songwriting. I don’t listen to a wide variety of his music, but I’ve loved ‘Waiting Around to Die’ since I first heard it years ago. I remember being taken in by the finger-picked guitar and grimy lyrics. It is one of those songs where the whole is greater than the sum of its parts. You can learn and play the main riff on your acoustic guitar, but you can’t make it sound as good as it does on the recording for some reason. I feel similarly about Bob Dylan’s song ‘Don’t Think Twice, It’s Alright’. That song is also primarily made up of a picked acoustic guitar pattern and a vocal, and is equally as difficult to play to the standard of the recording. Both songs are tantalising in their delivery.

One of the first things I did after hearing the song was looked into the background of the artist. The lyrics in the song are so painful that I wondered just what went on in his life that made him write such heart-wrenching words. I think the Wikipedia page dedicated to him best summarises his ills under the ‘Personal Life’ section – ‘Relationships’, ‘Addiction’, ‘Death’. He was married several times, struggled with addiction throughout his life, and, if the lyrics to Waiting Around to Die allude to anything, seemed to have an unhealthy fixation on death.

The song is so poignant and powerful that I remember seeing a live video of him performing the song, whilst a man watching in the background sat crying through the performance. It made me feel a little inhuman, and like I lacked empathy. The song evokes quite a different reaction from me. I find myself listening to it sometimes to remind myself that things just aren’t that bad. “At least I’m not feeling negative enough to write ‘Waiting Around to Die’,” I’d think to myself on those days where I find myself struggling. If I ever think I am at a point I could write a song like that, I would be very worried about myself. It is so grim in its outlook that it almost paints a caricature of just how painful life can be, and how downtrodden one may feel as a result of it. Although it provides the right environment for a fantastic song, it doesn’t seem to provide the conditions for a healthy and happy life.

One time I will agree that I feel like I am waiting around to die, though, is when I have to wait for scan results. The next set of scan results are particularly important as they are the ones which will vindicate me of all cancer treatment moving forward, should they come back clear. If the news tomorrow at the 14:00 meeting at the hospital is that there are no signs of cancer, I will be hospital appointment-less (not yet a term recognised by the Oxford English Dictionary) for the first time since being diagnosed in November 2021. It will also be the first time that I will not have any more treatment on the horizon and will be considered ‘cancer free’ (also known as ‘Under Surveillance’, but I prefer the phrase ‘Cancer Free’).

Today I went to do the pre-results meeting blood test. I must admit, I had a spring in my step. I’m trying my best not to assume that the scan will be clear, but I can’t help but fall victim to the prospect of hope. After a really tough month of treatment, I am finally feeling my health start to improve again. My head isn’t so cloudy in the mornings, I am managing to eat without feeling sick most of the time, and I’m finally starting to go on daily walks again; I’m having to build the distance up slowly, but am managing to comfortably do 30 minutes most days. It is crazy that this is the standard of fitness I now measure myself by, considering I used to frequently run 50 miles in an average week, but that emphasises the toll that cancer treatment has on your body. I’m probably still recovering from the surgery in many ways, and my blood sugar occasionally has its days where it throws all of its toys out of the pram and decides to be a nuisance all day, constantly going high or low, and refusing to get in line.

Despite reminding myself that there is no certainty that the scan results will be clear, I walked into the hospital feeling like I was exhausting a tickbox exercise more than I was undergoing something determining my fate. The signs are all pointing in the right direction – I had barely sat down in the waiting room after checking in at reception before my name appeared on the screen, summoning me into the blood room. As it popped up, I looked around me to make sure no other Daniel James Godley’s were standing up. It was just me. I made my way down the white corridor and knocked on the door.

One of my favourite nurses opened it, much to my delight. When you have had approximately 4 million blood tests, you start to understand the difference between a ‘good’ one and a ‘bad’ one. The good ones entail an uncomfortable prick of the skin, a minute of relative discomfort followed by a small shudder as you feel the needle being pulled out and replaced by cotton wool being pressed against your skin. The bad ones entail a wrench of pain as the needle is pushed too deeply into the arm, followed by a minute of gritting your teeth as an unsteady hand vibrates the needle, switching between the few vials of blood used during the extraction, followed by a twinge of pain as the needle is jolted back out. The good ones don’t leave much of a mark; the bad ones can leave a deep bruise for as long as a week, and can even leave your arm hurting when you fully extend it. One time I could barely move my arm for 3 days because it hurt so much after a particularly bad blood test. This nurse was firmly in the ‘good’ category, which makes the whole experience far more pleasant.

The deed was over quickly and with relative ease. As I sat there holding the cotton wool on my arm to stop the bleeding, another one of the nurses came in, who I also had a good relationship with. She had counselled me a few weeks earlier as I sat with my head in my hands during treatment, complaining that I couldn’t do it anymore and that I was feeling too overwhelmed. She had spent a good 10 minutes sitting next to me, encouraging me to fight on and reminding me of all the good things in my life – my wife, my puppy and my new found love for baking; the nurses particularly enjoyed the spoils of that last one.

“Dan! How are you doing? Are you feeling better?” She asked, as she picked up a few vials of blood and put them into bags.

“Much better thank you. I’m finally starting to recover from the treatment,” I responded. I then made reference to the blood nurse being one of my favourites. During my response, I said what I thought was the blood nurse’s name, which I immediately regretted, as I got a streak of insecurity in my head as the word came out of my mouth.

“Was her name ‘Aileen’?” I thought to myself, as I said ‘Aileen’. Something didn’t feel right about it. Her name is actually Elaine, which I confirmed by looking at her name badge in that exact second as I uttered the wrong name, so I wasn’t far off, but I still felt horrifically embarrassed. This particular nurse had asked me how my son was two weeks earlier, and I had to tell her that I don’t have a son, so that does make me feel a little better. No one mentioned that I had gotten her name wrong in this situation, though, and I wondered whether to make a joke of it. The moment had passed, and the conversation quickly moved on. It seems we are drawn 1 – 1 on awkward social faux pas – I got her name slightly wrong and she thought I had a son. Luckily, this should be the last blood test I have to do for a few months, so she won’t get the opportunity to punish me for a while. Hopefully, by then, she will have forgotten.

Now, I have a long 24 hours of waiting before I find out the full scan results. It is always painful being at the hospital waiting for scan results. The oncologists at The Christie are overprescribed with the number of patients they have, and there are almost always significant delays with the face to face appointments. As a result, you arrive for a meeting at 14:00, but frequently find yourself not being called into a room for at least an hour, if not longer. Then, you are taken into a room where a nurse takes your observations – blood pressure, heartbeat, height, weight – before being asked to wait for the doctor. That can entail another hour of waiting, only in a private room. Every time you hear footsteps approaching the door, your breath deepens and your heart sits in your mouth. Then you watch as a person walks past the room, and you let out a big gasp of air, before repeating the whole process again and again and again before you finally hear that fateful knock. It is painful – I’m not sure I’ll ever get used to it.

Perhaps the universe was trying to send me a message when Waiting Around to Die came on one of my Spotify playlists this morning as I made my way to the hospital to do bloods. I sat listening to the lyrics, and it oddly made me smile. I thought about myself waiting around at the hospital, straining over every minute that my name didn’t appear on the screen, summoning me into the office to learn of my fate. I thought about going through the whole process tomorrow when so much is at stake. If I am clear of any signs of cancer tomorrow, I can start to plan my move back to London, start seeing friends and start making concrete plans again.

There are so many simple things in life that we take for granted when we are healthy. Over the past year, I’ve barely been able to plan beyond the next 7 days with any certainty. There is always the chance that you’ll have a bad day or week on the chemotherapy, or that a scan will reveal some new devastating truth, which you’ll then have to contend with; whether that means more treatment, or that no treatment will suffice to save you, it carries with it an enormous weight. To have that weight lifted seems almost… unfathomable. I cannot wait to finally fathom it.

Of course, then I’ll have to attend these scans every 3 months for the first 2 years. After that, it’ll change to every 6 months. Then, if I make it all the way to 5 years without a reoccurance, it will change to once a year. That is a fairly daunting prospect, but I’ll have plenty of life to keep me busy in between. That is all we can really do with our free time – look to stay busy, finding things that best occupy and satisfy us. I’ve been writing a few special pieces recently that I’ve been really enjoying; I’m going to keep writing and see where it takes me – hopefully, as my energy grows and I feel stronger, I’ll find even more energy to put into it.

Still, I have another 24 hours of waiting to go before I find out what the scan results say. I’m getting ahead of myself and assuming the scan results will be positive again… Perhaps I will try and cook something nice tonight, or bake something to give to the oncologists tomorrow – they can’t give me bad news if I bribe them, can they? Whatever I decide to do, I need to do something. It is all better than waiting around to die – right?

Mouth Ulcers and The End of Chemotherapy

25th January 2023 godley93Blog, Cancer, Chemotherapy, Health, Hospital, Lifestyle, Massage, Nurse, Pancreatic Cancer, Positivity, Recovery, Treatment, Ulcers11 Comments

The Chemotherapy Diaries

I thought I’d left my abusive relationship with mouth ulcers in the past… the mouth ulcers had another thing in mind. They decided to come back in force and ruin my victory lap week with the mop-up treatment. Rather than being excited about reaching the end of my journey with chemotherapy, I spent the past week in bed, struggling to eat, and even struggling to talk.

The issues started last week on Monday. It seems strange how they form, and I’m not sure if they form differently on chemotherapy, or if I just haven’t had enough in my life prior to being on treatment for cancer to know, but it seems to be different to how I remember it. I know I’m about to get mouth ulcers because my mouth just starts feeling strangely sensitive. All of a sudden, a hint of paprika in a tomato sauce results in my cheeks and tongue feeling hot and irritable. I’ll sit there after the mildest of chilli meals and find my mouth pulsating with discomfort.

“I think more mouth ulcers are coming,” I announce to my wife, with a combination of bitter amusement and familiar disdain. The sentence sounds like a naive plot thread in a horror movie, where the protagonist announces that they’re happy that they live in the safest town in their country, minutes before a gang of weapon-wielding maniacs descend on it with masks on and a vengeance against middle-class bullshitery. In my case, I use the word ‘think‘ as a sign of optimism that perhaps the ulcers won’t materialise, and that my mouth may just be a little sensitive that day. Usually, I wake up the next day to find that optimism to be entirely unfounded, and the ulcers have spread themselves throughout my mouth in the most awkward and painful of places.

This time was particularly bad, though. I couldn’t even drink water from Tuesday to Friday without it causing my mouth to sting so intensely that I’d question whether the government had replaced the local water source with hydrochloric acid. It was Thursday night that I decided to finally call The Christie hotline and report the problem to my oncology team. I was still taking the chemotherapy tablets twice a day at this point and had been for my last infusion on the Tuesday, when it had all started to kick off, so the chemotherapy was rife in my system.

Before the final infusion, I reported the problem to my nurse during the standard pre-treatment survey. She had manoeuvred one of the large extendable lights attached to the wall behind the bed into a position to investigate the contents of my mouth.

“Oh, the back of your mouth is very swollen. Your tongue looks very painful too. They are rather excessive, aren’t they?”

“Yeah. I’m struggling to talk because the ones on my tongue are constantly scraping against my teeth towards the back of my mouth. Opening my mouth is hard because the ones at the back of my cheek strain when I do.” You’re probably reading those sentences in too normal a fashion for how I was enunciating my words at this time. Imagine someone with a lisp who, for whatever strange reason, also can’t open their mouth properly, reading the sentence to you. Looking back, it makes me laugh quite a lot, but I didn’t see anyone laughing around me at the time. What a waste of a painfully funny situation. Another rather funny event that occurred during my final infusion was me receiving a foot massage.

I’d had a minor breakdown at treatment during my first session of the final cycle, and the nurse had referred me to the hospital’s Macmillan team. The next week, during session 2, one of their specialists had come to visit me to talk me through techniques to implement when I’m feeling overwhelmed, as well as services that her team can offer to patients. One of these services was a foot massage during treatment, which is said to help lower the effects of nausea, which I was experiencing in abundance during my sessions at the hospital.

It wasn’t actually the treatment itself causing this, but the smell of the ward. I think it has finally happened that I now associate the smell of antiseptic cleaning products with the horrible effects of chemotherapy, and the experiences familiar to me during the delivery of treatment at the hospital. These include, and I apologise in advance for the amount of toilet-based issues listed, but it is the reality of being on chemotherapy: chronic diarrhoea, blood in my faeces, throwing up whilst sitting on the toilet, sweating profusely, the room spinning around whether my eyes are open or not, going white as a sheet, and my extremities freezing solid, so I cannot bend, or even feel them, which is incredibly painful and irritating.

I declined the foot massage that week, stating that it was a nice gesture but that I am nearly at the end of my treatment, and that I’d made it this far without them, so I’d soldier on. The Macmillan representative was so lovely. She encouraged me to accept it and said that it is really therapeutic, but I felt far too English and awkward about the whole thing. Also, my feet are the part of my body that I am most self-conscious of, as I used to run a lot of ultra-marathons, which isn’t usually indicative of nice-looking feet. Mine certainly fall into the category of ‘That guy likes to run marathons’, and I haven’t even run one for well over a year.

But, during my interview at the start of session 3, cycle 3, the Macmillan representative had come back to see me, and it just happened to be during the nurse’s inspection of my mouth.

“Other than the mouth ulcers, have you had any other symptoms that have been bothering you?” the nurse asked.

“I’m still struggling with nausea, and just generally feeling wiped out. I really struggle to get out of bed at the minute, and I barely leave the house at all,” I replied.

The nurse turned to the Macmillan representative and said the following:

“Do you think we can give him a foot massage to try and help his nausea?”

I’d been rumbled. Had these two planned this? What a deviant, awful, lovely pair of people. How dare they assassinate me with their good nature. How am I going to wriggle out of this one?

“That’d be great – are you Ok with that, Dan? I know you weren’t so keen on it last week,” the Macmillan representative said to me.

Both their eyes were locked on mine; I felt the weight of expectation.

“Ok, sure. That’d be lovely. Thank you,” I said, defeated, and still struggling to pronounce my words properly because of the mouth ulcers.

If you are on treatment and are offered a foot massage, I only have one thing to say to you – do it! The Macmillan representative used the electric remote on my chemotherapy chair to elevate my legs straight in front of me, then placed herself at the end of the bed. She put a lovely white towel under my feet and curved the ends of it around each ankle. She then proceeded to cover my feet in ACTUAL OIL, and softly massaged my feet, whilst chatting to me about everything that was getting me down – acknowledging the trauma that I have been through, the difficulty of the cancer that I am fighting against, and how hard it must be to readjust to my present life, compared to my old one.

The whole experience was absolutely wonderful, and it really put into perspective how important the work is that Macmillan do. What an incredible organisation and, in particular, what a wonderful individual she is. I wish I could shout her out by name in this post, but I’m not sure how ethical that would be, so I won’t. I hope this gets back to her somehow so she can read how much I enjoyed the experience, and how grateful I am for it. Anyway, this post has turned far too positive, lets get back to my week of hell with the mouth ulcers.

As I said, I spent Tuesday to Friday mostly in bed, consuming very little in the form of food or water, and struggling to do much more than sulk. Talking was very painful, and no amount of the hospital-issued mouthwash, or Iglu gel that I put on the ulcers to try and relieve them, was doing much to alleviate the issue. I was still taking the chemotherapy tablets throughout this time, but I was feeling incredibly weak and sick, and I decided it had all become too much. I’d taken to sleeping on the bathroom floor a few times during these 3 days as I was getting such bad abdominal pains and bouts of nausea, that I was worried I wouldn’t make it to the toilet in time from my bedroom if I stayed there. A few times, this proved to be a good idea, and I learnt that my favourite place in the upstairs bathroom was assuming the fetal position on a small rug placed in front of the radiator.

One time, I had been rudely woken up by my wife banging on the door, telling me that dinner was ready downstairs. Dinner? Can one not assume the fetal position on the bathroom floor in peace these days? Unbelievable. I can’t eat anyway – what good is dinner to me?

The Christie hotline wanted me to go into the hospital to be reviewed, as they were worried about a few of my symptoms. My temperature was 37.7, which is right on the border of ‘high risk’. A high temperature can be the earliest sign of infection, so patients are advised to regularly check their temperature whilst they are receiving chemotherapy treatment. The advisor was worried that some of my mouth ulcers may be infected. On top of this, the fact that I was struggling to consume liquids, and had been suffering from bad diarrhoea all week, added to their concern.

I was pretty sure that I didn’t have an infection, though. My theory about the high-ish temperature is that I was taking the reading using an oral thermometer and that my tongue and mouth were very swollen, which would probably be skewing the temperature reading. I didn’t feel like I had any symptoms of flu, which usually indicates that the body is struggling with fighting an infection, and none of the ulcers looked infected to me.

It was nearly midnight at this point, and The Christie is nearly an hour away from me. That would mean an hour to get there, a few hours there having blood tests done, and being put on routine fluids, and then another hour back home. If I was genuinely concerned that something bigger was going on, I would have been happy to do this, but I wasn’t convinced that it was. I gently refused and asked if I could arrange to see the GP the following day instead. The representative reluctantly agreed but said that she would call me back an hour later for another temperature reading, and if it remained the same or increased, insisted that I would have to either go to The Christie or to my local A&E to be checked out. The suggestion that I may go to my local A&E over The Chrstie made me giggle.

“If I need to go anywhere, I’ll come to The Christie. I’m not stupid enough to go to my local A&E anymore – I’ve made that mistake a few too many times over the last year.” That thought cheered me up momentarily. Who would voluntarily go to an A&E in the UK? They’re notorious hell-holes where, if you manage to get out within 5 hours of arriving, you feel like you’ve been blessed by the gods. At A&E you are treated like a problem; I’d rather book a plane ticket to be seen at The Christie than drive to an A&E that is 20 minutes away from me. The overall time it would take to resolve the issue would still fall in favour of The Christie anyway, even if it included navigating airport security, sitting through a flight, the awkward bag collection on the other side, then the mandatory coffee stop before leaving the airport. I once sat in A&E throwing up for 9 hours before speaking a single word to an actual doctor, and that was during my recovery from major surgery last year.

An hour later, my temperature was 37.4. Good, it was dropping. She was happy to let me stay at home, so long as I got an appointment the following day.

In the morning, The Christie hotline diligently called me to see how I was getting on. They had been far sharper than I had that morning, as I had had one of my typical chemotherapy mornings, where I could barely move a limb for how bad I felt.

“Hi, Dan. It’s the hotline here – we wanted to confirm that you have an appointment to see the GP today?” The advisor asked me.

I broke out into a thousand excuses, but the central point was – no, I didn’t book an appointment, and it was now 10:30, and all appointment slots will have probably gone. She asked me to try to get one, and then get back to them once I either had an appointment or learnt that I could not get one, so they could help to arrange an alternative.

Lucky for me, I called my GP and explained the situation, and they offered me a slot at 17:00, only available because a patient had cancelled. I assume that this patient had originally accepted the appointment, only to realise that it cut into their Friday night pub time, which had convinced them that whatever was wrong with them really wasn’t that bad and that it is probably normal for men to have dry testicles that are covered in flaky skin. No idea where that came from… you’d think I was projecting, but I promise I’m not… Anyway, I snapped the appointment up but was concerned that the advisor on the hotline would not be on shift anymore by the time I had seen the doctor, so I wouldn’t be able to report back the outcome of the appointment. Rather than proactively do anything about this concern, I returned to my position under my quilt, falling in and out of sleep until the fateful time came to attend the appointment.

The GP looked at my mouth ulcers and confirmed that none of them looked infected, but said he would give me some steroid mouthwash to encourage them to clear up quicker. He then looked at the results of a recent blood test I’d had at the GP, due to some standard screening procedures for diabetic patients, which I am.

“One of your liver functioning tests is rather high – are you a big drinker?” The GP asked.

I sat there stunned for a second before responding, trying not to sound too condescending or annoyed.

“Erm, no. I believe it is due to all the chemotherapy I’ve been on. I have pancreatic cancer.” I couldn’t help but be a little stern in my tone.

“Oh, of course. Sorry,” he responded, before talking to me a little about how the treatment was going, and how long I had left on it. He was a nice guy – it had probably been a long week.

The steroid mouthwash lasted for 5 days and seemed to do very little. My mouth ulcers are still going strong, though I am managing to eat more. Some recipes I’ve taken a particular liking to are overdone pasta with homemade pesto, a mild daal and, of course, soup – a classic ‘I’m ill and everyone should feel sorry for me‘ meal.

On a more positive note, I woke up today feeling better than I have in weeks. Instead of being greeted by a piercing headache and heavy limbs, I woke up at 8:00am and felt… kind of, Ok? I’ve gotten so used to the first feeling that I wake up to being anguish, as if I spent last night downing straight vodka from the bottle before being hit by a double-decker bus, that anything remotely more positive than this feels like a breakthrough.

In the Wet Leg song ‘Ur Mom’, there is a break in the song where the singer sings the following lines:

Okay, I’ve been practising my longest and loudest scream
Okay, here we go
One, two, three

She then proceeds to scream for an impressive amount of time. It is very random, fun, and the sort of tongue-in-cheek thing that you start to expect from their music after listening to a few of their songs (the song ‘Chaise Longue’ is a prime example of their lyrical good humour). I like to think, if I had written the song ‘Ur Mum’, I would have channelled my anger at mouth ulcers whilst producing that scream. It brings me some pleasure to imagine that was her inspiration as I listen to the song, but it almost certainly wasn’t.

So, to finish off this post – fuck you mouth ulcers, and fuck you, chemotherapy. You can both do one forever. I’m hoping that I am done with you for good, but live in trepidation that my oncology team will tell me that I have to resume taking the chemotherapy tablets until the full course is complete, which would mean another 5 days of tablets to come. I’m purposefully avoiding calling the hotline back to tell them that I’ve completed the course of steroid mouthwash given to me by the GP, as I am assuming they will advise me to now continue the course of chemotherapy tablets.

Can I just say “no” at this point? Will 5 more days of pills really stop whatever may happen from happening? I seriously doubt it. It would give my mouth ulcers more opportunity to thrive, though, and they only need half an excuse to kick off a violent party in my mouth. They’re still at it now, even after 5 days of steroid treatment. If anything, I think the steroids just encouraged them.

Who’s side are these oncologists on, anyway? I’m starting to think they’re funded by mouth ulcers.

I’ve told myself that I have to call the hotline this afternoon to talk about whether I have to resume the treatment, like a real adult. It is so hard not to ignore your problems when ignoring them does, kind of, make them go away.

November 8th, 2021

27th November 202227th November 2022 godley93Blog, Cancer, Chemotherapy, Health, Lifestyle, Pancreatic Cancer, Positivity, Recovery, Treatment17 Comments

The Road to Recovery

In Jordan, With the Wonderful Bride and Groom

It feels like a lot has happened since I last posted. I’ve been abroad for the first time since before the pandemic, I’ve completed the first cycle of chemotherapy and have now started cycle 2. I also marked the 1 year anniversary of my cancer diagnosis on November 8th – a scary yet momentous feat. Unfortunately, I didn’t manage to celebrate it with the same bravado that I was throwing at the cancer diagnosis this time last year.

The anniversary is a strange one. We didn’t throw a party with a huge ‘1 Year’ banner, or bake a cake with ‘Congratulations’ written across it. What is the appropriate way to celebrate your 1 year anniversary since being diagnosed with cancer? If it was my 1 year anniversary of getting rid of cancer, I may feel differently. That isn’t the case, though. This period has conjured up a mix of emotions in me, most of them negative. I wish I could shake those feelings, but I’m struggling to.

On the night of my diagnosis in King’s hospital, I remember sitting awake with Anna asleep next to me. As she slept, I sat staring at the ceiling. Throughout my life, I had been prone to thinking about the future and what it may hold for me. When I was younger, I would sit and wonder what I’d be doing a year from now at that exact second. In school, I would wonder if I’d have a new girlfriend or if I’d have done well in the end-of-year exams. As I got older, I thought about it less, but sometimes I would still entertain those thoughts. While living in Philadelphia, I’d wonder if I’d still be there or if I’d have gone back to the UK. It was a way of gaining some perspective on what was going on in my life, and it helped me appreciate the things that I enjoyed or didn’t enjoy about my current circumstances. The things that I fantasised about being different would usually be things that weren’t particularly working for me, and the things I hoped would have stayed the same, or developed further, were things that I was feeling content with.

As I lay staring at the hospital ceiling on the night of my diagnosis, I wondered whether I would even be alive a year from that moment. If I was, would I be happy that I was still alive? What if the cancer was out of control, and I was navigating a dark road to my ultimate end. I remember taking a deep breath, trying to be quiet as possible as I sat crying with Anna beside me, not wanting to wake her up. That night, we had expressed we had each other and that whatever happened next, we needed to spend it together and make sure we were happy. We’ve kept that promise so far.

It is strange being where I am now. The operation went far better than expected, which I am incredibly grateful for. That doesn’t change the fact that my life is a lot different now, though, and it will never return to the way it was. Without a pancreas, I am now diabetic in a way that I believe is much harder to manage. As far as I understand, the pancreas is not only responsible for producing insulin and regulating the body’s blood sugar levels, but it also plays a key role in regulating the hormones which control these processes. Without a pancreas, I have less control over those hormones. Some days I just cannot get my blood sugar to play ball at all. Some nights, my low blood sugar alarm will go off multiple times. Every so often, I’ll sleep through the first alarm and only wake up when I feel incredibly light-headed, with my legs shaking and a cold sweat starting to form on my brow. Sometimes, I’ll then sit there and wonder why the chemotherapy is deciding to wreak havoc on me at that moment before realising that my blood sugar is low. I’m still very new to diabetes, so the thoughts don’t always come naturally to me. I’ve gotten very good at having a broken night of sleep, and often have to eat fruit pastels at 4:00am to get my blood sugar up. Some people may think that is heaven, but it is far more annoying when you actually have to do it. I also have to clean my teeth after doing this, or I imagine my teeth rotting through the night and it stops me sleeping. Some nights I have cleaned my teeth 4 or 5 times because my blood sugar keeps going low.

I’ve tried to write a post about the anniversary of my diagnosis about 6 times over the past few weeks. The first draft was almost fully formed, and I was ready to post it on the day of the anniversary, but as I read through it, I didn’t feel comfortable sharing it. There was a lot of emotion in it, and I could tell that my head wasn’t in a good place. I wasn’t sure it was the sentiment I wanted to put out into the world for critical review. A few days later, I tried to rewrite it, but I found myself pulling every word I wrote to pieces. For some reason, I was being extremely critical of what I was writing. The language was too flowery, or I was dancing around my central point too much. At one point, I deleted 5 drafts at once, not even bothering to read their contents before doing so. The experience has really affected my motivation to write.

Perhaps linked to this self-critical attitude is my mentality toward starting the second cycle of chemotherapy. I started again on Tuesday, 15th November. The day before this, I had to go and do my blood test, as is standard before every treatment day, to ensure that the body is ready to handle another dose of poison. I sat in the waiting room at the hospital, keeping an eye on the appointment board and dreading my name appearing. Once my name was called, I made my way down the corridor and into the bloods office. I hung my coat up and sat down in the chair. “How are you doing today, Daniel?” the nurse asked me. She wasn’t ready for what was coming; I don’t think I was. The next 5 minutes was taken up by me talking about how I’m worn out, that I’m reaching total mental fatigue with the treatment, and that I don’t even feel confident it’ll increase my chances of survival, as that was what the oncologist had warned me about mop-up chemotherapy when he introduced me to the idea. They have not done the research to prove or disprove whether it was useful, but they tend to do it anyway, he had explained to me. It was the perfect distraction from the needle being pushed into my vein, but it highlighted that my head was not in a good place. The nurse was lovely and understanding. She punctuated my rant with encouraging comments like “you’re so close to the end” and “everyone goes through tough periods with treatment.”

One of the sticking points for me around the anniversary has been that a year ago, I genuinely didn’t believe that I’d survive this cancer. Now, I have a better shot at survival than I ever could have dreamt of then, so why am I responding like this now? I feel like I had more positivity to offer myself last year, when everything felt bleak and the road to recovery seemed insurmountable. I told the nurse that I felt like a spoilt child complaining about the position I’m in after having a successful surgery and being so close to being classed as ‘in remission’. It is a privileged spot to be in and one that the majority of people with pancreatic cancer don’t get to experience. I’m sure that I read recently that 50% of people diagnosed with pancreatic cancer are dead within 3 months of diagnosis; thinking about that just makes me feel even worse for complaining about the situation I’m in. “You can’t control the way you feel, Dan. Don’t be so hard on yourself.” I knew that the nurse was right in saying this, but it did little to pick up my mood.

The week before I returned to treatment, I had been in Jordan on holiday. One of my best friends is Jordanian, and we went over there to attend his wedding. We spent 7 days in the country, mostly in the capital Amman, but we also travelled around a little bit. Of course, we went to see the awe-inspiring Petra, but we also spent a night in the desert at Wadi Rum, and another night at the Dead Sea.

The trip had been causing me a fair amount of anxiety in the buildup to it – it was the first time I was going abroad since before Covid but, more importantly, since being diagnosed. Now, when I go abroad, I have a truckload of drugs to take with me, as well as my various needles used to treat diabetes. It was too easy to envision a situation where I lose all of my stock of Creon, a critical drug I need when eating, or leave my diabetes pens somewhere, or the airline loses my luggage which contains all of my backup stock. I fantasised about going through security in Jordan, only to be stopped and accused of bringing in illegal drugs. Of course, I waltzed through without anyone even batting an eyelid at me. You are your own worst enemy.

Jordan contains many sites that are incredibly old, with amazing structures that have stood for millennia. Some of the artefacts that we saw in the museums were nearly 4000 years old. It is mind-boggling. As I stood in a small museum on the site of the Amman Citidel, I observed a small skeleton through the glass. The information card in front of it stated that it was a child’s skeleton and that it used to be tradition, if your child died, to put their corpse into a jar, then keep it under the floor. I had one of those moments where all of my concerns and dissatisfactions with the world felt infantile and pathetic; I’m only bones, after all. It used to be common for children to simply die during birth, along with their mother. Why am I so precious about my life? What do I even add to the world? I haven’t cured any individuals of disease or given up my time to help those in need. It did little to improve my mood, but the whole experience was inspiring. I’m sure on another day I would have taken a very different message from it, but I was feeling egotistical and sorry for myself that day. It was more fuel to throw on the ‘woe is me’ fire.

One of the most amazing things we did in Jordan was visiting the Dead Sea. It is quite a beautiful shade of blue, and as we sat in the car driving along a road which framed it, I couldn’t help but be taken in by its glimmer. The sensation when you are in it isn’t like anything I’ve experienced before. It pushes you upwards, so much so that if you lean to one side and throw off the balance of your body, it will force you onto your front. We had Googled whether any life existed in it earlier that day and learnt that life cannot be supported in it due to its high salt content. It is hard to believe that a body of water that large contains no life at all. My hatred of the sea is due to the fact that I know there could be things lurking around me in the murky water; it makes my skin crawl. As I floated in the Dead Sea, I couldn’t kick the idea that there was a leviathan lurking at the bottom of that lake, waiting for the day that Daniel Godley, from England, made his way into the water for a casual dip. No Leviathan ever showed up. Perhaps they heard me saying to Anna, “we’ve got to come back next year,” and decided to wait until then to reveal itself to the world, as it ate me up. I did lose my wedding ring in the water too – perhaps the offering was enough to buy me some time. I made the point to Anna that I am now single, all before the big wedding that we were due to attend at the end of the holiday – what a result! She wasn’t too impressed.

The Jordan trip was mostly amazing, but there were a few incidents which kept me anxious. I’m prone to random (incredibly painful) attacks of abdominal pain and stomach issues. Of course, one of these incidents came as I navigated the old tombs of Petra. The toilets at this site are far from good. I think that referring to them as a sleight against human decency is a more accurate description of them. Despite this, I was forced to sit in one of them whilst I gagged into a dry toilet basin, piss surrounding me on the floor and a man trying to sell ‘ancient rocks’ within earshot, on the outside. The whole scene did little to make me feel better, and in that moment, I swore that when I return to my house in England, I’ll never leave it again.

There was another day in Amman where we had walked around the markets for a few hours and were now ascending a hill to see a famous street called Rainbow Street. As we made our way up the stairway to heaven (it went on as far as the eye could see and felt genuinely insurmountable if you dared look up as you climbed it), I started to get bad stomach pains. Once we got to the top, I decided that I needed to find a toilet and fast.

We went into a small coffee shop and asked if there was a toilet. The man warned me that it wasn’t in good shape but agreed to let me use it. He unlocked a door to the side of the counter and didn’t make eye contact with me as I entered. He knew he was stitching me up; he had tried to warn me. I shut the door behind me, then turned to look at the room. The sink was not connected to a drain, and there was half a mop was lying across the floor (who knew where the other half was). The whole room was thick with the smell of cigarette smoke, and everything was damp. As I lifted up the toilet, I took a deep breath. The water, if it indeed was water at all, was black, and there were 5 cigarette ends floating in it. That explained the thick stench of cigarette smoke, at least. I immediately dropped the toilet seat shut and decided that I’d rather shit myself than spend another second in there. I ran out, passed Anna, who was standing ordering a drink, thanked the man, and proceeded to run around Rainbow Street, looking for a respectable alternative. Luckily, I found one.

I think the trip to Jordan has added to my mental burnout now with the treatment. My oncology team had agreed to give me an extra week off to allow me to go on the trip, so I’d had 2 weeks off treatment, as opposed to the 1 week that was in the plan. It took most of week 1 to get rid of the mouth ulcers and stop feeling a constant level of sickness. A little like a school child who has been off for the summer holidays and is now resentful that they have to return to school, I feel resentful that I am back on treatment. On top of that, I really do feel one of the worst that I have ever felt during chemotherapy. Every morning I struggle to get out of bed, and I am regularly getting migraines. After eating, I often feel sick, and there is an iron taste of blood which lingers in my mouth after I take the chemotherapy tablets. I try brushing my teeth, and it relieves it for a while, but then the taste fights back, and I am left with an irony, mint taste that makes me feel even worse.

When I went for treatment on Tuesday, I couldn’t help but think about the needle being pushed into the port in my chest. The whole thing made me feel anxious in a way that it hasn’t since I first started chemotherapy a year ago. When you look at the needle in the nurse’s hand, it looks quite long. I’d learnt to not focus on it and to look away, but here I was, driving to chemotherapy, fantasising about the size of it. I thought about the sharp shot of pain that bolts through the chest plate as it enters the skin, then the momentary flash of heat that seems to rush through your body. I didn’t feel ready for it. In my mind, I contemplated how I could get out of doing the treatment. Perhaps I could tell them that I have Covid. I knew that it would just be delaying the inevitable, though, and that I’d only be deferring the uncomfortable for another week. It was going to catch up with me eventually.

I’m trying to remember how broken I probably was a year ago from now, yet how much better my attitude was then. I would have been 1 or 2 sessions into Folfirinox with an unknown outcome and an uncertain future. Part of me thinks that I should start going back to the blog posts that I wrote a year ago today to remind myself of how much better my attitude was then under much more difficult circumstances. The thing stopping me is that I worry I’ll only focus on the things that I don’t like about my writing and that it won’t actually help me gain any perspective at all. I can’t stop thinking of the quote – ‘Life is wasted on the living’. When I was certain I was going to die last year, I felt more energised and motivated to enjoy life than ever. As soon as I feel more comfortable in the situation, I find myself moping around and complaining about my treatment schedule, and taking every bout of illness to heart, as if it is the end of the world.

The fact is that I’ve been doing this for a year now, and although every treatment step is designed to ultimately make me better in the long run, they all actually make me feel worse in the short term. Every session of chemotherapy leaves my body more run down than the last; the surgery has taken months to overcome, and in many ways, I am still struggling to fight back from it. I felt well enough to run throughout my original sessions of chemotherapy, but I haven’t managed to run at all since the surgery. There has been very little respite in the process. The burnout is becoming tangible. I feel like a drag to be around. I want there to be a button I can press to fast foward the next 2 months. Such a thing doesn’t exist, and I am conscious that you should never wish your life away, so I’ll keep pressing on. Just another 6 weeks or so, then I can focus on getting on with my life – so long as the post-chemotherapy scans don’t throw any curveballs in the mix… I can’t be positive without countering it with something negative at the minute, can I?

The Last Throes of Treatment

13th October 2022 godley93Blog, Cancer, Chemotherapy, Dachshund, Health, Lifestyle, Miniature Dachshund, Pancreatic Cancer, Positivity, Puppy, Recovery, Sausage Dog, Treatment8 Comments

From now on, I think October will always be a weird time for me. It is that period when the days start getting shorter, and all of the enthusiasm of the summer sun is waning. I didn’t use to mind the shorter days; winter was actually my favourite time of year when I was younger. Me and my friends used to hang out together when we were teenagers in the local parks, and it was fun when it was darker. You felt inconspicuous. Nowadays, I realise that we probably looked intimidating, but we mostly stayed out of people’s way. There wasn’t a lot to do in the village we’re from, so standing around in parks felt like a pretty normal pastime.

Unfortunately, October is now known to me as the month where I was in and out of hospitals, trying to get the sudden sickness that had come over me diagnosed. It started out with me reluctantly going to A&E, knowing that it’d take away an entire evening of my precious life. Then it extended to a week of blood appointments and scans. Then a referral to another hospital with a more specialised Hepato-Pancreato-Biliary (HPB) unit. After 3 weeks of this, I’d been told that I had cancer but that it was a very slow-growing and non-aggressive cancer, which felt comforting. Another week passed; the diagnosis was wrong. By the start of November, I was learning the true extent of the issue. Pancreatic Cancer. You never think it’ll happen to you, but here I was. It was happening.

I’d be lying if I said that it does not feel significant to be sat here a year on. I remember attending the hospital throughout October and wondering when it was finally going to be over. I remember the first time I picked up a prescription for a drug called Creon – the enzyme replacement treatment that I am now all too comfortable with. At the time, the specialist told me that it might help to reduce the amount of pain I was experiencing in my abdomen. He told me to take one before and after each meal. I had no idea that I’d end up taking around 20 – 30 of those tablets a day. At the time, I think they believed my pancreatic functioning to be a little low, meaning I only needed a small amount of enzyme replacement therapy. Now, I have no pancreas at all, so all I have is enzyme replacement therapy. I constantly have to battle with the local pharmacies for more of the drug because I use so much of it, and they seem reluctant to stock too much of it. Perhaps the town I live in is full of people suffering from pancreatic issues. Maybe they should start testing the water and sorting out the issue – there isn’t enough Creon in this town for all of us. I hope I get priority as the flagbearer of pancreatic cancer (a title I have definitely assigned to myself and do not deserve based on any reasonable definition of ‘merit’).

It didn’t even occur to me last October that I might end up a diabetic, need major surgery, or have to do 6 months of chemotherapy. I was still assuming that it would be a quick fix – even if that was some sort of minor surgery. You don’t think you’re likely to have cancer when you’ve been running marathons like I had been doing throughout September. You just assume that people with cancer feel different, that their bodies can’t cope with the stress of training for more extreme fitness events. Unfortunately, they can. Bodies are resilient. So are human emotions of denial, especially where that denial can preserve one’s sense of normality. Going to the hospital was a concrete admission that something was wrong. I told myself that it was a food intolerance causing me pain. I told myself that it was minor and that it didn’t require further attention. The few times I did try and get diagnosed, I felt like I was making a mound out of a molehill; I wasn’t taken particularly seriously by any of the medical professionals I saw. That reinforced the feelings of inadequacy – inadequate to be taking away these people’s precious time; they could be seeing someone who really needs the attention, someone with cancer.

So, October drags on, and so does the treatment schedule. I’ve been back at the hospital to do bloods today before starting the mop-up chemotherapy tomorrow. The new treatment schedule is one consisting of 4-week cycles – 3 ‘on’ weeks and 1 ‘off’. On the on weeks I have a 30-minute infusion at the hospital and have to take chemotherapy tablets twice a day. On the ‘off’ weeks I forget about hospitals and get on with my life…until the next cycle starts, of course. The whole cycle repeats 3 times, and then I have to do another scan. Assuming that scan is clear, I’m then a free man! Until the next scan, then the next scan, but you get what I mean…

It means that The Chemotherapy Diaries series is going to have some new life breathed into it. Back by popular demand. I think I’ve probably had some of the biggest compliments on the blog from that series. Maybe the feelings that chemotherapy inspires are the exact point where cynicism meets defeatism, creating the perfect environment for comedy. Time to pick up my sick bucket and pull up my gloves again; the tingling fingers of a chemotherapy patient, tapping away on their phone, writing their blog where they moan about everything and don’t relent over anything. Oh please dear nurse, take more of my blood for I have no need for it. Shakespeare would have invented 500 words in 12 chemotherapy sessions; I barely managed to produce the ones I know. I usually sat with my head between my legs and my headphones on full blast. It was comforting until I got the inevitable tap on the shoulder from the nurse – “Are you sure you’re ok?” They’d say. “I’m fine. I always sit like this,” I’d respond, not moving my head from its brace position, still staring into the eternal void I’d created between my legs. Lovely, endless void, we meet again. That was always during bag number 2 – this time there is only bag number 1, and it’s only 30 minutes.

The cycle does sound much more manageable. It’s going to be interesting to see how much the mop-up chemotherapy affects my energy levels. They’ve been good recently – I’m working full time again, taking Lucy on regular walks and waking up relatively early without feeling devoid of all energy. The blog has been taking a hit now that I am working full-time again, but I’m figuring out how to create space for it in my more normal life. I’m finding myself staring at spreadsheets again instead of fawning over this word or that phrase. It’s been good, actually. I forgot how much personal triumph you can feel from working. When I have an idea about how to sort out a data problem that my team is having and I write the formula, then watch as I execute it and all problems are temporarily resolved in the world, I feel a rush of adrenaline. “This is living,” I think to myself as I take a sip from my coffee. Life is simple sometimes – Microsoft Excel offers refuge in the form of linear problems with linear answers. Dealing with chemotherapy doesn’t feel quite so linear.

Even the sickness I get after eating has been reduced. It is still a problem, but less so. Sometimes I manage to eat a meal without getting any sickness at all, though this is rare. The sickness is much more manageable even when it does happen. It’s more like an annoying voice in the back of my head telling me “you feel a bit bad after eating that sandwich for lunch, don’t you, Dan? Maybe you shouldn’t have put so much cheese on it, you pancreasless weasel.” Come to think of it, I should change my Twitter handle to Pancreasless Weasel. My Twitter account is far too serious currently.

The excitement at finding data solutions is yet another sign that my life is actually returning to normal. It’s crazy – I truly didn’t believe that things would ever get back to this place, or anything like this place. Despite knowing that I have another 5 years of regular scans before I can truly breathe, it feels like space is being created between the cancer and myself in my life. I’m starting to feel like someone who can talk formatively of cancer, not as someone suffering at the hands of it. No matter what happens in the next 5 years, I’ve gotten to a place which I didn’t even dare to dream of a few months ago. In the last 12 weeks alone I’ve come to be at peace with being diabetic, even finding the process quite fun. It is like a game that you are constantly involved in, yet have no choice over your involvement in it. It is similar to life itself in that regard, I guess, but the diabetes game comes with an app that has a nice graph and lots of statistics about how well you’re doing. Life doesn’t come with such an app. Perhaps I’ll try and create one.

Something that does feel somewhat significant is the fact that Lucy turned 1 at the end of September. We got her at around 8 weeks old, so the countdown is on to the 1 year anniversary of us first meeting her. She has enriched our lives so much. You really do see the best of the world when you spend time around a sausage dog. Seeing their impossibly long bodies bounding through the shortest of grass, yet making it look like a fully grown cornfield, is a comedy that you cannot really recreate any other way. I watched an interview with Christian Bale yesterday where he said “The best actors are children and animals because both don’t give a shit what anyone thinks about them,” and it is so true of Lucy. She is unapologetic in her approach to the world. I’ve spent so long feeling every negative and positive emotion under the sun this year. Everything has been intensified by what has been going on with the cancer. With a sort of end in sight, I’m beginning to get more perspective on everything and feel a sense of relief. As I start chemotherapy again tomorrow, I do so with a genuine end in sight. That certainly makes it easier. So does watching Lucy go about her life without any regard for the bigger picture. There is only this impulse or that desire. You can find plenty of lessons in watching a dog go about their day-to-day life of eating, pooing, sleeping, and repeating. Someone should turn that into a t-shirt or something.

It doesn’t make the month of October any easier to deal with, though. I will forever blame this time of year for punishing me as it did last year. I remember an unusual period of hanging around the flat after spending whole days at the hospital, not knowing what the future was going to hold for me, getting increasingly frustrated at the lack of concrete answers, and the growing anxiety that was building. Who knows what I was doing exactly 1 year ago this second. In a way, it is easier now that I understand the extent of the illness and that I have been through so much to try and fight it. Better the devil you know than the devil you don’t. I’m married now, and I’ve got a little not-so-puppy puppy that has just turned 1. Life is good, so let’s hope this next bout of chemotherapy is good too (and generates some juicy content for the blog).

Oh, and my mum has a little puppy sausage dog now too. So that’s got to generate some good pictures for the blog, right? Lucy keeps humping her which is a little disturbing but further proof that dogs really just don’t give a shit. She’s 9 weeks old, Lucy. Tone it down a bit…

Marathoner

6th October 2022 godley93Blog, Cancer, Charity, Fundraising, Health, Iron Man, Lifestyle, Marathon, Pancreatic Cancer, Positivity, Recovery, Surgery, TreatmentLeave a comment

Greg at the Iron Man World Championships

My slight insomnia seems more determined than ever right now, so I find myself starting writing this post at 00:30 on Monday morning. I spent Sunday attempting to support my eldest sister Becky as she ran the London marathon. My ‘attempt’ to support her wasn’t because I was not indeed supporting her through my thoughts and words, but because my physical attendance on the day was cut short due to some fairly routine stomach problems. It’s a shame as I came down to London this weekend specifically to support her on her big day, but after only managing to see her once at around the 13 mile mark, my stomach problems kicked in. I tried to persevere, but sometimes these issues aren’t down to perseverance, and I didn’t want to embarrass myself in central London, in front of my family and my new wife. That really would have been a test of our vows. ‘Bowels testing the vows’. What a horrible yet intriguing sentence. Perhaps it’d make a good play. Someone should write it.

Becky hasn’t run a marathon before and judging by her first message after finishing, I’m not sure she’ll be rushing to do another one. “Fuck am I ever doing that again,” read her first message in our family WhatsApp group. My dad isn’t a fan of swearing, so she must have really meant it. As we’ve gotten older, we’ve gotten lax with our swearing around our dad, but you could tell she really meant those words; it wasn’t just inflammatory for the sake of winding up my now retired dad (he’s finally officially a pensioner as of the close of business last Friday, despite actually taking his pension a few years ago).

Whether she does one again or not, it’s a huge achievement. I know people think every Godley has some natural trait which makes them able to do marathons at the drop of a hat, but it really isn’t true. Some of us go to pretty extreme lengths with our love of exercise – my brother, Greg, goes to extremely extreme extremes, but we’ll come back to that later. Becky isn’t typically one of them, though. She enjoys running to keep fit, but also enjoys actually having free time where she isn’t training. She also probably enjoys occasionally dressing up, having a few too many drinks and getting blisters from her nicer looking shoes, as opposed to already having them from running too many miles, too many times and over too many weekends. I hope she will get to indulge in a few of these now that the marathon is out of the way. She has earned it.

In all seriousness, she really isn’t one of the Godley’s who loves the punishment that comes with these more extreme events. Or she isn’t historically, anyway. Who knows where this will take her now… I know that people will think I’m being modest here, as I have completed quite a few marathons and even more ultramarathons, but I really do put myself in the same category as her in terms of natural ability. I don’t have a lot of natural ability with running, and I think she feels the same way. Any skill I had with running came from sheer determination. I just kept doing it and doing it and doing it, never getting loads faster, but managing to go a lot further. Each time I entered a new marathon, I told myself that this would be the one where I would do an impressive time, but it never really happened. At my first ever marathon, I finished with a time of 3hr 47, and I felt relatively happy, but I thought I could do better. The only other road marathon I completed was the Brighton marathon, and a combination of hot weather and having pancreatic cancer, but not knowing that I had pancreatic cancer, meant I finished with a less-than-impressive 4hr 3. The only thing that I consider quite impressive in my speed repertoire is my half marathon PB of 1hr 38, but this is still pretty slow for someone who trained as hard as I did. Ultramarathons were always more my thing – I could dig deep over distance, and that seemed to give me an edge. But anyway, this isn’t meant to be about me…

Becky may not love the punishment of a tough training schedule, and she may not have the natural speed and agility that my dad had, but she’s ran a marathon. In many ways, it is more impressive to see someone finish a marathon who is not a seasoned marathoner, than it is to watch someone complete their 40th marathon that year. The grit and determination that she showed to get over that finish line is admirable and inspiring. The fact that she also did the marathon in aid of The Christie, the cancer-specialist hospital that provide my oncology care and who have almost definitely extended my life considerably, if not actually saved it from the hands of pancreatic cancer, makes it even more special.

My surgeon told me that most oncology teams in the country, if not the world, would have told me that nothing further could be done based on my diagnosis (stage 3 pancreatic cancer, with an artery fully enclosed by the tumour) and the images produced by the CT scan post-chemotherapy. My specialist at The Christie recognises the limitations of these scans, however, and is an incredibly forward-thinking individual when it comes to the treatment of pancreatic cancer. He is an example of the excellence that The Christie has become associated with. That excellence attracts excellence, and that is how he became associated with my surgeon, Mr Nicola de´ Liguori. Together, their pioneering approach to treating pancreatic cancer, led to the full removal of the tumour, against all of the odds.

Where others would have accepted defeat, they pioneered an approach of calculated risk – daring to hope that by taking on that risk in major surgery, they might be able to generate a better result for me. They did, and I can’t thank them enough for it. Mr de´ Liguori specifically requested that I name him in my blog posts, as he wants to encourage this type of approach more often when treating pancreatic cancer. I’m unsure about my oncologist, and whether he would want me to speak about him by name, so I won’t name him specifically. Mr de´ Liguori has seen more people approaching him for a second opinion on scan results, and he wants this to continue. Many people don’t even realise that one can survive without a pancreas. My brother Freddie is the most recent person to experience this, as he told a friend in the pub that his brother had recently had his entire pancreas removed. “You must be wrong, Freddie. You can’t live without a pancreas,” his friend responded. Freddie then wondered whether he had got it wrong, or if I had even gotten it wrong and had misunderstood what had occurred in the surgery. Neither of us were wrong, though. It just isn’t common.

There are probably a lot of reasons that a total pancreatectomy is uncommon – sometimes the tumour is too established, and it wouldn’t save the patient’s life. Sometimes the cancer has already spread. I’ve seen it sighted online that it is the huge lifestyle changes post-surgery, with the patient being diabetic and needing enzyme replacement for life, that makes a total pancreatectomy an unattractive option. This last one intimidated me for weeks after the surgery, but I feel very differently about it now. The lifestyle changes are immaterial if it saves your life – I am proof of that; you can adapt very quickly, and all of the lifestyle changes just become normal. Far better than just dying. There are almost undoubtedly many cases where such an approach could save a patient’s life, or give them more valuable years. I’m lucky enough to have received treatment at two world-class hospitals, The Christie and Manchester Royal Infirmary. I’m about to start chemotherapy back at The Christie in a few weeks, and I’m extremely glad to be back under their care for what will hopefully be the last phase of my treatment for cancer.

Becky is just under £30 away from hitting her fundraising target, and it would mean the world to her if you could help push her over that goal. You can donate here if you are willing and able.

Becky Seeming a Little Delirious

My brother Greg seems to have far more natural ability in terms of speed and stamina than Becky and me. He gets that from my dad. I put myself far more in my mother’s camp – a person who has run a marathon in her day, and even did a few trail ultra marathons, but who did not indulge in a running schedule totalling an average of over 100 miles a week, acting like it was totally normal like my dad did when he was in his 20’s. Greg is definitely following in my dad’s footsteps. He may have even created his own footsteps on the path to self-damnation with his latest series of events, though.

In the past few weeks, Greg has challenged himself to 3 separate events. He has cycled from Inverness to Preston, done a double Iron Man (where you do twice the distance of the swim, bike and run) and he is currently in Hawaii to compete in the Iron Man world championship, after qualifying for his age category. I don’t really need to speak too much more about it all – the level of exercise that Greg is now engaged in is utterly ridiculous. There is a bittersweet element to watching him challenge himself in this way for me – I never really got into the Iron Man stuff, but we used to do a lot of ultra marathons together. I hope to get back to a place where we can do this together again, but I fear that I will forever be slowing him down now. Perhaps he needs slowing down a little bit, though.

Greg is raising money for Pancreatic Cancer Action, a charity who have helped me out a lot since being diagnosed. Their founder, Ali Stunt, is a 15+ year survivor of pancreatic cancer; that is not something you see very often. It would be easy to chalk this down to ‘luck’, but you start learning that there is more to these things than simple luck. Her determination to help others resulted in her setting up her charity and the work they do is so incredibly important to people like me. She has helped me out immensely throughout my treatment and continues to help me out now. I’m so grateful to her and her team for everything the have done for me, and am so happy that Greg has chosen to raise money for them.

Greg is a couple of hundred away from reaching his target – you can donate here if you would like to. The world championships are happening on Thursday in Hawaii, so be sure to check out the Just Giving page to find out how Greg does in the event.

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Diabetes for Dummies

Waitin’ Round to Die; Anticipating More Scan Results

The Road to Recovery

Mouth Ulcers and The End of Chemotherapy

The Chemotherapy Diaries

November 8th, 2021

The Road to Recovery

The Last Throes of Treatment

Marathoner