Emotion

On… Memory

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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…

Cancer: When “Young” Doesn’t Equate to “Fun”

godley93, , , , , , , , , , , , , , 4 Comments
At My Best Friend’s Wedding – 08.04.23

I originally wrote this with the intention of sending it to a few media outlets, but I never did and it has been sat in my drafts for a while, so I thought I’d just post it. Enjoy!

The English language has some interesting colloquialisms, especially around the concept of being young. Many of them aim to bestow wisdom upon the subject, such as the popular idiom “youth is wasted on the young”. Personally, I find the risqué ones more engaging, like “young, dumb and full of…”. I won’t finish it off, no pun intended.

I feel strange describing myself as young. Not because I don’t feel young, or even that I don’t consider myself to be young, but because I’ve heard so many nurses, doctors and oncologists use the word to describe me, that I have started to associate it with my diagnosis. It is usually said in a tone of pity with accompanying wide-eyed sympathy. People are nice, and I’m grateful for that, but I’m still an adult who craves a more complex response than wide-eyed pity. For I was diagnosed with stage 3 pancreatic cancer at the ripe old age of 28, placing me firmly in the Adolescent and Young Adult (AYA) category of cancer sufferers.

To qualify for this coterie, you must be between the ages of 15 and 35, and you must, of course, have cancer. We don’t let cancer muggles sit at the table with us, just like we don’t let grey-haired sufferers of the malady have a piece of the pie either. It is our way of establishing exclusivity in a club that no one would ever voluntarily join. Previous cancer sufferers are welcome too, seeing as they can contribute to the woes of emotional turmoil that come with a cancer diagnosis in your youth, but that is it. Ok, perhaps those bereaved due to an AYA person dying of cancer can also come along. Perhaps they can invite their parents too. And their dog, who probably misses them dearly. But that’s it – period.

How it works if your age is borderline, or if you cross the bracket during your treatment, I’m not entirely sure. Let’s say that I was 37 years old – would I be turned away from the focus groups? Would my submissions to the AYA magazines be printed off by the editor, only to be scrunched up and thrown into the bin? I’d hope not. Lucky for me, I qualify, being the ripe age of 30 now, and I have a few years left before I must consider my maturity into the next category of cancer sufferers, whatever that is.

I’ve been navigating the world of being ‘young’ with cancer for over a year now. Things have turned out relatively well for me. The first seven months of chemotherapy showed positive results, shrinking my tumour by about a third. Despite this, I was told that the progress was unlikely to be enough for my tumour to be removed in surgery. Due to my age and health, the oncology team still passed my case over to the specialist surgeons for review, in hope that something could be done, even if a full removal was not possible.

The universe had other plans. I woke up following my surgery to the news that my tumour had remarkably been fully removed, but that they had to also take out the entirety of my pancreas. If that wasn’t enough to process, a few other things were removed too – over half of my large intestine, gallbladder, spleen, bile duct, some of my stomach and, for good measure, some of my liver. Two major arteries were also reconstructed, a sentence which still doesn’t mean a lot to me; it conjures up images of a surgeon laden in green overalls but with a yellow hard hat on and a hammer in hand, which emphasises how immature my understanding of surgical procedures is. I wish to keep it that way.

The recovery was harrowing. I wondered if I’d ever feel normal again, especially now that I am insulin dependent (AKA Diabetic). Nearly a year on from the operation, I do feel much better than I thought I would, but everything is very different. My life is punctuated by random abdominal pain and when I walk, I feel tension in the area around the scar, which intricately snakes across my abdomen. It feels strained. Most of the time I manage to forget about it, but it does bother me from time to time.

Sometimes, after meals, the skin around the scar bulges out, making my stomach look malformed. It can feel particularly uncomfortable when this happens, and it is the primary reason that I am slowly adjusting my diet, eating less of the foods which seem to make this happen. Of course, it is mainly carbohydrates, which is easily the best food group, but as I am diabetic, I already view them with suspicion, so it is probably for the best. Carbohydrates are, after all, trying to kill me. As the body breaks them down, they cause the blood sugar levels to increase. When I eat them in the evening, I find my diabetic alarm going off more frequently on my phone throughout the night. It is a sharp alarm noise and it is awful to wake up to. I’m essentially flipping the Pavlovian method on its head and treating myself to not eat carbohydrates in the evening by being woken up by a piercing alarm sound all night. It is slowly working, but carbohydrates are a hard habit to kick. Don’t even get me started on not eating chocolate in the evening.

One advantage of the scar is that getting it out has become my new party trick. It used to be my ability to put the entirety of my fist into my mouth, but I’ve retired that move. I was once at a party where someone did a backflip in front of a room of onlookers, who all burst out into cheers and applause as his feet landed safely back on the ground. “That’s a real party trick,” I thought to myself. I like to think that these days I’d give backflip guy a run for his money. A scar as big as mine is adaptable – one day I was hit by a double decker bus, the next I was attacked by a shark. The scar is all the proof I need. It probably wouldn’t erupt a room into jeers, though. It is more in the ‘interesting’ category as opposed to ‘enthralling’. Doing a backflip is interesting and enthralling… It really is the ultimate move. I don’t attend parties anymore, so I guess it doesn’t matter.

Of the things I’ve learnt from going through a cancer diagnosis, the most prominent lesson has been that people change in life. I found myself having to mould aspects of my personality into a different shape to better accommodate the challenges that I was now faced with. The treatment is gruelling; I constantly surprised myself with how much I could withstand. Chemotherapy, surgery, the feeling that death was always just a few steps behind me. I found a way through it all, but the journey wasn’t smooth. Support from friends and family is essential, but even that wasn’t always enough.

It is difficult to unload your true fears and compulsions onto people so close to you. They are going through it too. In some ways, it is harder for them, as they have no control over the situation. Sometimes, they are pedestrians, standing idle on the side line whilst you face obstacle after obstacle – the pain, fear and devastation which you become accustomed to, but that they never quite understand the extent of. The unknown can be more dangerous to the individual as it presents an inexhaustible amount of horror; friends and family can be locked in limbo, whilst you travel the length of your mental capacity, in search of something to keep you going, no matter how bad things get.

This is why the AYA community serves as such an important tool for people like me. Something that you are commonly told when you are young with cancer is that it “should not be happening to you.” Why wouldn’t it be happening to me? Why not now? Sometimes we draw the short straw, and there is no reason as to why. When I was first diagnosed, I wondered what I did to deserve this. Those thoughts do little to comfort you, and when you must deal with the reality of having cancer every minute of every day, you don’t benefit from having a victim complex about the situation. Stuff happens in life and sometimes, that stuff happens to suck for you in particular. It isn’t easy to keep that level of clarity all of the time, but it is a helpful tool to lean on when going through a hard time, whether that is physically, mentally, or both.

Conversely, there are still people that meet the news with a strange callousness that I don’t understand. The people who hear that you have cancer, and respond by saying “you’re young and healthy, you’ll be fine.” I’m just glad that these people don’t tend to be oncologists, because I think the death rate among AYA cancer sufferers would be far higher if the consensus was that anyone young is invincible and, thus, will be fine. One of the first things I read after being diagnosed with my cancer was that people who are diagnosed with it seldom live to the 5 year mark from diagnosis. No one can prepare themselves for something like that, and to fall back on the notion that age guarantees survival would be careless. Optimism is a powerful tool, but naivety can be destructive. Sometimes, facing up to the reality of the fight at hand helps an individual to push their limit further.

AYA charities provide a space where young people with cancer can speak and relate to each other. In my experience of joining support groups of all ages, where many attendees were over 60, I left feeling more isolated. It reinforced a feeling that what was happening to me was unjust. AYA reminds you that you are rather unremarkable and that there are others experiencing very similar feelings to you. It makes a huge difference.

Further to this, many cancer charities are set up to support a traditional person with cancer, but not anyone else. I commonly find opening hours of charities to be Monday – Friday, 09:00 – 17:00. Although I understand why this is, it isn’t helpful having a workshop or support group in the middle of the day. I’m not retired, and I can’t afford to be signed off work forever. The AYA charities are better equipped for this, and I have attended many evening sessions with them, where I am not so constrained, and having to beg for time off in the middle of the day to attend an event.

Despite all of this benefit to young cancer sufferers, AYA charities go relatively unnoticed. Because of this, I wanted to write a piece on how much I appreciate their existence, and how they have helped me through some tough situations. In the UK, I have attended a few Shine events, and am looking to join their summer meet up in London now I am living back here, and in the US, I have had multiple pieces printed in Elephant & Tea’s magazines, as well as joining some very interesting events which they run; some of the stories I have read in their magazines have really resonated with me, and I find myself going back to read them frequently.

So, although you may not be an AYA cancer sufferer, I’m sure you have experienced the negative effects that cancer can have on an individual, whether they fall within the AYA category or not, and on the people around them too. In future, if you are looking to raise money for a charity, consider seeking out one of these smaller AYA charities and doing it for them. I know that they’ll really appreciate it, and you’ll be contributing to a service which makes a huge difference to people like me.

Surgery and Yellow Mayonnaise

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Taken 04.06.22 at a Music Festival

It has been a few days since the meeting with the surgeon. The response has been a bit varied among my family and friends. Surgery certainly makes everything more real. Knowing it is a major operation which carries so many risks brings an entirely different element of worry to the situation, I get that. If the situation with the tumour was more positive and the surgeon was more confident he could do a full removal, the decision to push on with surgery would bring a further level of comfort that it is the best decision. Seeing as this is not the case and that the tumour seems to be surrounding the artery still, it brings much more anxiety for all involved. For me, I will not be conscious for any of the surgery, or even most of the intensive aftercare. It is everyone else who will have to painstakingly sit for hours, waiting for the news of how the surgery has gone, what they managed to do, and if there were any ‘complications’. By the time I’ve found out these details, it’ll likely be days after the operation. I’ll be off in dreamland, so deep under the influence of drugs that I’ll probably be exploring Narnia from my vantage point, riding on a dragon’s back (I’ve never had a dream like this so I’m not sure why I would start now, but it’s nice to dream about the potential of your dreams).

There have been a lot more tears since Tuesday. Perhaps it is a combination of learning what my staging is and having it clearly communicated that a full removal is unlikely. It could still happen if the scan failed to be accurate in its portrayal of the tumour, but he seemed to doubt it would be so wrong. I did do another CT scan at the hospital, so I’m waiting for the surgeon to call me with the results of that. Perhaps he will be more confident of what will be done in surgery once he has reviewed it, assuming the scan is better quality than the last one and offers more insight. Nano-knife is the most likely outcome. A full removal is not out of the question eventually, I believe, but the surgeon didn’t seem willing to discuss such a scenario. I didn’t try, to be fair. He had an air of confidence about him which was tantalising. Every sentence was carefully thought out, every word scrutinised in his head before it left his mouth. These situations are tense; you could tell that he was experienced in dealing with them.

I’m unsure whether he will do some form of partial Whipple no matter what he decides is possible with the tumour. I need to ask him when he calls me about the scan results, but it’s one of those things that I’m unsure whether getting an answer is better for me. It seems easier to just wake up after surgery and face the music then. The outcomes sound so varied depending on what they see during the operation that I doubt I’d get a straight answer anyway. At least I trust this guy to tell me that the answer isn’t easy and I’d believe him if he said as such. The fact that there is a cyst on the other side of the pancreas to the tumour indicates that the surgeon will have to do more than just deal with the tumour. We did ask him if he would be removing the cyst despite what happened with the tumour, and he said that he would. It was funny – his reaction was almost like this was a total afterthought – an irrelevancy in the face of the cancer. “Oh yeah, there is a cyst there too, isn’t there? Yeah, we’ll get that out,” he casually said when the question was put to him by Anna. Surgeons are so casual. They must realise that their job terrifies the other 99.9% of people on planet earth. I’m sure that there’s a smugness that comes with that territory. I’d certainly be smug about it if I were one. He didn’t seem particularly smug at all. After arranging the CT scan on the phone with the radiology department, he said that he needs to get a nurse to put the cannula in. “I can do surgery on you but I can’t cannulate you,” he chuckled – I suspected this was that smugness coming in to play.

One of the things I have changed about my behaviour recently is my diet. Since learning a little about the immune system and how it is constantly fighting ‘bad’ cells being created in your body, I have been much more taken into the idea that your immune system plays a vital role in how your body battles cancer. Before, I thought whether you developed cancer or not was more a thing of luck, with a heavy dose of genetic makeup. The book I am reading seems to suggest that this is not the case. He references a study about fostered children. The study was conducted in New Zealand as apparently they have detailed records about births and biological parents. In the study, they measured the cancer rate among a group of people who were fostered from a young age. If the formation of cancer was more down to genetics, the numbers in people who suffered from cancer would be similar between the focus group and their biological parents, irrespective of whether they were raised by foster parents or not. If the formation of cancer was more down to behavioural patterns rather than genetics (e.g. diet, exercise habits etc), then there would be less significance between children and their biological parents, and more significance in the trends between the foster parents and the children they adopted. The study showed the latter, indicating that the formation of cancer was effected more by behaviour than genetics.

Now, I’m not suggesting this single study proves the point entirely, and more importantly, I have not looked into this study myself and do not plan to. It is enough to convince me that behaviour must be more important than I perhaps anticipated. As a result, I’m trying to avoid processed food as much as possible, based on some scrutiny of these types of foods. Turning over a food packet to look at the ingredients and seeing different types of sulphites listed is a little concerning to me, even with my limited knowledge of sulphites (and believe me, my knowledge is limited). A quick Google tells you that they are only dangerous for a small number of people who have problems with asthma. Does this mean that it is only an immediate risk to these people, though? I can’t imagine digesting a lot of additional sulphites is good for you, never mind the fact that they are added to foods to preserve them. Anything that makes it harder for the world to digest the food (i.e. through the process of bacteria breaking it down), sure means that it is harder for your body to break it down. The more unnatural the ingredient is that you are adding to preserve the food, the more dangerous it would be for your body, I would assume. It makes logical sense to me. The world isn’t always logical, though, so maybe I’m barking up the wrong tree here.

Yesterday morning, I decided to Google ‘should you avoid food preserved with sulfites’ to test my theory. I had seen ‘Sulphite Dioxide’ on the back of the packet for some dried apricots and it got me interested. Notice that I did not add ‘if I have cancer’ onto the end of the question; I’m not even getting into that with Google. Searching for anything specific to cancer with Google can lead you to all sorts of dark corners of the internet. It seems to be the most prolific hearsay topic on the planet.

The first article I clicked on was one titled 5 Food Additives You Should Avoid. According to this list, and after doing more reading around, it seems that sulphite dioxide has a low toxicity for humans in most cases, so is generally regarded as safe. As I stated previously, though, I’m sure it isn’t completely inconsequential eating it in a lot of your food, but anyway. The thing in the article which got my attention more was food additive number 1 in the list – Sodium nitrates. Want to know why? Because it states that they increase your risk of pancreatic or colorectal cancers. If there is one way to grab my attention, it is by throwing around the name of my beloved cancer. Pancreatic. Dancreatic. Dan’s Dancreas. Dan’s Dancreactic Dancer. Anyway…

Apparently, sodium nitrates are mainly added to meat to stop it from discolouring. That should make them extremely low risk for me, an individual who does not and has not eaten meat since 2016. Perhaps this is another cruel irony of the world, like when a non-smoker gets lung cancer. During the digestion process, toxic chemicals are released due to the sodium nitrates being broken down by stomach acid. It is them which pose a threat to humans according to the limited research I did on the web. Rather than always researching other people’s research, I thought I’d conduct my own. I headed down to the kitchen, opened the fridge and found a packet of bacon. It had come from Waitrose, one of the more expensive supermarkets here in the UK. I turned the packet over and read the ingredients. Just like that, I completed my study. Sodium Nitrate. Confirmed – it is indeed added to meat. Study complete. Science is so easy. You probably thought I was somehow going to confirm that the breaking down of sodium nitrates in the stomach releases deadly toxins didn’t you? I’m not that good – go speak to a real life scientist if you want real research.

It just feels like a minefield trying to investigate diet further. Information seems so inconsistent and you wonder how things get approved for use if they truly are so bad for you. What is true, apparently, is that cancer rates in the west are much higher than in the east, and it would make sense to me that the key difference between us is diet. We have been eating highly processed foods for longer in the West, with the quick growth of fast food since chains like McDonald’s grew in popularity. Now processed food is everywhere and considered very normal. We look at things like butter as being intrinsically bad, despite us being able to comprehend how butter is made. Look at the back of a margarine tub and try to figure out what on earth the ingredients are in it – half of them sound like they belong on the back of a toothpaste packet or something. Do we really feel better eating that just because it is lower in calories? Fats are very useful to us humans, we seem to forget that fact. My body struggles to process them now and I have to take supplements constantly to ensure they are being absorbed by my body. What I’m trying to say is that you should revel in the fact that your body can absorb fats naturally (if it can) and utilise it by eating full fat butter, damn it! I do it now more than ever and it is a beautiful luxury.

Sometimes I find myself pondering whether knowledge is power or not. Do I find myself feeling empowered by it or intimidated by it? The question never feels more applicable than when trying to research diet and cancer. My new thing is to mercilessly avoid food with preservatives in it, where possible. All of a sudden, I am not eating any crisps, baked goods from the shop or heavily processed chocolate bars; those of you who know me personally will understand what a huge deal that is for me. If I want something sweet, I try and bake something quickly. For example, I’ll bake apricot and walnut bars to have at breakfast, alongside fruit. I’ve started making my own mayonnaise instead of having it out of a bottle; the home-made stuff is much more yellow than white – it’s strange when you have only just started making it yourself. It really does taste lovely when fresh and you can mix up how much mustard you put in it, which is nice. The next step is to learn to make loafs of wholemeal bread but I’m building myself up to that. It’ll probably take me a morning to get into it as dough is not something I have worked with so far. Rivetting stuff, dear reader, I know. This blog is probably your guilty pleasure these days with such innane ramblings about diet and food, if you even try to have any pleasure from it. At least it isn’t all cancer cancer cancer; it also makes you feel guilty about enjoying the foods you’d normally mindlessly eat.

Yet, this obsession with avoiding preservates is probably just a new scheme to feel in control of the diagnosis. I’m not suggesting that it doesn’t assist in the fight against cancer too, but plenty of people have spent their entire life eating terribly, not having a care in the world about how many preservatives are in their bacon sandwich, yet don’t develop cancer. It is difficult to reconcile that, as I believe I’ve lived a fairly healthy life so far and still managed to get cancer. The fact that I likely ran 100km with the beginnings of cancer brewing in my pancreas is almost comical to me at this point. It was after I had originally got to the doctor’s complaining of stomach issues. The result of that was multiple scans at the hospital, but with no meaningful results. Their conclusion was that I had a strange form of constipation; it never convinced me. I guess when your tumour is 3.2cm at its largest, it is difficult to see with conventional scans. You have to step up to the expensive PET scan which they weren’t willing to do at the time. They don’t tend to assume that an otherwise healthy adult in their late 20’s would have pancreatic cancer; I know that from the first few weeks when trying to be diagnosed – “It’s probably pancreatitis but we can’t rule out cancer, although it’s very unlikely to be that.” I can’t remember how many times I heard words to that effect, but it was a lot.

So, here I am. Dan with the Dancreatic Dancer trying to research diet in an attempt to stop the Dancer getting the better of the Dan. Maybe the fight against preservatives will provide a useful distraction over the next few weeks, until the surgery day comes. Making everything from scratch is certainly time consuming. I’m getting used to the yellow coloured mayonnaise now, anyway.

A Shift in Time

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Time has been on my mind these past few days. Because this chemotherapy cycle started on Monday instead of Saturday, my perception of it is all over the place. I keep having to think in terms of where I would be up to in my normal timeframe… “Ok, so today is my Tuesday. I don’t usually run until at least Wednesday and regularly struggle to get out of bed until that same day, so I need to try and relax today.” This is the sort of logic I am knocking around in my mind. It is throwing my week off considerably, as I keep thinking it is the wrong day and finding myself confused at feeling a certain way still. For example, today was my first injection day, but this usually falls on a Tuesday. It may sound minor if you haven’t been on chemotherapy before, but you establish certain routine behaviours and expectations. I usually expect to start picking up by the following Saturday, for example, but in this cycle that will be the following Monday instead.

I was sent the medical report from my oncology team to submit to work yesterday, on Wednesday. This report is to help support a case that I can return to work on a reduced number of hours. On Monday, whilst at chemotherapy, I received a call from my specialist to discuss it. He wanted to ensure that he was not only supporting me in what I wanted but also confirming that he agreed with the things being stipulated regarding the return to work. He did not want to support a position he viewed as untenable or unsuitable. “Are you absolutely sure you want to return to work?” he asked at one point. It is an interesting question. I’ve thought about it a lot since he asked it so straightforwardly. Especially so given everything else he spoke to me about – the continuing treatment, the changing of circumstances depending on how well received the treatment is, and the seriousness of the type of cancer I’m dealing with. He did also state that keeping my brain engaged is important, though, and that having more financial stability is also important if it is worrying me. It certainly has been. I do feel ready to try and return to work, I think. The only way to find out is to do it, anyway.

Excitedly, I opened the report as soon as I saw the email. I’ve been chasing it for a few weeks, so it genuinely was exciting to receive it. Not one to take my own advice regarding not Googling things, I saw the phrase ‘locally advanced adenocarcinoma of the pancreas (pancreatic cancer)’ and immediately headed over to Google. Every time I see ‘locally advanced’ written, I already feel a jolt of uncomfortable reality strike me in my stomach. For some reason, I get into a routine with the chemotherapy, where I manage to get back to running a few times a week, and feeling more ‘normal’ the further away from treatment day I am, and I stroll into a mental complacency. Everything will be alright; how could I feel this normal if it wasn’t going to be? The phrase ‘locally advanced’ bites back against that confidence – maybe I’m not so safe after all, I start to think. I don’t know why as I’ve known my cancer is locally advanced since being diagnosed, but you always want your cancer to be staged in the best possible way for your survival; mine isn’t.

The part that I googled was ‘adenocarcinoma’. I’d heard this word said a few times in the hospital, and have seen it written a few times too, but I had no concept of what it was, really. From my brief Googling, I believe it is where the cancer begins in the mucus duct, and it seems fairly common in pancreatic cancer with one website saying 85% of cases are due to it. I was quickly put off divulging too deeply into the topic, however, by the list of phases accompanying it – all very common when Googling Pancreatic Cancer, unfortunately. ‘Deadliest cancers’, ‘10% of pancreatic cancer survivors alive 5 years after diagnosis’ etc etc. You’d think I’d have a thick shell to it all by now, but it got to me. I started to cry for the first time in a while. Sometimes it’s good to experience these emotions, I guess, but it’s also nice to know that this was the first time I’ve experienced them in a while.

I delved straight into my sad music catalogue as a form of catharsis. Julien Baker has plenty of songs that meet the profile nicely. ‘Something’ seems to be the song that has stuck as I’ve been frequently listening to it over the last 2 days. Despite clearly being about a relationship breaking down, it has a few lines that stick out in my mind. I wanted to draw on them and discuss them in context of my situation.

Julien Baker – Something

“The walls of my skull bend backwards
And in like a labyrinth”

As I sat reading about adenocarcinoma, I felt a sensation in my head that I feel Julien demonstrates here really nicely. A pressure builds up in my head that becomes unbearable when I try and contemplate too much of what is going on at the same time. It’s Ok when I manage to compartmentalize it, but when too much information hits my mental at once, it all becomes overwhelming. My mum happened to walk into the room as I sat with the pages open on my laptop. She asked me if I was Ok and that is when I started to cry. There was a lot of information going through my head. Everything felt hopeless all of a sudden, and I couldn’t find a way to decrease the tension building in my head.

The idea of it being a labyrinth, not allowing any escape for those negative thoughts, getting lost within the walls and not allowing them to be processed, sits so nicely with how I was feeling. It has happened to me a lot of times during this life-changing experience. I remember a similar sensation happening as the doctor delivered the final diagnosis, whilst I sat on the hospital bed trying to contemplate the words. Hearing my mum and Anna break down into tears around me, whilst trying to focus on what he was saying to me. Trying to determine how serious the diagnosis was, trying to hold myself together whilst feeling the people around me suffer. It was hard.

“I knew I was wasting my time
Keep myself awake at night
Whenever I close my eyes
I’m chasing your tail lights“

These lyrics really speak to the hopelessness I briefly mentioned earlier. For some reason, I started getting a feeling on Monday evening that my treatment was hopeless, and that I was engaged in a losing battle. I’m not sure why as these lines of thought seldom come to me – I really do manage to stay positive most of the time.

The lines ‘Whenever I close my eyes, I’m chasing your tail lights’ really nicely illustrate the feelings I had towards the cancer at that moment, as I sat speaking to Anna on Facetime. It felt like I was 2 steps behind it, only identifying it from behind and never getting in front of it. That is the problem with being a patient, surrounded by specialists in a field that you have very little understanding of. You sometimes wonder if you have really understood the diagnosis, and worry that the medical team are either shielding information from you or haven’t managed to communicate it in a way that would allow you to understand. This has been much less of a problem since being at The Christie as I feel a huge amount of trust in my team there, but it doesn’t stop me from misunderstanding things that are said to me.

Sometimes I feel confident that I understand my diagnosis, but it only takes a word such as ‘adenocarcinoma’ and you’re back to feeling vulnerable. In reality, I probably walk a line between reality and delusion – reality kicks harder when the more difficult aspects of the treatment are prominent, and delusion sets in during the better periods. In a good cycle, I can run 27 miles in a week, go out for dinner a few nights and feel relatively normal (other than the catalogue of drugs I have to take to reach that normality). On a bad cycle, though, it is quite the opposite; getting out of bed can be difficult, and I spend much of my time fighting the sickness and trying to sleep off nausea. These are the more palatable side effects and those who have read through my Chemotherapy Diaries series will likely understand more about the unpalatable ones.

“I just let the silence swallow me up
The ring in my ears tastes like blood“

Again, these lyrics likely mean something else to the artist but very specifically appeal to the effects of the chemotherapy to me. A metallic taste in the mouth, similar to the taste of blood, lingers badly for a few days during and after my treatment. This concept of a blood taste in the mouth, coupled with the idea of silence swallowing me up, ring so true to my experience of the first few days after treatment. A friend of mine who survived cancer used the term ‘Chemotherapy Fog’ earlier. It’s a nice way of describing it. I usually spend a lot of my time in bed for the first few days after treatment, in and out of sleep and struggling to draw a line between consciousness and reality. I have to eat strong mints constantly to get rid of the metallic taste in my mouth as it makes me feel extremely sick. The time spent alone in bed, shifting in and out of consciousness, can put me in a very strange headspace. Sometimes it really does feel like the silence is swallowing you up, and you experience some of the lowest moments when you’re alone with your thoughts and in this vulnerable period. I’ve also experienced some of the most positive breakthroughs in these moments alone, though. I find myself needing space to process information and get my head in the necessary places to keep fighting through the harder times. You’re constantly left to the whims of your vulnerability, and it can take you either way.

If you enjoy the song above, I really recommend checking out the whole of the below Tiny Desk Concert by the artist. She has an incredible way of layering the guitar and creating the most impressive soundscapes, whilst delivering an overwhelming amount of emotion in her performance. I remember the first time I watched it and the whole video had me totally immersed from start to finish. The second song, Funeral Pyre (or ‘sad song number 12’ as she refers to it during the video) is particularly haunting.

I Guess We’re Mortal After All

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I’m feeling emotionally volatile this week. It is probably a combination of a few things, but I’ve been trying to come up with candidates in my mind. My third cycle of chemotherapy has been feeling harder than the others mentally. There is always a lull period after a positive build up to Christmas, where the excitement dips again as another year draws to a close. I also wonder if I am experiencing a down period after finally releasing the blog, after thinking about the concept over a matter of weeks and feeling so excited by it; it doesn’t diminish my sense of accomplishment and satisfaction with the blog, but I think it is worth mentioning as a potential factor.

I’m finding myself gravitating to a metal band called Architects’ 2018 album titled ‘Holy Hell’ at the minute. It was their first album release after their guitarist and one of their founding members, Tom Searle, died of cancer in 2016 after a 3-year battle with cancer. Tom Searle’s twin brother Dan Searle is also a founding member of the band playing drums. He was aged 28 when he died, the same age I am now and the age I was diagnosed with pancreatic cancer. Together, they were the sole founders of the original band.

The band are undeniably “heavy” and will not be to everyone’s taste, but the album is littered with poignant and heart-wrenching lyrics of loss and grief. In a different sort of post, I am going to pull out some of the lyrics which speak to me in my current headspace and talk about them.

Dan Searle is credited for these lyrics as far as I can see, so you know that they are coming from a place of real pain and loss. Despite being very close with my entire family, I cannot imagine what Dan Searle went through writing these lyrics and processing the situation. These twins were founding members in their band who went on to become one of the most successful in the genre, in the UK and beyond. They achieved so much together, yet Tom’s life was drawn to a tragic, premature close. Unfortunately, that is the reality of cancer sometimes.

Mortal After All

Have you forgotten the deal we made?
I've seen the end and the pain we trade
All these walls will fall
I guess we're mortal after all

I can only speak to my experience here but accepting my own mortality has never been easy for me. The cancer diagnosis certainly forced me to address this somewhat dark reality: that life is fragile, age is not a guarantee of health and that one day, we all must address the fact that we are mortal after all. The thing I have always wrestled with more is the mortality of the ones around me that I love. When I was young, I would spend a lot of time worrying about my parents and how they may die. Would they suffer? Are they scared of death? I’d torture myself over those questions more than I would ever torture myself over the question of whether I fear death or if I would suffer at its hands. It didn’t seem relevant to me yet; I was too young to think about it. Something I have learnt about myself in this process is that I genuinely don’t think I fear death or suffering. For the first 2 weeks after my diagnosis, I did not get any reassurance from any medical professionals that I had a good chance of survival. It felt like it was time for me to accept that this will likely kill me, something which I thought would be daunting. In reality, I could only think of all the incredible people I know in my life, the friends I’ve met, the things I’ve done and the times I’ve shared. I felt no fear of death, only appreciation of what I had in my life. To be able to die feeling that way felt like an honour, and I was proud of it. The ultra-marathons I revelled in entering took a lot of suffering, both to train for and to complete. My suffering at the hands of the cancer isn’t so different, and I’m sure if I manage to beat it, the end will feel comparable to other fitness events I have completed, but with a much higher degree of emotional intensity and reward. It is a reminder that we are all mortal though, a fact which isn’t worth dwelling over constantly, but worth remembering.

Doomsday

They say "the good die young"
No use in saying "what is done is done" 'cause it's not enough
And when the night gives way
It's like a brand new doomsday
What will be will be
Every river flows into the sea, but it's never enough
And when the night gives way
It's like a brand new doomsday

I remember first hearing this song and finding the lyrics in the chorus utterly devastating. The injustice and pain of the situation cut through the song, with the added depth of the shouted vocals and driving guitar riffs. You can feel the anguish just reading the words. In my current situation, I really relate to the concept of a brand-new doomsday being felt over and over again. Some mornings I wake up and cannot control my negativity over the situation. The morning brings a new doomsday which I must work through. It is not the same doomsday as Dan is likely writing about, as his is one of grieving, but I like to think they are coming from a similar place. The imagery of the line ‘Every river flows into the sea, but it’s never enough’ always strikes me. Us humans are quite self-centred generally, and we get very caught up in our own reality. But the fact is that the world continues whether we live or not, and we are the only ones really trying to seek meaning in any of the things taking place. Everything else just is. It may feel like it isn’t enough for us because we attach so much emotion and meaning to things that occur in the world, but in the grand scheme of things, everything that happens just happens. Although it sounds nihilistic in a way, I take a lot of positivity from this fact. If my life is due to end at the hands of pancreatic cancer, then that is Ok. I am not naïve enough to think that I am making it out of life alive, I just hoped I would not be dealing with this situation at such an early age. But there are plenty of people who have died younger than me, who have suffered more than me, and who are battling far more difficult situations with less support than me. I was born into a love-rich family, in a wealthy country and with a stable life around me. The world will carry on whether I live or die, and I like to think I will have left an impression on the ones I love that will keep my memory alive longer than my body was ever capable of.

A Wasted Hymn

Is this penance for my sins?
I gave everything for this phantom limb
Holy Ghost, nothing lasts forever
Now it's time to sink or swim
I've got nothing except this wasted hymn
Holy Ghost, nothing lasts forever

I got into A Wasted Hymn a few years after the album came out, only a few months before being diagnosed. It came on random on my Spotify I think, and the chorus spoke to me more than it had any other time that I had listened to it. The feeling of hopelessness is so well portrayed in the chorus, with the attempt to excuse it in the words ‘Holy Ghost, nothing lasts forever’. The fact that the hymn is described as wasted emphasises that the feeling is that the subject, Dan, feels as though the words mean nothing if they cannot change the reality of the situation. Or that is how I read it anyway. For me, the song strikes a lot of emotion in me as it makes me think about my loved ones trying to process what is happening and may happen to me. Will the same feeling of hopelessness and nihilism be prominent in their thoughts? Will they try to blame themselves in some way (‘Is this penance for my sins?’)?

All these lyrics are a grave reminder that your death doesn’t end all the pain for everyone else, it is the beginning of a new pain for the people who love you. All I can say to reassure them from my perspective is that I truly believe that death is the end of the pain for the person dying, and that you must hold onto that fact. Sometimes, it is the only positive that can be drawn from a person’s death. The world existed for an inconceivable time before we were born, and it will continue to do so after we die. Although our lives are full of meaning and beauty, we are all bound to fade back into nothingness eventually, and that is what makes life so special, as well as painful… nothing lasts forever.