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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.

Diabetes for Dummies

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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.

My 90 Day Averages

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’.

Father’s Day

godley93, , , , , , , , , , , , 5 Comments
Me, Mum, Dad at My Sister Josie’s Wedding, 2017

Last night I had a weird dream where I had hurt my knee. I was really worried about it as I sat in some kind of waiting room. I’m not sure if I knew how I’d hurt it in the dream, but I don’t remember that part if so. There are many blurry patches where I’ve forgotten what happened exactly, but I remembered the gist of it. The next thing that I remember is being in a doctor’s office and him feeling around my knee and asking if it hurts. All of a sudden he poked a spot which did hurt and I gasped in pain. It woke me up almost straight away. I was confused at first. I felt certain that it had really happened for a couple of seconds. Looking around me in the bedroom, I realised it was a dream. I suspiciously looked at my knee and felt a little uncertain about it. Was my dream predicting another problem with my knee? Or was my mind playing cruel tricks on me, reminding me what problems I used to consider life-altering in the past and laughing at the situation I find myself in now? If my mind is doing this, that means there is some part of my brain that is capable of doing such a thing. That would make me a bad person, wouldn’t it? It would certainly mean that part of my brain was plotting against me… although it probably was just a random memory dream.

This situation has happened to me before. I had an injury from overtraining in 2020. It happened a few months after lockdown started; I’m assuming because of the working from home and not moving around enough in the day, then running a lot in the evening. When I went to the physio at the hospital, I expected her to say that it was a knee injury – my knee hurt whenever I ran, so why would I expect anything else? As she made me do a series of exercises and activities, she smiled to herself. “I think I’ve figured it out,” she said, “it’s your hip.” Turns out that my left hip was very out of balance with my right one, meaning that my right one was much stronger than my left. It meant that my left hip was recovering slower from the runs, resulting in small changes in the way that I was stepping with my left leg whilst running. Those small changes were enough to start damaging my knee. Whilst investigating this issue, I had my first ever MRI scan. It felt a little intimidating at the time, but nothing came of it really. I just had to do strengthening exercises and have a break from running.

That winter I cycled a lot in place of running. It was during the first Covid lockdown and there wasn’t a lot of traffic around London. It was actually a lovely time to be cycling around the capital. I discovered all of the hills in the north of the city: Muswell Hill, Ally Pally and many around Hampstead. It was really fun. Then I started joining my cousin and a couple of his friends for ‘Tuesday Hills’ when the weather started to get warmer. Throughout summer, he and his friends would meet on Tuesdays to do 20 miles of tough hills around the Southeast of London, then go back to one of their houses for a BBQ and a few beers. That introduced me to the hills around Crystal Palace, Dulwich and Forest Hill, where Anna and I decided to purchase our flat in 2021. That summer had a large influence on me. I saw a lot of London that I hadn’t been to before. It influenced where Anna and I would buy our first flat ever flat, that I find myself writing this from and that we love so much.

For the first 6 months of living in the flat, I would regularly get out and train on those same hills. Despite it being the end of lockdown and the roads being busier again, it felt too convenient to not still get out on the hills around the flat. I haven’t been out since being diagnosed – I was thrown straight into treatment, and that’s been my life since really. I’m also worried about my hands as the neuropathy isn’t going from the chemotherapy. I don’t want to mess up using my breaks on the hills around London when there are cars everywhere, and there are always cars everywhere now. I’m not sure if it’s a mental block or a legitimate excuse, but I’m not ready to find out just yet.

My love of exercise comes from my dad. He’s always been obsessed with exercise and it defines a large part of his life, but not all of it. I’m going to list his passions below and then speak about them one at a time to provide some context to the best things about him on Father’s Day, here in the UK.

  1. Sweet Things
  2. Work
  3. Maintaining Bikes
  4. Exercising

1. Sweet Things

My dad has been a huge influence on me with his love of sweet things. He is the first person I witnessed putting chocolate in the freezer to stop it from melting when he eats it with his hands. I then witnessed him putting chocolate-covered digestive biscuits in the freezer, and now do that religiously too. To be honest, any snack with chocolate in/on/around goes straight into the freezer now, both in my house and in my parent’s house. It is a far superior way of eating chocolate. One area of sweet treats where my taste deviates from my dads is fruit cake. I cannot stand fruit cake. I’m not sure why, but it brings back memories of me being a kid and wanting something to eat, so eating some fruit cake from the kitchen side and feeling bitterly disappointed that it wasn’t chocolate cake. That disappointment sits on my shoulder and has never left; I now have a permanent grudge against fruit cake for not even attempting to be chocolate cake. It doesn’t even have chocolate chips in it – why would anyone bother? Nowadays I’m not too obsessed with chocolate cake, but I’m still mad at fruit cake for daring to not be chocolate cake.

I’ve witnessed my dad eat half a victoria sponge cake in a single morning before 9am. I came downstairs feeling a little hazy from the chemotherapy a few months ago. My mum had baked a cake the evening before for dad’s birthday, but it had been baked too late for anyone to eat any of it that evening. I thought I’d have a laugh and see how much he had eaten that morning as I waited for the kettle to boil, allowing me to make my coffee. To my dismay, half the cake had gone. The only people in the house were me, Anna and my mum. My mum was still in bed and Anna had been with me the whole time. There was no doubt who had eaten all that cake. Dad the cake mad lad. He has an unparalleled stamina for eating sweet, sugary things; he will forever be remembered for it by everyone that knows him.

2. Work

Part of the reason that my dad has such a stamina for eating sweet things is that they are quick and easy to consume. Why is that valuable to my dad? Because he only ever has 3 minutes maximum to spare between meetings. The man boasts about how many hours he works as if it is a badge of honour. He once told me a story about how he had not used hardly any of his annual leave one year. HR sent him an email telling him he needs to take more leave, reminding him that it is necessary to get a break to stay mentally sane (not their exact words). Dad’s rebuke to this was to suggest that he gifts his annual leave to his PA at the time; HR (obviously) disagreed and said that it was not even possible to do such a thing.

What HR probably didn’t realise was that work does seem to keep my dad mentally sane. Everyone thinks their parents have the answers to everything, I know this to be true, but I do think my dad could give a good answer to anything. He has a very analytical mind and enjoys solving problems. It is the reason he agonises over the cryptic crosswords in every newspaper, every week. Sometimes he likes to humiliate me by asking me one of the questions; inevitably, I tell him I don’t know, and he tells me how ‘easy’ it is before explaining the most insane, inexplicable pathway to get to the answer. The experience always leaves me more confused as to why anyone would ever enjoy doing them, and probably leaves him feeling even smugger about how much he genuinely does.

There is another thing that his work demonstrates – his commitment. Not only through the amount of hours he puts in, but also the amount of time he has spent working on the railway. It is a true passion of his and he knows the workings of railways through and through. I know that people say it is a generational thing, with my generation’s parents spending much longer in a job than we tend to, but I really believe he would do it all the same if he could go back. He loves it. His colleagues love him, and last year he was given an award for championing women in the company. My dad simply likes people who care; you don’t need to meet any specification outside of that. If you care, are willing to learn and are enthusiastic about what you do, he will ensure that he makes time for you and will do everything in his power to champion your success.

3. Maintaining Bikes

Linked to my dad’s love of work is his love of bikes. He’s a civil engineer by trade but has mostly switched the practical application of the trade from maintaining railways to maintaining bikes. Typical of him, he cannot half-arse it as a mere ‘hobby’. It is a lifestyle. You will regularly find him on a Saturday morning sat at his laptop, watching detailed videos on how to replace x part on a bike. He will then discuss at length with you the problem he is trying to solve, how he managed to get a critical tool to help solve the issue, and how he got that tool off eBay for 50% of the price. I’m not sure why he enjoys saving money when it comes to bikes as it is not something he enjoys in every other area of his life. He pays around £160 a month for Sky subscriptions, yet only watches approximately 5 programmes, 3 of which are on the same channel, which is available on Freeview anyway. Sky must wonder when he is going to sober up and start demanding his money back, but there doesn’t seem to be a risk of that any time soon.

My dad spent a few months working on a bike belonging to a colleague of his. After hearing her talk about her bike being broken, he offered to take a look at it. It was his project for months. He was incredibly excited about it, spending lots of his own money ordering new and better parts for it, and at least quadrupling its total value. When he handed it back, he mentioned nothing about the money, time or effort that had gone into it. It is a perfect representation of many of the things that make my dad great – his want to help people, his ability to grasp a problem with both hands and tackle it with ingenuity, and a genuine disregard for money (I assume this is what it is, as he never spends his money on himself, yet finds ways to spend it on everyone else, even his colleagues).

There’s another reason that maintaining bikes is so important to him: he loves to ride them.

4. Exercising

My dad has always been incredibly into exercise; he’s also always been very good at it. When he was younger, he boasts that he used to run over 100 miles a week on average. You’d be hard-pressed to find anyone who thinks that is a good idea anymore, but at the time “you tried to run as much as you could, as hard as you could,” according to him (the exact wording may be incorrect but the general message is spot on).

He told me a story about how he was involved in a run on a 400m track once. The race distance was 100km, which is a ridiculous distance to be running around a track. There were various houses which backed onto it, and one gentleman was apparently outside gardening, watching them run. After a while, he got confused about why they were still running. “Why are you running around the track for hours,” he shouted to my dad as he ran last. My dad had to do a full lap before he could answer. “We’re running 100kms on it,” he replied as he ran past again. Dad proceeded to do another lap before being in earshot of the man again. “Are you fucking mental?” The man shouted back as my dad made his way past again; that was his response even after having 400m worth of time to contemplate his response. I don’t blame him – it is totally fucking mental to run that distance on a 400m track.

As he got into his 30s, the hundreds of miles he was running a month started catching up with him and he developed various injuries. Cycling took over from there. He’s been on various trips to Europe to tackle some of the most notorious climbs, once taking my brother Greg with him. I was meant to go too, but was starting a new job and told I needed to join that week to join a training course; I wish I’d put my foot down and refused now – memories could have been made that would be far more valuable than any job. That job did teach me a lot, though, so it had its own value. I met many friends for life there as well as growing a lot as a person. Without it, I can’t confidently say that I’d be responding to this diagnosis in the way I am.

I know that things are hard at the minute for both of my parents. It must be surreal to have raised a son, investing so much time, energy and love into something for so many years, to watch it potentially end in front of their eyes. Feeling the excitement of every achievement with them, watching them become a teenager, young adult, going to university, getting their first job; hurting with them when things don’t work out, celebrating with them when it does. In Lord of the Rings, there is a quote which goes something like ‘No parent should bury their child’. No parent should have to bury their child; it isn’t right. The world doesn’t work by the parameters of our perceived morality, though. People have to bury their children all the time, sometimes in horrendous circumstances. Here, in London, there are always stabbings in the news. Just a week ago in Forest Hill, a helicopter had to land in the park next to our flat to transport a boy to the hospital who had been stabbed in the neck. Luckily, he survived. He is 17 years old. His loved ones would have got a call to inform them at some point – where is the morality in that situation? There isn’t any.

In March 2021, Sarah Everard was lured into a car by a man, convinced to do so by the sight of his police badge. Unfortunately, that off-duty police officer had sinister intentions for Sarah, who only realised so too late to try and save herself. Her body was found days later in Kent. It turned out that the off-duty police officer was Wayne Couzens. He had told her that she was being arrested for breaching lockdown restrictions, showing just how evil this man was. He was preying on the fear of the day and how could Sarah say no to a police badge as a law-abiding citizen? It’s absolutely despicable.

The advantage of having cancer is that I get a period of time where I know that I possess something that may kill me, and so do my family. If we look past the awful parts of it, that’s actually an amazing opportunity to be afforded. Whilst I’m still healthy and able, I want to enjoy my time with my family and friends.

I’ve said before in the blog that I used to have a crippling fear of watching my parents suffer. It kept me up at night when I was about 10 and the fear gripped me. Now I have an opportunity to show them that you don’t need to suffer through these situations; you can face them with relentless strength. I still cry, I still get scared, I still feel angry sometimes. I just try to let none of it consume me for longer than it needs to. My life is amazing no matter when it comes to an end; I’m not going to waste a second more than I have to on being sad, angry or depressed because of a situation that was totally out of my control. My dad has been positive throughout this process – seeing every next step as progress and unrelenting in his determination that the only outcome is recovery. Upon hearing the news of the surgery, he seemed different; there wasn’t a voice of positivity, an uplifting perspective that this surgery was necessary and amazing, in its own way. It may not be exactly what we wanted to hear, that the tumour was likely to be fully removed, but it’s something. There’s still a chance that this happens anyway. no matter how small. Even if that chance is 0.000001%, it’s still more worthy of our time and effort to believe that this will happen over a more bleak alternative.

So, this is me throwing the positivity back at you, dad, and telling you that this surgery is amazing no matter what happens. Whether it gives me a year, ten years or cures me entirely, it is amazing. Even if the worst case happens and I die in the surgery itself, it was the best opportunity we had to fight. Besides, I don’t want to be buried when I die, I want to be cremated, so there will be no parents burying any of their children in this process. There’s always a loophole if you look hard enough.

Thank you for everything, dad. We fight on.

The Gift That Keeps on Giving

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Another chemotherapy treatment day rolled around yesterday. That meant another 6:45am alarm, 4.5 hours in the hospital on a Saturday and more baked goods for the nurses. Yesterday I made them chocolate chip banana bread. I’ll save that material for the next Chemotherapy Diaries post though, thank you; I’m collecting ammunition for it with every second that passes. But this isn’t a blog based on chemo complaints. This post has a more positive topic: thankfulness.

One of the significant side-effects of having cancer that is not listed on the NHS website is the incredible opportunity to see the best in human beings come out constantly and unrelentingly. I find myself humbled time and time again by the actions of others. This is another post, similar to my Friends & Family post, where my only goal is to highlight the amazing things people have done for me and give thanks. I’m only covering a select group of scenarios here, but I have plenty. I plan to slowly drop these things into other blog posts over time. “A steady flow of content, how irresistible,” I think to myself, stroking my black cat and cackling to the sky. I will name drop everyone one day, in one way or another.

The first thing I woke up to yesterday morning, doing my usual scan of Twitter and WordPress in bed, was this post from Dr. Eric Perry recommending my blog to his 33K+ followers. I was truly bowled over by the gesture. His blog is far more advanced than mine, both in form and purpose. His articles are written eloquently, always have a fantastic central theme, and contain well-researched information to support the points. It is an excellent self-help blog, and I am so honoured to have my blog featured within its work. To everyone who has joined Ebb and Flow from that recommendation, welcome, and I hope it lives up to the expectations set by Dr. Eric. I’ve already received touching comments from many of you, and it made my treatment day feel so special and joyous, 2 words I usually don’t associate with the chemotherapy ward.

The next person in the firing line is my cousin Anna. Unfortunately, she lives in Europe, so I seldom see her or her talented children. They play various instruments among the 3 of them. After a family wedding in Germany that I could not attend, my family returned home full of praise for her children’s instrumental skill after they performed there. Upon reading one of my Chemotherapy Diaries posts where I had complained about my hands cramping (as they are now) because of the drugs, she sent me a little gift. The below fingerless gloves arrived with a lovely note inside, telling me that they were to help alleviate the cramping when writing. I wear them often and they not only help the cramping by warming up my hands, but have a similar effect on my heart. What a beautiful gesture. Thank you so much, Anna.

A more general thank you next to an exceptional person in my life. Her name is Daniella, but everyone knows her as Dee. She insists that it is spelt ‘D’, but I cannot fathom something so ridiculous. D is a letter and something you try to avoid getting in an exam in school, not a name. In all seriousness, Dee has supported me so much throughout the 6 years I’ve known her, though more than ever since the hospital visits started. There are few people I find myself speaking so openly to. She is the first person I cried to when I was first diagnosed with a cancerous tumour. I had managed to keep it together with my fiance Anna, choosing a display of strength over vulnerability. Within 2 minutes of speaking to Dee, I just collapsed. With every supportive text, weekend visit and comforting word, she has been a pillar in my life that has withstood so much stress, emotion and pain. I love her dearly, and I will try my very best to be there for her in the same capacity that she has been there for me.

My best friend Luke is to thank next. I hope he doesn’t mind me saying, but he has had his own fair share of battles with mental health. When I was living and working in the US, I spent nights worrying about him and speaking to him as often as possible. I always wondered how vulnerable he was, how things were going for him and if he was managing to win his battles. It was hard being so far from a friend you knew was suffering. He has a wonderful girlfriend and seems better at managing these days, or so I hope. I can’t say, though, because he somewhat selfishly always speaks to me about my situation, asking how I’m feeling and providing a reasonable voice when I feel worried. All this, as well as making me laugh more than anyone I know (my fiance Anna is close second here; she won’t appreciate being second, though). Every time I see him, I cry with laughter at least once. The positive effect on my ability to fight cannot be understated. He’s been my best friend since we were both in school, and his intelligence, wit and enormous heart continue to surprise me every day.

Finally, my fiance Anna. She has had a good amount of air time in this blog but it is mostly in passing, during The Road to Diagnosis series and in other places. We only met 2 years ago. If the Covid pandemic had not occurred, I would have still been living and working in Philadelphia, US, and I almost definitely would not have met her. We met during lockdown 1, and within 3 months were looking at properties to buy together in London. When you know, you really do know. I thought it was a cliche but I’ve felt it. Meeting Anna has proved to me that sometimes things are fated to happen. If I hadn’t met her, I don’t know how I would be dealing with my cancer diagnosis. That isn’t to discredit the role of friends, family, and everyone else, but Anna is constant support for me in a way that only someone you love can be. She teaches me so much every day through her kindness, her ability to laugh at everything and how she can wear pyjamas during every work call; it’s quite impressive how little she dresses for work these days. I can’t wait to see what our lives bring us and she’s one of the main reasons I’m fighting this cancer with the force I am – I cannot stand missing all of the things she’s going to do in her life, and I refuse to not be part of them.

Of all the talk of positivity and hope, I owe so much to the actions of others. I do not stay positive every second of every day, and I don’t expect myself to be. Suffering alone is tough. The hard miles come during the sleepless nights, the nausea-laced days and when the ruthless nature of the cancer is more prominent in my mind than the possibility of survival. Small actions of kindness, a handwritten card, some gloves, unannounced flowers, all represent another human’s empathy and want to contribute to something otherwise out of their control. It isn’t about the present; it’s about the human spirit they represent. The text messages, comments on the blog and random exchanges on Twitter. They all contribute to a feeling that I am not alone in this.

To close this post, I encourage you to invest in the people around you. Whatever your support network consists of, nurture it. Life is unpredictable and changing. Without the help of others, we are far less capable of coping with the curveballs it throws at us. Something that I am changing my opinion on is social media. Twitter is allowing me to seek out other pancreatic cancer patients, survivors and experts that I would not have connected with otherwise. Their many posts, interviews and articles are a wealth of knowledge, encouragement and support. Used in the right way, it can be a museum of information tailored to your needs. I will post a link to the blog’s Twitter account below. Please follow if you so wish by clicking on the Twitter icon. It’s another growing support network in my struggle, and I look forward to seeing where it takes me.