WeightWatchers, The Antithesis

The Road to Recovery

2015 – The Weight Training Days; My Head Looks Tiny

How long does it take to put on weight? Is 8 days enough time to put on considerable weight, or is there a significant delay between eating the fatty foods and putting on the body fat? These are the questions bouncing around my head as I stand on the scales this Thursday morning to see that I have lost 2 kgs since yesterday morning. Apparently, the 5 flapjacks, 3 slices of banana bread, full-fat milk and peanut butter protein shake, abundant cheese on toast lunch and peanut noodle dinner just didn’t cut it. I thought I’d had a good day of putting on weight yesterday. The scales disagreed.

My weight started at 75.45kg as I checked it on Wednesday morning. It was time to start bulking before the big operation, just as the dietician had ordered. The challenge was clear – eat as much as you can, as often as you can. If you look at the packet and see a red colour in the ‘saturated fat’ box, eat twice as much of it. Fruit is fine, just dip it in butter first. Strawberries and cream? Throw those strawberries in the bin and double the cream. Double the double cream. Do they do quadruple cream? Who cares, make your own by combining two tubs of double cream! Put down that banana and eat more chocolate. Why are you crying? Most people would kill to be in this position.

I have major surgery on July 8th. At my pre-surgery appointment with the dietician, she advised me to indulge in all the foods I’d usually limit in preparation for the surgery. I will be losing a lot of body weight afterwards, so the additional weight will help me over the next few weeks. She also advised me to start strength training in addition to my running as it would help me recover faster. The resulting equation makes me think of those videos that you see of athletes’ diets, where they need to take on 8,000 calories a day to maintain their training schedule. The most infamous one I can think of is the US swimmer Michael Phelps diet where he was trying to take on 8,000 to 10,000 a day during training. I’m not comparing myself to him of course, I could never eat that many calories in one day (apparently); I could easily match his world-record swimming times, though.

This morning, as I prepared myself to step onto those scales again, I had a satisfying feeling running through my body. “I ate so many buttery things yesterday,” I thought to myself, “I’m going to weigh so much today.” As I took my place on my pedestal, ready to accept my ‘greatest gainer’ award, I watched the numbers bounce around. Eventually they settled on a number that I wasn’t expecting. 73.3kg. I’d lost 2kgs.. Well, damn it. I’m sure your weight does vary a lot based on how much water you have drank, how much food you are processing at the time etc, but this still felt disappointing. I’ve never felt so disappointed at losing weight; I’ve rarely felt anything about weight. I’ve never weighed myself consistently enough to care.

The truth is, I’ve never paid much attention to my weight. I’ve always exercised enough that it hasn’t been a problem. My family also seem to benefit from good metabolisms, as far as I can tell. We’re all quite skinny, but everyone does also exercise a good amount. We were brought up seeing my parents being active. It’s always been the way with us – you need to keep fit enough that you can eat an obscene amount of cake and feel absolved in doing so. I watch my dad do it every day, although he has slowed down on the exercise now he is in his mid 60s; the cake eating is going as well as ever.

When I was 16, exercise was all about weight training. The only cardiovascular exercise I did was when playing squash. This continued until I was about 22. I then started to commit myself more to running, cycling and other, more cardiovascular-focused activities. The dopamine hit was getting addictive and I didn’t care so much about having a muscular physique. My main objective was to look good when I was weight training, but I was realising that feeling good was a much more attractive prospect. Cardio made me feel much better than weight training. I clung on to the weight training for another few years, not wanting to lose too much of my muscle mass after so many years of hard work, before throwing in the towel completely when I entered my first marathon. Run run run – that was my new life. Harnessing my inner Forrest Gump, I decided that the running life was for me.

It was a few years later, in 2019, that I started to weight train again. I was living in Philadelphia in an apartment paid for by the company. There was a gym in the building. It wasn’t amazing, but it was right on my doorstep. Closer, actually. It was in my basement, just an elevator ride away. I felt like my running was stagnating and I couldn’t figure out why. The training was brutal – 6 days a week, 45 miles or more total distance – but I always did it. After doing some research online, I’d read that strength training is an essential part in improving your running. That convinced me to figure out a new strength routine and make room for it in my busy workout schedule. I’d get up at 6am to go to the gym, or I’d finish my run in the basement. It was nice to be back to the weight training with a different purpose beyond getting ‘buff’. I was using lower weights and doing more body-balance type exercises.

When covid struck and I was brought back from the US, I didn’t bother joining a gym. They weren’t open for a few months because of the lockdowns anyway. Running was still a staple in my schedule, as I was now training for the 100-mile GB ultra, which I was due to do with my brother, Greg. I randomly ran a marathon one Saturday as part of my training. I felt like I was fitter than ever. All that running took its toll, though, and I sustained a knee injury. After seeing a physio, I discovered that it was caused by an imbalance in hip strength. The strength training was back in the fold and I had a plan drawn up by the physio of home-friendly workouts. One of the exercises required me to fill a backpack with books and do one-legged squats… only in the pandemic would you find me filling a bag with books and using the lounge furniture as an exercise bench. What a novel time that was!

It was around this time that I discovered yoga. Once my injury was better, I relied on yoga to keep my muscles in good shape. The strength training was gone, but the yoga improved flexibility and ensured that blood was flowing to those tight places. I was always finding excuses to get rid of the strength training again – it felt like old ground to me and I had done nothing but that for years when I was younger. Yoga and running were now my staples and remained so until I fell ill, ceasing all physical activity until a few cycles into chemotherapy, when I realised that I could still run. It’s been tough but I’ve managed to achieve some consistency these days. Towards the end of chemotherapy, it got very difficult, but I do around 3 or 4 days running a week now, even if it is mostly 5Ks.

On Wednesday, I signed up for the gym across from my parent’s house. It is a small gym, located above a few shops and accessible by a door around the side of them. You make your way up a staircase to access the gym. It is actually the first gym I ever went to when I was about 14. It has changed hands now, has been refurbished and is open 24 hours a day, accessible with a fob. As I walked around it on Wednesday after being inducted, it felt strange. I’d spent so much time in there when I was younger. I remember watching a particular developed guy that was in my year at school doing the max weight on the chest press machine when I was younger, and wondering how on earth he could do such a thing. It was amazing to me. There were about 8 people standing around him watching him do it. It was impressive for a 14-year-old. My dad used to participate in a competition on the rowing machines – who could row 2500m the fastest. He was top of the leaderboard, despite some of the other competitors being nearly half his age. It made him proud. I’d done it a few times with him, but it wasn’t for me.

After going to the gym on Wednesday, I then went running with my friend, Finch. I only did 5K. My legs felt like jelly for the initial 10 minutes after doing squats for the first time in 2 years. Perhaps that is why my weight was so low this morning – your muscles have to break down before they build back stronger, right?

Maybe I should be lowering the amount of exercise I am doing. It feels so unnatural to me to just cram calories and not balance it out with more work, though. I’ve never been a fan of eating for the sake of eating. I know that this is different as I have a good reason to do so, but I can’t figure out what the right balance is. The thought of eating so much high-calorie food and not countering it with some sort of exercise just doesn’t seem natural to me. Usually, I’d do a long run which would allow me to eat anything and everything in sight. Burning calories is the mechanism which permits me to take more on. I’m doing that to an extent, but I’m not used to watching my weight so closely in the process. Perhaps I’m overthinking it all. I know that I have stepped up the amount I’m eating the past few days. Surely that will result in me gaining weight eventully. Tuesday night I made a mushroom and miso risotto. Piling my plate up higher than ever, I thought I was excited to eat it. By the end, I had to go to bed early because it made me feel so sick. I’d overdone it. That day I had been out for lunch too – I even got a dessert in the middle of the day. What luxury!

So, at around 11am today, I made my way over to the gym again, feeling more determined than ever after my disagreement with the scales that morning. As I left, I saw a bee struggling on the floor. It was on its side and only occasionally moving its legs. I remember seeing on the news that if you see a bee in this state, they probably need some energy. My mind considered just leaving it be – the nature documentary approach – what happens in nature, happens, and who am I to play God with it. I couldn’t do it; God is in my name afterall. I ran back into the house, stirred some sugar into water in a small glass, then went outside and trickled it next to the bee. Satisfied that I had tried to do something (which was better than nothing), I proceeded to the gym. There was a woman outside smoking. I made my way up the stairs and into the weights room, deciding to start with a few back exercises before moving on to working on my chest. Then I’d do legs, before finishing on arms. Easy.

Halfway through my routine, I walked into the cardio room to get some more water. The woman who had been outside smoking was sitting on the exercise bike, leisurely turning the pedals and watching videos on her phone. “She’d be better than me at putting on weight,” I thought to myself. Has there ever been a stranger brand of jealousy? Stop it, Dan. Bitterness won’t increase your weight. Your judging someone on silly things anyway – all of the professional footballers used to smoke 50 years ago and they were healthy. Not as healthy as the ones who didn’t smoke, but you know what I mean. The doctors were probably still recommending smoking at that time, stating it helps you to lose weight; maybe it does help you lose weight… Good job I don’t smoke. I’d be eating my cigarettes now if I did.

I was in the gym for about 50 minutes. As I walked up the drive when I got home, I remembered about the bee I had attempted to revive. The bee was standing upright now and there were ants everywhere, including one standing on its back. An unconsidered and unwanted result of pouring sugary water on the floor was that the ants were now having a field day. They seemed to be mostly leaving the bee alone, at least. The bee was using its legs to wipe its face. It seemed to have more energy than earlier but it still wasn’t flying off. I tried to poke it a bit, but that didn’t seem especially helpful. My David Attenborough moment was here. Although I want the bee to live, it was beyond my control. I stood up and wished it well, before making my way inside. It was time to eat again; I didn’t feel excited.

Prescribing Pizza

The Road to Recovery

Lucy Begging for Creon

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pre-Operation Probe

The Road to Recovery

Baking Bread – The New Morning Routine

The past few days have flown by and I’ve barely been cognisant of how long it has been since I last posted. This morning I checked and saw that five days had passed. Readers may believe that I’ve been in a paralysed state, terrified of surgery and cowering from the outside world, too stressed to interact with it. Thankfully, the opposite is true. I’ve been overindulging in plans, getting out of the house and keeping myself busy. I’ve seen a lot of friends and family and had a lovely few days. Particularly inspiring was my friend Flo’s speech at a University of Bath Alumni event. Last year, she rowed across the Atlantic with two of her friends, becoming the youngest female team to ever complete the 60-day journey. Her speech was centred around the theme of ‘opportunities’ and taking them. It was extremely inspiring and even included some embarrassing pictures of us from university on the screen. Larissa and I were giggling as they flashed up behind Flo whilst she spoke. But today is Monday, and Monday demands a return to normality; a banging drum that reminds you of the seven-day cycle to which you must adhere. When the weekend’s potential is spent, you are forced to readdress whatever is sitting on your to-do list.

Larrisa, Me, Flo at the Bath Event

I woke up with a few things on my to-do list today. Bake bread, fill in the online questionnaire for my pre-op appointment at Manchester Royal Infirmary (MRI), attend the appointment at MRI and, of course, finally write another damn blog post. It isn’t necessarily in that order of importance, but it is in the order of service. As I write this, at 11:50am, I have left the bread to prove for the final time before going into the oven, have baked some ginger biscuits and have filled in the online questionnaire for the hospital appointment. No doubt I’ll have to come back to this post and continue writing several times over the day, making editing it a labyrinth of differing tenses, incorrect assumptions and interesting events which demand inclusion after the fact. That’s fine, though. I guess the game for the readers is to spot these things now – a sort of ‘Where’s Wally? Ebb and Flow’ edition, where you’re on the lookout for grammatical and contextual inconsistencies as opposed to a man in a red and white striped top.

My family and friends have come together well in response to the news of the surgery. Mostly. There has been the odd moment where I sense someone is more upset than they’re letting on, or where I feel a little let-down at the lack of support, but these things are quite normal I find. Besides, when I feel let down, I recognise that more as me demanding more from someone than they are perhaps able or willing to give at that time. That helps me move past those thoughts. It is much better to make a beast of yourself and never rely on anyone else for any support, ever. Of course, I am being facetious, but you do have to become thick-skinned when dealing with cancer. No matter how supportive your network is, they can’t be there all of the time. You still find yourself laying in bed at 5am, unable to sleep and frustrated with the world. Those are the moments where you feel most alone and your ability to cope is really tested. Mine is standing up to scrutiny so far. The only time I have cried since finding out about the surgery was when I was trying to comfort my brother Greg on the phone, only to spiral off on a tangent and spit out sentence after sentence of doom-speak. Perhaps I needed that; I’ve felt very positive ever since. I am frequently waking up at 5:00, which is annoying.

The appointment at the hospital was at 14:30. I wasn’t really sure what a pre-op appointment would consist of. There are a few things that I could have guessed would occur – at least one blood test (they never let you out of the hospital without taking some of that red gold from your veins when you have cancer), a long questionnaire and at least one thing that I didn’t expect but that is very uncomfortable. Guess what, it offered up all three. My favourite kind of hospital day.

First up was the questionnaire. Considering my surgery is a major one that may last from 9:00 until 18:00 in the evening, I don’t mind answering a long list of questions. It is probably required more than ever. I’m hopeful that I’ll be under every type of drug available to man which will make the experience more pleasant for me; if I have to answer 5000 questions to make that possible, then so be it. I’ll talk to you about the inner workings of every bowel movement if it grants me the top tier of pain relief. Hell, I’ll let you observe me on the toilet and then study the result with you if it’ll convince you that I can withstand 5kgs of ketamine and a couple of barrels of general anaesthetic.

It was during this questionnaire that the uncomfortable moment revealed itself. “Have you been admitted to hospital in the last twelve months?” The nurse asked me. I responded by telling her that I had been admitted to King’s College after my diagnosis, as I needed a stent installed in my bile duct. That is where she warned me that things were about to get a bit ‘unusual’.

She went to a medical trolley which sat in the corner of the room and opened up a drawer. Out of that drawer, she pulled a sealed plastic bag. Inside was a double-pronged cotton bud with a very long plastic stick to hold. There was then a long plastic tube which the cotton bud could be screwed into. “You need to insert this into your anus until there are faeces on the end of it. It’s to detect a bug that you may have picked up whilst in hospital.” I broke out laughing almost immediately. It was funny as I had just done a swab on my inner thigh and said to her “it’s quite a weird sensation rubbing a cotton bud there – you don’t often feel things in the crease between your leg and your thigh,” to which she had replied, “it may be getting weirder after this next question!” She was right – it was weirder than rubbing your thigh.

I’m not going into too much more detail about what happened afterwards, but you can see why I had bowels on my mind during that previous paragraph. What I will say is this, pushing something into your bum for the first time is a little disconcerting. A part of me wanted to go back and ask the nurse to help me, but I thought that might be a little awkward. She didn’t extend any offers when she told me the task at hand. I’m assuming that she may have done that when she was young and naive, only learning through experience that by offering you do in fact have to assist if they call your bluff. I would have been calling her bluff. I thought about asking my fiancee Anna to come and have a go. That has the potential to kill the relationship, though. “Hey honey, can you push this far enough into my anus so that a little bit of faeces is visible on the end?” There isn’t really a way to ask that question without it killing a little bit of your relationship at least. My mum was with her in the waiting room too – it might be a little embarrassing to broach the question with her there. I’m now writing it on a blog that many of my own family and my fiancee’s family read so I guess I’m not actually that embarrassed about it all. It’s knowledge sharing, Dan; someone else might be reading this in anticipation of their own pre-op. Just keep telling yourself that. That makes it way less weird that you’re writing this on the internet to be consumed by anyone, including your own colleagues.

The rest of the survey was pretty dry. The nurse had a nice and dry English humour about her. That makes it better. She sent me back to the waiting room and told me that I’d shortly be called to do bloods and an ECG. I was also told that once my bloods are done, I will have an opportunity to meet with an anaesthetist to talk about that side of the procedure in more detail. After returning to the waiting room for about five minutes, I was called into the bloods office.

Bloods were pretty normal. Me sitting there clenching my arm, pointing out that I have a scar on my vein from the number of times I’ve been stabbed in it. The nurse also had a dry sense of humour – perhaps working in a highly stressful environment, full of intense emotion and anxiety leads one to blunt their emotions and actively seek humour, wherever they may extract it from a situation? Just a thought. The true extent of this humour didn’t come out until the ECG. “Take your top off then, let’s have a look at you,” she said. I warned her that I had a lot of tattoos; she told me that she was still married. As I lay on the bed with her attaching stickers all over my body, I started to discuss where the incision may be on my stomach. I have a tattoo of a man dangling from a star in the middle of my abdomen, starting just below my chest and finishing just above my belly button. I told the nurse that I’d been wondering where the incision would interrupt the tattoo – whether it would mercilessly kill the man directly, or whether it would cut off the rope which we assume is sparing his life. She told me she wasn’t sure. I told her that it probably didn’t matter either way, as he’d be dead whether it was him or the rope that was cut. I think I’d reached the boundary of her humour with a patient – she probably thought I was sympathising with the tattoo a little too much for it to not be a projection of what I assume would happen to me during surgery. I really did just think it was a funny concept; it’s one of my favourite tattoos and it’s being ruined – I have to find the humour in it somehow.

The Tattoo on My Abdomen

Back to the waiting room in anticipation of the meeting with the anaesthetist. Anna pointed out that they are some of the smartest people in the medical profession as they constantly have to keep calculations in their heads; I still question this. If an accountant does not have to do any adding or taking away without a calculator, why would an anaesthetist have to figure a lot of important information out in their head? I wasn’t buying that. I’m sure they are extremely intelligent people, though. What I really want them to be is incredibly liberal. That is far more advantageous for me. Drugs, drugs, drugs. I want them to feed me so many drugs that I wake up in 2031 when they have finally found the cure for cancer and are administering it directly into my brain, toe or elbow; wherever they have to stick the damn thing to get rid of it.

Another five minutes or so and we were called in. I have to give it to Anna – this woman did have an aura of intelligence about her. What she was saying, however, was less impressive. I sat there as she described how I’d have a drain in my body, how I’ll likely have a line in my neck, and how I might need an epidural. I’m not sure what my face looked like as she was speaking, but I’m pretty sure there was a blatant look of concern slowly forming in my expression. There were so many words that I did not want to be hearing in relation to my body. Even the whole “if we need to give you a blood transfusion, are you ok with that?” thing is a little bit much for me – I immediately just imagine bags of blood and want to throw up. Maybe all the blood that I’ve been giving to the hospital will benefit me in the end, when they give me a load of it back to try to save my life after an operation… hopefully that won’t be necessary, though. I know that they don’t really keep your blood after blood tests by the way, but it’s fun to imagine the staff constantly adding it to a large oil carton with a ‘Dan Godley’ label on the side.

I left the conversation with the anaesthetist feeling more queasy and anxious than I’ve felt in a while. It was a healthy dose of reality – that this is really happening, that it is really complex and that it is actually happening soon. 9:00 until 18:00 – that’s more than the average work day. I don’t even wake up feeling well-rested afterwards. The anaesthetist warned me that I’d be very tired for a week or so. That was probably underselling what the worst of recovery is. I haven’t heard many who have come out of major surgery only complaining of how tired they are, but I guess I’ll be finding that out the hard way.

And that was that – the pre-op was done. Assuming that I don’t fail any blood tests or get told that I have one of these bugs from my previous hospital visits, I should be good. Tomorrow I’m back at MRI for a meeting with the dietician team. Hopefully, they won’t require me to put anything in my anus, but I won’t assume too much. You can never be sure what might happen with these appointments; once upon a time, I went to A&E expecting to be home at an annoyingly late time but with my abdominal pain sorted – that meeting spiralled into 5 weeks of uncertainty before receiving a cancer diagnosis. You never know what life will throw at you, but you start to get an idea when you still find yourself frequenting hospitals eight months later… sometimes you get told you have cancer, sometimes you stick a swab into your anus, and sometimes you probably do both. At least those things were eight months apart for me.

Surgery Date

The Road to Recovery

You’ll have to excuse the constant posting about surgery, but it is a bit of a hot topic at the minute. The headline is that I have a surgery date – Friday, July 8th. I need to get to the hospital nice and early – for 7:15am that morning. Upon hearing the time, as the scheduler spoke to me on the phone, I briefly thought to myself, “I’m going to be shattered,” but then I realised that I am going to the hospital to be put asleep/knocked out for approximately ten hours during surgery, followed by days in intensive care recovering from whatever they manage to do to me to improve my cancer. I’m pretty sure I’ll find a way to not worry about how tired I may be after my 5:30am wakeup on that first day. That was a thought that certainly didn’t age well in the five seconds it existed in my head; I travelled from an innocent thought about being tired, to tyrannical thoughts about surgeons playing Operation on my real-life body. Come to think of it, the Whipple procedure may have been thought up as a surgeon was playing the board game Operation considering the aim of the game is to remove all of the organs out of a body; that doesn’t sound too far away from what the Whipple procedure aims to do to your digestive tract.

The surgeon told us in our first meeting with him that the best-case scenario will require about ten days in the hospital. The worst-case scenario that he has experienced with someone he has personally operated on was two months in hospital, where there were many complications. Luckily, he has never had anyone die on him, but he did say that a colleague in his team has. I think that was a veiled dig at his colleague; these surgeons are a competitive lot, even in the most serious of circumstances. I left the hospital thanking the universe that it was him performing the operation and not his colleague, even though I’m sure his colleague is a very skilled and diligent individual. I just don’t want to chance it, really. Although, given that it is such a long procedure, perhaps they work it by tagging in different members of the team like a wrestling tag match. Damnit. Don’t think of it, Dan. It won’t matter to you no matter what happens, you’ll be out like a light.

Specific complications that the surgeon called out included the pancreas leaking pancreatic fluid, the patient needing blood transfusions and I must have blocked out the rest of the list because I can’t remember any more examples. Leaking pancreatic fluid sounds pretty gross, I know that much. I remember him telling me that Nano-knife works by applying a small shot of electricity. The shock is supposed to be small enough so as not to produce too much additional heat, but I think he said that there is a risk that the heat could damage my organs. Maybe I’m remembering that wrong, I’m not sure. The meeting is a little hazy now, so trying to piece together the specific things that were said, and why they were said, is difficult. He definitely spoke about how the Nano-knife technique produces a small amount of heat and spoke about why they wanted to minimise this, but I think that I was high on adrenaline at this point and simply nodding my head and smiling, in a picture probably reminiscent of Christian Bale in American Psycho. For some reason, I always find myself being more upbeat in these meetings; I’ve probably creeped out every oncologist, doctor and surgeon that I’ve met who has been involved in the process. During my diagnosis, I actually started laughing when the doctor said “it’s bad news I’m afraid.” I couldn’t help but feel like I was in a drama on TV and couldn’t believe the news was actually being delivered like this. I was waiting for the Eastenders theme tune to start playing, but it didn’t.

There are a few questions that the surgery has raised, but the most important one is this: is five weeks enough time to recover and go on my stag do? We’re assuming so because otherwise a lot of plans have to be changed. What plans specifically, I’m not sure, as I wasn’t invited to the sleepover where they all drew up the sinister blueprints for the weekend. Luckily, I have literally centimetres of cancer in my pancreas (2.1cm to be exact), so they aren’t allowed to physically or emotionally traumatise me too much. That is how it works, right? Surely I’m not expected to join in with the Frosty Jacks boat races or anything. If Frosty Jacks boat races were not on the agenda already, I’m certain it will be after my best man Luke reads that sentence. He’ll kick himself for not putting it in the schedule already.

For those of you who don’t live in the UK, or who lived a much healthier teenage life than me and my friends, Frosty Jacks is a cheap cider which has an alcohol content of 7.5%. When we were younger, you could buy a 3-litre bottle of it for about £3.50, which is absolutely crazy. It has something like 22.5 units in a bottle and we drank them quite religiously from the age of 16 to about 18. If I tried to drink it now, it may actually kill me, both because it is almost certainly 99% chemicals, but also because the amount of alcohol in it could last me six months with my current drinking habits, or lack of. The thought of actually drinking a 3-litre bottle of Frosty Jacks over the course of six months is so sad, come to think of it… And for those of you who don’t know what a boat race is, it is where you split your group into two teams who compete against each other. The two teams face each other on either side of a table. Starting from the same side, both individuals start to down their drink. When they finish, the person next to them can start drinking. That means that everyone focuses on the one member of their team who is currently drinking, making it quite a high-pressure situation, especially when you’ve already had a few drinks and are getting competitive. The winning team is the one that finishes their drinks first. A truly remarkable game to be discussing in a cancer blog, I’m sure you’ll agree. I haven’t played it in years and have no desire to, but we have to keep the blog content fresh somehow – it can’t all be ‘cancer this’ and ‘cancer that’!

One thing that my best man has shared with me is that he has started baking bread over the weekend. That got me riled up, as I’ve been meaning to start baking bread for a while. So yesterday, I baked my first wholemeal loaf. It actually went pretty well. Today I did it again to test whether it was a fluke. Another success. It’s actually quite easy and makes eating it far more rewarding. Tomorrow, I’m going to try and bake a wholemeal spelt loaf. I know what you’re thinking, “that’s got an entire additional word in the name!” It’s a crazy thing to dare to do, but I’m going to do it. Replacing the wholemeal flour with the wholemeal spelt flour might just be the downfall of my entire bread baking career. If it goes well, though, it’ll mean that I have two types of wholemeal loaf to make in future. High risk, high reward!

Half way through making some banana bread this afternoon, I received a call from Macmillan at Manchester Royal Infirmary. After my meeting with the surgeon last week at the hospital, I had spoken to the nurse about how I was feeling about things. I mentioned the financial concerns I had, which have been ever-present for months now ever since my employer made it impossible for me to return to work, yet only paid me a month’s full salary. Very nice of them. I truly believe that their HR department could receive ‘Worst HR Department in the UK’, which would be nice for them; I’m sure it is the only way they’d ever win an award.

Anyway, bitterness aside, the nurse had told me that she will get one of the Macmillan representatives at the hospital to call me and chat to me. Every time I see an ‘0161’ number calling me, my heart stops a little bit as it is the area code for Manchester, where the hospital is located. I’m always assuming it’ll be someone telling me some new development about my cancer. It was a relief to hear that it was Macmillan. The representative I spoke to was incredibly helpful. She spoke to me about all of the things that concerned me, offered to speak to my mum to further support her and said that she would get the financial advice team to call me after I have been discharged from the hospital, after the operation.

There was something in particular that she said which has really stuck with me and has given me such a lovely perspective. She stated that surgeons won’t decide to do something unless they see value in it, and that they believe that the pros will likely outweigh the cons of doing it. After all, it isn’t only my life at risk, but their own reputation (and pride too, probably). These decisions are highly calculated and scrutinised by an entire team of extremely skilled individuals. Not only that, but this is an expensive procedure to perform, requiring a complex surgery with a lot of equipment, and a long period in hospital afterwards for aftercare. Going ahead with it must mean that they perceive it worthy of that cost, which could be used elsewhere, for another patient.

Although I had thought of it in many different ways to help me process the news, I really hadn’t considered this one. It made me reconsider so much of the conversation that the surgeon had with me. He is always going to focus on the risks, concerns and potential issues – all of this information is incredibly important. If a patient walks out of that office not understanding the full extent of the consequences of agreeing to such an operation, they could end up agreeing to something that they, in fact, do not consent to at all. It is, therefore, the intent of the surgeon to ensure that the severity of the situation is communicated in the clearest of terms – that there is little evidence of how successful Nano-knife may be, that the operation is a major surgery and carries a lot of risk, and that my general diagnosis is a damning one, especially statistically. He also pointed out that most people in my position wouldn’t get an operation at all, but I am getting one, so they must see something different in the situation. Whether it is my age, health or diagnosis that they see as ‘different’, or a combination of those things, I don’t know. I don’t care, of course. I’m grateful that they made the decision that they did and I need to remind myself of that when I am fearful or anxious about the surgery. Surgery is what I wanted, and it was not guaranteed at all. It does create a strange dichotomy between the excitement of achieving that goal, yet knowing that it means I will be having a big operation, but that’s ok. Life is full of situations which leave us emotionally confused, being pulled in multiple directions at the same time. We are complex beings; we cannot expect ourselves to always feel certain we understand how we feel about a situation, especially where it is complex.

There is one last thing which I saw today that I thought was worth talking about. As my Twitter account is for the blog, and the primary things I follow on there are cancer-related accounts, I get a lot of cancer posts in my feed. Today on my feed, I saw the below post by the actress Mindy Kaling, who was put on my radar by the series The US Office, but has had her own show since, and has been in various big-budget films.

I thought that I was glad she was posting about it to her 11.5M followers. It has to be good for pancreatic cancer, I’d think. Spreading awareness on such a big platform is a great thing. Being nosy, I went to the comments. That’s where I found an …interesting… take. The following comment had been posted:

“What you’re doing is great but children with multiple malignant brain tumors with so much treatment that they suffer a stroke and end up paralyzed and still tumors in the brain that cannot be removed to cured.

I’m honestly not sure what the central point even is here, it is so confusing how it is written. It seems to continue adding new ideas as the sentence drags on. What I do know is this – it may have been written with the best of intentions, but certainly doesn’t come across well to me at all. Why do people find a way to apply some form of elitism to every topic? What benefit is there to treating cancer like it is a new edition of Top Trumps? Mindy posting that she supports pancreatic cancer gaining funding from the government does not mean that she does not support more funding going towards children with cancer, or any form of brain cancer research. Why this person thought that this was a helpful or mindful thing to say, I do not know. The two things are not mutually exclusive. Perhaps they actually know more than I do, and the additional money would be allocated from brain tumour research, in which case it may make more sense. They have not said this, though. Sometimes I really wonder what people’s intent is – I’m sure this person came in with the best of intentions, but what help does it really provide? Is it really an appropriate place to raise such an argument?
So, I want to make this clear – when I say that I believe pancreatic cancer needs more funding, given it has the top mortality rate of any common cancer, it does not mean that I want money diverted away from any other cancers necessarily, or that I don’t value the struggle that other cancers bring. Having said that, pancreatic cancer seems to be low down on the priority list, due to an average diagnosis age of 72 and difficulty diagnosing it early enough to do anything about it (in most cases). Of course, the second issue is also probably that way due to a lack of funding, which I believe to be because it has been designated as an ‘old person’ cancer, which relates it back to point one. It is a vicious circle.

No one will say the words ‘it’s fine if old people die’ publically, but that is essentially what is happening in terms of pancreatic cancer, and I do believe that it hurts the attractiveness of the cancer in terms of research funding. I understand that having such an old average age of diagnosis is a genuine consideration when dealing with cancer and research grants, as it is much harder to save people who fall ill at this age, but it seems to be becoming unjustifiable. I regularly see pancreatic cancer charities sharing posts stating that the survival rate has not changed in over 50 years – how is that acceptable with how quickly our technology seems to move? I’m sure that the other common cancers have experienced at least some improvements in this period, if not significant ones.

The overall lesson is simple, though. Think about what you write online. It may feel like it only matters to you, as you sit alone on your phone and decide to voice your opinion on something, but by writing it, you are throwing it out into the online ether for anyone and everyone to consume at their will. I’m not sure if this comment was trying to imply that so long as children get brain tumours, no other cancer is worthy of consideration, but if it is, that isn’t fair. It isn’t fair to make people who care about pancreatic cancer feel bad for doing so, and it isn’t fair to take away from the message of Mindy’s post. No one would disagree that the things being described by them are horrific, and if that has happened to someone this person knows then I feel even more sympathy, but it is not the only consideration at play. It is also not the place to make such an argument. Would they be happier if Mindy took the post down, choosing to only post about brain tumours instead? Will she see your comment and repent, or simply ignore you? I believe the latter is more likely.

Rant over (until the next one). One day closer to surgery!

Father’s Day

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.

Surgery and Yellow Mayonnaise

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.

Stage 3: The Surgeon’s Verdict

The Road to Recovery

Lucy, Anna, Matt and I At a Comedy Night – 10.06.22

Dealing with a cancer diagnosis is hard for many reasons. People frequently comment on how well I look and say that I’m dealing very well with it. These types of comments are nice and give me a lot of reassurance and strength. I believe I deal with it quite well given the gravity of the situation. Especially when I consider how quickly it changed everything about my life – I am far less able to be active now, work has not been a part of my life for the best part of 8 months and I’ve had to move back in with my parents. That is all a lot to process, never mind with the added ‘you might die in the next few years’ also playing on my mind. My biggest attribute in dealing with it all, I think, has been simply knowing myself well and knowing how I deal with things that bother me. It may sound generic and stupid, but I really do believe it to be true. I want to discuss it a bit before I go into what the surgeon at Manchester Royal Infirmary (MRI) said today.

The first time I tried yoga was when attending a beginner’s class in North London circa 2019. I went along with a woman that I had been dating at the time. It was a weird time in my life – I had been living and working out in America for about 8 months, working on a big project that we’d won. That project had wound down for a few months as it was between phases, so I was living back in London, but I wasn’t sure how long for. There was talk of my company drawing up an American contract for me, meaning I’d be permanently living out there, for a few years at least. There was also talk of them employing more people out there, though, to make it more cost-effective. I really enjoyed working in America and was pretty hopeful that the contract would work out and that I’d be moving back. At the same time, I loved London, I loved living with my sister and brother-in-law, who I’d been living with for two years, and I knew I’d miss regularly seeing my family and friends. Having said that, I really enjoyed living out in the states and was aware that I wouldn’t have to be there forever. The first phase of the project had gone well for me, so I thought it would be interesting to keep going until the end of the whole project, and wanted to see where it could take my career. One thing was certain, though – I was in two minds about it all. There was an obvious crossroad forming in front of me and I couldn’t decide which route I preferred.

On top of all of this, the situation with the woman I was attending the yoga class with was strange. We had dated before I left for America, but we had cut it off when I decided to move abroad. It was fair enough – we had been seeing each other on average once a week but nothing had really bloomed so to speak. Since getting back, we had seen each other once to clear the air a bit, and I wasn’t sure where we were at now. I agreed to go to the yoga class not really understanding where I stood with her. I also wasn’t sure what I wanted at the time, knowing that I could be going back to the US in the next few months. It didn’t feel like we were ever dating in reality – it never had, to be honest. There wasn’t much of a connection and we didn’t seem to know how to communicate properly; the lack of communication frequently caused problems for us and left me feeling quite self-conscious. I had never really understood what her intentions were in the situation.

Communication and confidence weren’t things I had ever really struggled with whilst dating up to this point. It was the first time I truly felt out of control of a situation with someone I was seeing. It felt weird to even say that we were dating as we weren’t really. We were just hanging out. We got on really well but only ever as friends – why did neither of us just say that, accept it and move on? I didn’t understand why I couldn’t admit that to myself and I didn’t understand why she wouldn’t say it to me either. Why was I investing time in this, when I could just clearly say to her “we’re just friends,” and be done with all of the weird aspects of our relationship? We’d regularly do things together around the city and it was fun. All the awkwardness came from the fact that we had never really identified what the motivation for us hanging out was – at first, I thought it was romantic, but that theory had long faded for both of us, I believe. It was starting to annoy me.

The yoga class was fun, despite me being terrible at it. Yoga is not a graceful thing to be a starter at. You are almost definitely going to look like a total clown during your first few sessions. It is much better to do some at home and learn the basics before going to a class, but I didn’t know that at the time. This class was specifically aimed at beginners, but beginner yoga is not the same as the beginner category in other things. I’ve been doing it for a few years now and I struggle to go up to the intermediate setting on DownDog, the app I use to do yoga classes, or when finding videos on Youtube. As soon as balances are thrown into the mix, it gets much more difficult. I’m better at them than I’ve ever been, but that isn’t saying much.

At the end of a yoga session, you finish in the Savasana position. This is where you lay on your back, with your arms and legs stretched out and separated, and completely relax. Your palms face upwards and your feet relax to the sides. The aim is to empty your mind, allowing yourself to be still. It’s extremely relaxing if you are used to it; if you manage to actually clear your mind of thoughts, it is also extremely therapeutic. I did not know about this position during this class. As we went into Savasana and the instructor told us to be still and try to dispose of our thoughts, my panic levels built. I never just sat and thought about things that were going on in my life necessarily; my primary intention in life was to not think about things as my mind quickly went to bad places and made me worry. I felt much better only tackling my worries when out running, which allowed me to feel productive in tackling those problems. Even running is a distraction, though, albeit a positive one.

All of a sudden, my mind was flooded with negative thoughts. My mind was screaming at me – “Why are you getting yourself back into this weird situation with this woman?” “What happens if you agree to go to America and everything goes wrong with your job?” “Will you miss your friends too much; will your relationships with them start to break down if you’re away for that long?” It was the longest five minutes of my life. I thought I was having a panic attack but I couldn’t stand up or leave as I felt pressured in a room of strangers. It was horrible.

I remember that feeling well. Some of the details about the day are a bit hazy, but I remember the panic I felt during that Savasana. It told me that I needed to do more to address things in my life that I was not happy with. Even if that only meant addressing them with myself to help me deal with them better. It did not necessarily mean I needed to go around shouting my mind about every little thing that annoys me, but I felt that I was uncomfortable with the way I clearly wasn’t being honest with myself about things that were annoying, worrying or upsetting me at the time. The running wasn’t doing enough to help me process these thoughts. When running, you work through things in quite an indirect way, whilst endorphins flood your mind, also making you feel better about those things. It is not addressing them in quite the same way that sitting and contemplating them with a clear mind does.

This is how I am linking my anecdote back to my main point. Through that uncomfortable situation, I bettered my life. I didn’t want to enter a state of panic if I just sat still, alone with my thoughts. My thoughts should be the last thing that scare me – they come from my own consciousness and reflect things I think and feel about the world around me. If I cannot address things with myself, how can I expect to address them with the external world? I had identified something that I considered a weakness in myself and improved it. A few months later, I could easily Savasana because I was taking time to work through my thoughts, not letting them intimidate me. It made me feel more in control of my life. I consider this a key strength of mine now, and one that has been critical in dealing with this journey through cancer.

So, fast-forward to today, with me, Anna and my mum sitting in the surgeon’s office. As is normal for me, I had felt incredibly stressed in the waiting room. The anticipation is a million percent worse than the news for me. Even if the news is incredibly bad, once I know it, I can deal with it. That alone provides relief to me. Waiting around in a hospital, listening to fraught conversations around me and watching the clock ticking is the definition of anxiety, in my opinion. It is hell. As soon as I am sitting in the office and a human is looking back at me, I feel better. It’s my time to know. I was ready.

The surgeon told me a lot of things about my cancer that I did not know, as well as going on to explain what his team’s intentions were from here. Probably the biggest thing that he expected me to know, but that I did not, was that my cancer is in stage 3. The tumour has completely surrounded a major artery. He said that the scan does not seem to indicate that the chemotherapy has managed to make the tumour recede enough that it can be fully removed. There was a big BUT here, though. The CT scan image represents a shadow of your internal body. As a result, it can be quite inaccurate compared to what is actually inside you. It was a key point that I needed to understand before discussing the next options.

It was interesting that my cancer is stage 3. Straight away in my head, I couldn’t help but think that this was the third stage of my treatment so far. I had the diagnosis stage, the chemotherapy stage, and I was moving into the surgery stage. For some reason that thought made it feel better. It didn’t actually matter to me anyway; staging is something that the medical professionals use to help describe something, but it doesn’t mean a lot to me. Us muggles assume that we understand far more than we do about staging, as an oncologist once pointed out to me. “You can have a good stage four and a bad stage one – it doesn’t mean very much on its own,” she had said to me during our first meeting. I’ve held onto that. Just because stage 3 is one away from stage 4 and one above stage 2, does not mean I understand it any more than the next person aimlessly walking around the hospital and attending appointments. Don’t cling onto something you don’t understand – the people who need to understand it are the ones giving you the information and that is all that matters. I’ve got good at saying mantras to myself. They help me sleep better at night.

The crux of the conversation was that they are going to get me in for surgery. He said I could do radiotherapy now if I wanted, but he did not recommend it. Apparently, radiotherapy can cause so much scarring that it can make surgery impossible. For this reason, he recommended doing the surgery first. That surgery did not have a clear plan, though. Until they open me up and look inside, he said, they would not know whether a full removal was possible, or if it would be Nano-knife that would be utilised. Full removal is the best scenario for me but if the scan is accurate, it won’t be possible. The next option, Nano-knife, is an experimental treatment which has not been used very much for pancreatic cancer. They electrify the tumour in an attempt to kill the cells. He told me that there is little documentation and research on its application for pancreatic cancer and that it has not been used very often in this instance in particular (i.e. stage 3, surrounding an artery etc). As a result, he really didn’t know how likely it was to offer good results, but he was willing to try if I was. He emphasised that it was more likely to be Nano-knife than a full removal. I understood. He sent out a few more warnings – may reduce my life expectancy, may not cure me, and he was satisfied that we were on the same page.

We were at MRI for a few hours after that as the surgeon asked me if I’d do another CT scan. The last one was unclear and he could not see the major artery that was surrounded by the tumour. He wasted little time in calling up a friend in the radiology department, requesting an urgent scan and pushing it through the booking system. It was amazing; his colleagues clearly have a lot of respect for him. My family researched him after the appointment and he is an internationally recognised surgeon, so that is very encouraging.

My mum and Anna were both upset, my mum especially. It is hard to hear things when they are put so bluntly, but also incredibly necessary. For the first time in a while, I felt that I left a meeting at a hospital understanding more about my cancer than I did when I went into the room. Now a few hours have passed, I still feel positive about the whole thing. No matter what happens, I’m getting a surgery, whatever that ends up being. The minority of people who are diagnosed with pancreatic cancer can say they managed to get a surgery. I feel well at the minute and I’m managing to run a little and cook a lot. Those things mean a lot to me. So long as I keep myself positive and enjoy these next few weeks before the surgery, that’s all I can do.

Whether I have one year, ten years, or a whole lifetime ahead of me, will only be revealed in time. For now, I have to live every second of my life with the knowledge that this unwelcome cancer is doing its best to destroy my body. All I can do is live with that knowledge and enjoy those seconds with even more vigour. I can’t cry away my disease and it’ll only make my life more unpalatable to try. I choose to spend it in a way which encourages happiness, hope and love, as any alternative to this is too bleak for me to fathom.

I want to thank my amazing family, fiancee, friends and everyone else for their ongoing support. It means so much to me. Dealing with this without you all would be impossible, no matter how established my ability is to address my own worries and concerns. It is a strange twist of fate that I met Anna when I did – without her, this entire journey would have been far bleaker; she is a constant beacon of light, always looking out for me and helping me through the endless curveballs, emotional breakdowns and detrimental diagnoses. Let’s see what comes in this next part of the journey and hope that it is more good than bad. Either way, what will happen will happen, and I’m going to have to deal with it. There’s a strange comfort in that.

“Death is certain, replacing both the siren-song of Paradise and the dread of Hell. Life on this earth, with all its mystery and beauty and pain, is then to be lived far more intensely: we stumble and get up, we are sad, confident, insecure, feel loneliness and joy and love. There is nothing more; but I want nothing more.”Christopher Hitchens

Mental Notes on a Four-Hour Drive

The ‘C’ Word

James Taking Me and Lucy Out in His Sports Car

Saturday afternoon, I embarked on the four-hour drive from my flat in London, back to my parent’s house in Cheshire. My good friend Drew is running a half marathon on Sunday. He has raised over £1000 for Pancreatic Cancer UK and I wanted to support him on race day to show my appreciation! Anna had to stay in London as she has other engagements on Monday, so it was just Lucy the puppy and I.

I’m not a huge fan of driving anymore. It can be fun and I am a confident driver, but I’ve been doing it for long enough that the buzz of it has gone, and I’m not particularly into cars or racing or whatever else might keep driving more interesting to an individual. Driving somewhere feels even worse when I know doing so is slower than the train too, which it is when going home from the flat in London…by at least an hour. Further to this, it takes just over an hour on an average day to get out of London alone, before then embarking on the three hours of motorway motorway motorway. Because we live in South-East London, and my parents live in the midlands, it means that there is no quick way of getting out of the city to head north. To quote We’re Going on a Bear Hunt: “We can’t go over it. We can’t go under it. Oh no! We’ve got to go through it!” So you go from driving an average of 10mph and stopping every twenty seconds in London, to driving at 70mph in a straight line, fearing anything that would force you to stop, as that would mean it was a queue on the motorway. Queuing on the motorway is the only thing more depressing than driving on the motorway.

As I sat in a big queue in Kensington, West London, my mind started focusing on the surgery. It was triggered by a slow song coming on Spotify that has nothing to do with surgery. The melancholy vibe of the song infected my brain and took it somewhere dark. I dwelled there for a few minutes, before deciding that it was enough. There were another 3.5 hours to drive and I couldn’t be in this place whilst travelling, especially whilst travelling alone. I put on my summer playlist and tried to think about other things. A few hours later into the drive, when I was about 45 minutes from home, I realised that I had successfully distracted myself most of the way. It was at that point that I set myself a challenge – to write a blog post about some of the things that were going around in my head during that drive and try to turn it into a coherent post. It will probably be competing with the one on Fashion for ‘Least interesting topic for my target audience’, but I can’t always just go on about c****r and s*****y. Perhaps I’ll start a series titled ‘The ‘S’ Word’ if I keep going on about surgery. That’s the second time that I’ve used the word in this post; I’d be failing miserably if this was the start of the series, but I’ve mentioned the ‘C’ word plenty of times in this series, so whatever. I’m the only one policing it anyway, so I say it’s acceptable.

As I said, the novelty of driving has worn off for me. Nowadays, I view driving in a similar way to the toilets at service stations along the motorway; they’re necessary and sometimes I need to use them, but I aim to spend as little time utilising them as I have to, and would rather someone else took the lead whilst I sat on my phone (unsure how the final point applies to service station toilets – I’ll let you use your imagination). There is one thing that might bring some of the novelty back to driving, though.

Anna’s brother, James, has a retro-looking sports car from the 90s. It has an open-top and was apparently featured in the Goldeneye film, according to him. On my penultimate day visiting Dorset, he offered to take me out for a spin in it. Although cars aren’t my thing, new experiences certainly are, especially where they involve Lucy the puppy getting angry at her ears flapping about. She hates the wind, similar to my hatred of the sea. The difference is that the sea is easy to avoid if you want to, whereas wind is pretty much impossible to avoid all of the time. You can opt out of getting in the sea; you can’t opt-out of being blasted by the wind. Especially when driving in an open-top car. She actually uses her paws to try and hold her ears down when it is blowing them around – it is incredibly cute yet pathetic.

I have to say that riding in an open-top car is good fun. This was my first experience and I’d be lying if I said I didn’t enjoy it. Finally, I understand why people enjoy going around in them. Although I will never buy one as I do not believe I can pull it off, I have a newfound respect for them. That is until my drive back from London. As I finally made my way out of London and got onto a dual carriageway, I witnessed a man in a sports car with his roof down doing something morally blurry.

The blaring sound of sirens was ringing out behind me. Sirens are such a common sound in London that they practically send me to sleep now. Their piercing sound is as relaxing as morning bird-song to me. If it wasn’t, I wouldn’t sleep for a single second in that damn city. I’m sure this is true of any city, but I can only really speak for London as I have a very bad memory and can’t remember if it was true of the other cities I have lived in. Due to their sound being so familiar, I wasn’t panicking too much. Looking in my mirrors, I saw it charging up behind me. I was driving in the right overtaking lane at the time, and I saw a few cars behind me waiting until the very last minute to move out of the way. I’m not sure why they were doing this – just move over and let the damn people past! Aren’t we all supportive of moving out of the way of emergency vehicles as we understand that if we, or our families, were in dire need of them, we’d hope that other people would move the hell out of the way to let them through for our benefit? Anyway, I moved over into the left lane as I saw it getting closer. The roads were very busy but we weren’t standing still – the speed limit was about 40mph I believe.

As the ambulance came raging past me, I saw a car that I had watched practically refusing to move over in my mirror only a minute prior flying up behind the ambulance to utilise its status as an important vehicle that everyone needs to get the fuck out of the way for. This ambulance chaser was technically not doing anything wrong, but damn was he doing something wrong. I detested him; I couldn’t help but scorn his immoral, selfish behaviour in my head. People are hurt and he’s only thinking about how he can take advantage of the situation to get to wherever he needs to be a few minutes faster. It got me thinking – was this actually morally wrong, or am I getting wound up about nothing? No, I’m pretty sure it is wrong. But why is it wrong? At some point, after the ambulance has come past you in the right lane, you have every right to go back into the right lane. So what was wrong with this particular incident? I think it was the way that the driver was sticking to the back of the ambulance and following its every move, making it obvious that the driver is using the situation to his own advantage, trying to break through the large volume of cars clogging up the road.

Not only is it unsafe, but the stakes are higher. If there is a crash involving an ambulance, they are adding to the number of problems that the ambulance service has rather than allowing them to address those problems. It also may put the ambulance driver off from focusing on the task at hand if they see a car hovering behind them in their mirrors. I know it puts me off when a car comes flying up behind me at twice the speed of anyone else on the road, then breaks in a passive-aggressive way at the very last minute, cruising as close to the back of the car as possible until you move over. What usually happens then is you witness them speed up incredibly quickly again until they meet the next reasonable human being in the right lane, which then forces them to repeat the whole process again. I’ve always wondered what these people get out of doing this. Perhaps they are rushing to the hospital as their wife is giving birth, although I suspect they’re just total egomaniacs that think flying around the roads dangerously makes them akin to a formula 1 driver; in reality, it just makes them total idiots who are increasing the risk of someone needlessly dying on the road that day.

Driving seems to be one of the best ways to see game theory playing out in front of you. For those of you who do not know what game theory is, here is a definition from the Brittanica website:

‘Game theory, [is a] branch of applied mathematics that provides tools for analyzing situations in which parties, called players, make decisions that are interdependent. This interdependence causes each player to consider the other player’s possible decisions, or strategies, in formulating [their own] strategy. A solution to a game describes the optimal decisions of the players, who may have similar, opposed, or mixed interests, and the outcomes that may result from these decisions.’

At one point, there were lane closures on the motorway just outside of London. It was made very obvious on the big digital overhead signs that the drivers needed to move out of the two left lanes and into the two right lanes. This led to a buildup of traffic, but I wasn’t sure why. I then noticed that some people were simply flying down in the soon-to-be-closed lane all the way to the bottom of the traffic jam, where the cones would force them to finally merge over. They were then forcing their way into the right lanes at the last possible point, stopping all of the cars trying to move the traffic jam forward. It was clear that you had two choices: move over into the right lane early and join the queue, or fly down the left lane, driving past all of the suckers deciding to do the sensible thing. You would miss out being in the huge queue that had formed behind, but you would also be contributing to that queue worsening as you force your way in front of it. I watched as more and more cars followed suit and took the arsehole approach, making the entire situation worse. Some things in the world make you lose all faith in people. For some reason, this situation really did that to me for a few seconds. “Humans are all just self-serving assholes,” I thought to myself, despite it clearly being the minority of people choosing to take the selfish approach. I realised that I was over-generalising and being harsh to my fellow good citizens. I apologised and got my happy hat back on. The world and I were in alignment again.

After getting further out of London, the car gave me a warning that I only had around 50 miles left of petrol in the car. There were two and a half hours left to drive, and over a hundred miles. I told myself that I’d stop at the next motorway services to get fuel up. Lucy had been fast asleep pretty much the whole time. Anna and I had taken her on a big walk that morning with my sister, brother-in-law and their dog to tire her out. It had worked. At one point she had stood up and started to make some strange noises as if she was about to be sick. I started panicking and shouting “PLEASE DON’T THROW UP LUCY” and positioning her blanket in front of her so it could be cleaned up easier if she did. I also thought that she might think twice about it if it was her blanket, but that’s applying too much stupid human logic to a dog situation. She didn’t care less where and when she was sick. I’ve watched her eat her own sick multiple times; nothing puts her off being sick. It occurred to me that she might need a stop as badly as the car needed petrol.

Josie’s Video of the Dogs Seeing Each Other As We Met in the Park

By the time we reached the next motorway services the petrol dial was low and the estimated ‘range’ was 27 miles. The petrol station prices were extortionate – 199.9p per gallon for petrol. What on earth is going on? I was so outraged that I actually Googled ‘Why do petrol station prices vary so much across the UK’ before getting out of the car to fill up. I wanted to learn my rights, and figure out if I had any ability as a consumer to complain about this blatant robbery. I don’t. Apparently, it is mainly down to competition, as well as other factors such as supply and demand, and what price they purchased the fuel at. Of course, prices are generally high at the minute. This petrol station was the only one for miles, though, and didn’t they know it! I was their perfect customer – low on petrol and desperate. Consumer choice doesn’t exist in this situation. My fate was clear; I resentfully filled up the car and felt angry at the man, woman or child that ran this place and decided to exploit me and my fellow unorganised motorists. I swore blind that I would never let my car get this low on fuel again, so I could exercise my consumer right to choose a petrol station with more reasonable prices. I could save 10p per litre at a large supermarket and not give these bloodsuckers my money… until the next time I find myself desperately low on petrol on a motorway. It’ll probably happen sooner than I want to admit.

As I drove along with about an hour and a half left to go, my mind started wandering. I was driving in the middle lane of a three-lane motorway when I noticed a car on my right struggling to overtake me. Our cars were side by side as we flew down the road at 70mph. There was a brief second where my glance met that of the driver. It made me chuckle to myself. I started thinking of the future of driving as we move into a digital age. Roads full of automatically driven cars, moving in perfectly ordered patterns along the roads. Accidents are a thing of the past as the vehicles seamlessly travel at fast speeds, communicating with each other and ensuring that collisions are impossible.

I imagined two cars travelling right next to each other down a motorway, both containing a single passenger; one man and one woman. Their eyes meet as the vehicles zoom along next to each other. There’s a connection. The woman smiles are rolls her eyes. She’s bored of the journey. He laughs and shrugs his shoulders. They turn away, each glancing back just as the other looks away. Is it awkward? Do they both feel the same connection? She worries his car will turn off the motorway soon and she’ll never see him again. She decides to write her number on a piece of paper. Holding it up to the window, she’s written ‘Dinner?’ underneath it. He sees something in his peripheral vision and turns his head again. As he reads it he lets out a big smile and nods his head. How long would the digital, driverless roads have to exist before something like this happened, I wondered. Damn, I’m romanticising the future, aren’t I? Why am I such a hopeless romantic…

My thoughts were interrupted by a cloud of leaves flying out of the back of a van. It was an open-top one with large white bags in the back. One of these bags had blown open in the wind. The contents were blowing all over the road, mostly leaves but also small branches and clippings from plants. It felt like there was a hurricane in the middle of Autumn as the strong wind blew the leaves across the road. I was only 45 minutes from home now. It was at this point that I realised how long I’d spent creating this imaginary world in my head, with driverless roads and a hopeless love story. That was when I decided to challenge myself to write a blog about driving and see if I could make it interesting. I’ve achieved the first of those things, to write a blog about it, I’ll leave the verdict of the other one, whether it is interesting, to the jury, my readers. I’m going to bake something nice and tidy away my things from the trip to London whilst you deliberate.

Note to Self (The First Meeting With the Surgeons)

The Road to Recovery

Anna and Lucy on a Dorset Beach

Elephants and Tea – Dear Cancer Letter

Elephants and Tea have posted my Dear Cancer story under the title Dear Cancer, Every Cloud Has a Silver Lining. You can find a link to the online post here. The full magazine can be found here. You can purchase physical copies of the magazine on their website which is a great way of supporting their work. It is free to view online.

They do amazing work, providing support for Adolescents and Young Adults (AYA) with cancer. Early on in my cancer journey, I sought out several support groups to help me feel less alone. Although some of them had amazing people in them, no one was under the age of 55. It did sometimes feel isolating, as if I was the only person this young actively seeking support. Finding Elephants and Tea was a huge relief to me, and their online resources really helped me out. I was incredibly happy when they accepted my submission.

In the June edition, you can find many other Dear Cancer letters, from all different kinds of perspectives. I’m still making my way through them but have thoroughly enjoyed the ones I have read. It is also the first time that I’ve seen something I have written in physical print – exciting!

You can follow them on Twitter and other platforms (I assume, I don’t have any others). They will appreciate all of the support, whether it is having a read of their posts, buying a physical copy of the magazine or just engaging with their social media accounts.


The next stage of treatment commences: I have my first appointment at Manchester Royal Infirmary with the team of surgeons. After the disappointment I felt at the final scan results post-chemotherapy, where I went into the meeting thinking I would be getting more information than I did, I’m trying to keep my expectations as low as possible. Maybe my life goal should be to become a blank slate with no hopes, dreams or inhibitions; that would make dealing with cancer much easier. It is tempting to convince myself that this will be the meeting where they will tell me I will be having this procedure on this day and everything is ready to go, but I feel I’m setting myself up to be disappointed by creating those expectations. Perhaps I need to go into the meeting having convinced myself that they are going to tell me absolutely nothing. “It’s an induction meeting,” I’ll repeat to myself over and over again until I truly believe it. That way, no matter what happens, it’ll feel like progress. Unfortunately, I’m not a machine and my stupid emotions won’t allow that to happen.

At this stage, I feel quite sorry for the medical professionals who are dealing with my case. I’m always extremely polite to their faces and truly do appreciate what they do for me, I want to make that clear. After we were told that it may take the surgeons a month to contact me, though, Anna and I left the meeting feeling surprised. An entire month to be contacted? Isn’t that far too long? Why the holdup? Surprise turned to righteous preaching as we spoke to friends and family about the meeting. “He even told us that if they do not contact us within a month, we should contact the surgeon’s secretary! How can they expect them to be so disorganised?” We were riling ourselves up. Righteous preaching turned to minor rage. Then, we realised that hearing nothing from them for a month meant a month of true freedom. No chemotherapy, no hospital appointments, nothing. We decided to do the things we haven’t been able to: go to London, visit Anna’s family in Dorset, enjoy ourselves. I’ve settled into the new life. It almost feels like I don’t have cancer anymore, other than how bad I feel every time I go running. For some reason that is only getting worse. Also the neuropathy. Also the abdominal pain. Ok fine, it doesn’t feel like I don’t have cancer. I’m even using double negatives now; everything is going wrong.

Wednesday evening, as I sat at my friend’s house in north London having dinner, I received an automated message from Manchester Roal Infirmary. ‘You have a new appointment letter. Click here to open it‘ it read. Here we go again – back on the appointment clock. The period of peaceful bliss only lasted about 12 days. Now I’m scorning the medical professionals for contacting me too quickly. I can’t even keep up with what I want from this process; I’d hate to be them on the receiving end of my negative energy (which I keep completely contained between me, my family and my friends, and which only ever lasts a couple of days before I see how unreasonable I was being). It is why I feel sorry for them, but I don’t actually criticise them. I realise that they are probably managing a lot of cases. You need to vent about things to your friends and family, it helps you process information that is difficult to comprehend.

The link that they had text me didn’t work at first. I called home and spoke to my dad to see if I had a physical copy of the letter but there wasn’t one. “Just move on,” I said to myself, trying to seize the day and just let it be. Ten minutes later I tried again; how can I seize the day when I might have a letter telling me that I am going to have my organs pulled apart by someone I have not yet met? This time the link worked and I was in the hospital mailbox. The letter didn’t contain the words ‘we are going to pull apart your organs’, which was a relief. They went for the standard template of time, place, person I would be meeting. A bit boring but understandable. Some may find ‘we’re going to pull apart your organs’ a little too direct.

As I left my friends house, I called my parents to tell them. Once I had hung up I think it all hit me properly. I sat on the train home, holding Lucy, thinking about what might come next. In my head, I bounced between telling myself that it was good and that I need to do this to survive, whatever this was going to be. Then I thought about potentially being under general anesthetic for half a day, about a knife cutting away at my organs, about waking up in a hospital bed and not being able to see anyone that I loved. It should have made the train journey go quickly, but it didn’t. As my mind played mental table-tennis with itself, my eyes evaluated the tube map over and over again, counting the stops before I got home. Lucy the puppy was sat on my lap. She was getting irritated as I wasn’t letting her on the floor. I could see her eyes surveying it for any crumbs that she could lick up. London has been a revelation for her. As you walk her down the street, you have to constantly look out for stray chicken bones and other food that has been carelessly discarded. It is everywhere and she loves it. I didn’t have the patience to deal with her at that time and it was another thing that was stressing me out.

By the time I finally got home, I felt stressed. It took me a few hours but I managed to get out of that headspace. It has come back a bit at times, though. Last night I lay awake in bed for an hour or two. I wasn’t focused on it the whole time, but it regularly seeped back into my mental. It never felt like I was struggling to get to sleep, to be fair. I’d watch something on my phone, listen to a bit of music, read a few articles. Anything to distract myself. Eventually I fell asleep but I don’t remember when. Anna was up at 4:30 this morning for work; I vaguely remember waking up and looking around as she got ready, but not really. Luckily I slept more and I’ve felt energised today.

I’ve spoken before about how quickly humans seem to adapt. We felt it during the Covid lockdowns and I’ve felt it throughout my journey with cancer. For six or seven months, the chemotherapy cycle was everything. None of it was enjoyable, but I made it work. I’d make plans with friends to take my mind of it, joke around with the staff whenever I was attending appointments at the hospital and I’d think of things to write in the blog. It all kept me busy; the time flew by. Post chemotherapy, it took about a week to start winding down from it. Not having these regular appointments anymore started off feeling very scary. As I resumed living a somewhat normal life, I realised that it was a blessing. I can be more independent again – there really is life after chemotherapy!That feeling stuck and it felt like I’d taken a big step towards beating the cancer.

Why did it feel like that, though? I’m barely through the first phase of a complex journey – ever changing and unpredictable. Perhaps it is a defence mechanism. Maybe it isn’t such a bad thing to feel like that; it did help me enjoy life much more while it lasted. Now I have appointments looming over me again and my expectations are building and building. What are they going to say? Will I finally get some concrete answers? Why can’t I just relax and let whatever it is, just happen? Doubt is back and the reassurance of familiarity is gone; no more appointments at The Christie hospital, no more nurses and doctors I recognise. It is all about Manchester Royal Infirmary now. I’ll have to make new connections, learn new processes. Who knows what I’m going to go through in those hospital buildings.

So, this blog post is more for me than anyone else, and it is to remind myself of a tough truth: YOU wanted this, Dan! You wanted them to contact you quickly, you want the surgery (or whatever other procedure you may need to get you to the surgery) and these days you have spent enjoying your life should be the motivation for getting back to normal life, cancer-free and rocking a badass scar. You can tell people that you were attacked by a shark or were involved in a skydiving accident. Or, you can tell people that you went through a major operation, after months of chemotherapy, and likely before months more of chemotherapy. Through the years of abdominal pain, the weeks spent jaundiced in hospital waiting rooms, the shifting diagnosis, the shared tears with your family and loved ones, the sleepless nights and the fear-filled days, you fought on. You did all of that. That should be enough. Sharks and skydiving aren’t necessary. It’s time to sink or swim, and although you hate swimming, you’d rather do it than sink.

‘Sink or Swim’ with Lucy

Twelve Rounds with Folfirinox

The Chemotherapy Diaries

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

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

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

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

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

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

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

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

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

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

Coy: “Yeah, it’s been a little tough”

Forcing Sympathy: “It’s been incredibly difficult”

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

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

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

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

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

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

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

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

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

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

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

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

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