Drew Jones, a Biopic

Raising Money for Pancreatic Cancer UK

Drew and I – Taken in 2017

I’m finally coming out the other side of the Coronavirus tunnel. Our house is a hotbed for it, though. Anna started the fire about 2 weeks ago, before passing the torch to me at the start of this week, and I have now inadvertently set my parents alight with the Flames o’ ‘Rona (not the most pleasant imagery – I apologise, especially to my family). As a result, the house is pretty locked down right now. My parents are both handling it well. In fact, had we not been testing frequently because of the recent confirmed cases, I’m not sure they would have bothered testing with the (lack of) symptoms they have.

Yesterday at about 17:00, Anna and I decided to walk Lucy along the canal to get out of the house for a while. I messaged my good friend Drew and asked if he fancied meeting up outdoors and having a beer once we got to the village he lives in. He and his girlfriend Em agreed, and it was settled. We sat there, having a beer, relaxing, soaking up the evening sun, and chatting to people as they walked past – mostly about Lucy. She’s still quite the head-turner, even if she has grown a lot in the past few months. It was a lovely way to spend a few hours in the evening, and it is the first time that this chemotherapy cycle has felt like it is truly subsiding.

I’ve been friends with Drew since early on in high school. I can’t remember how we started chatting, whether it was through a particular class or not. We had a similar taste in music at the time, so that almost certainly had something to do with it. What I do know is that he has been one of my best friends ever since. He’s taken on the challenge of running his first half marathon and is raising money for Pancreatic Cancer UK. You can find the link to his page here. He’s set himself an ambitious fundraising target but, if my Run 40 campaign taught me anything, it is to shoot for something impressive when doing these things. I started out hoping for £250 and ended up raising over £7000. A sizeable amount of that total was donated after Drew shared the fundraiser in a few local Facebook groups. I even like running so Drew deserves far more money than me, although I get the impression he is growing fonder of it. If you look at the Just Giving page, he’s also written some extremely charming things about me. Time for me to return the gesture and tell a few stories. Soon I’ll write a blog post about something other than nostalgia, I swear. Soon.

The walk along the canal that Anna and I did is nostalgic for me for two reasons. Firstly, I used to walk that way to work at The Broughton Arms, a pub located on the canal in Rode Heath. The pub has a big beer garden. As soon as the sun comes out, the beer garden is as busy as a dollop of jam next to an ant nest. I worked there for about 4 years, from when I was 16 to when I went to university when I was 20. Drew also worked in the kitchen as a chef. The downside of working at the pub was that it made you dread the sun, as that meant you were going to have the shift from hell. Even worse was when it was unexpectedly sunny because that meant that you didn’t always have the number of staff you need for the shift. That meant that you never got on top of most of the jobs during the shift, and you’d be there much later than usual making up for it. When this happened, Drew would turn the music up to 11 as soon as we stopped serving food, and we’d both run around the kitchen, cleaning the plates, mopping the floors and trying to speedrun the entire chore list. It takes a special thing to make you hate the sun, especially in England where the sun is rationed like meat during the war. That is just what happened when you worked at The Broughton Arms, though. Even when you weren’t working, the thought would occur to you every so often as you sat in the sun – “I wonder how brutal the shift is today,” you’d say to yourself, as you tried to enjoy your cold beer in the sun. You became conditioned to fear the sun. Our relationship was forged in that unique feat. I’m happy to say that I have recovered from this disorder now, and I’m sure Drew has too.

The second reason that the canal walk is nostalgic for me is that we used to go that way to get to Drew’s house when we were younger. His parents have a holiday home in Europe so would go away most summers. Drew’s free houses ended up having quite the reputation and we all looked forward to them all year. We used to hang around playing video games and drinking, with some of us practically moving in for the period. He had a miniature schnauzer at the time called Hugo. I’ve heard a trope that some dogs look like their owners – I feel like this was most true of Hugo and Drew’s dad, Harry. It’s hard to put your finger on why, but I’m going to attempt to describe it (probably at my own peril)… They both initially look quite stern and serious, yet as soon as you have spent 5 minutes around them you realise that they are anything but… I can’t wait to see Harry again and see what he thinks of that. Anyway. Hugo must have had no idea what was going on during those free houses – suddenly having a house full of strangers who never seemed to leave. It was great fun, though, and he used to get involved in it. One time, he was standing staring at himself in the pond outside, I assume pondering his existence like all normal canines do when they see their reflection in the water. I went to jokingly nudge him, but the wooden floor was wet and he actually slipped in. I’ve never lived it down, and Drew still frequently brings it up. The dog was fine, perhaps a little traumatised. I think that experience made him a better man. I have witnessed a few of our friends get in that pond before and they didn’t need pushing, so that is probably more worrying.

Adam, Me and Hugo the Dog (A Very Bad Quality Picture from a Long Time Ago)

There was another time that we were at our friend Ben’s house drinking when we were about 18. For some reason, someone had brought some hair clippers with them and everyone was threatening to cut each other’s hair. As people got more intoxicated and lowered their inhibitions, there were more and more volunteers. Drew was not one of them. He resoundingly stated that no one was going anywhere near his hair. A bit later on in the night, Drew left the party to go and have a serious chat with his girlfriend at the time. They hadn’t been getting on very well, and things were on the rocks. Drew’s always worn his heart on his sleeve and can be quite an emotional guy, so we were expecting this situation to end very badly. He was quite drunk when he left, and he took a few beers with him for company. The next time I saw him was when he literally fell into Ben’s bedroom shouting “shave me” hysterically. It seemed he had decided that the best way to numb his emotional pain was to allow one of his drunk friends to give him a new haircut… Perfect! In case you’re wondering, none of us were barbers, none of us had desires to be barbers, and no one had each other’s best interests in mind when offering to cut their hair. The result is the below picture taken after a few people had fallen victim to the clippers. I have it marked in my favourites on my phone and frequently look at it when I need a cheap laugh at other people’s expense. It is a legendary photo. Drew looks particularly absent-minded in it.

Left to Right – Luke, Steve, Dave and Drew – All Sporting Some Terrible Haircuts

He has come a long way since those days. The guy owns his own record label, has an amazing girlfriend who he has been with for a long time and is now running his first half marathon. He’s even got himself a normal-looking haircut, but it’s debatable whether that is a positive or not.

Sometimes you meet people that are so unique in the world that you know you’ll never meet someone else like them. Drew is one of the best examples of that I know. Every time I see him, he says at least one thing which completely blindsides me and leaves me hysterical with laughter. He has quite a reputation among my friendship group for his choice of diction. The way he phrases things is always genius and he delivers the words with passionate vigour. It’s extremely charming of him to choose to run his event for Pancreatic Cancer UK and I know he appreciates every penny donated to the cause, as do I. If you can donate anything and want to help beat this absolute shit-wanker of a cancer, please do.

Love you very much Drew – I’ll be there to cheer you over the finish line on the day!


The ‘C’ Word

I’ve spent the past two days in and out of consciousness. The double threat of Covid and Chemotherapy has left me feeling pretty out of it. It’s a shame because the weather is really beautiful outside, but I have been managing to enjoy it here and there. I’ve tasked myself with leaving the house at least once a day to walk Lucy and I’ve managed that both today and yesterday.

Last night I woke up suddenly to the taste of bile in my throat and I thought I was choking on it. I panicked, reached out for the water by my bed and started to haphazardly drink it, occasionally stopping to cough more. I then dug out some medicine that the hospital gave me a few cycles ago, which I swore I would never need. It’s an anti-acid and paracetamol combination medicine that worked a charm on settling down my throat. How the hospital knew that I would contract Covid and need medicine for my throat is beyond me, but I’m not going to start throwing around accusations just yet. They are helping me in many other ways. I had also complained to them that my throat was consistently hurting in the mornings and I wasn’t sure why, but… damn, I’m making excuses for them. Stop trying to be a nice guy, Dan. Just accept that the hospital spiked you with Covid because they feed off your unhappiness and lust for your suffering. Giving you the medicine was just their way of reigning you back in when it eventually struck. You’re such a sucker.

After the coughing/choking episode, I was feeling pretty shaken up. My nose had also been bleeding, something which seldom happened to me before starting chemotherapy. I made my way downstairs so I wouldn’t disturb Anna. The time was about 1:15am. It’s been a while since I’ve had to grab the blanket and knuckle down on the sofa. What followed was pretty much consistent with everything that has been happening to me this week – I floated between lucid dreaming and loose consciousness, struggling to establish what was really happening and how long I had been asleep or, not asleep, in mental limbo. There is a comfort in knowing that when your body is at its most overexerted, the default reaction is to intermittently slip in and out of a sleep so deep you start to doubt your grasp on reality. It takes away all that complicated thinking stuff and just leaves you as a shell of a human, thoughts and feelings merely reflections of a consciousness that you have lost all control of.

My head was pounding as I lay there; my eyes were shut and they felt like they were a meter away from each other on my face. My feet felt like they were a mile away from my head. Everything was discombobulated. It felt like there was enormous space in the room but I couldn’t quite fit into it. I pulled the blanket over my head and cocooned myself inside. At some point, I fell asleep.

For some reason, I kept dreaming about being back in Philadelphia. I used to run on a trail next to the Schuylkill River nearly every day. I remember looking at Philadelphia on a map when I was first told that I was going to be working there for a few months, and being totally puzzled at the name of the river. It looked so out of place compared to the names of everything else on the map. For the first 3 months that I was out there, I avoided saying it for fear of making an idiot of myself. Over time, I discovered that you can pretty much say anything with a British accent in Philadelphia and people will only ever find it either endearing or entertaining. I learnt the name of the river, and it became my favourite place to run.

The trail runs for miles alongside the river before coming to an end in the city. Pretty much every running route I did would use it in some capacity. It was just down the road from my apartment and was the most pleasant space for running in the city. I remember doing intervals on it during the sweltering summer months and almost collapsing at the end of the workout. There were little bar pop-ups on the grass by the river bank at the time. They were cordoned off by small wooden fences and full of people drinking overpriced beers. It was Saturday afternoon so there was a good vibe. I shouted over the fence to a guy standing behind the makeshift bar – “Can I buy a bottle of water please, mate?” He told me that they were only taking cash. I’m not sure I used cash once in all the time I lived out there. I told him this, and, to my surprise, he gave me the bottle of water for free and told me to bring my mates back for a beer later that day. I had every intention of doing so, but I didn’t.

On my favourite 10K route, I’d run to the end of the Schuylkill Trail and come off at South Street. There’s a ramp from the trail that meets a bridge that goes over the river. You’d regularly see people doing hill repeats on it. I’d head along South St and up Spruce St, through the university on the Woodland Trail. It took you to a nice little graveyard called The Woodlands. The graveyard has a small semicircle road around it which was good to run around. It was at the top of a hill overlooking part of the city and running there at night was always peaceful.

I remember seeing an episode of the Netflix show House of Cards where one of the main characters, Claire Underwood, was running through a graveyard. A random stranger shouts “Do you have no respect?” at her, stopping her in her tracks and leaving her looking despondent. Every time I ran around the graveyard, the scene would occur to me and I’d worry that people in the states might be more sensitive to someone using a graveyard as a running track. One time when I was running the route after work, I came around a corner obscured by some trees and heard a scream over my headphones. Upon looking up, I saw a woman squatting over and peeing in the middle of the trees. Her friend stood laughing and covering her face with her hand, she might have even been filming but I’m not sure. “It’s perfectly natural! I’m not looking,” I shouted as I realised what was happening. I felt vindicated of any worry that I was doing something wrong by simply running in there – I’d never pee in there.

A Sunset in the Woodlands Graveyard – Taken 18th March 2019

After running around the ceremony, I’d run over to Walnut street via the university and head back towards the city. There’s an American BBQ restaurant called Baby Blues BBQ one street over from where I’d run on Walnut, located on Samson St. I’d heard a lot about this place, it being a favourite of many coworkers of mine who had spent time in Philadelphia. I’m vegetarian, so I didn’t have a huge amount of motivation to go to this particular restaurant, despite having an expenses budget and regularly eating out. I couldn’t imagine there would be a tonne of options for me at an American BBQ restaurant because, well, isn’t that the point? Meat meat meat! No lettuce to be sent out without bacon fat having touched the leaves. Put pork fat in the salad dressing etc. I had no problem with it, but it was never created to appeal to me.

I did eventually go to Baby Blues BBQ once. It was for my birthday, funnily enough. Some of the directors were on site for the week, and there was a larger cohort than usual wanting to eat out. One of the directors suggested that we go out for my birthday, which I was happy to oblige. The idea of Baby Blues BBQ was floated to the delight of some of my colleagues. Some of my other colleagues were telling me to take a stand against it. “Dan – you can’t let this happen! You’ll be surrounded by meat on the one day you have any clout to eat somewhere else!” These people clearly didn’t know me well. I’m a martyr and a saint – never shying away from public persecution. I saw it as an opportunity – finally, tick it off the list and be done with it. I was pretty sure they’d have some vegetarian options at least. There was one other vegetarian who regularly worked with us out there, and he reassured me that they have ‘a great selection of sides’. I didn’t find a lot of solace in this but he had eaten there before, so surely he his claim was going to be substantiated to an extent.

He didn’t have a point. The sides were fine, but I wasn’t running laps around the restaurant informing every customer that they simply must order more of the irresistible sides. I don’t think they were particularly focused on the sides either, as large hunks of meat towered across their plates and dared them to finish their meal. I ended up ordering a salad and had to reiterate a few times that I didn’t want any of the meat on it. To be fair, it was a nice salad… the kind of salad where the dressing completely defeats any health benefit you thought you’d get by ordering a salad. I’m still pretty sure I walked out of that place with the lowest calorie count, though. I was also the only person using that as a metric of how successful the meal was. I’d found my angle and I was sticking with it.

I’d then run along Walnut St and finish in Rittenhouse Square. There I’d usually pick up something to eat before heading home. If it was a nice evening, I’d sit and eat it in the square itself and watch the world go by. It’s a great spot for people-watching, with plenty of benches, trees and water features. One critique I have of Philly is that it doesn’t have a lot of green space, but I feel like Londoners are spoilt in this regard. Perhaps it is an unfair critique.

The next thing I knew, I was awake again and back in the room. My head still felt like a void between my shoulders and my mouth was begging for moisture. I reached out to find that all of my water was gone, so reached for another glass that someone had left on the table from the night before. I sipped it conservatively, seeing that there wasn’t much left and knowing that I didn’t want to make the short trip to the kitchen any time soon. It didn’t matter what time it was. I repositioned the cushion under my head, turned onto my side and closed my eyes. Let’s try this again.

Covid, Meet Chemotherapy

The Chemotherapy Diaries

It finally happened, I’ve tested positive for Covid. After avoiding it for an amount of time which can only be described as unfashionable, it’s finally got my number. I had my suspicion that this would happen. Anna tested positive a week ago today and we had been isolating from each other around the house. It all seemed to be going quite well. Saturday morning, treatment day, I was still testing negative and feeling fine. Knowing that a major impact of the chemotherapy on the body is that it impacts your immune system, I did speculate that the defence my body was currently putting up was probably about to diminish. It may have just taken this long to establish itself anyway; I had kissed Anna 10 minutes before she first tested positive, which was the most confusing part for me. However I caught it, I’m now finally part of the ‘C’ club. Not the Cancer one, the Covid one. Although I am part of the cancer club too, and I’m on chemotherapy. I even have a series called The ‘C’ Word series that tries to avoid talking about cancer. I’ve also noticed that I frequently sleep in a C shape now because it seems to cause me the least pancreatic pain through the night and in the morning. I bend my back like I’m bracing for impact on a plane, then tuck my legs into themselves. It’s very comfortable. I’m starting to feel a bit like Jim Carey’s character in The Number 23 where he starts to obsess that the number 23 appears everywhere in his life. The Alphabetical C with Dan G.

Saturday’s treatment was quite straightforward. The hospital seemed quieter than normal. I remember it being similar around Christmas time when I was in for treatment. I had asked my nurse that day why it was so quiet and she had replied that many people don’t have treatment around Christmas time, especially if their treatment is palliative. They opt to enjoy more time with their families instead. I wondered if that same principle would apply around Easter weekend too, with there being 2 public holidays on either side of it in the UK.

I arrived a little late after sleeping in until 7:40am. Oops. We usually leave the house at around this time, so it was considerably later than normal. We were only 7 minutes late to the hospital though, so it wasn’t too bad. I apologised for my tardiness as I signed in at the reception, then had to explain was tardiness was to the receptionist. She originally thought I was apologising for having a mental ailment which was extremely embarrassing for me; perhaps I’ll stay clear of using the word tardy so liberally in future. It is such a nice word, though. My name was called about 5 minutes later and I made my way upstairs to the ward.

It was all pretty non-descript from here. They weighed me, stuck the line into my port in my chest, and treatment had begun. For the first time since starting chemotherapy, I actually did very little during the session. I didn’t even use my headphones. I was just sitting watching videos on Youtube with subtitles on instead. I’m not really sure why – usually I get a good 2 or 3 hours of writing time in, and will read for at least 45 minutes. I did notice that I am becoming a bit of a chemo veteran as I eavesdropped on the various conversations going on around me. Straight across from my bed, there was a man who was attending his first session that day. He still had the dressings on his neck where they had inserted the port. I heard him say it had been installed Thursday morning. That was the exact same timeline as mine – Thursday morning they installed it and Saturday morning I was at the hospital, receiving my first dose of treatment. It felt strange thinking of all that had gone on between then and now. He seemed to be dealing with it well, though, and I hoped that was because his diagnosis wasn’t too bad.

I also heard a woman in a bed next to me boast that she was on session 7 and only had one more to go. She was dishing out advice on how to cope with some of the more uncomfortable side effects. My competitive side was kicking in and I was tempted to shout over that I was actually in the process of hitting the double-figure mark – session number 10. Maybe I’d sign an autograph for them or dedicate a blog post to them, where I impart all of my learned wisdom to them. She actually had better advice than me and was stating all sorts of hacks for the morning of treatment, the day before etc. Perhaps what I was starting to feel was inadequacy. She was recommending being extra healthy the day before your treatment; that’s usually the day I want to scoff as many takeaways and run as far as possible before I have to deal with the chemotherapy fog again for another week or so. Maybe she’s right. I should have asked for her autograph. She might have even had her own cancer blog that I could have followed. Damnit.

I left the hospital with little to report. I had baked the nurses some Almond and Raspberry slices, a recipe that contained pastry. I’d never made my own pastry before and fancied a challenge. Friday morning I did my first batch to test on my family and friends and they seemed to go down very well. Feeling confident that I was a natural – Pasty Dan the Pastry Man – I returned to the kitchen that evening to make another batch for the nurses. It went well, almost too well. As I handed them over to the nurses I said something attention-seeking and pathetic like “it’s my first time making pastry so approach with caution”. There was veiled confidence in the whole thing and I knew they looked good. Low and behold – I got ABSOLUTELY NO COMMENTS ON THEM. Of course, that’s fine. I bake for the nurses because they genuinely deserve it for being amazing people who dedicate themselves to a very tough and emotionally volatile job… but I’d be lying if I said I also liked the comments on how nice the baking was and how flattered they all are. As I left, one nurse said “I can’t wait to try one during my lunch break”. That’s what it was, they’re all waiting for lunch to eat them. I slept easier after convincing myself that was true. I’d tried them, I knew they were good. My dad had eaten nearly all of them after about an hour of them being baked, but that isn’t always a reliable test of how good something is to eat. More how easy it is to eat at that exact moment in time. It passed that test with flying colours.

The rest of the weekend was very chilled. For once, the sun came out to play on Sunday, so myself and the family had a BBQ and lay around in the garden. It was very nice. I basically spent the entire day sitting outside on the swinging chair and relaxing. Going through chemotherapy is much easier now that the weather is a bit warmer. It was quite miserable in November, constantly getting pins and needles in my hands and face and constantly trying to avoid going outside. If you want my advice, try not to get diagnosed in winter. A summer diagnosis has far more to offer the individual.

Lucy in the Sun on Sunday

It was Monday when I started getting a little suspicious of my body. It is quite normal for me to get cold-like symptoms after treatment for a few days. My nose usually runs quite a bit and my throat sounds hoarse, but I was actually coughing quite a bit which is more unusual. After digging around the house for a Covid test and not finding one, I gave up and decided that the UK Government clearly don’t want me to determine whether I am sick or not, seeing as they are charging for tests now. My dad had other ideas and immediately went out, spending about £70 on Covid tests. We then found one laying around the house anyway which confirmed my fate – it was to be a covidy, cancery, chemotherapy-y kinda week.

So far, I’ve just felt more tired than usual, which is saying something because I already do a good job at being tired this early in my chemotherapy cycle. I’ve slept most of the day away today. The blog is providing a nice distraction in the periods I manage to stay awake long enough to write something. Who knows what the standard of writing is like in this post, though, as I’ve mostly been floating through it with a mixture of geniality and unqualified wonder at whether any of it is interesting. The cough isn’t too prominent for me – it just randomly pops up every so often, politely reminding me that I do, in fact, have covid. I guess both covid and cancer are attention seekers in that respect; sometimes you forget you have them, then some side effect rears its ugly head and demands your acknowledgement. “Yes covid well done, you did make me cough,” or “Yes cancer well done, you did make me wake up at 4am feeling pain in my digestive system. You’re so smart. Now go back to sleep.”

Next on my list of frustrations for the day is my delightful employer who has randomly emailed me out of the blue, telling me that my Statutory Sick Pay is coming to an end. At least they’re consistent in their hands-off approach. The email simply read “Please see your attached SSP1 form,” which I then opened and saw that they will no longer be paying me sick pay from April 23rd 2022. Quite incredible really but I’m learning to not expect anything more than the absolute minimum from them. I’d like to think they had some form of cheatsheet for what this means and what could possibly come next for me but, again, that would be inconsistent with their general approach of “you all die alone anyway, figure it out for yourself.” Cool. I guess I better get my financial hat back on and figure out what the hell I can do next then, in-between sleeping and feeling ill from the chemotherapy of course. Never a dull moment!

Banality, A Bitter Pill to Swallow

I find myself trying to look at the current situation I am in from different angles. A portion of this is because it makes good content for the blog, but it is mainly because it is a good technique for gaining some perspective on the situation. The topic of cancer can become banal rather quickly, and regular readers of this blog may feel that the same content does get regurgitated to an extent. The fact is that dealing with cancer becomes somewhat banal, and leads to a lifestyle that reflects this reality. I try to mix the content of the blog up by dealing with specific events, like what happens during the different chemotherapy cycles, but there is only so much variation to be expected from it. I assume that no one is reading The Chemotherapy Diaries series and expecting killer demons to appear in the narrative. If they are, they’re going to be waiting a while and left feeling rather frustrated; I’ll consider it for chemotherapy session #666, but I’m hoping it won’t take this many sessions to kill my tumour.

Running with The Chemotherapy Diaries example, these posts consist of me attending treatment, spending a few days assessing how awful I feel, watching the cycle unravel in front of me, for better or for worse, and then preparing myself for the next one. This routine has become my life since November. It is the stories found within these constraints that I hope make the content more interesting and provide variation. Unlucky for me, but lucky for the series, chemotherapy does throw in some curveballs, and they help to keep it interesting. It doesn’t mean that things aren’t mostly predictable, though. I’m under no illusion that every post contains groundbreaking new content, unexplored themes or novel information about cancer. Fighting cancer is mostly a waiting game for the patient. I want to talk about this banality today, as it has been on my mind since the weekend.

I’m using the word ‘banal’ in regards to both the content of the blog, as well as the content of life more generally at the minute. Originality is a futile concept from the perspective of a cancer blog anyway – there are many of them around and the things I talk about are not unique. I hope that my writing style provides uniqueness to an extent, but I have read plenty of other cancer blogs that have their own unique tone and style. It is like claiming that every podcast on history is unique because the presenter has a different accent.

The concept of ‘originality’ in terms of life is more tenuous. When I state that life on cancer treatment becomes banal, I mean that you lose a lot of your ability to do novel things. You are constrained to a treatment schedule, as well as feeling the physical effects of the treatment on your body. Motivation to travel, even to close destinations, diminishes greatly if you can barely walk for 5 minutes without feeling sick. There is a small window in the cycle where you feel well enough to do more, but this tends to be towards the end of it, which is also where most of your pre-cycle appointments are scheduled. That means you cannot easily make plans during this part of the treatment, so your reward is usually that you don’t feel as terrible for a few days before you’re back at the hospital and doing it all again. Even simple things like eating have changed forever. Due to the type of cancer I have, I must take tablets whenever I eat. In my old life, I might see a food stall in a park and decide to try it. These days, I see a food stall in the park, realise I don’t have my pills with me and feel a renewed bout of anger towards the situation.

On Saturday, I walked into my bedroom to find my mum consoling my fiancee, Anna. She was upset because she felt that everyone around us was making plans and doing things, whilst we exist in a strange form of limbo. It is true. We have lost a certain amount of autonomy over our lives, especially me. We had made plans to go to Dorset to visit my fiancee’s family, followed by London to go back to our flat a few weeks ago. Of course, something went wrong in the chemotherapy cycle and messed up the plans. The message was clear – don’t get excited about things and, if possible, don’t even plan them in the first place, to ensure you can’t get excited about things. The cycle is king; everything else falls in line or falls off. I can’t exactly decide that I’m not going to chemotherapy this week because I would rather visit friends in London. Of course, I actually can do this, and the hospital would fully support me – they’ve made that abundantly clear. “If you ever need a break or you feel you’re struggling, just let us know and we’ll adjust the schedule,” that’s what the team said to me, and I felt extremely grateful when they did. Why would I do that, though? It would just delay the inevitable – sitting in that chair at the hospital for 6 hours, hooked up to the machine and feeling the colour drain from my face as the poison hits my system.

I’ve indulged in ultra-marathons during torrential rain – I pride myself on digging deep and doing things that feel hard. Embracing the struggle permits the downtime in normal life, but the downtime isn’t that rewarding with chemotherapy. You don’t feel proud of yourself as you fight through a haze of lethargy, sickness and diarrhoea, you just feel happy to go to sleep each night knowing you’re one day closer to finishing. Choosing to delay a cycle will just delay that end date of chemotherapy. The ultimate reward is being cured, but you don’t know if you’re going to get there. “Once you’re cured, you can have all of the fun you like”, you say to yourself, knowing that you don’t fully believe that you’re going to be cured, but also knowing that it is not very helpful to assume you’ll die either. Staying cured is even more out of your hands, assuming your idea of a good time isn’t swimming in a lake in Chernobyl whilst smoking cigarettes and eating red meat; you’re in trouble if it is, dear dark tourist.

Sunday was my mum’s birthday. All but one of the family made it back for a meal to celebrate. We had a lovely day and it was nice to get out and do something with family and friends. Life is not like this the majority of the time anymore. My old life was cadenced by plans and events – going to friends for dinner that weekend, working in the office 3 days that week, jetting off to that country in June. The gaps fill themselves without you even realising. Potential lingers in every thought – “maybe I’ll get a new job and leave London,” you think after a tough day at the office. Even if you don’t act on those thoughts, you have them and they aren’t preposterous. Planning for the future is preposterous once you’re getting treatment for cancer, especially one that is commonly put at the top of the ‘Least Survivable Cancers’ category. It doesn’t fill me with hope for my life, but there’s a sadistic satisfaction in topping a table. At least I’m winning something.

As you can tell, my bitterness is increasing. I’ve found myself quietly resenting the world around me more. Friends are starting to go on holiday, former colleagues are getting promotions or moving on to new opportunities and people are making bold decisions about their future. A simple message from a friend into a WhatsApp group asking if anyone is up for attending that festival in a few weeks is a reminder to me that life continues as normal for most people. I’m happy it does; this isn’t meant to be the start of my origin story, wreaking revenge on the world for daring to get on with their lives whilst I am struck down by cancer.

I’m allowed to feel a bit bitter though, right? I’m trying to muster up the courage to dare to claim that I might be alive in 5 years. That’s the new standard for me. Whatever I’m doing then is almost irrelevant so long as I am still living and breathing. Apart from it isn’t irrelevant, is it? I’m still a human with ambitions, desires and hopes for my future. I frequently worry that this ‘downtime’ is ruining my career, somehow making me less attractive to employers because I succumbed to cancer and the brutal means of treating it – the months of chemotherapy, the major operation and whatever else it threw at me. “Doreen worked all through her chemotherapy,” I imagine the two people reviewing my CV saying to each other, “this guy just wrote a blog for 12 months”.

Sometimes I worry I’m using cancer as an excuse for my own shortcomings… maybe I should be working full time and not using this as an excuse to salvage my time; if I’m thinking that and I know how hard things have been, what must others think? These types of thoughts clash with the revelation that these might be my last years alive – do I want to spend them working at a job or indulging myself in a blog all about myself and my selfless struggle? And with regards to the blog, is there less of my self left for family and friends to enjoy now that I choose to put everything in a medium that is perfectly consumable by anyone who stumbles across the hashtag #Cancer on Twitter? Most of my family only found out I was in A&E a few days ago because I posted a blog about it. Is that really acceptable?

The struggle is complex but the subject’s life is anything but. Occasional dinners out, seeing friends when you have the energy and writing a blog. Most of the time, these things are enough. Today is just not one of those days. I guess I’ll eat chips for lunch, that’ll cheer me up; maybe a friend will even join me. I’ve already written a blog post today.

Seven Hours in A&E

The Road to Recovery

I haven’t contributed to The Road to Recovery series for a while. I said in another post that it was likely to go quiet for a while, as the next significant stages in the process are few and far between. My next progress scan is currently expected in the middle of May. That is the scan at the end of the 12 chemotherapy sessions, and the one where I am hoping to receive good news – that I can be operated on. I did have a setback of sorts yesterday, though, which is what I want to talk about in this post.

It’s been a tough couple of days. What started as some fairly routine abdomen pain on Saturday ended in a 7 hour trip to A&E yesterday. Luckily, it doesn’t seem to be anything serious, but there were a few twists and turns that made it an interesting day. Anna and I have drawn a few conclusions from it. Firstly, if I need to go to the hospital, we’ll opt for the hour-long drive to The Christie regardless of how much pain I’m in. Secondly, I will never take the words of a man seriously if he is simultaneously trying to usher me out of a room and diagnose me with bone cancer at the same time, even if that man happens to be a medical professional.

Abdomen pain is quite normal for me these days. Since starting chemotherapy, it’s actually gotten much better than before. I still regularly get it, though, and I’ve mostly learnt to live with it (occasionally calling on my friend Codeine, but usually coping without).

Not many people know this, but the pancreas is one of the most spoilt organs in the human body. I know it because mine likes to hurt if I make it work too hard by daring to do provocative things such as eating or sleeping on my back. How dare I? As a result, I frequently get it in the morning because of how I’ve slept, and sometimes after I’ve eaten, although the pain can be a bit unpredictable around food. It’s like a hungover teenager, rolling over in bed and moaning at you as you shout “it’s breakfast!” at 11am; they aren’t happy even when you take the food to them.

The tumour impacts my pancreatic functioning. Usually, your pancreas will create enzymes that break down food. Mine doesn’t do this properly anymore, and never will again, apparently. I’ve also been told that I’ll probably be diabetic someday as the organ is also involved in regulating blood sugar levels. It is similar to Type 1 diabetes, meaning I’ll have to inject myself. Luckily I’ve been getting lots of practice in because I have to inject myself during chemotherapy anyway. I’m not sure if that is the correct use of the word ‘luckily’, but anyway. There’s no love lost between me and my Dancreas these days. It’s a shame we have to share the same body but I like to think I’m a diplomatic person. We’re making it work.

The abdominal pain this weekend was much worse than it has been. I stuck it out throughout Saturday and Sunday assuming that it would start to get better eventually. Sunday afternoon it did actually die down considerably, allowing me to enjoy a meal with my family for my mum’s birthday. Come Monday morning, it was worse than ever. After 2 hours of it, we decided something needed to be done.

I finally called The Christie hotline to get advice. From the symptoms I had provided, I met a threshold that required me to be checked by a doctor in person. The guy on the phone was extremely helpful and said he’d speak to my team and see what they suggested. He called me back about an hour later and said that I needed to get to a hospital in case I have an infection. As The Christie is an hour’s drive from my parent’s house, we agreed that going to Leighton Hospital A&E was best, as it was only 20 minutes away. He said he would let them know that I would be attending.

We arrived just past midday. I was quickly triaged and brought through to an assessment bay. The team told me that I’d have to stay there in case my immune system is compromised. Essentially, they didn’t want me with the diseased folk in the waiting room because the chemotherapy may have hammered my immune system to a point that it doesn’t really work anymore. It sounds like a luxury, but I was sitting in a white room with an open curtain, decorated only by a single plastic chair and a shelf with a computer on it. The doctors and patients were walking past and looking in like it was an exhibit at a zoo.

Within about an hour, a nurse had put a cannula in and taken my blood. She told me they were testing for infections. Then… nothing happened for about 4 hours. The plastic chair was killing my back, so I was laying on the floor in the inspection bay and trying to sleep. The abdominal pain was coming in waves. I asked for a drink of water about 5 times over the space of 3 hours before realising I was being unreasonable. Eventually, I told Anna where I was and she managed to find me; she had been waiting in the waiting room and working. I finally had some water and even a spot of company.

Approximately 4.5 hours after arriving, 2 medical-looking people were standing outside the bay. I heard the male say to the female “why are there people just sitting around in the inspection bays?” Our relationship wasn’t off to the best start.

“Sorry, I was told to come in here in case my immune system is compromised. We’re still waiting for blood test results.” He muttered a few things to himself before walking into the bay and standing at the computer. “I’ll check if your blood results are ready. We need you to move out of this bay,” he reluctantly said, among a lot of other things about not loitering in bays. He was really determined to make his problems my problems. I’m not sure what I’ve done to this man, but he seems to want to punish me for it. Maybe he thinks cancer is contagious so was angry at me for being in hospital. Maybe he has an extremely stressful job. It’s probably a bit of both. The good news was that my infection markers were normal, meaning it was not an infection. It was the information that came after that which caused us some concern.

“One of your liver markers is high. What type of cancer do you have again?” I told him that I had pancreatic cancer and the confused look on his face deepened. He explained that when only one of the liver markers is high, it is usually a sign that bone material is breaking down. He then casually said that this is a primary symptom of bone cancer. All of it was going over my head at the time; I thought he was just shooting the shit with us and giving us some information. “At least both markets aren’t high then – that’s good,” naivety lacing my every word. He turned to me and defiantly said “neither of them being high is good.” It was becoming almost comical how much this guy did not want to deal with me.

After talking more about bone cancer, asking if I’d had a full-body CT scan and looking even more concerned when I said I have had back pain in the past few weeks, he finally kicked us out. I was feeling quite jovial about the whole exchange. The animosity felt palpable; it made my rather boring day feel much more exciting. It was only when we sat down in the waiting area and I noticed Anna crying that I became attuned to what he was suggesting.

“He was saying you might have bone cancer, Dan. That’s why he was saying all those things,” Anna said. Looking back, I really was a total moron during that conversation with him. I sat laughing and cracking jokes about back pain whilst he was trying to communicate to me that he was concerned I have bone cancer. All of a sudden things weren’t so funny. I don’t think it even occurred to me that this random stranger who knows nothing about my condition would be suggesting such a thing. That’s my excuse for not reading the room properly.

I called The Christie hotline again. Anna and I wanted to leave – we wanted nothing to do with this hospital. At least we trust The Christie to not diagnose me with bone cancer without being pretty confident that it is the case. The same man answered my hotline call and he quickly comforted me. “I’m slightly overweight and have high liver functioning anyway. Every time I do a blood test they tell me that my functioning is worrying. There are loads of reasons it can be high. It sounds like you’ve suffered from terrible bedside manner.” I felt so relieved as he was speaking the words. He reassured me that they would have seen a spread in my recent scan and that, in reality, my tumour was shrinking, not spreading. I agreed to stay and see the doctor.

Sure enough, we were called in to speak to the doctor about an hour and a half later. She didn’t even mention the liver functioning. After inspecting my stomach and doing some tests, she concluded that it was probably just a bug that I’m struggling to fight off because of the chemotherapy. We then prompted her about the high liver functioning. Her response shocked us. “Well, it is a bit high but it isn’t really high. The last blood test we have for you is from 2009 too, so it may not actually be very high for you these days. These indicators can vary a lot from person to person.” Anna and I were relieved. It’s good to learn that you probably don’t have bone cancer, only hours after being told that you might have bone cancer.

So, I’m not entirely sure what went through this doctor’s mind in all honesty. I wish I had a defence for him because I don’t like slamming people unnecessarily and I’m sure he was extremely stressed. This did feel somewhat indefensible, though. I will say this…

Whilst we were waiting in the public area, a woman started panicking in a wheelchair, holding her chest and screaming “I CAN’T BREATHE!” 2 of the nurses came running through the double doors and quickly took her through. A minute later, a cacophonous siren was going off and members of staff were grabbing equipment from the corridor and taking it through. There was a mix of responses in the waiting room. Some groups chatted excitedly, some individuals seemed to slump deeper into their slumber, and some looked disturbed. I was soundly in the disturbed category. I may have just witnessed someone dying but I’d never know.

The situation hit something home for me… Many of us aren’t close to death in our daily lives. There aren’t many professions that revolve around it. If you work in a hospital, you are dedicating a lot of your time to being around these types of situations, if not directly involved in them. Death is a constant presence in them; a doctor may start the shift with someone dying, then they have to continue on with the rest of their 8, 10, and 12 hours. It really is brutal and must be incredibly taxing emotionally. Although I have spent this post criticising an individual in the medical profession for the way that they dealt with me, I really do feel a lot of sympathy for him, and others in the field. I’m not made of strong enough material to deal with this day in and day out; I get to leave the hospital each time I go and cross that commitment out of the calendar. Mortality is constantly staring these people in the face and it must completely change the way they view the world. I was witness to 1 tiny event, and I spent a long time yesterday thinking about it, hearing the shrieks and reliving seeing the panic in her face. It’s terrifying.

So, for what it is worth, probably nothing, I really don’t feel aggrieved at what happened. Hospitals are a brutal environment, full of suffering, stress and anguish. There are plenty of positives about them too – they are a place of hope, recovery and perspective-gaining phenomenon. I don’t want to criticise someone doing a job that I know I am incapable of doing, though. All I know is that I don’t have bone cancer. Probably.

A Shift in Time

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

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

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

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

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

Julien Baker – Something

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

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

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

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

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

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

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

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

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

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

Illegitimi Non Carborundum

The Chemotherapy Diaries

Another treatment day rolls around… I’m not used to having to do things on Monday mornings anymore, so it’s been an anxiety-filled morning. My treatment day is usually Saturday but, because of the last-minute change of treatment after I failed the platelets test last week, they couldn’t fit me in on the weekend. That meant it was a Monday morning job for me. I make the platelets test sound like a qualifying round for a sport. Your platelet count is a key thing the doctors check in your blood tests before treatment. If they are below 75, it is a sign that your body is still working off the chemotherapy. Mine was at 72, so I was just below qualification the permissible level to undergo treatment.

I assumed traffic would be terrible so we set off at 7:45 for a 9:00 appointment. We usually leave 45 minutes before the appointment time, for reference. It appears we benefitted from the working from home revolution as there was very little traffic. The majority of people seem to have swindled Monday as a concrete working from home day. I can’t blame them. We ended up getting to the hospital 30 minutes early. Very punctual, but very annoying. 30 minutes less in bed. Woe is me.

Not only was it Monday morning, but I was feeling extra tired. Lucy decided that she would get up at 4am last night and start whining by the bedroom door. The notion that she may have needed the toilet did occur to me, but I was desperate to sleep more and not entertain it. She had the last laugh, as I heard her little feet tapping around the room a few minutes later and could smell something rather unpleasant. “Why didn’t I just take her outside,” I said to myself as I searched the room for the source of the smell. Being a small dog, Lucy’s ‘presents’ can be hard to find. Eventually, I found them behind the armchair in the corner of the bedroom. Thank you very much, Lucy. Four whole presents and it isn’t even my birthday…

This, in turn, meant I had to wake my mum up to help me clean up and wash Lucy. Being on chemotherapy, the internet advises that you regularly clean dogs if you are handling them and stay away from cleaning up their mess. The reason for this is that you are very susceptible to disease and infection when on chemotherapy. A Dog’s excrement and urine are filled to the brim with dangerous stuff, apparently (not a vet, or a medical professional; this is very much in layman terms). You really do have to love them to want them, folks. They’re not just for Christmas (or chemo). Anna is away all week in London so I’m heavily relying on my mommy again for these tasks – she’s a saint.

I struggled to get back to sleep after the incident. It was the typical scenario – laying awake in bed, knowing that you really need to sleep, and getting absolutely none as a result. My mum had a similar problem, she informed me in the morning. Lucy had the same problem too, but she can just sleep all the time and do nothing because she’s a dog. She poos constantly in the house, is a threat to my entire being and robs me of my sleep, but I still love her. For now.

Having had an extra week off for two cycles in a row, I actually was a bit nervous about treatment today. Not nervous meaning I was actually worried about the treatment, nervous because I felt like I was forgetting how to do the treatment. It’s stupid really. All I do is show up, sit down, get stabbed in the chest, then try and not feel too awful until I’m allowed to leave. There’s nothing to it really. I feel nervous about the needle going into my chest again, how shit I’ll feel during bag 2, and that the nurses won’t give me compliments about my cake. Well, the needle in my chest was fine, bag 2 was shit but it’s always shit and the nurses COULDN’T STOP TELLING ME THAT MY CAKE WAS AMAZING. Boom. Two out of Three ain’t bad. Take that nerves, you irrational, irritating irritators. I hate you bag 2, you are good for absolutely nothing (other than potentially saving my life and killing cancer).

The way that bag 2 makes me feel has actually evolved. I seem to be slightly better at handling it based on the amount of nausea I get now (or don’t get) during its delivery. That negative aspect of it has definitely declined in the past 2 sessions. It used to be crippling and I would have to sit with my eyes closed and head between my legs. I’d have a steady flow of nurses approaching me and asking me if I’m Ok, telling me to have the injection. “I’m fine thanks, I don’t need the injection,” I’d say, eyes still closed, head still framed by my knees. “Daniel…” they would start, indicating that I was in trouble, “just have the injection. It’ll make you feel better. You only have to stay an extra hour in the hospital. We aren’t that bad are we?”. This is what happens when an immovable object meets an unstoppable force. “I’m good, it’ll go in an hour or so,” I’d say, trying to sound as confident as possible, knowing I was mostly lying through my teeth and not moving my head from its brace position.

Nowadays, though, bag 2 just makes me sweat a lot, gives me a runny nose and leaves an awful metallic taste in my mouth during treatment. The nurse told me that the metallic taste is actually from bag 1, but it only ever comes on during bag 2 so I refuse to believe it. Bag 2 is responsible for all of the evil in the world, bag 1 is just an innocent bystander.

During bag 2, I overheard another patient asking if they could have some anti-sickness tablets. She had told the nurses that she didn’t need any more at the start of her treatment because she had a large stash at home; anyone who has been diagnosed with cancer will know that you build up your own little pharmacy over the course of treatment, so you start to decline the drugs after a while. The trouble was, her treatment had made her feel sick straight away, something which didn’t usually happen, she said. I learned all of this by being nosy and eavesdropping on their conversation.

The nurse told her that she would need to get the pharmacy to prescribe them and that there was a big wait – approximately 3 hours. Hearing this, and knowing that I had been given a new box of anti-sickness just 20 minutes before, I interjected. “I’ve got loads of anti-sickness if you need some,” before turning to the nurse, “I assume everyone gets prescribed the same pills for it, right?” The nurse said yes, then quickly walked away whilst saying “I’m not allowed to witness this happening!” She turned and winked at me, indicating that she wasn’t too mad about the situation. I gave the woman a strip of pills and she wished me well with my treatment. Hopefully, I purchased myself some good karma, although my intentions were completely selfless, of course.

Today contained another sobering moment too. You get used to these when you regularly spend time in a hospital, especially one specialising in cancer. I’ve mentioned before seeing a young boy with leukemia sitting in the M&S cafe with his dad, and another one where I witnessed a woman ringing a bell indicating she was cancer-free. These two examples demonstrate the different ends of the scale of experience – from negative to positive. Today, it was towards the negative end of the scale.

A man who was sitting next to me was just starting treatment for the first time. From what I could gather, his diagnosis was bleak and the treatment was palliative. He didn’t seem very old at all, I’d guess about late 30s, early 40s. I heard him say various things, about how his mum is struggling to deal with his diagnosis and how he doesn’t have anyone to look after him at home. He sat with his eyes closed as the drugs pumped around his body. I wish I could write about how I said some inspiring words to him, or simply offered him my best wishes. None of it felt appropriate. Everything was too personal and I felt bad for even overhearing the things I did.

It served as yet another reminder of all the things I have to be grateful for. My treatment is still aiming to cure, it isn’t looking to make my time ‘more comfortable’. I also have an amazing set of family and friends around me, as well as my fiancee. There’s so much to be thankful for in my situation; I try my best to always remind myself of that. These situations make you realise it more than ever.

The rest of the treatment actually went Ok. All of the nurses were lovely as ever and made the whole experience infinitely better than it should be. After about 4.5 hours of being hooked up to the pump, I was packing my things up and leaving with the baby bottle (of chemotherapy) attached to my port. My mum wasn’t going to arrive for about 20 minutes so I found a table in the waiting area and watched patiently out of the window at the drop off point.

As I waited for my mum to pick me up, I saw the man who had been next to me in the chemotherapy ward walk outside and light up a cigarette. He was pacing, staring at the ground. I just sat watching him and wondering what was going through his head. I wondered how he could smoke after chemotherapy – he had seemed quite distressed on the ward, I guess that emotion making him want a cigarette was more powerful than the sickness of the drugs. Maybe the cigarette even relieved some of that tension for him. It was hard to blame him, especially if he’s addicted. His body was probably crying out for something normal, maybe even something destructive.

The novel I’m currently reading, Don’t Point That Thing At Me, reminded me of the mock-Latin phrase ‘Illegitimi non carborundum’, often translated as ‘Don’t let the bastards grind you down’, despite not actually meaning this in Latin. The source of the Latin-English pun has been attributed to the British army in World War 2, and I’ve always loved it for its very British-style humour. It manages to perfectly symbolise both hope and cynicism at the same time somehow. I like to think of it when things feel hard. As I watched this man pacing and smoking his cigarette, I said it to myself in my mind. I wished there was a way I could communicate it to him which would adequately get across the good sentiment, but there wasn’t. He’s been in my thoughts for the rest of the day.

Unfortunately, my state descended a bit as the day wore on. Although the treatment went well on the chemotherapy ward, it started to deteriorate in the waiting room. I got diarrhea and started feeling really nauseous. Sitting in a tiny public bathroom in the hospital, I was starting to feel horrible. The car ride home was a struggle. Every sharp turn, speedbump and roundabout made me want to throw up. My puppy Lucy was on my lap and her body felt hot, which made me feel extremely uncomfortable. I’ve spoken on here about how I’ve always had a weird phobia of feeling too warm. Sitting and sweating is my idea of hell, and it is emphasised by other things being hot. Sometimes I even hate it when people touch me if they feel too warm because it makes me feel weird. There’s a strange thing I have where in certain moods I want my food to cool down before I eat it too, not because it’ll burn my mouth but because it makes me feel uncomfortable. I don’t know what it is, and I attribute some of my obsession with exercise to it. Keeping myself very fit means my resting HR is lower and I sweat less; that’s how I feel anyway, I don’t know how valid it is in reality. Lucy’s hot body laying on my lap was making me feel worse, but I persevered. She’s too cute to disturb.

I got home at about 14:30 and got straight in bed, which is where I remain now. I’ve been in and out of sleep all day. Things still feel positive. I’ve had much worse first days in a treatment cycle, but I’m back to walking the hard miles. Having that extra week in the last two cycles has been a blessing and a curse, really. It’s great to have that third week off, feeling better than ever and enjoying life more than I’ve been able to in a long time. The mentality shift when you are back at treatment is tough, though. It feels like the time off makes you less prepared to deal with the realities of the current situation. I fight on, though. Cycle 9 has begun and I only have 3 more to do before the next scan. After that, I finally find out if I can have the surgery. If I can, it will probably be followed by a day of pure euphoria, followed by the realisation that I am going to be having a major operation and all the dread and anxiety that brings. If I can’t, it’ll be adjusting to the next thing that the oncology team throw at me and trying to stay positive about things.

Illegitimi non carborundum

A Newcomer to Writing

The ‘C’ Word

As I’ve said a few times, writing is a new thing for me. Although that is true, it’s also a bit of a lie. Maybe ‘lie’ is a touch strong… ‘inaccurate’ is probably a better reflection of the reality of the situation. I have written a lot in my life, but I am new to writing for fun. I’m also very new to writing fiction. It isn’t something I had tried before I started the blog, but in recent months I have started to dabble in it as more of a pastime. I need to go back to my school days to discuss my history with writing properly.

In school, I always seemed to do well in English, despite putting in little to no effort at all. My immature philosophy throughout school and into my first year of university was that you are either good at something or you aren’t. The idea that you could practice, commit time and get better at something, didn’t register with me. I thought that was just talk to motivate people who were bad at things, in an attempt to make them feel less bad. When I saw professional athletes, I assumed that they had put in very little effort to get to that level of skill. “They’re just good at it,” I thought to myself, whilst acknowledging that it wasn’t the thing I was good at. It doesn’t mean I thought they were lazy and didn’t have to work for it, but that they always knew they were good at it and were always bound to be if they backed it up with some effort. It was easy to put effort into something you were good at; I knew that from playing the guitar, something I considered myself naturally good at.

This ‘master of none’ mentality did very little for me, and likely robbed me of a lot of valuable experience early on in life. Looking back, I wish I’d played football more, for example. The few times I tried and wasn’t very good at it told me that it wasn’t for me and I was bad at it. I hadn’t seen the time and commitment everyone else had put into getting to their proficiency, so I just saw it as a natural talent that I didn’t possess. That stopped me from trying at it, and I never really put any time into it. Nowadays, I wish I played it more because it seems like a good hobby to have, but I’m not overly fussed. Not enough to actually get out and learn it, anyway.

I bumbled through school and sixth form, never realising how lucky I was to be an A*-C student without really trying at all. There was something more in English, though, and I knew I liked writing the essays for some reason. When it came to selecting university courses, it was a no brainer for me. English was where my skill lay, English was what I’d do. My predefined personality, characteristics and attributes assigned my fate to English, so I walked that path with very little critical thought or second-guessing. The same philosophy applied to the idea of going to university – that was just what everyone had to do if they wanted to get a job, I thought. Everything is predetermined; what is the point in fighting it. It’s a very anti-entrepreneurial approach to life, but it’s easy.

I went to university and studied English. My love for writing essays continued, really. Throughout school and university, writing essays was my favourite part. When I did my MSc in Management at Bath University, the story was similar; my favourite part was writing essays. When I had to write a 15,000-word dissertation, I couldn’t wait to get stuck in. I finished it with months to spare and got a mark of 76% in it, which is a really good grade for such a large, convoluted piece of work. Despite these signs that maybe writing was something I should try and indulge in more in my spare time, I didn’t. I never really thought that I was naturally good at English because I enjoyed writing, and that was also what helped me in all of the other subjects where exams were largely essay-style questions.

Eventually, I realised that I had actually spent a lot of time writing essays and that it must be at least partially responsible for my level of proficiency. My time at Bath studying for my master’s also showed me that by committing some time to a new subject, I could do well at it too. It was a bit of a breakthrough for me personally.

The mentality didn’t change overnight, and I can’t put my finger on the main catalysts responsible for it changing, but it really has changed. I don’t ascribe it all to the fact that I studied business for a year instead of English; there were lots of things going on in this period. I was maturing and learning more about the world – it was harder to view things through such a simple lens. I remember reading the book Outliers by Malcolm Gladwell and now think that was a bit of a turning point. He essentially breaks down a list of extremely successful people and discusses how they benefited from not only dedication and skill but also a level of luck and circumstance. It was the first time I’d seen someone paint a bigger picture of success, properly analysing some of the external factors which can play into someone becoming more proficient and successful in a key area.

It is incredibly empowering to believe that you can do anything if you put your mind to it. I don’t mean that in the cliche way that teachers or parents would use it. I simply mean that you can ‘do’ something, persevere through the tough stages, and build upon the foundation to a level of proficiency that is better than you would have started at. Early on is usually where you see the biggest improvement in a skill if you stick with it, in fact, so this stage is where you usually see the biggest and most noticeable changes. That was how I felt with guitar anyway. The first few years you improve a lot, but then you hit a bit of a ceiling where it takes a lot more time and effort, to achieve much smaller improvements in the margin of skill. It’s a fulfilling thing, but it takes a while to ingrain in your mind and behaviours. There are days when it feels like a chore, where you question whether you should be bothering and where the overwhelming emotion towards it is that you want to give up.

I’ve quipped to friends that I find the writing I do for the blog to be quite ‘cheap’ and ‘easy’. I think this is true, but it may sound more negative than I mean it to be. It isn’t that I’m not proud of the writing on the blog or that I think it is bad per se. It doesn’t really include any ‘characters’ or plotlines, though, making it easy to write. All I have to do is sit down for an hour or two and throw together some thoughts. Sometimes it takes a little longer to write, but generally, it is low-stress, easy writing. It makes it very enjoyable most of the time. It’s sort of like a therapy session; it feels like you have a captive audience simply wanting to hear your thoughts and how things are going for you, or this is how I approach it anyway. It is maybe arrogant to claim to have any audience at all, let alone a ‘captive’ one, but you know what I mean.

Having said this, I had a down period with the blog recently. I had quite a few drafts on the go but didn’t feel I was getting any of them in a place where I was happy to post them. This made me avoid writing because I didn’t know how to progress the pieces I was working on, and I struggled to feel inspired to write anything else with so many drafts in progress. They also contained a lot of ideas that I was really happy with. It seemed a shame to just delete them, but I couldn’t find a way to make them work in a way that I was happy with them. Overall, though, the blog posts are really enjoyable to write, and it is a welcome distraction from everything going on (not mentioning the ‘C’ word).

I’m still learning to enjoy fiction writing. It isn’t that I don’t enjoy any of the time I spend writing it or don’t want to spend time doing it. The difficulty comes in piecing together the narrative, figuring out the best way to portray things, writing the scenes, developing the characters etc. They’re all things that I haven’t tried to do before, and it comes with many frustrations. The whole process really plays into the hands of the critical part of my brain. I’ve always been quite self-critical, and I think I try and hold myself to a high standard. Sometimes you need to just press on for the sake of progress, though, and this is the part I am slowly learning. Instead of fretting over every word, sentence, or paragraph, sometimes you need to just write a thousand words and not care about it until later. That way, you establish a framework to operate in.

My new approach is to write out a plan on pen and paper about who my characters are, the main scenes I want to write and how they fall in the plot’s timeline. It has helped me fight through some of the more frustrating parts of writing, but I have not had a significant breakthrough with the technique. It hasn’t transformed my writing process yet, that’s for sure. I still haven’t finished a single short story that I have started, and the novel has not been progressed for a while. It is all a process that I am learning more about. I already had a lot of respect for authors, but it does give me a newfound respect. When you read a novel and everything perfectly fits together, you don’t think about how that person has built this world from nothing. They’ve agonisingly formed these characters that appear as natural as if they walk and talk in front of you when done well. You seldom see a sentence produced by a character in a book that looks out of place. That is a difficult thing to do.

I sense that my current situation in life (not mentioning the ‘C’ word) provides me with an ‘outlier’ moment. Writing is becoming an important part of my life, and I wonder if there is any way I can make some sort of career out of it. I’m not sure what that would look like, whether it would mean writing novels or doing some form of writing for more corporate purposes, such as copywriting, but I’m hoping I can do something with it. If nothing else, I hope it sticks as a hobby. Yesterday, I found out that my Dear Cancer letter had been accepted by the magazine. It will be in the June edition of the magazine. That will be the second thing I have had published in a magazine, the first being my 206-word story Hunter-Gatherer. These small successes give me hope that I may be able to turn it into something more significant than a hobby, but we’ll see.

Dear Cancer

This was written for a competition I saw on Twitter. The brief was simply to write a letter to cancer. I thought I’d do it as it sounded like an exciting concept and a fresh take on a subject that I have obviously tackled to death in this blog. Writing in a letter format was a bit of a struggle for me, and it felt pretty jarring with my natural writing style. I also wasn’t sure how to address the ‘cancer’ as a subject and struggled with the best way to approach this. That also made it a nice challenge, though. I’m reasonably happy with the end result, I think. It was nice to just try something new. I’ve also been looking for inspiration in my writing, and these sorts of competitions add a pinch of excitement. Upon entering, I didn’t see any conditions that mean I cannot share it on my own blog, so hopefully, it isn’t a problem. I can always delete the post if I need to and claim ignorance.

Dear cancer,

In November 2021, I was diagnosed with you after five weeks of hospital appointments, scans, and blood tests. I was 28 years old. I’m 29 now and eight cycles into chemotherapy, with four more to go before the next progress scan.

I’ve learnt to facetiously refer to you as ‘The ‘C-Word’ because of how people react to your presence. Some people tune out as I talk about you, probably choosing an ‘ignorance is bliss’ approach to the topic and assuming it’ll never happen to them. Others can’t bear to face the reality of it. “You’re young; you’ll survive.” It can almost feel callous when people say words to that effect, but I know that isn’t their intent. The fact is that you are scary. You’re the diagnosis that no one wants to hear, the one that everyone fears – the great equaliser. Every time I see a headline that a celebrity has died at an unusually low age, I reluctantly scan the article. Your name is commonly there. Sometimes the word ‘pancreatic’ proceeds, and my stomach sinks even more.

Many people, medical professionals mainly, express how unlucky I am to be dealing with pancreatic cancer at my age. Statistically, I am very unfortunate. I have heard several figures quoted as the average age of someone diagnosed with my ailment, all of them over 70. I’m a touch younger than that.

The week after I was diagnosed, I purchased a lottery ticket. I’m not a superstitious person usually, but I couldn’t help myself. I was confident I’d win something. How could I get pancreatic cancer at 28 and NOT win a simple lottery? It was easy compared to what I’d managed to achieve with you. The day came; I checked the Lottery app to see if I had won. Not one number. You have my number, though, and I’m left dealing with the consequences.

At first, that consisted of much existentialism. Immediately after my diagnosis, I spent three days in the hospital. Sitting in the bed as I waited for a procedure that afternoon, I thought about how long I’d be alive before I finally succumbed to you. Maybe three years. Maybe one. Perhaps I’d be cured; no, that last one couldn’t possibly happen. It’s undoubtedly a matter of time now. Better face the reality of the situation than delude myself with hope, a dangerous thing.

The ‘doom’ phase lasted a few weeks, sparked by the leaflets, and fuelled by some pessimistic doctors. “In a small number of cases, chemotherapy will reduce the size of the tumour,” I read in a leaflet titled ‘Pancreatic Cancer and Diet’; I thought this would be the least risky leaflet to read but even this contained harrowing information. The doctor had told me that I really needed chemotherapy to work if I was going to survive. I’m currently classed as inoperable because the tumour has spread to a major artery. I not only need chemotherapy to shrink my tumour but also to shrink it away from the artery, something which is down to potluck, apparently. Without the artery being healthy, I can’t have the operation. Without the operation, I can’t get rid of the cancer. Upon reading the sentence, I sat crying in my hospital gown and wishing I could just opt out of the whole thing and die. At the lowest stage, I thought about a train crossing I used to cycle over where the locomotives came flying through at speeds of up to 180kmph. That’s where I’d do it.

I’m happy to say that you’ve given me far more to be grateful for over time than to loathe you for. Reading has always been a big hobby, and I’ve always wanted to try writing, but I didn’t think I had anything interesting to say. After starting chemotherapy, I created my blog called Ebb and Flow. It doesn’t get a massive amount of views, but it is far more than I thought it would get when I started it. People comment on the quality of the writing, which makes me feel more accomplished than anything I’ve achieved in my job as an IT consultant. I participated in the Run 40 in Feb campaign for Pancreatic Cancer UK, raising over £7,000 for them; my campaign was in the top 1% of fundraisers on Just Giving in February. I’ve also asked my girlfriend to marry me and have spent more time with my parents than I ever thought I would again; I had to move back in with them as I couldn’t afford to live in London anymore whilst undergoing treatment. Every cloud has a silver lining, and I’ve found my fair share of silver linings over time.

None of these achievements mean as much as this final one, though… I’ve proven that I can fight you, cancer. I remember seeing the adverts for Cancer Research UK before I was diagnosed and having so much admiration for those fighting against you. “I could never do that,” I said to myself. I really believed it – I couldn’t even have a blood test without feeling like I would pass out. At the three month scan, I found out that the chemotherapy was proving effective and that we had almost halved you. The tissue around the artery is looking healthier, too. There’s still a long way to go before I can say that I am cured. The surgeons need to approve the surgery, which may take other methods such as Radiotherapy and Nanoknife to achieve. Then I need that surgery to be successful. After that, I go into the stressful stage of remission, constantly fearing that at the next progress scan, I find out you have come back with a vengeance, lurking like a shadow, dormant until detected.

It’s a long road, but it’s the only way out of the woods. I’m tackling it with my head held high, surrounded by loved ones and holding onto whatever hope I can. The worst that can happen is you win, and I die, but at least I’ll know I gave it a good go and found plenty of happiness doing so.

Ebb and Flow; A Critique of Social Media

I’ve written before about the pros and cons of social media. A while ago, approximately 6 years ago now, I deleted all of my social accounts. I only really used Facebook anyway and never had a Twitter or Instagram account. It was a very liberating process for me. I was never too into these platforms, so I didn’t find it too difficult to split with them. The anxieties mainly came from wondering whether I would have kept the social connections I had alive without it and whether I’d miss the random photos I was tagged in, the events that people plan etc. None of these concerns really materialised in the end. My relationships needed to mean more to me than indifferently scrolling through a newsfeed, getting updates on people’s lives that I mostly knew via tenuous links and convincing myself that the relationship was somehow meaningful. In reality, I decided that I needed to nurture the relationships that mattered and allow the others to drop off. I slowly realised that part of the con of social media is this idea that you constantly need to be involved in everyone’s lives all of the time. You don’t. I seldom speak to some of my best friends, and all that means is that when we do speak, we have a lot to talk about. We don’t need to constantly message or update a status to keep our relationship strong and meaningful.

However, with a desire for this blog to reach as many people as possible, I created a Twitter account. This was new ground for me. I’m not sure why the idea of Twitter appealed to me more than the other platforms; I just knew that I couldn’t be bothered to manage multiple social accounts. It’s hard enough for me to want to log in to one and post regularly, something which I most definitely do not do. Each time I write a blog post, I write a blurb on WordPress, and it is automatically posted on Twitter; I rarely post anything outside of this process. I try and check it each time I open up my laptop, though, to respond to any comments and look at my feed a bit. I follow a few people there, and I like to see how they are doing. Most of them are involved in pancreatic cancer in some capacity.

The draw to particular accounts on Twitter may be for a variety of reasons. Sometimes it is because someone has survived cancer, sometimes it is someone who has been fighting cancer for a while and so have good knowledge to share in their posts, sometimes it is a researcher posting about cancer. I do follow some accounts for other purposes, such as Artfinder, a website where you can buy art from individual artists, which I absolutely love; still, the account is primarily to engage with an audience about cancer, so I mostly keep it to this purpose.

This is where the pros and cons of social media come back into the frame. A year ago, I would have debated all day and night that social media only has cons; I still mostly have this opinion, if I’m honest. There are so many things about social media that I find terrible. One social media platform (of sorts) I have never managed to delete is Youtube. It is a bottomless source of entertainment, mostly mindless. I watch some educational stuff on there, too, such as The B1M channel, which produces fascinating videos on engineering challenges and successes around the globe. 95% of what I watch on there, though, I could stop watching today, and all it would do is grant me back time to commit to more productive hobbies I have such as reading, cooking or, basically, anything else. Sometimes it is valuable to just sit down and watch something mindless. I spend approximately 2 hours on Youtube a day, though, a lot of this time in lieu of watching actual TV. I’d like to bring it down a bit, at least on days when I’m not feeling devoid of energy from the chemotherapy.

A significant con is the commentary that you see on social media, in my humble opinion. There is something about being a faceless individual armed with a keyboard that seems to turn people into psychopaths, incapable of being reasonable and of displaying empathy. Similar to the effect that driving has on people – clutching a steering wheel also manages to turn reasonable people into ego-maniacs who can do no wrong, blaming the external world for every fault. I don’t believe that this many people exist in the world who scan the internet, leaving inflammatory comments on even the most innocent of videos. People will get angry and disagree over anything on the internet, and the level they then sink to belittle and shock each other is unfounded in any other area of human communication or, even, life. If you spend 5 minutes in the comment section of almost any video on Youtube, you are likely to encounter at least one comment or reply that is so horrifically racist, homophobic, hateful or a combination of all of these things, that it genuinely shocks you. They are only a few examples of the specific type of hate to be had on these platforms, too. It comes in all sorts of forms, against virtually anyone who dares post on any of these platforms, never mind just Youtube.

The thing that got me thinking about the pros and cons of social media on Saturday, though, was far more innocent than all of these things. It was a woman in her mid-40s who has been fighting pancreatic cancer since 2020 posting on Twitter. She posted a series of tweets detailing the timeline of her diagnosis. In summary, she was diagnosed in early 2020, was in remission a year later after a successful Whipple procedure, then a few months ago was diagnosed as stage 4, the cancer not only coming back, but spreading out of control. Her prognosis is not good as far as I can tell, and it seems that she has been given about 12 months to live. This is where things get complex for me personally with social media.

I’ve chosen to follow this woman, firstly. I knew her prognosis from her previous tweets, but I did not realise that she was actually in remission at some point and that this was until quite recently. It is heartbreaking to read. I always tell people who say that they can’t imagine how they would cope in my situation that it is impossible to know unless it happens to you. I’m going to be one of those people and say that I can’t imagine how it must feel to be in this person’s shoes, but it has forced me to really think about it over the past few days. Unfortunately, her story can easily become my story, and I may have to face that grim reality. The story highlighted that I may have to face it sooner than I even realised. It sounds like her remission lasted at most a year, if not less. That is a scary thing to consider.

I’ve felt so good recently that I really have managed to mostly shrug off the cancer. C’est La Vie; it’s so easy to say when things are going your way. I’m developing a thick skin developing and I am used to attending the hospital appointments, speaking about the cancer and dealing with the uncomfortable aspects of chemotherapy. I’ve always been someone who takes steps to adapt to whatever environment I’m in, so I think I’ve taken fairly well to the cancer lifestyle so far. The reality sunk in fairly quickly and, if anything, I overreacted to it initially. That is useful for my mindset, though, as once I manage to drag myself back a bit, I recognise that there is actually more potential in the situation than I am giving credit. It’s a nice way round to do things I think, as opposed to being numb to the news upon first hearing it, then spending weeks slowly unwinding the reality and dealing with the emotional burden that would place on me. Besides, I’ve always dealt with things this way, so I’m bound to think it is a better strategy.

The downside of growing accustomed to the situation is that you can be knocked harder by things that mess with your perception of it. There have been many things making life feel normal again. I ran just under 30 miles last week, and the times are getting better. My last chemotherapy cycle had a tough first 4 days, but then it’s been fine. I’ve felt more energised than I have in a long time and I’ve been doing a lot. Walking the dogs, cooking, engaging in getting back to work and looking into any potential financial benefits that the government provide which may help someone in my situation. I feel motivated to do things, it’s refreshing. But that has meant that I’ve felt more ‘normal’ than ever.

Finding out that my platelets were low was the first kink in the armour. I don’t mind missing treatment for another week necessarily; it’s actually a good thing for me, really. More energy, more running, more feeling good. But it is still delaying the inevitable, and it makes me worried that if my platelets can be low in the cycle I consider the best one I’ve had so far, how can I be sure this isn’t now going to be a staple of my treatment? Every 2 weeks I fail the platelets test and have to be held back another week. My treatment drags out longer, I have to wait longer to get that all-important end of chemotherapy scan and I struggle for even longer to understand what the future holds for me. It’s bleak and frustrating, but there’s nothing to be done about it.

Reading these tweets, though, provided a blow that goes far beyond revealing a kink. It reminded me that there is an entirely different part of this journey, far beyond the chemotherapy stage. That journey is stacked with challenges, most of them completely out of my control. People go into remission, only to be brought back down to earth again by another, sometimes worse diagnosis. Whether it comes within 6 months, a year or 3 years later. Sometimes that diagnosis is so devastating that there isn’t anything else to be done. Even thinking about this is speculative in my situation as I haven’t even managed to get the operation yet; I haven’t even had it confirmed that I will get the operation yet. To get to that stage, I may have to enter a completely different treatment stage involving radiotherapy, nano-knife, or both. That is part of the reality which triggered in my mind as I considered her story.

What feels worst about the whole situation is how it strikes hope in me that I don’t end up in that position. It feels amoral given that the whole episode was triggered by someone sharing intricate details of their story. The fact that someone is dealing with that reality, and I am hoping that I never have to join them in it, is itself a bleak reflection of human psychology. Of course, it would be far more strange if I hoped to also be diagnosed as terminal as a form of atonement for feeling this way, especially when this is a person I do not know personally. The way that my mind immediately went to my own situation, though, makes me feel selfish, and like I am lacking the correct type of empathy in the situation. I hope the best for her and her family. She has mentioned having a young daughter and a husband. As I said earlier, it really is impossible for me to imagine what it must feel like, but I’ve spent a long time thinking about it since I read her words. I’m taken aback by her groundedness and humility, both traits which seem to come naturally to many of the people I have met who have been dealt a tough hand by cancer.

So, I feel both grateful and resentful of social media again. On one hand, it allows incredible people to share their stories and give others some perspective on life. This is a huge pro. I’ve met many people through the blog and Twitter, some of which have become good friends in real life too. But the cons are that the algorithm starts to know you, and starts to push things your way that it knows are more likely to gain your interest. For me, because most of what I share, like and engage with is about cancer, this is the key focus of my newsfeed. It provides a rich mix of both positive and negative perspectives on cancer, and some days I go on there and find plenty to smile about, whereas other days it can be a harbinger of the grim realities of cancer. That helps keep me grounded and humble too, though.

It reassures me that I am making the right decision by only signing up to Twitter with the blog, and shunning Facebook et al. The whole metaverse thing scares me anyway. I’m pretty sure Mark Zuckerberg is an alien sent to earth to examine our species and send the details back to whatever super-race he comes from, so they can learn how to better indoctrinate us. I’m suspicious of him and Elon Musk. For some reason, I’m less suspicious of Bill Gates. Maybe he just invests more in his PR budget, and I’m getting swept into the brand. He seems genuine in his want to contribute to the betterment of society; Mark Zuckerberg seems to want to contribute to the betterment of himself regardless of what effect it has on society. Every time I see an article stating that Facebook’s usership is dropping, I feel giddy and I chuckle to myself. Hopefully, Twitter will appreciate my dedication to them alone and give me a little blue tick, implying the blog is much bigger than it is. Maybe then I’ll be invited into the inner-circle of the elite and find out more about this super-race they’re working for. But maybe that would be on terms that I must never be cured of cancer to keep my role in the group relevant…hmm, is that a price worth paying? At least I’m not thinking about those Tweets anymore…