Completing Chemotherapy…

The Chemotherapy Diaries

Taking a Sip From the Chemo Cup

It is good to have a project. Better when that project is something of your choosing, but a project is a project. This blog started off as a project and it has taken some significant steps to get it going. They weren’t significant meaning it was a very tough and arduous process, but I was trying to learn about buying a URL, hosting the blog, designing it etc when I was at my most ill. It added a layer of complexity. There was the usual lull period at the beginning where I was trying to establish how the different aspects worked. I’d read about starting a blog here and there, but was relying on getting some time with my friend who had started a blog for his design work. Eventually, one night when I was sitting awake, unable to sleep, I acknowledged that I was using this as an excuse for not learning myself. There’s little point relying on other people for knowledge that you know would benefit you if you just pulled your socks up and learnt it. Getting them to impart some of their valuable knowledge onto you can be a great thing to do, but if not being able to get their time becomes your excuse for not progressing YOUR project, you’re perhaps not being honest with yourself about what the problem really is. I know that is what was happening to me anyway. So that night I dived into domains, purchased one, purchased an email account to run the blog from, started messing around with themes and the design tool, and a few hours later I had the outlines of a blog (and no sleep for another night). A few days later, I wrote the first Road to Recovery piece and launched the blog page. I then added some of the poems I had been writing in the hospital and voila, all of a sudden I had a blog. It was real and it felt great.

Boring Lucy With My Blog Posts

Chemotherapy was an involuntary project which was every bit voluntary, but it is involuntary if you want a chance at survival. Your body has been fighting it for as long as it has existed in some way, you just haven’t been aware of it. I was forcing my poor body to train for and run ultra-marathons. It must have been sick to death of me by the time I was diagnosed; it was very much making it known by the time I finally went to the hospital, when my weight was dropping like a stock price and I couldn’t make it through a meal without excruciating abdominal pain.

During my meeting with my oncologist on Thursday, he had to reprint the form where I accepted all of the terms and conditions of treatment, and signed to agree to it. I had signed it during my first visit to The Christie but they must have sold it on eBay for an undisclosed amount of money – ‘Official Ebb & Flow Chemotherapy Form – Signed Original’. Someone probably Googled the blog and spent 50p on it, and is now praying I die and get some sort of notoriety posthumously for my cancer blog. For the record, none of this actually happened. The original had not been put into their system. There was a split second where I humoured the thought of threatening to sue them like we’re in the United States of America, but then I remembered that the care is all basically free and incredible. Reluctantly, I decided not to bite the hand that feeds. In all honesty, I’m just angry that I had to embarrass myself by showing another person my signature. It is not intelligible in the slightest and I should be far more embarrassed about it. They probably binned the first one thinking that someone had tested out whether the pen had ink in it by scribbling in the signature box.

It had been a nice few days running up to the final chemotherapy session. Anna came back from London on Friday, my best friend Luke and my amazing brother Greg have birthday’s this weekend, and there have been lots of people around to hang out with. Then the final chemotherapy session was yesterday, Saturday 14th of May! Well, the last for a while at least. I have the scan on Tuesday but won’t receive the results for two weeks. That means that there is a good window of opportunity to enjoy myself a bit and not focus on what they may say. Worrying about it won’t change them, just like hoping they are good won’t change what they are. At least it will identify what needs to happen next no matter what.

Let’s focus on some of the positives. I raised over £7,000 for Pancreatic Cancer UK, I have written a few posts for Pancreatic Cancer Action’s website, a good amount of running was done given I was on chemotherapy, no major delays in the chemotherapy cycle (although a few small ones), I had my writing published twice, and learned that my tumour had shrunk by about one third at the midway scan! I also baked the nurses 11 different cakes in total. I hate to admit it but I didn’t take one for the first session; it was before I started baking often and I was too scared to think about anything other than making it to the hospital and getting through whatever this chemotherapy thing threw at me. The start was rocky…

As I sat on the bathroom floor in the shower on the morning of the first session, I started to cry, anticipating what the chemotherapy was going to consist of. The oncology team had warned me that they would expect someone to be in bed about half of the time due to exhaustion. That’s twelve hours a day. It sounded like a lot and was worrying me. To make it worse, Google didn’t give me a lot of hope that the chemotherapy would do what I needed it to. Neither did the Pancreatic Cancer booklets that were handed to me after the diagnosis in the hospital in London. As I’d sat there struggling to sleep in the hospital room, I had decided to indulge in the ‘Pancreatic Diet and Enzymes’ booklet. It sounded the least risky; I was quickly proven wrong. One of the first things I read as I opened up the booklet was ‘In a small number of cases, the chemotherapy will successfully shrink the tumour.’ Well, that wasn’t what I wanted to read at that moment. It was never going to start well after that.

The first session was tough, there’s no doubt about that. It is also the one where you get an induction from the nurse and she tells you every detail of the chemotherapy; what it is likely to do to you, how bad it is for your body, all of the foods that you need to avoid, things to look out for that are definite emergencies, other things that are likely to be emergencies and finally, how some of the negative side-effects may last forever. The last point is referring to where you suffer from nerve-ending damage. When this does happen, the feeling in that part of your body rarely comes back. It has happened in my toes. If you touch the very end of them, I can only feel a weird sensation. The chemotherapy has also affected my taste and I struggle to fully taste food at the minute. I’m hoping that one subsides, pronto. What is the point in baking delicious cakes if you cannot even taste them? Oh right, it’s because your dad is addicted to cake and needs at least 5 slices before breakfast to ease himself into the day. If only I was exaggerating. For me, though, it isn’t worth the calories in the butter alone, and the five Creon tablets I have to take to break down the single slither of cake just put me off even more. I’m kidding, it totally is; that would be a damning review of my own baking to claim that it wasn’t worth the calories.

I heard the nurse inducting a man yesterday. He was sitting on the chair next to me so I heard every word – more eavesdropping at the hospital, I know. I really need to get a life, or watch more daytime TV if I’m this interested in other people’s lives. At least on TV programmes, people are choosing to put their personal lives out into the world voluntarily. When Anna and I were staying in Whitby, there was a book on the Kardashians on the shelf. I started reading it to see what this book could possibly be about but I got hooked pretty quickly. Their descendants were poor Armenians. The book covered these ancestors and how they moved to the west coast of America due to a prophecy foretold by a local man who claimed to see the future. A number of the village left within the next decade, and the remaining ones thought they were crazy believing this man. There was then some form of invasion from a neighbouring country, and the remaining people of their village in Armenia were killed in the attack. Not only had they avoided death, but they had moved to an area in America which was about to experience a boom. The building of dams in California meant that the area could be inhabited much easier. They made their lives there when it was tough (and cheap), but were there to reap the benefits as it became more and more popular, with Hollywood becoming the new epicentre for film. They started various businesses, which were extremely successful, and that is how her family started to accumulate wealth. One of them was a garbage collection business – I believe this was the first which was very lucrative, but I can’t remember exactly. SEE – I told you it was interesting! They know how to get you those Kardashians. I’m sure they approved the book before its release. I stopped again and we went out walking before I spent the rest of the weekend speedrunning the book.

Anna and I In Whitby – Half Way Through Cycle 11

Anyway, I was listening to the induction that the nurse was giving to the new patient. It is very interesting listening to it again when you are at the end of your treatment. You have such a different perspective on it all. Julie, a family friend, says that “you wouldn’t take paracetamol if you read the little booklet that came in the packet.” She’s so right. In the US, where Big Pharma actually advertise a lot of drugs to try and increase their sales, they list all of the side effects very quickly and comically at the end of the advert, usually with some montage in the background. It is like satire from a British show mocking advertising. The whole thing is very unusual when you are used to UK adverts.

An Example of an American Dug Commercial

As I sat listening to the nurse discuss some of the more harrowing side-effects I’ve heard, I couldn’t help but smile to myself. I was finally at the end, and none of it got too bad. It felt good, even if it is horrible to think that this must have happened to someone to be listed.

It is hard to feel overly positive about making my way through the chemotherapy when I have just learnt of another story which is extremely sad involving the same treatment. An incredibly supportive follower of the blog sent me a direct message on Twitter a few days ago, telling me that a family member who was critically ill with pancreatic cancer had very sadly passed away after only four sessions of treatment. Although I do not know them personally, the message was very moving and I could feel their pain, even if I could never know just how awful it must be coping with that pain right now. The harsh reality of cancer sinks in quickly sometimes; even the treatment is harrowing and causes a great amount of stress on the body and mind. It alone is sometimes responsible for the downfall of the individual. It makes me less ready to celebrate any victory I’ve had against the chemotherapy as it seems disrespectful. You have to find a way to enjoy these moments, though, as they do represent a real victory in a struggle which takes it’s toll on you. When a cycle is going well, you feel on top of the world. It makes you forget how potent these drugs are and what they are designed to do to your body. The brutal reminders come when you get a new symptom, or an existing one seems to worsen. Fear, anxiety and foreboding quickly dominate your every thought. “What if the cancer has spread?”, “what if the chemotherapy is leaking into my body?”, “why have I started shitting blood, does that mean that things have gotten worse?”. The mind can be relentless; you can’t shut off your brain.

But here I am, I have completed the initial twelve sessions of chemotherapy. It does feel good. Since Friday, I have been experiencing a new type of pain in an area just above my belly button. I keep worrying about it, fearing that it may be a spread to the stomach. I know that the cancer tends to spread more to the organs around it in the digestive system, with the most common spread to the liver (I believe). The pain seemed to subside when I ate. It is a bit unusual, but I don’t think it actually represents much of a threat. If it continues, I’ll call the hotline and get some advice from them. Guess where I won’t be going again? To Leighton Hospital. No way… I’ll take the hour drive to The Christie, thank you. Once you find a hospital you trust and a team that have your best interests at heart, stick with them. That has been my experience so far. Whenever I have attempted to go to another hospital to save time, I have ended up frustrated and more worried.

The only other advice I can think of that is fairly new is in regard to mouth ulcers. It has been the killer symptom for me, getting so bad at one point that I stayed in bed for almost three days, struggling to talk or eat. The Difflam mouthwash provided by the hospital is good but mine stated on it to use a maximum of four times a day. Ignore that – it can be taken every 2 hours. I don’t use Bonjela as it doesn’t cling to the ulcers well. Iglu is much better. You need to dry the site of the ulcer using kitchen paper before you try to apply it. The gel goes hard and creates a layer over the ulcer, but it sticks much better when the area is dry. Once it is dried and you have applied the Iglu, fan it with your hand to make sure the gel hardens. It then provides a layer of protection which stops them getting irritated and also helps to heal them up. That method was by far the most effective. Then, stay away from any food with spice in it. I absolutely love spicey food so I would continually try to still make meals with similar levels of spice in them, but it isn’t worth it. Your tongue feels like it is on fire for at best 30 minutes after eating. Also, get SLS-free toothpaste. It tastes gross (mine tastes like anise, which reminds me of doing shots at university) but it makes such a huge difference. Normal toothpaste has a similar effect to chilli and can really irritate the ulcers.

Also, I know it is incredibly annoying always being told to stay hydrated, but it makes a huge difference when on chemotherapy. Forcing yourself to hydrate and get out of the house once a day is really important. I’d go easy on myself for the few days if I was feeling particularly tired, but there always has to come a point where you take the plunge and become more active in a cycle. The ones where I have been proactive about doing this have usually been my best cycles. Sleeping and lounging around is extremely beneficial in the right measures, but can be a double edged sword for both your mental and physical health if you allow yourself to become complacent and stop trying to get up. Even better, get a little sausage dog puppy that loves walking so you have a positive reason to leave the house most days. You won’t regret it. They love cuddles too.

Lucy Getting Close Enough to the Sea to Reap its Fruits (she wasn’t a fan)

So, I’m not sure what will become of the chemotherapy cycles posts from here out. I’ll do a final update next week to see how the chemotherapy is measuring out, then I’ll do another one in a few weeks to update on how well I am feeling the further away from a treatment day I get. Other than that, the next time I’m talking about chemotherapy may be in the context of mop up chemo. Perhaps it is too hopeful and optimistic to claim that, but why not have some hope under these circumstances. The oncologist seemed assured that the MDT will be reviewing it after the scan and handing over to the surgeons as they believe I am at a point where something can be done to progress this further… lets see what the next scan says and hope for the best.

I’ve thoroughly enjoyed writing this series and I think it is probably the most consistent one I have made. The Road to Diagnosis series was exciting as it was real and contained twists and turns, but that had all happened by the time I started the blog. The Road to Recovery is a slow burner for updates, but perhaps it will increase again now I am out of the chemotherapy bubble. For some reason, I always found this series the easiest to write for. I naturally found things around me to talk about, as if the series made me more cognizant of events taking place around me. I’d soak them in then think about how I’d write about them, and how they would compliment my overarching point within the post. It is nice when you find stories and poetry in the world around you – the ringing of a bell on the ward as someone celebrates beating their cancer, a man pacing outside the hospital and smoking after sitting next to me in the treatment ward looking incredibly ill, and the countless conversations with the nurses.

At the end of my twelth session, the nurse went to the kitchen and divided out the cake I baked them onto individual plastic plates. She then walked around the ward offering the remaining slices out to all of the patients. It was a really lovely moment, and I hadn’t seen them do it before. Various people receiving treatment were shouting over to me complimenting the cake. Some of them had tried other ones before as the nurses had offered them a slice when I had left. “Are you the guy that made the cappucinno cake?” one woman asked me. “Yeah, I was actually. How did you know that?” I responded, actually feeling quite charmed by it. “I’ve seen you with a cake every time you’ve been here at the same time as me. They’re really lovely. What a great idea!” It was so lovely of her to say. I then stood at my chair packing up my stuff and talking to her. She had an operation to remove her tumour a few months before, and was now on mop up chemo. The cancer had spread in her case, but it seemed as though they had controlled it, despite having a recent scare of it spreading to her bowel. I didn’t ask her what cancer she was originally diagnosed with – it feels too personal to ask straight out of the gate. She then asked about mine, and was surprised to hear that I was inoperable. “You seem like a fighter – that’s the most important part of fighting a cancer. Just keep going, that’s all you can do, love.” Her words echoed with me. I thanked her and wished her well with the end of her treatment, telling her that I hoped I wouldn’t see her around the hospital again, as she only had 2 weeks left on chemotherapy before she should be clear. She understood what I meant, but laughed at the (lack of) sentiment. “I’ll keep an eye out for you,” she said. I gave her a coy smile before thanking the nursing team who were looking after me that day.

A weight felt like it dropped from my shoulders as I made my way down the stairs to go and meet my mum and Anna. I’ve actually done it… I made it through all twelve sessions of the chemotherapy. Onto the next thing, no matter how scary it may be!

Taken November 10th 2021, the Day I Got Out of Hospital After Having a Stent Installed in my Bile Duct – My Skin Still a Jaundiced Yellow, But Closer to Normal Than the Previous Two Weeks

Waiting, Waiting…

The Road to Recovery

Mum and I Waiting to be Seen in the Oncology Office

Sometimes I wonder if purgatory is a real place. I sit and ponder over what it could be. Perhaps it’s a play area, but all of the slides are covered in hot tar that never cools down. Maybe it’s your favourite clothing store, but you don’t have any money to purchase anything, and it all looks perfect on you when you try it on. Or perhaps it is a corridor with pictures of everyone you’ve ever met hanging on the walls, but no actual humans to interact with; you spend all of your time trying to find the pictures of the ones you actually cared about, walking the endless hall and trying to remember where they’re located. My number one theory, though, is that it is a hospital waiting area where everyone seems to be seen before you. I think I may have gone there today.

The idea occurred to me today as I sat waiting at The Christie. My bloods appointment was set for 14:15, and my oncology appointment for 15:20. It is rare to have a face to face with your oncology team, and I wasn’t sure what this one was about. I knew it was probably a routine meeting, with my chemotherapy coming to an end. It didn’t stop me from pondering over it. A clinical trial that they want to put me forward for? Maybe my last blood test showed that my cancer has gone and the tumour markers are at 0 – the first case ever where the chemotherapy has completely killed the tumour. Maybe it’s spread… No, surely not. It’s probably just to tell me the potential next steps, which I think I already know. Do I know them? I probably misunderstood them but think I know them. Maybe I do need a meeting with the oncology team; it’s probably good that I’m meeting them then, I’m clearly confused.

I signed in at about 14:10. It wasn’t a receptionist I recognised. As I stated my name, date of birth and address (a standard protocol that you get used to), she looked panicked and asked me to slow down. “Can you tell that I don’t work the desk much?” She said as she frantically looked around the desk. It made me laugh and I told her not to worry. The other receptionist, the one I know well, reassured her and told her to calm down, then winked at me. I repeated the details at her request and she informed me that I was signed in. After thanking her, I awkwardly remained standing in front of her. “I’m so sorry, I’m not trying to test you, but could you also confirm if my treatment time is 9:30 on Saturday?” She rolled her eyes and smiled – “I’ll do my best.” Her best worked and she confirmed it was. I wanted to confirm as it is usually at 8:30. The detail I left out was that I’d lost my appointment card for the second time in 3 weeks, a feat I’m not proud of. My first one lasted me 4 months. I seem to be determined to challenge the hospital’s appointment card budget since then.

The waiting began. I quite like waiting at the hospital. Sometimes I treat myself by not listening to any music and observing the world around me. It’s quite soothing to sit and listen to random conversations. The next thing I know, I’m jolting myself awake with my head propped up by my palm. Apparently, eavesdropping is too soothing. I wouldn’t make a good spy. At least the seats in the waiting area have armrests – I’ve been to hospitals that have horrible little plastic chairs with nothing to fall asleep on. They’re actually quite comfortable at The Christie. I checked the time – only 30 minutes had passed. What to do next?

Anna is working down in London this week so my mum came with me. Due to covid rules, no one has been allowed to attend the hospital with me throughout the time I’ve been receiving treatment. An exception to the rule is that you are allowed to be accompanied by one person when you have face to face appointments. You are actually encouraged to bring someone with you to help support you, and so you can both process the things being said. It is useful as putting the onus on the individual with cancer can be risky business. As a patient, staying focused isn’t always easy as an oncologist sits informing you about this medical procedure that will do that to your tumour and potentially leave you with this and that problem. Sometimes you sit nodding and smiling, thinking about how much you wish the tumour would just fuck the fuck off forever. That doesn’t do you much good, though, does it? Unless the wish works, but it probably won’t.

To my surprise, the hospital seem to have caught up with the rest of the country and relaxed the rules. There is no longer a desk as you walk in, surveying the people who are trying to gain entry to the hospital. It didn’t occur to me until this moment, as I tried to stay awake in the waiting room and pondered what I could do to keep myself conscious. “Oh wait, there’s no one restricting entry to the hospital anymore. I’ll ask my mum to come and join me here!” It was a true BINGO! moment. I’m sure a lightbulb appeared above my head for a second; I hope it didn’t disturb anyone around me in the waiting area.

My mum had been sitting in a cafe across the road from the hospital. She was having a coffee with our friend Julie, the daughter of the infamous Nigel, the 75-year-old pancreatic cancer slayer. He is a mainstay in this blog and it is a mandatory requirement that I bring him up at least once in each five posts. His daughter ain’t bad too. She got me the below card today to celebrate the last chemotherapy session on Saturday. Their family are always doing thoughtful things for us and I wouldn’t have found them without the blog. It is one of its greatest achievements!

Julie’s Lovely Card to Me!

Julie and mum made their way over and appeared in the waiting room a few minutes later. We went to the M&S cafe to wait for my name to appear on the screen. They have screens in that area too but I usually don’t wait there as I have no one to drink a coffee with, so it feels a bit pointless. We sat chatting and having fun. I ate a few oranges and drank a coffee. Still, no name appeared. I was keeping busy, though, so it didn’t matter.

It only started to matter when I noticed a group of the blood nurses walk past in their pedestrian clothes and with their personal bags. “That’s strange,” I thought to myself. It was 15:40 now – over an hour past my planned blood time and 20 minutes past my oncology appointment time. I’d also noticed that no one was being called into the Bloods Offie on the screen anymore. All of the appointments were to the oncology department or The Chemotherapy Ward. “I’m going to ask at the desk and see if everything is Ok.” My mum and Julie encouraged me to do so, and off I went.

No one was waiting at the desk this time, and one of the receptionists was packing away her things. I approached the other one, a different woman from earlier, but still someone I didn’t recognise. “My blood appointment was meant to be at 14:15 but I still haven’t been called. I’m pretty sure I just saw a cohort of the blood nurses leaving. Could you check how much longer it will be?” The receptionist looked concerned. “They all go home at quarter to four. I’m not sure if any of them are still in the office.” She rang through. Luckily, one nurse was still there. The receptionist hung up the phone and started focusing on the computer. “Oh, I’m so sorry, Daniel. You weren’t checked in properly. They didn’t know you were here. Your oncology team are at least an hour behind schedule anyway so it’ll be fine,” she told me to go through to the bloods office.

The nurse was really nice. We chatted about my tattoos and, to my surprise, she guessed what the ’42’ was in reference to on my wrist (it’s a reference to Hitchhikers Guide to the Galaxy, in case you’re wondering). She also laughed at my ‘Are we compelled?’ tattoo. It is on my right arm, right below the crease above the elbow…the exact spot where these blood-suckers extract my blood from every time. “You’d think I got it after I started treatment to stick it to you guys, wouldn’t you?” She laughed. “You aren’t compelled to show up, just don’t expect to beat cancer if you don’t!” It was a good point. The blood nurses won this round, even if it does pain me to say it.

I made my way back to the cafe, cotton bud attached to my arm and a smile on my face. It’s always nice to get the blood test out of the way for another cycle. This time there isn’t another cycle… even better! Julie left us at around 17:00. We thought it couldn’t be much longer before we were seen. Mum and I decided to move to the waiting area as they often call your name before it appears on the screen when you have face to face appointments. They finally called us at about 17:45. I’d figured this trick out before, though. They call you into the consultation room to take your weight and blood pressure, then leave you there to wait longer. Tricksie, but not tricksie enough. There’s no swindling me, dear Christie hospital. When the nurse asked me if I wanted a cup of tea, I knew we were in it for the long haul. Good job I like waiting; I’m preparing for purgatory after all.

We actually didn’t have to wait very long for the oncologist to see us. Probably another 20 minutes or so. That’s the easy mode of waiting – I wait 20 minutes for things all the time. Sometimes I wait even longer. Although we didn’t learn anything new in the meeting, it was good to get some face to face time with the oncologist. You don’t get time with them very often, so it is nice to ask some questions and discuss how things are going with them. He reassured me that my case is almost definitely going to be passed over to the surgeons, but then they will have to make a decision as to whether the whole tumour can be removed (best-case scenario), or if Nano-knife will need to be used to attempt to remove the tumour instead (second best-case scenario which means that the tumour is still too close to a major artery to remove in surgery). Nano-knife is a procedure where they use two electrically charged needles to shock the tumour, hopefully killing the cells. I didn’t actually realise that nano-knife was INSTEAD of surgery – I thought it was a means of getting to surgery by killing the tumour cells near the artery. A quick Google search tells you that it can be used for either method, but that there are few recorded cases of it being used as a pre-curser for surgery. Fantastic – another opportunity to be an outlier. Bring it on.

The next steps are: do the final session of chemotherapy on Saturday, attend the CT scan on Tuesday, and then get the results of the scan two weeks later. Apparently, I’ll have a few weeks of recovery no matter what is decided as the appropriate next step. I can’t wait to be 3, 4, 5 weeks away from chemotherapy. I’m really intrigued to see how much better I feel the further away from a treatment day I get, and if I’ll see a big difference in things like my energy levels. It also feels like I can confidently make plans for the first time in a while, even if only for a month or so. It’s good to feel like I have achieved something, and Julie’s thoughtful card is what put that feeling in my brain. I’ve made it to the end of chemotherapy, and it’s gone pretty well overall.

Life is good right now. Let’s hope the scan results get me one step closer to being one of the few who actually survive this bastard cancer. And if I don’t and I end up in purgatory, I’ll be well-read in the art of waiting. Even whilst everyone around me has their name called out. Give me a coffee and an orange and I can wait forever. I wasn’t even signed in, anyway; I do this for fun.

Chemotherapy and Motivation

Time is passing by too quickly again. It’s somewhat a good thing considering I’m in the first week of the chemotherapy cycle, and always wish for this time to dissipate so I can enjoy the ‘recovery’ week. Of course, the recovery week isn’t really that. Week 2 is often where my mouth ulcers start playing up. I looked at my tongue in the mirror yesterday and noticed that I have some kind of scarring all down the side of my tongue. I read a bit about it and apparently your mouth recovers quickly so I’m hoping it’ll be back to normal after a few weeks sans chemo. The cycle is plagued by lethargy, though – my number one enemy. There is nothing more frustrating than having big plans for your day, only to lay down and not get back up for hours. It happened Tuesday, it happened Wednesday, and it nearly happened yesterday. I managed to finesse it on Thursday. Just.

I was laying on the sofa with the dogs and I was fast asleep, unbeknown to me. It wasn’t a planned sleep. It was one of the chemotherapy surprise sleeps where you wake up and have to recalibrate for a few minutes, figuring out which world is the dream and which is reality. The doorbell went and the usual scurry ensued – Dexter, my mum’s dog, suddenly bounced up and started barking to high heaven, surveying the house and being as obnoxiously loud as possible. He has obnoxious down to a tee – last night he brought in a plant pot from the garden, shook its contents all over the lounge floor and then pulled the plastic pot apart, just to make sure it really annoyed whoever was lucky enough to discover it later. Anna found it and she was very annoyed. Mission accomplished, Dexter.

Through the haze, I heard my mum greet someone at the door. The voice was that of my friend Finch – he had come to collect an item of clothing he had left here earlier in the week. He popped his head around the door just before he left. I’m not really sure what we said to each other, or if I said anything at all. Whatever happened, I wasn’t really a part of it. I just remember him smiling at me and saying bye. That triggered something in my brain. All of a sudden, I was determined to not let this be another throwaway day. I didn’t need the sympathetic eyes of an onlooker making me feel broken, like those looking into the enclosure at a zoo.

After another ten minutes or so of questioning how committed I really was to moving from the sofa, I finally got up. I went straight upstairs and got my running stuff on. Enough is enough. When they weighed me before treatment at the hospital on Saturday, my weight had increased to 76.7kg. That should be something to celebrate, but I actually think it is starting to get too high. It is much less worrying than the 63kg I recorded last November. I still feel a pressure to keep my body as healthy as I can under the circumstances, though. The last month has been laced with inactivity and illness; I really haven’t done a good job of keeping myself very active. Even walking the dog has been a bridge too far most days. I do tend to eat quite well, so at least I have that on my side. Apart from the occasional croissant… I had three in one day whilst I was in London last week. You can’t get nice croissants near my parent’s house in Cheshire so I thought I’d overindulge whilst I had the chance. But other than subsiding on croissants alone for three days, I have an alright diet.

I stood outside the house in my shorts, long sleeve shirt and gloves and braced as I started my running watch. It was always going to be a crappy run and I knew it. The temperature was also quite warm, about 14 degrees celsius, but my hands and feet just felt freezing. I had to wear extra thick socks to try and get some feeling in the end of my toes, but it didn’t really work. For the duration of the run, I kept trying to figure out if I could feel the end of them or not. They’ve been tingling for about three weeks now. I told the nurses and they said that it is still permissible to continue with treatment, so long as it isn’t stopping me from walking. The risk is that the chemotherapy permanently damages the nerve endings, something which the medical team try and avoid. The alternative is to lower the chemotherapy dosage, but it seems pretty pointless to lower the amount of a drug to save your nerve endings if it may make those drugs less likely to save your life. Here I was successfully running, so balancing didn’t seem to be a problem. It’s not a problem until it is, though, and when it is a problem, it likely ends with my face on a curb and legs extended to the sky like a totem pole. Not worth thinking about, just keep running. I got some funny looks because of the gloves but I’m way past caring about funny looks.

I just about managed to finish the 5km. It took a lot more walking than I’m used to, but that’s Ok. My heart rate kept sitting at 190bpm so I figured the least I could do was walk in intervals. As I got back into the house, I retreated back to the sofa and had a well-earnt nap. I did feel like I’d achieved something, which made me feel better. It made me reflect more on the week thus far.

I’ve felt more paralysed than I am used to this week. I’m not sure if it falls into the category of depression or is just the known side effects of the chemotherapy culminating – the lethargy and tiredness in practice. I’m trying to take more of an active role in critical things going on in my life, such as reaching an agreement on a return to work and applying for the various government grants that I need now that the employer’s statutory sick period is up. It is hard to stay motivated and I’m frequently hitting hurdles. I called to ask for an update on one of the Government grants and they informed me that the next stage is an interview. When I asked them if that would happen soon, they responded that it would likely be the end of June. Despite them backpaying you the money if you get approved, it makes me wonder how people survive in this situation. I’m lucky as I have parents that I can live with, a flat I own in London that I can rent out and an amazing family who are always offering to help me out. I’m sure that others aren’t so lucky. There are just so many things that you don’t want to have to think about in this situation, but you find yourself worrying about them constantly. You actually have more time than ever to ponder things. It can be quite dangerous if you have an active mind. I consider mine quite active, and I am starting to struggle to occupy myself lately.

That is why it is important to stay motivated. It almost doesn’t matter what you are staying motivated for, so long as you are feeling it. The runs help to motivate me. I ended up going out in the afternoon and walking the dogs with my mum too, which also lifted my mood (and earnt me another hour of nap and a bath last night). They sound like little things, but they make a big difference to my energy levels and mood. Those small changes in energy level and mood then give you another 10% worth of effort to put towards something difficult that is on your mind. Yesterday, I made a few more calls and sent a few more emails about the grants and the return to work in the afternoon after getting back from the run. That left me feeling much better last night.

Now, I’m off to Whitby for the weekend to introduce little Lucy to the sea for the first time. No more worrying about any government grants until next week!

72: A Post About Averages

The Road to Recovery

Sleeping on the Sofa with the Dogs – Typical Week 1 of the Chemotherapy Cycle

This will be my 72nd (published) post on the blog. As soon as I saw that the last one was 71, I knew what I wanted to talk about in it. 72 was not a significant number to me a year ago. My readers who are familiar with pancreatic cancer, or are good at internalising figures and have read my blog for a while, may know why 72 is a significant number now. It is the average age of diagnosis for Pancreatic Cancer victims, or I believe it is anyway. Originally I read 76, but I have since read 72 on various charity websites, so that is the one I regularly quote now.

I feel guilty for frequently using this statistic to comfort myself. “You’re much younger than the average person with this cancer, that must count for something.” It isn’t just me who says these things – I get it from doctors, nurses, friends and family. It does bring me some comfort. You have to find ways to cope under the circumstances you find yourself in. When I sit down and think about those people being diagnosed in their 60s, 70s and onwards, though, the feeling isn’t one of comfort. I feel sad. Even though it is better to be diagnosed with cancer at that age as opposed to in your 20s because you will have lived a lot more of your life, you still have a life that you want to hold on to. You likely have children you love, and you may have grandchildren you want to see grow up. It cannot be easy being diagnosed with pancreatic cancer and having to read the bleak statistics around it, knowing that you cannot find the same natural defences against these figures. The typical diagnosis is also in advanced stages – mine was locally advanced. That means that a lot of these people are also being diagnosed too late, making their chances of long term survival even slimmer. It is sickening, really. I’m not sure if locally advanced actually falls into the category of ‘advanced stages’, but I would imagine it does. I think, because of my age, the oncology team just felt that there were a lot of options for me. Perhaps there wouldn’t be so many if I was 72, I’m not sure. It still guarantees me nothing, of course. But there are no guarantees in life. We’re regularly graced with threats of nuclear war in the news right now. It isn’t a nice place to gain some perspective on my personal circumstances, but I cannot help taking some from it.

These feelings are tempered when I consider the case of Nigel, who I have spoken about on this blog a few times. His daughter contacted me through the blog and told me about his story. He was diagnosed at 71 – a year short of the average. I first spoke to him on the phone about what happened to him. He was diagnosed and given 8 months to live. After having an incredibly successful bout of chemotherapy, his tumour had reduced by 55% and the cancer, which had previously spread to his lymph nodes, had completely disappeared from them. Nigel finished his 6 months of chemotherapy treatment still believing that it was palliative, before receiving a phone call from the hospital a month later informing him that they were willing to try and operate. He’s now 3 years clear and full of beans. We’ve met up frequently and our families have become close. They’re invited to Anna and I’s wedding and I can’t wait to celebrate the day with them. Their support has been incredible and unrelenting throughout my treatment.

Nigel During His Treatment – Taken By His Lovely Wife circa 2018

His story is unusual, though. The statistics will tell you that much, although I’m not going to dig into them too deeply here. I’ve done all of that in previous posts and I’m trying not to dwell on them too much; no matter how young you are, they don’t give you a lot of hope for survival. Nigel’s story tells you that dwelling on the statistics isn’t helpful. It actually tells you that it isn’t worth dwelling on the things being said to you by the medical team too, but that is much harder to implement in my experience. If my team told me that I had 18 months, I don’t know how I’d hold myself together. But, I would have said that about any cancer diagnosis a year ago, so I actually feel confident that if something like that does happen to me, I’ll find a way through it. Especially with the support that I have around me. You quickly adjust to things – just like how we all adjusted to the ‘New Normal’ during Covid; the lockdowns, the new rules, the changes to social etiquette. We always adjust.

So, I strive on toward recovery. Not an average, not a number, not a statistic. Just another person with cancer who is trying to beat the odds, whilst trying not to dwell on those odds. My chemotherapy line will be taken out at some point today when the district nurses come round – that always makes me feel good. I finally get to shower again! Then I have one more session of chemotherapy before the big scan, which has been booked for Tuesday, May 17th. It is a bit unusual that it is booked in week 1 of the cycle – it was in week 2 last time and I thought the oncologist said that this was the most logical time to do it. I don’t mind, though. I might be feeling a little bit dodgy that early in the cycle but you get pretty good at feeling dodgy when you’re on this type of chemotherapy!

I came across an inspiring story yesterday. Of course, its origins are tragic, as they often are with pancreatic cancer. Pia Eaves was a loving wife and mother of two daughters. She died of pancreatic cancer at the young age of 54, only 11 months after being diagnosed. The Walk for Pia campaign is a challenge created by her family to raise £100,000 for Pancreatic Cancer UK running from April 20th until May 1st, yesterday. During this period, they walked 200 miles and have raised over £90,000 – an absolutely incredible feat. I am totally in awe of them. Pia was a fitness instructor and kept herself in good shape. She was also well below the average age of diagnosis for a pancreatic cancer sufferer.

It was hard for me to not relate to what I was reading as I studied the website, reading the details of her life, and the disease which ultimately brought it to a premature close. I was running ultra-marathons just weeks before I went into the hospital, where we started to establish that what was wrong with me was not going to be easily sorted. Things continued to spiral downwards from there. The PET scan and endoscopy procedures are to thank for my diagnosis. Before that, the medical team seemed sure that my issues were all caused by a cyst on my pancreas, leaving me jaundiced. I’ll never forget the look on their faces as they walked into the room to deliver the final, crushing diagnosis… pancreatic cancer… spread to the artery, but not spread outside of the pancreas… straight into treatment… need the chemotherapy to ‘take’… an extremely aggressive form of cancer… the condolences as they left the room… the cries that echoed around me… the grin on my face and the shaking of the head… How is this really happening? I still ask myself that sometimes, but less frequently now. It doesn’t matter how it is happening, it just is. There isn’t a why, there is only a what. I’m ok with it.

On that note, I’ve been looking at jobs in cancer charities that I believe I could do with my experience and skills. There are a few in data and analytics that sound appealing. It made me feel motivated and empowered, feeling like one day I could be wearing my survivor status with pride, and using it to energise myself in a role making a difference in people’s lives. People who are suffering in similar ways to the way that I have suffered, striving to survive in the way that I am. There are so many of us out there that it forms more than just a community – it is a whole section of society. It only seems to be growing in number as the field of medicine identifies more effective ways to diagnose, and is successfully doing so earlier. I’m not even sure I would have been diagnosed 30 years ago with the symptoms that I was displaying. Maybe not even 20 years ago. I think it shows that I am in a good place that I am seriously considering a long term future, and what plans it might hold for me. Hope is a valuable thing when you’re fighting a life-threatening cancer. Even when the statistics tell you that you have a 1% chance of surviving 10 years past your diagnosis, you can hope harder than anything that you are in that 1%. Let’s see what the scan says, and what the next stages of treatment will hold. It’s an exciting but scary time, but it is necessary to move things along.

I want to dedicate this post to everyone who has been affected by cancer. Whether you are grieving a loved one, a sufferer yourself or you work with people affected by it. There’s a lot of pain and suffering involved in cancer, but there’s an opposite side of the coin where it can bring out amazing things in people; raising £100,000 in memory of a lost mother, to the benefit of the thousands of people who will be diagnosed with pancreatic cancer every year. I read on the website that around 8,924 people die of pancreatic cancer every year – an average of one person every hour… yet the cancer only attracts 2.1% of the UK Cancer Research Budget, it is the 5th deadliest cancer in the UK and has the lowest survival rates of the 20 most common cancers. As a sufferer of the cancer, the biggest source of hope I have found is by speaking to people who have beaten these odds, and who continue to send me messages of positivity, encouragement and unfaltering support. They tell a different story to the statistics – one that you rarely find online. That story says that it is beatable and that there is a future beyond it.

Heartbreaker Lucy – The Ultimate Chemotherapy Companion

Legs Eleven: The Penultimate Cycle

The Chemotherapy Diaries

Another treatment day rolls around. I had secretly hoped that my platelets would be too low for treatment to go ahead. My pre-treatment bloods appointment was on Friday this time at 11:05, the day before I come into the hospital for treatment. I’ve developed a habit of looking at the amount of blood on the cotton wool when I take it off my arm after my blood test. If there is a larger amount of blood on the wool, it is an indicator that my blood platelets may have been lower because my blood hasn’t clotted as quickly as usual. If there is only a small speck, I know that they’re likely to be fine. As I sat in the car park, about to drive home, I took the cotton wool off and assessed it. There was more than usual, but not as much as the last cycle where treatment had to be delayed due to low platelets. For the rest of the afternoon, I kept my phone close to me in case the hospital called. They didn’t, and I find myself starting to write this whilst sitting on the chemotherapy ward, receiving treatment number 11. It is for the best that it has gone ahead really. I’ve only got to do this one more time after today and then I will have finished the full 12 sessions. My future from there is in the hands of my oncology team.

This morning, I signed in at the desk as normal and handed over my hospital appointment card so the receptionist can write down my next fortnight of appointments. I sat down for about 3 minutes in the waiting area before my name popped up on the screen. One of the advantages of having your treatment at 8:30 in the morning on Saturday is that you beat all of the chemotherapy queues. When I attend appointments during the week, I sit listening to the chitter-chatter around me in the busy waiting room. British people love to complain about trivial matters, so when you throw cancer and chemotherapy into the mix, they really get the wind in their complaint sails. I understand it to an extent and I have certainly commented on the wait times to friends and family, but some of the conversations you overhear in the waiting room start falling under the ‘toxic’ category. “I’ve never waited less than 2 hours for any appointments at this hospital. They’re absolutely useless,” one elderly man said to a lady sitting next to him as I waited for my blood appointment on Friday. I laughed a bit to myself and he turned and shot me a glance. I didn’t return the gesture – I’m here to fight cancer, not someone’s grandad. It was such a gross exaggeration that I couldn’t help but laugh. I also don’t like the way that they try and influence any stranger sitting near them that will give them an ear too. It just feels wrong. Notice that I used the word ‘commented’ instead of ‘complained’ when referring to myself… I’m clearly tactically absconding any guilt I may feel at having complained in the past. I don’t try and influence people around me, though, and I remind myself that the hospital is running a complex operation involving people’s lives. We should be grateful that we get such incredible care without being bankrupted. I appreciate that it is hard to fully feel that when you have waited for two hours to start your chemotherapy treatment, but we should still try.

Anyway, I made my way upstairs and sat down in the chair. I opened up my appointment card to see that I have an appointment with my oncology team this cycle. That is quite unusual. The nurse handed me the steroids and anti-nausea medication to take before my treatment starts. “Do you know if it is standard procedure to meet with your oncology team during cycle 11?” I asked. “Yes it’s part of the standard protocol,” she replied, smiling at me and putting her hand on my shoulder. “Thank fuck for that,” I didn’t mean to swear, it just happened. The nurse laughed. I had to take my top off so they could reach my port to insert the needle. There was a student nurse shadowing her today, which meant I had to talk two people through my tattoos this time instead of just one.

Once the treatment was up and running, I studied my appointment card again. Next to the final treatment appointment, the receptionist had written ‘last one’. They usually leave this column on the card blank. I wondered if this was her communicating a positive message – “you’ve done it,” I read in the subtext. Maybe that’s just my mind romanticising things. The same thing happens when I see my hospital number and think about its familiarity now. It feels as comfortable as my middle name or the numbers that make up my birthday. When I picture my hospital number in my head, it has a blue background like the hospital appointment card. I want to get it tattooed on me one day. Hopefully, it will carry a message of survival and strength, not one of sad solace. A song that means a lot to me came on random through my headphones as I sat contemplating it. The moment felt anthemic, like a scene from a film when something significant happens and a song introduced earlier in the theme comes on to underscore it. Is this what real hope feels like? I hope so. Hopefully, I’ll hold onto it until the scan.

“Last One” – My Appointment Card

I’ve made the nurses a cappuccino cake today. It has gone down very well. The cake consists of two chocolate sponge cakes, with whipped cream used to sandwich them together and then to decorate the top. The whipped cream has a small amount of strongly brewed coffee added to it. You have to let the coffee cool down before adding it so it doesn’t spoil the cream. The top is then dusted with drinking chocolate. It’s a very delicious cake if I may say so myself, and if I may not, I have been told it is delicious by 6 nurses so far, so it is delicious. Capiche?

Cycle 10 was a weird one. Having tested positive for coronavirus right at the start of the fortnight, I had a rough first week. Most of it was spent sleeping and feeling extremely lethargic. My throat was hurting a lot from coughing, something which doesn’t seem to be abating despite me not having a consistent cough for over a week now. I’ve also been feeling much shorter of breath than usual. About a week ago, I was baking when I started feeling very light-headed. Looking at my watch, it told me that my HR was 115 – very high considering I was standing idle and mixing some ingredients together. I had to go and lay down for 20 minutes then make my way back to the kitchen to resume. It shot straight back up again as soon as I did and I gave up caring. The cake won’t make itself. I think that was the first time I made the cappuccino cake, come to think of it. I always practice the cake I’m going to make the nurses earlier in the cycle to test it. Maybe it was the anticipation. If it was, entering Bake-off would definitely give me a heart attack. Would be good for ratings though, I guess.

There was a huge positive in cycle 10, though. I finally made it to London for a visit! My good friend Dan took me in for a few days. I knew I wasn’t in hospital until the Friday for my blood test and I was feeling pretty up to it, so I figured it was as good a time as any. I headed down on Monday and stayed until Thursday. I saw my lovely sister Becky in her workplace at The British Library. I hadn’t been in the building before so she showed me around. We had some delicious kombucha, a drink that my other sister, Josie, used to brew when we lived together in London. I’m not sure if you’ve ever seen kombucha brewing, but it is disgusting. She used to brew it in a large glass bottle on the kitchen counter. Inside was a cider yellow liquid with a thick culture floating in the middle. It wouldn’t look out of place in a horror film, in that scene where they pan around a dimly lit room with unusual-looking objects in jars of fluid, some reminiscent of human or animal remains. I tried to block the image out of my head as I sipped from the bottle. This kombucha was raspberry flavour; the raspberries really performed a miracle. The pleasant taste of the drink was stronger than the memory of brewing kombucha and I couldn’t pay it a bigger compliment.

My other lovely sister Josie (Kombucha Josie as she will now be known in the blog) and her husband Keiran then took me out that evening to Mowgli, an Indian street food restaurant that I’ve been wanting to try for a while. Keiran likes to brag about how rich he is after a couple of good years in his job. I let that slide so long as he offers to pay for things. You gotta put your money where your mouth is if you’re going to make those claims! And he did, to be fair to him. He’s also one of the funniest people I’ve ever met, so he does bring a lot to the table. That’s pretty much what he wanted me to say anyway. He paid healthily for that compliment so I hope he enjoys reading it.

The trip did so much for my mental well-being. You can get trapped in cycles in life and not realise how negatively something is affecting you. My cycle is mostly centred around my treatment. I didn’t realise how much the constraints of it were weighing on me. Doing something which feels nuanced and different can trigger a change in your mind. As I sat on the train home from being in London, I realised that I have been stuck in a bad place. For all the love, support and care that I feel from my family, the people who message me through the blog and beyond, I feel bad saying it. There are so many amazing people supporting me and I’m incredibly grateful to everyone. The human mind is complex, though, and you yourself can be clueless as to where your head is really at. I felt a calm and pleasantness that I hadn’t for a while. It felt like I’d achieved something. I managed to see a few of my amazing friends whilst down there too – I thought about them and smiled. I can’t wait to go back.

It almost certainly comes through in the blogs. The fact that the volume of blogs has decreased so much probably speaks for itself. I haven’t been filling my time differently and I’m still not working, so it isn’t due to any changes in the amount of time I have available to do it. It’s hard to put yourself out there when you are feeling down; I’ve certainly felt more conscious of the things I’m writing and how negative they sound, which makes me withdraw more. I’ve also felt quite critical of myself recently, not finding the things I want to write about interesting enough, and so deciding to scrap a lot of ideas. I’ve also had a few tough cycles in a row which bring their own challenges. Still, the blog started out as a place of escape. I hope that it remains that way. It is feeling that way at the minute.

Again, I want to thank everyone for their support. I wrote something on LinkedIn last month and received so many messages through that platform, from old friends as well as a few strangers who related to the content. It speaks again of the power of social media and the benefit to be derived from it. I was slow to respond in some cases but hopefully, I got back to everyone. If I didn’t, send me another message telling me how horrifically rude and undeserving of your well-wishes I am. I can take the criticism. I’ve got cancer and I seem to be dealing with that. Sort of. Sometimes.

That does remind me – I received my first ‘hate’ comment on the blog. It was quite comical and I wish I hadn’t deleted it from my ‘Spam’ section. I actually regret not approving it and letting it sit on the blog. It started off with a backhanded compliment saying something along the lines of “This blog post had such potential. It was unfortunate to find just another person complaining and moaning about things in their life that they should be grateful for.” The person actually wrote quite the paragraph critiquing me. The funniest part is that they had written the comment on one of my older blog posts which really wasn’t very negative at all. I read it back and felt genuine confusion over it. Maybe they had written it on the wrong post? I’m not sure. It’s good to read someone’s opinion, though, and I actually agree that I have moaned about things in this blog that I should feel grateful for. It’s hard to have that sort of purist approach to everything in life though, right? I think I am quite a conscientious person generally, and I like to try and check myself on the things I am feeling, saying and writing. The only reason that I deleted the comment was that it didn’t feel like it was offering me a lot of value to have publically sat on the blog, alongside other people’s sincere comments, where they are sharing personal stories and well-wishes. Next time I will approve it I promise, whoever you were. I’m ready for round 2.

It’s been a while since I’ve shared any Lucy content. The below video may fool you into thinking she is running through extremely tall grass. She isn’t. She’s just THAT small. Damn, she’s just that cute, too. We like to put videos of her in slow motion to add to the comedy. I hope you enjoy!

Lucy Running Through the Grass

Aiming to be Less Aimless

The ‘C’ Word

I remember being in primary school and making jokes about Coca Cola having drugs in it. At the time, I’m pretty sure it was only based on the fact that ‘coca’ was in the name which sounded a bit like ‘cocaine’, not on any research we had done on the brand; we were about 10 so I’d be more concerned if it was based on research. Come to think of it, it’s strange that kids were making jokes about cocaine at all but I think when you’re that age you are good at sensing what feels ‘taboo’ and leaning into it. I remember it also being the age where we started to indulge in swearing. There was a teaching assistant at the school who used to giggle at us saying mild swear words like ‘crap’ and the occasional ‘shit’. We had a lot of fun with her.

Since then, I’ve heard it said that the drink used to have cocaine in the formula. I’d never really looked into it or thought too much about it, but I’ve been sceptical every time someone has said it. It smacked of an old wives’ tale based on the brand name. Today, for some strange reason, I looked at the logo for Coca Cola as it sat on my television screen during an advert and started to really wonder where the name does come from. Time to do some research.

It turns out that the first recipe was created by a man called John Pemberton in 1885. John was a Confederate Colonel in the American Civil War, during which he was injured and became addicted to morphine. His intention was to create a substance which would cure his morphine addiction. A classic tactic to recover from an addiction – finding another substance that you deem less bad and getting yourself addicted to that instead. Like quitting smoking by becoming addicted to vaping.

In the original recipe were the ingredients Coca leaves, the plant used to produce cocaine, and African Kola nuts, which provided the drink with caffeine. These key ingredients formed the brand name. It was originally created as a tonic wine so was alcoholic, however the following year prohibition was introduced, so he changed the formula to make it alcohol free. Don’t worry – there was still plenty of coca in there. And Kola, presumedly.

Coca and opium tonics were becoming all the rage at the time, with people like Sigmund Freud claiming that consuming them can provide significant health benefits. Two of the ailments they believe it helped to cure were impotence and depression… How wrong they were about both of those things. I was surprised to read about Sigmund Freud’s love affair with cocaine, but then I wondered why I was surprised. I know hardly anything about the guy, other than the fact that he was seen to revolutionise the field of psychology, I believe. He wrote an essay titled ‘Über Coca’ (translates to ‘About coke’) which is both incredibly satisfying to say and also reminiscent of most of London’s streets on a weekend – lots of Ubers around and lots of young professionals with moon-pupils climbing into them, looking fidgety.

By the year 1900, cocaine use was much more widespread in society. This meant that the negative effects of it were also becoming better known, and in 1903 the Coca Cola company caved to public pressure and removed the coca from the drink. I wonder if they knew that a legend would be born that day. The old wives’ tale that is actually true. So true, in fact, that it remains part of the brand name to this day – a brand that is one of the most recognisable in the world.

So, cocaine wasn’t only in the drink, but it was actually seen as appealing enough to stick in the brand name itself to make sure people knew that they were getting coca when consuming it. I find myself more boggled at how many times I have seen the name Coca Cola in my life and never looked into it. It goes to show that we become acclimatised to the world around us. Huge brands like Coca Cola are so omnipresent in our experience that we barely even notice them. Worse, we probably feel comforted by them. I say that this is ‘worse’ because we stop really seeing or trying to understand the damage they are doing. We welcome the Coca Cola logo like a good friend as we walk into a bar whilst on holiday. Some people I know really do only drink things like coke and claim to not ‘like’ water. It’s absolutely crazy.

I read that the brand is now sold in over 200 countries. I then Googled ‘How many countries are in the world’ and Google responded with “Well, curious Daniel, there are 197 countries in the world.” I then Googled ‘How many countries is coke sold in’ again just to double-check and it really does say it is sold in over 200 countries. Not so smart now, are you Google. The fact is that it is sold in almost every country in the world, and I read online that the ones they do not directly trade in, local businesses import it to meet local demand. You can’t go anywhere without seeing it; every time you see an article about oceanic plastics, there’s a cover photo with a coke bottle or can in the middle of the pile floating in the sea. It’s quite depressing.

So, how am I attempting to relate this to my writing? I’ve been approaching the blog in a way that feels a bit aimless recently. It has been my assumption that so long as I am living and breathing, I’ll find things to write about and it’ll be fine. There’s also various ‘series’ that I contribute towards such as The Chemotherapy Diaries which provide a regular cadence of posts. I had hoped to do a bit more writing for other sources as I have been approached by a few, but none of these have come to fruition yet. As a result, I haven’t been writing too often for the blog. Sitting there reading about the history of Coca Cola, I realised that there are always things to write about if you’re looking for them, and if I’m interested enough to continue reading, others will probably be interested in it too.

And it is true too that you can become so familiar with something that you stop appreciating the depth of the issue at hand. Coca Cola may have got rid of the coca from their recipe, but they have kept the reference in their brand name. There aren’t many people who think twice about it now. It is so recognisable that it is considered irrelevant to most people what it means. It has become its own meaning, without needing to be broken down into smaller parts that explain the nature of the product. When it was made, it was appealing to the consumers to remind them that it contained coca in it. Only 20 years later they already didn’t want to drop the brand name, despite the namesake ingredient being removed. Now nearly everyone in the world know what the name Coca Cola refers to – it’s a mysterious black liquid that dentists and doctors warn you off during the day, then kick back and enjoy at night (probably). The most common thing I read in my research was that the recipe is secret and only a few select people know it; I wonder if they still get the caffeine from African Kola nuts… Who am I kidding, they obviously grow caffeine in labs now.

It’s coming up to 6 months since I was diagnosed and I’m nearly at the end of the 12 sessions of chemotherapy. The current routine has all become very familiar for me and perhaps, even, normal. I’m able to analyse a chemotherapy cycle and decide whether it is bad, good, or somewhere in the middle fairly quickly. My condition seems to finally have stabalised of new symptoms popping up too which is a relief – I was getting tired of raising new symptoms with my oncology team and hoping to be patient zero for that particular side effect. The jaw locking was the closest I came, but they shrugged it off as another muscle response to temperature. I’d always be excited to bring my new issues up during the check in calls, seeing it as a game where I was trying to find just one symptom which seems to shock or worry them in any way. “My nose has been bleeding again and I never used to get nosebleeds,” I enthusiastically say during a check in call. “Your platelets are lower than usual so it isn’t a surprise,” they reply in a monotone voice, thinking about whether they want a sandwich or soup for lunch. Damnit, I really am just another cancer patient aren’t I – a realisation even more degrading than getting the cancer in the first place.

The end of chemotherapy will certainly constitute a shakeup to the normality of the current situation. If I am told that I am going for an operation it will constitute an earthquake in comparison, in both a positive and negative sense. Positive because I will have finally been approved for surgery. Negative because I will have been approved for surgery – has anyone ever been excited at the prospect of surgery? Whatever happens, it’ll be the next phase. I’m learning to embrace progress instead of always hoping for improvement.

With the writing specifically, I’m going to try and establish a core aim when I am writing, instead of my current ‘freeflow’ approach. Although it is fun starting writing and not really knowing where you are going, it wasn’t the approach I had when I first started writing in the blog. I thought it may have just been a development in the way I write, but if I’m being honest with myself, it is probably more out of laziness. Perhaps a little bit down to not being confident enough in my writing too. Sitting and researching something to write about is something that actual journalists do – not Cancer Dan with the Cancer Blog. I’m not sure why I’d see this as some sort of barrier to entry. In typical fashion, I’m probably worried more about how things are being perceived and how I may be judged for then, as opposed to concentrating on just writing things I like and want to write. It’s annoying and I need to stop thinking about it like that.

So, things you’ve (possibly) learnt in this article – coke is for drug addicts, Dan can’t write coherently and this blog post talking about aimlessness has a real aimless feel to it. Voila. Like any resolution, I’ll start abiding by it next time I write.

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.

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

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…