Scan Day

The Road to Recovery

Saying Bye to Lucy Puppy This Morning

The day has come again…. attending the CT scan at the end of phase one of treatment. My last scan was at the half way point after 6 chemotherapy sessions, at the end of February, and produced good results. My tumour had shrunk from 3.2cm to 2.1cm, my tumour markers had come down considerably and the tissue around the artery was looking ‘healthier’. It was positive, but I struggled to allow the news to settle in as we left the consultant’s office. Anna cried immediately. I suspended any positive feelings I had. I’m not sure if it ever sank in fully. The results were then taken for review at the MDT meeting, a cross-functional meeting including those all-important surgeons, who still determined that I wasn’t surgery ready. It felt disappointing at the time. It wasn’t disappointing, though. I haven’t spoken to anyone who has had their chemotherapy interrupted because they were surgery ready. I’m sure it happens, but if the chemotherapy is working, why not continue? It wasn’t the reasoning that the oncologist gave as he relayed the decision to me at the time, but it is the bright-eyed-bushy-tailed interpretation that I decided to translate it into. That argument for continuing with the chemotherapy could be applied ad infinitum, I guess. Perhaps I shouldn’t suggest to the oncology team that I am happy to do chemotherapy forever. They may class it as a clinical trial and keep me in a cage to observe me. “He seems a bit distracted today and he hasn’t showered in 6 days. It’s quite disgusting,” they’d say. “I understand you, you know. I’m not a rat,” I’d respond, laying in my wheel like it is a hammock. They’d give me a funny look, write something in their report and walk off together in their white coats.

I find myself starting to write this post in the CT Scan unit (Department 11) of The Christie, drinking my dye drink every 15 minutes and acting like I own the place. It’s funny how much bravado you can bring on only the second time you visit a part of the hospital. I caught myself showing off that I knew the process. The nurse took me into a private room just after I arrived to do the introductory survey. Before she got to the questions, I said “I asked the district nurse to leave my line in yesterday, so you guys don’t have to use a new one.” What a hero I am. I’m sure she’ll be telling all of her friends about me for the rest of the week. “What a forward thinking-gentleman,” I imagine her saying to the team later, out of earshot of the rest of the room. Perhaps I should tell her about my blog, too. Although, I’m sure she doesn’t want to read about cancer to unwind from her job where she stares cancer in the face all day, every day. Maybe I’ll just tell her I’m a writer; that’s a cool thing to say, right? I can even say I’m published! Ok, I’m not going to say any of this, but it’s fun to pretend. She’s probably already forgotten about me in reality, and that’s the way it should be.

The nurse asks you what flavour dye you would like after you have completed the induction questionnaire. I go for blackcurrant, but the aniseed flavour easily cuts through it. Why are 95% of oral medical consumables flavoured like aniseed? (Please Note: statistics are not accurate and have been made up by the author). You are instructed to drink two cups of the dye straight away, then have one more every 15 minutes until you are called for your scan. It works out as approximately 900ml of liquid in one hour. I made a bit of a fool of myself as she handed me my bottle and cup. “It’s just one cup every 15 minutes, isn’t it?” I only phrased it as a question to hide my confidence; showing off was my prerogative. “Yes, but you need to drink 2 cups straight away too.” Damn, Daniel – you forgot about the initial 2 cups. She’s not going to read your blog now – any cancer clout you had, you just lost.

That wasn’t the end of my over-confident adventures in department 11. A woman asked a gentleman next to me in the waiting area if she needed to take off her jewellery. He responded saying he wasn’t sure but he thought so. I then cut in, confident as an ox and ready to dish out more knowledge on the lucky souls who happened to be in the waiting room with me that day. “Yes, you take it off and then leave it in a locker around the corner. They let you do it before you go in for your scan.” This wasn’t my first rodeo. She smiled and thanked me. “No problem, I responded.” BatDan strikes again. Just an ordinary man with an extraordinary appetite for helping others.

The nurse called me about half an hour later, once all of the dye had been consumed and I was ready for the scan itself. I followed her to the next waiting room, which is situated outside of the room where the CT scan takes place. A few minutes later, she calls me into a private room to flush the line that is attached to my port, and ensure it is working. The nurses flush the line using a syringe with a saline solution inside. They attach it to the end of the line, and then push it into your bloodstream to ensure that the device is working properly. Once they have confirmed it pushes in, they use another syringe to pull out some blood. It is unusual at first, but you get used to it. The saline solution is usually cold, and you can feel it as it makes its way into your body via the port in the chest. Watching them then pull blood out of you makes you feel awfully human. All of those lessons in science really told the truth – we’re just skin, bone and organs with blood circulating around us. Who knew? I was sure I was above it all. Maybe I’m not indestructible. I mention to the nurse that I need to take off my ring, watch and bracelet. “You’re only having your chest, abdomen and thigh scanned so you will be holding your hands above your head. You can leave all of your jewellery on,” she said, to my dismay. I seem to be full of bad advice today – I need to learn to keep my mouth shut.

Fifteen minutes later, I was called into the scan room. The reason that you need a line in during the CT scan is so an additional dye can be used during the scan. I’m not sure what the difference between the two are, I just do whatever the doctors tell me like a good student. The dye that is provided intravenously carries a warning – it feels warm around your genital area as it is pushed into your body. You are usually put through the CT scanner once without the intravenous dye, then the second time you receive a warning that they are issuing the dye and you may feel an ‘unusual sensation’. What they are referring to is the feeling that you may have wet yourself, but you haven’t. It is just a strange feeling of warmth around that area. It is quite disconcerting the first time – you get used to it by the fourth (I’m showing off again, aren’t I?) I’m unsure if it happens to both men and women, actually. The whole thing is very unusual, but over very quickly.

That was it. Another progress scan completed. I met my mum and Anna in the M&S cafe in the main part of the hospital. Our number 1 cheerleaders were waiting there with them – Nigel the Pancreatic Cancer Killer, his daughter Julie and his wife Mary. They all read the blogs (perhaps not Nigel, but I forgive him), send me lovely presents regularly and even come to the hospital to support me, like they did today. Not a bad group to have onside when you’re going through something as traumatic as this. We sat and chatted for an hour and a half before deciding to give the rest of the customers some peace and quiet, and go our separate ways. It was a nice way to round off the afternoon.

I’ve been feeling unusual today if I’m honest. It isn’t nerves, I don’t think. The scan itself is almost irrelevant – you have to show up, follow the instructions and then you’re on your merry way. The letter scheduling the follow up appointment where I will receive the results came through this morning, though. Thursday May 26th. I thought I had more time to enjoy the bliss of ignorance. The oncologist said it’d be 2 weeks which would have been the following week, but he probably meant within the next 2 weeks. It should have gone to the MDT meeting by then at least, so what I will learn in that meeting will really determine the next phase of treatment. It may have thrown me, though, as I wasn’t expecting it to be next week. I’m glad it is – the sooner I know, the better.

The other thing is that it is early in the cycle for me to be being so active. I usually have a few days before I have any time constraints or commitments, such as hospital appointments. My chemo-fog brain feels like it is operating on auto-pilot. It may explain my inexplicable ramblings about the nurse at the start of the post, but I’d probably do that anyway if I’m being honest with myself. I’m now sat at home reflecting on the ongoings of the day… all I need to focus on now is pushing through the cycle and getting to that results appointment.

Before I finish the post, my Fiancee Anna and her best friend Sophie are running their first half marathon this weekend. They are raising money for The Christie, the incredible hospital that is providing my treatment. I’ve always been fond of the below lyric ever since I first heard it, and it feels relevant here. The band is a christian metal band that you are unlikely to enjoy, but you don’t need to enjoy the music to appreciate a well-written lyric. Those of you who have followed the blog for a while have likely experienced the breadth of my musical interest – I will listen to almost any genre to find something new and interesting.

“The walls of a church don’t make it holy.

It’s what’s authentic that completes the sum of it’s parts”.

The intention of the writer is to give credibility to his religion, I believe. The sheer act of building a church doesn’t make it a special building, it is the value that is then applied to it by the people who believe that it is of greater meaning than another structure. They use it as a place of worship and it represents something more to them – these practices elevate its status and create authenticity.

I feel the words are so applicable to The Christie, too. There are many things about a hospital that provide it with authenticity – the qualifications required to work there, the complex equipment used inside and the knowledge that you went there that time when you broke that bone, and you left with a solution that ultimately fixed it. The Christie adds another layer of authenticity, though. The staff, and the way that they talk to you and treat you, is unlike any other hospital I have set foot in. You feel that they care about you, and it doesn’t seem like an act. I’ve had so many deep, interesting and meaningful conversations with the staff at this hospital. They’re always ready to support you, whether that is having a laugh or sitting down and digging deeper into what is upsetting you. Sometimes, you just want to be treated like a human, not another roadblock to someone leaving work. At The Christie, I’ve never been made to feel like anything but a valued customer in a complex ecosystem, which is full of charged emotions, tough revelations and, sometimes, utter despair. It is an incredible place, and I’m so proud of these two for raising over £1300 for them already.

I will raise money for them myself eventually, when I am healthy enough to do so. For now, I will include the link to Anna and Sophie’s fundraiser here. If you can donate, please do. If my requests to donate to fundraisers is preventing you from turning your gas on this month, please do not. I don’t want to carry the weight of that burden – I’ve already got pancreatic cancer, didn’t you know?

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.

Losing Hair

The Chemotherapy Diaries

Me and My Brothers in Primary School – Me, Freddie, Alfie and Greg (L to R). The Last Time I Had a Full Head of Hair

It feels like I haven’t written a lot for this series of late. I’m not sure why because I can’t see an obvious drop in momentum looking at the post dates. Perhaps it reflects the feeling that I have about me posting less on the blog generally, which I know to be true. I’m trying to cut myself a bit of slack, though. Making fewer posts but making them more interesting is better – right? I think so. Claiming that they’re more interesting is subjective I guess. I’m not even sure I believe that; it isn’t like I read back on my old posts regularly. My post dedicated to my good friend Drew Jones has been gaining a lot of attention these past few days according to the stats. I keep checking the news to see if he has been involved in a public scandal or something. I haven’t seen such news yet. Maybe it really is just sublime writing combined with a great character, a dangerous duo. Onto the topic at hand – hair loss.

I’m used to having very little hair. My hairline started to recede around the same time that I started puberty (not too far from the truth, but still mostly a joke). It was probably more like 16 or 17. I used to be extremely self-conscious about it. How couldn’t I be? No one wants their hairline to be very clearly receding before they have even made it out of their teenage years. I hadn’t even made it out of school yet. The self-consciousness was quite veiled and I think I mostly took the situation on the chin. There was no alternative – hats made me look stupid and I didn’t fancy maintaining a mohawk haircut. Various people had made the joke about my hairline looking like the McDonald’s M by the time I was about 21. It’s even more insulting as I truly dislike McDonald’s food. Every time I get convinced by someone to go, I end up with the same issue – I leave hungry yet feeling incredibly sick. The food is so terrible. The only thing on the menu worth considering is the McFlurry and they even rotate the flavours of that, meaning you find one you like and then they take it away. Perhaps I’m just bitter because of my hairline. At least no one makes that joke anymore (to my face); it’s probably receded too far for it to be funny anymore.

So I’m no stranger to hair loss. That being said, I am a stranger to the hair loss that I am currently experiencing. As I sat there in some shorts a few nights ago, I realised that there were incredibly smooth patches on the back of my legs. To my surprise, I started noticing them all over the top of my thighs too. My hair is quite light in colour so it isn’t very pronounced, but if you look closely you can see hair of all different lengths as you survey my legs. In some areas, it has completely disappeared, and in others it is just turning into stubble. I started noticing that a similar thing is happening to my arms too. Now I’ve noticed it, I can’t stop looking at how randomly it seems to have occurred. No rhyme or reason to where the hair has vanished and where it looks the same as it did before. As usual, I’m looking for a pattern that explains it – a way of understanding something that is probably just random. I do it about the cancer and now I’m doing it about the loss of hair.

It is almost vindicating to know that I have experienced some hair loss during chemotherapy. For the majority of people who have never experienced treatment, it is probably the most quotable symptom of it. I’m assuming if you surveyed a random 100 people and asked them what negative effect chemotherapy has on your body, they would say hair loss. It is part of the image conjured up in the media. A person with ghost-white skin and no hair, attached to a machine and hanging onto life by the skin of their teeth. I’m sure this is some people’s experience, and I don’t mean to downplay how awful it must be if it is. There’s another side to the story, though, and it is this side that dominates the wards I sit on during my treatment. It is mostly normal looking people, dressed in the same clothes they’d probably go to the shops in, trying to avoid eye contact, likely worried that it is considered prying under the circumstances. Sometimes you see someone who looks more ill and you feel sympathetic towards them – but they usually smile back if you catch their eye. Most people don’t want sympathy. They’re probably sick of the world looking at them as a wounded animal. People are much stronger than they appear. My dad says it about my mum. She is the most loving and sensitive woman I know, but I’ve seen her be incredibly strong. I remember being at the hospital with her visiting my grandad just before he died. He was asking where Jessie was (his late wife and my grandma), and kept thinking that he was in the bedroom of their house. “Is Jessie going to bring my tea up?” he asked over and over again. It was hard to be around; I can’t imagine how hard it was for my mum… but she had to leave the hospital that day, likely to make a meal for 6 ungrateful children, before tackling more of the endless washing pile that never got smaller. Life goes on. We all understand that, even if we don’t like it.

A few days ago I received a letter from The Job Centre stating that my last sick note ran out at the end of April. It informed me that until I get a new one from my GP, they cannot process my request for Employment and Support Allowance (ESA). To continue with the story, we need to cover some fairly boring informational stuff. Bear with me.

When you are on long term sick in the UK, the employer is obliged to pay you Statutory Sick Pay (SSA) for 28 weeks. Once this period is up, you have to apply for ESA directly with the government. The process is then managed by The Job Centre. You are requested to have regular meetings with a Careers Advisor. It is strange considering I am technically in full-time employment, but have too much cancer/chemotherapy to deal with to allow me to work. You do feel a little like you’re under investigation… but that’s because you are. There will be people who try and abuse the system, though, so it is necessary. The careers advisor I spoke to is a very lovely person who took away a lot of the feeling that I was doing something wrong, so that made up for any negativity I felt from the letters.

I contacted my oncology team and requested another sick note as soon as I read the letter. My original one was issued by King’s hospital when I was diagnosed with cancer. Other than this, I’ve never needed a sick note in my life so I’m not familiar with the process. They responded in the afternoon stating it is my GP’s responsibility to issue sick notes. Fine. I decided to just walk down to my GP as I had emailed two weeks ago about a few things but hadn’t heard anything back. I’m feeling pretty good right now so why not sort out some wonderful admin. Is there anything more sexy than a little bit of cancer admin? There definitely is – anything.

As I stood waiting in the queue to speak to the receptionist, a woman joined it behind me. To my surprise, I heard a voice say “Got toothache do you?” I turned and realised she was talking to me, before then realising that I was standing with my right arm folded across my stomach, and the other elbow resting on it, with my palm resting under my chin and hand across my cheek. I laughed and said “Nope… No… No.” I used to have a bit of wit about me but I’ve struggled more with social interaction since starting chemotherapy, I’m not sure why. She then said, “…because I was going to say that you’re in the wrong place.” She clearly didn’t want to waste a punchline that good. I couldn’t tell if it was a passive-aggressive way of trying to get one person closer to the reception or if she was trying to be friendly. I nodded and laughed a bit and then turned around. We didn’t talk again.

It took about 10 minutes before I was at the front of the queue. As I approached the desk, I explained that I was undergoing chemotherapy treatment at The Christie for pancreatic cancer and that I had an issue with my sick notes. The very lovely receptionist smiled and asked me to wait a minute whilst she speaks to her colleague, before popping her head into a back room. She then told me to go around the corner to resolve my issue, as it was considered ‘private’ – a very lovely gesture indeed. They resolved my issue quickly and I had my sick note about 5 minutes later. It was a great success.

As I was leaving the surgery, I saw the woman who made the joke about my tooth. I think she overheard that I had cancer and was on chemotherapy, as her demeanour was totally different towards me. She looked at me wide-eyed and gave me a half-smile that felt sympathetic. I smiled and told her to enjoy the rest of her day. She said, “take care”. I’ve perhaps created a story out of this in my head, but I’m not sure. I felt the sympathy, though. I understand the sympathy to an extent – I feel sympathy for anyone who tells me they are suffering from, or know someone who is suffering from cancer. It is especially so when they are particularly young or they have a particularly bad diagnosis. I guess I fall into the ‘particularly young’ category for some people. It made me think about what a ‘cancer patient’ really looks like. I’m constantly being told that I look great given what is going on, which is a lovely compliment to receive. I don’t always feel great, though. In fact, sometimes I feel absolutely horrific. And people seem to conflate looking good to how your battle with the cancer is going – something which will correlate to an extent but doesn’t hold weight in a lot of cases. I may have been running ultra marathons with cancer for over a year. That’s how long I was displaying symptoms of something, not understanding what it was. No one ever commented on how good I looked then!

The point is that cancer can impact any of us, and it isn’t easy to identify someone who has cancer simply by looking at them. We don’t walk around hooked up to a chemotherapy machine, holding a mop bucket in case we throw up at any time. I follow a lot of accounts on Twitter of people with a terminal diagnosis who run marathons, cycle one hundred mile races and push their bodies to extremes. Usually, they are raising money for charities like Children with Cancer and posting selfless messages of positivity and hope, which brings me to the final part of the post.

If you are in the UK, you have likely read the name Deborah James in the news over the past few days. She is the host of a podcast called You, Me and the Big C, a podcast where the hosts speak candidly about their experience with cancer. The founder of the podcast, Rachael Bland, died in 2018 after a 2 year battle with cancer, only 6 months after the podcast was started. Unfortunately, Deborah James has announced that she is now on hospice care and is preparing to die. She wrote the below on Twitter.

I tried to read her final column for The Sun, but I couldn’t get through it. I wish I could, and I will eventually, but it is too much for me to manage right now. The details of decline and descriptions of ill-health towards the end of a life ruined by cancer create too vivid a picture for me. I hate to say it because I feel selfish for not persevering through someone’s written experience of something that is actually happening to them right now. Me reading it is nothing compared to them dealing with it. My issue is that I still do not understand what the actual dying part of cancer is like. I’ve never really understood what is the final thing that kills you; I know that it will be different for different people, but I’ve often pondered with morbid curiosity over what the dying phase actually looks like. Not because I want to know, but because I am scared to know. Deborah has addressed these things too well in her writing, and I just can’t read it without feeling terrified to my core of it happening to me. Death isn’t something that scares me, but the process of getting there is hard to fathom. You find yourself hoping that when it happens to you, it is a quick decline for both you and your family. I wanted to pull out the following quotes from the article:

“I do not want to die – I can’t get my head around the idea that I will not see my kids’ weddings or see them grow up – that I will no longer be a part of life that I love so much. 

I am not brave – I am not dignified going towards my death – I am simply a scared girl who is doing something she has no choice in but I know I am grateful for the life that I have had.

What an incredibly humble and moving way to summarise the destructive nature of cancer, and how its victims are left to simply observe as they deteriorate, to the detriment of themselves and the loved ones around them. I read that she was running 5K’s every day recently, and now cannot walk. It makes me resent this image of cancer sufferers as people who cannot strive to live a normal life, keeping physically active and doing what they can to keep themselves feeling as well as they can under the circumstances. People seem surprised to learn that I am trying to run whilst on chemotherapy. Sometimes I think people believe it must mean that treatment is easy for me, or that my body is naturally set up to cope with it. This last month has been extremely hard for me on chemotherapy and I’ve struggled to do a lot. It showed me that things can change quickly, and the state of your health is never as out of your hands as it is with a cancer diagnosis. You feel impotent in the face of it, so strive to control the things you can – keeping yourself fit, spending your time doing things you enjoy and staying as positive as you can. Every second you spend feeling any other way is wasted because you’re more cognizant of how valuable those seconds are, and you want to spend them making a positive impression on the world. No one has done that more than ‘Bowel Babe’ Deborah James, who has raised millions of pounds for Cancer Research UK and used her platform to educate, support and humour the masses.

I wish I had a positive way to finish the post, but I’m struggling to muster anything of substance. Deborah’s beautiful words just remind me what a dark, insipid beast cancer is for taking such a wonderful person away from her family, friends and followers at such a young age. I hope her final weeks are spent full of love and support and wish her family well.

Whitby

The ‘C’ Word

English people are quite bad at recognising that their country of origin is very beautiful. I know this because I am an English person and I frequently undervalue the appeal of my homeland. When it comes to holidays, we usually favour taking advantage of cheap flights into Europe to get better guarantees of good weather (and usually cheaper alcohol too, depending on where you’re going). After all, the English have a terrible reputation to uphold overseas. We’ll be damned if any travelling Englishman tries to improve it by learning some of the local language or by not drinking 8 pints at the airport pre-7am flight. But navigating airports is a pain in the bottom, and I need to see more of the wonderful English seaside. I only made it to Dorset for the first time last year and I was absolutely stunned at how beautiful it is. So, I thought I’d try my hand at some domestic holidaying this weekend. That’s why Anna, Lucy and I booked a little Airbnb in Whitby, a picturesque English town situated on the Yorkshire coast in North England. It is really worth a visit.

I didn’t know a lot about Whitby before visiting it. To be honest, I still don’t know loads about it, but I certainly know more. There is an astounding demand for fish and chips. Usually, you cannot walk for 5 minutes in an English town without seeing another pub, which is true of Whitby too. The difference in Whitby is that the pub will have a huge banner outside it stating that they serve the best fish and chips in the country, whilst being sandwiched in-between two other places which also, somehow, serve the country’s best fish and chips. I’m not sure if there is a recorded statistic on how many individual chips are sold in Whitby per year, but I bet it exceeds the total number of ants estimated to exist in the world. And who gets to eat all of the chips that don’t make it into the stomachs of tourists? The fucking seagulls.

Before I start on this topic – yes, I know seagulls aren’t only in Whitby. I even know that the seagulls in Whitby aren’t the worst in the country… that award goes to the Brighton seagulls, who are absolute thugs. Take the worst animal on the planet and give them the diplomacy of a Londoner being told that they have to wait an entire FIVE minutes before the next tube will arrive, and the result is the scum which is a Brighton seagull. The audacity of these things is off the chart. I saw a Brighton seagull divebomb into a young girl’s portion of chips which were in her hand, knock them on the floor and then proceed to eat the chips as her entire family chased it around in circles. The family abandoned the operation when the rest of its gang all flew in to obtain some of the loot. The girl was off crying to the side by this point… I think she had lost her appetite.

I do have a particular bone to pick with the seagulls of Whitby, though. I’ve been woken up by seagulls every single day at 5am. I’m pretty sure no sentient being would make the noises these birds do at this time if they weren’t also aware of how INFURIATING it is. Waking up to songbirds is one of life’s greatest pleasures and I am lucky enough to experience it frequently at my parent’s house in Cheshire, where I currently live. They have a nice sized garden which contains a lot of bushes and bird feeders, the perfect combination for attracting birds. The nice kind of birds. Seagulls, however, seem to have learnt their morning call from someone who hasn’t stopped drinking for an entire year and has now forgotten how to communicate. In lieu of real words, they have resorted to simply making whatever noise they feel they can vocalise the loudest to disturb the most number of people, in hope that one of them understands what they are actually trying to say. “GAH… GAH… GAH,” they call to each other over their morning coffee (which they probably fished out of the ocean). I know that a neighbouring dog also hates the seagulls because it proceeds to bark incredibly loudly back at them all morning. I can only assume the owners of this dog are deaf because they make no attempt at stopping it from doing so. The dog is on my side, though, so I shouldn’t be getting annoyed at it. It’s the seagull’s fault, Dan. Remember that. Seagulls are the most obnoxious animals ON THIS PLANET. If I had been starved of food for an entire month and someone offered me a plate of seagull, I’d throw the meat straight into the ocean and proceed to eat the plate itself.

Despite being a walking zombie due to lack of sleep, I managed to pull my walking socks up and do a beautiful 7-mile walk along the coast on Saturday morning. We got the bus to a place called Robin Hood’s Bay and embarked on the walk back to Whitby. The weather started out a little cool, making us both panic that we had under-dressed as we got off the bus. That theory lasted about 30 minutes before we realised that we were absolutely boiling already and that it was only getting warmer. Anna tied her coat around her waist but I couldn’t bring myself to do it. It just looks so weird. I opted to carry mine for the best part of 5 miles.

Lucy absolutely loved it. For such a small dog, she really can walk a long way. I doubted that she would be able to see the walk through and suspected that we’d have to carry her some of the way. We didn’t! There were a few firsts along the way too; the first time she met a lamb up close, the first time she stepped onto a beach, and the first time that she saw the sea. She did not like any of them. At one point, we encountered a lamb which had managed to get through a fence and was on the walkway. It seemed quite distressed and (what I assume was) its family were on the other side, also panicking. They weren’t doing a good job of helping it resolve the issue. As we approached and decided we needed to assist, Lucy went into meltdown mode. She had no idea what it was, but she wanted Anna and I to know that she was not happy about it being there. Lucy has met sheep before, but they have always been far away or on the other side of the fence. I didn’t realise that she took confidence from fences separating her from other threatening animals – it actually makes me think that she’s smarter than I give her credit. I had to pick her up and turn away from the lamb to try and stop her barking and crying whilst Anna opened a metal fence and encouraged the lamb through. The lamb did so and then the entire herd ran as far away from us as possible. We like to think that we earnt ourselves some good karma from it. A couple walking slightly ahead of us totally ignored its plight.

Lucy On the Run – ft Terrible Australian Accents

The walk ended in Whitby. There are the remains of an abbey on a hill overlooking the town. It’s called Whitby Abbey, for some reason. Next to it is a brewery that serves pizza. We decided to call into it and have a pint and a pizza to celebrate. It had just turned 13:00 and we felt accomplished. The second we sat down, Lucy passed out and wouldn’t be stirred (other than when there was pizza on the table – you could get her heart to start beating again by waving food in front of her nose). It made for quite a cute sight and a few people came over to chat to us about her. She couldn’t have cared less and would only briefly open her eyes to give us ‘the stare’ if we were moving her too much or being too loud. The brewery is lovely – I’d really recommend doing the coastal walk and finishing in there. We didn’t go into the ruins of the abbey; It cost £10 to enter the site and we could see it from our table in the brewery anyway.

Another thing I’ve learnt about Whitby is that apparently, it has an association with Dracula. I haven’t read the book or seen any of the films which I assume exist, so I’ve only read what the relationship is about on Google. There are 199 steps up to the Abbey that he walks up in the novel, and they are now famous because of it. I didn’t count the steps myself but I’m willing to concede to what the legend says. There is Dracula merchandise in all of the gift shops and a museum called The Dracula Experience. People go Dracula mad in Whitby. Anna told me to strike a Dracula pose as we descended the stairs from the abbey. The one day that I didn’t wear my cape and fangs to go out walking – how frustrating. I didn’t manage the most convincing image and I’m pretty sure no one would ever guess I’m trying to be Dracula from what I am doing. If I’d just had chemotherapy it would have been better as the process seems to wipe any colour from my face for a day or two.

Dracula Dan Climbing the 199 Stairs

On Sunday we decided to drive to Newcastle as neither of us had ever been there. It’s another hour and a half north of Whitby. I wasn’t really sure what to expect. After spending the morning Googling ‘what to do in Newcastle’, I established that the main things were to walk the various bridges over the river and enjoy the quayside. Ok, not really, but that’s what someone suggested on a random forum when someone asked ‘what can I do with a few hours in Newcastle’. We decided to park South of the river and walk over one of the bridges, then find somewhere to eat.

As we made our way over The Tyne bridge, I suspected that we had over-anticipated just how good walking over a bridge could be. It wasn’t bad, it just wasn’t groundbreaking either. It is essentially a dual-carriageway with a pavement next to it but elevated from the ground. You did get a nice view down the river and into the city, but it wasn’t amazing. In Philadelphia, I used to regularly run over The Benjamin Franklin Bridge. That bridge was much higher, and pedestrians had their own separate walkway which went above the level of the traffic – a much cooler bridge experience. I always did my hill repeats on it.

As we approached the north side of the bridge, I noticed something laying on the ground. Lucy ran towards it with purpose so I assumed it was food. I pulled her back to inspect it closer. To my surprise, it was a used tampon. I didn’t see it on TripAdvisor, so I’m assuming it wasn’t a piece of shock art or a historical artefact. We took the executive decision to not let Lucy anywhere near it and proceeded to the quayside. Quite an introduction to the city. I’ve never seen Geordie Shore, but I assume it is a result of that show somehow.

We spent our few hours there walking around and getting a feel for the city. Neither of us ate breakfast, so we wanted to find a nice cafe quickly. The one we chose didn’t end up being very good. Hunger defeated logic. All of the food was overpriced and the quality was poor. I’m not going to name it as I’m not writing the blog to critique restaurants. Lucy seemed to enjoy herself, though. After incessantly crying because she was on the floor, I decided to pick her up and have her on my lap. She’s well behaved usually but she had been sitting in a car all morning, so I think she was a bit restless. We hadn’t walked around very much at this point. I was eating a cheese and tomato croissant when all of a sudden, Lucy lunged and ripped the top half of the croissant off and wolfed it down. The table next to us were in disbelief and couldn’t stop laughing. A woman on another table just looked horrified, but she looked that way before Lucy nicked the croissant; she didn’t seem too enamoured by the small amount of space inside, the pushy waiting staff or the large, overambitious menu options. Inside my mind I agreed with her, but I doubled down and ordered plenty of food just so I didn’t leave hungry AND disappointed. I had nothing but admiration for the move from Lucy. The croissant was quite average so it wasn’t a huge loss. I also wouldn’t usually order a filled croissant – why mess with something that is already perfect? I think Lucy wanted to teach me a lesson. Lesson learnt. We left feeling full but disappointed. The rest of our time was spent walking around parks and looking at some of the local sights. The only time we recorded anything was when we saw The Angel of the North from the motorway on the way home. It isn’t as big as I thought it’d be, but it was still cool.

Wow – The Angel of the North!

We got back to Whitby at about 17:00 and chilled out for an hour at the Airbnb. The sun was fully out now but it was still a bit cold. As it is our last night here, we wanted to go into the town for a while. We headed back out and went to a dog-friendly beach by Whitby harbour. We figured out how to make Lucy like beaches – show her that you can dig in the sand without consequence. Lucy is a big fan of digging. My dad, however, is not a fan of her digging. He is forever shouting at her for ruining the flower beds and digging up bulbs to chew on. Of course, knowing that she isn’t meant to do it only makes her enjoy it more, comme stealing croissants or trying to eat tampons off the street. Once Anna encouraged Lucy to dig and she realised it wouldn’t get her in trouble, she fell in love with the beach.

Lucy Finally Digging the Beach

So, I’m finishing this blog post off whilst sitting in the Airbnb on our final night here. My family got me a voucher for Airbnb my birthday – what a lovely and thoughtful present from them. We tried to book a few different weekends away but had to cancel, either because I felt too ill or because other medical issues got in the way. It is nice to post all of these pictures and videos and reflect on the past few days, knowing that I’ve successfully got out of my bubble. I like my bubble, but it is so beneficial to break out of it occasionally. We’ll spend a bit of time walking around the town tomorrow morning and give Lucy another run around on the beach, then we’ll make the two and a half-hour drive back to Cheshire before the evening rush hour hits. It’s been great, Whitby. I’m sure I’ll be seeing you again in the future.

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!

Fashion: The Mainstay of the Lifestyle Blog

The ‘C’ Word

Considering I have a blog which can be branded with the tag ‘lifestyle’, it was only a matter of time before I delved into the topic of fashion. I’ve been well aware that the primary motivation for most people following this blog is to hear my thoughts on fashion for a while now. You’re probably hoping I reveal some of my deepest darkest tips for dressing well. I’m sorry to disappoint, those secrets are being kept hushed, just like the mysterious Coca Cola recipe.

Fashion isn’t a topic I am well versed in. In fact, I would say it is a topic that I outwardly deplored for most of my life… ‘outwardly deplored’ being used to describe how bad my fashion sense was, and how it communicated to those who did have any fashion sense that I had none. I still don’t have a lot, but I am comfortable saying that I try to have some these days. Throughout this article, I am going to be using the word ‘fashion’ a lot, probably incorrectly to its actual definition. I’ve just Googled the word actually and got the following definition:

  1. A popular or the latest style of clothing, hair, decoration, or behaviour.

Reading this definition actually makes me feel quite uncomfortable because I absolutely don’t consider myself fashionable and I don’t really aim to be – especially if that means keeping up with any sort of trends. What I will say is that finding some sort of style that works for you and makes you feel good is important. It helps you to express yourself whilst giving you a better sense of self. I never used to take much of an interest in trying to find my own unique style as it just wasn’t something I saw as particularly important. The thing is that we all have to wear clothes because of stupid ‘society’, so we may as well take somewhat of an interest in doing it in a way that makes us feel confident and comfortable in ourselves. I’ve established a few techniques for finding new clothes and for dressing in a way that is more fashion-conscious, without trying very hard. I’ll try and throw in a few stories to make it interesting for people who have a fashion IQ far above mine, or just have no interest in the topic whatsoever.

For a lot of my late-teenage to early-adult life, my de facto ‘fashion’ (if that word can be applied here) choice was jeans and a band T-shirt. Now, I’m not trying to talk down on that look in any way, but I didn’t do it well. The band shirts were mainly small bands that no one had heard of which, again, isn’t necessarily a bad thing. I think the main issue was that it wasn’t about the shirt for me, I just wanted to support bands I liked and knew that merchandise was a good way to do this. So I didn’t really select the shirts for how they looked or fit, I did it for other reasons.

These days, I tend to donate money to bands I like through the Spotify ‘Make a Donation’ functionality. I should do it more really as I’m sure smaller bands really suffered from the Spotify revolution, and I certainly overindulge in Spotify. Through the use of playlists, related artists and song radios, I probably listen to at least 2 new albums every day, if not more. If Spotify didn’t exist, that would be impossible to sustain. Anyway, I digress. Stay focused Dan, you’re talking fashion, not music.

When I started working full time, I was forced to think about my fashion sense a little more. Luckily there’s a playbook for interchangeable office worker #174749292748392173 – shirt, trousers, shoes. It was easy. Occasionally I’d even wear a suit. “You look nice today,” someone might comment in the office. I’d smile and say “Thanks. I have a meeting today,” trying to explain why I was dressed up more than usual, feeling uncomfortable that they had noticed. It’s interesting stuff, I know. That bought me a few more years of not trying to improve my fashion sense whatsoever. For work I wear my work clothes, at home I wear my home clothes. Easy. The two worlds never to meet, separated into different closets at home.

Eventually, this started to annoy me a little bit. I also run a lot, so I would find myself buying clothes for working out, clothes for work and clothes that I wear outside of work. As someone who didn’t have a lot of interest in buying clothes, this was quite an undertaking. Running/cycling clothes are actually really expensive too, especially if you favour clothes made out of recycled materials. For example, Rockay are an amazing brand for exercise gear and they make all of their clothes out of recycled plastic from the ocean, but they’re quite expensive. I don’t mind spending a good amount on running clothes because I use them a lot, and I’ve used Rockay for a while now so I know that they last well. It doesn’t mean that everyone wants to spend £100 on running shorts, though. Throw in a few cycling jersey, the endless amount of shoes you need to run, and the energy gels (which cost a fortune), and you realise that you’re choosing between these things or buying a house before the age of 50.

This embodies the issue with buying clothes – you have to make decisions around how much effort and money you are willing to sacrifice in pursuit of your style, whilst also filtering those decisions through your ‘moral’ compass too. For me, I don’t want to buy loads of new, cheap clothes that aren’t made to last very long and will get ruined easily. I also don’t want to spend loads of money on something just because it has a certain brand attached to it, although I don’t mind spending more on brands I know fit me well and are good quality. I want my clothes to be functional, fit well and sometimes be a little different. I’m willing to spend more on them if they meet these objectives. Some of the functional brands I think are worth spending more money on are Fjallraven and Patagonia. Columbia are also good and are more affordable than those brands. It is a huge bonus if a brand are sustainable in some way too. There seem to be more brands using sustainable and organic cotton these days, such as Pact. I haven’t bought anything from them yet but my mum seems to be very positive about them.

Anyway, I felt less willing to spend a lot of money on work shirts. I used to do the classic Charles Tyrwhitt shop where you get 4 shirts for £100 and would resent every one of them. They weren’t that bad, I just didn’t feel like I was buying something because I wanted it, it was because I had to have it. That’s a bit of a shame when you’re spending your money on them and wearing those clothes more than the rest of your wardrobe. It works, though, and I know this is how a lot of people who have an office job dress.

I started trying to buy more clothes which I could wear both casually and to work. This meant that I had more money available to spend, as I wasn’t splitting up my budget into “work” and “casual” so much. Some brands, such as Reiss, Percival and Cos do a good job of making clothes which can be worn in either contexts and are really comfortable. I always disliked wearing the standard work shirts because they feel very rigid and uncomfortable. I’ve spoken before on the blog about my strange reaction to being too hot. It effects me far more than it should. If I am too warm, I sit there and focus on how uncomfortable I am. Lucky for me, I have mostly worked in air-conditoned offices and it hasn’t been too much of a problem. When I was working in Philadelphia, there was a day where the temperature got near to 40 degrees. We were eating lunch outside on some benches and my phone was on the table in front of me. An alert popped up on the screen telling me that my phone was overheating. It turned off. I felt jealous of it, managing to switch off and get away from the heat. I ended up running back into the air conditioned office and splashing water on myself in the bathroom, before sitting with one-too-many buttons open on my shirt. We were based in our client’s office at the time so I was playing a risque game dressing that provocatively.

There are also tools around that can be useful in improving your style too. I downloaded an app on my phone called Thread. When you first signup, you answer a load of questions about your sizing, brands that you like, what you primarily buy clothes etc, then it recommends clothes to you. It’s useful because it recommends things to me that I may not have found otherwise, and forces me to consider different styles of clothing which I wouldn’t otherwise consider. I have to admit, I seldom buy the item from Thread though. Usually, I’ll find something I like on there and then look elsewhere to see where it is cheapest. It seems that Thread have to request the clothes to be sent to them, then they box them up and send them to you; a process which seems totally pointless if you can just go directly to the retailer. The argument to not do this is that you aren’t giving Thread the financial support they need to keep providing the service… another thing for me to feel guilty about in life, I guess.

Once you find a few brands you particularly like, you can also use sites like Ebay to find new clothes. I like doing this as it is more sustainable, as well as being cheaper than buying things new. The downside is that sellers rarely accept returns, so you have to be confident that you understand the sizing if you’re going to be buying them through these sites. There’s a lot of good stuff on there, though, especially if the brands you like to buy are well established ones. If you find smaller brands you like, there are usually limited options on sites like these that match you sizing. I seem to be the quintessential size in most brands so it is quite fruitful for me, but I appreciate that it isn’t the case for everyone. I’m also cautious of the seller’s rating when buying clothes, or when buying anything really. When Anna and I were buying furniture for our apartment we were scammed by a seller on Ebay. Luckily we got the money back, but I’ve paid close attention to the ratings ever since.

My best friend Luke used to find random clothes on Ebay constantly. I’ve seen him wearing a Frosty Jacks cider hat, a Budweiser hat and a retro international football shirt…for Ghana. To make it even more random, the Ghana shirt was the goalkeeper jersey, not even the standard player one. So Ebay really does have something for everyone.

That is pretty much everything I have to say on fashion, you’ll be glad to know. Hopefully this will propel me to new heights in my pursuit of being the number 1 lifestyle blog on planet earth. Soon I’ll have my own show rivalling Sex and the City. Perhaps I’ll call it Cancer and the Countryside if I’m still living at my parents house when it airs… c’mon, I had to mention cancer once.

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.

Escapism

The ‘C’ Word

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.