Under Surveillance – The Final Cycle

The Chemotherapy Diaries

I draw a line in my life

Singing, “this is the new way I behave now”

One of my favourite writers is George Orwell. For years, I only really knew of his novel 1984 and the novella Animal Farm, and I wasn’t too fussed about either. It was only when I Googled for pieces of work similar to Bukowski’s book ‘Ham on Rye’ that I found out that Orwell also wrote a few non-fictional pieces. The best rated of these was ‘Down and Out in Paris and London’, a book written about Orwell’s time spent living in extreme poverty in Paris and London. He painted such a vivid picture of the exceptionally poor conditions these people lived in; his writing exuded empathy for their struggle, and you could always sense his appreciation for them in the way he wrote. The novel presents a cast of characters, very few of which have anything to be positive about in life. They are all living day to day, barely making enough money to put a roof over their heads, and frequently having to eat nothing at all, or settling for stale bread which they managed to negotiate the price of at the end of the selling day. I read the whole novel in a single day, and couldn’t stop thinking about it for weeks. Despite this being a favourite book of mine, I never got around to reading another one of his non-fictional pieces titled ‘The Road to Wigan Pier’, which has been on my radar for years.

A few days ago, as I sat absently watching TV, my phone vibrated in my pocket. I unlocked it to see that Audible had charged my account for a new token. If you aren’t aware of how Audible works, you essentially pay a monthly subscription fee which gives you a single token each month, which can be used to purchase any audiobook you like. If you wish to buy a book without a token, they are usually significantly more expensive. The scheme essentially encourages you to purchase a single item a month using your token, and then spend that month listening to it. These tokens build if you do not use them, and I had banked up a total of 6 during my time receiving treatment for cancer, as I had stopped using the service entirely. It would have actually been a great time for me to use it far more, but I used to listen to things primarily when walking around London, and I hadn’t been doing a lot of that over the past year, so the habit was broken, and it didn’t seem to be coming back. I’d subsequently decided to pause my account, so I wasn’t amassing enough tokens to purchase the entirety of Stephen King’s back catalogue.

Audible encouraged me to pause it for a set amount of time, though, as opposed to cancelling it, as that would lose me my tokens, and that set time had clearly come to an end. I decided it was time to start using some of those tokens, and I immediately purchased ‘The Road to Wigan Pier’. I may as well tick it off my incredibly dull bucket list… Some people want to skydive or visit one of the great wonders of the world, I want to sit in my bed and listen to someone reading back to me the depressing conditions that coal workers resided in during wartime Britain. Each to their own, I guess.

A few nights ago, I couldn’t sleep. It was about 3:30am; my abdomen was hurting, and I was concerned that something was going wrong with my cancer. At this point, I could stub my toe and 5 minutes later worry that my toe hurting may be linked to the cancer spreading. Can you get cancer in the toe? Probably not… If you can’t, I’ll likely be patient zero of the toe cancer world.

Laying in bed, I decided to cheer myself up by listening to ‘The Road to Wigan Pier’. The first few chapters are dominated by Orwell describing the brutal conditions of the coal mines. I sat with my headphones in, looking out of a small gap in the curtains. Through the break, I could directly see a streetlight on the road outside of my parent’s house. Rain was pouring down. I tried to follow single droplets as they made their way down the window pane, but they were quickly lost in the onslaught. Orwell was describing how coal workers have to walk anywhere from 1 to 5 miles underground to get to the coal face. The temperature in the shaft is unbearable, and the miners have to traverse a complex network, most of which they can barely even crouch in due to the size of the opening. That entire journey doesn’t even count towards their working hours for the day, and once they reach the coal face, they spend 7 hours on their knees, shovelling heavy coal onto a conveyer belt, before making their way back through the tight tunnel system, coal dust heavy in the air, before being pulled back up to the surface on the hoisted platform. I wondered if I had any right to complain about anything going on in my life compared to this world Orwell was painting. It may have given me some helpful perspective on my life, but it wasn’t helping me fall back to sleep. I turned it off and listened to some mindless podcast instead, which allowed me to fall back asleep in little time.

I’ve just started cycle 3, the final cycle, of the mop-up chemotherapy. Cycle 2 was a stagger – with 2 delays in treatment due to my liver functioning being too poor to proceed. The resolution to the issue seems to be the oncologists approving a new ‘permissible’ reading for the liver functioning tests, meaning that my liver can be slightly more fucked than it could before, without it triggering a delay in treatment. Although I am happy that delays are less likely to occur in cycle 3 due to this, I am sceptical.

Much of cycle 2 was spent with me feeling incredibly ill, spectacularly tired and constantly in fear of the next dose of chemotherapy tablets that I had to take that day. The dosage is 3 tablets, twice a day, and every time I have to take them, I throw them all back at once and quickly down some water to get rid of them. They almost make me choke every time; not because I struggle to physically get them down my throat, but because I can’t help but view them as evil little bastards that are going to make me feel more ill, more tired and more angry that this is really considered the best way to treat any illness in the modern world. The treatment might just save my life, though, and I do need to remind myself of that fact sometimes.

The final delay in cycle 2 meant that I would still be in the height of the chemotherapy treatment on Christmas day, whereas this was supposed to be during my week off between cycles. I was quite gutted about this, as Christmas is my favourite time of year. I wanted to feel my best around this period so I could see friends, eat too much and allow myself to decompress a little after a tough year. It wasn’t to be, though. I still managed to do most of those things, but there were a few dodgy periods.

A few days after Christmas, myself and 19 of my friends went to a local restaurant for a big meal. I’d really been looking forward to the event for weeks. We don’t all get together very often, so it felt novel and exciting. During the day, though, I’d felt very anxious and not myself. They are feelings that I am becoming better acquainted with these days, as I struggle to wrestle with the post-surgery world I inhabit. I’m constantly fighting with my volatile blood sugar levels due to having no pancreas, and the mop-up chemotherapy gives me more headaches in a single day than I have experienced in the rest of my life. They make it especially hard to get out of bed in the morning, and I frequently find myself unable to move for 2+ hours. Mornings used to be my favourite time of day; now they pass me by without barely acknowledging me.

For the first hour or so, I was quite enjoying the meal, but at some point, a trigger switched in my head without me realising. As I sat there, I looked around me at all the people I know and love, enjoying themselves, laughing, drinking and chatting away. I felt like a ghost; like there was a void around me separating me from them. I tried to shake it off and engage, but I couldn’t. All of a sudden, I felt like I was suffocating. I told the group that I wasn’t feeling too well, and that I needed to leave. After a few laboured goodbyes, I made my way out of the restaurant. The second the door closed behind me, I burst into tears. It surprised me as much as it surprised the man walking towards me on the street. He looked at me like I was crazy – he probably thought I was drunk.

I took a left turn to get off the main road and made my way back to my parent’s house via the quiet route, where people were less likely to see me and judge me. In the park next to their house, I sat on a wet bench and pushed my palms into my eyes, hoping to seal my tear ducts and stop whatever was going on. The episode seemed to be passing, so I made my way home. As soon as I walked into the front room with my parents, I tried to forget about what just happened, but couldn’t open my mouth without reverting straight back to that state. I burst out crying again, struggling to breathe; they asked me what was wrong, but I couldn’t muster an excuse. I still can’t. The whole thing was weird. “You’ve been through so much,” they both said to me in a comforting tone.

I tried to process what had brought it all on, but I couldn’t pinpoint anything. I just felt sad. More sad than I remembered feeling at any point during the whole 6 months of initial chemotherapy. The experience was annoying me – I felt angry at myself for not managing to be more positive under such good circumstances. My end-of-chemotherapy scan is at the end of January; if that comes back as clear, I will be classed as ‘cancer-free’ for the first time since my diagnosis. It should be so positive, but I now find myself looming over what that means. All of the statistics around pancreatic cancer are so depressing; you feel like the oncology staff are all treating you like a ticking timebomb who they expect will have a reoccurrence any day. It doesn’t feel like it is ‘if’, it feels like it is ‘when’. During a routine check-up call with one of my oncology team, I asked if I was technically in remission if that final scan shows no cancer.

“No, you’ll be classed as Under Surveillance,” she said. I was probably asking for the wrong reasons. I wanted to hear a medical professional tell me that I’d be getting that big green light. Perhaps they’d even ask if I want to ring a bell. Such celebrations don’t seem to be granted to those with pancreatic cancer. We’re put ‘Under Surveillance’; an Orwellian phrase with sinister undertones. Sometimes, you just want someone to buy into your bullshit. Is it so hard to grant me a single ounce of hope? I messaged Ali Stunt, the CEO of Pancreatic Cancer Action, explaining that I couldn’t find any definitions of ‘Under Surveillance’ on any cancer websites and that I just wanted to know if I could tell people that I was technically in remission if that scan is clear.

“You will be technically in remission, but they’ll be keeping a close eye on you,” she said. “They don’t like using the term ‘remission’.” She’s a wonderful person to be able to speak to about these things; she has been through it all. She understands how hard it can be.

Last Tuesday, I had my first infusion of cycle 3. As I waited in the chair for the chemotherapy nurse to come over and start my treatment, I had my head in my hands. The smell of the chemotherapy ward had made me gag as I walked in, not because it is bad per se, I just associate it with all of the sickness and hurt that I am feeling at the minute. Just being there makes my head spin.

The nurse came over and asked me if I was Ok. After I unloaded on her, she responded, “my sister died of pancreatic cancer about 10 years ago. They could barely treat it at all then.” She turned the iPad that she had in her hand around to show me the screen. At the top was my name and date of birth. Next to this was a section titled something like ‘Treatment Objective’, which was defined as ‘total eradictaion of the cancer.’

“They still see the objective of your treatment as killing all of the cancer, and giving you a normal life again,” she said as she pointed to the screen. It was quite awe inspiring; I wondered if it was a tactic she had adopted before. It’s a really powerful one. That did make me feel better, and I’ve reminded myself of the moment a few times since it happened.

I’m back in treatment on Tuesday for session 2, assuming my liver functioning doesn’t disrupt the schedule, like it did during sessions 2 and 3 of the last cycle. My challenge to myself is to try and get some of that positivity back that I used to have during my first bout of chemotherapy, and stop focusing on the negative. I’m not working down a dusty mine shaft, and my treatment objective is still to eradicate the cancer. There is plenty to be grateful for.

I hope that everyone reading this had a lovely Christmas and New Year, and that you are dealing with the January blues as best you can. It will hopefully be the month that I am told that I have no signs of cancer. What a way to welcome 2023 that would be!

Merry Christmas and Thank You!

And another year slips by in what feels like the blink of an eye…

This Christmas is feeling a little different for me in a few ways. Usually, I would have spent Christmas Eve having a few more drinks than the average night with my family and friends. In past years this has resulted in me struggling to eat my Christmas Dinner or, in particularly bad years, stopping me from enjoying a single second of Christmas Day. I can’t say that I feel disappointed about this change. I still had friends over yesterday though, and they had some drinks with my family. I just enjoyed the company, and they are always great company!

Finch waited until everyone was there before walking into the room with 2 wrapped presents and a card. Everyone was smiling and I was trying to figure out what sort of smile it was. Were they happy because they knew the presents were that good? Have they done something else that I was going to struggle to accept? Or were those smiles in fact smirks? Is this going to be at my expense? I was told to unwrap the presents in the order they were handed to me, including the card in the middle.

The first present was a book. ‘Everybody Writes’ by Ann Handley, a book about improving your writing. “So the first present was incredibly thoughtful,” I thought to myself. I read the card next – “To Dan and Anna. We have put something together which will hopefully help put a smile on your faces if future dates/appointments begin to become a little overwhelming”. My interest was well and truly peaked, but it seemed another undeniably thoughtful present based on the message. I unwrapped the last present and found it was a calendar with the picture from the surprise engagement meal on it; I used this picture in my Friends & Family post. What I didn’t know at the time was that this picture was a ploy. It was a façade placed there only to naively draw me in. What followed was me flipping page by page through the calendar to various levels of laughter, surprise and a peppering of disgust. Seeing as they gave me this calendar to hang in my house, I don’t think they will have a problem with me posting it here. Flick through at your own risk, there’s some disturbing content to say the least. It really is undeniably thoughtful though, and it will definitely put a smile on my face no matter what appointments I am having to mark inside it.

I also wanted to add a couple of honourable mentions. Firstly, to Lucy Giannasi for making me the amazing ‘Ebb and Flow’ card. I love it so much and it is so beautifully done! Next, to the group of friends that are self-named ‘The Turks’. I met Dan Sayek at Arcadis when I used to work there, and he’s been a very close friend ever since. Lucky for me, Dan Sayek comes with a whole catalogue of other friends that he knows from Turkey. They all live in London and are amazingly intelligent, thoughtful and interesting people. Not only have they made the 3 hour journey from London to visit me recently, but they then sent a Christmas Hamper to Anna and I to say thank you. What they were thanking me for I am not sure, all I did was cook them some spaghetti and let them look after my dog. I am so grateful for them and all the support that they are providing to me.

Another change this year is that my brother Greg won’t be here as he failed a PCR test. The labs were struggling to meet demand with PCR results this week it seemed, and it took 5 days for him to receive his. He had packed up the car with his stuff and was ready to leave Manchester as he received the positive result via text. By this point, he was convinced that the minor symptoms he had experienced the weekend before were due to the booster jab. He had done 2 hardcore cycling sessions that week since experiencing the symptoms (for those of you who know him, you will know he doesn’t do easy fitness sessions) and neither of them phased him. He was pretty sure he couldn’t do this with covid, but he did also test positive for Covid a few days after competing in the Bolton Iron Man last year; we should have known better really. Apparently us Godley’s like completing challenging events with unknown health problems – I did my last ultra marathon with cancer and Greg completed an Iron Man with covid. Luckily, his wonderful girlfriend Kate is staying with him in Manchester, so I hope they have a lovely day together and I look forward to seeing them soon.

The biggest change for me though is my diagnosis. What is strange is that Christmas was one of the first things that played on my mind when wrestling with the idea of having cancer. “I wonder how many Christmases I have left,” I sat pondering at 4am in my hospital bed one night. It really bothered me. I wondered if I would be able to enjoy any single one of them, or if the pressure I’d put on myself to enjoy them to the fullest would make the whole thing overwhelming.

I am now in a completely different headspace to then. You cannot process news like that in a week. You can’t even expect yourself to process it in a month, or 6 months, or even a year. Everyone is going to be different, and what ‘processing the news’ means for you may be very different to what it means for me. It is also influenced by the people around you, including the doctors you have. My processing came in waves, across 2 diagnoses of very different severity and with a range of differing attitudes of different doctors and nurses. It was only when I got to The Christie in Manchester that I felt like a set of doctors truly spoke to me positively about the situation, and that made a huge difference for me. Until this point, I was still processing news that felt to me was almost certainly a death sentence, something which was taking me a while and was difficult.

Another thing worth mentioning is that I have started to use Twitter to follow others experiencing cancer. Those of you who know me likely know that I have been very anti social media for a long time (Strava doesn’t count as social media – don’t even try it). For me, I realised that social media gave me a false reality that negatively affected my relationships. It was a means of feeling like I had a lot of friends and that I was involved in their lives, but actually I was passively learning about the ongoings of their life with little effort or engagement from either of us. As a result, I deleted all of my personal social media accounts and decided that any relationships I have from now on, I must make an effort to sustain. It felt good, and I have stood by that stance for 6 years. Now that I have a Twitter for the blog however, I have started seeing some different positives to social media. Twitter is helping me find people experiencing similar things to me, which is wonderfully therapeutic and encouraging. I opened the Twitter app 2 days ago to find the following tweet at the top of my feed.

The treatment plan she speaks of here is the exact same treatment plan that I am currently undergoing. Folfirinox is the same chemotherapy type that I am on, 12 sessions (2 cycles of 6 sessions) is the current plan and the aim of that chemotherapy is to allow surgeons to perform the Whipple, which is the type of surgery required to remove the tumour. I was suddenly flooded with so much positive emotion. Primarily for this woman who I did not know, but that I knew was sitting somewhere in the world right at that moment, experiencing such an incredible feat. I felt so incredibly happy for her. But it also showed me that treatment plans work and, specifically, my treatment plan has worked for someone. It is easy to say that this should have been obvious to me, but it felt different to see a random stranger write the details of the very same treatment plan as me, within a message stating that she had beat the cancer. What an amazing feeling, and it’s another example of someone sharing their message and having a profound effect on the world around them. I responded to her Tweet, and she sent me a lovely message of positivity and strength.

It is on this positive note that I will sign-off the post for today. Thank you so much for reading my blog, it means the world to me. It feels like I have been doing it for so much longer than I have, and I keep reminding myself that it is new to me every time I get cold feet about a post or feel self-conscious about things that I am writing. I’m learning a lot about writing and about myself, and it is when I am learning that I am most motivated in life, so it is helping me tremendously with my diagnosis. I hope that you have a lovely Christmas day and spend it with whoever is closest to you, exchanging gifts and eating far too much food.

Love, Dan x

The 7 Days of Chemo

The Chemotherapy Diaries

The last Chemotherapy Diaries post was signed off stating that I have 2 weeks of suffering between chemotherapy sessions. I have a confession to make. It is more like 7 days of suffering, followed by 7 days of minor suffering. This doesn’t roll off the tongue quite as well though, so forgive me for being melodramatic. Today we’ll walk through some of the weird and wonderful symptoms of that first 7 days, based on my experience so far.

I’ve had 2 sessions of chemotherapy to date, my first on November 27th and again on December 11th. As my sessions are every 2 weeks on the Saturday, you may notice if you have a particularly impressive mind that my next session was due to be on Christmas Day. I had braced myself for this and was thinking of ways I could make it feel special. “I could wear a Santa hat,” I thought, realising that cancer has turned me into the most boring person on the planet. It needed to be something that would make it feel like Christmas at home, like drinking a White Russian.

My family has a tradition of drinking White Russians on Christmas Day. I’m not sure if this is a traditional drink to have at Christmas, but the drink is predominantly white in colour which is the second most Christmassy colour after red. Even more confusingly, I believe the tradition was started by my sister Josie who is a vegan. If you aren’t spotting why that is confusing, then you probably don’t know that a White Russian is a cocktail mainly consisting of cow’s milk. Her husband has accused her of downing milk in the kitchen at night when no one is awake: I can see where this theory may have come from.

I received the appointment card for chemotherapy session #3 and checked it – ‘Monday 27th December’. Well, there goes my opportunity to wear silly hats and sneak alcoholic drinks that I don’t want to drink onto the ward. I have started to bake things for the nurses on the ward though. For the first session I was too nervous to do anything but show up, but for the second session of chemotherapy I baked the nurses brownies. My nurse paraded them around the ward showing all the other nurses what they had to look forward to. I then received a steady stream of visits from them one by one accusing me of buying them from a shop because they were so nice and thanking me. Baking and blogging, I’m currently fluking competence at both. Maybe I’ll make them a Yule Log for the next session. I made some Belgian Buns that I was quite happy with so I am posting a picture of them. The bake isn’t particularly even and I don’t think I’d be getting a Hollywood handshake, but I’d like to think he’d give me a sympathetic smile or something.

As I’ve only had 2 experiences of the fateful 7 days after chemotherapy treatment, I am still learning about many of the side effects of it on my body. Despite my first actual treatment day being easier than my second, the following 7 days were considerably harder the second time. I’m hoping this trend isn’t going to continue as by session 6 (the final session) I will be unable to crack a single joke about any of it.

The symptoms that the doctors warned me of most, and that I already mentioned in chapter 1, is an adverse reaction from your body to changes in temperature. This manifests in various ways depending on the part of the body in question. For example, if my throat gets cold because I have gone outside without a scarf on, it will swell, and my breathing will become coarse. I start to sound like an excited dog on the end of the leash that seems to get a kick out of being strangled. My voice also sounds like I’ve smoked 20 cigarettes that morning after a heavy night on the town. You also cannot eat anything from the freezer, must avoid cold drinks and ice is your enemy. This was particularly upsetting to me. When I was experiencing a lot of abdominal pain, my diet consisted primarily of Orange flavoured Calippos. If you don’t know what a Calippo is, they are a delicious brand of ice lolly that probably have a higher amount of sugar in them than water. Part of my daily routine was to go to the corner shop and buy 3 during the not-so-warm months of October and November. The shop owner used to give me these strange looks that I didn’t even see him give to the alcoholics buying extra strong lager at 7am on a Monday.

I previously mentioned about the pins and needles in my hands in the first blog. This is another reaction to the cold. For the first 7 days after a treatment day, my hands are extremely sensitive. For example, I was cutting some chicken to give to my dog Lucy for her dinner one day. Upon touching the chicken, my fingers immediately cramped so badly that I couldn’t move them at all. I stood looking at my hand in utter disgust before running it under hot water for a minute or so, which finally restored some movement. Again, cold water is your enemy. Avoid at all costs. It will take away the movement in your hands and leave you with pins and needles so bad that the name is far too meek to adequately describe it: swords and sadness is a better name for this issue.

Gloves are an absolute essential, even when driving. The steering wheel is too cold in December to touch with chemotherapy hands, so I must dress like a chauffeur if I need to go out in the car. I don’t attempt driving until the second week of treatment usually, but this symptom seems to hang around more than others.

The worst symptom for me is the sheer tiredness. It is like nothing I can describe. You don’t just feel like you need a lot of sleep, it leaves you feeling utterly dissociated from the world around you. I have moments where I suddenly realise that I am participating in a conversation with someone, but I am doing so entirely on autopilot. My mind just cannot focus. I start feeling like I am floating through my day, falling asleep regularly and barely being cognisant when I’m awake. And when I do sleep, it is such a deep and unsatisfying thing. I tried to describe it to my brother as feeling like you’re having 3 concurrent dreams at once, but you don’t know what is happening in any of them and cannot even divide them from reality because you usually aren’t in your bed and didn’t plan on falling asleep. He pointed out that it sounded like I was describing the levels of sleep from the movie Inception. Fairly accurate, I guess.

A newer symptom is the chronic back pain. I’ve said it before and I’ll say it again, I’m not a medical professional and this is a very colloquial description of the problem. One of the joys of chemotherapy is that it hammers your white blood cells, leaving you extremely vulnerable to infection and diseases. To counter this, for 5 days after the chemotherapy treatment finishes, you must inject yourself in the stomach once a day. The injection forces your bones to create more white blood cells. Quite amazing really, except the well documented issue that this causes: body aches that feel like someone woke you up that morning by driving a train into your bed.

The pain I have started to get in my back is truly unbearable. The wonderful Anna has had to dedicate blood, sweat and tears to attacking my back with a massage gun at 2am, whilst our puppy Lucy watches in utter bewilderment from her bed on the floor. She must have no idea what’s going on. I called the chemotherapy hotline about this pain on Saturday. To my amazement, they told me to use the painkiller liquid I was issued to full capacity if that is what it takes to kill the pain. This liquid was given to me when I was experiencing a lot of abdominal pain during the night. It was issued alongside a stark warning that it is extremely strong. I can attest to this, and the few times I’ve had to take it I have sat wondering when it’ll kick in for about 3 minutes, before going into an alleviated state of euphoria which I usually wake up from 2 hours later having no idea what just happened. It’s like injecting yourself with absinth. Next cycle, I’m going to be hitting that bottle like it owes me money.

Finally, the jaw pain. Again, I have mentioned this briefly in the first post. It is the mystical symptom that is undocumented but apparently completely normal. When I first put food in my mouth, I get shooting pains throughout my jaw which are so painful I must sit with my head in my hands for about 10 seconds, teeth gritted and palm on forehead. The frustrating thing is that the pain is only in the exact part of my mouth where the food is; so, if I do not try and chew my food with all areas of my mouth straight away, I get the same pain repeatedly as food makes its way around my mouth. This symptom is the one that catches me off guard the most, and I find myself in the middle of a routine conversation with someone in my family whilst I eat my breakfast, only to unexpectedly flinch, utter every expletive under the sun, then put my head in my hands and moan for a few seconds. It’s quite the ride for my family. Writing this has also made me realise how repulsive it is to describe chewing food, so apologies for that.

These have been what I consider to be the most interesting of the symptoms. There are other, more predictable symptoms, such as nausea and an occasional aversion to food. But they are largely manageable with the drugs issued to you. Hair loss is a side-effect associated with my chemotherapy, but it isn’t guaranteed like it is with other types. I think most people who see me these days expect me to show up with even less hair than I already have, but my small amount of hair seems to be staying put for now.

After the first 7 days after treatment, I generally start to feel better. Most of these symptoms remain to some extent, but I can get out of bed and move around the house freely. I even manage to get out and see some friends, which is much needed after the stressful symptom-heavy week. It is to be seen if any of these symptoms worsen the more chemotherapy sessions I attend. Apparently, it is quite common to have a really hard treatment towards the end of the cycle, usually around the 5th session. Although I don’t want this to happen, it may make for some good material for the series. Time will tell.