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!