I’ve drafted most of a post to go through the scan results in more detail, but I’ll summarise by saying they were all clear, and there are still no signs of active disease. I’ll finish that post over the next few days and upload it separately, but it felt wrong not to communicate those good results up front rather than leave them on a cliffhanger as if my life is a Netflix drama. Today’s post is, unfortunately, one written in sombre tones.
Initially, I had planned to write a post in my usual tone where I flippantly talk about delayed hospital appointments, the trials of diabetes and how my most recent scan results were unconventional. Then, I stumbled across something on LinkedIn that made me rethink the post.
I’ve only posted on my LinkedIn profile once. It was around 2 years ago and was a post about how fighting cancer also impacts your career. I can’t remember the motivation for writing the post on social media, especially on LinkedIn, as it is not something I would usually do. Probably because I had a lot of colleagues over the years who I considered friends but who I don’t speak to anymore and who I thought would be interested to know what was going on with me. This was also within the first few months of being diagnosed, and when the blog was relatively new, so it was all very interesting to me. In the post, I added a link to the blog so everyone could go and read about my story there, something which is a little embarrassing to think about now due to how personal this blog has been at times, but oh well.
The post got a reasonable reaction – 154 thumbs up and 34 comments. It was not bad for my first venture into LinkedIn posting. But my career as a LinkedIn contributor was short-lived, and the post remains my only one on the platform. I’m not too sad about that, though. I’ve got a consistently inconsistent record with social media; just look at the blog’s barren wasteland of a Twitter page if you need proof.
One of the people who responded to my cancer post on LinkedIn was a man who worked for BrewDog. To my surprise, he had also been diagnosed with advanced-stage pancreatic cancer, with a similar-sounding situation. He was undergoing chemotherapy at the same time I was. His name was Dan Bolton.
We were messaging on LinkedIn at first and then on Twitter. He would message me after reading one of my posts and offer up his own feelings and thoughts. It was always obvious that he was a nice person – he would focus on a relatively minor part of what I had written and ask me how it had gone or whether I was feeling better after it. He would also update me on what was happening in his life – he always seemed to be on holiday with his family, which sounded like a lovely way to spend the off days between treatment cycles.
On the day before I was due to go into surgery, he sent me a message on Twitter telling me to keep fighting the good fight and that he looked forward to hearing about how well it had gone afterwards. It went well, and I told him I hoped it offered him some hope a couple of months after the surgery date. It had taken me much longer to recover than I thought, and the message slipped under my radar for a while.
He told me that he’d experienced some difficulties with his treatment. They were starting him on a new type of chemotherapy to see if it was more effective, and he was hopeful that it would improve things. That was the last I heard from him – around August 2022. Whenever I saw the BrewDog logo outside of a pub or saw the cans of their larger being sold in a store, I’d think about him, but I never messaged him. Life just gets in the way – the same way it seems to get in the way of me writing for this blog.
To my surprise, I saw a post on LinkedIn a few days ago from his account. I’ve copied the first paragraph from the post below, but I’ll also add a link:
It is with very heavy hearts that on Friday we will honour the most amazing husband, father, son, brother,and friend as Dan sadly passed away on the 24th January 2024.
I felt many emotions reading this, but the predominant one was sadness. I felt sad for his family, friends, and especially his children, who must be going through the most trying time of their lives. It’s hard for me to comprehend all those things, knowing that we were going through the same thing at the same time, yet seeing how differently our stories have deviated today.
In the LinkedIn post, his family say that he found great comfort in his final days knowing how loved he was. I wish I’d have known what was going on so I could have messaged him again, but I’m glad that others, people much closer to him than I was, did. I’m unsure what I would have said anyway, but I would have liked to have tried. He offered me support at a testing time in my life, and his story gave me a feeling of kinship that I had struggled to find elsewhere, as he was also statistically young for the cancer. I coveted his employer, whom he praised for being so supportive in response to the news, something I had not felt. We discussed our experiences, and I could tell he felt sympathetic towards me, being a fair bit younger than him.
He never complained or conceded an ounce of pessimism to me in his messages. He sounded optimistic even when telling me things hadn’t gone as well as they had hoped. The comments on the LinkedIn post echo the same sentiments from people who knew him, just as the post itself does. Dan was clearly a strong-minded, well-liked individual with abundant love in his life. Perhaps that is all that matters, but it is hard not to feel like it is unjust that he is gone, even from the perspective of someone who knew so little about his life in reality. It’s impossible for me to not reflect back on my own situation when considering it all, despite it being a selfish response to such news.
The biggest fear I have about dying of cancer is what the last period looks like and how it will impact my family. Although I have not gone through exactly what Dan did, I’ve been in that place mentally. While trying to recover from the surgery, it felt like I was going there physically, too. There were times I thought I was never going to recover from it and that it was ultimately going to kill me – either the trauma from the surgery or because the cancer would just come back anyway. As I now move into a more settled world, one where cancer has less of a hold over my every thought, I struggle to shake off some of that anxiety. Despite this, my life has returned to a level of normalcy that I thought was impossible. Reading about Dan’s courage in the face of his diagnosis makes me reflect on my journey and whether I achieved that feat.
In my experience, being diagnosed with something like advanced pancreatic cancer, especially when you believe that you are a healthy individual, kicks you into a different gear mentally. It’s a rollercoaster that you didn’t consent to getting on and don’t have any means of getting off again. Upon being diagnosed, I had a rush of adrenalin that lasted all night. I sat in the hospital bed thinking about everything I’d done in my life; the relationships I had fucked up because of my own negative behaviour, the arguments I’d had with my family, the general frustrations I felt with myself, like the way that I had quit A-level maths as soon as it got to a level of difficulty which would require me to actually try.
Over time, I realised that how I felt about it was irrelevant. What would happen would do so in total ignorance of my mood towards it. The only person I was shortchanging by feeling bad about it was myself because it would make it harder to deal with. There were moments where things felt unbearably hard, and strangely enough, a lot of the parts that stick out to me now are after the surgery, despite knowing that I’d had a good outcome from that process. But my friends and family banded around me like they always have done, which made a world of difference, and the whole experience turned into something quite positive in many ways. Of course, I wouldn’t ever suggest it is beneficial for anyone to be diagnosed with cancer, but for me, I had to make the whole thing mean something. If I believed it was all for nothing or that I had caused it to happen to me because of some set of circumstances in my life, such as drinking too often during university or eating too much ultra-processed food, then I wasn’t sure if I would be able to deal with it.
It sounds like Dan stayed positive to the end, and I hope that acts as a beacon of hope for his family. All I can say now is this – Rest in Peace, Dan. You put such positive energy into the world, and reading through the responses on the LinkedIn post is a testament to that. I wish we could have spoken more in the last year or so, but I’m sure you had plenty of support and love from those around you who really mattered to you. Those messages we shared will always be special to me.
In solidarity with my body, I signed up at my local dentist’s practice and got my teeth checked out for the first time in a year and a half. I was inspired by my wife, Anna, and our flatmate, Matt, who both took similar action, signing up for a dentist and attending appointments within a week of each other. I started to feel left out and self-conscious of my teeth. My sense of FOMO outgrew my urge to continue my dental lethargy, and I found myself sitting in the dental office on a Monday morning. The whole process was quick, I have to say. I called on Saturday and was there two days later. Not bad.
“How’s your general health, Daniel? All good?” The dentist didn’t realise what she was sleepwalking into with questions like this. Neither did I, for a second.
“Yeah, not bad, thanks,” I responded before realising that the question wasn’t just a formality and was actually part of the induction. I quickly backtracked. “Sorry, no. My health is ok now, but I had stage 3 pancreatic cancer in 2021. I’ve been clear for over a year, but I didn’t have any checkups at the time as I was advised against it whilst on chemotherapy.” I had my excuses armed and ready to go. Cancer is difficult to shoot down, so I felt safe.
The dentist looked a little dumbfounded for a second, but we pressed on. I explained about the chemotherapy, the operation, the diabetes, blah blah blah. I’m bored of writing it all out, so I’m sure you’re getting bored of reading it.
The dentist and I established some common ground along the following margins – Kings College London is an amazing hospital, modern medical technology is wonderful, how me being alive is proof that there’s a God (this was her take, but I placidly agreed with the sentiment) – before cracking on with the examination. My teeth are apparently in good condition. No fillings are required or anything. She did ask me if I drink a lot of coffee, which made me feel a little paranoid that it was this obvious just from looking at my teeth for a minute. The staining gave me away, but she said that the hygienist would be able to sort that out. I assumed this meant that my hygenist appointment would be with someone else. Lo and behold, my hygenist appointment was with her, too. Quite the trick to play on me, telling me that the hygenist would sort it out, only to reveal at my next appointment a week later that she is the judge, jury and executioner at this dental practice. Touche.
My cancer story has become my rabbit out-of-the-hat trick. It’s my only rabbit-out-of-the-hat trick, really. I’m a one-trick pony in that regard. But every dog has its day, and my day seems to be lasting a while. Thursday, January 25th, was my next opportunity to put this theory to the test. Another January scan-uary. Getting scanny in Janny. Well, here we go.
The Scan of Dan
A cruel part of being diabetic and needing regular CT scans is having to wear a Continuous Glucose Monitor (CGM) on your body. The device is a small plastic circle with a needle inside, which snaps in place via a plastic applicator. My device is made by a company called Dexcom.
Dexcom likes to remind you that the devices aren’t compatible with CT scans, so you should take them out before having any such scan of your body. I usually avoid this problem by wearing it on the back of my upper arm, so the device doesn’t enter the CT scanner (I have to put my arms above my head during the scans, so the X-rays can really hit that abdomen area in search of any pesky tumours). This stops it coming into contact with the scan and means I don’t have to take one of the devices out every time I have an appointment. It costs me £170 a month for the privilege of having these devices. They’re expensive business.
In a moment of madness before my last scan, I decided to try applying the device to my stomach fat to see if the readings were any more accurate. I’d gone through a period of having a lot of problems with the device when inserted in my arm – the connection was cutting out a lot, and my readings would frequently not line up with readings I’d take using the old-school finger prick method. I hoped that something about my arm fat was defunct and that I could solve the issue by applying the device to my stomach fat. This lapse in judgment only revealed itself to me the following day as I made my way to the hospital for the scan and remembered that the previous day, I had decided to install the device in the worst possible place for a CT scan of the abdomen.
I had waited until I was in the imaging department changing room to do anything about this realisation. Sitting on the wooden bench, I wondered whether I could get away with leaving it in. I read an article years prior to this about a woman who had a metal plate in her shoulder but did not warn the medical team when having a scan, and the magnets inside of the scanner ripped the metal plate straight out of her body. At that moment, this story was vivid in my mind. Risking leaving the Dexcom device inserted seemed illogical. This train of thought made me wonder why I was even considering leaving it in. What a stupid idea.
As I tore it out that day, depriving myself of those regular meter readings that provide me with so much confidence in my day-to-day life, I felt dumb. Really, really dumb. Why hadn’t it occurred to me that inserting it into my stomach on scan week was a stupid idea? Because I am dumb. That’s why. At least I’ve learnt that about myself. I do seem to learn from my mistakes, though, as I had inserted the device into my arm this time. Well done, Dan. I had managed to do the absolute minimum preparation I should expect of myself before a scan.
Yet, despite managing to prepare by not inserting my glucose monitor into my stomach, I did not manage to locate the pre-scan questionnaire sent alongside the letter notifying me of the scan date. This was pretty damn dumb. Considering I have had north of 8 scans at The Christie at this point, it should be pretty easy to remember this form. Well, if this is what you’re thinking, I’m about to make you look silly. I actually DID remember that I needed to fill in the form; I just had no idea where I put the form upon receiving the appointment letter, so I never had any chance of filling it in.
Anna, my mum, and I had planned to get to the hospital early to give me time to ask for another questionnaire. After a long lunch and a lengthy spell of sitting in various traffic jams due to us making our way to the hospital at the exact time everyone picks up their kids from school, we pulled up outside of the hospital at 16:00 on the dot. My appointment time happened to also be 16:00. That plan of being early tripped on the first hurdle, I guess… I got to the sign in desk a couple of minutes late, but nothing too bad.
Still, NHS appointments know a thing or two about being late, and this one was no different. It was 17:40 before I was actually in the room with the huge CT scanner. To be fair, it always takes at least 50 minutes from the appointment start time, as it takes this long to drink the dye required to do a contrast scan. The nurses give you a large bottle of liquid and a plastic cup once you have gone through the questions in the questionnaire. They tell you to drink two cups straight away, then another cup every 15 minutes until all of the liquid is gone. After about 45 minutes, most of the drink has gone, and they call you into the next area to have a cannula put in your arm before inviting you into the scanning area. This time, I had finished all of the liquid so long before being called into the next area that I started wondering whether it was OK for me to drink some water, as I was feeling thirsty.
The scan was nothing extraordinary. I don’t know when I’ll get the results as I haven’t received a note of my follow-up appointment. When I was still in the midst of fighting the cancer, the appointment was always within a week of the scan. Nowadays, I’m more on the periphery of cancer, so the turnaround times on the results have also gotten more lax. I’d rather my result appointment continue to be far away from my scan date if that is what happens to people who don’t have reoccurrences. It seems like a small price to pay. But it means that I generally unwind from the scan a little easier, as I know there is no immediate meeting to be stressed about. As soon as I know that date, however, that will drastically change. Waiting a couple of weeks for an appointment where you may be told there is another army of tumours waging war inside you is a little stressful, to say the least.
The Tuesday before my appointment, I had been travelling home from work on the underground. There were people packed into the carriage like sardines, so much so that if you were sitting down, you couldn’t see beyond the standing torsos in front of you. Somewhere in the carriage was a man whistling with a distinct vibrato. It was silent other than the whistling and the occasional cough. I was trying to read at the time but couldn’t stop myself from focusing on the whistle. I tried to look around me to see who was producing the noise, but it was impossible with how busy the train was. It sounded like the kind of thing that would be in a war film, with the soldiers waiting to be sent to the frontline. I wondered how he knew about my upcoming scan and why he felt it was appropriate to mock me like this. Perhaps he was mocking all of us who were returning home from our cushy city jobs, where we aren’t even exposed to the cold, never mind to the bullets and the death. Maybe he was just whistling a song he likes. Who knows.
As we drove away from the hospital, I thought about that whistling. I couldn’t remember the tune or anything, but I remembered how I had felt listening to it. It was soothing yet strange. There wasn’t any place for it in that train carriage, but I felt that there was a place for it in the car. These things just aren’t there when you need them most. I relied on my memory to fill in the notes of the tune and wondered whether the whole experience signalled my imminent call back to the battlefield. Probably not – the appointment won’t be for weeks anyway, and I won’t even remember that the whistling happened by then. People have told me that my whistle has a nice vibrato, and I remember my grandad had an amazing vibrato in his whistle. Perhaps I just like whistling, and I derive a lot of meaning from it because of my memories with my grandad. Maybe that is all there is to it.
Apparently, blog posts are like buses – you wait ages for one, and then two come at once…
I was innocently trawling around my Apple News app a few days ago when I saw a Guardian article with the headline, “Settle NHS dispute or thousands with cancer could die early, say health chiefs.” Never one to shy away from a cancer article, I marched into it and started dissecting its contents.
It only took a few paragraphs before my infamous cancer was mentioned by name – “Patients diagnosed with typically less survivable cancers such as lung, liver, brain, oesophageal, pancreatic and stomach, were particularly at risk from the disruption caused by the strikes, cancer leaders said.” It’s always good news when pancreatic cancer is involved.
As I’ve said before on this blog, I try to spend as little time reading the news as possible. I find it to be one of the most depressing things in the modern age of technology. At least when print was the main form of consuming news, there was a steady cadence to the whole thing. People could willingly pick it up when they felt like it and consume as much or as little as they liked. Now, the news throws itself at you, giving you 24/7 live updates when a big event is happening and forcing you to know who won what at The Golden Globes by sending you headlines every 15 minutes. Of course, it is possible to turn notifications off, but who does that, really? Especially with the news… It taps into that urge we have to stare at a car crash as we drive past it or run towards a fire when we see smoke billowing into the sky. The news is real and exciting, it just happens to also be awful, depressing and plagued with bias.
I still scan the news when I’m idling to see what the headlines say, occasionally opening them when they seem relevant (or stupid) enough to be of interest. This one seemed particularly relevant to me, so it made the cut. Reading about operations being delayed reminded me of the period when I was waiting for critical surgery.
My operation was delayed at the last minute. The surgeon randomly called me the day before my surgery date and told me that he had bad news. My heart skipped a beat, but the situation wasn’t as bad as it sounded. He apologised and told me the procedure would need to be delayed until the next Friday. They did not have the needles required to perform the Nano-knife procedure. Without these needles, there isn’t really a procedure to speak about, as the needles are what they use to send electric currents into the tumour in an attempt to kill the cells. It would be like trying to serve steak tartare with no steak. In this scenario, I guess I was the steak, and the surgeon had to wait another week to tuck into me. It must have been hard for him, poor guy. We were in surgery for 14 odd hours, so he probably needed a steak or 6 by the end of that. Unless surgery puts you off such things… Anyway.
Upon hearing the news of my operation being delayed, my initial response was relief. After the relief came the anxiety.
He hadn’t called me to inform me that actually, in fact, I didn’t have cancer and I was fine… That would have been a truly relieving call. He had called me to tell me that something had gone wrong and that I’d have to wait another week to potentially curtail the cancer, which he himself had informed me was extremely deadly and fast-moving. It isn’t a nice feeling, especially when you just want the damn thing out of you.
Knowing there is a tumour inside of you is a strange feeling. I spoke to my friend George about this as he also had cancer at a young age, which required surgery. At random times of the day, I’d wonder if, at that exact moment, the tumour was developing in some way or whether other tumours were forming in distant parts of my body, unbeknownst to me. Whenever I read about people with brain tumours, I wonder how it must feel to have that sensation when you know it is in the very place where those thoughts are being generated. The whole thing is discombobulating. I’d recommend staying away from thoughts like these, especially if you have cancer. It is hard to not think of them, though. Or that was my experience.
During that additional week when I was waiting for surgery, I frequently thought about whether I should have been angry, but I never actually felt angry. That should have been my answer. One of my siblings suggested that the delay might have just been an excuse and that something else may have gone wrong, which meant that they needed to move it at the last minute. I wasn’t so sceptical. To me, it was all fine. The procedure was still happening and had been organised only 2 weeks before the original planned date. It was all very quick and didn’t cost me a penny, despite it turning into a 15-hour procedure involving an entire squadron of medical professionals.
I’ll never forget what the anaesthetist said to me at my preparation meeting before the surgery – “We won’t skimp on the drugs that day, don’t worry!” She probably makes that joke to everyone, but I like to think that she kept it for me. We giggled together, and I imagine she then looked at my abdomen and pictured it clamped open, a picture I don’t imagine is too difficult for her to conjure up, given her profession. I’ve got a video of the procedure, so it isn’t too difficult for me to picture it now. It’s pretty gross, as you can imagine.
Would I feel annoyed if my operation was delayed because of a doctor’s strike? I’d like to think not. Those moments where you feel vulnerable, such as when waiting for an operation, knowing you have a tumour inside you which exists solely to consume your body, can change your feelings towards such things. I’m sure for the thousands of patients who have had critical care delayed because of the strikes, it is difficult to agree that it is acceptable. Yet, the entire medical system relies on doctors, and it is in the general public’s favour to incentivise smart individuals into the field. They are the ones who push it forward, after all.
Doctors are a special type of person, in my opinion. There seems to be a refined personality type which is drawn towards the profession. They are almost always incredibly calm, thoughtful, level-headed individuals with a curious spark and a genuine desire to help others. I have never met a doctor and thought, “This person seems like a self-aggrandising piece of shit who is only in it for the money.” So, if junior doctors collectively say they are not paid enough, I am inclined to believe them.
That may not make it any easier for the patients who experience delays because of the strikes, though. I have a lot of sympathy for those who have had critical procedures delayed, just as I am sure the doctors do. They’re the ones who help people – not us armchair critics who cast a judging eye over them and shake our heads while we read the headlines. It is them who work long hours and through the night, who try to help drunken, disorderly people who view them as the enemy in their intoxicated haze (I’ve seen this happen in A&E at least 3 times), and it is them who stare death and despair in the face every day, but have to push through it because there is another patient waiting. It really is a gruelling profession. They deserve to be paid properly.
In my less survivable cancer clique, we’re probably used to reading depressing things about our cancers. To me, reading about how these strikes will disproportionately impact those with less survivable cancers just felt like another familiar jab in the side. It’s all water off a duck’s back, eventually. The stats are plastered all over the websites of all of the charities. All it takes is a few meetings with a specialist, and you get a feel for how bad it is based on how slowly they talk to you and how many softening words they use – “…this is a really difficult cancer,” and “…you’re very unlucky to be experiencing this at your age.” The statements are probably true, but you feel a little undersold. A little like referring to a nuclear bomb as a “lively” firework. They’re empathetic people delivering life-altering news. What else are they supposed to do? But that can’t be easy to swallow if you have a chance at a life-changing surgery, and it is being pushed back by a week because of strikes.
So, I tend to agree with the sentiment of the article. We probably should just agree to pay them what they need. I don’t think junior doctors are a greedy, unreasonable subsection of society. MPs find the money to throw at PPE equipment when society needs it (especially when their friends own the company offering to produce it), so why can’t they find the money to pay the doctors a fairer wage? These same doctors frequent the wards at St Thomas’ Hospital, located across the river from The Houses of Parliament, a bastion of power; both stood in a Mexican standoff, destined to never relent.
2024. It’ll take an entire month just to naturalise writing the ‘4’ at the end. The ‘3’ and I had become friendly with each other, but it’s all over now, and it’ll never come back. I’m mentally scribbling down a few New Year resolutions in my head as I write this…
“Keep not dying of cancer…or anything else.”
Hmm, it’s not the snappiest resolution. It’s not the kind of thing I want to shout too loudly at parties, either.
“Stay alive”
A little bit obnoxious and non-committal. It makes me sound like I have problems holding myself to account, so I opted for the resolution with the lowest requirement in terms of actual effort. Perhaps I don’t need a resolution – I never usually bother, so why start now?
Staying alive is actually a lot of effort for me. Anyone who has diabetes will attest to this fact. All I would require to fail my resolution of staying alive would be a packet of dairy milk, a glass of coke, and the decision to not bother plunging any units of insulin into my stomach fat, of which there isn’t too much these days. There never was, but it’s a good segue into my next humble brag.
2023 ended on a high for me. I still don’t have cancer (I’m smashing resolutions I haven’t even committed to), I’ve been exercising 6 days a week, and I’m managing to go out and do things with only a moderate fear of throwing up or feeling debilitatingly sick. Quite the feat for someone with half his insides missing; I hope you’ll agree.
The way that the schedule has shaken out for my 6-month scans means that every year is now punctuated perfectly at the beginning and middle with a progress scan. This year, my January scan has been scheduled for the 25th, and I received the letter informing me of that just a few days before Christmas. “Wonderful… Here we go again,” I thought.
Predictably, this information was the catalyst of a few days of fear and loathing in Las Daniel. I had some strange dreams that made me feel uneasy, and I crawled back into my pessimistic headspace for a while. Every stomach ache was another tumour, more aggressive and spiteful than the first one. Of course, then the stomach ache goes, and I get on with my life as if the whole thing never happened. It’s all good. The rollercoaster of life does run-eth on-eth, as Shakespeare once said (probably). I do this thing when I’m feeling a little glum about cancer where I listen to a lot of emotionally charged music, don’t speak to anyone about the fact that cancer is on my mind, and get very mopey. These periods are when I get most tempted to write a blog post. I seem to enjoy surprising my wife by not telling her how I’m feeling, only for her to find out when I post a really depressing blog post on the internet for all to read. I’m trying not to do that now, but it means that I am starving myself of the most appealing time to write. It does paint a negative picture of how I’m feeling, though. In terms of my online persona, most people probably think I was better at cracking jokes when I was eyeballs deep in chemotherapy. The scary thing is that I might have been…
I’m past the trepidatious stage now. Well, maybe the trepidation has been transferred from the category of ‘cancer scan’ to the category of ‘January planning’. Cancer fear has a certain entropy about it – always transferring, never burning out. My wife and I started the year by considering buying a new house, which was terrifying and mesmerising in equal portions. Potential is a fine thing, and there’s a lot of potential in moving house, but then you remember that it involves selling your current flat, moving all of that stuff you’ve accumulated into another place, AND dealing with mortgages again. All are very unpalatable to the individual who just wants an easy life. Just writing all of that reminded me why moving house is, in fact, dumb, bad for you and an illogical life decision. Wow, I forgot how decisive this blog makes me. I should write here more often.
Luckily, the desire didn’t last long, and we’ve decided that we’re happy in our 2-bed flat for now, pushed into the eaves of a 3-story building with no lift. I like the exercise of traversing the stairs, but I don’t think our dog appreciates us having to walk her outside each time nature calls due to the lack of outside space. She shares our bed with us, too, so she gets to share all her most intimate moments with us – lucky girl.
There are exciting things brewing in 2024. We, the human race, are nearly a quarter of a century past the millennium, which is absolutely meaningless in reality but emphasises just how quickly time passes for me. I have vague memories of going to the Millennium Dome as a 7-year-old child, but I have far more prominent memories of going there as a 20-something adult and drinking myself half to death in some of the bars dotted around the strange dome building, just after I’d first moved to London. The fact that people born in 2006 will legally be allowed to drink in pubs in England by the end of this year is a detail that feels even more alarming to me. We really need to slow this down, guys; I’m starting to feel anxious.
Yet, the passing of time has allowed me to feel peace with my life again after that treacherous year. Cancer came, and cancer went. Eventually, it is all a vague memory, more associated with a particular set of smells and feelings than any particular event. There are sad tinges which have retained their venom, like the morning of my first-ever chemotherapy session when I sat on the floor of the shower and hysterically cried. I kept my hand tight over my mouth to mute the sounds so my family wouldn’t hear – I didn’t want to worry them. Or the moment I was diagnosed, when I surveyed the room around me and saw my fiancé and mum crying, but I struggled to feel anything beyond validation. I knew this would happen to me; I’d thought about it many times throughout my life. It took a few hours for me to feel anything else. The whole experience was enigmatic, and it remains so to this day. Sometimes, I feel sad. Sometimes, I feel grateful. I think that’s normal.
Whenever I have to go to the hospital now, the smell of the disinfectant still makes me cringe. I developed a really bad association with it during mop-up chemotherapy. A nurse from Macmillan came to see me during one of the sessions because the staff had informed her that I didn’t seem to be acting like myself. I’d been sitting on the ward with my head between my legs and my eyes closed. The smell of the place made me want to throw up – nothing to do with the chemotherapy coursing through my veins, I’m sure – and I was starting to hate having to go there. The Macmillan nurse gave me a foot massage, claiming that it helped to relieve nausea. The whole experience was really calming, but it hasn’t stopped me hating the smell of hospitals.
Pancreatic Cancer Action recently asked me to write a blog post for their website. I’d done one previously when I was in the middle of the first regime of chemotherapy. They said that they wanted to kick the year off with a positive story to remind people that Pancreatic Cancer does have some happy endings, despite what the internet portrays about it (just google Pancreatic Cancer now if you want to know what I mean – it’s a very doomy topic indeed). I liked the idea, and I was happy to oblige.
As I read the piece back, I felt it was more negative-leaning than I had intended. It made me think about the role writing played in my cancer journey – how it provided structure when I was unable to work and allowed me to connect with others who were going through similar experiences. I started to feel guilty that I’d left those people in the lurch for all of this time, people who may still be suffering from the ailment that bonded us.
So, I’m here to tell everyone that I’m doing alright and that things are still positive, despite all the negative shit I always bring up when I put my finger to the keyboard (the modern equivalent of putting ‘pen to paper’). Diabetes still sucks, but it sucks less. Cancer still sucks and will never stop sucking. Recovering from surgery still sucks and probably will only get harder as more time passes, and I realise that I am no longer recovering and that I’ll always have issues with eating and exercising. I try not to let that stop me from trying, though. Plus, I’ve developed a relentless attitude for cooking and baking and spend a good 2 – 3 hours each day in the kitchen, so I’m clearly dealing with the eating issues in the most Freudian way possible. I’ll post a few pics of the cooking at the bottom just for fun. It’s my blog, so if I feel like posting pictures of stuff I’ve cooked and baked despite it barely being relevant, why the hell not, right?
The blog post for Pancreatic Cancer Action can be found here. For avid readers of this blog, it may not present any new information, but you might enjoy it anyway. I will aim to update this blog at least once a month in 2024. Maybe I’ll even call it my new resolution, alongside not dying. Taking on 2 New Year resolutions is quite the burden for someone who usually sets himself 0. We’re moving into the Chinese Zodiac Year of the Dragon in 2024, so perhaps it is the year to push ourselves beyond our human boundaries… a little bit over the top, considering I’m talking about setting New Year’s resolutions…
It didn’t feel like it had been so long since I last wrote a blog post, then I checked and saw that it was in July. In my defence, it was at the END of July, but it was still a while ago. I guess some of that feeling comes from the fact that I know I’ve written things for the blog in the meantime, but I haven’t liked any of them enough to post, or the idea hasn’t developed enough to feel that the post was complete. My drafts folder is looking more bulked up than ever, boasting an impressive 16 posts which now live in there, untouched by the human eye and unlikely to ever be pondered over by anyone other than myself.
Occasionally, I humour them by opening a few of the draft posts and seeing what I thought it was worth writing about that day. I giggle to myself as I read the words, sometimes finding a sentence that I actually like or think is well written, but mostly just guarding myself from the feeling that I should have really committed a little more time to each of them, and allowed them to flourish into something worth reading. It is difficult to see them as anything but a snapshot of a feeling I had at a time that isn’t now, which I sometimes struggle to associate with. That is why I mostly write them off as nonsense, but I’m sure they could be valuable in the future. They’re usually based on an Ok idea, I just get bored somewhere in the writing process and decide that what I’m saying isn’t interesting enough to share, or comes across too strongly when I look at it the next day with a fresh pair of eyes. Who is to be the judge of that, though, if I leave them derelict in the draft foder? Clearly no one reading this blog as you’ll never get the opportunity to read any of them. It is only my own ego which sits in judgement as I read back through them, finding it too try-hard or too emotional to acknowledge them as anything valuable. Some of them are just boring, though.
I’m glad to report that there isn’t much to report, which is the best kind of report to receive when you’re trying to survive cancer. Bastard fucking cancer with its hard ‘K’ sounds. KAN–SER. It sounds a little like the words “Can” and “sir” when you overemphasise its pronunciation like that. It makes me think of the classic line from Oliver Twist – “Please Sir, I want some more,” – which then seems totally out of place in this context, as I don’t think anyone would be begging Sir Can for some more if he was dishing up what he served me. I’d actually like a refund, if possible – 1 pancreas, 3/5s of my large bowel (I still find this a very unusual amount of bowel to report to have taken – wouldn’t you just say half to make things easier for everyone?!), 1 bile duct, 1 gall bladder etc etc. I’m not actually going to reel off a shopping list of the internal organs I lost in the operation; especially as it all resulted in 1 tumour also being removed, which does justify all the other stuff that went missing. Still, the list of things taken is eye-watering. Speaking of the tumour, I had some scan results a few months ago…
In one of my last posts before falling off the face of the internet, I said that I’d been to The Christie for a scan. The results of that scan took a few weeks to get back to me. No follow-up appointment was scheduled, and then when I received a letter informing me that it was booked, the date of the appointment read ‘November’. Usually, the team strive to give you your results about 7 days after the scan takes place, so this seemed fairly irregular, to say the least… I’d had the scan in July, after receiving a call from The Christie to request that I go in early, as they were very busy over the next couple of weeks. It is because of this conversation that I didn’t feel very alarmed that no follow-up appointment had been booked yet, but upon learning it had been booked for November, I did grow a little concerned at the lack of alertness. I played some mental gymnastics with myself – the conclusion I drew was that they had clearly reviewed the results, seen nothing to worry about, and put me to the bottom of the priority queue, where I was happy to be. There was a niggling feeling that I was expecting too much of the overstretched NHS, and that they hadn’t looked at the results, and wouldn’t until my appointment was due. I was wrestling between those 2 opposing theories.
Over the next few weeks, my mum would regularly bring up that I must contact The Christie and ask them whether the appointment was correct, or if it was a mistake. I was pretty confident it was a mistake, but I was also pretty confident that I wasn’t in a hurry to get the results. I’ve spoken before about how getting the results of a scan can feel like the critical point, as if receiving the results are the point in time where the problems begin. The problems beginning are obviously, in reality, when the damn problems arise physiologically in the body i.e. when your body gets bored of being cancerless and accepts another invite to the tumour’s cancer party – a ruse you really hope your body won’t fall for again, but one which you know you need to keep an eye on, as your body is a guilable bastard. The scan only alludes to whether there are any problems, and allows one to start addressing those problems (by ‘one’ I actually mean ‘the oncology team’ – all ‘one’ does is sit there absently through the whole affair and feel upset a lot). Still – it takes some mental effort to pick up the phone and explain the situation, effectively rerouting the collision course of your life back to the hospital, as opposed to anywhere-else-in-the-whole-world, which is much preferable. I think it took me about a fortnight before thinking that I was being very stupid by not making the call.
So I did it. I got through to the switchboard and asked for the scheduling department. The scheduling department told me that they would get in touch with the HPB team as their department does not organise any follow-up appointments, and only scheduled chemotherapy appointments. She told me that she would ask the team whether the appointment had been incorrectly scheduled and get back to me. The operator agreed that it seemed irregular to receive a follow-up meeting so far in the future once having a scan done, which was encouraging to hear. But my theory about the results definitely being good was out of the window, so that didn’t feel so encouraging.
Despite knowing all of this made logical sense, and fully assuming that the meeting would be moved forward, I was stunned when I received a phone call back about 30 minutes later from the same scheduler who askied me if I could attend the hospital the following Thursday. All of a sudden, I was a nervous wreck who wanted this random scheduler to console me in ways that I knew she was not able to.
“Do they think something is wrong? Why have they decided to prioritise me?” I asked, trying to mask my nervousness, but doing a very poor job of it.
“I’m not sure, Sir. They just said that they need to give you the feedback from your scan. Try not to worry about it. Can you make the appointment?”
I agreed that I could make the appointment, then babbled on a little bit more about this and that and cancer and reoccurrence and tumours and diabetes and blah blah blah. She was getting a live blog post – lucky her!
At some point the call ended and I felt regretful for pursuing the issue. Before, I was just a guy with an appointment at a hospital in November. November was 3 whole months away – 3 months!! 3 more months of being cancer-free! But I’d decided to schedule my diagnosis to be earlier. What an idiot. Who does that? I then felt weird reflecting on how I had reacted upon learning that I had an earlier appointment, especially as this was the exact result I had expected, and that knowledge is what had driven me to make contact in the first place. It didn’t make sense to have a scan in July and results in November – a lot can happen in that timeframe which would make the results irrelevant, so of course it was going to be brought forward. Still, the doom clock struck 0 and I reacted the way that I did. It is what it is. I’m sure it is rational in its own irrational way. Two amazing things happened at the hospital on the day I got my scan results.
Amazing Thing No 1
The first of those things happened as I sat there, waiting for the electronic appointment screens to summon me into a room. Me and my wife were in the usual mood that the hospital brings upon us – one characterised by quiet concern and looming doom. We speak little and do our own thing, mostly…
“Excuse me – are you Dan Godley?” The voice came from behind my chair. I turned around to see a woman standing in front of me with a neat smile painted across her face. I confirmed that I was indeed Dan Godley, and she proceeded to tell me that she was a reader of the blog.
We spoke at length about her diagnosis, stage 1 pancreatic cancer, and the difficulties of dealing with it all. There’s something magical about this blog – people who read it know a lot about me, probably more than I realise, yet I know very little or nothing about them. I often forget that I’ve written about something until I go to tell someone about it and I find that they finish my sentences for me, or ask a leading question which preempts the next part of the story. It happens a lot with my friends and I always feel a little silly, as if I’ve personally told them those things 5 minutes ago but then forgotten.
The fact that people know so much about me seems to disarm them of the normal filters which they may place around their emotions, and I find people speaking very frankly to me. This conversation felt a lot like that, with us sharing intimate details of the lows, the inescapable panic which comes and goes, the fear of receiving scan results and the difficulty in getting through chemotherapy, especially on the harder days. It was really lovely, and 20 minutes flew by in a flash – something which doesn’t always happen when you’re waiting for scan results.
Something she said really stuck with me… She was worried to see me at the hospital after not seeing any blog posts for a few weeks, thinking that I may have had bad news. It made me worry about the community on here and what they must think given the silence. I felt very motivated to write something that evening, but I didn’t find the time. That excuse starts to lose water when I consider that I got my results in mid-August and it is now nearly October. But I’m writing now. That’s better than nothing, right? This leads me onto the other amazing thing that happened at the hospital that day…
Amazing Thing No 2
Even for The Christie we were waiting a long time that day. I wasn’t called into the room until 2.5 hours after my scheduled time. It was about 17:15 when I was finally sitting in the consultation room, waiting for the oncologist. This part of the process always takes at least another 30 minutes, and it is the most nervy part of the day. Anna and I usually sit in heavy silence, listening to our heartbeats increase every time someone traverses the coridoor past the open doorway of the consultation room. The only thing which breaks the silence is the sound of the oncologist’s footsteps as he enters, solemnly smiling and closing the door.
Around this time there was a general shortage of Creon, which is the supplement that I have to take to allow my body to digest fats and other nutrients. Without it, my body cannot absorb a lot of the key nutrients from food, so it is critically important to me. Despite it being so important to my health, I cannot get enough of it to build up a stock as the pharmacy will only prescribe me enough for the next month, and the GP won’t sign off an allocation of more than this amount. That means that when I put in a prescription request for the next month, have it approved by the GP, then go to the pharmacy to try and pick it up, it is critically important that they have it. The problem is that they don’t always have it. I show up at the pharmacy only to be told that there is an issue obtaining it, and I have no backup plan as I haven’t been able to build up a store.
What I do know is that specialist centres get priority of specific medication, and The Christie always has a bulking supply of Creon. They had written an emergency prescription for me that day, but I had to wait for a GP to sign it off before I could pick it up. The pharmacy closed at 18:00, so upon being called into the room, the nurse encouraged Anna to go and pick up the medication shortly or we’d miss them. We waited for a while in the room, but it got to about 17:40 and there was still no sign of the oncologist, so I told Anna to go and get the prescription before it closed.
Obviously, about 2 minutes after she left, the oncologist walked in, armed with a smile, which could mean anything from “It’s good news,” to “try and stay calm, but I regret to inform you that you’re totally fucked.” I am pleased to report that it was the former and not the latter!
Not only were there no signs of a tumour still, but the enlarged lymph nodes which had been concerning the medical team in the previous 2 scans had returned to a normal size and were no longer visible on the scan. It was a huge relief. I don’t know how many times I need to receive good news before I stop presuming that everything is going to go wrong all of the time. Maybe that’s just how I’ll always feel about things now. I find it easier to enter these situations with my walls raised high and scepticism flowing freely so if it is bad news, I am somewhat expecting it. The problem with that scepticism is that it doesn’t only exist when attending scan results. It becomes a cancer in its own right that permeates through the rest of life.
None of what I am about to say here is new, but I’m going to repeat it anyway… Although I would describe myself as a fairly positive and enthusiastic person, I feel like I struggle to engage with the world in the same way that I used to. My ability to feel positive emotions has been blunted, and I’ve found a strange ether that I exist in, still feeling more certain than not that cancer will kill me, but not having quite the same ability to process that feeling in a healthy way. When I was on chemotherapy, I dealt with it all fairly well. It didn’t matter whether I had a week, month or year left – my focus was on being happy. It still is my focus, but executing it is a difficult feat. The looming shadow which cancer casts over your life – one which impacts your relationships, many aspects of your lifestyle, and a host of other things – is hard to escape from. Trying to make sense of all of that, as if it is normal, is difficult.
All of this sounds more melodramatic than I mean it to be. I’m not suggesting I am never happy or that I am unable to enjoy life with a positive perspective at all. I manage those things, but they are more difficult to achieve, and almost impossible to sustain. I’m sure that was true of my life before too, even if I can’t specifically remember it now. I am aware that the difference between ‘People who are happy’ and ‘People who are unhappy’ is not a straight split between those who have not had cancer and those who have, although I suspect those who have do find themselves being a little more unhappy – it would be worrying if they weren’t. The grass is always greener, and it is useful to remind yourself of that fact.
In many ways, that difficulty dealing with the reality of life now stems from a return to a more normal set of circumstances. I’m back to committing myself to work properly, hanging out with friends and nurturing my hobbies (I am cooking and baking for at least 2 hours a day at the moment, which is a little excessive). It’s a welcome set of circumstances to be, and I remind myself that I am grateful to be where I am every day. Knowing that I am grateful doesn’t erase all of the other feelings, though, so I still have to deal with them.
Yet under these circumstances, I still have a very good life. The summer was wonderful this year. I used to prefer winter because the long evenings felt comforting to me, but this year I found myself really enjoying the long hours of daylight. The transition back to darkness at 20:00 is a little disheartening, but I feel ever more confident that I’ll still be around to experience the longer days again next year. That feeling of hope is nice, and I try to dwell on that more than the negative feelings. Despite the bad dreams, the sleepless nights and the strange pains I get in my abdomen, my quality of life has reached a level I doubted it ever could again. I like to go walking, to eat varied food and even find myself enjoying baking, and enjoying the spoils of it. My new thing is trying to make perfect croissants – I’ve had 2 attempts so far, and the second ones were far more convincing than the first.
Croissants Attempt 2
I think the most productive mindset any individual can have is to just have goals in your mind and stay motivated. I don’t mean far reaching, difficult goals. I’m talking “find a nice lemon cake recipe and make it after work,” and “walk my dog for an hour today.” It doesn’t feel like a lot, but it keeps things ticking. I got through chemotherapy using that method, and I’m still alive today, so it must be worth something.
Another Cancer Story…
Finally, I’d like to give a big shout out to my friend George. He was diagnosed with testicular cancer this year at the young age of 27 (he beat me by 2 years – that bastard; I can’t say I’m the youngest to be diagnosed in our friendship group now). This is the same guy that weeks before his diagnosis had sent a video of him to me where he was dancing to Mr Brightside by The Killers, only to replace the lyric ‘It was only a kiss’ with ‘It was only a cyst’, referencing my original diagnosis – a cyst on my pancreas – which ended up actually being a big ole tumour. The video still makes me laugh a lot every time I watch it, despite the events which occurred just a few weeks after this took place. Unfortunatly for him, he was also told it could just be a cyst, but was then told that it was cancer.
Luckily, his treatment was straightforward – if having a testicle removed can be considered straightforward. The surgery went well, and he did not even require chemotherapy (HAH – I definitely win on the severity of diagnosis and treatment, so it’s 1 all). He was also treated at The Christie, the hospital where I have received all of my treatment.
To show his appreciation to the hospital, he cycled from the village we grew up in, to my flat in London, AND BACK AGAIN, all in 1 weekend – this weekend! It is just under 200 miles EACH WAY. Absolute psychopath.
For his efforts, he raised over £2000 for The Christie, and earnt the respect of everyone who knows him (and probably many that don’t). It is a phenomenal achievement, and we’re all so proud of him. Please enjoy the video of him arriving at the flat on Saturday night below!
George Arrives in London!
Thanks for sticking with me, and I hope all of the readers of this blog are doing well! I’ll try and not leave it so long before the next post but if I do, know it’s. forthe best reason – if ANYTHING goes wrong from a health perspective, I’ll be straight on here to complain about it! I’m going to sign off with another picture of Lucy, because I have them all over my phone and I feel a burning desire to share them with anyone I can.
Today, we delve into the fun world of diabetes again. Something you have to adjust to when dealing with diabetes is your body randomly changing tact with you. One day, everything goes smoothly and being diabetic feels easy. Then the next day, nothing seems to work and you can’t figure out why your blood sugar levels are all over the place. I’ve had an issue with extremely high blood sugar levels during the night recently. It developed overnight and with no explanation. I also tried to talk to my diabetes team about getting my CGM device funded by the NHS as I currently pay for it myself, but didn’t find much success in doing so.
Basal Insulin
My diabetes has been implementing the “treat em mean, keep em keen” strategy on me recently. Things were going well with it and I’d been feeling pretty righteous about the whole thing. “Clearly I was made to have diabetes,” I thought to myself, whilst I reviewed my blood sugar data a few weeks ago. My levels were showing as 90% in range for the previous 14-day period, which is actually a really impressive number if I do say so myself. That means for an entire 2 weeks, I was doing 90% as good a job as my old twat pancreas would have done, had it not decided to elope with its new tumour, forcing me to divorce it from my body. Unfortunately, the honeymoon period between me and my diabetes didn’t last, and the last 7 days or so have been a lot more stressful.
I am on a basal-bolus insulin regime. I’m not sure whether everyone who has to inject insulin is on a similar thing, or if I am on it because of some characteristic of my diabetes, but it is the regime I have been on since I woke up in the hospital and was informed that my entire pancreas ceased to exist within my body. The type of insulin that most people know about is called bolus insulin, and it’s the one used to counter the blood sugar spikes caused by eating. But there is another type of insulin in the diabetic’s toolkit which constitutes the basal part of the ‘basal-bolus’ regime.
Basal Insulin, also known as long-lasting or background insulin, is (ideally) injected at the same time every day, and helps to keep the blood sugar levels flat throughout the day. My friend Andy, who is a scientist that works in a lab and everything, looked into the differences between basal and bolus insulin when I first explained this all to him, as it seemed to tickle his scientific interest. After researching the differences on his phone for a few minutes, he tried to explain them to me… I think I remember the word cell or protein or nuclear or proton or Pythagoras or quantum or something, god knows, but it didn’t make enough sense to me to make me understand. At least he learnt something. I don’t know what the physical differences are between the 2 types of insulin, I just know the differences in how they affect the little graph on my phone used to visualise my blood sugar data, and I’ve recently discovered a little more about just how useful the basal insulin is, at least when the dosage is correct.
I’d had a problem with the amount of basal insulin I was injecting before. Originally, the diabetes nurses at Manchester calculated how many basal units I should inject every morning. They did this by sitting with me and asking me what I would eat during a typical day. This seems like an easy thing to answer, but I like to cook a lot of different things, and I couldn’t really think of an accurate summary of a standard day. My diet had also changed a lot because of the cancer and the chemotherapy. I couldn’t eat as well as I used to, and how much I could eat would vary from day to day. Despite this, we went through what an average day looked like. Based on that conversation, the diabetes nurses told me to inject 20 units of basal insulin every morning.
I started out doing this and didn’t really know what any of it meant. My blood sugar levels were all over the place during this time anyway, so it’s all a bit of a diabetes blur. It remained that way for a couple of months but got more frustrating once I left the hospital and had to manage it all on my own. My blood sugar levels would constantly go low during this period, and I barely ever managed to sleep for more than 2 hours without my diabetes alarm waking me up, which was driving me insane. I also had difficulties during this period with recovering from the operation, trying to understand how to manage my diet now that I was diabetic, and just general coping with alive – it didn’t feel easy at all with these various forces working on me. I didn’t know what having diabetes was like and sort of assumed that these difficulties with managing my blood sugar levels were going to stay that way forever. I thought it was an endemic diabetic problem.
A few months into managing my blood sugar levels myself, I started getting a little more confident in what I was doing with injecting insulin, and decided that I needed to understand more about why my levels were dropping overnight. After doing some more research, I read that this was a common symptom of injecting too much basal insulin. The bolus insulin, the type that you inject with food, won’t have any effect outside of about a 4-hour window. The specific window depends on the type of insulin being used as some have larger active periods than others. The basal insulin is useful because it keeps the glucose levels balanced during periods of fasting throughout the day (for example, between lunch and dinner, or over the nighttime when we are asleep). During these periods, the body continues to release glucose into the bloodstream. Without basal insulin also in the body, this release of glucose would keep pushing the sugar levels up in the bloodstream. The basal insulin controls this.
The reason that the blood sugar levels will be dragged down if your basal insulin is too high is that there is too much insulin in your system for the amount of glucose that your body is releasing during these fasting periods throughout the day. If the basal insulin levels are too low, the blood sugar levels will go up during these fasting periods, as there isn’t enough to deal with the flow of glucose. Mine was clearly too high during this period, so I decided to lower it by 25% after reading this. I’ve since learnt that you aren’t really meant to simply lower it one day, and should slowly drop the amount down in small increments every few days, as this allows one to see how the glucose levels respond to the change. Dropping 25% seemed to weirdly work for me, though, and this is how much basal insulin I’ve injected ever since, with very few issues coming from it. That is until recently…
Night Time Highs
Just over a week ago, I woke up to see that my blood sugar level was at 19.1. For reference, most healthy bodies will keep their blood glucose levels between 4 and 7… 19.1 is very high. I didn’t understand what had happened as I hadn’t eaten for 3 hours before going to bed, and the levels didn’t reach this high until about 7 hours after eating. My levels had been fairly balanced up until that point, and I hadn’t done anything unusual that day.
Then it took a very strange amount of insulin to get it to come down – about 7 units in total. That is more insulin than I would usually inject for my evening meal. Even for a pizza, which is one of the most carbohydrate-filled meals you can have, I’d usually only inject about 9 units. My blood sugar was acting like I’d eaten an entire pizza, yet the only crime that I had committed against my health that evening was being soundly asleep and accidentally missing a few buzzes of my diabetes alarm, which was trying to warn me about my level suddenly increasing. None of it made sense to me, but I thought it might be a blip. Yet, this happened again every night for the next 4 nights.
I left a voicemail for the nurses at King’s Diabetes Department and asked for their advice. I told them that I assume the issues are arising because my basal dose isn’t high enough anymore, but that the change seemed to come out of nowhere, so it didn’t make a lot of sense to me. One of the nurses called me back later that day and told me that she agreed that it seemed like my basal dose isn’t high enough anymore, and to inject another 4 units before I go to sleep in the evening to see if it helps. She then asked me to do some ‘Basal Checking’, and asked if I remembered what it was from the DAFNE course…
Now, if you’re thinking “What is basal checking?” – don’t worry, you’re not alone. I have no idea what basal checking is. Sometimes people seem to think that I am far more astute with these things than I am. I’ve only just had my 1 year anniversary of being diabetic, and for that first year, I spent a good amount of time either in the hospital, recovering from being in the hospital, on chemotherapy, or a combination of all of those things. I’ve only just started catching my breath. I’ve also been passed from institution to institution during that time, with no one really taking ownership of my treatment for diabetes until I moved back to London and got put in touch with King’s, due to being rushed into A&E there a few months ago. I didn’t even see a consultant who specialised in diabetes until I was referred to King’s, despite it apparently being standard practice that when you are a newly diagnosed diabetic, you are assigned an endocrinologist who will be in charge of your care. I have no idea what happened with that for me, but I know one thing – it never happened!
I told the nurse that I didn’t have a clue what Basal Checking was, that I haven’t done any courses on diabetes and that I still consider myself a mere diabetic pedestrian, blending in with the other diabetes subjects by holding my insulin pens and complaining about blood sugar, but that I don’t know a lot about it. Her response to all of this was that looking at my data, I manage my levels better than the majority of their patients and that she assumed that I must have been on the course. This was all nice to hear but didn’t feel encouraging for some reason. It just made me think that the majority of people with diabetes must really mismanage it. She told me that she would send me an article on Basal Checking but for now, to try injecting an additional 4 units of basal insulin before bed, as it seems that my basal dose is wearing off a little earlier than they would expect it to, and is not covering me through the night. Neither she nor I, nor any other member of the diabetes team seemed to understand why this change had suddenly happened, but I’ve gotten pretty good at not understanding why things happen to me at this point, so it’s all good.
Continuous Glucose Monitor Funding
I also asked if I could get my Continuous Glucose Monitoring (CGM) device, the device which continually reads my blood sugar levels and sends them to my phone, funded under King’s diabetes budget. I have been paying around £160 a month for it since being diagnosed, which I am happy to do if it is going to make my health better (which it does), but I would rather not have to pay for it if I can avoid it. And here is another conundrum of the health service – the one which means you benefit more from caring less (this is a rather tongue-in-cheek thing to say – I’m not actually suggesting that all people who struggle to manage their blood sugar levels do so because they don’t care enough).
Because I am managing my levels so well, the NHS rules state that I do not need a more advanced device to help me manage my levels. The NHS offer some standard devices which do a similar thing, but these devices have some functionality stripped out of them to make them more affordable. For example, I can set my own warning limits with the device that I pay for and want to be funded under the NHS, so it will tell me if my blood glucose is rapidly rising or falling, and I can set the limits for when it warns me about my levels going too high or too low. The functionality is useful in making sure I catch lows or highs before they become a big problem, and it is especially useful during the nighttime when I am asleep. Without this, I lose a lot of confidence in my ability to control my levels, would sleep worse as a result of this, would manage my levels worse as I would not catch them before they go too high or low, and my control would ultimately suffer as a result. What happens if your control isn’t good over a long period? Well, to name a few things that happen to those who badly manage their blood sugar levels – blindness, loss of limbs, damage of nerve endings and, ultimately, premature death. So yeah, not great.
Yet, apparently, this better device isn’t deemed useful enough for the NHS to pay an extra £30 a month to offer it as standard treatment for diabetes. I just don’t get it. The solution is that I make sure that my control is worse for a few months, and THEN I would be approved for the better device under the NHS. I’m obviously not going to do this, but it would actually benefit me financially to do so… No consideration is given to the fact that my control is as good as it is BECAUSE I HAVE THIS DEVICE. It’s so bloody frustrating! I understand budget constraints are tough and that I am lucky to be paying so little for a lot of the service that I receive, but some aspects of the service are illogical and don’t incentivise the right things. By not offering this type of device as a standard service, the health service probably incurs higher costs later on due to patients having to be admitted to the hospital, operations to have limbs removed and whatever else they have to do due to poor management of blood sugar levels. Anyway…
Adjusting the Basal Dosage
Injecting the additional basal insulin seems to be working so far. My glucose levels are more stable at night again, so that is good. The diabetes nurses are talking about putting me on a different type of long-lasting insulin, so I’m not sure if that will throw things off again or not, but they have told me to stick with what I am doing for now and that we’ll review again soon. Damn diabetes – never letting me get too comfortable; as soon as I feel like I am, it throws a new spanner in the works.
I imagine diabetes to be a cruel dictator, kicking back with a cigar in its mouth and its feet up on the desk, making some little tweak to the way that my body is handling insulin, and then laughing as I panic for 5 days, pulling what little hair I have out throughout the night as I try and get my glucose levels to drop from 19 back to 7; watching me complain that I don’t understand anything anymore and feeling like it’ll never return to normal, only for it to all be OK again a few days later… Another flare-up of the melodramatic tendency I have to view any change as a catastrophic, life-ending phenomenon, only to feel embarrassed a few weeks later at how impulsive my reaction was, as I think back to how quickly my attitude descends into pure chaos. I’m always either feeling like an untouchable expert in diabetes or a clueless half-wit, and never in between.
Luckily, I am now on the waiting list to go on the DAFNE course, which is a week-long course that teaches you about managing diabetes. I’ll be able to say more about it after I’ve done it because I don’t know too much about it right now, but I’ve read good things. It’ll be good to have some sort of formal training in managing diabetes, as I still feel awkward when I get asked about things like my current injection ratios (how many units of insulin you inject for every x grams of carbs in a meal)… I really don’t have a formal system for calculating it all currently, I just go off previous experience. The imposter syndrome is strong in this one. The diabetes dictator has rocked my self-confidence; I wonder what the next issue will be…
I wondered why my statistics showed an unusual spike over the weekend, despite not posting anything until Sunday night. Then I realised that my episode of the Project Purple podcast was released on Friday and that my blog URL is featured on the website, so I deduced that this may have something to do with it. Either that or all of the rain that we’ve been getting in England has been forcing people to sit inside reading cancer blogs rather than enjoying themselves; both are totally plausible explanations. Perhaps it was a combination? Anyway, here is the episode, if you are interested in LISTENING to me moan about cancer for once, as opposed to just reading it. There’s even a video, which is a little terrifying.
I’m even on Spotify now, which means I have fulfilled a lifelong ambition to be an artiste with content on the platform (in my mind, it was going to be an intricately written song which everyone praised as being emotionally deep whilst beautifully composed, but featuring on a podcast about cancer was second on the list). I’ll link both below.
L’appel du Vide is a French phrase which translates to ‘The Call of the Void’. It refers to the tendency we have to entertain self-destructive thoughts, like wanting to jump off a cliff when standing on its face. The phrase doesn’t refer to the act of doing so, but the way that we are inclined to think about doing so when facing such a situation. Another example is the thought of ploughing your car through the barriers at the side of a bridge when driving over it. I frequently experience it when I am waiting for my train to travel into the office in the morning.
The train station has 4 tracks running through it. The outer ones stop at the platforms on either side but the inner ones are for the mainline trains which go between London Bridge and Brighton. I usually get to the station at about 07:03 for my train scheduled at 07:09. Whilst waiting for it, I always see one of the mainline trains fly through on one of the inner rails. There are no barriers sectioning it off.
Sometimes, as I stand there in my morning daze, I think about what everyone would do if I just took a running jump in front of the fast train as it flies through the station. It isn’t because I want to do it, there’s just a fascination with the idea. I wonder what other people on the platform would do, how easy it would be to execute the jump and whether I’d feel anything at all, or whether the rush of adrenaline would be the last thing I ever experience. I wonder if the ‘l’appel du vide’ phenomenon is somewhat related to the negative feelings I get around scan dates…
On Wednesday, I felt my phone ringing in my pocket whilst at work. Upon looking at the screen, I saw the dreaded ‘No Caller ID’, which is almost always the hospital. The woman on the phone told me that she was from The Christie’s imaging department and that they needed to book me in for a scan. Due to it being very busy over the next few weeks, she asked if I was able to attend on Sunday of this week. I was a little flustered but I agreed, always giving precedence to any cancer-centric plans over any non-cancer-centric plans, even if they are last minute. In the hierarchy of needs, cancer care trumps most other things, perhaps even eating. Once you have been admitted to the hospital a few times, you start to realise that not eating is actually encouraged by the medical field in a lot of cases. ‘Null by mouth’ they call it, and it absolutely sucks. It gets written on a little whiteboard next to your bed so you can’t even lie to the person going around the ward offering out hot drinks. You get to watch everyone in the other beds enjoy their morning coffee and toast whilst you aren’t even allowed a cup of water. It’s torturous, but I’ve normally been jacked up on morphine at the time, so I’ve gotten over it.
Once I had agreed to the short-notice appointment, I went about reorganising my diary to fit it in. I realised that I had plans for Saturday that needed to be rearranged, and then realised that there were train strikes on, meaning that I couldn’t get back to my parents for the scan via train. That meant factoring in the 5-hour drive from London too… not too bad but not ideal… Eventually, I managed to figure things out well enough, and it sort of fit into place… well, things were forced into place, but whatever, I had a plan to see my friend earlier on Saturday, then drive home that afternoon ready for the scan today.
At the start of the week, I already had a few symptoms that I was worried about. From one perspective, having a surprise scan flung on me felt helpful, as it would allow me to address any worries I have that these symptoms are alluding to another tumour growing inside my abdomen. On the other hand, it could confirm these worries to be valid, and by confirming them, it also makes them real. Once they’re real, I’m back in the world of dealing with an active cancer again, if dealing with it is even possible anymore. Dealing with it might mean “making peace” with it, to use a euphemism, which isn’t something I want to have to do, if I can avoid it.
The cognitive dissonance at play here is obvious – just because an oncologist hasn’t identified a tumour in your body yet doesn’t mean that it isn’t growing inside of you. Not having a scan doesn’t mean you don’t have cancer. It would be great if that was how the world worked, but it doesn’t. In actual fact, if you have a cancerous tumour, it really is in your interest to have it identified, preferably by someone who dedicates their life to trying to cure people of that type of issue. Still, when it is officially identified is when you officially have to deal with it, which sucks. Notice how foreboding I am being here? Welcome to my head… please don’t slam the door on your way out. Thanks.
The recent symptoms have been more of the same really, but they’ve got more intense. I’ve started to get the exact same tightness in my abdomen that I was originally trying to get diagnosed when I first realised that something was wrong with my body. It’s especially bad in the mornings which was also a key characteristic of it before. This isn’t the first time that I’ve had this problem since I was first diagnosed, and I even asked the surgeon about it after my operation as I was experiencing it a lot then. He reassured me that whereas before I had problems because of a tumour, now I will have them because of the trauma from major surgery, and that they may never go away.
Although this should bring me some comfort, this symptom mostly went away for half a year. Now it’s back and feeling worse than it has since it originally surfaced, which is disconcerting. No matter how many times I remind myself of what the surgeon said, it doesn’t fully satisfy me. If my experience over the past few years has taught me anything, it is that we know our own bodies better than anyone. Why is this feeling resurfacing now, if nothing has caused it? I’m sure there are other things that could be causing it, but I’m also pretty sure that it could be a tumour, so I can really go round and round in circles with myself on the topic forever. And believe me, I do. Round and round and round and round and round. The only positive is that it makes getting out of bed in the morning very easy, as the pain seems to lessen when I get up. If I stay in bed, I just worry about it, then worry about everything else, and then feel terrified that I’m going to die. I’d rather drink coffee on the sofa than contemplate how painful my inevitable death from cancer will be.
Then there is this random stabbing pain that I’ve started getting in the left side of my abdomen… Guess what else was in the left side of my abdomen? My pancreas! What was on my pancreas? My big fat Greekwedding pancreatic tumour! It’s hard to shake it off, especially when the oncologist told me that the most likely place the cancer will return is on the lymph nodes in the area around where the tumour was. Of course, that doesn’t mean that it would feel like a stabbing pain in that area, and I spent a few months after I got the all-clear worrying that my neck was swollen, only to find out that this wouldn’t be a symptom of my type of cancer returning, which made me feel nice and stupid. When I say I was worrying about it, I was seriously worrying about it. I kept getting paranoid that my neck hurt, which it probably did, but more from me tensing it due to me worrying about it all of the time. This should serve as proof that I have no idea what I’m talking about, need to stop generalising that everything means I have cancer again, and should just get on with my life and be grateful that I’m in this situation at all. It isn’t so easy, though. There’s also the issue of occasionally shitting an alarming amount of blood, but that’s totally fine, right? Yeah, I’m sure that’s totally normal. Cool. Anyway.
L’appel du vide really summarises my feelings towards my cancer at the minute. I feel like I am being pulled into a void. When I hadn’t had a successful operation and things weren’t looking good for me, I feel like I had some extra level that I could go to which comforted me. There was an element of knowing that I might not have too long left and that I need to do all I can to enjoy it which felt empowering. Those feelings of helplessness don’t just dissipate overnight because treatment went better for me than anyone was expecting it to. Instead, those feelings seem to float about in the ether, binding to any insecurities I feel and infinitely multiplying them. I’m still not in a position where I believe that things are actually going to end well for me, I’m just waiting for them to go wrong. The fact that I can’t put a timeline on when that will happen anymore just makes it all the more daunting.
Now that I’ve had another scan today, the same thing is happening. I’m certain that they’ll come back and it’ll be bad news. But even if that doesn’t happen and they’re all clear again, I feel like I’ll just be letting out a sigh of relief that I’ve got away for another few months before the next scan, where THEN they’ll surely be negative. I even started entertaining the thought that even if the scan is clear, it must be because the tumour hasn’t grown enough to be picked up by it yet. Then I am convinced that WHEN it comes back, I’ll be dead in a matter of weeks; all I have backing that up are a few stories I’ve read on the internet, but every cancer case is notoriously different. I’m an expert at being an inexplicable expert on cancer, apparently, considering I know nothing about it whatsoever, other than the experiences I’ve been through.
I need to just stop thinking about it so much, but it’s impossible to do. Stopping yourself from thinking about it is almost more difficult than just letting the thoughts come when they need to, and doing what you can to deal with them. It is so easy to read about someone dying from cancer, seeing that they fought it for a year, 2 years, 5 years etc, but that doesn’t do any justice to what they went through. Every minute of every day it is there, whether it is an explicit symptom that they’re suffering with or just the knowledge that they have cancer. Every. Fucking. Minute. How do you counter that?
I had a dream that I was locked in a room, and all I could hear was this incredibly loud screaming, but I couldn’t stop it or get away from it. I woke up and my blood sugar was 18.9, which is insanely high, and I had a horrible pain in my stomach. It all felt relentless, and then I spent an hour wondering what would even kill me if I died of pancreatic cancer. Would I stop eating? Would my body just give up? They’re all questions I don’t want to answer, but I find myself falling into the details of them anyway. Perhaps it is necessary to feel these things and navigate these thoughts if that is what is going on in my life, but it can all feel so counterproductive and unhelpful.
So, the scan was fine but I don’t know when I’ll get the results as I haven’t received an appointment yet. I’m sure in the meantime I’ll find ways to perpetuate the symptoms and reassure myself that everything means I have cancer again, yet also feel disproportionately invincible on the days when I do feel good. Whether it is the l’appel du vide phenomenon or not, it is nice to read about something that I have thought about a lot in life. Cancer is, after all, a huge void, mercilessly dragging millions of people into it every year and decimating their lives. Whether standing on a real cliff or a metaphorical one in the form of cancer, it is difficult to not entertain thoughts of falling over the edge. In those thoughts, there probably is some relief, and I know that writing this has provided me with some catharsis, but I wonder how others deal with this. Some people just have an unrelenting positivity about life – what a gift that must be!
I remember reading a theory about why time seems to go faster as we get older. When we’re younger, we have less experience of the world and of the many situations we find ourselves in as we traverse it. Many situations feel novel, and we are forced to engage our minds and figure out how to navigate them. In doing so, we focus on things and give them our full attention. As we get older, we find ourselves repeating the same patterns. This repetition allows us to go about our life in more of an autopilot mode. Due to this, we do not need to focus so much, falling into similar routines with confidence. This is beneficial to us as it allows us to spend less time and energy focusing on ‘standard’ problems, allowing us to move through them with less stress and by exerting less mental energy. Another consequence of this is that time passes by faster as we find ourselves engaging less and less with the life we are living. And on that note, how on earth has it been a year since my operation?
A year ago yesterday, July 15th 2022, was my operation date. There was a heatwave in the UK when I went into hospital. I remember reading the news as I sat in the waiting room, with the article claiming it could get as hot as 40 degrees. I thought that the heat wave might make being in the hospital even more difficult but I overestimated how aware of my surroundings I would be for the next few weeks. Perhaps during that period in the hospital, I might have felt more aware of my surroundings than I believe I was now. Perhaps I was aware of my surroundings and I am doing myself a disservice by stating that I wasn’t, but I don’t remember feeling hot at any point, so I can’t have been very aware of them. It nearly hit 40 degrees in Manchester and I don’t remember complaining about it, but I’m sure I did.
As I sat in that waiting room, I was surprised by the number of people who were also there at 6:00am. It took me a few minutes to realise that everyone who was there was actually waiting to go into surgery too. It feels like a group of people waiting to go over the top in World War 1 but with next to no camaraderie; we barely looked at each other. When my name was first called, the nerves really kicked in. I was glad that I wouldn’t have to wait in the room for longer, though. As the nurse shouted “Group 1” and immediately said my name, I knew that they were preparing for this to take a while. The surgeon had told me it would probably take a while, but he never estimated anywhere near to the epic figure of 14 hours which I ended up being in surgery for. He had also not mentioned anything about a total pancreatectomy; I didn’t realise it was even possible until I woke up and was told they’d taken my whole pancreas, alongside a shopping list of other organs.
The immediate recovery was brutal. A lot of people who have had major surgery for cancer will tell you beforehand that it isn’t as bad as the chemotherapy, but I don’t feel like that. It is really hard to come back from a surgery like this. There’s a lot of pain and a lot of experiences, which are frankly life-altering, that seem to come hand-in-hand with something as complex as a total pancreatectomy.
I suffered an episode of Delirium during the recovery in hospital, where I convinced myself that the medical team had used me as an experiment to see what happens if you remove someone’s pancreas. During that episode, I demanded that I be transferred to another hospital. It then developed into me believing that I had ostracised myself from my family by kicking off in the way I had, then the treatment team, then society in general, until I finally believed that I was going to be left to die in a prison cell. All of this was happening inside of my brain whilst I ran up and down the ward being chased by medical staff and security, and with alarms going off everywhere. I don’t remember loads of the detail, only my brother crying, my wife trying to convince me to let them inject me with something, and I remember seeing blood dripping from the various places around my body where I had ripped the lines out. That was just an episode, though. The trauma might live on in my head, but I woke up the next day (after being sedated by the medical staff the day before) confused but understanding that I was wrong the day before, and that I’d fallen down a mental slope into a strange place. None of the staff held it against me at all, which genuinely surprised me. When I woke up to Anna, I was surprised she still wanted to talk to me at all. It was a single lapse which I had to move on from; the overall impact from the surgery has been very different.
Whereas the episode of delirium was a single event which I struggle to relate to now, the recovery from the surgery is a long, difficult process. Things as trivial as having to use a commode with the assistance of a nurse are humiliating as a male in his 20s – I never expected that I’d have to do something like that in this stage of my life. Other things which seem trivial on paper were also difficult… I was constantly worried about what I was eating because of the diabetes (when I already didn’t feel like eating because of the pain) and I was adjusting to the huge wound across my stomach, which constantly pulled and hurt. All of it is demoralising in different ways.
There were times in the hospital where I remember feeling like things would never get better. Even after leaving the hospital, it took a long time for those feelings to go. In some ways, I still experience many feelings of helplessness over how things have gone, but they are less severe. Everyone seems to assume that the mere fact someone has survived something like cancer means they should be ecstatic with their life, but it is impossible to feel like that all of the time. I’ve sacrificed a lot to get to where I am and although I’d do it all again, I still have to acknowledge this fact – none of this is a miracle. It took a team of extremely experienced surgeons, nurses and doctors, as well as an incredibly strong network of friends and family to get this far, and that network still has to put in a lot of work to this day. It also took an incredible amount of personal perseverance – I’ve been to the very depths of my own emotional and physical capabilities fighting this, and I still find myself being dragged there weekly, if not daily.
It isn’t actually the diabetes or the cancer or the surgery that causes those feelings for me now, it is the constant problem of feeling sick after eating, the digestion issues (which are an every-occurring problem) and the difficulty that comes with trying to acclimatise back to ‘normal’ life. I’ve had so many experiences where I am in a bar or at a restaurant and I find myself looking around me and feeling like I’m an alien. It is a stupid way to feel, as if I am the only one in the room who could have possibly suffered from such trauma, which I know isn’t true, but it is isolating nonetheless.
Yet, despite so many difficulties, I have felt a quality of life come back that was perhaps unimaginable this time a year ago. The recovery from surgery took a long time for me, and I had to go in and out of hospital a lot in the first 6 months. There were times when I genuinely wondered if it was all worth it or if I would have been better off just living out my days without having had such a major and life-changing operation. I never feel like that anymore, and things have gotten much better for me. My advice to anyone who is facing a similar surgery, whether it is a Whipple or a total pancreatectomy (assuming that the Whipple has a similar recovery arc and comes with similar digestive issues), is to be patient. The recovery is long, difficult and painful, and some of the symptoms don’t really go away. Eventually, time plays its part and it is difficult to remember what it was like before anyway. Similar to when I gave up eating meat years ago and stopped looking at the meat options in restaurants, I now look at people who eat meals without taking creon or injecting insulin as just different to me; I don’t envy them or wish things were that way for me, I just get on with the things I have to do.
Some of that adaptation requires acceptance that things have changed. Personally, I think adjusting your diet is a must, even though all of the dieticians that I have been allocated tend to focus on gaining weight. Gaining weight becomes very difficult when you cannot naturally break down fat. Also, eating enough to sustainably gain weight becomes difficult because eating a lot, or eating things which are too fatty, causes any digestion issues to flare up more easily. If I eat a big meal these days, I feel horrible afterwards. My stomach aches, I feel sick, I struggle to walk without getting nauseous, I don’t sleep well and sometimes it just outright makes me vomit. These are just some of the symptoms, I won’t dive too deeply into the others…
Adapting one’s diet to include more legumes, pulses and beans is a really good way to get a good amount of protein in, whilst also eating things which are easy to digest and good for the body. If you’re also diabetic, they are generally low GI, meaning that they cause your blood sugar to spike less (although I find that sometimes this can be difficult to manage with insulin because I am more used to dealing with other foods which do cause it to spike, so I end up either over-injecting, or trying to split my insulin dose).
And the last point nicely highlights another huge adjustment area – being diabetic. If you have the benefit of knowing that the surgery you will be having is a total pancreatectomy beforehand, you will have time to do research on being diabetic. I woke up to the news that they had taken my entire pancreas, and although I was warned that diabetes is something which can occur after pancreatic surgery, I hadn’t been warned that this was likely in my case. Without any pancreas in the body, the chance of diabetes jumps to a mere 100% certainty… Without the organ which produces the insulin, you’re going to struggle to create insulin – it ain’t rocket science.
For the first week or so, the nursing staff helped me regulate my blood sugar with the help of a machine, but then the staff started to encourage me to try and manage it myself with their help. Some of the help I got early on was questionable. I was being told to inject a blanket 7 units with every meal, which is a really strange approach to managing diabetes, but I guess they have to get you to start somewhere. It just doesn’t make sense because even if I eat the same meal, I do not necessarily inject the same amount of insulin. There are so many factors. Just injecting 7 units (which, by the way, is a lot of insulin) for any meal is a very bad way of managing your glucose levels, so it isn’t setting the patient on the best path. The hospital did also give me orange juice with every meal, though, which is also bad practice. Nowadays I’d be delighted as I’d keep them in my satellite store for when my blood sugar drops, but I didn’t have a clue what to do at the time. I just knew that juice was bad an full of sugar, so I stayed away from. it
Due to the trauma from the operation, the body will process insulin very strangely for a long time. For me, I couldn’t manage it properly for at least 6 months, partially because I didn’t understand how to, but also because my body would use insulin totally differently day to day. One day I would inject barely any insulin all day and still find my blood glucose levels diving too low, whereas the next I would be injecting more and more, but my levels just wouldn’t come down. It was an incredibly stressful time, and I had at least 2 minor breakdowns. At one point, I was shouting at Anna asking why no one was helping me, before hitting myself repeatedly in the head with my phone and saying that I want to be knocked out so I don’t have to deal with it. It doesn’t work like that by the way – being knocked out just means someone else has to deal with it, and they probably won’t do as good a job as you, so I’d recommend staying as lucid as possible when managing your blood sugar.
My wife and my brother-in-law planned a meal for me yesterday with a few of my good friends. Until they mentioned that they wanted to do a meal for me to celebrate the anniversary of the operation, I didn’t actually realise the date was coming up. I’m really grateful to them for remembering it for me. It does feel special to be able to celebrate such an occasion, and it helps to remind me how lucky I am to be here. Despite all of the limitations that come with a huge surgery like this, it has still allowed me to find a good quality of life. If I can go out with people I love on a Saturday night, eat half a pizza and have a drink, I can’t be doing too badly, can I? It may make me feel more ill than it used to, and I may feel exhausted after doing it, but I can still do it. I also went out on Friday night to see a band I love with a few people that I love, so it’s been a really good weekend overall.
Yet, for all the good things I have, I still wrestle with a lot of grievances about how things are. I’m still not used to how fatigued I feel all of the time. I want my body to do better, to allow me to do more. I’m finding that I can’t spend huge amounts of time in the kitchen cooking and baking because it tires me out too much, forcing me to take short breaks where I have to sit down. If I go out to eat or to a museum, I worry that I’ll start feeling ill with only a public bathroom to retreat into, and they aren’t spaces that you want to rely on to claw yourself back to health… But it all manages to work somehow. Time’s script continues to be written around us, despite it seeming totally illegible in the moment. I only seem to gain any perspective on a situation when I am reflecting on it, which is why posts like this are beneficial, though I wonder if they add much value to someone else who is going through something similar. I don’t know how unique my experience is; it is difficult to find people who have been through it all. It just doesn’t seem to be common.
So, although having a total pancreatectomy has changed my life a lot, I am finding more and more that there is still plenty to enjoy on the other side of it. It isn’t an easy thing to experience, and the recovery is seriously tough, even ignoring the substantial changes the surgery permanently forces on your body, but there is plenty of light at the end of the tunnel. I’ve recently spoken to someone who was due to have the same operation, so there are obviously people out there who are having it, but those people seem few and far between. Hopefully with the development of new treatments for cancer, operations like this won’t be necessary anymore, but until that is a reality, I’m all for them taking place. If it allows someone like me to go out with their friends, eat pizza, and boast about being cancer free, it’s got to be worthwhile. Let’s hope I’m around to write a 2-year review next year!
In general, I am a supporter of being in denial. Not the type of denial that allows one to do something evil only to deny it was you, or even to deny that what you did was bad, but the type of denial which allows you to get through life with a little less guilt. The sort of denial that allows you to believe you did better in a job interview than you did in reality, protecting your ego just enough to allow you to do another one without breaking down into tears. A healthy dose of denial to help bat away the crushing existentialism of waking up for work every day. The type that helps us forget that we won’t be able to retire until we’re over 80 years old, where we’re forced to play the lottery every week to try and scrape together a more sizeable income because the unregulated banks spent all of the money in the pension pot.
Denial is actually an essential ingredient in the life of a cancer survivor. Without denial, I’d spend my life in a tent outside of A&E, making the daily commute inside the building to inquire about every pain, ache and fear that my broken body seems to flare up with each day. There’s an abundance of them, believe me. Plausible deniability is the only plausible option sometimes. I’ve gotten good at mediating with my own internal doom monologue. I’ll adopt trickery to challenge my self-sabotaging tendencies. “Well, if cancer was going to kill me, it had a good opportunity to, but it didn’t.” My mood yo-yos from unbreakable confidence in my abilities as a cancer survivor to absolute terror at my prospects as one. I am actually well aware that I’m not a seasoned cancer survivor, but it feels good to deny the suggestions that it was all down to good luck and a very competent team who were treating me, and instead believe it is due to some innate skill I have to fight cancer… when I’m feeling good about myself at least. Perhaps I should fight a bear next time I am feeling like a world-beating cancer killer; that would put my self-confidence in my abilities as a fighter to the test. I’m pretty sure bears beat cancer in terms of strength, but maybe not in persistence.
There should be a concept of white-denies in English, so long as it doesn’t get misconstrued as some sinister extremist ideology, which it might. In my mind, they would be similar to white lies – things that we say that are technically lies but are over trivial matters, where lying is more beneficial, or where telling the truth is unnecessarily hurtful. For example, if a random person at a party asks me why I’m not drinking that evening and I reply that I am not feeling well, they would probably accept this reason and move on. In actual fact, I just didn’t want to drink and feel totally fine. Has this lie hurt anyone? No. Has it carved out an easy path through the conversation? I’d hope so. It’s a lie, but a cute little white one. Whereas if I said to them it was “because I had shit loads of cancer a year ago, have barely survived it, and am now scared of anything that could be damaging to my health,” they may be a little intimidated. It’s a little bit too much to put that on a random person at a party. Most people go to parties to have fun, not be a random man’s agony aunt.
In that vein, an example of a white-deny could be as follows… I am sitting on a train and a person on crutches gets on. I’m sitting in a seat which says ‘Priority’ on it, so I should clearly move for this person, but I am deep in the middle of watching a really important video on Youtube about how the hulls of large cargo ships are cleaned whilst the ships are still floating on the ocean (my most recent ‘Youtube Rampage’ has been watching videos on oceanic engineering challenges and how human’s overcome them – it is enthralling stuff, honestly). As a result, I don’t see this person get onto the train. Someone sitting across from me stands up and offers them the seat. The commotion around me causes me to look away from my deeply exciting and interesting video, and I realise that someone has offered up their seat in lieu of me doing so to this person struggling with crutches. I feel deeply bad about this, but tell myself that I would have given up my seat had I realised what was going on earlier. I deny the idea that I am the type of person who would force this responsibility on someone else, as that would make me feel like a bad person… and I think that I would have given up my seat had I realised, so it makes sense to deny a version of events where I purposefully didn’t look up to abscond myself from the responsibilities which I accepted by sitting in the priority seat. This hasn’t happened by the way, just in case you’re wondering. I always give up my seat… so long as I notice a need to…
Today, on the short 5-minute walk from the train station to my house after work, I saw a man decanting a can of strong beer into a water bottle whilst holding a cigarette in his mouth with just his lips. He was pulling on it and exhaling the smoke without touching it with either hand. If that wasn’t impressive enough, he was also shouting abuse at people walking past him, saying something along the lines of “All of you can fuck off.” Although it probably shouldn’t have been funny to me, I just couldn’t help but laugh to myself. I didn’t understand why he was decanting a beer into a reusable water flask, what his issue with the world was, and why he was so outwardly aggressive about it. I had started writing this post whilst on the train, so the subject of denial was heavy on my mind. I started evaluating the situation in my head and thinking about that man’s level of denial about his actions and their impact on the world around him.
The situation made me think about deniability, and how deep someone must be in it to behave like this without having some instinctive repulsion to doing so. It isn’t the decanting beer into a water bottle necessarily, or the no-handed smoking of the cigarette, but the abuse he was throwing at random people who were walking past. I just didn’t understand any of it at all. I’m sure he doesn’t think that any of it is rational, acceptable behaviour, but he must feel like it is warranted, for some reason. How deep is he in deniability to think that random strangers walking past him deserve to be hit with a barrage of abuse? Maybe he isn’t in denial at all, and he just doesn’t care. I’m not quite at the ‘shouting at random people’ stage in my grief, but I’m closer to it than I was a few years ago, so I can sympathise a bit. One day maybe I’ll be able to smoke a cigarette with no hands and tell a stranger to fuck off without feeling bad about it. I’m not sure I want that for myself, but it’s a strangely entertaining thought.
Denial has been failing me these past few days. I’ve felt especially tired out and more exposed by the niggles I have around my body. A few times after eating recently, I’ve felt strange. Sometimes it is a fairly straightforward sick feeling, other times it is a sort of heavy feeling around my stomach. I get a bit of a stabbing pain in my groin too, and earlier today I felt a shooting pain going up my arm and into my shoulder. I’ve also been feeling really fatigued, struggling to stay awake through the day and needing to sleep a lot more than usual. The whole thing has left me feeling hazy, and I’ve been fantasising about the scarier parts of post-cancer life… a constant obsession with imaging how the world will work without me; my wife crying in our bed whilst surrounded by our possessions, how far outside of my friendship circle the grief would reach upon hearing the news – whether it is a friend, a friend of a friend, or a friend of a friend of a friend. Who would be the break in the grief chain, the person who sort of shrugs and goes “that sucks.” My response to all of this is to blunt my moods, constantly operating with a dampened sense of being; struggling to fully enjoy anything positive, and soaking up everything negative. It’s tiring.
It’s given me a new-found respect for denial for without denial, my entire life would be like this. Many of these physical symptoms that I am experiencing are actually common in my life these days, but I usually handle them better than I have been these past few days. A line needs to be drawn – one which allows me to take things seriously where required, but one that also allows me to accept that a level of discomfort is normal for me now, after such a big operation and so much chemotherapy.
I have no idea how to draw such a line, and the generic tips that the oncology team gave me for looking out for symptoms don’t really help. “If you consistently feel sick after eating, seek help,” they said… “If you feel extreme fatigue, or notice your energy levels have dropped, get in contact with us.” I’d spend my life at A&E if these tips were anything to go off. Instead, I have to learn to embrace the denial in a way that lets me proceed with my life without getting tangled up in every feeling. Fantasising about what the world would be like without you is a depressing affair, for myself and the ones unlucky enough to be around me through such periods. It also feels incredibly narcissistic to focus on these things, but it is difficult to not for some reason.
And with this post, I have broken the pact that I made to myself to always keep these posts lighthearted, and try to disconnect them from my experience of cancer as much as possible. I guess I need to utilise my powers of denial to counteract the feeling that I’ve let myself down with it. It’ll be good practice at least – my denial powers are starting to fail me, so they obviously haven’t been receiving enough training. If I can start flexing my deniability muscles in aid of rejecting the idea that I’ve failed at keeping these posts lighthearted, perhaps I can then ignore the issues I’ve been having and get back to writing things that are fun to read. Let’s see how that goes…
Ebb and Flow 