Waitin’ Round to Die; Anticipating More Scan Results

The Road to Recovery

I tried to kill the pain, I bought some wine and hopped a train
Seemed easier than just waitin’ round to die

Townes Van Zandt is widely regarded as a veteran of American songwriting. I don’t listen to a wide variety of his music, but I’ve loved ‘Waiting Around to Die’ since I first heard it years ago. I remember being taken in by the finger-picked guitar and grimy lyrics. It is one of those songs where the whole is greater than the sum of its parts. You can learn and play the main riff on your acoustic guitar, but you can’t make it sound as good as it does on the recording for some reason. I feel similarly about Bob Dylan’s song ‘Don’t Think Twice, It’s Alright’. That song is also primarily made up of a picked acoustic guitar pattern and a vocal, and is equally as difficult to play to the standard of the recording. Both songs are tantalising in their delivery.

One of the first things I did after hearing the song was looked into the background of the artist. The lyrics in the song are so painful that I wondered just what went on in his life that made him write such heart-wrenching words. I think the Wikipedia page dedicated to him best summarises his ills under the ‘Personal Life’ section – ‘Relationships’, ‘Addiction’, ‘Death’. He was married several times, struggled with addiction throughout his life, and, if the lyrics to Waiting Around to Die allude to anything, seemed to have an unhealthy fixation on death.

The song is so poignant and powerful that I remember seeing a live video of him performing the song, whilst a man watching in the background sat crying through the performance. It made me feel a little inhuman, and like I lacked empathy. The song evokes quite a different reaction from me. I find myself listening to it sometimes to remind myself that things just aren’t that bad. “At least I’m not feeling negative enough to write ‘Waiting Around to Die’,” I’d think to myself on those days where I find myself struggling. If I ever think I am at a point I could write a song like that, I would be very worried about myself. It is so grim in its outlook that it almost paints a caricature of just how painful life can be, and how downtrodden one may feel as a result of it. Although it provides the right environment for a fantastic song, it doesn’t seem to provide the conditions for a healthy and happy life.

One time I will agree that I feel like I am waiting around to die, though, is when I have to wait for scan results. The next set of scan results are particularly important as they are the ones which will vindicate me of all cancer treatment moving forward, should they come back clear. If the news tomorrow at the 14:00 meeting at the hospital is that there are no signs of cancer, I will be hospital appointment-less (not yet a term recognised by the Oxford English Dictionary) for the first time since being diagnosed in November 2021. It will also be the first time that I will not have any more treatment on the horizon and will be considered ‘cancer free’ (also known as ‘Under Surveillance’, but I prefer the phrase ‘Cancer Free’).

Today I went to do the pre-results meeting blood test. I must admit, I had a spring in my step. I’m trying my best not to assume that the scan will be clear, but I can’t help but fall victim to the prospect of hope. After a really tough month of treatment, I am finally feeling my health start to improve again. My head isn’t so cloudy in the mornings, I am managing to eat without feeling sick most of the time, and I’m finally starting to go on daily walks again; I’m having to build the distance up slowly, but am managing to comfortably do 30 minutes most days. It is crazy that this is the standard of fitness I now measure myself by, considering I used to frequently run 50 miles in an average week, but that emphasises the toll that cancer treatment has on your body. I’m probably still recovering from the surgery in many ways, and my blood sugar occasionally has its days where it throws all of its toys out of the pram and decides to be a nuisance all day, constantly going high or low, and refusing to get in line.

Despite reminding myself that there is no certainty that the scan results will be clear, I walked into the hospital feeling like I was exhausting a tickbox exercise more than I was undergoing something determining my fate. The signs are all pointing in the right direction – I had barely sat down in the waiting room after checking in at reception before my name appeared on the screen, summoning me into the blood room. As it popped up, I looked around me to make sure no other Daniel James Godley’s were standing up. It was just me. I made my way down the white corridor and knocked on the door.

One of my favourite nurses opened it, much to my delight. When you have had approximately 4 million blood tests, you start to understand the difference between a ‘good’ one and a ‘bad’ one. The good ones entail an uncomfortable prick of the skin, a minute of relative discomfort followed by a small shudder as you feel the needle being pulled out and replaced by cotton wool being pressed against your skin. The bad ones entail a wrench of pain as the needle is pushed too deeply into the arm, followed by a minute of gritting your teeth as an unsteady hand vibrates the needle, switching between the few vials of blood used during the extraction, followed by a twinge of pain as the needle is jolted back out. The good ones don’t leave much of a mark; the bad ones can leave a deep bruise for as long as a week, and can even leave your arm hurting when you fully extend it. One time I could barely move my arm for 3 days because it hurt so much after a particularly bad blood test. This nurse was firmly in the ‘good’ category, which makes the whole experience far more pleasant.

The deed was over quickly and with relative ease. As I sat there holding the cotton wool on my arm to stop the bleeding, another one of the nurses came in, who I also had a good relationship with. She had counselled me a few weeks earlier as I sat with my head in my hands during treatment, complaining that I couldn’t do it anymore and that I was feeling too overwhelmed. She had spent a good 10 minutes sitting next to me, encouraging me to fight on and reminding me of all the good things in my life – my wife, my puppy and my new found love for baking; the nurses particularly enjoyed the spoils of that last one.

“Dan! How are you doing? Are you feeling better?” She asked, as she picked up a few vials of blood and put them into bags.

“Much better thank you. I’m finally starting to recover from the treatment,” I responded. I then made reference to the blood nurse being one of my favourites. During my response, I said what I thought was the blood nurse’s name, which I immediately regretted, as I got a streak of insecurity in my head as the word came out of my mouth.

“Was her name ‘Aileen’?” I thought to myself, as I said ‘Aileen’. Something didn’t feel right about it. Her name is actually Elaine, which I confirmed by looking at her name badge in that exact second as I uttered the wrong name, so I wasn’t far off, but I still felt horrifically embarrassed. This particular nurse had asked me how my son was two weeks earlier, and I had to tell her that I don’t have a son, so that does make me feel a little better. No one mentioned that I had gotten her name wrong in this situation, though, and I wondered whether to make a joke of it. The moment had passed, and the conversation quickly moved on. It seems we are drawn 1 – 1 on awkward social faux pas – I got her name slightly wrong and she thought I had a son. Luckily, this should be the last blood test I have to do for a few months, so she won’t get the opportunity to punish me for a while. Hopefully, by then, she will have forgotten.

Now, I have a long 24 hours of waiting before I find out the full scan results. It is always painful being at the hospital waiting for scan results. The oncologists at The Christie are overprescribed with the number of patients they have, and there are almost always significant delays with the face to face appointments. As a result, you arrive for a meeting at 14:00, but frequently find yourself not being called into a room for at least an hour, if not longer. Then, you are taken into a room where a nurse takes your observations – blood pressure, heartbeat, height, weight – before being asked to wait for the doctor. That can entail another hour of waiting, only in a private room. Every time you hear footsteps approaching the door, your breath deepens and your heart sits in your mouth. Then you watch as a person walks past the room, and you let out a big gasp of air, before repeating the whole process again and again and again before you finally hear that fateful knock. It is painful – I’m not sure I’ll ever get used to it.

Perhaps the universe was trying to send me a message when Waiting Around to Die came on one of my Spotify playlists this morning as I made my way to the hospital to do bloods. I sat listening to the lyrics, and it oddly made me smile. I thought about myself waiting around at the hospital, straining over every minute that my name didn’t appear on the screen, summoning me into the office to learn of my fate. I thought about going through the whole process tomorrow when so much is at stake. If I am clear of any signs of cancer tomorrow, I can start to plan my move back to London, start seeing friends and start making concrete plans again.

There are so many simple things in life that we take for granted when we are healthy. Over the past year, I’ve barely been able to plan beyond the next 7 days with any certainty. There is always the chance that you’ll have a bad day or week on the chemotherapy, or that a scan will reveal some new devastating truth, which you’ll then have to contend with; whether that means more treatment, or that no treatment will suffice to save you, it carries with it an enormous weight. To have that weight lifted seems almost… unfathomable. I cannot wait to finally fathom it.

Of course, then I’ll have to attend these scans every 3 months for the first 2 years. After that, it’ll change to every 6 months. Then, if I make it all the way to 5 years without a reoccurance, it will change to once a year. That is a fairly daunting prospect, but I’ll have plenty of life to keep me busy in between. That is all we can really do with our free time – look to stay busy, finding things that best occupy and satisfy us. I’ve been writing a few special pieces recently that I’ve been really enjoying; I’m going to keep writing and see where it takes me – hopefully, as my energy grows and I feel stronger, I’ll find even more energy to put into it.

Still, I have another 24 hours of waiting to go before I find out what the scan results say. I’m getting ahead of myself and assuming the scan results will be positive again… Perhaps I will try and cook something nice tonight, or bake something to give to the oncologists tomorrow – they can’t give me bad news if I bribe them, can they? Whatever I decide to do, I need to do something. It is all better than waiting around to die – right?

Mouth Ulcers and The End of Chemotherapy

The Chemotherapy Diaries

Bedbound and Down

I thought I’d left my abusive relationship with mouth ulcers in the past… the mouth ulcers had another thing in mind. They decided to come back in force and ruin my victory lap week with the mop-up treatment. Rather than being excited about reaching the end of my journey with chemotherapy, I spent the past week in bed, struggling to eat, and even struggling to talk.

The issues started last week on Monday. It seems strange how they form, and I’m not sure if they form differently on chemotherapy, or if I just haven’t had enough in my life prior to being on treatment for cancer to know, but it seems to be different to how I remember it. I know I’m about to get mouth ulcers because my mouth just starts feeling strangely sensitive. All of a sudden, a hint of paprika in a tomato sauce results in my cheeks and tongue feeling hot and irritable. I’ll sit there after the mildest of chilli meals and find my mouth pulsating with discomfort.

“I think more mouth ulcers are coming,” I announce to my wife, with a combination of bitter amusement and familiar disdain. The sentence sounds like a naive plot thread in a horror movie, where the protagonist announces that they’re happy that they live in the safest town in their country, minutes before a gang of weapon-wielding maniacs descend on it with masks on and a vengeance against middle-class bullshitery. In my case, I use the word ‘think‘ as a sign of optimism that perhaps the ulcers won’t materialise, and that my mouth may just be a little sensitive that day. Usually, I wake up the next day to find that optimism to be entirely unfounded, and the ulcers have spread themselves throughout my mouth in the most awkward and painful of places.

This time was particularly bad, though. I couldn’t even drink water from Tuesday to Friday without it causing my mouth to sting so intensely that I’d question whether the government had replaced the local water source with hydrochloric acid. It was Thursday night that I decided to finally call The Christie hotline and report the problem to my oncology team. I was still taking the chemotherapy tablets twice a day at this point and had been for my last infusion on the Tuesday, when it had all started to kick off, so the chemotherapy was rife in my system.

Before the final infusion, I reported the problem to my nurse during the standard pre-treatment survey. She had manoeuvred one of the large extendable lights attached to the wall behind the bed into a position to investigate the contents of my mouth.

“Oh, the back of your mouth is very swollen. Your tongue looks very painful too. They are rather excessive, aren’t they?”

“Yeah. I’m struggling to talk because the ones on my tongue are constantly scraping against my teeth towards the back of my mouth. Opening my mouth is hard because the ones at the back of my cheek strain when I do.” You’re probably reading those sentences in too normal a fashion for how I was enunciating my words at this time. Imagine someone with a lisp who, for whatever strange reason, also can’t open their mouth properly, reading the sentence to you. Looking back, it makes me laugh quite a lot, but I didn’t see anyone laughing around me at the time. What a waste of a painfully funny situation. Another rather funny event that occurred during my final infusion was me receiving a foot massage.

I’d had a minor breakdown at treatment during my first session of the final cycle, and the nurse had referred me to the hospital’s Macmillan team. The next week, during session 2, one of their specialists had come to visit me to talk me through techniques to implement when I’m feeling overwhelmed, as well as services that her team can offer to patients. One of these services was a foot massage during treatment, which is said to help lower the effects of nausea, which I was experiencing in abundance during my sessions at the hospital.

It wasn’t actually the treatment itself causing this, but the smell of the ward. I think it has finally happened that I now associate the smell of antiseptic cleaning products with the horrible effects of chemotherapy, and the experiences familiar to me during the delivery of treatment at the hospital. These include, and I apologise in advance for the amount of toilet-based issues listed, but it is the reality of being on chemotherapy: chronic diarrhoea, blood in my faeces, throwing up whilst sitting on the toilet, sweating profusely, the room spinning around whether my eyes are open or not, going white as a sheet, and my extremities freezing solid, so I cannot bend, or even feel them, which is incredibly painful and irritating.

I declined the foot massage that week, stating that it was a nice gesture but that I am nearly at the end of my treatment, and that I’d made it this far without them, so I’d soldier on. The Macmillan representative was so lovely. She encouraged me to accept it and said that it is really therapeutic, but I felt far too English and awkward about the whole thing. Also, my feet are the part of my body that I am most self-conscious of, as I used to run a lot of ultra-marathons, which isn’t usually indicative of nice-looking feet. Mine certainly fall into the category of ‘That guy likes to run marathons’, and I haven’t even run one for well over a year.

But, during my interview at the start of session 3, cycle 3, the Macmillan representative had come back to see me, and it just happened to be during the nurse’s inspection of my mouth.

“Other than the mouth ulcers, have you had any other symptoms that have been bothering you?” the nurse asked.

“I’m still struggling with nausea, and just generally feeling wiped out. I really struggle to get out of bed at the minute, and I barely leave the house at all,” I replied.

The nurse turned to the Macmillan representative and said the following:

“Do you think we can give him a foot massage to try and help his nausea?”

I’d been rumbled. Had these two planned this? What a deviant, awful, lovely pair of people. How dare they assassinate me with their good nature. How am I going to wriggle out of this one?

“That’d be great – are you Ok with that, Dan? I know you weren’t so keen on it last week,” the Macmillan representative said to me.

Both their eyes were locked on mine; I felt the weight of expectation.

“Ok, sure. That’d be lovely. Thank you,” I said, defeated, and still struggling to pronounce my words properly because of the mouth ulcers.

If you are on treatment and are offered a foot massage, I only have one thing to say to you – do it! The Macmillan representative used the electric remote on my chemotherapy chair to elevate my legs straight in front of me, then placed herself at the end of the bed. She put a lovely white towel under my feet and curved the ends of it around each ankle. She then proceeded to cover my feet in ACTUAL OIL, and softly massaged my feet, whilst chatting to me about everything that was getting me down – acknowledging the trauma that I have been through, the difficulty of the cancer that I am fighting against, and how hard it must be to readjust to my present life, compared to my old one.

The whole experience was absolutely wonderful, and it really put into perspective how important the work is that Macmillan do. What an incredible organisation and, in particular, what a wonderful individual she is. I wish I could shout her out by name in this post, but I’m not sure how ethical that would be, so I won’t. I hope this gets back to her somehow so she can read how much I enjoyed the experience, and how grateful I am for it. Anyway, this post has turned far too positive, lets get back to my week of hell with the mouth ulcers.

As I said, I spent Tuesday to Friday mostly in bed, consuming very little in the form of food or water, and struggling to do much more than sulk. Talking was very painful, and no amount of the hospital-issued mouthwash, or Iglu gel that I put on the ulcers to try and relieve them, was doing much to alleviate the issue. I was still taking the chemotherapy tablets throughout this time, but I was feeling incredibly weak and sick, and I decided it had all become too much. I’d taken to sleeping on the bathroom floor a few times during these 3 days as I was getting such bad abdominal pains and bouts of nausea, that I was worried I wouldn’t make it to the toilet in time from my bedroom if I stayed there. A few times, this proved to be a good idea, and I learnt that my favourite place in the upstairs bathroom was assuming the fetal position on a small rug placed in front of the radiator.

One time, I had been rudely woken up by my wife banging on the door, telling me that dinner was ready downstairs. Dinner? Can one not assume the fetal position on the bathroom floor in peace these days? Unbelievable. I can’t eat anyway – what good is dinner to me?

The Christie hotline wanted me to go into the hospital to be reviewed, as they were worried about a few of my symptoms. My temperature was 37.7, which is right on the border of ‘high risk’. A high temperature can be the earliest sign of infection, so patients are advised to regularly check their temperature whilst they are receiving chemotherapy treatment. The advisor was worried that some of my mouth ulcers may be infected. On top of this, the fact that I was struggling to consume liquids, and had been suffering from bad diarrhoea all week, added to their concern.

I was pretty sure that I didn’t have an infection, though. My theory about the high-ish temperature is that I was taking the reading using an oral thermometer and that my tongue and mouth were very swollen, which would probably be skewing the temperature reading. I didn’t feel like I had any symptoms of flu, which usually indicates that the body is struggling with fighting an infection, and none of the ulcers looked infected to me.

It was nearly midnight at this point, and The Christie is nearly an hour away from me. That would mean an hour to get there, a few hours there having blood tests done, and being put on routine fluids, and then another hour back home. If I was genuinely concerned that something bigger was going on, I would have been happy to do this, but I wasn’t convinced that it was. I gently refused and asked if I could arrange to see the GP the following day instead. The representative reluctantly agreed but said that she would call me back an hour later for another temperature reading, and if it remained the same or increased, insisted that I would have to either go to The Christie or to my local A&E to be checked out. The suggestion that I may go to my local A&E over The Chrstie made me giggle.

“If I need to go anywhere, I’ll come to The Christie. I’m not stupid enough to go to my local A&E anymore – I’ve made that mistake a few too many times over the last year.” That thought cheered me up momentarily. Who would voluntarily go to an A&E in the UK? They’re notorious hell-holes where, if you manage to get out within 5 hours of arriving, you feel like you’ve been blessed by the gods. At A&E you are treated like a problem; I’d rather book a plane ticket to be seen at The Christie than drive to an A&E that is 20 minutes away from me. The overall time it would take to resolve the issue would still fall in favour of The Christie anyway, even if it included navigating airport security, sitting through a flight, the awkward bag collection on the other side, then the mandatory coffee stop before leaving the airport. I once sat in A&E throwing up for 9 hours before speaking a single word to an actual doctor, and that was during my recovery from major surgery last year.

An hour later, my temperature was 37.4. Good, it was dropping. She was happy to let me stay at home, so long as I got an appointment the following day.

In the morning, The Christie hotline diligently called me to see how I was getting on. They had been far sharper than I had that morning, as I had had one of my typical chemotherapy mornings, where I could barely move a limb for how bad I felt.

“Hi, Dan. It’s the hotline here – we wanted to confirm that you have an appointment to see the GP today?” The advisor asked me.

I broke out into a thousand excuses, but the central point was – no, I didn’t book an appointment, and it was now 10:30, and all appointment slots will have probably gone. She asked me to try to get one, and then get back to them once I either had an appointment or learnt that I could not get one, so they could help to arrange an alternative.

Lucky for me, I called my GP and explained the situation, and they offered me a slot at 17:00, only available because a patient had cancelled. I assume that this patient had originally accepted the appointment, only to realise that it cut into their Friday night pub time, which had convinced them that whatever was wrong with them really wasn’t that bad and that it is probably normal for men to have dry testicles that are covered in flaky skin. No idea where that came from… you’d think I was projecting, but I promise I’m not… Anyway, I snapped the appointment up but was concerned that the advisor on the hotline would not be on shift anymore by the time I had seen the doctor, so I wouldn’t be able to report back the outcome of the appointment. Rather than proactively do anything about this concern, I returned to my position under my quilt, falling in and out of sleep until the fateful time came to attend the appointment.

The GP looked at my mouth ulcers and confirmed that none of them looked infected, but said he would give me some steroid mouthwash to encourage them to clear up quicker. He then looked at the results of a recent blood test I’d had at the GP, due to some standard screening procedures for diabetic patients, which I am.

“One of your liver functioning tests is rather high – are you a big drinker?” The GP asked.

I sat there stunned for a second before responding, trying not to sound too condescending or annoyed.

“Erm, no. I believe it is due to all the chemotherapy I’ve been on. I have pancreatic cancer.” I couldn’t help but be a little stern in my tone.

“Oh, of course. Sorry,” he responded, before talking to me a little about how the treatment was going, and how long I had left on it. He was a nice guy – it had probably been a long week.

The steroid mouthwash lasted for 5 days and seemed to do very little. My mouth ulcers are still going strong, though I am managing to eat more. Some recipes I’ve taken a particular liking to are overdone pasta with homemade pesto, a mild daal and, of course, soup – a classic ‘I’m ill and everyone should feel sorry for me‘ meal.

On a more positive note, I woke up today feeling better than I have in weeks. Instead of being greeted by a piercing headache and heavy limbs, I woke up at 8:00am and felt… kind of, Ok? I’ve gotten so used to the first feeling that I wake up to being anguish, as if I spent last night downing straight vodka from the bottle before being hit by a double-decker bus, that anything remotely more positive than this feels like a breakthrough.

In the Wet Leg song ‘Ur Mom’, there is a break in the song where the singer sings the following lines:

Okay, I’ve been practising my longest and loudest scream
Okay, here we go
One, two, three

She then proceeds to scream for an impressive amount of time. It is very random, fun, and the sort of tongue-in-cheek thing that you start to expect from their music after listening to a few of their songs (the song ‘Chaise Longue’ is a prime example of their lyrical good humour). I like to think, if I had written the song ‘Ur Mum’, I would have channelled my anger at mouth ulcers whilst producing that scream. It brings me some pleasure to imagine that was her inspiration as I listen to the song, but it almost certainly wasn’t.

So, to finish off this post – fuck you mouth ulcers, and fuck you, chemotherapy. You can both do one forever. I’m hoping that I am done with you for good, but live in trepidation that my oncology team will tell me that I have to resume taking the chemotherapy tablets until the full course is complete, which would mean another 5 days of tablets to come. I’m purposefully avoiding calling the hotline back to tell them that I’ve completed the course of steroid mouthwash given to me by the GP, as I am assuming they will advise me to now continue the course of chemotherapy tablets.

Can I just say “no” at this point? Will 5 more days of pills really stop whatever may happen from happening? I seriously doubt it. It would give my mouth ulcers more opportunity to thrive, though, and they only need half an excuse to kick off a violent party in my mouth. They’re still at it now, even after 5 days of steroid treatment. If anything, I think the steroids just encouraged them.

Who’s side are these oncologists on, anyway? I’m starting to think they’re funded by mouth ulcers.

I’ve told myself that I have to call the hotline this afternoon to talk about whether I have to resume the treatment, like a real adult. It is so hard not to ignore your problems when ignoring them does, kind of, make them go away.

November 8th, 2021

The Road to Recovery

In Jordan, With the Wonderful Bride and Groom

It feels like a lot has happened since I last posted. I’ve been abroad for the first time since before the pandemic, I’ve completed the first cycle of chemotherapy and have now started cycle 2. I also marked the 1 year anniversary of my cancer diagnosis on November 8th – a scary yet momentous feat. Unfortunately, I didn’t manage to celebrate it with the same bravado that I was throwing at the cancer diagnosis this time last year.

The anniversary is a strange one. We didn’t throw a party with a huge ‘1 Year’ banner, or bake a cake with ‘Congratulations’ written across it. What is the appropriate way to celebrate your 1 year anniversary since being diagnosed with cancer? If it was my 1 year anniversary of getting rid of cancer, I may feel differently. That isn’t the case, though. This period has conjured up a mix of emotions in me, most of them negative. I wish I could shake those feelings, but I’m struggling to.

On the night of my diagnosis in King’s hospital, I remember sitting awake with Anna asleep next to me. As she slept, I sat staring at the ceiling. Throughout my life, I had been prone to thinking about the future and what it may hold for me. When I was younger, I would sit and wonder what I’d be doing a year from now at that exact second. In school, I would wonder if I’d have a new girlfriend or if I’d have done well in the end-of-year exams. As I got older, I thought about it less, but sometimes I would still entertain those thoughts. While living in Philadelphia, I’d wonder if I’d still be there or if I’d have gone back to the UK. It was a way of gaining some perspective on what was going on in my life, and it helped me appreciate the things that I enjoyed or didn’t enjoy about my current circumstances. The things that I fantasised about being different would usually be things that weren’t particularly working for me, and the things I hoped would have stayed the same, or developed further, were things that I was feeling content with.

As I lay staring at the hospital ceiling on the night of my diagnosis, I wondered whether I would even be alive a year from that moment. If I was, would I be happy that I was still alive? What if the cancer was out of control, and I was navigating a dark road to my ultimate end. I remember taking a deep breath, trying to be quiet as possible as I sat crying with Anna beside me, not wanting to wake her up. That night, we had expressed we had each other and that whatever happened next, we needed to spend it together and make sure we were happy. We’ve kept that promise so far.

It is strange being where I am now. The operation went far better than expected, which I am incredibly grateful for. That doesn’t change the fact that my life is a lot different now, though, and it will never return to the way it was. Without a pancreas, I am now diabetic in a way that I believe is much harder to manage. As far as I understand, the pancreas is not only responsible for producing insulin and regulating the body’s blood sugar levels, but it also plays a key role in regulating the hormones which control these processes. Without a pancreas, I have less control over those hormones. Some days I just cannot get my blood sugar to play ball at all. Some nights, my low blood sugar alarm will go off multiple times. Every so often, I’ll sleep through the first alarm and only wake up when I feel incredibly light-headed, with my legs shaking and a cold sweat starting to form on my brow. Sometimes, I’ll then sit there and wonder why the chemotherapy is deciding to wreak havoc on me at that moment before realising that my blood sugar is low. I’m still very new to diabetes, so the thoughts don’t always come naturally to me. I’ve gotten very good at having a broken night of sleep, and often have to eat fruit pastels at 4:00am to get my blood sugar up. Some people may think that is heaven, but it is far more annoying when you actually have to do it. I also have to clean my teeth after doing this, or I imagine my teeth rotting through the night and it stops me sleeping. Some nights I have cleaned my teeth 4 or 5 times because my blood sugar keeps going low.

I’ve tried to write a post about the anniversary of my diagnosis about 6 times over the past few weeks. The first draft was almost fully formed, and I was ready to post it on the day of the anniversary, but as I read through it, I didn’t feel comfortable sharing it. There was a lot of emotion in it, and I could tell that my head wasn’t in a good place. I wasn’t sure it was the sentiment I wanted to put out into the world for critical review. A few days later, I tried to rewrite it, but I found myself pulling every word I wrote to pieces. For some reason, I was being extremely critical of what I was writing. The language was too flowery, or I was dancing around my central point too much. At one point, I deleted 5 drafts at once, not even bothering to read their contents before doing so. The experience has really affected my motivation to write.

Perhaps linked to this self-critical attitude is my mentality toward starting the second cycle of chemotherapy. I started again on Tuesday, 15th November. The day before this, I had to go and do my blood test, as is standard before every treatment day, to ensure that the body is ready to handle another dose of poison. I sat in the waiting room at the hospital, keeping an eye on the appointment board and dreading my name appearing. Once my name was called, I made my way down the corridor and into the bloods office. I hung my coat up and sat down in the chair. “How are you doing today, Daniel?” the nurse asked me. She wasn’t ready for what was coming; I don’t think I was. The next 5 minutes was taken up by me talking about how I’m worn out, that I’m reaching total mental fatigue with the treatment, and that I don’t even feel confident it’ll increase my chances of survival, as that was what the oncologist had warned me about mop-up chemotherapy when he introduced me to the idea. They have not done the research to prove or disprove whether it was useful, but they tend to do it anyway, he had explained to me. It was the perfect distraction from the needle being pushed into my vein, but it highlighted that my head was not in a good place. The nurse was lovely and understanding. She punctuated my rant with encouraging comments like “you’re so close to the end” and “everyone goes through tough periods with treatment.”

One of the sticking points for me around the anniversary has been that a year ago, I genuinely didn’t believe that I’d survive this cancer. Now, I have a better shot at survival than I ever could have dreamt of then, so why am I responding like this now? I feel like I had more positivity to offer myself last year, when everything felt bleak and the road to recovery seemed insurmountable. I told the nurse that I felt like a spoilt child complaining about the position I’m in after having a successful surgery and being so close to being classed as ‘in remission’. It is a privileged spot to be in and one that the majority of people with pancreatic cancer don’t get to experience. I’m sure that I read recently that 50% of people diagnosed with pancreatic cancer are dead within 3 months of diagnosis; thinking about that just makes me feel even worse for complaining about the situation I’m in. “You can’t control the way you feel, Dan. Don’t be so hard on yourself.” I knew that the nurse was right in saying this, but it did little to pick up my mood.

The week before I returned to treatment, I had been in Jordan on holiday. One of my best friends is Jordanian, and we went over there to attend his wedding. We spent 7 days in the country, mostly in the capital Amman, but we also travelled around a little bit. Of course, we went to see the awe-inspiring Petra, but we also spent a night in the desert at Wadi Rum, and another night at the Dead Sea.

The trip had been causing me a fair amount of anxiety in the buildup to it – it was the first time I was going abroad since before Covid but, more importantly, since being diagnosed. Now, when I go abroad, I have a truckload of drugs to take with me, as well as my various needles used to treat diabetes. It was too easy to envision a situation where I lose all of my stock of Creon, a critical drug I need when eating, or leave my diabetes pens somewhere, or the airline loses my luggage which contains all of my backup stock. I fantasised about going through security in Jordan, only to be stopped and accused of bringing in illegal drugs. Of course, I waltzed through without anyone even batting an eyelid at me. You are your own worst enemy.

Jordan contains many sites that are incredibly old, with amazing structures that have stood for millennia. Some of the artefacts that we saw in the museums were nearly 4000 years old. It is mind-boggling. As I stood in a small museum on the site of the Amman Citidel, I observed a small skeleton through the glass. The information card in front of it stated that it was a child’s skeleton and that it used to be tradition, if your child died, to put their corpse into a jar, then keep it under the floor. I had one of those moments where all of my concerns and dissatisfactions with the world felt infantile and pathetic; I’m only bones, after all. It used to be common for children to simply die during birth, along with their mother. Why am I so precious about my life? What do I even add to the world? I haven’t cured any individuals of disease or given up my time to help those in need. It did little to improve my mood, but the whole experience was inspiring. I’m sure on another day I would have taken a very different message from it, but I was feeling egotistical and sorry for myself that day. It was more fuel to throw on the ‘woe is me’ fire.

One of the most amazing things we did in Jordan was visiting the Dead Sea. It is quite a beautiful shade of blue, and as we sat in the car driving along a road which framed it, I couldn’t help but be taken in by its glimmer. The sensation when you are in it isn’t like anything I’ve experienced before. It pushes you upwards, so much so that if you lean to one side and throw off the balance of your body, it will force you onto your front. We had Googled whether any life existed in it earlier that day and learnt that life cannot be supported in it due to its high salt content. It is hard to believe that a body of water that large contains no life at all. My hatred of the sea is due to the fact that I know there could be things lurking around me in the murky water; it makes my skin crawl. As I floated in the Dead Sea, I couldn’t kick the idea that there was a leviathan lurking at the bottom of that lake, waiting for the day that Daniel Godley, from England, made his way into the water for a casual dip. No Leviathan ever showed up. Perhaps they heard me saying to Anna, “we’ve got to come back next year,” and decided to wait until then to reveal itself to the world, as it ate me up. I did lose my wedding ring in the water too – perhaps the offering was enough to buy me some time. I made the point to Anna that I am now single, all before the big wedding that we were due to attend at the end of the holiday – what a result! She wasn’t too impressed.

The Jordan trip was mostly amazing, but there were a few incidents which kept me anxious. I’m prone to random (incredibly painful) attacks of abdominal pain and stomach issues. Of course, one of these incidents came as I navigated the old tombs of Petra. The toilets at this site are far from good. I think that referring to them as a sleight against human decency is a more accurate description of them. Despite this, I was forced to sit in one of them whilst I gagged into a dry toilet basin, piss surrounding me on the floor and a man trying to sell ‘ancient rocks’ within earshot, on the outside. The whole scene did little to make me feel better, and in that moment, I swore that when I return to my house in England, I’ll never leave it again.

Outside Petra

There was another day in Amman where we had walked around the markets for a few hours and were now ascending a hill to see a famous street called Rainbow Street. As we made our way up the stairway to heaven (it went on as far as the eye could see and felt genuinely insurmountable if you dared look up as you climbed it), I started to get bad stomach pains. Once we got to the top, I decided that I needed to find a toilet and fast.

We went into a small coffee shop and asked if there was a toilet. The man warned me that it wasn’t in good shape but agreed to let me use it. He unlocked a door to the side of the counter and didn’t make eye contact with me as I entered. He knew he was stitching me up; he had tried to warn me. I shut the door behind me, then turned to look at the room. The sink was not connected to a drain, and there was half a mop was lying across the floor (who knew where the other half was). The whole room was thick with the smell of cigarette smoke, and everything was damp. As I lifted up the toilet, I took a deep breath. The water, if it indeed was water at all, was black, and there were 5 cigarette ends floating in it. That explained the thick stench of cigarette smoke, at least. I immediately dropped the toilet seat shut and decided that I’d rather shit myself than spend another second in there. I ran out, passed Anna, who was standing ordering a drink, thanked the man, and proceeded to run around Rainbow Street, looking for a respectable alternative. Luckily, I found one.

I think the trip to Jordan has added to my mental burnout now with the treatment. My oncology team had agreed to give me an extra week off to allow me to go on the trip, so I’d had 2 weeks off treatment, as opposed to the 1 week that was in the plan. It took most of week 1 to get rid of the mouth ulcers and stop feeling a constant level of sickness. A little like a school child who has been off for the summer holidays and is now resentful that they have to return to school, I feel resentful that I am back on treatment. On top of that, I really do feel one of the worst that I have ever felt during chemotherapy. Every morning I struggle to get out of bed, and I am regularly getting migraines. After eating, I often feel sick, and there is an iron taste of blood which lingers in my mouth after I take the chemotherapy tablets. I try brushing my teeth, and it relieves it for a while, but then the taste fights back, and I am left with an irony, mint taste that makes me feel even worse.

When I went for treatment on Tuesday, I couldn’t help but think about the needle being pushed into the port in my chest. The whole thing made me feel anxious in a way that it hasn’t since I first started chemotherapy a year ago. When you look at the needle in the nurse’s hand, it looks quite long. I’d learnt to not focus on it and to look away, but here I was, driving to chemotherapy, fantasising about the size of it. I thought about the sharp shot of pain that bolts through the chest plate as it enters the skin, then the momentary flash of heat that seems to rush through your body. I didn’t feel ready for it. In my mind, I contemplated how I could get out of doing the treatment. Perhaps I could tell them that I have Covid. I knew that it would just be delaying the inevitable, though, and that I’d only be deferring the uncomfortable for another week. It was going to catch up with me eventually.

I’m trying to remember how broken I probably was a year ago from now, yet how much better my attitude was then. I would have been 1 or 2 sessions into Folfirinox with an unknown outcome and an uncertain future. Part of me thinks that I should start going back to the blog posts that I wrote a year ago today to remind myself of how much better my attitude was then under much more difficult circumstances. The thing stopping me is that I worry I’ll only focus on the things that I don’t like about my writing and that it won’t actually help me gain any perspective at all. I can’t stop thinking of the quote – ‘Life is wasted on the living’. When I was certain I was going to die last year, I felt more energised and motivated to enjoy life than ever. As soon as I feel more comfortable in the situation, I find myself moping around and complaining about my treatment schedule, and taking every bout of illness to heart, as if it is the end of the world.

The fact is that I’ve been doing this for a year now, and although every treatment step is designed to ultimately make me better in the long run, they all actually make me feel worse in the short term. Every session of chemotherapy leaves my body more run down than the last; the surgery has taken months to overcome, and in many ways, I am still struggling to fight back from it. I felt well enough to run throughout my original sessions of chemotherapy, but I haven’t managed to run at all since the surgery. There has been very little respite in the process. The burnout is becoming tangible. I feel like a drag to be around. I want there to be a button I can press to fast foward the next 2 months. Such a thing doesn’t exist, and I am conscious that you should never wish your life away, so I’ll keep pressing on. Just another 6 weeks or so, then I can focus on getting on with my life – so long as the post-chemotherapy scans don’t throw any curveballs in the mix… I can’t be positive without countering it with something negative at the minute, can I?

The Last Throes of Treatment

Lucy On Her 1st Birthday

From now on, I think October will always be a weird time for me. It is that period when the days start getting shorter, and all of the enthusiasm of the summer sun is waning. I didn’t use to mind the shorter days; winter was actually my favourite time of year when I was younger. Me and my friends used to hang out together when we were teenagers in the local parks, and it was fun when it was darker. You felt inconspicuous. Nowadays, I realise that we probably looked intimidating, but we mostly stayed out of people’s way. There wasn’t a lot to do in the village we’re from, so standing around in parks felt like a pretty normal pastime.

Unfortunately, October is now known to me as the month where I was in and out of hospitals, trying to get the sudden sickness that had come over me diagnosed. It started out with me reluctantly going to A&E, knowing that it’d take away an entire evening of my precious life. Then it extended to a week of blood appointments and scans. Then a referral to another hospital with a more specialised Hepato-Pancreato-Biliary (HPB) unit. After 3 weeks of this, I’d been told that I had cancer but that it was a very slow-growing and non-aggressive cancer, which felt comforting. Another week passed; the diagnosis was wrong. By the start of November, I was learning the true extent of the issue. Pancreatic Cancer. You never think it’ll happen to you, but here I was. It was happening.

I’d be lying if I said that it does not feel significant to be sat here a year on. I remember attending the hospital throughout October and wondering when it was finally going to be over. I remember the first time I picked up a prescription for a drug called Creon – the enzyme replacement treatment that I am now all too comfortable with. At the time, the specialist told me that it might help to reduce the amount of pain I was experiencing in my abdomen. He told me to take one before and after each meal. I had no idea that I’d end up taking around 20 – 30 of those tablets a day. At the time, I think they believed my pancreatic functioning to be a little low, meaning I only needed a small amount of enzyme replacement therapy. Now, I have no pancreas at all, so all I have is enzyme replacement therapy. I constantly have to battle with the local pharmacies for more of the drug because I use so much of it, and they seem reluctant to stock too much of it. Perhaps the town I live in is full of people suffering from pancreatic issues. Maybe they should start testing the water and sorting out the issue – there isn’t enough Creon in this town for all of us. I hope I get priority as the flagbearer of pancreatic cancer (a title I have definitely assigned to myself and do not deserve based on any reasonable definition of ‘merit’).

It didn’t even occur to me last October that I might end up a diabetic, need major surgery, or have to do 6 months of chemotherapy. I was still assuming that it would be a quick fix – even if that was some sort of minor surgery. You don’t think you’re likely to have cancer when you’ve been running marathons like I had been doing throughout September. You just assume that people with cancer feel different, that their bodies can’t cope with the stress of training for more extreme fitness events. Unfortunately, they can. Bodies are resilient. So are human emotions of denial, especially where that denial can preserve one’s sense of normality. Going to the hospital was a concrete admission that something was wrong. I told myself that it was a food intolerance causing me pain. I told myself that it was minor and that it didn’t require further attention. The few times I did try and get diagnosed, I felt like I was making a mound out of a molehill; I wasn’t taken particularly seriously by any of the medical professionals I saw. That reinforced the feelings of inadequacy – inadequate to be taking away these people’s precious time; they could be seeing someone who really needs the attention, someone with cancer.

So, October drags on, and so does the treatment schedule. I’ve been back at the hospital to do bloods today before starting the mop-up chemotherapy tomorrow. The new treatment schedule is one consisting of 4-week cycles – 3 ‘on’ weeks and 1 ‘off’. On the on weeks I have a 30-minute infusion at the hospital and have to take chemotherapy tablets twice a day. On the ‘off’ weeks I forget about hospitals and get on with my life…until the next cycle starts, of course. The whole cycle repeats 3 times, and then I have to do another scan. Assuming that scan is clear, I’m then a free man! Until the next scan, then the next scan, but you get what I mean…

It means that The Chemotherapy Diaries series is going to have some new life breathed into it. Back by popular demand. I think I’ve probably had some of the biggest compliments on the blog from that series. Maybe the feelings that chemotherapy inspires are the exact point where cynicism meets defeatism, creating the perfect environment for comedy. Time to pick up my sick bucket and pull up my gloves again; the tingling fingers of a chemotherapy patient, tapping away on their phone, writing their blog where they moan about everything and don’t relent over anything. Oh please dear nurse, take more of my blood for I have no need for it. Shakespeare would have invented 500 words in 12 chemotherapy sessions; I barely managed to produce the ones I know. I usually sat with my head between my legs and my headphones on full blast. It was comforting until I got the inevitable tap on the shoulder from the nurse – “Are you sure you’re ok?” They’d say. “I’m fine. I always sit like this,” I’d respond, not moving my head from its brace position, still staring into the eternal void I’d created between my legs. Lovely, endless void, we meet again. That was always during bag number 2 – this time there is only bag number 1, and it’s only 30 minutes.

The cycle does sound much more manageable. It’s going to be interesting to see how much the mop-up chemotherapy affects my energy levels. They’ve been good recently – I’m working full time again, taking Lucy on regular walks and waking up relatively early without feeling devoid of all energy. The blog has been taking a hit now that I am working full-time again, but I’m figuring out how to create space for it in my more normal life. I’m finding myself staring at spreadsheets again instead of fawning over this word or that phrase. It’s been good, actually. I forgot how much personal triumph you can feel from working. When I have an idea about how to sort out a data problem that my team is having and I write the formula, then watch as I execute it and all problems are temporarily resolved in the world, I feel a rush of adrenaline. “This is living,” I think to myself as I take a sip from my coffee. Life is simple sometimes – Microsoft Excel offers refuge in the form of linear problems with linear answers. Dealing with chemotherapy doesn’t feel quite so linear.

Even the sickness I get after eating has been reduced. It is still a problem, but less so. Sometimes I manage to eat a meal without getting any sickness at all, though this is rare. The sickness is much more manageable even when it does happen. It’s more like an annoying voice in the back of my head telling me “you feel a bit bad after eating that sandwich for lunch, don’t you, Dan? Maybe you shouldn’t have put so much cheese on it, you pancreasless weasel.” Come to think of it, I should change my Twitter handle to Pancreasless Weasel. My Twitter account is far too serious currently.

The excitement at finding data solutions is yet another sign that my life is actually returning to normal. It’s crazy – I truly didn’t believe that things would ever get back to this place, or anything like this place. Despite knowing that I have another 5 years of regular scans before I can truly breathe, it feels like space is being created between the cancer and myself in my life. I’m starting to feel like someone who can talk formatively of cancer, not as someone suffering at the hands of it. No matter what happens in the next 5 years, I’ve gotten to a place which I didn’t even dare to dream of a few months ago. In the last 12 weeks alone I’ve come to be at peace with being diabetic, even finding the process quite fun. It is like a game that you are constantly involved in, yet have no choice over your involvement in it. It is similar to life itself in that regard, I guess, but the diabetes game comes with an app that has a nice graph and lots of statistics about how well you’re doing. Life doesn’t come with such an app. Perhaps I’ll try and create one.

Something that does feel somewhat significant is the fact that Lucy turned 1 at the end of September. We got her at around 8 weeks old, so the countdown is on to the 1 year anniversary of us first meeting her. She has enriched our lives so much. You really do see the best of the world when you spend time around a sausage dog. Seeing their impossibly long bodies bounding through the shortest of grass, yet making it look like a fully grown cornfield, is a comedy that you cannot really recreate any other way. I watched an interview with Christian Bale yesterday where he said “The best actors are children and animals because both don’t give a shit what anyone thinks about them,” and it is so true of Lucy. She is unapologetic in her approach to the world. I’ve spent so long feeling every negative and positive emotion under the sun this year. Everything has been intensified by what has been going on with the cancer. With a sort of end in sight, I’m beginning to get more perspective on everything and feel a sense of relief. As I start chemotherapy again tomorrow, I do so with a genuine end in sight. That certainly makes it easier. So does watching Lucy go about her life without any regard for the bigger picture. There is only this impulse or that desire. You can find plenty of lessons in watching a dog go about their day-to-day life of eating, pooing, sleeping, and repeating. Someone should turn that into a t-shirt or something.

A Not-So-Impressed Lucy

It doesn’t make the month of October any easier to deal with, though. I will forever blame this time of year for punishing me as it did last year. I remember an unusual period of hanging around the flat after spending whole days at the hospital, not knowing what the future was going to hold for me, getting increasingly frustrated at the lack of concrete answers, and the growing anxiety that was building. Who knows what I was doing exactly 1 year ago this second. In a way, it is easier now that I understand the extent of the illness and that I have been through so much to try and fight it. Better the devil you know than the devil you don’t. I’m married now, and I’ve got a little not-so-puppy puppy that has just turned 1. Life is good, so let’s hope this next bout of chemotherapy is good too (and generates some juicy content for the blog).

Oh, and my mum has a little puppy sausage dog now too. So that’s got to generate some good pictures for the blog, right? Lucy keeps humping her which is a little disturbing but further proof that dogs really just don’t give a shit. She’s 9 weeks old, Lucy. Tone it down a bit…

Lucy, Meet Lila

Marathoner

Greg at the Iron Man World Championships

My slight insomnia seems more determined than ever right now, so I find myself starting writing this post at 00:30 on Monday morning. I spent Sunday attempting to support my eldest sister Becky as she ran the London marathon. My ‘attempt’ to support her wasn’t because I was not indeed supporting her through my thoughts and words, but because my physical attendance on the day was cut short due to some fairly routine stomach problems. It’s a shame as I came down to London this weekend specifically to support her on her big day, but after only managing to see her once at around the 13 mile mark, my stomach problems kicked in. I tried to persevere, but sometimes these issues aren’t down to perseverance, and I didn’t want to embarrass myself in central London, in front of my family and my new wife. That really would have been a test of our vows. ‘Bowels testing the vows’. What a horrible yet intriguing sentence. Perhaps it’d make a good play. Someone should write it.

Becky hasn’t run a marathon before and judging by her first message after finishing, I’m not sure she’ll be rushing to do another one. “Fuck am I ever doing that again,” read her first message in our family WhatsApp group. My dad isn’t a fan of swearing, so she must have really meant it. As we’ve gotten older, we’ve gotten lax with our swearing around our dad, but you could tell she really meant those words; it wasn’t just inflammatory for the sake of winding up my now retired dad (he’s finally officially a pensioner as of the close of business last Friday, despite actually taking his pension a few years ago).

Whether she does one again or not, it’s a huge achievement. I know people think every Godley has some natural trait which makes them able to do marathons at the drop of a hat, but it really isn’t true. Some of us go to pretty extreme lengths with our love of exercise – my brother, Greg, goes to extremely extreme extremes, but we’ll come back to that later. Becky isn’t typically one of them, though. She enjoys running to keep fit, but also enjoys actually having free time where she isn’t training. She also probably enjoys occasionally dressing up, having a few too many drinks and getting blisters from her nicer looking shoes, as opposed to already having them from running too many miles, too many times and over too many weekends. I hope she will get to indulge in a few of these now that the marathon is out of the way. She has earned it.

In all seriousness, she really isn’t one of the Godley’s who loves the punishment that comes with these more extreme events. Or she isn’t historically, anyway. Who knows where this will take her now… I know that people will think I’m being modest here, as I have completed quite a few marathons and even more ultramarathons, but I really do put myself in the same category as her in terms of natural ability. I don’t have a lot of natural ability with running, and I think she feels the same way. Any skill I had with running came from sheer determination. I just kept doing it and doing it and doing it, never getting loads faster, but managing to go a lot further. Each time I entered a new marathon, I told myself that this would be the one where I would do an impressive time, but it never really happened. At my first ever marathon, I finished with a time of 3hr 47, and I felt relatively happy, but I thought I could do better. The only other road marathon I completed was the Brighton marathon, and a combination of hot weather and having pancreatic cancer, but not knowing that I had pancreatic cancer, meant I finished with a less-than-impressive 4hr 3. The only thing that I consider quite impressive in my speed repertoire is my half marathon PB of 1hr 38, but this is still pretty slow for someone who trained as hard as I did. Ultramarathons were always more my thing – I could dig deep over distance, and that seemed to give me an edge. But anyway, this isn’t meant to be about me…

Becky may not love the punishment of a tough training schedule, and she may not have the natural speed and agility that my dad had, but she’s ran a marathon. In many ways, it is more impressive to see someone finish a marathon who is not a seasoned marathoner, than it is to watch someone complete their 40th marathon that year. The grit and determination that she showed to get over that finish line is admirable and inspiring. The fact that she also did the marathon in aid of The Christie, the cancer-specialist hospital that provide my oncology care and who have almost definitely extended my life considerably, if not actually saved it from the hands of pancreatic cancer, makes it even more special.

My surgeon told me that most oncology teams in the country, if not the world, would have told me that nothing further could be done based on my diagnosis (stage 3 pancreatic cancer, with an artery fully enclosed by the tumour) and the images produced by the CT scan post-chemotherapy. My specialist at The Christie recognises the limitations of these scans, however, and is an incredibly forward-thinking individual when it comes to the treatment of pancreatic cancer. He is an example of the excellence that The Christie has become associated with. That excellence attracts excellence, and that is how he became associated with my surgeon, Mr Nicola de´ Liguori. Together, their pioneering approach to treating pancreatic cancer, led to the full removal of the tumour, against all of the odds.

Where others would have accepted defeat, they pioneered an approach of calculated risk – daring to hope that by taking on that risk in major surgery, they might be able to generate a better result for me. They did, and I can’t thank them enough for it. Mr de´ Liguori specifically requested that I name him in my blog posts, as he wants to encourage this type of approach more often when treating pancreatic cancer. I’m unsure about my oncologist, and whether he would want me to speak about him by name, so I won’t name him specifically. Mr de´ Liguori has seen more people approaching him for a second opinion on scan results, and he wants this to continue. Many people don’t even realise that one can survive without a pancreas. My brother Freddie is the most recent person to experience this, as he told a friend in the pub that his brother had recently had his entire pancreas removed. “You must be wrong, Freddie. You can’t live without a pancreas,” his friend responded. Freddie then wondered whether he had got it wrong, or if I had even gotten it wrong and had misunderstood what had occurred in the surgery. Neither of us were wrong, though. It just isn’t common.

There are probably a lot of reasons that a total pancreatectomy is uncommon – sometimes the tumour is too established, and it wouldn’t save the patient’s life. Sometimes the cancer has already spread. I’ve seen it sighted online that it is the huge lifestyle changes post-surgery, with the patient being diabetic and needing enzyme replacement for life, that makes a total pancreatectomy an unattractive option. This last one intimidated me for weeks after the surgery, but I feel very differently about it now. The lifestyle changes are immaterial if it saves your life – I am proof of that; you can adapt very quickly, and all of the lifestyle changes just become normal. Far better than just dying. There are almost undoubtedly many cases where such an approach could save a patient’s life, or give them more valuable years. I’m lucky enough to have received treatment at two world-class hospitals, The Christie and Manchester Royal Infirmary. I’m about to start chemotherapy back at The Christie in a few weeks, and I’m extremely glad to be back under their care for what will hopefully be the last phase of my treatment for cancer.

Becky is just under £30 away from hitting her fundraising target, and it would mean the world to her if you could help push her over that goal. You can donate here if you are willing and able.

Becky Seeming a Little Delirious

My brother Greg seems to have far more natural ability in terms of speed and stamina than Becky and me. He gets that from my dad. I put myself far more in my mother’s camp – a person who has run a marathon in her day, and even did a few trail ultra marathons, but who did not indulge in a running schedule totalling an average of over 100 miles a week, acting like it was totally normal like my dad did when he was in his 20’s. Greg is definitely following in my dad’s footsteps. He may have even created his own footsteps on the path to self-damnation with his latest series of events, though.

In the past few weeks, Greg has challenged himself to 3 separate events. He has cycled from Inverness to Preston, done a double Iron Man (where you do twice the distance of the swim, bike and run) and he is currently in Hawaii to compete in the Iron Man world championship, after qualifying for his age category. I don’t really need to speak too much more about it all – the level of exercise that Greg is now engaged in is utterly ridiculous. There is a bittersweet element to watching him challenge himself in this way for me – I never really got into the Iron Man stuff, but we used to do a lot of ultra marathons together. I hope to get back to a place where we can do this together again, but I fear that I will forever be slowing him down now. Perhaps he needs slowing down a little bit, though.

Greg is raising money for Pancreatic Cancer Action, a charity who have helped me out a lot since being diagnosed. Their founder, Ali Stunt, is a 15+ year survivor of pancreatic cancer; that is not something you see very often. It would be easy to chalk this down to ‘luck’, but you start learning that there is more to these things than simple luck. Her determination to help others resulted in her setting up her charity and the work they do is so incredibly important to people like me. She has helped me out immensely throughout my treatment and continues to help me out now. I’m so grateful to her and her team for everything the have done for me, and am so happy that Greg has chosen to raise money for them.

Greg is a couple of hundred away from reaching his target – you can donate here if you would like to. The world championships are happening on Thursday in Hawaii, so be sure to check out the Just Giving page to find out how Greg does in the event.

Wedding Day

It feels a little weird to sit down and write a blog centred around a wedding. Usually, I feel like I understand my role in writing the blog – I describe gritty scenes of hospitals and feeling unwell, demanding the reader’s sympathy, all to make myself feel better about the predicament I find myself in. So where does a wedding fit into a cancer blog? Well, it was my wedding, and I have cancer… or I had cancer. I’m not sure what is technically correct right now. Until I’ve finished the mop-up chemotherapy, I don’t feel like I can say I’m cancer free, but the sugeron did tell me that I was technically ‘cancer free’ before I was discharged from his care. Considering I have just had another scan on Friday, I’m not going to curse it and start ringing the bell of success just yet. That would be tempting fate. Let’s say I do still have cancer, for now.

The wedding date was Friday, September 16th. Despite there being a few days of rain prior to the day itself, the sun showed up for the event. We did personally invite it, so it would have been rude if it had shunned us. Another issue had been looming over the event, though. Rail strikes were planned across England and were majorly impacting the train services which many of our guests would be using to get to the venue. In the weeks leading up to the wedding day, I was receiving more and more messages from friends stating that their trains had been cancelled. One friend who was travelling from France had messaged me to tell me that the Eurostar train service from France to England had even been cancelled, and she was having to seek an alternative route to the wedding. Everything was going wrong. Then, Queen Elizabeth sadly died the week before the wedding, and all train strikes were called off. The circumstances were unfortunate, but they did benefit us. Perhaps the omens surrounding the wedding weren’t so bad after all.

I started the day in my own bed, alone. Anna had stayed with her family in their Airbnb. A sudden panic had come over me as I had no idea where Anna’s wedding ring was, and whether I was supposed to have it. She didn’t inform me that she was going to ignore me all morning, but I got an inkling that this was occurring when she ignored my 3 calls to her that morning. Her mum rang me back a few minutes later, fulfilling her apparent role as ‘messenger’. Luckily, Anna and her mum had the ring. It then occurred to me, however, that I didn’t know who was supposed to have the rings for the ceremony. I understood it was the ringbearer, but who was the ringbearer? It should have been our dog Lucy, but we doubted the venue would allow it. Anna’s mum, Kathy, also would not have allowed the wedding to go ahead if we had actually given Lucy the rings, so the dream was already dead.

I took an executive decision and gave my wedding ring to Keiran, my brother-in-law, and our new ringbearer. The decision was very thought out. “You can be the ringbearer,” I retorted to his complaints that he didn’t have a role at the wedding. Keiran’s thirst for attention needed to be sated somehow, so it seemed an easy fix to both problems. When it came to presenting the rings during the ceremony, he made a huge song and dance out of the whole affair, ensuring he was stood at the front for as long as possible. ‘Forgetting’ which pocket which ring was in, and taking as long as possible to dig them out and pass them over, Keiran made the most of his 5 minutes of fame. “Keiran nearly did a good job,” the registrar said at the end of the ceremony. Even she was sick of his antics; I’ve been putting up with them for 7 years now.

The day went very quickly, as everyone always tells you it does. I could barely breathe between conversations and was constantly getting dragged in twenty directions. All the nerves I felt came at the start of the day, when people started to arrive outside of the venue. Once the ceremony started, they mostly dissipated, only coming back again as the speeches began. My speech was third out of the four, and I sat trying to focus on what was being said in the speeches that came before me, but with one half of my brain focused on the impending speech that I’d have to deliver. Things went very similarly to my nerves at the start of the day, I felt incredibly nervous at first, but after a few of the routine jokes went down well and I really started to believe that I had the room on my side, it got easier. I then got to enjoy my best man’s speech with impunity. All of the speeches were great, and it was interesting to see all of the different approaches taken during them.

By the evening part of the wedding, I was starting to feel tired out. I lasted until about 23:00, though, which is much better than I thought I’d manage at the start of the day. Aside from the guilt of not speaking to anyone enough, the day went as well as we could have hoped it would. I thought that I’d suffer from a huge lull once it was all over. It has been a beacon of light ever since we set the date around 7 months ago; a safety net that was there to support is no matter how bad things were getting in the present. Strangely, I’ve felt quite the opposite. It has felt easy to appreciate that it was an amazing day, but that it is over now.

There is a comfort knowing that it all went so well, and that I am now happily married. I think it is a lesson that I have been learning over the past 12 months. As you adjust to a new standard of life, and a new reality that you exist in, one which requires you to be ever more conscientious of the fragility of it all, you learn to really enjoy something for what it is. We cannot go back and relive special days like our wedding day, we can only breathe life into those memories by chatting with friends and family about them, looking at the pictures and re-experiencing the key components – things like the first dance song or the main course that you chose. That has to be enough once the day is over. If it is not, you will mourn the fact that you can’t do it all again, and it will tarnish how you special it all was. Anna and I have been listening to our first dance song a lot in the past week. It’s been lovely.

The First Dance Song

After the wedding, we spent a night away at a very nice hotel called The Tawny in Stafforshire. We could only get one night at such short notice, which was unfortunate. It has lovely grounds around it, and we spent a few hours walking around and discovering some of the hidden treasures. We randomly found a tennis table as we walked along a path, and Anna proved just how terrible her hand-eye coordination is. It was good fun. I couldn’t take advantage of the hot tob like she could, as the wound on my abdomen is still open and at risk of getting infected. I sat next to the hot tub reading whilst she enjoyed the bubbles. It was a nice way to spend the evening and definitely made it feel special, as we would not usually do something like that so off the cuff. Perhaps we should start being more impulsive like this, but I have 3 more months of chemotherapy to get through first, which is why we hadn’t booked a proper honeymoon yet.

Exploring the Grounds

This week it has been back to the hospital appointments. On Thursday I had a meeting with a diabetes specialist nurse at Manchester Royal Infirmary. The nurse told me that she only did two days a week as a diabetes nurse at the hospital, and spent the others as a sports nutritionist for a university. As a result, we ended up speaking a lot about running and its impact on your body. I told her that I was starting to consider running again, and that I had been running throughout my first bout of chemotherapy. She wasn’t impressed. I didn’t know this, but she told me that your lungs and respiratory system are very vulnerable during and after running. With my body going through so much, with the chemotherapy, surgery, and with the upcoming chemotherapy, she told me that I should be careful. I asked her how long she would suggest waiting before starting again, and she responded that she would wait until at least 6 months after finishing chemotherapy. I was quite shocked, actually. It was a helpful conversation as it has convinced me not to start running too soon, but I’ll inevitably ignore her advice. I’m already itching to get out again and I haven’t even started the final 3 months of chemotherapy. Before I start chemotherapy, however, I have to receive more scan results.

On Friday, I had another CT scan at The Christie, checking for tumours in my body. It is never fun attending scans, and the period in between having the scan and receiving the results is never nice either. I’m still feeling very in the middle of the treatment, so I don’t feel too nervous about it. I think it is quite unlikely that a tumour would have taken hold in the time since my surgery, so that makes me feel better. My life hasn’t really returned to normal anyway, though, so I don’t feel like I have very much to lose right now. If I heard another tumour had started to grow somewhere, it would just mean more fighting. I don’t feel like I’ve left that mode in my mind yet, so fighting on would just be a continuation of the current status quo. It’ll be much harder to cope with the scans if I get to 2 years clear, and I have established a ‘normal’ life again. That will be when it risks completely unturning everything again, like my original diagnosis did. For some reason, I feel like a lot more hangs in the balance in that situation. Perhaps this is all just me rationalising why these results aren’t too important, making me feel better about them. Who knows. For now, it’s back to work, back to scans and back to the ‘real’ world. Anna and I had a few days where we treated ourselves, but it all needed to end at some point.

Sorry for disappearing on the blog again – it was a very busy period. I’ll be back to it properly from next week, complaining about having my blood taken and delving into all the doom and gloom of having/not having cancer. I have so much complaining to do about diabetes that I’m considering writing a book titled ‘Don’t Lose Your Pancreas’, which would be all about how fucking annoying life gets if you do indeed lose your pancreas. Maybe I should call it ‘Dancreas Pancreas’, actually. It sounds like a spell from a Harry Potter book, though. Maybe I’ll write some fan fiction where the world of diabetes crosses over with the world of Harry Potter. Instead of having a scar on his head, Harry could lose his pancreas and then have to manage his blood sugar whilst he tries to fight 3 headed dogs and woo Ginny. That’s probably the only way it’ll actually sell. At least I’ve got a plan for the book now. That’ll distract me from the fact that the wedding is over and I’ve got scan results coming up on Thursday…

Another Day, Another Hospital Stay

The Progress of the Wound

I’ve spent so much time in hospitals over these past 12 months that I’m starting to consider myself somewhat an expert on them. Sure, the staff at a hospital spend much more time there than I ever could, but they aren’t then forced to sleep on the thin foam mattresses and eat the inexplicably disgusting food. When I go into the hospital, I really walk the walk. I throw up in the cardboard buckets, sulk in the side rooms and indulge in the various sizes of cannulas. Once, I had 3 separate cannulas in my two arms, yet the nurse still approached me and asked if she could put in another one. “What is wrong with the ones I already have in?” I asked. “They aren’t big enough for a blood transfusion,” she responded. I wondered how my veins were still managing to carry blood around my body at all. They were starting to resemble a Kerplunk tower.

My knowledge of hospitals is exactly what makes them so unappealing to me. The overbearing smell of the chemicals used to clean every surface. The solitude of the shared wards, where I am forever damned to being at least half the age of everyone else in the room. The excitement when a nurse or doctor shows up to talk to you about something, only for the conversation to last a mere 3 minutes; a momentary break in your daily routine of watching videos on Youtube, trying to sleep and staring at your own legs. A&E is even worse, though – a holding pen of drunk, miserable and desperate people, most willing to exaggerate, lie and even scream to get a 5-minute improvement in their overall wait time. Pair that with the average wait time being approximately 2 weeks and you get a pretty unappealing offering.

A&E is so unappealing in the UK right now that I spent 4 hours last Saturday night projectile vomiting and trying to withstand some of the worst abdominal pain I’ve ever felt just to avoid it. My theory was that it would all pass if I just waited another hour…

Another hour…

Just one more hour…

Eugh.

That theory never materialised and as I lay there on the sofa, keeled over in pain, I finally succumbed to the inevitable. At first, we tried to ring an ambulance to take me. The last time I required an ambulance was to be transferred from Leighton hospital to Manchester. During that journey, the ambulance crew encouraged me to ring an ambulance in future if I am in a lot of pain as they described my case as “more worthy than 99% of cases that we spend our lives attending to.” Encouraged by this advice, and in desperate need of some top-grade morphine, I called the ambulance service.

Unsurprisingly, they told me that I could wait, but it would be at least 4 hours. Who would have guessed that the ambulance service would be busy on a Saturday night? Perhaps I should have lied and told them that my chest and back were indeed hot, and that my stools were so black and tar-like that they turned the water in the toilet basin the colour of squid ink, but that isn’t the kind of person I am. I answered their list of questions as honestly and positively as possible, which got me exactly where it was always going to get me. Deprioritised. Rating your abdominal pain an 8 out of 10 and repeatedly projectile vomiting 2 months after major surgery is only worrying if your chest is also warm… You really do need to be on death’s door before they’ll take you seriously. My last ambulance crew told me that they spend their lives attending to low-priority calls about issues that barely require hospital attention, but maybe they were just liars.

My mum, Anna and I jumped into the car. Royal Stoke hospital is a 20-minute drive, so it isn’t too bad. It was the pain relief that I was so keen to get, and I knew that I wasn’t going to get it for hours if we walked into A&E. When you get an ambulance, you get it before you even make it to the hospital! It is a life of luxury in an ambulance – you’re given your own driver AND a separate paramedic who can prescribe you morphine; no wonder they’re so popular on Saturday nights. I crawled into the back of the car. My mum handed me a bucket, which was a good idea in hindsight, as 15 minutes into the journey I started throwing up again. The car stank for the last 5 minutes, but the bucket was then left in the back of the car, to my mother’s dismay as she returned to the car a few hours later. She then had to drive back to the house with the smell of stale sick lingering in the air.

Anna and I went straight into A&E whilst my mum negotiated the car park. One thing I will say about having a major operation and a history of pancreatic cancer is that you do get triaged very quickly. As the receptionist was handed my discharge notes from Manchester, which includes my original diagnosis of stage 3 pancreatic cancer, all of the gritty details of the operation, as well as the fact that I am now fully ‘insulin dependent’ (AKA Diabetic), she looked a little overwhelmed. We sat in the waiting room for no more than 10 minutes before I was called up. I was glad to be out of the waiting room – it was full of drunk, miserable people. I was also miserable, but the others were really miserable; there was wailing, shouting and some chaotic laughing coming from a man lying on a set of chairs who was occasionally shouting something at a man sitting across from him – I’m pretty sure he was being racist to the poor guy, but he could barely form a coherent word, so it was hard to really know.

The nurse took us into a bay and closed the curtain. As she asked me to explain what was happening, and I started making my way through the history of Dan’s cancer, I started to cry. At some point during my recital, a thought hit me like a freight train. I remembered watching an advert about cancer a few years ago where a woman described suddenly falling violently ill, projectile vomiting and not knowing why. A week later, she was diagnosed with cancer. I sat in the chair, bent forward and holding my abdomen. “It’s fucking spread, hasn’t it?” I said to Anna. Shortly after the nurse took us to a room and told me that I can’t be around the general population in case anyone passes something on to me. There we waited about 30 minutes for a bed and then we settled in. It was about 23:30.

It took around an hour or two for the nurse to put in a cannula, take bloods and give me a course of pain relief. Things slowed down after that. The nurse told us we were “going to be seen next” for a grand total of 5 hours. By the time a doctor finally came to speak to me, it was around 6:30 in the morning. After the pain relief had dampened my abdominal pain, I’d spent most of the time drifting in and out of sleep. Poor Anna and my mum were taking turns alternating between the two chairs in the room – one was actually a stall, so to sleep on it, they were having to lean their head forward and rest it on the bed. It didn’t look comfortable at all.

Luckily, when the doctor did eventually see me, she was extremely knowledgeable and diligent. She quickly went through my blood test results, telling me that my infection markers weren’t worryingly high but were raised. The plan was to do a CT scan at some point that morning. Unfortunately, the shift changeover was at 7:00am so after that brief interaction, we didn’t see her again. After a few more hours I was moved into another part of the hospital where I stayed for another few hours, before being admitted onto a ward. I really didn’t want to be admitted. In my experience, trying to get out of the hospital once you’ve been admitted is like trying to escape Alcatraz. The amount of procedures you have to fight through just to leave on the day you are discharged is crazy. You sit around waiting for the doctor to write the discharge notice, then you wait for the ward to process it, then you need a porter to ferry you to the discharge lounge where you have to wait for the Pharmacy to put together your medication, which has never taken less than 3 hours for me, then, finally, you’re allowed to leave. By this point, it is usually 20:00 in the evening and you’ve spent all day in purgatory, resisting eating any more hospital food because you know that soon you’ll be able to have real food from home, food that actually tastes of something.

So I went to a ward, then got moved to another ward and then went to do the CT scan. A few more scans were planned for Monday morning – the hospital needed to order some of the materials required to do the scan. The CT scan used a contrast dye which is pushed directly into your blood via the cannula which is connected to a line. The type which they couldn’t do was one where you drink a liquid before the scan, taking a cup of it every 15 minutes for an hour, and then you go into the scan. I believe the liquid you drink can be tracked as it makes its way through your body, allowing them to trace how things are moving through. Some of the details might be wrong there, but hopefully, you get the gist. The hospital didn’t have the liquid you need to drink prior to having the scan, so this is what we were waiting for.

The results of the CT scan showed that I had a blockage in my colon. One of the new joins in my digestive system had swelled up, I think, and it was causing my stomach to not empty properly. When my body realised it couldn’t digest food, it went into emergency mode and decided to fire it back out from where it came from. That seemed to explain why I’d had such a bad pain in my abdomen.

A downside to the next scan being Monday was that I wasn’t allowed to eat anything until after the scan. This wasn’t a problem Saturday night, with the taste of sick lingering in my nose and with me barely stomaching water alone. It was starting to become a problem by Sunday afternoon when I was actually feeling a lot better. My stomach was hurting but I was starting to get quite an appetite again. There was nothing to be done, though, so I settled into another night in a hospital.

A downside of being diabetic is that not eating can send your levels all over the place, especially if you’re ill. My body was not only fighting whatever was happening now, but it is also trying to recover from the surgery. The surgeon had warned me that this will likely be the case for 6 months and that my blood sugar levels will be difficult to control throughout this period. Between the illness, recovery from the operation and not eating, my blood sugars kept dropping to dangerously low levels.

For those of you who don’t know much about diabetes – the idea is to try and control your blood sugar levels in a similar way to how your body does when it is functioning properly. You inject insulin to stop your blood sugar from spiking when you eat and to bring it down, and if your blood sugar gets too low, you urgently take on sugar to bring it back into a safe tolerance. By ‘take on sugar’, I mean that you drink something sugary like fruit juice or Coke. You can also eat sweets that are all sugar, but anything that also has other nutritional content, like chocolate bars, which also contain fat, will take longer to digest. That means a slower increase in your blood sugar, which could be dangerous. Your blood sugars can be high without it being dangerous on a short-term basis, so it isn’t too concerning if they are slightly elevated. Low blood sugars can be very dangerous, though, and can result in an individual passing out, with the risk of falling into a coma.

Another downside of being diabetic and being an inpatient in a hospital is that nurses, in general, do not seem to know how to manage it at all. That night, the nurse came to take a reading from me. It stated that my blood sugar was at 2.7, which is low. The ideal range is between 4 and 7, but I consider anything up to 10 as Ok. The reason it had got so low is that my Continuous Glucose Monitor (CGM), the device which is attached to my arm and continuously sends readings to my phone, tends to record around 2 points higher than my blood sugar level when tested. It isn’t always that different, but when the blood sugar levels are changing frequently, as they were that night, it tends to be more inaccurate. That meant that I thought my blood sugar levels were around 4.7, which is fine, but in reality, they were lower than this. As I had recorded low blood sugar levels, the nurse had to put me on a sliding scale.

Now, I repeatedly told her that I’d rather manage it myself and that my body will be very susceptible to insulin when my levels are being so volatile, but that couldn’t supersede the ‘process’. If your blood sugars are recorded as low, the staff have to ‘take control’ the nurse told me. The problem is that most of the nursing staff don’t seem to understand how to control a diabetics levels. I heard the nurse repeatedly asking another nurse how a sliding scale works, what she should be doing with it etc. I wasn’t particularly happy that this person was in charge of it.

A sliding scale is a machine which is hooked up to the cannula and monitors your blood sugar levels. The nurse can tell it to give you a certain amount of insulin per hour, which is what this nurse did. The problem is that my level was randomly dropping without much warning, so why would I want to introduce more insulin into my body at this time? I said this to her, but she told me that they had it under control. Of course, that night, I had 3 hypos where I urgently had to eat glucose gel to get my levels raised again. Eventually, the nurse listened to my pleas to stop leaking insulin into my body and changed the amount of insulin being issued to 0. This was happening throughout the night as I was trying to sleep. I genuinely lay there terrified that these nurses were going to kill me if they didn’t listen to me and stop what they were doing. It is incredibly frustrating.

Going into the hospital as a diabetic is genuinely scary – you really see the lack of fundamental knowledge in the area. You are constantly given things like orange juice with your meals, there is no indication of how many carbohydrates are in a meal, which would help you inject the right amount of insulin for what you eat, and the nurses frequently seem bewildered by what to do with you as they routinely check your levels. I don’t blame the individuals, but something really isn’t working in this area of care. You’re far better off at home where you can eat healthier and be responsible for controlling your own blood sugar levels.

The next morning, the surgical team came and spoke to me. “You seem well,” the head surgeon said as he approached me. “Yeah, I feel fine now. I’m just starving,” I retorted. “Well let’s cancel the scans, let you eat and get you discharged then,” he said, to my surprise. He explained that these types of blockages usually clear themselves up and then the subject is fine. I was sceptical but I accepted what he said – he knows better than I do, and I was feeling much better now. That was that. A few hours later I was let out (I did not have to pick up any medication to be discharged with so I missed the pharmacy debacle, which was a relief).

My problem since leaving the hospital has been that some of the issues haven’t gone away. It isn’t comforting to be released from the hospital with nothing – no antibiotics, no advice on what to do next time, or what not to do to help prevent it from happening again, nothing. For the first few days at home, I did feel better, mostly. Since Wednesday, I’ve started getting this heavy feeling in my stomach and lower abdomen again. When I try to eat as much as I feel I want to in order to satisfy my hunger, I start feeling incredibly sick. The whole thing has left me feeling lost, and I’ve just reduced the amount I’m eating by a lot. I feel hungry all of the time, yet still a little bit sick. It is exhausting. As a result, my blood sugar levels are also all over the place. I seem to have at least 1 hypo every night, where my blood sugar drops too low and I have to have a glucose gel. Luckily, when my phone records a low reading, an alarm goes off. If I didn’t have this, I probably just wouldn’t be sleeping out of fear that I wouldn’t wake up.

All of this is worsened by the fact that my wedding is on Friday, so I am extremely nervous that I may have another episode around then, which would ruin the entire day. There are so many growing pains with everything going on – the diabetes, recovering from the surgery and, now, mentally preparing myself for the next bout of chemotherapy. Sometimes you wish life would just give you a break. I really need it right now.

Home Again With Little Lucy

Delirium

‘Delirium’ wasn’t something I was aware of before being in the hospital after my operation. For the first 5 days of my hospital stay, I still wasn’t aware of the term. If someone had asked me to define it beforehand I’d have probably said it sounds like a term referring to someone losing their mind, or feeling very confused. Perhaps I’m blowing my own trumpet a little bit as that would have been very close to the definition, far closer than I probably would have been.

The term was brought to me in the form of a leaflet, handed to me by my fiancée Anna in the morning after I’d had a dance with the ailment the day before. This was about 6 days post-surgery and was around the time that I started to properly consider the seriousness of what had occurred during the procedure. She had the leaflet in her possession because the nursing staff had given it to her the day before, to try and help explain the erratic behaviour I was displaying. My memory of the whole thing is very hazy now, but I’m going to try and recall what I can, whilst trying to explain how I ended up there, or how I think I did. Some of the blanks have been filled in by my family members who were present during the event, so some of what I write will be based on things I’ve been told, not direct experience or memory.

It is quite difficult applying logic to a situation that, by definition, defies sensible logic. My goal in trying to do so is twofold: firstly, to try and explain my understanding of what happened to my family who witnessed my quick mental decline that day, and secondly, to shine some light on a phenomenon that I was totally unaware of before it had happened to me. Also, in the name of the blog, it feels right to document both the highs and the lows of this experience, and this was probably the most volatile event that has happened to me so far. It far outstretches any experience that I have had in my life up to that point, and I am still processing what happened. I’m not sure I’ll ever fully understand it. It is the darkest place my mind has ever been to.

Delirium is defined by the NHS as below. They define the ailment, as well as the causes of it.

‘Delirium is a state of mental confusion that can happen if you become medically unwell. It is also known as an ‘acute confusional state’. Medical problems, surgery and medications can all cause delirium. It often starts suddenly, but usually lifts when the condition causing it gets better. It can be frightening – not only for the person who is unwell, but also for those around him
or her.’

I can vouch for the definition and causes. Everything descended extremely quickly for me, and everyone around me was pulled down into that negative spiral. For my mum, fiancee and brother Greg, it was probably incredibly traumatic at the time, and perhaps still is. They also did not know about delirium, and their introduction to it was a family member spinning out of control, accusing the staff of trying to kill him, pulling out lines that were stitched into his body and screaming accusations of medical malpractice at every person in overalls who came within 2 meters of his being. It is hard to describe how things descend to that place, but I’m going to try.

To provide some context, I had been moved into an individual room a few days prior. My stomach had been very bad since the operation, and the doctors were worried that I might be harbouring some form of virus that could spread to the other patients. I think that is why I was in that room anyway; this is all very hazy to me now. The room was small and only had two thin windows which, from the angle I could see out of from the bed, looked directly at a brick wall of an adjacent building. There were lines attached to my neck, back and hands, so I could not move far from the bed. The lines in my back and neck were actually stitched into the skin, so they could not be removed to allow me to move around. This is to secure them in, due to their important function during the recovery process. It all meant that I had been within a meter of my bed since waking up from the operation. It is also incredibly uncomfortable constantly having lines attached to your body. Personally, I started to feel sub-human, attached to all these machines and relying on others to do almost everything for me. I’d only just had the catheter removed, ‘upgrading’ to the graceful world of the commode… the world of surgery is far from glamorous.

I believe it was the Wednesday after surgery. That morning, I had decided to open my laptop for the first time since my operation. I don’t think that I intentionally set out to research how a full removal of the pancreas affects the patient that morning, but that is where I ended up. The topic had started to sit heavy on my mind. Prior to the operation, I had not been warned that a full removal of the pancreas may be on the table. I’m not suggesting that this was necessary, but if there was even a 1% chance of that happening, I do think that discussing it beforehand would have helped to ease the stress of hearing that it had happened post-surgery. Again, I don’t want to sound ungrateful for what has happened, and I am not accusing any individuals of doing anything wrong, but I would suggest that in future cases, this topic should be broached in the meetings before surgery if it is a possibility. It would allow the subject to process what that may mean beforehand when they are in a stable state with a normal functioning mind. I was processing the news in a very unstable state, with a mind being clouded by all of the painkillers, general anaesthetic and whatever else was being pumped into me. I had an epidural sewn into my back, a line attached to a central vein in my neck and various drugs being pushed into my system via the other lines in my hands and arms. Trying to navigate all of that, alongside the fact that I am now diabetic and have had half of my organs removed (Warning: major exaggeration used to gain sympathy) is bound to be tough for anyone.

At the time I did not realise just how much this was all messing with my brain, but I appreciate it far more now as I reflect. Looking back, I struggle to feel like that time recovering in the hospital even happened to me because my brain was so abstracted from my normal reality. I couldn’t focus on anything – I constantly felt bored, fidgety and I genuinely felt like the situation was never going to improve. The result was a constant state of perceived uselessness, depression and an overwhelming sense that everything was descending into a place of utter hopelessness. It was incredibly difficult to deal with and with every day that passed, I had a slightly clearer mind that was trying to process these things, which was actually more damaging than good in the medium term.

As my ability to think more normally was coming back, I was still under the influence of a concoction of powerful drugs, but I could not recognise that in the moment. As far as I was aware, I was thinking and feeling as I would normally, just those things that I was thinking and feeling were far more extreme and volatile than normal. Well, I was in a time of extreme volatility, so that doesn’t seem strange, does it? In this world, it is easy to find dark thoughts and believe them as logical truths, especially if you are the type of person who has a tendency to dwell on their own thoughts. I’d put myself in that category. It is far easier to identify this now, as I sit in a more normal frame of mind, but at the time, it was incredibly scary and depressing, feeling that my life had irreversibly changed and that I was on a collision course with death, simply counting down the days until my body finally gave in to the growing list of traumas it was accumulating. I was utterly convinced that this was the new me – a person defined by inconsolable grief, anger and fear. Grief of my former life, anger that this had all happened to me without my consent, and fear that it had set my life on a journey towards destruction and, ultimately, death.

I sat Googling ‘full removal of the pancreas’ and read on multiple websites that the procedure was extremely rare, that not a lot was known about it, and that the pancreas is involved in the regulation of hormones in the body which is not fully understood, so could not be easily accounted for post-surgery. The more I read about how uncommon the procedure was, how difficult it is for the subject to adjust to life post-surgery and the drastic changes it has on your body functioning, the more I convinced myself that the surgeon had used me as a lab rat. I created a narrative in my head – I was young and healthy, other than my diagnosis, yet I had stage 3 pancreatic cancer. The situation was incredibly unusual, but that presents a unique opportunity to those in the medical field. Why not try this experimental treatment on this young, unusual subject – it is the best opportunity to see how successful a full removal of the pancreas can be, right? I became utterly convinced that the dice had been rolled by the medical staff, and that my life was the stake that was hanging in the balance.

Alongside this, there had been some tension between the nursing staff and the surgical team that morning. I think they had been trying to hide it from me, but it was palpable. That morning, the surgical team had come to look at the drains attached to my stomach and determined that they could now be removed. The drains are two bags attached to pipes which are inserted into your body. They are there to allow any excess fluid to drain out of your body. The bags then have a plastic valve end which can be opened, allowing them to be emptied out. I had a drain in either side of my stomach, one on the right and another on the left. Although they were collecting a lot less fluid at that point on day 5 post-surgery, they were still amassing a fair bit of liquid each day. After the surgical team had inspected it, they had asked the nurses to remove the drains. I could immediately tell that the nurses were unsure about doing this and felt their hesitation. I waited for a few hours that morning, but the nurses did not follow through on the request. They were speaking to each other in their native language a lot, and I could sense some unease in the air.

A little later on, one of the surgical team returned and asked why they had not been removed. I responded that I wasn’t sure. She then left the room. A bit later, I heard a conversation outside the room where another member of the surgical team was complaining about the nursing team letting down the very good reputation of the HPB unit at Manchester, which was “one of the best in the world”. The whole thing felt very manufactured and I lay there confused about why they were having such a conversation in close proximity to a patient. It was all a bit unusual. Eventually, the nurses did remove the drains, but they seemed very hesitant about it. I think they had my best interests at heart, and they felt that too much liquid was still coming out to remove them, but they are ultimately there to carry out the wishes of the surgical team, who are far more experienced and knowledgable in these areas.

Between my research that morning and the sense of tension building among the medical staff, I was starting to feel very uneasy. By the time my mum and Anna showed up to visit me at around 13:30, I had wound myself up too tightly, to a level that I could not be unwound. I was still conscious and thinking somewhat straight at this point, though. As soon as they entered the room, I asked them to close the door. I told them about my theory, how they had done an experimental procedure on me and that I was being used as a test-case for a new type of treatment that they had little evidence of whether it would be successful or not. I told them that we need to try and get me to another hospital to be treated and give me the best chance of long-term survival…this is where I started spiralling a little more into madness, and where my memory starts to get hazy. Anna and my mum were listening to me clearly at this point, though, and they were very concerned.

I can’t remember how it happened, but the staff started to realise that something was going on. As they realised the seriousness of what was beginning to occur, more senior members of the surgical and nursing teams started to show up to try and calm me down. This only encouraged me – in my mind, they were realising that their plan had been foiled and they were now terrified that they were going to be going to prison for malpractice, or at least exposed and their careers were over… That is genuinely what I thought. By the time my surgeon himself showed up, I was absolutely certain that they were terrified that I had exposed them. I started to get my phone out and record them. Accusations were starting to come – I told them that they hadn’t been managing my diabetes properly and that my blood sugars had been incredibly high. I started to demand that they show me all of my data, as they had been regularly testing my blood sugar levels which were recorded on a system. When they told me that they couldn’t because of data laws, I felt even more firm in my beliefs. They were scared that the data would expose them, I thought. By this time, I was fully spiralling out of control.

At some point, I turned and looked at the machines behind me which were hooked up to my body. This is where my brain was starting to bend reality. I thought I saw the number ‘9999’ on a monitor and thought the doctors were loading my body with insulin to force me into a coma and kill me, so they wouldn’t be exposed for what they had done to me. It is here that I panicked and started to believe that they were really trying to kill me. I ripped the stitched lines out of my neck and back, something which makes me sick to my core in my normal state of mind. The doctors all screamed out and started panicking… this was starting to get serious, and they were now treating me like a danger to myself as well as them. People do all sorts of things when in a state of delirium, including physically assaulting staff and trying to harm themselves. Of course, I didn’t know what delirium was at the time, and I didn’t see their distress as them being genuinely concerned for me. Everything was feeding my central theory – they were trying to save their skin, and my hard-hitting accusations were threatening their reputation as professionals.

Around this time, my brother Greg was strolling onto the ward to visit me. It’s here that my memory gets very hazy. I remember running up and down the corridor in the ward, blood dripping from my neck and back. Security guards were blocking the exit but I couldn’t get out anyway as it was now locked. I was crying, pleading with Anna, my mum and Greg. “Do you not love me?” I was shouting at them, pleading with them to believe me. Anna was telling me that she believed me, but that I needed to let them help me as I needed immediate medical attention. I didn’t believe her. Greg was crying now and begging me to stop. The little memory I have of it is really horrible. I can’t imagine how it was for them.

All that I really remember from this point on was feeling like I had ruined my life. I had climbed up to a place which was impossible to come back down from, or so I thought. I was convinced that I was either going to a police station or an asylum. The people who had helped me, the doctors, nurses and surgical team, wouldn’t want to help me now anyway, whether they had used me as an experiment or not. It felt like I’d dug my own grave in taking this course of action, and now I had to lay in it. I remember running up and down the corridor, my head feeling like it was going to explode. Anna was going to leave me, my family were going to abandon me, I’d ruined everything. The world was genuinely spinning. I can’t imagine what my heart rate was when all of this was going on, but I bet it was dangerously high. Amped up on drugs and totally out of control, this is where any memories I have of the event end.

Anna tells me that the staff got me a seat and told me to sit down in the corridor. I did this, but then saw a doctor coming up behind me with a needle, which made me jump up and panick. When I jumped up, I spilt some water that I had in my hand all over the floor and then slipped over violently. Finally, the doctors managed to inject me with a sedative. As it took hold of my body, I started to calm down and apologise then, eventually, I must have slipped into a sleep.

I had a lot of very unusual yet vivid dreams. They were vivid at the time, but I don’t remember them well now. My amazing brother Greg stayed with me for 8 hours that day – he was incredible throughout my stay in the hospital, visiting me nearly every day no matter how depressing my company was. I’m not sure if I dreamt this or not, but I think I remember waking up momentarily and begging Greg to get them to kill me. I thought my life was over anyway – I just wanted it to happen as quickly as possible.

One of the dreams that I remember was being stuck in a dark room. There is an episode of the dystopian show Black Mirror where they discover a new method of punishment. It is where they can manipulate a person’s brain to make them feel like they are locked in a room for hundreds, thousands, even millions of years, in a matter of seconds. Despite them not actually being locked in a room, the subject experiences being trapped for that amount of time. I had a dream that that exact thing was happening to me. My mind was screaming to wake up, but I couldn’t. I genuinely thought I’d fallen into a state of absolute madness. I gripped my head and pushed my fingers into my eyes but nothing changes. It was agony.

Rather disgustingly, whilst I was passed out, I was apparently repeatedly ‘soiling’ and ‘wetting’ the bed. The nurses were having to clean it up whilst my brother, mum or Anna, whoever was taking the shift of sitting with me at that time, temporarily stepped out of the room. It is pretty horrific to learn these details and I really debated whether I wanted to include them in here, but I think it emphasises just how dark things can get in this state. My family had to witness it and the incredible nurses probably did not even see this as a ‘standout’ event – it is probably just another day for them. I really don’t understand how they do it. Hopefully, by speaking about it, it emphasises what amazing people are working in these jobs, and how brutal the day to day reality of it can be.

When I eventually woke up, it was the next morning. Anna was asleep in the chair next to me. I thought that I had dreamt the whole thing, but I felt immeasurably happy that it was over anyway. It was only when Anna passed me the leaflet titled ‘Delirium’ that I started to realise it had all actually happened. I couldn’t believe that the hospital staff still wanted to treat me, or that my family still wanted anything to do with me. A sense of total gratitude came over me – I felt so happy, like I’d been given a second chance at life, though I could barely comprehend what had happened. I still can’t, really.

Apparently, Delirium is fairly common. I read somewhere that it happens to about 1 in 10 people who undergo major surgery. It is more common in older patients, the same as pancreatic cancer, so of course I had to experience it. I’m always looking to break down these age barriers – perhaps that makes me a hero, who knows. All I know is that being in that state was the scariest thing that has ever happened to me, and for a short period of time, I truly felt that I was experiencing what it was like to be insane, having people look at you like an unpredictable animal, unbound by any social convention or sense of self-preservation. Everything was off the table and I was certain that I had set myself on a course to total destruction – resulting in me rotting in an asylum, prison, or some other institution, with no medical team willing to help me, and with certain death on the horizon.

I want to re-emphasise the gratitude that I have for everyone who cared for me at Manchester Royal Infirmary, especially those who were dragged into this episode. I can’t imagine what it is like for them to sit through the accusations, the impulsive actions and traumatic consequences of them, but I was relieved to hear that they had commented on how surprisingly respectful I’d remained through the whole episode, never swearing or threating them with physical violence. It is a pretty low bar when it comes to Delirium, apparently. I’m also lucky to have the most incredible family around me – my mum, Anna and Greg were all incredibly supportive. Greg was back at the hospital with me the next day, and we were laughing about what happened, with the surgeon even visiting me at the same time and joining in the banter. “Still think I’m trying to kill you?” He jested as he popped his head around the door.

It is all still very strange and it feels like the little parts that I remember didn’t happen to me – almost like they are scenes from a film that I have watched or something. It is yet another chapter in the cancer journey that caught me totally by surprise, but perhaps by writing this, it might help someone else not feel so blindsded by a similar event. The words that have stuck with me from the surgeon the following day, when we were passed joking about the incident, was this – “For you, this situation is not normal. For me, it is very normal. I do these procedures every week and I hope to be doing them more. If it is what it takes to improve the survival rates, then I want it to become more common.” As if I need to prove that surgeons are well-intentioned people – their entire careers are centred around saving people’s lives – but I thought he put it so simply and beautifully. Every medical practice had a dawn where it was not widely used. If I am an early case in a type of surgery that may help improve survival rates of this cancer in the future, then I am incredibly proud to do so. Even if I am a case that proves it is not as straightforward as they had hoped, I still contributed to something. Either way, I feel proud of where I have gotten to thus far, and I am starting to feel a lot of genuine hope for the future, despite all of the bumps in the road to recovery.

An Update Post Surgery

The Road to Recovery

Where do I start? Do I talk about the operation and how a team of people tirelessly slaved away, working on my body for 13 hours, making sure that none of the tumour could remain? I wasn’t there for the surgery, so I can’t talk much of that experience, only the fallout afterwards. Do I talk about the stories I gathered as I was taken from room to room, doctor to doctor, fighting infections and numbing the different types of pain that were coming and going? Or do I talk about none of it at all, choosing to look forwards in my life for the first time since last November? “You will go and live your life now,” my surgeon said to me. Were the painkillers numbing my positive emotions too? I can’t even be happy about it; it just doesn’t feel real. My cancer hasn’t necessarily gone – I have to wait for the histology results to find out what comes next. I’m likely going to be back to chemotherapy soon.

It was hard to even think on it all too much for a few days, and I just burst into tears in the middle of the ward when I did. How has this actually happened? There was no version of events in my head where I actually survived this thing. I thought that my role in the world was to be that insignificant statistic who insignificantly died at the hands of a statistically significant cancer. You don’t boil yourself down to a statistic. Neither will your friends and family. Extend out a few more branches in the tree and you are in territory where you are a statistic, another name on a page. It’s how humans process information. It’s how we understand how good or bad something is. It’s how we make arguments about pancreatic cancer being one of the deadliest to have and how you have to be old to even be eligible for consideration. Yet, my surgeon sat and said to me in the most serious of ways, “We aren’t going to perform miracles, Dan. We can only do what we can with what is presented in front of us.” It seems that he has performed a miracle here, or has started the progression towards one.

So I haven’t been told I’m cured yet. Removing the entire pancreas is a good start, and I’ve only ever been told that I have cancer on my pancreas, so maybe it’s a really stupid thing to even suggest that I’m not. I’ve learnt not to assume anything with cancer, so I’m not going to assume anything. I’m almost certain there will be mop-up Chemotherapy, scans, and other bookmarks in the calendar that same carry a familiar type of anxiety. It sounds like the only objective is to get better for a good while though. Another surgeon who was looking after me for a while on the Sunday told me that the tumour would be cut apart the before performing some tests on it. That would help to indicate what the best next steps are in terms of treatment, as well as helping future research.

The headline really is that I don’t have a pancreas anymore. No more ripping on Dan Pan, Penny Pan Pan or Pan Can. This means that I am fully diabetic now and have been learning to interject insulin over the past few days. Alongside my pancreas being taken out, 3/5ths of my large bowel was also removed. Some major arteries were then reconstructed before I was finally put back together again.

I had a strange sensation on the Tuesday morning after the surgery. I’d been struggling to sleep and was overindulging in the pain relief button. It was about 4:30am. As I lay there; watching the nurses walk between their stations and the various beds, checking temperatures, replacing dressing and sitting on their computers reviewing data, I felt like I was in a game. They walked around with lights in their hands and shone them at exact spots for different reasons; because an alarm went off here, because they knew that they checked this this thing every 10 minutes. I started trying to learn their patterns and understand their movement, I was trying to figure out if I could fit in with them. Somewhere in the process, I alienated myself from them, and I sat there listening to the ‘moody’ playlist on Spotify and feeling lonely instead. My bed was in the corner and had a load of equipment next to it.

A few minutes later, the nurse surprise me and came over to get some equipment from the shelves next to me. I hadn’t predicted it. Damn it. “You do a lot for people you know,” I said to her as she filled up a box of various things from the drawers next to me. “We’re just here to take care of people, dear,” she replied with a smile. “It’s 4 o’clock. You need to sleep,” we were back to the games. I told her that I’d lost my headphones a few minutes prior after taking them out to talk to her. We found them together a few minutes later. It was a long night, why not waste a few minutes of her valuable time on my pointless games.

Stories are abundant in hospital, that’s for sure. My dad used to obsessively watch 24 Hours in A&E on tv here in England. It’s a show following the Accident and Emergency department of a hospital for 24 hours. It has everything that a compelling story might have – twists, tribulations, trauma. They don’t need to seek the stories out, only place the cameras in the buildings and wait. They knew that the stories would come from there. We haven’t been watching it so much these last few months. It isn’t so fun when your family is currently suffering from an ailment which affects you, very much centred around hospitals. My dad probably still does, but not when I’m around.

I don’t have enough energy to really speak at length about everything right now. Eventually, I’ll talk more about hospital and all of the challenges that came with it. For now, I wanted to think you all for the messages of support, and let you know that I’m doing well. I’m getting stronger every day and can walk outside the hospital when my family visit. I’m going stir-crazy on the ward and am hopeful that they will discharge me tomorrow so I can continue my recovery at home with my amazing family, fiancée and Lucy dog. The hospital want my insulin levels to balance before taking this final step, and we seem to have achieved this over the weekend.

I’m trying to do my best to remain grateful, but there is a lot of change on the horizon. It’s all very intimidating. I know that being diabetic will just be another thing that I’ll grow accustom too, but combined with the future threat of cancer, recovery from surgery and lack of any pancreatic enzymes in my body at all, it feels daunting. The next few weeks will be an interesting journey through these facets of the illness.

This is also the 100th post on the blog! What a momentous post to coincidentally fall into this milestone! Here’s to plenty more Ebb and Flowing (preferably without all the cancer, but we’ll see).

A Story About Surgery

The Road to Recovery

Dexter the Dog

I was meant to be in surgery last Friday but it was postponed by a week. Part of me wishes that I had not uploaded a post informing the audience of that fact, then uploaded a post in the middle of the day on Friday talking about being in surgery. That should have pulled in some views! I guess you can schedule posts on here, so if my audience knew about the WordPress functionality, they may deduce that it was all a ruse. Also, everyone that knows me personally already knew that it was postponed and they probably make up 50% of the audience of this blog, if not more. It would have surely fooled some people reading, though. Maybe I could have sat Tweeting as if I was in surgery throughout the Friday. ‘The surgeon is just clamping my stomach out of the way so he can access the pancreas. Still no eyes on the tiny twat of a tumour. Painkillers doing a good job but all the blood and organs are making me a little queasy #Hemophobic #ThatsSoSurgery’, the first Tweet could have read, to the dismay and disbelief of my followers.

All of a sudden it feels like I have cheated time. I got a similar sensation when I used to travel from the UK to America for work. It always felt like I had gained a few hours back for my travelling, with the time difference allowing my watch to jump back 5 hours upon landing. Of course, you lose that gained time when you make your way back to the UK, assuming that you ever go back. In a similar fashion with the surgery, I will lose another week further down the line recovering, where I would have felt better if I had been in surgery last Friday. That is probably worded a little confusingly, but hopefully you get my point. Now that I seem to have perfected the art of time travel, I may as well use some of my meaningless time to write another blog post, after a mini-hiatus.

I was shocked to read the news about Japan’s former Prime Minister, Shinzo Abe, being shot on Friday. Even more shocking was waking up to the news the following day that he had died. I spent a good 30 minutes in bed looking through articles from every news outlet I could find asking one simple question of them – why did it happen? Why did this man decide to shoot the prime minister dead during what seemed like a routine campaign speech? Further to this, why did he go to such lengths, creating his own firearm, just to carry out such a malice act? I couldn’t find anything provocative in the topic of speech, or even in the prime minister’s history in office. If anything, it seemed that he gained a lot of respect during his time in office, both domestically and on the international stage.

The answer to the question regarding why he created his own firearm seemed more straightforward – Japan has tight gun laws, so guns are hard to come by and gun crime is extremely low. Hence, if you want to shoot someone, you will struggle to get hold of a gun, so making one may be easier. Creating your own firearm requires a lot of planning, providing the potential perpetrator more time to get some perspective on what they are preparing to do. This person really wanted to kill this man, and no amount of time was convincing him otherwise. He followed through with the heinous act until the very end.

In the most human of ways, I was yearning for a concrete reason as to why this man decided to do this, as if everything is that simple. We humans like to organise the world into stories – they provide us with structure and allow us to better understand an event. In understanding the event, we can put it to bed in our minds, by providing an ending to the story and feeling that it was concluded. Sometimes we don’t find out the ending and it bugs us, but that also makes it an effective technique in storytelling – leaving it down to the interpretation of the audience, allowing them to create their own ending based on what they have learnt of the characters, events and mood of the piece. On other occasions, we may not like the ending of a story, and we find it jarring to accept what happened. By not agreeing with the ending of a story, we may discover more about ourselves and why we don’t accept the ending. Sometimes it may be obvious, like when our favourite character is killed. Other times it is less obvious, and we debate with friends over it, arguing that this or that should have happened differently.

I’ve been reading an interesting book recently called The Loop which talks a lot about human behaviour. One of the most interesting points that I have read is about how the brain processes information to ease the load on our cognitive functions. There are so many things occurring in the world around us that if we tried to perceive all of them at once, we would never get anything done. We would be overwhelmed by information, unable to make any meaningful decisions in response to it. To solve this problem, the book states that our brain takes all of the data from our senses and processes that information into a ‘story’ which we can process quickly. This allows us to make decisions quicker than we would otherwise be able to, which was critical to our survival when we were not organised into societies like we are now. If you are about to be attacked, you don’t have time to pay attention to the ambient bird song around you, or the storms approaching in the distance, you need to make a decision about the main threat as quickly as possible to better guarantee your survival. Will you run or will you fight? You’re usually already doing one before you have consciously made the decision.

I’m not sure how accurately I am describing these things, and whether they are mere theories, as opposed to things that are properly ‘proven’. To an extent, I think some of these theories are hard to conclusively prove as 100% correct, other than presenting evidence which seems to back them up. It makes sense to me, though. The fact that we seem so predisposed to enjoy stories and find predictable patterns in the world makes me believe it even more. Those things satisfy our brain because they make us feel safe, as if we understand that to be the natural order of the world. We like to think that things are predictable and follow a plot – it helps us drive our cars every day without worrying about the prospect of crashing, and it allows us to go about our lives without constantly worrying about having a heart attack at any random moment. We struggle to comprehend when a study is done, and the results tell us that our behaviour is irrational. Instead, we choose to believe that if we were in that study, we would have behaved differently, beating the odds and being one of the few that saw past the tricks. When we put a bet on a football team to win a game, they lose. When we decide to save the £5 we were going to bet on them winning, they do win. We curse the universe. Why does this always happen to me?

There are now theories about why the gunman carried out his heinous plan to kill the Japanese prime minister. Apparently, his motive centres around a political movement called the Family Federation for World Peace and Unification, or the Unification Church for short. The gunman claims that his mum made a huge donation to the Unification Church in the 90s shortly after she joined, which put a huge financial burden on his family. He claims that Shinzo Abe has ties to the Unification Church, due to him speaking at an event (or a few events, it isn’t very clear from the reading I have done) organised by the them. Police have said that upon searching his house, they found other handmade guns. The gunman apparently attended a few other events that the ex-prime minister had spoken at, indicating that he has had a fascination with the prime minister for a while. It is certainly unwinding to be an interesting story, one that almost sounds too unusual to be a feat of real life as opposed to fiction. Perhaps I am simply overindulging in the story.

I have been creating a few of my own stories these past few days; I wish I could say they were happy ones, but they aren’t. It has been much tougher this week compared to last. Last week, I felt good until I woke up on Wednesday. From that morning, I felt tense, stressed and worried about the upcoming operation. The call then came on Thursday morning informing me that the operation was having to be moved, and it took me another few hours to fully decompress. I did, though, and I spent the weekend enjoying the nice weather, seeing friends and family, watching the Wimbledon finals and generally enjoying the impromptu time which was afforded to me by the operation being moved. Sunday night brought an end to that luxury.

Things have been hard since. A few things stick out in my mind which demonstrate where my head has been the last couple of days. At some point on Sunday, it struck me that I should have been in a high dependency unit at that very moment, with a wound across my stomach and tubes going in and out of every part of my body. It then occurred to me that all of this will still be happening to me exactly a week from that moment. That thought didn’t sit well with me. I wanted it to just be here so I could get on with it and deal with it. No matter what I did, my mind went back to that place. It is still frequently going there. Last week it hadn’t bothered me as much – even in my tenseness, I was eager to get the operation done. It wasn’t due to me fantasising about what state I’d be in this time next week. Now, these thoughts are haunting me quite frequently.

Next, my mum’s dog Dexter has been hunting in the garden this week. He is a spaniel, so has strong instincts to sniff out and dispose of other smaller animals that he regards as inferior to him. Monday night he found a hedgehog and was running around the garden with it in his mouth. My sister eventually got him to drop it and put him back inside. The poor thing was curled up on the soil, blood speckled on its wood-brown spikes. It was breathing heavily. We weren’t sure if the blood was from Dexter’s mouth, wounds on the hedgehog, or both. We hoped it was from Dexter, but doubted it all was. After standing over it with a phone light for 10 minutes, we decided to go inside and return a little while later to see if it had left. 20 minutes later we returned and it had left, leaving only small blood stains on the strands of grass next to where it had been cowering. We couldn’t find it in the garden anywhere, and Dexter hasn’t run around with a hedgehog corpse since, which would have certainly happened if it was in the garden. I’ve convinced myself that the hedgehog is still alive somewhere as that ending makes me feel better. Unfortunately, I know that it is probably unlikely to be true, and the poor thing probably ran off to take refuge somewhere else away from the danger, only to suffer and die. That thought isn’t nice.

The next evening, last night, I was soundly asleep with all of the windows open. There is a heatwave in the UK at the minute and it is incredibly humid, especially during the night. I woke up to the sound of my dad shouting at Dexter. Earlier on in the day, we noticed a baby bird hopping around on the ground in the garden. My sister said that this is normal when they leave the nest as it takes them some time to learn to fly. We watched it hop around before it took refuge in a small corner of the garden. It was incredibly cute. Knowing where it was, we kept the dogs away from that spot. My sister had then let the dogs out in the front garden that night to go to the toilet before bed. She thought that the front garden would be safer than the back, as the back garden was where we had seen the baby bird and where the hedgehog had been the previous night. Dexter had apparently made some unusual sounds, and she had rushed over to find that he had the baby bird in his mouth and was shaking it. I’d been woken up by my dad shouting at him to drop it. He eventually did, and the bird was still alive, though my sister doubted it would be for much longer.

That happened at about 00:30. I lay awake for a while afterwards. In my head, I watched as the bird’s bones and feathers were compressed by the dog’s jaw. It bothered me that I lay there peacefully in bed, but outside there was a young creature probably calling out for its mother; the last gasps of helplessness before it succumbed to its injuries. All of a sudden, I felt a strong connection to it. I saw myself laying there during the operation. I felt the surgeon saying the words to the other specialists in the room – “It’s worse than we thought. What can we possibly do to save this young man’s life?” I felt the void open in my mind as I sat there in the hospital bed days later, listening to the news that they have tried what they can, but that the tumour is more established than they could have anticipated. At some point among this noise, I fell asleep, putting an end to the bleak safari that I was taking myself on.

It was short-lived, though. I woke up at 03:00 with a bad indigestion-type pain in my abdomen. That was familiar – it was the original symptom that I had tried to get diagnosed for over a year during the Covid lockdowns. The familiarity provided no comfort, quite the opposite. My body was mimicking my dark fantasies from a few hours ago. It was writing the story for me, telling me that something has changed, that things have gotten worse. I rolled over every few minutes. Each time I closed my eyes and told myself that I was being stupid, but that voice was quieter than the other one. “It’s spread,” it screamed. “You know that it’s spread!”

As I lay there, I started obsessively thinking about the tumour surrounding the artery. I thought about it strangling it, spewing the cancer throughout my bloodstream and forcing tumours throughout my body, wherever it cared to devise them. I felt like I could feel them. It’s the most sinister feeling I’ve ever had about the cancer. I’ve felt scared before, but I’ve never felt so inwardly disgusted by own my body. It felt like the enemy. My mind was wandering; I wasn’t viewing this story as one with a hung ending, providing the potential of different endings, some good and some bad… I was viewing it as a conclusive story – the cancer is spreading, the surgery will be unsuccessful, I won’t recover from this.

Today, as I drove back from an appointment at the hospital, I noticed a single raindrop land on the windscreen of the car. It felt pronounced, yet inconspicuous. I sat waiting for another rain drop to hit, but it didn’t come. “Did you just see that single raindrop?” I said to my mum. It fascinated me. Then, another single raindrop hit. A few seconds passed, and the storm came. A flood of thin rain dotted the windscreen. I smiled to myself. “That was so strange,” I announced to my mum, wondering if she knew what I was talking about, or was just entertaining me as a show of support for my deteriorating mental state.

For whatever reason, I seem to be finding a lot of stories in the world around me at the minute. A lot of those stories are not going in a good direction, probably influenced by the stresses of the looming surgery, and a return to that tense state that I found myself in last week. The raindrops on the screen left me in suspense – what was going to happen? Why did a single droplet reveal itself right in my line of sight? When the rain finally came, I felt a rush of adrenaline as the story concluded before my very eyes. I had been scanning my mirrors to see if the raindrop could have come from any trees by the road. There weren’t any. For a few seconds, it baffled me. Then, when the rain came, I felt relieved.

Maybe there was a chance that my story could end with a positive outcome. Maybe the tumour will be different to how it looked on the scan; maybe they will even be able to remove the whole thing in the surgery and carry out a full Whipple procedure. Even if they don’t, the NanoKnife could do a serious number on it. NanoKnife may even get rid of it, even if the surgeon was reluctant to emphasise this point, due to a lack of evidence of NanoKnife being used to treat pancreatic cancer. I just don’t know the end of the story yet and I need to stop trying to predict it based on my negative thoughts. I’m here for the ride either way so I need to focus on enjoying it… It just seems impossible, sometimes.