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.

Sonder

‘The profound feeling of realizing that everyone, including strangers passing in the street, has a life as complex as one’s own, which they are constantly living despite one’s personal lack of awareness of it.’

Wikipedia, Definition of ‘Sonder’
Manchester Royal – 10 Days Post Surgery

I’m sure the title of this blog post will be met with glee by some of my closest friends, so I may as well get the story out of the way. When I was 18, I learnt the word ‘Sonder’ for the first time. I can’t remember where I heard the term; I have a suspicion that a band I liked put out a song with that title, but I’m not sure what band and I don’t have any recollection of the song itself. I quickly looked up what the word meant, and its definition immediately struck a chord with me, as it perfectly framed something that I had thought about many times but had never managed to properly define. It is such an interesting concept and one that still occurs to me frequently.

The most recent time it occurred to me was when I was sitting in a traffic jam earlier in the week. There were roadworks on, and some temporary traffic lights were in place to control the three-directional traffic. In a classic case of ‘The World vs Me’, I watched as the lights seemed to let every car come through from the other directions, then only allow about 5 cars through from my direction before turning red again. I was getting wound up despite having nowhere to be, and it all was pretty inconsequential whether it took an extra 5 minutes for me to get through these lights and get home. At some point, I became cognisant that I was being stupid, and I started telling myself that it did not matter and that I was one of many people who were experiencing the exact same thing at that moment. Then I started to think about the fact that someone else might actually be late for something in that queue – a spouse’s birthday party, picking their child up from school etc. Maybe someone was sitting in that queue after having a horrible day at work and knew they were returning home to an empty house, after recently getting divorced, or some other miserable scenario. I started romanticising the idea that my life wasn’t so bad, and that someone else in this queue was probably dealing with something far worse than me, and that I should use this time to just relax for a few minutes. It helped me gain some perspective, even if the scenarios were completely imaginary. I actually managed to forget that I have cancer for a few minutes, and was even claiming to have an enviable life because I didn’t have anything to get annoyed at these temporary lights for, other than the mild inconvenience. If only that was the measure of success in the world… I’d be a bona field Buddha by the now if it was.

Anyway, back to the story. Young, 18-year-old Dan, was totally in awe of this new construct that he had discovered. So what did he do? He got it tattooed across the right side of his chest… because why wouldn’t you do that? The word ‘Sonder’ awkwardly lay across my chest in a curly font for no real reason other than “I liked the definition.” It was my first tattoo, so part of me wanted to see what it felt like getting one too, and perhaps that made me more willing to randomly get a word tattooed on my chest. I was yearning for any excuse to get a tattoo now that I could legally do it.

I’ve since had it covered up. Not because I was ashamed of it, it just looked quite lost having a single word on my chest, and it was difficult to get things done around it without it looking strange. So, it is no longer there. I haven’t lived it down with my friends, though, and one of the common jokes was that it actually read ‘Sandra’ instead of ‘Sonder’. Despite never having dated anyone called Sandra, the joke was that I got an ex’s name tattooed on my chest before we broke up. I did play my own part in perpetuating this joke as I did find it very funny, and would regularly tell people that I had an ex-girlfriend’s name tattooed across my chest. Sometimes it is better to just indulge in the joke as opposed to becoming a victim of it. I also found the joke pretty funny, so that helps.

The ‘Sonder’ Tattoo – During Masters Year, 2015

I’m not sure why I thought the best course of action after discovering a new word I liked was to immediately get it tattooed on my chest. Whether I thought it made me more interesting, or whether I liked the way that this obscure word might help explain something about me as a person, I’m not really sure. I can’t remember how I thought then, and I struggle to relate to a lot of my actions throughout this period of my life now. After all, I was a very different person then, one who drank to extremes and actively ignored many uncomfortable truths about myself. I probably still ignore some uncomfortable truths about myself, but some, like the fact that I have cancer and am statistically very likely to die in the next 5 years, I feel like I’m pretty good at facing… maybe I’m even too good at facing those uncomfortable truths now, and the more pertinent challenge is learning to ignore them and just enjoy myself.

The thing is, I have a lot of tattoos now, and I don’t really understand why I got many of them, but that doesn’t mean I don’t like them. They capture something about myself, from a certain point in my life. I try not to regret any of them, even the one that I got covered up… Poor Sandra; the ex that never existed. As a concept, though, the term ‘sonder’ does still mean a lot to me, both because I decided to get it tattooed on me at some point, and because it did have such an impact on me upon finding out its definition.

The motivation for writing this post came at 4am yesterday morning, as I lay in bed struggling to sleep. For some reason, I decided to start making my way through some of the comments that have accumulated on the blog. I’ve had a backlog of comments which have built up over the past 2 months since I had the surgery. At first, they built up because I didn’t have the energy to respond to them. Then they continued to build up, and I continued to not answer them as it felt disrespectful to the older comments if I only answered the newer ones. Then, I had so many to respond to that I just shied away from the task. I haven’t been posting too often anyway, so I assumed that my readers weren’t taking my absence to heart. It must have been obvious that I was struggling, I thought, and that made me feel better that I had not been responding. I was struggling, so it was hardly a lie. I still am, but it’s getting easier.

Well, as I lay there unable to sleep, I decided that the time had come to start responding. I’m so glad I did. Although I had read all of the comments before, most of them whilst I was still in hospital, or only recently after I had got out, I’m not sure I had properly considered what many of them were saying. People can be so incredibly supportive – I felt really touched as I made my way through them and started responding. It got me thinking back on the concept of sonder and how profound it is.

We get so caught up in what is going on in our own lives that we can easily fall into the trap of thinking that we are truly alone in whatever struggle we are engaged in. That feeling of solitude can be detrimental to our well-being; sometimes more so than the struggle itself. I’m lucky that I have the blog, and this stops me from falling into such a trap so easily, as I have a small network of people who frequently reach out to me, with very similar experiences to the ones I talk about. It still surprises me just how similar some of the experiences that I read about are to mine, though. One person had recently commented on the blog stating that they had a total pancreatectomy (a full removal of the pancreas) only 8 weeks ago. I had the same procedure only 10 weeks ago. In the hospital (where I did suffer from feeling truly isolated and had nothing but time to dwell on my circumstances), I fell deeply into the feeling that I was alone – that what was happening to me was not being experienced by anyone else in the world. That feeling is crippling. It dragged me to the deepest pits of the human experience, resulting in an episode of delirium and some of the darkest thoughts I’ve ever had.

As I read that someone else had experienced the same surgery as me only 8 weeks ago, only a few weeks after my surgery date, I almost felt giddy. It feels sort of sadistic to admit that I was happy to read someone is going through what I am, especially knowing how difficult it has been. That shared experience goes a long way in normalising what is happening to me, though. Not ‘normalising’ in a negative way – not that you ever want to ‘normalise’ suffering from cancer, despite it feeling very normal when you see how busy the oncology wards are at hospitals – but normalising it in a way that makes it feel just that… Normal. At times, the most difficult part of going through everything that I have with pancreatic cancer is the feeling that I’m the only one going through it, due to the constant reminders from health professionals that “not many people your age get pancreatic cancer,” and the fact that “it is very rare for someone to successfully have a surgery like yours.” Even the latter, which is meant to be something positive, doesn’t feel positive when you’re still reeling from the surgery months later, struggling to manage the aggressive form of diabetes now bestowed upon you and still having to visit the wound clinic every day to change the dressings on your abdomen, because the wound still insists on bleeding to this day. Thinking that someone else is probably experiencing these same frustrations right now just makes me feel less abnormal. It is strangely comforting.

The problem with seeking out these types of shared experiences is that sometimes you find something which has the opposite effect. After spending about an hour responding to comments, I decided to look on Twitter, a platform I have been mostly ignoring since the operation. Due to me following a lot of cancer-centric pages and people on there, the algorithm has pinned me down as a real cancer-loving fellow. It is essentially all I see in my feed now. It brings a mix of personalities – the positive ones, the grieving ones, the defeatist ones, and a whole spectrum in between. Unfortunately, I stumbled across the below post at about 5am.

Considering I have scan results later today on Thursday, around 10 weeks after my surgery, this isn’t exactly what I wanted to read today, especially at 5am when I am feeling frustrated and tired. I’ve been comforting myself by saying that the scan can’t possibly pick anything up this quickly, and must just be a process thing to allow me to start chemotherapy, but this post made me think otherwise. I get that it is probably based on real experience, and I know that in most cases my cancer does come back in the form of metastasis to another part of the body, but what a bleak way of looking at things. Hoping to be cancer free should not be something worth criticising, I would hope. Let someone dream – hope isn’t always equivalent to denial. You can both hope to be cancer free and remain that way, yet know that it is unlikely to be the case. This is the world I find myself in – hoping I’ll stay cancer free, yet knowing it may, and probably will be, futile. Perhaps I’m just feeling a little defensive after an unwelcome dose of reality.

Still, the concept of sonder, where everyone has their own view of the world, and where everyone is at the centre of their own universe, can be incredibly comforting when you are going through hardship. No matter how bad things feel for you at any given moment, there is always someone going through something similar. Whether you seek those people out and communicate directly with them, through the internet or some kind of support group, or just allow the thought that they exist to comfort you, I hope it does comfort you when you are feeling low. If it doesn’t, I hope you have at least enjoyed reading about the concept of sonder, and next time you’re sitting in a traffic jam, it encourages you to think about all of those other cars and their occupants, and how they’re probably just as angry as you are about having to wait. I might even be in the car behind you…

The concept of sonder reminds me that these things that are bothering me are not unique to me. There is a whole network of others currently lying in bed, considering the fact that they have scan results for their own cancer later today. Some of them may have more on the line than me. I don’t really know what bad results would mean for me… another tumour? What would that actually mean? Different chemotherapy? No chemotherapy at all? Who knows. Someone is probably just being diagnosed for the first time this second, and I don’t envy them at all. That first diagnosis is soul-crushing. The words which trigger a plethora of existentialism, and start a new chapter in life; one of hospitals, sympathetic looks and a whole load of “I’m glad that isn’t happening to me”’s, even if most of them are probably only said in other people’s minds… Because if it isn’t happening to you, then you should be happy that it isn’t. Why wouldn’t you be? You should be glad it isn’t happening to you… I wish it wasn’t happening to me.

But I’m equally glad that it is happening to me and not to either of my parents, my siblings, my wife or any of my friends. Anyway, it is happening to them in a different way, and even that is hard for me to process. Let’s just hope that the scan is clear, so I can get on to the mop-up chemotherapy, and then push through to being ‘cancer free’, for a while, at least.

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

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).

Last Thoughts Before Surgery

The Road to Recovery

‘You wanna move mountains, go ahead
I think I’ll suffocate instead
A change of scenery won’t tame
The endless earthquakes in my head

So I’ll suffer through
A means to an end, it’s all I can do’

This will be my final post before I go into surgery on Friday. I would imagine that it will be at least a week before I post again, if not longer. I’ve been told that I will be on a high-dependency ward for the first few days. Once I am cleared from that ward, I will be moved to a more routine one for around a week. Of course, it all depends on what is done during the procedure, how well I recover and whether there are any complications along the way. If a Whipple procedure is possible, the impact will be much greater on my body than the NanoKnife.

As the dietician told me, the Whipple involves the surgical team creating 3 new joins in the digestive system. Hearing the phrase ‘new joins’ in relation to your digestive system is a little unnerving; I can’t say that it is an attractive prospect of surgery. The fact that the Whipple would probably be my best chance at getting rid of the cancer however, makes the concept of having new joins in my digestive system a very attractive thing indeed. Join me up, doc… that felt a little weird to type.

Cancer is always pulling you in a million directions. Your standard of life changes so much that you find yourself feeling grateful to be eligible for major surgery, strangely looking forward to potentially having your digestive system rearranged like a hamster run. Of course, the alternative, to not have an operation and allow the cancer to grow inside your body unabated, is most definitely not better. Imagine telling myself a year ago, “Hey Dan, in 12 months you’ll be eight months into treatment for stage 3 pancreatic cancer and looking forward to an operation,” I’d probably have replied with a laugh and a “Who would look forward to major surgery?” I also thought I was immune to things like cancer 12 months ago because nobody in my family has had it. I thought I was invincible so long as I was either training for an ultra-marathon, or actually running one. Turns out that running ultra-marathons doesn’t actually make you immune to cancer. It probably makes your body a little bit better at fighting it, though, so it was still worth something. Hopefully. I enjoyed it anyway so it was worth every second.

I say that I’m looking forward to surgery. I’m not. That probably isn’t a surprise. It would be short-sighted to not acknowledge what a privileged position I am in to be offered this opportunity, though. There are people that read this blog regularly who are not in the position I am in, some who have been definitively told they are inoperable. My surgeon told me that to the majority of oncologists/surgeons, I may have been deemed to be inoperable given the circumstances, but luckily I am with a forward-thinking and optimistic team who do see opportunity here. I am grateful for that, and thus, am looking forward to being afforded such an opportunity. Am I looking forward to going through it, though? Hell no. Am I looking forward to putting my family through it? Hell no. It isn’t good for anyone involved, but it has the potential to change everything.

With a Whipple procedure unlikely to be a possibility, it’ll probably be NanoKnife. Although that carries a smaller recovery time, it still requires the surgeon to cut into my abdomen and play around with the organs there. Clamping this, cutting that; the scene doesn’t inspire a lot of enthusiasm in my brain. Then I remember that one of the things being cut is the tumour itself, and all of a sudden I get all evil and masochistic. “Do your worst, surgeon! Make him pay!” I feel like rubbing my hands together and snarling as I grin, staring at my own stomach. I’d only be cursing my own body, though, and I will eventually pay a price for whatever is done to the tumour. Whether that price is recovering from a successful removal, or recovering from electric pulses being applied to my pancreas, is yet to be seen. Either way, I’m sure it is going to suck at least a little bit in the days, weeks and possibly months afterwards.

I don’t like the war analogy when talking about cancer, but it can be hard to ignore. It’s hard not to liken yourself to someone fighting against an enemy force, even though you feel like a bystander in that war the majority of the time. You attend appointments, anticipate scan results and cower whenever the hospital calls you, but you don’t do a lot else to contribute to the process. Your war is usually with yourself – keeping your head up, finding a way through the painful days and doing your best to sleep well at night. It’s a war of attrition, but the cancer doesn’t have a brain to disadvantage it. Your brain will do everything in its power to attack you. Mine has been telling me that my neck is swollen, that it’s got in my lymph nodes and that my abdomen hurts more than usual. Sometimes, I wonder who’s side it’s really on.

It doesn’t help ignore the war analogy when you find yourself packing your bag the night before, knowing you have a critical period ahead of you. Last night, I was packing my bag and responding to all the lovely messages I’ve been sent. The war analogy felt real. Now, as I write this, I sit in the car on the way to hospital. It’s mostly silent… anticipation hangs in the air. I get the feeling that people feel more anxious than they’re letting on; you can sense it as we sit listening to the music playing from the speakers. Everyone is a sitting duck in their own head.

Anna has the password to the blog’s Twitter account, so that’s probably the best place to find an update soon on how things have gone. Thank you to everyone for the support. I will get back to all of the blog comments once I’m feeling well enough post-surgery! Thank you for continuing to read and I hope I’ll be coming back with some positive things to say next time I’m writing.

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.

A Bump in the Road to Surgery

The Road to Recovery

The Last Supper – 05.07.22

Nothing is straightforward with cancer. I was driving in my car with my brother Alfie this morning when I got a call from an ‘0161’ number… Manchester’s area code. “Oh no. That’s probably the hospital calling,” I said to my brother. My jaw was already tensing up. What is this going to be… My surgery was scheduled for 7:15am on Friday 8th July – tomorrow morning.

I answered it on the hands-free system in the car and immediately recognised the voice to be that of the surgeon. My brother was sitting next to me and could hear everything as we drove down the dual-carriageway heading to the shops to pick up an online order. I always find it hard to recall the exact wording of conversations, especially ones which give me so much anxiety that I worry my stomach may pop out of my mouth. I’ve spoken to my brother about the exact wording a few times since and have landed on what I think is an accurate account of it.

After the usual pleasantries, I approximate the first sentence from the surgeon’s mouth to be this: “We’ve been reviewing your case this morning and we have some unfortunate news… your surgery can not go ahead this Friday,” he said. The brain has an amazing capability to run a million scenarios in a millisecond when it concerns something of high severity. My life is ultimately in the balance here, so I’d consider this to be of pretty high severity with regards to how important it is to me. In that split second that he paused, I had concluded that they had finally reviewed my more recent scans, that they had seen a spread, or determined something was worse than they originally thought, and that I was now destined to die within a week (the last part may be a slight exaggeration).

“There is a national shortage of the NanoKnife needles. We can’t get any in time for the surgery tomorrow. We’re looking to move your surgery to next Friday,” he continued. He was really apologetic. At one point, he even said “I know you will have been looking forward to the surgery, and I was looking forward to it too.” I can’t remember what my response was to this, but it has made me laugh a lot since. I love the idea of my surgeon sitting at home, excitedly reviewing his calendar for all of the different surgeries that he has going on that week. Upon seeing his next Whipple, the procedure I may be having, he gets giddy and says to himself “Yes! I get to do a Whipple on Friday! 10 hours of surgery to kick off the weekend! Woohoo!” He carries himself in such a professional manner in real life – I think that’s what makes the image so funny… and the fact that he described himself as ‘excited’ for the operation, of course. I’m sure that he was looking forward to it for the life-saving potential that the operation could present for a fellow human-being, but it is more fun to pretend that he was looking forward to it because he just loves scalping away at people’s organs. It sounds quite sinister when put like that.

Sinister seems to be an accurate description of the pancreas more generally. Ali Stunt, the CEO of Pancratic Cancer Action, told me that surgeons need a lot of experience before being allowed to operate on the pancreas. Her reasoning for this was that the pancreas is a fleshy, buttery texture, which makes it awkward to operate on. It also has a major artery around it, the one which my tumour has befriended and continuously hugs (to my dismay). As if all that wasn’t enough, it is also in a really awkward place to access during surgery, sitting behind other organs. The head of the pancreas is in a particularly awkward place so, of course, that is where my tumour decided to set up camp.

Ali then described it as a ‘weird’ organ. After hearing what she had to say about it, I thought it was a bit of an understatement. I decided in my head that I hate the pancreas even more than I did before. Not only is it a spiteful bastard, which once inhibited by a tumour stops you from digesting fat or regulating your bloodsugar levels properly, but it is also a creepy texture. Sinister. Creepy. Spiteful. All words that I hope no one ever uses to describe me, and I’m sure you hope no one uses to describe you either.

Most people probably don’t think about what their pancreas is up to even once a year; I wonder if mine is bothering to do anything about once every 5 minutes. I constantly have to assess my own stools to determine whether they are floating or beached, both indications that my body hasn’t absorbed the oil from the food. It is all very undignified. If they are either of those things, I have to think back to what I had eaten the day before and how much of my Creon supplement I had alongside it. I then have to increase it the next time that I eat that food, or something similar. Nothing makes food more enjoyable than constantly wondering how much fat is in it, how many Creon that fat translates into, and whether it’ll be enough to make my stools not float the next day. Perhaps I should start talking about this in detail every time I am eating, with everyone sat in close proximity to me. That’s one way to get yourself scratched off the invite list to every dinner party that you may have been invited to that year. I’d probably still get invited until after my wedding at least – no one wants to start a tit-for-tat invite war when there is a wedding on the horizon… it makes far more sense to stop speaking after they’ve drained me of all the food, booze and good times that they can; before the cancer potentially gets too serious and they have to ‘be there for me’.

Anyway… the surgery has been moved to next Friday, July 15th. It was a relief to hear that there wasn’t any bad news about my cancer spreading or surgery not being a possibility, but it was hard to calm down from the tense, anxious-filled state that I had found myself in since Wednesday morning.

Tuesday evening was the final plan I had before surgery. Me and some of my good friends went out for a meal at a local Italian restaurant. The table was set out awkwardly, making it feel a little like The Last Supper. I’m not suggesting that I am Jesus here, but I guess I would be in these circumstances. That means that someone in attendance was the snake who gave me cancer, if I am remembering and applying the story accurately. I’m probably not.

It was a lovely evening and we all laughed a lot. That night, I struggled to sleep. It was all over; nowhere left to hide. The next thing in my calendar on my phone read ‘Operation Day’. Finally it was coming, but I had another 48 hours to wait before it would. If I could have sold away those 48 hours until I was laying on that operating table and counting down from 10, I would have. All I wanted was to be knocked out. Every minute until then felt like torture if I gave myself enough time to think about it. I was trying to keep myself busy with work, baking and relaxing with family, but it was getting harder. Surgery was on my mind and my mind was on surgery.

Backing down from that place today was hard on me mentally. The tenseness did not go for a few hours. I needed to amp myself up as the surgery was approaching faster. Now I had to deflate myself again. The surgeon knew that, I’m sure. That is probably why he was so apologetic on the phone. It seemed very sincere. Now, I have to reset the clock in my mind. Another 7 days which I need to fill with more plans to distract from the surgery… I’m sure I can have a good go at that. The thought occurred to me that it is another 7 days where my cancer may spread, unabated by any treatment. I’m getting better at fighting those thoughts, but they still come sometimes. Worrying about it spreading won’t make it any less likely to happen, though, and I’m sure the risk of that happening in an additional 7 days is low… if I was warned that the chemotherapy side-affects can last for 3 months after the treatment ends, I’d hope that means that the chemotherapy is still doing something for that time too. Hopefully…

I wanted to keep this post short so all those that I haven’t spoken to personally know that I won’t be in surgery tomorrow, without having to read 3,000 words of me chatting my normal nonsense. Of course, I had to indulge in a little bit of nonsense – 1,600 words of it to be exact. It is disappointing that it was delayed, especially so last minute, but it can’t be helped. There are plenty of bumps in the cancer road; this is just another one of them. At least I get another week to run, weight train and eat as much as I physically can. I made the below white chocolate and raspberry cheesecake to help my weight gain last night, and it should definitely do that.

Thank you for all the lovely messages today and over the last few days – I’ve felt the support coming from so many places, and in so many different forms – from thoughtful hampers to heartfelt messages. They all mean the world to me and I really mean that. If this means that I get a whole second round of lovely messages and hampers next week, so be it. I am a true martyr, I know.

Me and My Brother Celebrate Finishing Our 5K – 07.07.22

Prescribing Pizza

The Road to Recovery

Lucy Begging for Creon

Another day, another appointment. Today it was with one of the dieticians at Manchester Royal Infirmary (MRI). It was extremely useful and I recommend to anyone who has a Hepato-Pancreato-Biliary (HPB) disease, such as Pancreatic Cancer, to get in touch with a dietician from their hospital as early on in the treatment process as possible. I feel like I have had drips of information from other parts of my treatment, but nothing like the level of help that I received today. A lot of the strategies and knowledge I have utilised so far have come from research that I have done myself, or through discussions with other cancer sufferers. There was a really useful call that I joined with Pancreatic Cancer UK which lay out the fundamentals of Creon and why I need to take it, but that was a group call; having a 1-2-1 with a dietician allows you to dig deeper into the specifics of your individual case. No two cases of cancer are exactly the same after all.

Not only did I learn more about diet whilst suffering from pancreatic cancer generally, but I also learned a lot about diet when approaching a major surgery. Want to know the good news or the bad news first? Let’s get the bad news out of the way first… My assumption that getting as healthy as possible before surgery, by eating healthy foods and losing some weight, was totally wrong. Solid stuff, Dan – typical know it all idiot deciding that you know everything about the world and jumping to conclusions.

It turns out that the average person who has had a Whipple procedure will lose about 10% of their body weight post-surgery. That means that you want to put on weight before surgery to try to minimise the impact that this has on your body. Even if you are not having a Whipple, you will still lose weight after a major surgery due to the abundance of drugs and suffering appetite during recovery. Of course, I am assuming that you are a healthy weight before surgery; if you are overweight, I don’t think the advice would be the same. Then again, I’m not sure – I’ve had a single meeting with a dietician, so you probably want to take everything I say with a pinch of salt (and a whole trough of full-fat cream if you are trying to pile on weight before your own Whipple procedure, like I now am).

The good news is that I now get to eat whatever I want for a few weeks! Success! I’ve been encouraged to give away absolutely none of the cakes I bake and to eat them all myself. I essentially have a doctors note telling me that I NEED to eat as many calories as possible. Not only that, but I was given a leaflet which instructs me to eat pizza, cheese and crackers and fatty snacks like scones. It’s unusual to find myself praising surgery or cancer, but I have to give them both a tip of the hat here. I’m not sure I’ve ever heard medical professionals advising me to eat pizza; it feels like a trap.

My goal is now to turn up to the surgery, step onto the scales, and see the nurse’s eyes widen as she records my weight. “Two seconds sir, I just need to check something with the doctors,” she says, trying to hide the panic in her face. I’d stand there with a smug smile smudged across my face. Next thing I see is the doctor running around the corner – “Hello Daniel. It appears your weight has doubled in 10 days – how on earth did you manage such a feat?” He’d ask. I’d proudly reply “I started to blend scones and cream together to drink alongside my 16″ pizzas… and that is just my breakfast routine.” They’d praise my ingenuity before informing me that they can no longer proceed with surgery as I have eaten myself out of qualification… you win some you lose some, I guess.

In my case, though, I have been warned that I am unlikely to have a Whipple procedure. Due to where my tumour is, at the head of the pancreas and surrounding a major artery, it is unlikely that it will be possible. The fact that the pancreas is already in a difficult place to operate on, alongside the fact that the tumour is in an awkward position on my awkward pancreas, means it is near impossible to operate on in a conventional way (conventional being the Whipple procedure, which is anything but conventional; it essentially involves removing various organs from the digestive tract before attaching it back together in a new order). Further to this, today I learned that having a tumour in the head of the pancreas is more damaging than having one in the tail as the head is where the main pancreatic activity is; it is the part of the organ which produces insulin, as well as the part which creates the enzymes that break down fats. A tumour in the head of the pancreas may also physically block the enzymes from getting into the stomach.

I’ve tried to explain it all a little better in the following paragraph, which I wrote over a long period of time and with great effort. I ensured I did plenty of research before writing it, and am confident that it clearly demonstrates the functions of the pancreas, and why having a tumour in the head of the pancreas is so damaging to your body. Not only does it clearly demonstrate these things, but it does so in a way that the layman can understand, like you and I. Whether the mainstream medical journals choose to praise me for achieving what they never could, is up to them; if it is too edgy then so be it, not everyone can take my raw and direct approach.

The reason that the Whipple procedure is so difficult is because your stupid pancreas is behind your stupid stomach, so it is already hard to operate on in stupid surgery. The pancreas produces stupid insulin to control your stupid blood-sugar levels in your stupid body, but it also creates stupid enzymes which help break down stupid fats in your stupid stomach. When you have a stupid tumour in the stupid head of the stupid pancreas, it disrupts all of this stupid activity because the stupid head of the stupid pancreas is the part which is stupidly responsible for producing and releasing these stupid enzymes and stupid insulin. That means that if you have a stupid tumour in the stupid head of your stupid pancreas then your stupid body starts struggling to supply the stupid enzymes to the stupid stomach which help it in breaking down the stupid fats. That is why stupid Creon, a stupid tablet that you have to take a stupid amount of with meals, is so stupidly necessary when you have a stupid tumour in the head of your stupid pancreas. Further to all of this, the individual who stupidly allowed a stupid tumour to grow in the head of the stupid pancreas has an increased chance of developing stupid diabetes because of the stupid pancreas not producing enough stupid insulin anymore. Capiche? Good. Glad I got that off my chest. Probably some of my best writing, if I may be so bold.

Seeing as a Whipple procedure is so unlikely in my case, you may be wondering why they are going to be slicing my entire abdomen open and spending hours operating on me. This is where Irreversible Electroporation (IRE), also known as NanoKnife, comes into play. I’m not sure why it has two names, which seem to introduce it as two quite different things, at least linguistically. Irreversible Electroportation makes it sound technical and cutting edge. NanoKnife makes it sound like the surgeon requests the extra small knife for this part of the procedure, before grasping it with the thumb and finger and delicately shaving the tumour away. Although the second is far more entertaining to imagine, I believe that the first far better describes the technique. A small electric shock is applied to the tumour, attempting to kill the cells. Its success in treating pancreatic cancer is little documented and not really understood, so we are in “uncharted waters,” to quote the surgeon in my first meeting with him. They do not commonly agree to do a major operation, only to use an experimental form of treatment with little documentation over whether it is likely to improve the situation or not. The treatment does seem to have good results with prostate cancer, though, so I really am positive that it is a good alternative if a Whipple cannot be done.

What I don’t like is the use of the word ‘Irreversible’. I can’t think of many medical contexts where you want to hear the word ‘irreversible’ used. Perhaps if there was a procedure called ‘Irreversible Cancer Killer’ which irreversibly killed all cancer cells in your body, I’d be on board. I haven’t heard of such a procedure, though. In this case, the word ‘irreversible’ just makes me think that I’ll be sat in a meeting in 5 months time, reviewing a new batch of scans of my pancreas. As the doctor explains to me that the electric shocks have irreversibly damaged my pancreas, I’ll sit with a confused look on my face. “I thought this was meant to help? Is there nothing you can do?” The doctor then smugly laughs and says to me, “I’m sorry Daniel, do you understand the definition of irreversible? The clue is really in the name.” I absolutely do not believe any of my oncologists would speak to me like this, but it is fun to have a bad guy in a story. I hope none of them read this blog… Who am I kidding, they’re far too busy to read this nonsense.

Anyway, this all relates to diet because a Whipple procedure takes a lot longer to recover from. The dietician told me that they make three new ‘joins’ in your digestive tract when doing a Whipple. I’m pretty sure I cringed when I heard her say the word ‘joins’ in relation to my digestive tract; it makes me view my abdomen as a kitchen sink, and the surgeon as a plumber rearranging the pipes. There’s something disturbing about it. I don’t like it. Those new joins make digesting food difficult for a long time, as the area is tender.

The nurse told me that a Whipple procedure would probably take 2 – 3 months recovery to even be eating normally again. NanoKnife would be considerably less than this. When I asked the anaesthetist yesterday how long I’d have to wait to find out which procedure they had done after waking up, she told me to check the time on my phone once I’m awake and sitting up. “If it’s 18:00 or later – they’ve done a Whipple.” I guess I’ll be waking up and grabbing my phone straight away, like the modern-day millennial I am. The nurses will probably think I’m Twitter-mad or something.

I know that in reality, it does not matter, though. The surgeons don’t know what they are doing yet; it is all about what they see when they open me up and what is deemed possible. Either way, I’ll wake up and will be forced to deal with the consequences. I need to let go of wanting to understand both scenarios and how awful they may be for me in terms of recovery. What I need to focus on is what the dietician told me to do before the surgery – do more strength training in the gym, keep up the running, and EAT EAT EAT! Alongside this, I need to keep good dental hygiene; this is to try and prevent myself from getting any chest infections or bugs during or after treatment. Apparently, most of these bugs are transmitted from your mouth, so the better your oral health, the less likely you are to develop any of these issues.

I also learned a little more about Creon use. The nurse seemed to mostly praise my use of Creon but did tell me a few useful things. Mainly that you should only be taking Creon when there is food in your stomach; taking any before or after is pointless. You should take your first one just after starting to eat, and your last one just before the last few mouthfuls. Alongside this, if you suffer from acid reflux, you need to have an anti-acid prescribed to you to ensure that the capsules travel through your body without the enzymes being damaged. I suffer from acid reflux badly, so this is a key problem for me. I have Omeprazole prescribed to help with this issue, but my GP in Alsager, my home town, keep saying that it is not on a repeat prescription, despite being on my medication list whenever I pick up prescriptions from there… very unusual. The dietician said she would send them a letter and resolve this issue. Another reason to see the dietician as early as possible – they get shit done (or mine did, at least)!

So, another day and another meeting at MRI. Today’s was good. I left it feeling positive. It is good to learn new things about managing your cancer better and I felt empowered by the whole process. Any directorate to eat everything you want is good in my book – I’m going to go baking mad and not feel any guilt for any of it, not that I felt that much guilt anyway. I just didn’t eat too much of it myself before. That’s about to change…

Lastly, as I finished writing this post, I saw a headline on my phone stating that Dame Deborah James has died at the age of 40. She was truly defiant in the face of her diagnosis, raising millions of pounds for charity and raising awareness, with courage, wit and openness. The image of a beautiful woman fighting a deadly cancer is powerful in itself, disbanding the common idea that cancer sufferers are older, weaker and frailer than the rest of society. It surprises people to learn that I have stage 3 pancreatic cancer, and although I am charmed by these remarks, they demonstrate the fact that many expect your cancer to be visible; they expect you to be worn down by it. Of course, there comes a point where the cancer will get the better of you if you cannot get rid of it, and you will change physically, as anyone does when they near their end. Life is not infinite, though. We fight to stay with our families, friends and loved ones, but we grow ever more aware that the fight may be in vain. Deborah chose to use her position for good, channelling tremendous energy into that fight, as well as the one against her cancer. I’m sure both fed into the other, making her an even stronger person. She’s an inspiration to me as I write these blog posts, and knowing that she was originally a cancer blogger makes her even more inspiring.

Rest in peace, Deborah. Your suffering is over now; I hope that your loved ones take some comfort in that fact. I know I’d want mine to.

Pre-Operation Probe

The Road to Recovery

Baking Bread – The New Morning Routine

The past few days have flown by and I’ve barely been cognisant of how long it has been since I last posted. This morning I checked and saw that five days had passed. Readers may believe that I’ve been in a paralysed state, terrified of surgery and cowering from the outside world, too stressed to interact with it. Thankfully, the opposite is true. I’ve been overindulging in plans, getting out of the house and keeping myself busy. I’ve seen a lot of friends and family and had a lovely few days. Particularly inspiring was my friend Flo’s speech at a University of Bath Alumni event. Last year, she rowed across the Atlantic with two of her friends, becoming the youngest female team to ever complete the 60-day journey. Her speech was centred around the theme of ‘opportunities’ and taking them. It was extremely inspiring and even included some embarrassing pictures of us from university on the screen. Larissa and I were giggling as they flashed up behind Flo whilst she spoke. But today is Monday, and Monday demands a return to normality; a banging drum that reminds you of the seven-day cycle to which you must adhere. When the weekend’s potential is spent, you are forced to readdress whatever is sitting on your to-do list.

Larrisa, Me, Flo at the Bath Event

I woke up with a few things on my to-do list today. Bake bread, fill in the online questionnaire for my pre-op appointment at Manchester Royal Infirmary (MRI), attend the appointment at MRI and, of course, finally write another damn blog post. It isn’t necessarily in that order of importance, but it is in the order of service. As I write this, at 11:50am, I have left the bread to prove for the final time before going into the oven, have baked some ginger biscuits and have filled in the online questionnaire for the hospital appointment. No doubt I’ll have to come back to this post and continue writing several times over the day, making editing it a labyrinth of differing tenses, incorrect assumptions and interesting events which demand inclusion after the fact. That’s fine, though. I guess the game for the readers is to spot these things now – a sort of ‘Where’s Wally? Ebb and Flow’ edition, where you’re on the lookout for grammatical and contextual inconsistencies as opposed to a man in a red and white striped top.

My family and friends have come together well in response to the news of the surgery. Mostly. There has been the odd moment where I sense someone is more upset than they’re letting on, or where I feel a little let-down at the lack of support, but these things are quite normal I find. Besides, when I feel let down, I recognise that more as me demanding more from someone than they are perhaps able or willing to give at that time. That helps me move past those thoughts. It is much better to make a beast of yourself and never rely on anyone else for any support, ever. Of course, I am being facetious, but you do have to become thick-skinned when dealing with cancer. No matter how supportive your network is, they can’t be there all of the time. You still find yourself laying in bed at 5am, unable to sleep and frustrated with the world. Those are the moments where you feel most alone and your ability to cope is really tested. Mine is standing up to scrutiny so far. The only time I have cried since finding out about the surgery was when I was trying to comfort my brother Greg on the phone, only to spiral off on a tangent and spit out sentence after sentence of doom-speak. Perhaps I needed that; I’ve felt very positive ever since. I am frequently waking up at 5:00, which is annoying.

The appointment at the hospital was at 14:30. I wasn’t really sure what a pre-op appointment would consist of. There are a few things that I could have guessed would occur – at least one blood test (they never let you out of the hospital without taking some of that red gold from your veins when you have cancer), a long questionnaire and at least one thing that I didn’t expect but that is very uncomfortable. Guess what, it offered up all three. My favourite kind of hospital day.

First up was the questionnaire. Considering my surgery is a major one that may last from 9:00 until 18:00 in the evening, I don’t mind answering a long list of questions. It is probably required more than ever. I’m hopeful that I’ll be under every type of drug available to man which will make the experience more pleasant for me; if I have to answer 5000 questions to make that possible, then so be it. I’ll talk to you about the inner workings of every bowel movement if it grants me the top tier of pain relief. Hell, I’ll let you observe me on the toilet and then study the result with you if it’ll convince you that I can withstand 5kgs of ketamine and a couple of barrels of general anaesthetic.

It was during this questionnaire that the uncomfortable moment revealed itself. “Have you been admitted to hospital in the last twelve months?” The nurse asked me. I responded by telling her that I had been admitted to King’s College after my diagnosis, as I needed a stent installed in my bile duct. That is where she warned me that things were about to get a bit ‘unusual’.

She went to a medical trolley which sat in the corner of the room and opened up a drawer. Out of that drawer, she pulled a sealed plastic bag. Inside was a double-pronged cotton bud with a very long plastic stick to hold. There was then a long plastic tube which the cotton bud could be screwed into. “You need to insert this into your anus until there are faeces on the end of it. It’s to detect a bug that you may have picked up whilst in hospital.” I broke out laughing almost immediately. It was funny as I had just done a swab on my inner thigh and said to her “it’s quite a weird sensation rubbing a cotton bud there – you don’t often feel things in the crease between your leg and your thigh,” to which she had replied, “it may be getting weirder after this next question!” She was right – it was weirder than rubbing your thigh.

I’m not going into too much more detail about what happened afterwards, but you can see why I had bowels on my mind during that previous paragraph. What I will say is this, pushing something into your bum for the first time is a little disconcerting. A part of me wanted to go back and ask the nurse to help me, but I thought that might be a little awkward. She didn’t extend any offers when she told me the task at hand. I’m assuming that she may have done that when she was young and naive, only learning through experience that by offering you do in fact have to assist if they call your bluff. I would have been calling her bluff. I thought about asking my fiancee Anna to come and have a go. That has the potential to kill the relationship, though. “Hey honey, can you push this far enough into my anus so that a little bit of faeces is visible on the end?” There isn’t really a way to ask that question without it killing a little bit of your relationship at least. My mum was with her in the waiting room too – it might be a little embarrassing to broach the question with her there. I’m now writing it on a blog that many of my own family and my fiancee’s family read so I guess I’m not actually that embarrassed about it all. It’s knowledge sharing, Dan; someone else might be reading this in anticipation of their own pre-op. Just keep telling yourself that. That makes it way less weird that you’re writing this on the internet to be consumed by anyone, including your own colleagues.

The rest of the survey was pretty dry. The nurse had a nice and dry English humour about her. That makes it better. She sent me back to the waiting room and told me that I’d shortly be called to do bloods and an ECG. I was also told that once my bloods are done, I will have an opportunity to meet with an anaesthetist to talk about that side of the procedure in more detail. After returning to the waiting room for about five minutes, I was called into the bloods office.

Bloods were pretty normal. Me sitting there clenching my arm, pointing out that I have a scar on my vein from the number of times I’ve been stabbed in it. The nurse also had a dry sense of humour – perhaps working in a highly stressful environment, full of intense emotion and anxiety leads one to blunt their emotions and actively seek humour, wherever they may extract it from a situation? Just a thought. The true extent of this humour didn’t come out until the ECG. “Take your top off then, let’s have a look at you,” she said. I warned her that I had a lot of tattoos; she told me that she was still married. As I lay on the bed with her attaching stickers all over my body, I started to discuss where the incision may be on my stomach. I have a tattoo of a man dangling from a star in the middle of my abdomen, starting just below my chest and finishing just above my belly button. I told the nurse that I’d been wondering where the incision would interrupt the tattoo – whether it would mercilessly kill the man directly, or whether it would cut off the rope which we assume is sparing his life. She told me she wasn’t sure. I told her that it probably didn’t matter either way, as he’d be dead whether it was him or the rope that was cut. I think I’d reached the boundary of her humour with a patient – she probably thought I was sympathising with the tattoo a little too much for it to not be a projection of what I assume would happen to me during surgery. I really did just think it was a funny concept; it’s one of my favourite tattoos and it’s being ruined – I have to find the humour in it somehow.

The Tattoo on My Abdomen

Back to the waiting room in anticipation of the meeting with the anaesthetist. Anna pointed out that they are some of the smartest people in the medical profession as they constantly have to keep calculations in their heads; I still question this. If an accountant does not have to do any adding or taking away without a calculator, why would an anaesthetist have to figure a lot of important information out in their head? I wasn’t buying that. I’m sure they are extremely intelligent people, though. What I really want them to be is incredibly liberal. That is far more advantageous for me. Drugs, drugs, drugs. I want them to feed me so many drugs that I wake up in 2031 when they have finally found the cure for cancer and are administering it directly into my brain, toe or elbow; wherever they have to stick the damn thing to get rid of it.

Another five minutes or so and we were called in. I have to give it to Anna – this woman did have an aura of intelligence about her. What she was saying, however, was less impressive. I sat there as she described how I’d have a drain in my body, how I’ll likely have a line in my neck, and how I might need an epidural. I’m not sure what my face looked like as she was speaking, but I’m pretty sure there was a blatant look of concern slowly forming in my expression. There were so many words that I did not want to be hearing in relation to my body. Even the whole “if we need to give you a blood transfusion, are you ok with that?” thing is a little bit much for me – I immediately just imagine bags of blood and want to throw up. Maybe all the blood that I’ve been giving to the hospital will benefit me in the end, when they give me a load of it back to try to save my life after an operation… hopefully that won’t be necessary, though. I know that they don’t really keep your blood after blood tests by the way, but it’s fun to imagine the staff constantly adding it to a large oil carton with a ‘Dan Godley’ label on the side.

I left the conversation with the anaesthetist feeling more queasy and anxious than I’ve felt in a while. It was a healthy dose of reality – that this is really happening, that it is really complex and that it is actually happening soon. 9:00 until 18:00 – that’s more than the average work day. I don’t even wake up feeling well-rested afterwards. The anaesthetist warned me that I’d be very tired for a week or so. That was probably underselling what the worst of recovery is. I haven’t heard many who have come out of major surgery only complaining of how tired they are, but I guess I’ll be finding that out the hard way.

And that was that – the pre-op was done. Assuming that I don’t fail any blood tests or get told that I have one of these bugs from my previous hospital visits, I should be good. Tomorrow I’m back at MRI for a meeting with the dietician team. Hopefully, they won’t require me to put anything in my anus, but I won’t assume too much. You can never be sure what might happen with these appointments; once upon a time, I went to A&E expecting to be home at an annoyingly late time but with my abdominal pain sorted – that meeting spiralled into 5 weeks of uncertainty before receiving a cancer diagnosis. You never know what life will throw at you, but you start to get an idea when you still find yourself frequenting hospitals eight months later… sometimes you get told you have cancer, sometimes you stick a swab into your anus, and sometimes you probably do both. At least those things were eight months apart for me.

Surgery Date

The Road to Recovery

You’ll have to excuse the constant posting about surgery, but it is a bit of a hot topic at the minute. The headline is that I have a surgery date – Friday, July 8th. I need to get to the hospital nice and early – for 7:15am that morning. Upon hearing the time, as the scheduler spoke to me on the phone, I briefly thought to myself, “I’m going to be shattered,” but then I realised that I am going to the hospital to be put asleep/knocked out for approximately ten hours during surgery, followed by days in intensive care recovering from whatever they manage to do to me to improve my cancer. I’m pretty sure I’ll find a way to not worry about how tired I may be after my 5:30am wakeup on that first day. That was a thought that certainly didn’t age well in the five seconds it existed in my head; I travelled from an innocent thought about being tired, to tyrannical thoughts about surgeons playing Operation on my real-life body. Come to think of it, the Whipple procedure may have been thought up as a surgeon was playing the board game Operation considering the aim of the game is to remove all of the organs out of a body; that doesn’t sound too far away from what the Whipple procedure aims to do to your digestive tract.

The surgeon told us in our first meeting with him that the best-case scenario will require about ten days in the hospital. The worst-case scenario that he has experienced with someone he has personally operated on was two months in hospital, where there were many complications. Luckily, he has never had anyone die on him, but he did say that a colleague in his team has. I think that was a veiled dig at his colleague; these surgeons are a competitive lot, even in the most serious of circumstances. I left the hospital thanking the universe that it was him performing the operation and not his colleague, even though I’m sure his colleague is a very skilled and diligent individual. I just don’t want to chance it, really. Although, given that it is such a long procedure, perhaps they work it by tagging in different members of the team like a wrestling tag match. Damnit. Don’t think of it, Dan. It won’t matter to you no matter what happens, you’ll be out like a light.

Specific complications that the surgeon called out included the pancreas leaking pancreatic fluid, the patient needing blood transfusions and I must have blocked out the rest of the list because I can’t remember any more examples. Leaking pancreatic fluid sounds pretty gross, I know that much. I remember him telling me that Nano-knife works by applying a small shot of electricity. The shock is supposed to be small enough so as not to produce too much additional heat, but I think he said that there is a risk that the heat could damage my organs. Maybe I’m remembering that wrong, I’m not sure. The meeting is a little hazy now, so trying to piece together the specific things that were said, and why they were said, is difficult. He definitely spoke about how the Nano-knife technique produces a small amount of heat and spoke about why they wanted to minimise this, but I think that I was high on adrenaline at this point and simply nodding my head and smiling, in a picture probably reminiscent of Christian Bale in American Psycho. For some reason, I always find myself being more upbeat in these meetings; I’ve probably creeped out every oncologist, doctor and surgeon that I’ve met who has been involved in the process. During my diagnosis, I actually started laughing when the doctor said “it’s bad news I’m afraid.” I couldn’t help but feel like I was in a drama on TV and couldn’t believe the news was actually being delivered like this. I was waiting for the Eastenders theme tune to start playing, but it didn’t.

There are a few questions that the surgery has raised, but the most important one is this: is five weeks enough time to recover and go on my stag do? We’re assuming so because otherwise a lot of plans have to be changed. What plans specifically, I’m not sure, as I wasn’t invited to the sleepover where they all drew up the sinister blueprints for the weekend. Luckily, I have literally centimetres of cancer in my pancreas (2.1cm to be exact), so they aren’t allowed to physically or emotionally traumatise me too much. That is how it works, right? Surely I’m not expected to join in with the Frosty Jacks boat races or anything. If Frosty Jacks boat races were not on the agenda already, I’m certain it will be after my best man Luke reads that sentence. He’ll kick himself for not putting it in the schedule already.

For those of you who don’t live in the UK, or who lived a much healthier teenage life than me and my friends, Frosty Jacks is a cheap cider which has an alcohol content of 7.5%. When we were younger, you could buy a 3-litre bottle of it for about £3.50, which is absolutely crazy. It has something like 22.5 units in a bottle and we drank them quite religiously from the age of 16 to about 18. If I tried to drink it now, it may actually kill me, both because it is almost certainly 99% chemicals, but also because the amount of alcohol in it could last me six months with my current drinking habits, or lack of. The thought of actually drinking a 3-litre bottle of Frosty Jacks over the course of six months is so sad, come to think of it… And for those of you who don’t know what a boat race is, it is where you split your group into two teams who compete against each other. The two teams face each other on either side of a table. Starting from the same side, both individuals start to down their drink. When they finish, the person next to them can start drinking. That means that everyone focuses on the one member of their team who is currently drinking, making it quite a high-pressure situation, especially when you’ve already had a few drinks and are getting competitive. The winning team is the one that finishes their drinks first. A truly remarkable game to be discussing in a cancer blog, I’m sure you’ll agree. I haven’t played it in years and have no desire to, but we have to keep the blog content fresh somehow – it can’t all be ‘cancer this’ and ‘cancer that’!

One thing that my best man has shared with me is that he has started baking bread over the weekend. That got me riled up, as I’ve been meaning to start baking bread for a while. So yesterday, I baked my first wholemeal loaf. It actually went pretty well. Today I did it again to test whether it was a fluke. Another success. It’s actually quite easy and makes eating it far more rewarding. Tomorrow, I’m going to try and bake a wholemeal spelt loaf. I know what you’re thinking, “that’s got an entire additional word in the name!” It’s a crazy thing to dare to do, but I’m going to do it. Replacing the wholemeal flour with the wholemeal spelt flour might just be the downfall of my entire bread baking career. If it goes well, though, it’ll mean that I have two types of wholemeal loaf to make in future. High risk, high reward!

Half way through making some banana bread this afternoon, I received a call from Macmillan at Manchester Royal Infirmary. After my meeting with the surgeon last week at the hospital, I had spoken to the nurse about how I was feeling about things. I mentioned the financial concerns I had, which have been ever-present for months now ever since my employer made it impossible for me to return to work, yet only paid me a month’s full salary. Very nice of them. I truly believe that their HR department could receive ‘Worst HR Department in the UK’, which would be nice for them; I’m sure it is the only way they’d ever win an award.

Anyway, bitterness aside, the nurse had told me that she will get one of the Macmillan representatives at the hospital to call me and chat to me. Every time I see an ‘0161’ number calling me, my heart stops a little bit as it is the area code for Manchester, where the hospital is located. I’m always assuming it’ll be someone telling me some new development about my cancer. It was a relief to hear that it was Macmillan. The representative I spoke to was incredibly helpful. She spoke to me about all of the things that concerned me, offered to speak to my mum to further support her and said that she would get the financial advice team to call me after I have been discharged from the hospital, after the operation.

There was something in particular that she said which has really stuck with me and has given me such a lovely perspective. She stated that surgeons won’t decide to do something unless they see value in it, and that they believe that the pros will likely outweigh the cons of doing it. After all, it isn’t only my life at risk, but their own reputation (and pride too, probably). These decisions are highly calculated and scrutinised by an entire team of extremely skilled individuals. Not only that, but this is an expensive procedure to perform, requiring a complex surgery with a lot of equipment, and a long period in hospital afterwards for aftercare. Going ahead with it must mean that they perceive it worthy of that cost, which could be used elsewhere, for another patient.

Although I had thought of it in many different ways to help me process the news, I really hadn’t considered this one. It made me reconsider so much of the conversation that the surgeon had with me. He is always going to focus on the risks, concerns and potential issues – all of this information is incredibly important. If a patient walks out of that office not understanding the full extent of the consequences of agreeing to such an operation, they could end up agreeing to something that they, in fact, do not consent to at all. It is, therefore, the intent of the surgeon to ensure that the severity of the situation is communicated in the clearest of terms – that there is little evidence of how successful Nano-knife may be, that the operation is a major surgery and carries a lot of risk, and that my general diagnosis is a damning one, especially statistically. He also pointed out that most people in my position wouldn’t get an operation at all, but I am getting one, so they must see something different in the situation. Whether it is my age, health or diagnosis that they see as ‘different’, or a combination of those things, I don’t know. I don’t care, of course. I’m grateful that they made the decision that they did and I need to remind myself of that when I am fearful or anxious about the surgery. Surgery is what I wanted, and it was not guaranteed at all. It does create a strange dichotomy between the excitement of achieving that goal, yet knowing that it means I will be having a big operation, but that’s ok. Life is full of situations which leave us emotionally confused, being pulled in multiple directions at the same time. We are complex beings; we cannot expect ourselves to always feel certain we understand how we feel about a situation, especially where it is complex.

There is one last thing which I saw today that I thought was worth talking about. As my Twitter account is for the blog, and the primary things I follow on there are cancer-related accounts, I get a lot of cancer posts in my feed. Today on my feed, I saw the below post by the actress Mindy Kaling, who was put on my radar by the series The US Office, but has had her own show since, and has been in various big-budget films.

I thought that I was glad she was posting about it to her 11.5M followers. It has to be good for pancreatic cancer, I’d think. Spreading awareness on such a big platform is a great thing. Being nosy, I went to the comments. That’s where I found an …interesting… take. The following comment had been posted:

“What you’re doing is great but children with multiple malignant brain tumors with so much treatment that they suffer a stroke and end up paralyzed and still tumors in the brain that cannot be removed to cured.

I’m honestly not sure what the central point even is here, it is so confusing how it is written. It seems to continue adding new ideas as the sentence drags on. What I do know is this – it may have been written with the best of intentions, but certainly doesn’t come across well to me at all. Why do people find a way to apply some form of elitism to every topic? What benefit is there to treating cancer like it is a new edition of Top Trumps? Mindy posting that she supports pancreatic cancer gaining funding from the government does not mean that she does not support more funding going towards children with cancer, or any form of brain cancer research. Why this person thought that this was a helpful or mindful thing to say, I do not know. The two things are not mutually exclusive. Perhaps they actually know more than I do, and the additional money would be allocated from brain tumour research, in which case it may make more sense. They have not said this, though. Sometimes I really wonder what people’s intent is – I’m sure this person came in with the best of intentions, but what help does it really provide? Is it really an appropriate place to raise such an argument?
So, I want to make this clear – when I say that I believe pancreatic cancer needs more funding, given it has the top mortality rate of any common cancer, it does not mean that I want money diverted away from any other cancers necessarily, or that I don’t value the struggle that other cancers bring. Having said that, pancreatic cancer seems to be low down on the priority list, due to an average diagnosis age of 72 and difficulty diagnosing it early enough to do anything about it (in most cases). Of course, the second issue is also probably that way due to a lack of funding, which I believe to be because it has been designated as an ‘old person’ cancer, which relates it back to point one. It is a vicious circle.

No one will say the words ‘it’s fine if old people die’ publically, but that is essentially what is happening in terms of pancreatic cancer, and I do believe that it hurts the attractiveness of the cancer in terms of research funding. I understand that having such an old average age of diagnosis is a genuine consideration when dealing with cancer and research grants, as it is much harder to save people who fall ill at this age, but it seems to be becoming unjustifiable. I regularly see pancreatic cancer charities sharing posts stating that the survival rate has not changed in over 50 years – how is that acceptable with how quickly our technology seems to move? I’m sure that the other common cancers have experienced at least some improvements in this period, if not significant ones.

The overall lesson is simple, though. Think about what you write online. It may feel like it only matters to you, as you sit alone on your phone and decide to voice your opinion on something, but by writing it, you are throwing it out into the online ether for anyone and everyone to consume at their will. I’m not sure if this comment was trying to imply that so long as children get brain tumours, no other cancer is worthy of consideration, but if it is, that isn’t fair. It isn’t fair to make people who care about pancreatic cancer feel bad for doing so, and it isn’t fair to take away from the message of Mindy’s post. No one would disagree that the things being described by them are horrific, and if that has happened to someone this person knows then I feel even more sympathy, but it is not the only consideration at play. It is also not the place to make such an argument. Would they be happier if Mindy took the post down, choosing to only post about brain tumours instead? Will she see your comment and repent, or simply ignore you? I believe the latter is more likely.

Rant over (until the next one). One day closer to surgery!