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.

I Hate the Sea and Everything In It

The Road to Recovery

Matt, Lucy Dog and Me at The Flat in London

It’s been a few days since I got the scan results. I wish I could write that my inner stoic has surfaced and that I’m taking the results on the chin. In a way, I think I am dealing with it fairly well, but it is still difficult to face. Although I did not get any bad news per se, the vibe of the meeting just left me feeling deflated. It worried me more that I was asking questions but not really getting any answers. Responses such as “I can’t answer that I’m afraid” and “It isn’t clear at this stage” aren’t necessarily a bad thing – I understand that giving an answer when you aren’t confident it is correct, or where it isn’t your responsibility to know, is not a better thing to do. A little bit of optimism or encouragement goes a long way in these meetings, though. I do not feel like I got a lot of that in the last one. Uttering “so, I don’t have any bad news for you today,” may constitute optimism in some people’s books, but in mine it constitutes the bare minimum amount of optimism you can provide as a foundation to a meeting. Maybe Dandard’s standards are just too high and I need to ground them a bit.

The event that originally charmed me about The Christie happened during the first meeting with my specialist. Up to that point, I had faced nothing but negative news, pessimistic outlooks and concerned faces. Having a medical professional utter things such as “we’ll get you back to running marathons” and talking about how I’m young, so there are many options for me, made an incredible amount of difference in my spirit. That is exactly what the oncologist did in my first meeting at The Christie. I practically skipped out of the meeting and felt so relieved that someone had painted a different picture of my diagnosis. All of a sudden, it felt like the possibility of a meaningful future still existed. That wasn’t something I’d managed to entertain until that point, since being diagnosed. Things got better from there; it was easier to feel like myself. Yet nothing had been promised to me. I wasn’t going to bang on the oncologist’s door and demand to know why he had told me that I’d be running marathons again if my tumour ended up being inoperable, or if there was a recurrence after surgery… or even if I was cured, but didn’t feel like running marathons anymore. I took it for what it was – a vote of confidence. A communication that things can return to normal, that there is a way to be cured from this disease and return to my normal life. It felt amazing, but it seems to be uncommon in the world of oncology to offer up such pleasantries.

It seems pessimistic to even need such reassurance, as if I should know that there is a cure and that it is possible in my case. The literature around pancreatic cancer does not leave you feeling particularly confident that there is such a cure, though. Nearly all success stories seem to be where the tumour could be removed quickly, and where the cancer was identified at the earliest possible stage. My cancer was diagnosed early, relative to the average diagnosis, but it wasn’t early enough to allow for surgery. Pancreatic cancer is often diagnosed at a late stage as it only starts showing symptoms later on… or at least, that is when the symptoms get significant enough that pancreatic cancer is considered, as opposed to something much more minor. In my case, I was told that I was suffering from a mild form of constipation. Turns out that diagnosis was incorrect, unfortunately for me.

Despite being diagnosed relatively early, my tumour is still locally advanced and has other complications, such as it’s m unfortunate appetite for arteries, making it difficult to remove. There’s also the unknown ‘mass’ which is apparently bewildering the oncology team; previously known as a ‘cyst’, but becoming more mysterious over time, and even getting smaller in the last progress scan – a property of cancerous cells. The ‘cyst’ label seems to be a misnomer, but I’m not a huge fan of the nondescript ‘mass’ label that has now been assigned to it. Those facts are playing on my mind as I wait for the surgeon’s verdict. If my meeting had been more encouraging, either by having more positive results or having a more hopeful delivery of the results, I may be dealing with the anticipation a little better.

That isn’t to say I am blaming the oncologist either. Through a workplace help scheme, I got 6 counselling sessions paid for which I decided to start using a few months ago. My final one was today. It actually should have been a few weeks ago, but my counsellor suggested making the sessions 30 minutes instead of an hour so we’d cover a larger period. It was extremely kind of her to do so and she was under no obligation to.

Speaking to her earlier, we discussed how the oncologist’s job is actually quite prescriptive. It is a matter of enforcing processes, evaluating results and responding to those results in a mostly regimented way. For example, you are identified as needing x type of chemotherapy. Within the chemotherapy cycle, there are checks a, b and c which are used to determine how well it is going. If something goes wrong, there are appropriate ways of identifying the issue, and then responding to it. For example, if your platlets are identified as being too low for treatment, you will delay the treatment by another week and check the bloods again, to see if the levels have recovered. Everything is constrained, and the approach is standardised insomuch as it can be. Some things may fall out of the standardised approach, such as where the individual gets an infection and the team need to find that infection, assess how dangerous it is and then help the individual fight it. For the most part, though, an established process is followed. The surgeons work is where a more creative approach must be adopted. It is where the individual specifics of the case must be properly dealt with in a direct manner.

The surgeons also offer up the next major piece of progress, allowing the treatment to progress further. As far as I understand, the success of the surgery itself will determine what comes next in terms of a treatment plan. Sometimes the surgeon will go in and find a different situation to what they expect in terms of the tumour. For example, they may go in to find that many lymph nodes have also been impacted, making the surgery more time-consuming and risky. The fact that I also have an unknown ‘mass’ to remove will undoubtedly make the surgery more complex. Perhaps that means that they are less likely to consider a full removal as an option for me, or perhaps it makes them more inclined to try if leaving the mass increases the perceived risk of me dying. I just don’t know, but neither did my oncologist. Or he wasn’t willing to vocalise his opinion on the matter. I’m sure he has an inkling what the answer is, but it wouldn’t be in his favour to offer up an opinion if there was a risk that the decision from the surgeons does not go in that direction. I’m sure it’s more than just a risk that such an event happens.

I keep thinking of it in terms of my work experience to try and offer myself some comfort as to why I could not get my questions answered. If I am on a project and a client is asking about the budgetary constraints which I am not aware of, I would not offer up an opinion on the matter as it is not my expertise. At very least, I would tell them that I did not know, but will speak to the appropriate team and get back to them. Either this or I would organise a meeting with the appropriate team so that they could discuss it. What the oncologist did is not too far from this, which comforts me somewhat.

They did not attempt to get a surgeon involved in the meeting, to offer an olive branch in the form of asking one of the surgeons to call me sooner to answer my questions, or to get some detail from the surgeons to offer up alongside the news that the case was being passed them. Perhaps there is a specific reason for none of these things happening. My guess is that the teams are considered completely separate functions, divided not only by discipline, but by the actual hospital they operate from too; my oncology team are part of The Christie, whereas the surgery team are based at Manchester Royal Infirmary. That means that the oncology team probably do not have any right to ask for their time. I get that, but it would be beneficial for the patients if the oncology team could try and coordinate such a thing. It may lessen the anxiety ridden month that follows the news that your case is being referred to the surgeons. The surgeons must have representation on the multi-disciplinary meeting after all, seeing as that is the meeting where it is agreed that it can be passed to their team in the first place.

But anyway, criticisms aside, the task is to now keep myself busy and not dwell on what may or may not happen. For a month I have no treatment, no meetings, no appointments. There is a comfort in that. I’m trying to embrace it, use the time to start doing some normal ‘life’ things. Anna and I drove to London to spend a few days back in our apartment. On Friday, I attended some work drinks for my manager who is moving on from the company I work for. She has been a great support throughout the last 8 months. It is sad to see her go, but it was nice to do something ‘normal’ again in attending her leaving drinks. I hadn’t seen anyone from work for around 8 months, since I was first in A&E with abdominal pain, on a random Monday evening. Everything changed so quickly; nothing that was previously considered ‘normal’ feels normal anymore.

I got a little carried away and had three pints. It was over the course of about 4 hours, but I ended up getting in late, eating even later, and going to bed even later than that. Not a lot of alcohol is required to get my anxiety going these days. I lay awake at 5am, after getting a few hours sleep, in the spare room of my flat in London (the master bedroom is being rented to a friend Matt as I couldn’t afford the mortgage whilst not working). I felt angry at myself. My mind paced yet further through the emotional landscape. Anger turned to worry. “Why am I drinking three pints when I’ve got a tumour? Could it worsen my condition to an “extent that the surgery could be unsuccessful? Worry turned to pure pessimism. “Who am I kidding, I’m not going to get the surgery.” It sucked.

I wish I could be easier on myself – the logical part of my brain knows that I don’t drink often, and three pints is far from a ‘session’ by normal standards. Anything that can make you feel bad under these circumstances, will. It feels like it is part and parcel in these uncertain periods. Nothing is good enough, everything is intimidating. Any cracks in your mindset start to break into holes and the vulnerabilities you harbour start to rise to the surface. Perhaps it is necessarily to feel it to allow you to then process it all properly.

Saturday was busy. I needed it to be. We met friends for brunch in the morning before walking Lucy around Clapham Common. There were sausage dogs everywhere, and Lucy had a great time playing with dogs her own size for once. Then we went to a friend’s birthday drinks in Tooting. By about 17:00 we were back at the flat, getting ready to host my brother in law, Keiran, and sister, Josie. It was Keiran’s 30th birthday. He seemed to like his presents from the family which was nice! I also made him some double chocolate chip cookies. He had about half of one but I wasn’t offended – he is currently trying to eat less ‘bad stuff’ and they definitely fall in that category. The other 30 are being eaten by anyone else who walks into the flat. I’ve been sending people home with multiple just to make sure they don’t go to waste (and that the responsibility to eat them isn’t all left to me).

Lucy’s First Time on the Tube

On Sunday, my brother was competing in a cycling event in London. A few of my family members, including my parents, all met up in central London to meet him afterwards and go for food. I think the previous few days had caught up with me. We sat outside waiting for him to finish, but I managed to get incredibly cold, despite wearing two coats, a long sleeve top and a t-shirt. I’m not sure what was going on really. Once he had finished, we went to a local pub for some food. I was falling asleep and wasn’t good company at all. Anna and I left early and made our way home. Lucy seemed tired too so I think she appreciated it – the previous day had been a lot for her too. That did mean she couldn’t beg for any more food, though, so perhaps she was a little bitter. After getting home and napping for a bit on the sofa, I managed to force myself to run 4 miles. That felt pretty good and helped me a lot mentally, even if it absolutely killed me physically.

Working in a Cafe with My Bezzie Dee and Lucy

So, the mental back and forth continues. At times I manage to embrace my inner stoic and feel like I’m at peace with what is going on. I am in many ways. I accept the negative statistics that get plastered on every pancreatic cancer website, I just refuse to accept that it is inevitable for me to become part of them. If I do, I’m ok with it, but I want to know if that is the case. Currently, I reside in a place of limbo. Getting out and staying active seems to help, though it tires me out and leaves me feeling exhausted. I’m finding keeping busy to be a double-edged sword. It is good, but also leaves me feeling like I am avoiding some unpleasant realities about the situation. Those negative thoughts only emerge from the shadows of my mind when I have pockets of time to myself; it makes me realise that I am probably struggling to accept it more than I allow even myself to believe.

Cleaning Lucy’s Teeth

Perhaps I am over-dramatising the importance of the next step. I’ve really convinced myself that it is either full removal, meaning I can still be cured, or nothing. Not nothing meaning that the surgeons won’t do anything, but nothing that could lead to me being cured. I’m sure it isn’t that straightforward, but the oncologist couldn’t give me any answers of substance when I put the questions to him. As opposed to accepting that he really may not know, I can’t fight the thought that he does know, but it isn’t down to him to break the news to me. I’m sure that I am being paranoid and just not recognising that my brain is moving into a new phase of contemplation, paranoia, but I never got any reassurance from him that allows me to easily shrug off those thoughts. I’m heading to Dorset on Wednesday anyway. Lets see if the sand on the beaches, sound of the ocean and salty breeze helps improve how I am feeling about it all. There’s only one problem with that – I hate the sea and everything in it. It is lovely to look at, though.

Results Day: The End of Chemotherapy Scan

The Road to Recovery

Covid Check Mid-Cooking

I woke up earlier than usual this morning. My eyes were reluctant to open, but my brain had made up its mind. Time to get up. I searched for my phone with one eye half-open; the other one hadn’t got the memo yet. Sunlight was peering through a gap in the curtains so I knew it wasn’t too early. 5:58. Ok, it was earlier than I thought.

Lucy the puppy was snoring and I could feel her body heat against my leg. She likes to sleep underneath the sheets, either in between my legs or between Anna and I. Sometimes we go to sleep with her in the bed, then wake up and she’s in her own bed on the floor, fast asleep. We used to wonder what we did to insult her during the night, but now we tell ourselves that she was probably too warm. I think it’s Anna’s snoring personally, but I do have a tendency to move a lot in my sleep so it might be that. Maybe I’m always dreaming of being a ninja, spin-kicking cancer in its ugly face. If that is the case, I haven’t remembered a second of the dreams. Maybe one day I’ll remember it all and experience it so lucidly that it feels like it is really happening. For a few hours, I’ll be content, beating up cancer with no regard for poor Lucy in between my legs. She’d experience each kick as a sudden jolt and eventually decide she is safer in her own bed. I’d try and fight the urge to wake up in the morning, reluctantly doing so in the end. “You were moving a lot in your dreams again,” Anna would say. I’d smirk to myself – “I was kicking cancer’s ass.”

The appointment with the oncology team wasn’t until 15:15. Before that, I had a bloods appointment scheduled for 14.15. That means that we didn’t need to leave the house until around 13:15. I knew I had time to kill, so I made a few plans in the morning to keep myself distracted. Those plans didn’t account for me waking up at 6:00am. They expected an easy-breezy wakeup time of 8:00, maybe even 9:00… make sure I’m well-rested for the big appointment – ready for any adrenaline hikes or dives that may kick in. 6:00am was unacceptable. I got up and went to the bathroom, then came back to find Lucy had gotten out of the bed and gone into her own. Proof – it was Anna’s fault all along, not my sleep-kicking. My only fault had been going to the bathroom…which meant I had moved…which may have disturbed her into going into her own bed…damn, maybe the evidence isn’t as conclusive as I thought. Luckily, I then slipped in and out of sleep until about 7:20. Better, but not perfect.

Once I got out of bed, I fumbled around the house a bit – cleaning this plate, playing with that dog. I then settled onto the sofa to watch a few YouTube videos. I can waste an impressive amount of time on YouTube. If it was a sport, I’d be in the regionals at least, maybe even pushing nationals. This session was short-lived, as my mum rudely interrupted me – “Want to do yoga, Dan?” she asked in her incredibly polite, caring and enthusiastic tone. “Yes, I’d love to,” I replied. How dare she suggest doing something useful with my time; I proceeded to get the yoga mat out, feeling deeply offended.

I then showered, before heading to ProCook with my good friend Jack. We’ve known each other since I first moved to Alsager when I was about 9 or 10. For all those years we spent playing on his farm, going to gigs together and attending football games, we had a first today. We’ve never been to a cooking store together. Who would have guessed it? He was after a set of knives, and I was flirting with the idea of purchasing a new baking tin. Adult life is one hell of a ride. Jack got his knives, and I left disappointed. They only had 23cm tins and I needed a 20cm one. I hoped this would be the only emotional turmoil I’d experience today, but there was a certain event lingering in the air that was threatening to topple it. I should probably just move on to the exciting bit, shouldn’t I?

We got to the hospital at around 14:00. Anna and my mum found a spot in the cafe, whilst I went and signed in at the desk. It was the receptionist that knew me well. For the first time ever, I approached and she simply said “Hey Daniel. Bloods and a meeting with your consultant today, correct? You’re all checked in.” Usually, you have to reel off your name, date of birth, home address and confirm that you are at the same GP surgery. I had to check if my mouth was open I was so shocked. So this is what it’s like to be a local at your local pub? You walk in to be greeted by a smile before someone tells you exactly what you were just about to order. I’ve never got to that level of familiarity before. It felt good. I’m going to start drinking in my local pub more.

I remember learning about pathetic fallacy in English when I was in school. The teacher used a scene from a film to help explain the concept. It was a sad scene, and as the actor sat there crying, the shot panned to a storm outside the window. She said that the weather was being used to emphasise the human emotion being displayed. This was called pathetic fallacy – the use of non-human elements to express or emphasise human emotions being portrayed in the scene. As we sat waiting for my name to pop up on the appointment screen, I couldn’t help but notice that it was torrentially raining outside. It had been sunny earlier in the day. I hoped this wasn’t a reflection of the results to come; if it was, there was a higher power mocking me today. That higher power was probably also responsible for giving me the cancer in the first place, so it was most definitely not the worst thing they’ve ever done to spite me. Perhaps it is the kind of humour I appreciate – the thought alone made me chuckle a little bit in a cynical kind of way.

The bloods appointment was approximately 30 minutes later than planned, which is reasonable. It went fine – we chatted about my tattoos and I complimented a few of hers. She told me that the one on her arm cost her £13 because her local tattoo shop does random tattoos for £13 on Friday the 13th. I remember my best friend Luke telling me about that once; it’s quite a funny concept. As if I needed more proof that blood nurses were vampires – this one brought up Friday the 13th out of nowhere. She’s mocking me… She managed not to lick her lips too obviously as she pulled the blood from my veins. I did notice her getting a little bit excited, though. She thought I hadn’t noticed, but I see everything with these monsters. I counted the canisters of my blood before walking out of the room – she had filled four. Is that a light snack or an evening meal? One day I’ll just ask, I’m sure they’re happy to chat about it once they know that the secret is out.

I made my way back to our spot in the cafe. More waiting, more rain, more anxiety. It was building fast now. My stomach was feeling tighter and I was getting restless. Finally – my name popped up. We made our way to consultant room 18. The nurse took my weight – 76.2kg – checked my blood pressure – a little high but not concerning given the context of the meeting – then she left Anna and me to the confines of the office. Nothing left to say, nowhere to hide. Approximately ten minutes later, the oncologist entered and introduced himself. Here we go…

In summary – the results were not bad. He stated this quite plainly as he began. “I don’t have any bad news for you today,” he said. I think those words may have been more reassuring in his head. In reality, that immediately said to me “he doesn’t have good news for you either, Dan. Prepare yourself,” and I was right to think that – he didn’t have any decisively good news to give us. In fact, I learned something that has worried me quite a lot, but I’ll come back to that.

The tumour has not shrunk any further since the halfway scan. My tumour markers in my blood are very low, which he emphasised was a good thing, but the main tumour seems to have stabilised at 2.1cm. That means I still have a net reduction in tumour size over the whole of my treatment, but it was disappointing news. The thing that I learned which worried me was in regards to what has previously been called the ‘cyst’. There had been mention of a cyst throughout the period when the doctors were trying to diagnose me. At first, it was the cyst causing all the problems, then the cyst had given me pancreatitis, and then they stated the cyst may have a soft tumour on it. The last time I heard about it was when I was finally diagnosed with pancreatic cancer at King’s hospital in London. I had asked the doctor who delivered the diagnosis if the cyst was in fact the tumour, but he had told me to forget about the cyst as it is no longer important. The oncologist today told me that they did not know what this “mass” was, but that it had reduced in size slightly. He said this could only be a good thing, but what concerned me was the whole ‘not knowing what this ‘mass’ actually was’ thing. Apparently, they know it is full of liquid, but they do not fully understand whether it is another tumour, whether it is a cyst with a bit of tumour attached to it or any other infinite amount of possibilities (the last part is my own interpretation). Hmm, concerning.

He told me that the case is being handed to the surgeons at Manchester Royal Infirmary and that if I do not hear from them within a month, to contact my surgeon’s secretary. That was it – that was the news. It felt extremely deflating, both because we did not get any news which felt overtly positive, but also because we had misunderstood the process again. We thought we would be getting more information on the next steps, but all we were told was that my team of surgeons will review the case and make a decision on what is next then contact me. That may be fully removing both the shady ‘mass’ and the tumour in surgery, which would be best, or it may be some lesser version of that, perhaps using the Nano-knife technique instead. I asked if anything but outright removal would be with a view to extend my life only and not cure, but he couldn’t answer as he was not sure. There were many things he couldn’t answer because he was not a surgeon. It makes sense, it just wasn’t what I expected. I thought The Christie managed my case, and the surgeons get involved in it when they are required. If that was the case, it would be reasonable to assume the oncologists would be able to answer more of the questions. That is not the case, though, so I understand that the oncologist’s role is now to hand over to the surgeons who will take the lead on the next part.

It was hard to not feel deflated. We were all upset as we left the hospital – knowing that we should feel positive overall but also feeling like we hadn’t quite got the final hammer blow that we wanted against the tumour. Now more waiting, and not knowing whether the next meeting will be when we find out the next steps, or if that meeting will be another ‘we need to discuss this further before making a decision’ type of meeting. The journey home was long and the traffic was terrible as it was rush hour. We didn’t speak a lot in the hour and a half it took.

As I got in the car, I’d just played whatever was last played on my Spotify. It was the ‘Moody’ mix playlist that Spotify makes automatically for me – perhaps not the best choice given the context. At one point, Bon Iver’s Holocene came on, which is a song I always find very emotional and moving anyway. I sat listening to him sing the words “And at once I knew, I was not magnificent,” and found it hard not to buckle under the weight of the situation. The song conjures up a lot of emotion in me at the best of times, but it felt extra hard to process during this moment. I’ve always found it strangely comforting too, though. The lyrics mean different things to me at different times. Today, it reminded me that I am another person trying to fight cancer, hoping I’ll have plenty more years to enjoy with my family, fiancee, friends and my dog. I want to see my siblings get married and have children, I want to buy a house in the countryside, push for a better job, support my friends when they need me, run 100 miles just so I can say that I could, and did. I want to see my parents grow old and be there for them as they do. None of it feels as tangible anymore; it feels like a far-fetched dream, as if I am asking to win the lottery. But I’m not magnificent and neither is my story – there are thousands of people attending appointments at The Christie every day who are suffering and hoping for the same things. There have also been tens, maybe hundreds of thousands who have hoped for the same things walking around that hospital’s corridors. A lot of them will have gotten their wish, but there are many who didn’t too.

So, as the chemotherapy fog gradually clears over the next few weeks, I walk into a new sort of fog. No longer under that cover of protection that chemotherapy offers, I’m forced to address new realities about the future. Whilst on chemotherapy, you have a specific battle to refer to. You have side effects, illnesses and symptoms to fight. You feel like you’re in a struggle, and although that struggle sucks, it is real and you know it is for the best. There’s a number you can call whenever you need help, where someone picks up quickly and reassures you, telling you where to go and what to do. I didn’t realise that at the end of chemotherapy, I’d actually not be under the care of The Christie anymore. Now, The Christie is writing a referral to Manchester Royal Infirmary, who will be the new custodians of my case for the foreseeable future. Of course, this is a good thing. It is the next step in the journey, and a full removal of the tumour is still on the cards. It just feels like a shock and I’m struggling to come to terms with it. New faces, new processes, new unknowns. I’ll adapt to it, I know I will. It just leaves you feeling stupid – like you should have realised that this was the case, but you didn’t because you didn’t listen closely enough or weren’t smart enough to comprehend it. I’m getting the same self-critical feeling about the lack of positive progress in the second half of the treatment cycle – was it my diet, the fact that I couldn’t exercise as much over the past 3 months, did I not sleep enough to allow the chemotherapy to be as effective? It all feels like my fault, and now I’m paying for it.

Whatever happens, I know that I have incredible support around me. In reality, the news today was always going to ultimately be that it is now being passed to the surgeons for review and they will decide the next steps. I know that, but it doesn’t make it feel any better. We didn’t walk away with a big headline – THE TUMOUR HAS SHRUNK. Instead, we walked away with more questions and fewer answers. But it is back to being patient and embracing the unknown. The chemotherapy did shrink the tumour overall and even managed to shrink the unknown ‘mass’ too. Just focus on that and hope that the surgeons decide they can get the bastards out. If they can’t, hope that whatever path we are embarking on is still one that leads to being cured, not just being made to be ‘more comfortable’. After all, Nigel’s story tells us that there are people who are magnificent, and I haven’t been fully excluded from that category yet. The sun came out as we waited in traffic on the way back from the hospital – that higher power really is mocking me today. Maybe it’s in jest, communicating that things are going to be fine. Let’s hope so.

Scan Day

The Road to Recovery

Saying Bye to Lucy Puppy This Morning

The day has come again…. attending the CT scan at the end of phase one of treatment. My last scan was at the half way point after 6 chemotherapy sessions, at the end of February, and produced good results. My tumour had shrunk from 3.2cm to 2.1cm, my tumour markers had come down considerably and the tissue around the artery was looking ‘healthier’. It was positive, but I struggled to allow the news to settle in as we left the consultant’s office. Anna cried immediately. I suspended any positive feelings I had. I’m not sure if it ever sank in fully. The results were then taken for review at the MDT meeting, a cross-functional meeting including those all-important surgeons, who still determined that I wasn’t surgery ready. It felt disappointing at the time. It wasn’t disappointing, though. I haven’t spoken to anyone who has had their chemotherapy interrupted because they were surgery ready. I’m sure it happens, but if the chemotherapy is working, why not continue? It wasn’t the reasoning that the oncologist gave as he relayed the decision to me at the time, but it is the bright-eyed-bushy-tailed interpretation that I decided to translate it into. That argument for continuing with the chemotherapy could be applied ad infinitum, I guess. Perhaps I shouldn’t suggest to the oncology team that I am happy to do chemotherapy forever. They may class it as a clinical trial and keep me in a cage to observe me. “He seems a bit distracted today and he hasn’t showered in 6 days. It’s quite disgusting,” they’d say. “I understand you, you know. I’m not a rat,” I’d respond, laying in my wheel like it is a hammock. They’d give me a funny look, write something in their report and walk off together in their white coats.

I find myself starting to write this post in the CT Scan unit (Department 11) of The Christie, drinking my dye drink every 15 minutes and acting like I own the place. It’s funny how much bravado you can bring on only the second time you visit a part of the hospital. I caught myself showing off that I knew the process. The nurse took me into a private room just after I arrived to do the introductory survey. Before she got to the questions, I said “I asked the district nurse to leave my line in yesterday, so you guys don’t have to use a new one.” What a hero I am. I’m sure she’ll be telling all of her friends about me for the rest of the week. “What a forward thinking-gentleman,” I imagine her saying to the team later, out of earshot of the rest of the room. Perhaps I should tell her about my blog, too. Although, I’m sure she doesn’t want to read about cancer to unwind from her job where she stares cancer in the face all day, every day. Maybe I’ll just tell her I’m a writer; that’s a cool thing to say, right? I can even say I’m published! Ok, I’m not going to say any of this, but it’s fun to pretend. She’s probably already forgotten about me in reality, and that’s the way it should be.

The nurse asks you what flavour dye you would like after you have completed the induction questionnaire. I go for blackcurrant, but the aniseed flavour easily cuts through it. Why are 95% of oral medical consumables flavoured like aniseed? (Please Note: statistics are not accurate and have been made up by the author). You are instructed to drink two cups of the dye straight away, then have one more every 15 minutes until you are called for your scan. It works out as approximately 900ml of liquid in one hour. I made a bit of a fool of myself as she handed me my bottle and cup. “It’s just one cup every 15 minutes, isn’t it?” I only phrased it as a question to hide my confidence; showing off was my prerogative. “Yes, but you need to drink 2 cups straight away too.” Damn, Daniel – you forgot about the initial 2 cups. She’s not going to read your blog now – any cancer clout you had, you just lost.

That wasn’t the end of my over-confident adventures in department 11. A woman asked a gentleman next to me in the waiting area if she needed to take off her jewellery. He responded saying he wasn’t sure but he thought so. I then cut in, confident as an ox and ready to dish out more knowledge on the lucky souls who happened to be in the waiting room with me that day. “Yes, you take it off and then leave it in a locker around the corner. They let you do it before you go in for your scan.” This wasn’t my first rodeo. She smiled and thanked me. “No problem, I responded.” BatDan strikes again. Just an ordinary man with an extraordinary appetite for helping others.

The nurse called me about half an hour later, once all of the dye had been consumed and I was ready for the scan itself. I followed her to the next waiting room, which is situated outside of the room where the CT scan takes place. A few minutes later, she calls me into a private room to flush the line that is attached to my port, and ensure it is working. The nurses flush the line using a syringe with a saline solution inside. They attach it to the end of the line, and then push it into your bloodstream to ensure that the device is working properly. Once they have confirmed it pushes in, they use another syringe to pull out some blood. It is unusual at first, but you get used to it. The saline solution is usually cold, and you can feel it as it makes its way into your body via the port in the chest. Watching them then pull blood out of you makes you feel awfully human. All of those lessons in science really told the truth – we’re just skin, bone and organs with blood circulating around us. Who knew? I was sure I was above it all. Maybe I’m not indestructible. I mention to the nurse that I need to take off my ring, watch and bracelet. “You’re only having your chest, abdomen and thigh scanned so you will be holding your hands above your head. You can leave all of your jewellery on,” she said, to my dismay. I seem to be full of bad advice today – I need to learn to keep my mouth shut.

Fifteen minutes later, I was called into the scan room. The reason that you need a line in during the CT scan is so an additional dye can be used during the scan. I’m not sure what the difference between the two are, I just do whatever the doctors tell me like a good student. The dye that is provided intravenously carries a warning – it feels warm around your genital area as it is pushed into your body. You are usually put through the CT scanner once without the intravenous dye, then the second time you receive a warning that they are issuing the dye and you may feel an ‘unusual sensation’. What they are referring to is the feeling that you may have wet yourself, but you haven’t. It is just a strange feeling of warmth around that area. It is quite disconcerting the first time – you get used to it by the fourth (I’m showing off again, aren’t I?) I’m unsure if it happens to both men and women, actually. The whole thing is very unusual, but over very quickly.

That was it. Another progress scan completed. I met my mum and Anna in the M&S cafe in the main part of the hospital. Our number 1 cheerleaders were waiting there with them – Nigel the Pancreatic Cancer Killer, his daughter Julie and his wife Mary. They all read the blogs (perhaps not Nigel, but I forgive him), send me lovely presents regularly and even come to the hospital to support me, like they did today. Not a bad group to have onside when you’re going through something as traumatic as this. We sat and chatted for an hour and a half before deciding to give the rest of the customers some peace and quiet, and go our separate ways. It was a nice way to round off the afternoon.

I’ve been feeling unusual today if I’m honest. It isn’t nerves, I don’t think. The scan itself is almost irrelevant – you have to show up, follow the instructions and then you’re on your merry way. The letter scheduling the follow up appointment where I will receive the results came through this morning, though. Thursday May 26th. I thought I had more time to enjoy the bliss of ignorance. The oncologist said it’d be 2 weeks which would have been the following week, but he probably meant within the next 2 weeks. It should have gone to the MDT meeting by then at least, so what I will learn in that meeting will really determine the next phase of treatment. It may have thrown me, though, as I wasn’t expecting it to be next week. I’m glad it is – the sooner I know, the better.

The other thing is that it is early in the cycle for me to be being so active. I usually have a few days before I have any time constraints or commitments, such as hospital appointments. My chemo-fog brain feels like it is operating on auto-pilot. It may explain my inexplicable ramblings about the nurse at the start of the post, but I’d probably do that anyway if I’m being honest with myself. I’m now sat at home reflecting on the ongoings of the day… all I need to focus on now is pushing through the cycle and getting to that results appointment.

Before I finish the post, my Fiancee Anna and her best friend Sophie are running their first half marathon this weekend. They are raising money for The Christie, the incredible hospital that is providing my treatment. I’ve always been fond of the below lyric ever since I first heard it, and it feels relevant here. The band is a christian metal band that you are unlikely to enjoy, but you don’t need to enjoy the music to appreciate a well-written lyric. Those of you who have followed the blog for a while have likely experienced the breadth of my musical interest – I will listen to almost any genre to find something new and interesting.

“The walls of a church don’t make it holy.

It’s what’s authentic that completes the sum of it’s parts”.

The intention of the writer is to give credibility to his religion, I believe. The sheer act of building a church doesn’t make it a special building, it is the value that is then applied to it by the people who believe that it is of greater meaning than another structure. They use it as a place of worship and it represents something more to them – these practices elevate its status and create authenticity.

I feel the words are so applicable to The Christie, too. There are many things about a hospital that provide it with authenticity – the qualifications required to work there, the complex equipment used inside and the knowledge that you went there that time when you broke that bone, and you left with a solution that ultimately fixed it. The Christie adds another layer of authenticity, though. The staff, and the way that they talk to you and treat you, is unlike any other hospital I have set foot in. You feel that they care about you, and it doesn’t seem like an act. I’ve had so many deep, interesting and meaningful conversations with the staff at this hospital. They’re always ready to support you, whether that is having a laugh or sitting down and digging deeper into what is upsetting you. Sometimes, you just want to be treated like a human, not another roadblock to someone leaving work. At The Christie, I’ve never been made to feel like anything but a valued customer in a complex ecosystem, which is full of charged emotions, tough revelations and, sometimes, utter despair. It is an incredible place, and I’m so proud of these two for raising over £1300 for them already.

I will raise money for them myself eventually, when I am healthy enough to do so. For now, I will include the link to Anna and Sophie’s fundraiser here. If you can donate, please do. If my requests to donate to fundraisers is preventing you from turning your gas on this month, please do not. I don’t want to carry the weight of that burden – I’ve already got pancreatic cancer, didn’t you know?