Surgery and Yellow Mayonnaise

Taken 04.06.22 at a Music Festival

It has been a few days since the meeting with the surgeon. The response has been a bit varied among my family and friends. Surgery certainly makes everything more real. Knowing it is a major operation which carries so many risks brings an entirely different element of worry to the situation, I get that. If the situation with the tumour was more positive and the surgeon was more confident he could do a full removal, the decision to push on with surgery would bring a further level of comfort that it is the best decision. Seeing as this is not the case and that the tumour seems to be surrounding the artery still, it brings much more anxiety for all involved. For me, I will not be conscious for any of the surgery, or even most of the intensive aftercare. It is everyone else who will have to painstakingly sit for hours, waiting for the news of how the surgery has gone, what they managed to do, and if there were any ‘complications’. By the time I’ve found out these details, it’ll likely be days after the operation. I’ll be off in dreamland, so deep under the influence of drugs that I’ll probably be exploring Narnia from my vantage point, riding on a dragon’s back (I’ve never had a dream like this so I’m not sure why I would start now, but it’s nice to dream about the potential of your dreams).

There have been a lot more tears since Tuesday. Perhaps it is a combination of learning what my staging is and having it clearly communicated that a full removal is unlikely. It could still happen if the scan failed to be accurate in its portrayal of the tumour, but he seemed to doubt it would be so wrong. I did do another CT scan at the hospital, so I’m waiting for the surgeon to call me with the results of that. Perhaps he will be more confident of what will be done in surgery once he has reviewed it, assuming the scan is better quality than the last one and offers more insight. Nano-knife is the most likely outcome. A full removal is not out of the question eventually, I believe, but the surgeon didn’t seem willing to discuss such a scenario. I didn’t try, to be fair. He had an air of confidence about him which was tantalising. Every sentence was carefully thought out, every word scrutinised in his head before it left his mouth. These situations are tense; you could tell that he was experienced in dealing with them.

I’m unsure whether he will do some form of partial Whipple no matter what he decides is possible with the tumour. I need to ask him when he calls me about the scan results, but it’s one of those things that I’m unsure whether getting an answer is better for me. It seems easier to just wake up after surgery and face the music then. The outcomes sound so varied depending on what they see during the operation that I doubt I’d get a straight answer anyway. At least I trust this guy to tell me that the answer isn’t easy and I’d believe him if he said as such. The fact that there is a cyst on the other side of the pancreas to the tumour indicates that the surgeon will have to do more than just deal with the tumour. We did ask him if he would be removing the cyst despite what happened with the tumour, and he said that he would. It was funny – his reaction was almost like this was a total afterthought – an irrelevancy in the face of the cancer. “Oh yeah, there is a cyst there too, isn’t there? Yeah, we’ll get that out,” he casually said when the question was put to him by Anna. Surgeons are so casual. They must realise that their job terrifies the other 99.9% of people on planet earth. I’m sure that there’s a smugness that comes with that territory. I’d certainly be smug about it if I were one. He didn’t seem particularly smug at all. After arranging the CT scan on the phone with the radiology department, he said that he needs to get a nurse to put the cannula in. “I can do surgery on you but I can’t cannulate you,” he chuckled – I suspected this was that smugness coming in to play.

One of the things I have changed about my behaviour recently is my diet. Since learning a little about the immune system and how it is constantly fighting ‘bad’ cells being created in your body, I have been much more taken into the idea that your immune system plays a vital role in how your body battles cancer. Before, I thought whether you developed cancer or not was more a thing of luck, with a heavy dose of genetic makeup. The book I am reading seems to suggest that this is not the case. He references a study about fostered children. The study was conducted in New Zealand as apparently they have detailed records about births and biological parents. In the study, they measured the cancer rate among a group of people who were fostered from a young age. If the formation of cancer was more down to genetics, the numbers in people who suffered from cancer would be similar between the focus group and their biological parents, irrespective of whether they were raised by foster parents or not. If the formation of cancer was more down to behavioural patterns rather than genetics (e.g. diet, exercise habits etc), then there would be less significance between children and their biological parents, and more significance in the trends between the foster parents and the children they adopted. The study showed the latter, indicating that the formation of cancer was effected more by behaviour than genetics.

Now, I’m not suggesting this single study proves the point entirely, and more importantly, I have not looked into this study myself and do not plan to. It is enough to convince me that behaviour must be more important than I perhaps anticipated. As a result, I’m trying to avoid processed food as much as possible, based on some scrutiny of these types of foods. Turning over a food packet to look at the ingredients and seeing different types of sulphites listed is a little concerning to me, even with my limited knowledge of sulphites (and believe me, my knowledge is limited). A quick Google tells you that they are only dangerous for a small number of people who have problems with asthma. Does this mean that it is only an immediate risk to these people, though? I can’t imagine digesting a lot of additional sulphites is good for you, never mind the fact that they are added to foods to preserve them. Anything that makes it harder for the world to digest the food (i.e. through the process of bacteria breaking it down), sure means that it is harder for your body to break it down. The more unnatural the ingredient is that you are adding to preserve the food, the more dangerous it would be for your body, I would assume. It makes logical sense to me. The world isn’t always logical, though, so maybe I’m barking up the wrong tree here.

Yesterday morning, I decided to Google ‘should you avoid food preserved with sulfites’ to test my theory. I had seen ‘Sulphite Dioxide’ on the back of the packet for some dried apricots and it got me interested. Notice that I did not add ‘if I have cancer’ onto the end of the question; I’m not even getting into that with Google. Searching for anything specific to cancer with Google can lead you to all sorts of dark corners of the internet. It seems to be the most prolific hearsay topic on the planet.

The first article I clicked on was one titled 5 Food Additives You Should Avoid. According to this list, and after doing more reading around, it seems that sulphite dioxide has a low toxicity for humans in most cases, so is generally regarded as safe. As I stated previously, though, I’m sure it isn’t completely inconsequential eating it in a lot of your food, but anyway. The thing in the article which got my attention more was food additive number 1 in the list – Sodium nitrates. Want to know why? Because it states that they increase your risk of pancreatic or colorectal cancers. If there is one way to grab my attention, it is by throwing around the name of my beloved cancer. Pancreatic. Dancreatic. Dan’s Dancreas. Dan’s Dancreactic Dancer. Anyway…

Apparently, sodium nitrates are mainly added to meat to stop it from discolouring. That should make them extremely low risk for me, an individual who does not and has not eaten meat since 2016. Perhaps this is another cruel irony of the world, like when a non-smoker gets lung cancer. During the digestion process, toxic chemicals are released due to the sodium nitrates being broken down by stomach acid. It is them which pose a threat to humans according to the limited research I did on the web. Rather than always researching other people’s research, I thought I’d conduct my own. I headed down to the kitchen, opened the fridge and found a packet of bacon. It had come from Waitrose, one of the more expensive supermarkets here in the UK. I turned the packet over and read the ingredients. Just like that, I completed my study. Sodium Nitrate. Confirmed – it is indeed added to meat. Study complete. Science is so easy. You probably thought I was somehow going to confirm that the breaking down of sodium nitrates in the stomach releases deadly toxins didn’t you? I’m not that good – go speak to a real life scientist if you want real research.

It just feels like a minefield trying to investigate diet further. Information seems so inconsistent and you wonder how things get approved for use if they truly are so bad for you. What is true, apparently, is that cancer rates in the west are much higher than in the east, and it would make sense to me that the key difference between us is diet. We have been eating highly processed foods for longer in the West, with the quick growth of fast food since chains like McDonald’s grew in popularity. Now processed food is everywhere and considered very normal. We look at things like butter as being intrinsically bad, despite us being able to comprehend how butter is made. Look at the back of a margarine tub and try to figure out what on earth the ingredients are in it – half of them sound like they belong on the back of a toothpaste packet or something. Do we really feel better eating that just because it is lower in calories? Fats are very useful to us humans, we seem to forget that fact. My body struggles to process them now and I have to take supplements constantly to ensure they are being absorbed by my body. What I’m trying to say is that you should revel in the fact that your body can absorb fats naturally (if it can) and utilise it by eating full fat butter, damn it! I do it now more than ever and it is a beautiful luxury.

Sometimes I find myself pondering whether knowledge is power or not. Do I find myself feeling empowered by it or intimidated by it? The question never feels more applicable than when trying to research diet and cancer. My new thing is to mercilessly avoid food with preservatives in it, where possible. All of a sudden, I am not eating any crisps, baked goods from the shop or heavily processed chocolate bars; those of you who know me personally will understand what a huge deal that is for me. If I want something sweet, I try and bake something quickly. For example, I’ll bake apricot and walnut bars to have at breakfast, alongside fruit. I’ve started making my own mayonnaise instead of having it out of a bottle; the home-made stuff is much more yellow than white – it’s strange when you have only just started making it yourself. It really does taste lovely when fresh and you can mix up how much mustard you put in it, which is nice. The next step is to learn to make loafs of wholemeal bread but I’m building myself up to that. It’ll probably take me a morning to get into it as dough is not something I have worked with so far. Rivetting stuff, dear reader, I know. This blog is probably your guilty pleasure these days with such innane ramblings about diet and food, if you even try to have any pleasure from it. At least it isn’t all cancer cancer cancer; it also makes you feel guilty about enjoying the foods you’d normally mindlessly eat.

Yet, this obsession with avoiding preservates is probably just a new scheme to feel in control of the diagnosis. I’m not suggesting that it doesn’t assist in the fight against cancer too, but plenty of people have spent their entire life eating terribly, not having a care in the world about how many preservatives are in their bacon sandwich, yet don’t develop cancer. It is difficult to reconcile that, as I believe I’ve lived a fairly healthy life so far and still managed to get cancer. The fact that I likely ran 100km with the beginnings of cancer brewing in my pancreas is almost comical to me at this point. It was after I had originally got to the doctor’s complaining of stomach issues. The result of that was multiple scans at the hospital, but with no meaningful results. Their conclusion was that I had a strange form of constipation; it never convinced me. I guess when your tumour is 3.2cm at its largest, it is difficult to see with conventional scans. You have to step up to the expensive PET scan which they weren’t willing to do at the time. They don’t tend to assume that an otherwise healthy adult in their late 20’s would have pancreatic cancer; I know that from the first few weeks when trying to be diagnosed – “It’s probably pancreatitis but we can’t rule out cancer, although it’s very unlikely to be that.” I can’t remember how many times I heard words to that effect, but it was a lot.

So, here I am. Dan with the Dancreatic Dancer trying to research diet in an attempt to stop the Dancer getting the better of the Dan. Maybe the fight against preservatives will provide a useful distraction over the next few weeks, until the surgery day comes. Making everything from scratch is certainly time consuming. I’m getting used to the yellow coloured mayonnaise now, anyway.

A Shift in Time

Time has been on my mind these past few days. Because this chemotherapy cycle started on Monday instead of Saturday, my perception of it is all over the place. I keep having to think in terms of where I would be up to in my normal timeframe… “Ok, so today is my Tuesday. I don’t usually run until at least Wednesday and regularly struggle to get out of bed until that same day, so I need to try and relax today.” This is the sort of logic I am knocking around in my mind. It is throwing my week off considerably, as I keep thinking it is the wrong day and finding myself confused at feeling a certain way still. For example, today was my first injection day, but this usually falls on a Tuesday. It may sound minor if you haven’t been on chemotherapy before, but you establish certain routine behaviours and expectations. I usually expect to start picking up by the following Saturday, for example, but in this cycle that will be the following Monday instead.

I was sent the medical report from my oncology team to submit to work yesterday, on Wednesday. This report is to help support a case that I can return to work on a reduced number of hours. On Monday, whilst at chemotherapy, I received a call from my specialist to discuss it. He wanted to ensure that he was not only supporting me in what I wanted but also confirming that he agreed with the things being stipulated regarding the return to work. He did not want to support a position he viewed as untenable or unsuitable. “Are you absolutely sure you want to return to work?” he asked at one point. It is an interesting question. I’ve thought about it a lot since he asked it so straightforwardly. Especially so given everything else he spoke to me about – the continuing treatment, the changing of circumstances depending on how well received the treatment is, and the seriousness of the type of cancer I’m dealing with. He did also state that keeping my brain engaged is important, though, and that having more financial stability is also important if it is worrying me. It certainly has been. I do feel ready to try and return to work, I think. The only way to find out is to do it, anyway.

Excitedly, I opened the report as soon as I saw the email. I’ve been chasing it for a few weeks, so it genuinely was exciting to receive it. Not one to take my own advice regarding not Googling things, I saw the phrase ‘locally advanced adenocarcinoma of the pancreas (pancreatic cancer)’ and immediately headed over to Google. Every time I see ‘locally advanced’ written, I already feel a jolt of uncomfortable reality strike me in my stomach. For some reason, I get into a routine with the chemotherapy, where I manage to get back to running a few times a week, and feeling more ‘normal’ the further away from treatment day I am, and I stroll into a mental complacency. Everything will be alright; how could I feel this normal if it wasn’t going to be? The phrase ‘locally advanced’ bites back against that confidence – maybe I’m not so safe after all, I start to think. I don’t know why as I’ve known my cancer is locally advanced since being diagnosed, but you always want your cancer to be staged in the best possible way for your survival; mine isn’t.

The part that I googled was ‘adenocarcinoma’. I’d heard this word said a few times in the hospital, and have seen it written a few times too, but I had no concept of what it was, really. From my brief Googling, I believe it is where the cancer begins in the mucus duct, and it seems fairly common in pancreatic cancer with one website saying 85% of cases are due to it. I was quickly put off divulging too deeply into the topic, however, by the list of phases accompanying it – all very common when Googling Pancreatic Cancer, unfortunately. ‘Deadliest cancers’, ‘10% of pancreatic cancer survivors alive 5 years after diagnosis’ etc etc. You’d think I’d have a thick shell to it all by now, but it got to me. I started to cry for the first time in a while. Sometimes it’s good to experience these emotions, I guess, but it’s also nice to know that this was the first time I’ve experienced them in a while.

I delved straight into my sad music catalogue as a form of catharsis. Julien Baker has plenty of songs that meet the profile nicely. ‘Something’ seems to be the song that has stuck as I’ve been frequently listening to it over the last 2 days. Despite clearly being about a relationship breaking down, it has a few lines that stick out in my mind. I wanted to draw on them and discuss them in context of my situation.

Julien Baker – Something

“The walls of my skull bend backwards
And in like a labyrinth”

As I sat reading about adenocarcinoma, I felt a sensation in my head that I feel Julien demonstrates here really nicely. A pressure builds up in my head that becomes unbearable when I try and contemplate too much of what is going on at the same time. It’s Ok when I manage to compartmentalize it, but when too much information hits my mental at once, it all becomes overwhelming. My mum happened to walk into the room as I sat with the pages open on my laptop. She asked me if I was Ok and that is when I started to cry. There was a lot of information going through my head. Everything felt hopeless all of a sudden, and I couldn’t find a way to decrease the tension building in my head.

The idea of it being a labyrinth, not allowing any escape for those negative thoughts, getting lost within the walls and not allowing them to be processed, sits so nicely with how I was feeling. It has happened to me a lot of times during this life-changing experience. I remember a similar sensation happening as the doctor delivered the final diagnosis, whilst I sat on the hospital bed trying to contemplate the words. Hearing my mum and Anna break down into tears around me, whilst trying to focus on what he was saying to me. Trying to determine how serious the diagnosis was, trying to hold myself together whilst feeling the people around me suffer. It was hard.

I knew I was wasting my time
Keep myself awake at night
Whenever I close my eyes
I’m chasing your tail lights

These lyrics really speak to the hopelessness I briefly mentioned earlier. For some reason, I started getting a feeling on Monday evening that my treatment was hopeless, and that I was engaged in a losing battle. I’m not sure why as these lines of thought seldom come to me – I really do manage to stay positive most of the time.

The lines ‘Whenever I close my eyes, I’m chasing your tail lights’ really nicely illustrate the feelings I had towards the cancer at that moment, as I sat speaking to Anna on Facetime. It felt like I was 2 steps behind it, only identifying it from behind and never getting in front of it. That is the problem with being a patient, surrounded by specialists in a field that you have very little understanding of. You sometimes wonder if you have really understood the diagnosis, and worry that the medical team are either shielding information from you or haven’t managed to communicate it in a way that would allow you to understand. This has been much less of a problem since being at The Christie as I feel a huge amount of trust in my team there, but it doesn’t stop me from misunderstanding things that are said to me.

Sometimes I feel confident that I understand my diagnosis, but it only takes a word such as ‘adenocarcinoma’ and you’re back to feeling vulnerable. In reality, I probably walk a line between reality and delusion – reality kicks harder when the more difficult aspects of the treatment are prominent, and delusion sets in during the better periods. In a good cycle, I can run 27 miles in a week, go out for dinner a few nights and feel relatively normal (other than the catalogue of drugs I have to take to reach that normality). On a bad cycle, though, it is quite the opposite; getting out of bed can be difficult, and I spend much of my time fighting the sickness and trying to sleep off nausea. These are the more palatable side effects and those who have read through my Chemotherapy Diaries series will likely understand more about the unpalatable ones.

I just let the silence swallow me up
The ring in my ears tastes like blood

Again, these lyrics likely mean something else to the artist but very specifically appeal to the effects of the chemotherapy to me. A metallic taste in the mouth, similar to the taste of blood, lingers badly for a few days during and after my treatment. This concept of a blood taste in the mouth, coupled with the idea of silence swallowing me up, ring so true to my experience of the first few days after treatment. A friend of mine who survived cancer used the term ‘Chemotherapy Fog’ earlier. It’s a nice way of describing it. I usually spend a lot of my time in bed for the first few days after treatment, in and out of sleep and struggling to draw a line between consciousness and reality. I have to eat strong mints constantly to get rid of the metallic taste in my mouth as it makes me feel extremely sick. The time spent alone in bed, shifting in and out of consciousness, can put me in a very strange headspace. Sometimes it really does feel like the silence is swallowing you up, and you experience some of the lowest moments when you’re alone with your thoughts and in this vulnerable period. I’ve also experienced some of the most positive breakthroughs in these moments alone, though. I find myself needing space to process information and get my head in the necessary places to keep fighting through the harder times. You’re constantly left to the whims of your vulnerability, and it can take you either way.

If you enjoy the song above, I really recommend checking out the whole of the below Tiny Desk Concert by the artist. She has an incredible way of layering the guitar and creating the most impressive soundscapes, whilst delivering an overwhelming amount of emotion in her performance. I remember the first time I watched it and the whole video had me totally immersed from start to finish. The second song, Funeral Pyre (or ‘sad song number 12’ as she refers to it during the video) is particularly haunting.

I Guess We’re Mortal After All

I’m feeling emotionally volatile this week. It is probably a combination of a few things, but I’ve been trying to come up with candidates in my mind. My third cycle of chemotherapy has been feeling harder than the others mentally. There is always a lull period after a positive build up to Christmas, where the excitement dips again as another year draws to a close. I also wonder if I am experiencing a down period after finally releasing the blog, after thinking about the concept over a matter of weeks and feeling so excited by it; it doesn’t diminish my sense of accomplishment and satisfaction with the blog, but I think it is worth mentioning as a potential factor.

I’m finding myself gravitating to a metal band called Architects’ 2018 album titled ‘Holy Hell’ at the minute. It was their first album release after their guitarist and one of their founding members, Tom Searle, died of cancer in 2016 after a 3-year battle with cancer. Tom Searle’s twin brother Dan Searle is also a founding member of the band playing drums. He was aged 28 when he died, the same age I am now and the age I was diagnosed with pancreatic cancer. Together, they were the sole founders of the original band.

The band are undeniably “heavy” and will not be to everyone’s taste, but the album is littered with poignant and heart-wrenching lyrics of loss and grief. In a different sort of post, I am going to pull out some of the lyrics which speak to me in my current headspace and talk about them.

Dan Searle is credited for these lyrics as far as I can see, so you know that they are coming from a place of real pain and loss. Despite being very close with my entire family, I cannot imagine what Dan Searle went through writing these lyrics and processing the situation. These twins were founding members in their band who went on to become one of the most successful in the genre, in the UK and beyond. They achieved so much together, yet Tom’s life was drawn to a tragic, premature close. Unfortunately, that is the reality of cancer sometimes.


Mortal After All

Have you forgotten the deal we made?
I've seen the end and the pain we trade
All these walls will fall
I guess we're mortal after all

I can only speak to my experience here but accepting my own mortality has never been easy for me. The cancer diagnosis certainly forced me to address this somewhat dark reality: that life is fragile, age is not a guarantee of health and that one day, we all must address the fact that we are mortal after all. The thing I have always wrestled with more is the mortality of the ones around me that I love. When I was young, I would spend a lot of time worrying about my parents and how they may die. Would they suffer? Are they scared of death? I’d torture myself over those questions more than I would ever torture myself over the question of whether I fear death or if I would suffer at its hands. It didn’t seem relevant to me yet; I was too young to think about it. Something I have learnt about myself in this process is that I genuinely don’t think I fear death or suffering. For the first 2 weeks after my diagnosis, I did not get any reassurance from any medical professionals that I had a good chance of survival. It felt like it was time for me to accept that this will likely kill me, something which I thought would be daunting. In reality, I could only think of all the incredible people I know in my life, the friends I’ve met, the things I’ve done and the times I’ve shared. I felt no fear of death, only appreciation of what I had in my life. To be able to die feeling that way felt like an honour, and I was proud of it. The ultra-marathons I revelled in entering took a lot of suffering, both to train for and to complete. My suffering at the hands of the cancer isn’t so different, and I’m sure if I manage to beat it, the end will feel comparable to other fitness events I have completed, but with a much higher degree of emotional intensity and reward. It is a reminder that we are all mortal though, a fact which isn’t worth dwelling over constantly, but worth remembering.


Doomsday

They say "the good die young"
No use in saying "what is done is done" 'cause it's not enough
And when the night gives way
It's like a brand new doomsday
What will be will be
Every river flows into the sea, but it's never enough
And when the night gives way
It's like a brand new doomsday

I remember first hearing this song and finding the lyrics in the chorus utterly devastating. The injustice and pain of the situation cut through the song, with the added depth of the shouted vocals and driving guitar riffs. You can feel the anguish just reading the words. In my current situation, I really relate to the concept of a brand-new doomsday being felt over and over again. Some mornings I wake up and cannot control my negativity over the situation. The morning brings a new doomsday which I must work through. It is not the same doomsday as Dan is likely writing about, as his is one of grieving, but I like to think they are coming from a similar place. The imagery of the line ‘Every river flows into the sea, but it’s never enough’ always strikes me. Us humans are quite self-centred generally, and we get very caught up in our own reality. But the fact is that the world continues whether we live or not, and we are the only ones really trying to seek meaning in any of the things taking place. Everything else just is. It may feel like it isn’t enough for us because we attach so much emotion and meaning to things that occur in the world, but in the grand scheme of things, everything that happens just happens. Although it sounds nihilistic in a way, I take a lot of positivity from this fact. If my life is due to end at the hands of pancreatic cancer, then that is Ok. I am not naïve enough to think that I am making it out of life alive, I just hoped I would not be dealing with this situation at such an early age. But there are plenty of people who have died younger than me, who have suffered more than me, and who are battling far more difficult situations with less support than me. I was born into a love-rich family, in a wealthy country and with a stable life around me. The world will carry on whether I live or die, and I like to think I will have left an impression on the ones I love that will keep my memory alive longer than my body was ever capable of.


A Wasted Hymn

Is this penance for my sins?
I gave everything for this phantom limb
Holy Ghost, nothing lasts forever
Now it's time to sink or swim
I've got nothing except this wasted hymn
Holy Ghost, nothing lasts forever

I got into A Wasted Hymn a few years after the album came out, only a few months before being diagnosed. It came on random on my Spotify I think, and the chorus spoke to me more than it had any other time that I had listened to it. The feeling of hopelessness is so well portrayed in the chorus, with the attempt to excuse it in the words ‘Holy Ghost, nothing lasts forever’. The fact that the hymn is described as wasted emphasises that the feeling is that the subject, Dan, feels as though the words mean nothing if they cannot change the reality of the situation. Or that is how I read it anyway. For me, the song strikes a lot of emotion in me as it makes me think about my loved ones trying to process what is happening and may happen to me. Will the same feeling of hopelessness and nihilism be prominent in their thoughts? Will they try to blame themselves in some way (‘Is this penance for my sins?’)?

All these lyrics are a grave reminder that your death doesn’t end all the pain for everyone else, it is the beginning of a new pain for the people who love you. All I can say to reassure them from my perspective is that I truly believe that death is the end of the pain for the person dying, and that you must hold onto that fact. Sometimes, it is the only positive that can be drawn from a person’s death. The world existed for an inconceivable time before we were born, and it will continue to do so after we die. Although our lives are full of meaning and beauty, we are all bound to fade back into nothingness eventually, and that is what makes life so special, as well as painful… nothing lasts forever.