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.

After the Party

The ‘C’ Word

‘After the Party’ by The Menzingers

Music has an exceptional ability to conjure up complex memories and emotions. You have likely noticed that music, as a topic, is a common feature of this blog, alongside cancer, unsophisticated humour about blood nurses being vampires and baking. ‘After the Party’ by The Menzingers came on whilst I was in chemotherapy on Saturday. It immediately made me nostalgic for my past, and I spent some time reminiscing at the hospital. I decided I’d do a little blog post on some of these memories and trawl through some other songs that remind me of past times, which also came up as I took a trip down mental memory lane.

‘After the Party’ was introduced to me by a girl on a first date in Philadelphia in 2019. I realised she had quite an alternative taste in music which always entices me as I have always spent a lot of my free time and effort digging around for new artists of all genres, generally. She offered a wealth of artists, mostly of an alternative/rock type genre, which I didn’t listen to much so I hadn’t discovered many of them before. Many of the bands were relatively local, hailing from Philadelphia or New Jersey, the next state over. There is a lot of good music that comes out of this part of the United States. Another band that I love called Pinegrove are from New Jersey, and I listened to them a lot then.

‘Rings’ by Pinegrove

A lot of the music recommendations washed over me, but I loved ‘After the Party’. We quickly decided we got on well as friends, and there was never a romantic element to our relationship. I did go to a few gatherings at her house with her friends, though, and they did them well. They lived in South Philadelphia, which was quite rough-around-the-edges-trendy (and cheaper than the city). The house was 3 stories and had a lovely rooftop area overlooking the city skyline. ‘After the Party’ actually contains the below lyrics, which I listened to her friends sing in unison. They were liberally throwing their arms around each other; I enjoyed my drink and observed the comradery with glee. They were a fun bunch.

“With a new outlook on everything we see
From high upon this rooftop over South Philly

Funnily enough, the song immediately made me think of the time I spent at The University of Bath for my masters year in 2015 – 2016. I went with all the good intentions in the world… Get my head down, focus and walk away with a mastery of business unparalleled in the shark tank. I’d just finished my undergrad degree and managed to get a first despite not taking it extremely seriously, but I wanted to start expecting more from myself. I should have known better to think it would run that smoothly. Entering into a house share with 6 other random strangers from the internet, I was certain that this would be a calm and knowledge-enhancing experience. Day 1 of meeting Dee, one of my favourite people on this planet to this day, we decided to put vodka into a Pot Noodle. The red flags were there from day 1 – I was in trouble.

What proceeded was the most unhinged 3 months of my life. That is really saying something, as my friends and I had a propensity for unhinged behaviour before this, but the time in Bath really did take the prize. After the Party’s story of a volatile, substance-driven relationship always appealed to me because it captured the mood of that time so well. It smacks of immaturity; doing something because you want to do it and not thinking about the consequences of that mentality. Somehow the song captures this vibe perfectly for me. It is just chaotic enough yet melodic enough. The lyrics are nicely written, and I truly feel I can see them all play out in front of me, and they conjure up images in my mind from that period in Bath.

The phenomenon is strange, as I didn’t hear the band until 2019, so it had no relation to my time in Bath. Music has a fantastic ability to do that to you. It was a really fun time, but I don’t long to return to it. The memories all feel like they happened to a different person now. When I see pictures like those below, I smile a lot to myself at times passed and know that I’m more the person I want to be now. Even if it was fun at the time. Perhaps I needed that year to become who I am now, though – I learnt a lot about myself during it.

Things had to die down after Christmas. It is hard to keep up a lot of energy for drinking, going to bed late, spending a lot of money you don’t have etc. I’ve spoken before about how drinking sat quite uncomfortably with me too. I already had a complex that the behaviour was at odds with my favourite characteristics about myself: my productivity, waking up early, feeling physically good and exercising. It also made me feel like I was at my most appealing when I was drinking. That mindset really bothered me especially, as I wanted to have more to offer the world than just “he’s fun when he drinks”. I’m fun anyway, aren’t I? Still, the memories are great, and I made so many friends for life. Cam and Dee, who I met in that house, remain some of my best friends to this day!

The nostalgia train had left the station. I went to my phone and looked for another song that would somehow dip into my past. I landed on ‘The Ballad of Me and My Friends’ by Frank Turner.

The Ballad of Me and My Friends’ by Frank Turner

This song was played a lot among my friendship group when we were in sixth form, probably about 17 years old. I remember vividly being at a New Years house party at my friend Rich’s house. There were far too many people who were far too young to be drinking far too cheap cider. Classic English party vibes, really. There were people at the party who weren’t as integrated into our group and weren’t aware of the phenomenon that is ‘The Ballad of Me and My Friends’ by Frank Turner. When the song came on, they looked concerned as voices bellowed out of every room in the house and from the garden, singing along and throwing arms around each other. People were running and finding others to shout the lyrics at. It’s all sort of cringe, really, but it has also stuck with me for all of this time, so it must be significant. I sometimes hope that the portrayal of memories from the animated film Inside Out is accurate, and some part of my personality was defined at that moment. It is now concreted into my character as a core memory forever.

The song’s recording is done live in some capacity, and the way it has been produced makes you feel like you are sitting watching him perform it in front of you. It adds to the magic of the song. When the background voices come in during the lyics ‘And we’re definitely going to hell, but we’ll have all the best stories to tell’, you can see why it became an anthem among a group of angsty teenagers; drunk off cheap cider and enjoying the novelty of a ‘free house’ on New Years Eve. It adds to the feel that you’re sat somewhere watching a friend play a song, and everyone is joining in at the apex of the lyrics.

I can’t remember how the song got into our group. It was probably through a member of the group called Ben Hackett. He actually ended up getting the quoted lyrics above tattooed on him, then went to a Frank Turner show and managed to show him the tattoo. There was a picture of them together on Facebook, but I deleted my account years ago. I wonder if he still has the lyrics tattooed, but I don’t see him often anymore, and I haven’t thought to ask when I have seen him. Tattoos are usually, by definition, permanent, so I assume he has, but I have had a tattoo covered up before, so I’m not easily tricked by their ‘permanence’.

Anyway, times are different now. The nostalgia is pleasant and is an excellent technique for getting through the tough chemotherapy sessions. It was a really lovely method of escapism today. It made the time go much quicker towards the end of the session, so I have it to thank for that. Music can bring so many memories flooding back, both good and bad. ‘After the Party’ definitely didn’t bring up all good images of my time at Bath. Many things were plaguing me at that time, such as dysfunctional relationships that were fuelled more by alcohol than any genuine feelings. You also learn a lot from those experiences, though, and I look back on them as a very different person with a newfound clarity over what was valuable about it and what wasn’t. Lots of it was useful, even if I didn’t study anywhere nearly as hard as I should. I still ended the year with 68%, 2% off the highest past rate. I can’t complain, really. I got 75% in my dissertation, which completely floored me. Life is not about how hard you study, though; there were plenty of other things I learnt during this time and in the proceeding years that were nothing to do with any degree I acquired. Hearing ‘After the Party’ for the first time in Philly on that rooftop immediately captured a mood for me, one that I can easily tap into any time I listen to it now. It’s lovely for that reason alone.

Feel free to comment with some nostalgic songs you like and any stories they bring to mind. I’d love to hear them and see if I can paint the image whilst listening! This was quite an alcohol-heavy reflection on my past. Next time I will talk about some music that reminds me of other times in my life. Any excuse to reminisce!

A Propensity for Emotional Pain

The ‘C’ Word

Glastonbury festival, 2019. I was gingerly walking between stages in the late afternoon on Saturday at about 16:45, sipping on a drink and feeling as carefree as I remember ever being. The mood among the group was jovial after days of drinking, meeting new people and watching lots of live bands, most of which I cannot name to this day. England was in the middle of a heatwave and the temperature was sitting just above 30 degrees celsius. There were crowds of people huddled under every shaded piece of ground seeking refuge from the heat. Then there were the deviants like us, too tipsy to care but skin red as a fire engine. As I approached the Other Stage, I saw the biggest crowd I had seen at the stage yet. It was so over-capacity that the crowd had extended into the walkways between tents. The bystanders were wondering who or what had amassed such a crowd, making them also stop and growing the crowd even further. We stopped and turned towards the stage to see a large banner with the name ‘Lewis Capaldi’ on it.

I didn’t know any of Lewis Capaldi’s music at the time and still don’t really. The whole crowd was singing along to the chorus and the mood was magical. What surprised me was that the song was very slow, with only a piano accompaniment and emotionally fraught lyrics. I now know that this song was ‘Someone You Loved’, a massive hit with over 2 billion plays on Spotify. I say it surprised me because we were at Glastonbury festival, where people go to have fun and let go of the woes of the real world, yet there were thousands of people all belting out the sombre chorus in unison:

‘For now the day bleeds into nightfall

and you’re not here to get me through it all

I let my guard down and then you pulled the rug

I was getting kinda used to being someone you loved’

The words seemed completely at odds with the mood. People were smiling, holding each other and shouting at the top of their lungs. It was quite an inspiring scene, and even Lewis seemed genuinely awe-struck as the camera focused on him. I still think about the whole thing now, and how negative/distressing emotions seem to strike such a chord in many of us.

I’ve always considered myself someone who has a propensity for more negative emotions. If you have read any of the poetry I have written on the blog, you’ll probably have noticed that it is all fairly negative. It was the same when I was 14 and my guitar teacher encouraged me to try and write my own song. He had a load of recording equipment in his office that he used to make his own albums. Upon playing him the song, he told me I should record it with him; so we did. My grandma had recently died and I remember sitting at her funeral, watching my grandad grieving and trying to imagine what it must feel like. I ended up writing a song called ‘Roses to the Fire’. Listening to it now, I am rather impressed with my 14-year-old self. The lyrics were based on a scenario I’d thought of in my head, of a grieving loved one missing their partner so badly that they were sure that they started to see them. I’m not impressed with the vocal performance, but the guitar was nicely written and came across well in the recording. I’m giving it away for free now so, enjoy, but not in earshot of me as it makes me cringe far too much.

‘Roses to the Fire’

This propensity for negativity annoys me about myself sometimes. In my mind, I feel jealous of the kindred spirits out there who seem to live carefreely and have a mind which is untouched by the negative. When I think about it more though, this propensity for negativity is so universal that I doubt there is anyone who is truly that carefree and positive. The crowd I witnessed at Glastonbury that day has made me think a lot about people’s draw to pain and struggle, and what it all means. It is so strong that it can be difficult to separate the art from the artist. As far as I can tell, Lewis Capaldi comes across as a very positive person outside of his music. He is known for his antics on Twitter, being very self-aware and ready to make jokes at his own expense. A quote of his that hit a soft spot of mine was when he said, “The amount of people with receding hairlines that tell me I’ve got a shite haircut is astounding.” Touche, Lewis. I’ve never said a word about your hair but you seem to have taken a shot at mine.

But why would we assume that someone’s personality is a direct reflection of their music? Is it fair of us to expect someone who is good at writing emotionally fraught music to also be a depressing, mood-sucking individual who only talks of breakups? Of course, the music has been written by that person so it must reflect at least some of their personality, character etc, but we seem to assume that it will be a reflection of their entire being. People are far more complex than this, however, and it would be unusual if a person who was very talented at writing breakup songs was in a constant state of being heartbroken from yet another perfect relationship that has failed.

In my experience, the reason that negativity can bring such a creative spark is that those emotions are stronger. As a result, they have a bigger impact on me and force me to write in a way that positive emotions don’t. When I am feeling positive, I am usually in flux, chatting with friends or experiencing something. The parts in-between aren’t filled with me being depressed and upset, but it is easier to draw on those emotions because they have made a larger impact on my experience. A few nights ago I tried to write a more positive poem about my fiance. I was feeling frustrated at myself because I only seem to write things that are negative, so I tried my hand at it. I told myself not to think about it too much and just write something that I thought was genuine. The words came fairly unnaturally, and it wasn’t at all like my normal process of writing poetry. I sat crying on my own as I read it back, and I struggled to understand how I ended up writing something that depressing. My current situation in life is quite charged to be fair to myself, so when I try and reflect on things that are important to me, it can turn sour. “Never trying that again,” I thought. Sorry, Anna.

What I like about writing for the blog is that I do manage to find positivity as I write. It feels easy to interject humour into written prose, in a way I seem completely unable to in my poetry or songwriting (although my songwriting career was short-lived). I think it is because I am not generally a miserable person, similarly to someone like Lewis Capaldi. Although my mind has a bit of a propensity for pain and misery, I find ways to work through those emotions and usually find myself in a good place. When writing, I think I follow a similar process to arrive at the end product. It allows me to explore the things that, on reflection, were actually quite funny about a bad situation – like the one described above of me trying to write a romantic poem, only to be sat crying on my own and feeling stupid.

I am sure there are people whose experience is very different to mine, and who draw on positive situations far more than negative when being creative. Creativity comes in many forms, perhaps creative outlets outside of poetry and song-writing actually conjure up much more positive emotions in someone. I would be really interested to know, and maybe then challenge myself to explore some of those more ‘positive-seeking’ creative outlets. For me, writing is allowing me to introduce some positivity to my creative process, and I am extremely happy to be doing it regularly.

Oh, and just to substantiate my claims about my romantic poetry being the most depressing, you can find the poem ‘For Anna’ below. Brace yourself, it isn’t fun.


For Anna

A bond forged by humour and content
Stronger than the sum of its parts

Together

We wrestle with the complexity of life
Recognising the potential in every day

Together

And eventually we will part each other’s company
But safely in the knowledge that we lived

Together, as one