It’s been a minute…
The monthly subscription fee for WordPress has been coming out of my account every month. I usually open the notification from my bank when it appears on the home screen of my phone, and greet it with disdain as it torments me – a subtle reminder of how little I’ve been writing; I haven’t written for the blog at all. At least I am paying WordPress for the privledge.
My original excuse to myself was that I needed some space from it all. When you’re embroiled in a struggle against cancer, chemotherapy, recovery from surgery, you don’t find a lot of room for anything else. Similar to when you go and see a film in the cinema and you get lost in that dark room; when you leave, you almost feel shocked that people are walking the streets and driving their cars, going about their normal lives. Was I the only person locked away in that dark room? Did the world not suspend itself until I re-emerged 3 hours later? It should have. Nothing means anything if someone is not there to perceive it, and I, as the protagonist in this world, am the only thing that matters – right? Wrong.
I’ve spent a few months getting back into the swing of having a normal life. I say normal, I’ve still found myself rushing to A&E in an Uber, then painting the pavement outside of the hospital with my own vomit approximately 0.1 seconds after closing its door. Not necessarily normal, but that is my new normal. Since my operation, I’ve learnt that I have a large buildup of scar tissue in my bowel which occasionally causes the bowel to get blocked, or twisted during the process of digestion. It has led to me being admitted to the hospital about 3 times since my operation. One of these times I have already written about on this blog. The most recent one was the worst experience of them all. I was walking my dog in the park after going to the gym that morning when I started getting a stabbing pain in my groin. After cutting the walk short and returning to my flat, I spent about an hour moving between positions on the sofa, trying to find one that helped subside the pain. Nothing did.
Anna and I turned the flat over trying to find the liquid morphine that I was prescribed a couple of months ago to help with the more intense bouts of pain. We couldn’t find it; we still haven’t. Instead, I found some opioid tablets in my vast chest of medication (it is actually a hamper box that we received last Christmas, but ‘chest’ is a more satisfying description). I threw them back. They kicked my brain off kilter just enough to allow me to drift into a sleep for 45 minutes. When I woke up, the pain was angry. It had gained traction since I slipped off to sleep, and now the stab had graduated into a deep twisting pain throughout the left side of my groin. I pushed my fingers into the spot, trying to relieve it any way I could, but it didn’t do anything. Crying out in pain and struggling to breathe, we decided that we needed to go to hospital. I threw up, then the Uber arrived. 15 minutes later, I was throwing up outside the hospital, before being ferried in on a wheelchair. I must have thrown up another 6 times over the course of the next hour.
I spent 2 days in hospital and was barely conscious of any of it; morphine is a wicked mistress, but damn does it do a good job under such circumstances. I had a tube shoved up my nose and into my stomach, which kept me company for 30 hours. They kept mentioning the possibility of emergency surgery, depending on whether the issue started to subside on it’s own or not. No food. No water. No resolution. They let me go and said it might happen every few months; apparently, more surgery can just result in more scar tissue forming, so they only do it when the patient’s life is in serious threat. I think death would have been easier; the whole thing was terrible.
There’s a strange dichotomy in life after cancer. Reflecting on the months of chemotherapy, when I wasn’t sure if it would do enough to save my life, I actually think I was really happy. The diagnosis had given me so much perspective on what was amazing in my life. Every moment was beautiful in one way or another. Now, it feels like I am battling a veneer that sits between myself and my ability to be happy at all.
I’ve been reading Rob Delaney’s book A Heart That Works. It is about how his 2 year old son died of a brain tumour. In it, he says that he doesn’t feel comfortable around people that haven’t had some form of extreme trauma in their life. It really struck a chord with me this time around (I’ve read the book before, but I did so in a single afternoon and I could barely make sense of the words through the endless stream of tears that were forcing their way out of my eyes). I’ve found myself listening to someone complain about something, but struggling to process their problem. All that happens in my head is a voice starts saying to me “you’re going to fucking die anyway; why are you even bothering having friends at all.” I’m being a little tongue-in-cheek there, but it isn’t miles from the truth.
I don’t understand how I can be so unhappy now, when the prospect of living is actually a very real and plausible possibility, yet I was so happy in those months of brutal uncertainty. It makes me feel selfish that I can’t be more grateful for the chance I’ve been given, but I know it is more complex than that. I hear people complaining to each other that they feel hungover, or how they hate Sundays; it bores me to my core. I feel an urge to seek out stories of intense pain and suffering. I find myself listening to more sad music. I think about how the sun is burning hotter and how the universe is doomed to die. It brings me comfort – my experience is futile in comparison. Children get brain tumours at the age of 2 and die, then their parents have to wrestle with the consequences. Why wouldn’t the sun burn hotter; who wants to live in a world like that anyway?
Cancer becomes an unwanted ghoul that rides on your back when you’re apparently clear of it. It has altered everything about me: my physical body has scars, my fingers and toes frequently seize up from cramp out of nowhere, my own mind haunts my every thought. During the results of my last scan at The Christie, the oncologist told me that some of the lymph nodes in the area where the tumour was located are dilated. He said they were not dilated to a point that they are considered a risk, but that we need to keep an eye on them. Ever since hearing those words, I’ve become an expert in lymphoma despite knowing absolutely nothing about it and trying to avoid Googling it at all costs. I’m constantly feeling my neck, cautious that it hurts and worried that I am developing lumps there; I vaguely know that lymphoma can show signs in the neck, so my mind ensures that I have a steady stream of anxiety about it, which seems to manifest as actual pain in my neck. It isn’t all in my mind, I really do feel things around my neck that I never used to, but I don’t know if it is just tension, or me perpetuating my own narrative. Even my chin bone has started to hurt and in one particular spot, I get a sharp pain when I turn my head in a certain way. I don’t understand any of it. It terrifies me.
I get similar feelings around my armpits, but it isn’t as pronounced as the neck pain. Sometimes, I think there’s a lump there too. For some reason, I find it easier to depart from these anxieties, though. Probably because I remember that I have a neck still, then I remember that I’m an expert in lymphoma, and I know that it always undoubtedly shows itself as a pain in the neck, and I remember that I also have a pain in my neck, so I determine that I have lymphoma. Lymphoma of the neck. 1 week to live. I sit in bed until 2:00am and don’t sleep a wink. What will I do with my last days? Fail at writing a book… I’m good at that. On top of this, there is the aforementioned absentness that I feel towards the world around me. I manage to feign interest for a while, and sometimes I actually am interested, but it inevitably gives way to the more difficult thoughts.
I’m working again, which actually brings a lot of relief. It is nice to travel into the office, which I do twice a week. I’ve been reading a lot more, and the journey ensures that I do at least an hour and a half of it on those days. Work gives me a reason to be interacting with people too. We’re talking about this project or that issue, and there is structure to it. It feels useful. My neck stops hurting so much because I’m focused. But then I return home and I feel like I’m a drag around my wife, then I look at my dog Lucy and get worried that she will think that I abandoned her if I did die, and I won’t be able to tell her that I didn’t. Nothing can just be good; I manage to take good things, process them through my negativity-lense, then beam them back in a shade of strident bleak. It pisses me off beyond all measure, and then I get angry at myself for doing it. The spiral continues.
It just feels so inescapable with pancreatic cancer. I have to remind myself that I actually know people who are 2, 3, even 10+ years clear of having the cancer; that it is possible to get there. I just can’t convince myself that it will happen to me. I feel like I’m a sitting duck, waiting for the symptom that turns into the cancer that will kill me. I don’t even have a pancreas anymore. I don’t know what the possibilities are in terms of things that can go wrong, but I’ve read enough stories of people having reoccurrences, of people being 2 years clear and then dying anyway, so I’m already convinced of the outcome.
It’s always been a problem of mine – I’ve obsessed over death in a way that I’m sure many people do, but I’ve felt vindicated beause I’ve then been diagnosed with a deadly cancer at a young age. I remember sitting in the hospital bed after being told of the seriousness of the cancer and thinking to myself “I knew this was going to happen. I always knew it. I didn’t know what it would be, but I knew something would happen.” It is hard to kick that feeling now. But, something else has happened which may be spurring these feelings on.
Recently, another good friend of mine has been diagnosed with cancer. He is even younger than I was when I was diagnosed. Luckily, all the signs are pointing in the right direction. There doesn’t seem to be any spread, and they believe that they have caught it very early, though they can’t confirm this until they have removed the tumour in surgery and done a biopsy on it. I don’t want to say what the cancer is, and I don’t want to give too much information on the story, as it isn’t my place to say, but he is dealing with it incredibly well.
Hearing him talk about the diagnosis – how he felt like it was going to be bad news when he got a call from the hospital saying that he needed to go in for an appointment sooner than planned, how he saw the nurse point him out in the waiting room, how he was the youngest there by a number of decades, not years – felt very familiar. It felt weirdly nice to speak to someone close to me about the disorientation you feel in those meetings – how you’re told not to worry, but are then given a leaflet on dealing with cancer, and are assigned a clinical nurse specialist who will “assist you through the coming weeks and months”. Suddenly, you aren’t a thriving 20-something, you’re a cancer patient. It’s hard to adjust to, but I know he’ll be ok. I sincerely hope that I am too, despite all this talk of death and nihilism.
I was recently the best man at my best friend’s wedding. It was an amazing day, and they put their heart and soul into organising the event. As is tradition, I had to write a speech. Going through the process reminded me how much I enjoyed writing. Finding solutons to awkwardly worded sentences, trying to convey an emotion in the right words – it is a complex riddle that I always enjoy engaging in. It convinced me that I should write again, so, today I wrote for an hour on my book, before deciding that I am going to come on here and throw as much negative bullshit at the wall as I can. I wanted my first post in a while to be positive and jovial, but then I wrote a few paragraphs for the book that I felt proud of, and decided to blow off some steam on the blog. I think it has helped.
On a more positive note, I am feeling physically much better than I was after the mop-up chemotherapy, other than the psedo-pain in my neck and armpits. My life is different and it is taking a lot of adjusting to. I’m eating better than I ever have, and I’m getting out walking a fair bit, which is nice. Despite the tone of this post, I am finding happiness here and there, but it is a battle to stay in those places. Perhaps that is just how it is post-cancer. I was so razor focused when I was actively fighting cancer, and the outcome felt so uncertain, that I found it sort of easy to be happy. I had the ultimate objective in front of me – do whatever I can, just stay alive. Once that is gone, I found myself questioning whether that is still the goal. No doctor will confidently tell me that I am definitely cancer free, and I am yet to find a medical professional who will reassure me that I am likely to survive in the long term, so I am well within my rights to feel a little nihilistic and defeatist. Just writing this post has made me feel quite a lot better, though. Now that the clocks have gone forward, at least the evenings are lighter and the temperature is getting warmer. My next scan at The Christie is next week, so I’ve got a healthy dose of scan-xiety coming up. Perhaps if the results of that are positive, I’ll spoil myself and write something nice on here. Fingers crossed.