Apparently, blog posts are like buses – you wait ages for one, and then two come at once…
I was innocently trawling around my Apple News app a few days ago when I saw a Guardian article with the headline, “Settle NHS dispute or thousands with cancer could die early, say health chiefs.” Never one to shy away from a cancer article, I marched into it and started dissecting its contents.
It only took a few paragraphs before my infamous cancer was mentioned by name – “Patients diagnosed with typically less survivable cancers such as lung, liver, brain, oesophageal, pancreatic and stomach, were particularly at risk from the disruption caused by the strikes, cancer leaders said.” It’s always good news when pancreatic cancer is involved.
As I’ve said before on this blog, I try to spend as little time reading the news as possible. I find it to be one of the most depressing things in the modern age of technology. At least when print was the main form of consuming news, there was a steady cadence to the whole thing. People could willingly pick it up when they felt like it and consume as much or as little as they liked. Now, the news throws itself at you, giving you 24/7 live updates when a big event is happening and forcing you to know who won what at The Golden Globes by sending you headlines every 15 minutes. Of course, it is possible to turn notifications off, but who does that, really? Especially with the news… It taps into that urge we have to stare at a car crash as we drive past it or run towards a fire when we see smoke billowing into the sky. The news is real and exciting, it just happens to also be awful, depressing and plagued with bias.
I still scan the news when I’m idling to see what the headlines say, occasionally opening them when they seem relevant (or stupid) enough to be of interest. This one seemed particularly relevant to me, so it made the cut. Reading about operations being delayed reminded me of the period when I was waiting for critical surgery.
My operation was delayed at the last minute. The surgeon randomly called me the day before my surgery date and told me that he had bad news. My heart skipped a beat, but the situation wasn’t as bad as it sounded. He apologised and told me the procedure would need to be delayed until the next Friday. They did not have the needles required to perform the Nano-knife procedure. Without these needles, there isn’t really a procedure to speak about, as the needles are what they use to send electric currents into the tumour in an attempt to kill the cells. It would be like trying to serve steak tartare with no steak. In this scenario, I guess I was the steak, and the surgeon had to wait another week to tuck into me. It must have been hard for him, poor guy. We were in surgery for 14 odd hours, so he probably needed a steak or 6 by the end of that. Unless surgery puts you off such things… Anyway.
Upon hearing the news of my operation being delayed, my initial response was relief. After the relief came the anxiety.
He hadn’t called me to inform me that actually, in fact, I didn’t have cancer and I was fine… That would have been a truly relieving call. He had called me to tell me that something had gone wrong and that I’d have to wait another week to potentially curtail the cancer, which he himself had informed me was extremely deadly and fast-moving. It isn’t a nice feeling, especially when you just want the damn thing out of you.
Knowing there is a tumour inside of you is a strange feeling. I spoke to my friend George about this as he also had cancer at a young age, which required surgery. At random times of the day, I’d wonder if, at that exact moment, the tumour was developing in some way or whether other tumours were forming in distant parts of my body, unbeknownst to me. Whenever I read about people with brain tumours, I wonder how it must feel to have that sensation when you know it is in the very place where those thoughts are being generated. The whole thing is discombobulating. I’d recommend staying away from thoughts like these, especially if you have cancer. It is hard to not think of them, though. Or that was my experience.
During that additional week when I was waiting for surgery, I frequently thought about whether I should have been angry, but I never actually felt angry. That should have been my answer. One of my siblings suggested that the delay might have just been an excuse and that something else may have gone wrong, which meant that they needed to move it at the last minute. I wasn’t so sceptical. To me, it was all fine. The procedure was still happening and had been organised only 2 weeks before the original planned date. It was all very quick and didn’t cost me a penny, despite it turning into a 15-hour procedure involving an entire squadron of medical professionals.
I’ll never forget what the anaesthetist said to me at my preparation meeting before the surgery – “We won’t skimp on the drugs that day, don’t worry!” She probably makes that joke to everyone, but I like to think that she kept it for me. We giggled together, and I imagine she then looked at my abdomen and pictured it clamped open, a picture I don’t imagine is too difficult for her to conjure up, given her profession. I’ve got a video of the procedure, so it isn’t too difficult for me to picture it now. It’s pretty gross, as you can imagine.
Would I feel annoyed if my operation was delayed because of a doctor’s strike? I’d like to think not. Those moments where you feel vulnerable, such as when waiting for an operation, knowing you have a tumour inside you which exists solely to consume your body, can change your feelings towards such things. I’m sure for the thousands of patients who have had critical care delayed because of the strikes, it is difficult to agree that it is acceptable. Yet, the entire medical system relies on doctors, and it is in the general public’s favour to incentivise smart individuals into the field. They are the ones who push it forward, after all.
Doctors are a special type of person, in my opinion. There seems to be a refined personality type which is drawn towards the profession. They are almost always incredibly calm, thoughtful, level-headed individuals with a curious spark and a genuine desire to help others. I have never met a doctor and thought, “This person seems like a self-aggrandising piece of shit who is only in it for the money.” So, if junior doctors collectively say they are not paid enough, I am inclined to believe them.
That may not make it any easier for the patients who experience delays because of the strikes, though. I have a lot of sympathy for those who have had critical procedures delayed, just as I am sure the doctors do. They’re the ones who help people – not us armchair critics who cast a judging eye over them and shake our heads while we read the headlines. It is them who work long hours and through the night, who try to help drunken, disorderly people who view them as the enemy in their intoxicated haze (I’ve seen this happen in A&E at least 3 times), and it is them who stare death and despair in the face every day, but have to push through it because there is another patient waiting. It really is a gruelling profession. They deserve to be paid properly.
In my less survivable cancer clique, we’re probably used to reading depressing things about our cancers. To me, reading about how these strikes will disproportionately impact those with less survivable cancers just felt like another familiar jab in the side. It’s all water off a duck’s back, eventually. The stats are plastered all over the websites of all of the charities. All it takes is a few meetings with a specialist, and you get a feel for how bad it is based on how slowly they talk to you and how many softening words they use – “…this is a really difficult cancer,” and “…you’re very unlucky to be experiencing this at your age.” The statements are probably true, but you feel a little undersold. A little like referring to a nuclear bomb as a “lively” firework. They’re empathetic people delivering life-altering news. What else are they supposed to do? But that can’t be easy to swallow if you have a chance at a life-changing surgery, and it is being pushed back by a week because of strikes.
So, I tend to agree with the sentiment of the article. We probably should just agree to pay them what they need. I don’t think junior doctors are a greedy, unreasonable subsection of society. MPs find the money to throw at PPE equipment when society needs it (especially when their friends own the company offering to produce it), so why can’t they find the money to pay the doctors a fairer wage? These same doctors frequent the wards at St Thomas’ Hospital, located across the river from The Houses of Parliament, a bastion of power; both stood in a Mexican standoff, destined to never relent.
It didn’t feel like it had been so long since I last wrote a blog post, then I checked and saw that it was in July. In my defence, it was at the END of July, but it was still a while ago. I guess some of that feeling comes from the fact that I know I’ve written things for the blog in the meantime, but I haven’t liked any of them enough to post, or the idea hasn’t developed enough to feel that the post was complete. My drafts folder is looking more bulked up than ever, boasting an impressive 16 posts which now live in there, untouched by the human eye and unlikely to ever be pondered over by anyone other than myself.
Occasionally, I humour them by opening a few of the draft posts and seeing what I thought it was worth writing about that day. I giggle to myself as I read the words, sometimes finding a sentence that I actually like or think is well written, but mostly just guarding myself from the feeling that I should have really committed a little more time to each of them, and allowed them to flourish into something worth reading. It is difficult to see them as anything but a snapshot of a feeling I had at a time that isn’t now, which I sometimes struggle to associate with. That is why I mostly write them off as nonsense, but I’m sure they could be valuable in the future. They’re usually based on an Ok idea, I just get bored somewhere in the writing process and decide that what I’m saying isn’t interesting enough to share, or comes across too strongly when I look at it the next day with a fresh pair of eyes. Who is to be the judge of that, though, if I leave them derelict in the draft foder? Clearly no one reading this blog as you’ll never get the opportunity to read any of them. It is only my own ego which sits in judgement as I read back through them, finding it too try-hard or too emotional to acknowledge them as anything valuable. Some of them are just boring, though.
I’m glad to report that there isn’t much to report, which is the best kind of report to receive when you’re trying to survive cancer. Bastard fucking cancer with its hard ‘K’ sounds. KAN–SER. It sounds a little like the words “Can” and “sir” when you overemphasise its pronunciation like that. It makes me think of the classic line from Oliver Twist – “Please Sir, I want some more,” – which then seems totally out of place in this context, as I don’t think anyone would be begging Sir Can for some more if he was dishing up what he served me. I’d actually like a refund, if possible – 1 pancreas, 3/5s of my large bowel (I still find this a very unusual amount of bowel to report to have taken – wouldn’t you just say half to make things easier for everyone?!), 1 bile duct, 1 gall bladder etc etc. I’m not actually going to reel off a shopping list of the internal organs I lost in the operation; especially as it all resulted in 1 tumour also being removed, which does justify all the other stuff that went missing. Still, the list of things taken is eye-watering. Speaking of the tumour, I had some scan results a few months ago…
In one of my last posts before falling off the face of the internet, I said that I’d been to The Christie for a scan. The results of that scan took a few weeks to get back to me. No follow-up appointment was scheduled, and then when I received a letter informing me that it was booked, the date of the appointment read ‘November’. Usually, the team strive to give you your results about 7 days after the scan takes place, so this seemed fairly irregular, to say the least… I’d had the scan in July, after receiving a call from The Christie to request that I go in early, as they were very busy over the next couple of weeks. It is because of this conversation that I didn’t feel very alarmed that no follow-up appointment had been booked yet, but upon learning it had been booked for November, I did grow a little concerned at the lack of alertness. I played some mental gymnastics with myself – the conclusion I drew was that they had clearly reviewed the results, seen nothing to worry about, and put me to the bottom of the priority queue, where I was happy to be. There was a niggling feeling that I was expecting too much of the overstretched NHS, and that they hadn’t looked at the results, and wouldn’t until my appointment was due. I was wrestling between those 2 opposing theories.
Over the next few weeks, my mum would regularly bring up that I must contact The Christie and ask them whether the appointment was correct, or if it was a mistake. I was pretty confident it was a mistake, but I was also pretty confident that I wasn’t in a hurry to get the results. I’ve spoken before about how getting the results of a scan can feel like the critical point, as if receiving the results are the point in time where the problems begin. The problems beginning are obviously, in reality, when the damn problems arise physiologically in the body i.e. when your body gets bored of being cancerless and accepts another invite to the tumour’s cancer party – a ruse you really hope your body won’t fall for again, but one which you know you need to keep an eye on, as your body is a guilable bastard. The scan only alludes to whether there are any problems, and allows one to start addressing those problems (by ‘one’ I actually mean ‘the oncology team’ – all ‘one’ does is sit there absently through the whole affair and feel upset a lot). Still – it takes some mental effort to pick up the phone and explain the situation, effectively rerouting the collision course of your life back to the hospital, as opposed to anywhere-else-in-the-whole-world, which is much preferable. I think it took me about a fortnight before thinking that I was being very stupid by not making the call.
So I did it. I got through to the switchboard and asked for the scheduling department. The scheduling department told me that they would get in touch with the HPB team as their department does not organise any follow-up appointments, and only scheduled chemotherapy appointments. She told me that she would ask the team whether the appointment had been incorrectly scheduled and get back to me. The operator agreed that it seemed irregular to receive a follow-up meeting so far in the future once having a scan done, which was encouraging to hear. But my theory about the results definitely being good was out of the window, so that didn’t feel so encouraging.
Despite knowing all of this made logical sense, and fully assuming that the meeting would be moved forward, I was stunned when I received a phone call back about 30 minutes later from the same scheduler who askied me if I could attend the hospital the following Thursday. All of a sudden, I was a nervous wreck who wanted this random scheduler to console me in ways that I knew she was not able to.
“Do they think something is wrong? Why have they decided to prioritise me?” I asked, trying to mask my nervousness, but doing a very poor job of it.
“I’m not sure, Sir. They just said that they need to give you the feedback from your scan. Try not to worry about it. Can you make the appointment?”
I agreed that I could make the appointment, then babbled on a little bit more about this and that and cancer and reoccurrence and tumours and diabetes and blah blah blah. She was getting a live blog post – lucky her!
At some point the call ended and I felt regretful for pursuing the issue. Before, I was just a guy with an appointment at a hospital in November. November was 3 whole months away – 3 months!! 3 more months of being cancer-free! But I’d decided to schedule my diagnosis to be earlier. What an idiot. Who does that? I then felt weird reflecting on how I had reacted upon learning that I had an earlier appointment, especially as this was the exact result I had expected, and that knowledge is what had driven me to make contact in the first place. It didn’t make sense to have a scan in July and results in November – a lot can happen in that timeframe which would make the results irrelevant, so of course it was going to be brought forward. Still, the doom clock struck 0 and I reacted the way that I did. It is what it is. I’m sure it is rational in its own irrational way. Two amazing things happened at the hospital on the day I got my scan results.
Amazing Thing No 1
The first of those things happened as I sat there, waiting for the electronic appointment screens to summon me into a room. Me and my wife were in the usual mood that the hospital brings upon us – one characterised by quiet concern and looming doom. We speak little and do our own thing, mostly…
“Excuse me – are you Dan Godley?” The voice came from behind my chair. I turned around to see a woman standing in front of me with a neat smile painted across her face. I confirmed that I was indeed Dan Godley, and she proceeded to tell me that she was a reader of the blog.
We spoke at length about her diagnosis, stage 1 pancreatic cancer, and the difficulties of dealing with it all. There’s something magical about this blog – people who read it know a lot about me, probably more than I realise, yet I know very little or nothing about them. I often forget that I’ve written about something until I go to tell someone about it and I find that they finish my sentences for me, or ask a leading question which preempts the next part of the story. It happens a lot with my friends and I always feel a little silly, as if I’ve personally told them those things 5 minutes ago but then forgotten.
The fact that people know so much about me seems to disarm them of the normal filters which they may place around their emotions, and I find people speaking very frankly to me. This conversation felt a lot like that, with us sharing intimate details of the lows, the inescapable panic which comes and goes, the fear of receiving scan results and the difficulty in getting through chemotherapy, especially on the harder days. It was really lovely, and 20 minutes flew by in a flash – something which doesn’t always happen when you’re waiting for scan results.
Something she said really stuck with me… She was worried to see me at the hospital after not seeing any blog posts for a few weeks, thinking that I may have had bad news. It made me worry about the community on here and what they must think given the silence. I felt very motivated to write something that evening, but I didn’t find the time. That excuse starts to lose water when I consider that I got my results in mid-August and it is now nearly October. But I’m writing now. That’s better than nothing, right? This leads me onto the other amazing thing that happened at the hospital that day…
Amazing Thing No 2
Even for The Christie we were waiting a long time that day. I wasn’t called into the room until 2.5 hours after my scheduled time. It was about 17:15 when I was finally sitting in the consultation room, waiting for the oncologist. This part of the process always takes at least another 30 minutes, and it is the most nervy part of the day. Anna and I usually sit in heavy silence, listening to our heartbeats increase every time someone traverses the coridoor past the open doorway of the consultation room. The only thing which breaks the silence is the sound of the oncologist’s footsteps as he enters, solemnly smiling and closing the door.
Around this time there was a general shortage of Creon, which is the supplement that I have to take to allow my body to digest fats and other nutrients. Without it, my body cannot absorb a lot of the key nutrients from food, so it is critically important to me. Despite it being so important to my health, I cannot get enough of it to build up a stock as the pharmacy will only prescribe me enough for the next month, and the GP won’t sign off an allocation of more than this amount. That means that when I put in a prescription request for the next month, have it approved by the GP, then go to the pharmacy to try and pick it up, it is critically important that they have it. The problem is that they don’t always have it. I show up at the pharmacy only to be told that there is an issue obtaining it, and I have no backup plan as I haven’t been able to build up a store.
What I do know is that specialist centres get priority of specific medication, and The Christie always has a bulking supply of Creon. They had written an emergency prescription for me that day, but I had to wait for a GP to sign it off before I could pick it up. The pharmacy closed at 18:00, so upon being called into the room, the nurse encouraged Anna to go and pick up the medication shortly or we’d miss them. We waited for a while in the room, but it got to about 17:40 and there was still no sign of the oncologist, so I told Anna to go and get the prescription before it closed.
Obviously, about 2 minutes after she left, the oncologist walked in, armed with a smile, which could mean anything from “It’s good news,” to “try and stay calm, but I regret to inform you that you’re totally fucked.” I am pleased to report that it was the former and not the latter!
Not only were there no signs of a tumour still, but the enlarged lymph nodes which had been concerning the medical team in the previous 2 scans had returned to a normal size and were no longer visible on the scan. It was a huge relief. I don’t know how many times I need to receive good news before I stop presuming that everything is going to go wrong all of the time. Maybe that’s just how I’ll always feel about things now. I find it easier to enter these situations with my walls raised high and scepticism flowing freely so if it is bad news, I am somewhat expecting it. The problem with that scepticism is that it doesn’t only exist when attending scan results. It becomes a cancer in its own right that permeates through the rest of life.
None of what I am about to say here is new, but I’m going to repeat it anyway… Although I would describe myself as a fairly positive and enthusiastic person, I feel like I struggle to engage with the world in the same way that I used to. My ability to feel positive emotions has been blunted, and I’ve found a strange ether that I exist in, still feeling more certain than not that cancer will kill me, but not having quite the same ability to process that feeling in a healthy way. When I was on chemotherapy, I dealt with it all fairly well. It didn’t matter whether I had a week, month or year left – my focus was on being happy. It still is my focus, but executing it is a difficult feat. The looming shadow which cancer casts over your life – one which impacts your relationships, many aspects of your lifestyle, and a host of other things – is hard to escape from. Trying to make sense of all of that, as if it is normal, is difficult.
All of this sounds more melodramatic than I mean it to be. I’m not suggesting I am never happy or that I am unable to enjoy life with a positive perspective at all. I manage those things, but they are more difficult to achieve, and almost impossible to sustain. I’m sure that was true of my life before too, even if I can’t specifically remember it now. I am aware that the difference between ‘People who are happy’ and ‘People who are unhappy’ is not a straight split between those who have not had cancer and those who have, although I suspect those who have do find themselves being a little more unhappy – it would be worrying if they weren’t. The grass is always greener, and it is useful to remind yourself of that fact.
In many ways, that difficulty dealing with the reality of life now stems from a return to a more normal set of circumstances. I’m back to committing myself to work properly, hanging out with friends and nurturing my hobbies (I am cooking and baking for at least 2 hours a day at the moment, which is a little excessive). It’s a welcome set of circumstances to be, and I remind myself that I am grateful to be where I am every day. Knowing that I am grateful doesn’t erase all of the other feelings, though, so I still have to deal with them.
Yet under these circumstances, I still have a very good life. The summer was wonderful this year. I used to prefer winter because the long evenings felt comforting to me, but this year I found myself really enjoying the long hours of daylight. The transition back to darkness at 20:00 is a little disheartening, but I feel ever more confident that I’ll still be around to experience the longer days again next year. That feeling of hope is nice, and I try to dwell on that more than the negative feelings. Despite the bad dreams, the sleepless nights and the strange pains I get in my abdomen, my quality of life has reached a level I doubted it ever could again. I like to go walking, to eat varied food and even find myself enjoying baking, and enjoying the spoils of it. My new thing is trying to make perfect croissants – I’ve had 2 attempts so far, and the second ones were far more convincing than the first.
Croissants Attempt 2
I think the most productive mindset any individual can have is to just have goals in your mind and stay motivated. I don’t mean far reaching, difficult goals. I’m talking “find a nice lemon cake recipe and make it after work,” and “walk my dog for an hour today.” It doesn’t feel like a lot, but it keeps things ticking. I got through chemotherapy using that method, and I’m still alive today, so it must be worth something.
Another Cancer Story…
Finally, I’d like to give a big shout out to my friend George. He was diagnosed with testicular cancer this year at the young age of 27 (he beat me by 2 years – that bastard; I can’t say I’m the youngest to be diagnosed in our friendship group now). This is the same guy that weeks before his diagnosis had sent a video of him to me where he was dancing to Mr Brightside by The Killers, only to replace the lyric ‘It was only a kiss’ with ‘It was only a cyst’, referencing my original diagnosis – a cyst on my pancreas – which ended up actually being a big ole tumour. The video still makes me laugh a lot every time I watch it, despite the events which occurred just a few weeks after this took place. Unfortunatly for him, he was also told it could just be a cyst, but was then told that it was cancer.
Luckily, his treatment was straightforward – if having a testicle removed can be considered straightforward. The surgery went well, and he did not even require chemotherapy (HAH – I definitely win on the severity of diagnosis and treatment, so it’s 1 all). He was also treated at The Christie, the hospital where I have received all of my treatment.
To show his appreciation to the hospital, he cycled from the village we grew up in, to my flat in London, AND BACK AGAIN, all in 1 weekend – this weekend! It is just under 200 miles EACH WAY. Absolute psychopath.
For his efforts, he raised over £2000 for The Christie, and earnt the respect of everyone who knows him (and probably many that don’t). It is a phenomenal achievement, and we’re all so proud of him. Please enjoy the video of him arriving at the flat on Saturday night below!
George Arrives in London!
Thanks for sticking with me, and I hope all of the readers of this blog are doing well! I’ll try and not leave it so long before the next post but if I do, know it’s. forthe best reason – if ANYTHING goes wrong from a health perspective, I’ll be straight on here to complain about it! I’m going to sign off with another picture of Lucy, because I have them all over my phone and I feel a burning desire to share them with anyone I can.
I wondered why my statistics showed an unusual spike over the weekend, despite not posting anything until Sunday night. Then I realised that my episode of the Project Purple podcast was released on Friday and that my blog URL is featured on the website, so I deduced that this may have something to do with it. Either that or all of the rain that we’ve been getting in England has been forcing people to sit inside reading cancer blogs rather than enjoying themselves; both are totally plausible explanations. Perhaps it was a combination? Anyway, here is the episode, if you are interested in LISTENING to me moan about cancer for once, as opposed to just reading it. There’s even a video, which is a little terrifying.
I’m even on Spotify now, which means I have fulfilled a lifelong ambition to be an artiste with content on the platform (in my mind, it was going to be an intricately written song which everyone praised as being emotionally deep whilst beautifully composed, but featuring on a podcast about cancer was second on the list). I’ll link both below.
L’appel du Vide is a French phrase which translates to ‘The Call of the Void’. It refers to the tendency we have to entertain self-destructive thoughts, like wanting to jump off a cliff when standing on its face. The phrase doesn’t refer to the act of doing so, but the way that we are inclined to think about doing so when facing such a situation. Another example is the thought of ploughing your car through the barriers at the side of a bridge when driving over it. I frequently experience it when I am waiting for my train to travel into the office in the morning.
The train station has 4 tracks running through it. The outer ones stop at the platforms on either side but the inner ones are for the mainline trains which go between London Bridge and Brighton. I usually get to the station at about 07:03 for my train scheduled at 07:09. Whilst waiting for it, I always see one of the mainline trains fly through on one of the inner rails. There are no barriers sectioning it off.
Sometimes, as I stand there in my morning daze, I think about what everyone would do if I just took a running jump in front of the fast train as it flies through the station. It isn’t because I want to do it, there’s just a fascination with the idea. I wonder what other people on the platform would do, how easy it would be to execute the jump and whether I’d feel anything at all, or whether the rush of adrenaline would be the last thing I ever experience. I wonder if the ‘l’appel du vide’ phenomenon is somewhat related to the negative feelings I get around scan dates…
On Wednesday, I felt my phone ringing in my pocket whilst at work. Upon looking at the screen, I saw the dreaded ‘No Caller ID’, which is almost always the hospital. The woman on the phone told me that she was from The Christie’s imaging department and that they needed to book me in for a scan. Due to it being very busy over the next few weeks, she asked if I was able to attend on Sunday of this week. I was a little flustered but I agreed, always giving precedence to any cancer-centric plans over any non-cancer-centric plans, even if they are last minute. In the hierarchy of needs, cancer care trumps most other things, perhaps even eating. Once you have been admitted to the hospital a few times, you start to realise that not eating is actually encouraged by the medical field in a lot of cases. ‘Null by mouth’ they call it, and it absolutely sucks. It gets written on a little whiteboard next to your bed so you can’t even lie to the person going around the ward offering out hot drinks. You get to watch everyone in the other beds enjoy their morning coffee and toast whilst you aren’t even allowed a cup of water. It’s torturous, but I’ve normally been jacked up on morphine at the time, so I’ve gotten over it.
Once I had agreed to the short-notice appointment, I went about reorganising my diary to fit it in. I realised that I had plans for Saturday that needed to be rearranged, and then realised that there were train strikes on, meaning that I couldn’t get back to my parents for the scan via train. That meant factoring in the 5-hour drive from London too… not too bad but not ideal… Eventually, I managed to figure things out well enough, and it sort of fit into place… well, things were forced into place, but whatever, I had a plan to see my friend earlier on Saturday, then drive home that afternoon ready for the scan today.
At the start of the week, I already had a few symptoms that I was worried about. From one perspective, having a surprise scan flung on me felt helpful, as it would allow me to address any worries I have that these symptoms are alluding to another tumour growing inside my abdomen. On the other hand, it could confirm these worries to be valid, and by confirming them, it also makes them real. Once they’re real, I’m back in the world of dealing with an active cancer again, if dealing with it is even possible anymore. Dealing with it might mean “making peace” with it, to use a euphemism, which isn’t something I want to have to do, if I can avoid it.
The cognitive dissonance at play here is obvious – just because an oncologist hasn’t identified a tumour in your body yet doesn’t mean that it isn’t growing inside of you. Not having a scan doesn’t mean you don’t have cancer. It would be great if that was how the world worked, but it doesn’t. In actual fact, if you have a cancerous tumour, it really is in your interest to have it identified, preferably by someone who dedicates their life to trying to cure people of that type of issue. Still, when it is officially identified is when you officially have to deal with it, which sucks. Notice how foreboding I am being here? Welcome to my head… please don’t slam the door on your way out. Thanks.
The recent symptoms have been more of the same really, but they’ve got more intense. I’ve started to get the exact same tightness in my abdomen that I was originally trying to get diagnosed when I first realised that something was wrong with my body. It’s especially bad in the mornings which was also a key characteristic of it before. This isn’t the first time that I’ve had this problem since I was first diagnosed, and I even asked the surgeon about it after my operation as I was experiencing it a lot then. He reassured me that whereas before I had problems because of a tumour, now I will have them because of the trauma from major surgery, and that they may never go away.
Although this should bring me some comfort, this symptom mostly went away for half a year. Now it’s back and feeling worse than it has since it originally surfaced, which is disconcerting. No matter how many times I remind myself of what the surgeon said, it doesn’t fully satisfy me. If my experience over the past few years has taught me anything, it is that we know our own bodies better than anyone. Why is this feeling resurfacing now, if nothing has caused it? I’m sure there are other things that could be causing it, but I’m also pretty sure that it could be a tumour, so I can really go round and round in circles with myself on the topic forever. And believe me, I do. Round and round and round and round and round. The only positive is that it makes getting out of bed in the morning very easy, as the pain seems to lessen when I get up. If I stay in bed, I just worry about it, then worry about everything else, and then feel terrified that I’m going to die. I’d rather drink coffee on the sofa than contemplate how painful my inevitable death from cancer will be.
Then there is this random stabbing pain that I’ve started getting in the left side of my abdomen… Guess what else was in the left side of my abdomen? My pancreas! What was on my pancreas? My big fat Greekwedding pancreatic tumour! It’s hard to shake it off, especially when the oncologist told me that the most likely place the cancer will return is on the lymph nodes in the area around where the tumour was. Of course, that doesn’t mean that it would feel like a stabbing pain in that area, and I spent a few months after I got the all-clear worrying that my neck was swollen, only to find out that this wouldn’t be a symptom of my type of cancer returning, which made me feel nice and stupid. When I say I was worrying about it, I was seriously worrying about it. I kept getting paranoid that my neck hurt, which it probably did, but more from me tensing it due to me worrying about it all of the time. This should serve as proof that I have no idea what I’m talking about, need to stop generalising that everything means I have cancer again, and should just get on with my life and be grateful that I’m in this situation at all. It isn’t so easy, though. There’s also the issue of occasionally shitting an alarming amount of blood, but that’s totally fine, right? Yeah, I’m sure that’s totally normal. Cool. Anyway.
L’appel du vide really summarises my feelings towards my cancer at the minute. I feel like I am being pulled into a void. When I hadn’t had a successful operation and things weren’t looking good for me, I feel like I had some extra level that I could go to which comforted me. There was an element of knowing that I might not have too long left and that I need to do all I can to enjoy it which felt empowering. Those feelings of helplessness don’t just dissipate overnight because treatment went better for me than anyone was expecting it to. Instead, those feelings seem to float about in the ether, binding to any insecurities I feel and infinitely multiplying them. I’m still not in a position where I believe that things are actually going to end well for me, I’m just waiting for them to go wrong. The fact that I can’t put a timeline on when that will happen anymore just makes it all the more daunting.
Now that I’ve had another scan today, the same thing is happening. I’m certain that they’ll come back and it’ll be bad news. But even if that doesn’t happen and they’re all clear again, I feel like I’ll just be letting out a sigh of relief that I’ve got away for another few months before the next scan, where THEN they’ll surely be negative. I even started entertaining the thought that even if the scan is clear, it must be because the tumour hasn’t grown enough to be picked up by it yet. Then I am convinced that WHEN it comes back, I’ll be dead in a matter of weeks; all I have backing that up are a few stories I’ve read on the internet, but every cancer case is notoriously different. I’m an expert at being an inexplicable expert on cancer, apparently, considering I know nothing about it whatsoever, other than the experiences I’ve been through.
I need to just stop thinking about it so much, but it’s impossible to do. Stopping yourself from thinking about it is almost more difficult than just letting the thoughts come when they need to, and doing what you can to deal with them. It is so easy to read about someone dying from cancer, seeing that they fought it for a year, 2 years, 5 years etc, but that doesn’t do any justice to what they went through. Every minute of every day it is there, whether it is an explicit symptom that they’re suffering with or just the knowledge that they have cancer. Every. Fucking. Minute. How do you counter that?
I had a dream that I was locked in a room, and all I could hear was this incredibly loud screaming, but I couldn’t stop it or get away from it. I woke up and my blood sugar was 18.9, which is insanely high, and I had a horrible pain in my stomach. It all felt relentless, and then I spent an hour wondering what would even kill me if I died of pancreatic cancer. Would I stop eating? Would my body just give up? They’re all questions I don’t want to answer, but I find myself falling into the details of them anyway. Perhaps it is necessary to feel these things and navigate these thoughts if that is what is going on in my life, but it can all feel so counterproductive and unhelpful.
So, the scan was fine but I don’t know when I’ll get the results as I haven’t received an appointment yet. I’m sure in the meantime I’ll find ways to perpetuate the symptoms and reassure myself that everything means I have cancer again, yet also feel disproportionately invincible on the days when I do feel good. Whether it is the l’appel du vide phenomenon or not, it is nice to read about something that I have thought about a lot in life. Cancer is, after all, a huge void, mercilessly dragging millions of people into it every year and decimating their lives. Whether standing on a real cliff or a metaphorical one in the form of cancer, it is difficult to not entertain thoughts of falling over the edge. In those thoughts, there probably is some relief, and I know that writing this has provided me with some catharsis, but I wonder how others deal with this. Some people just have an unrelenting positivity about life – what a gift that must be!
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.
One of my favourite writers is George Orwell. For years, I only really knew of his novel 1984 and the novella Animal Farm, and I wasn’t too fussed about either. It was only when I Googled for pieces of work similar to Bukowski’s book ‘Ham on Rye’ that I found out that Orwell also wrote a few non-fictional pieces. The best rated of these was ‘Down and Out in Paris and London’, a book written about Orwell’s time spent living in extreme poverty in Paris and London. He painted such a vivid picture of the exceptionally poor conditions these people lived in; his writing exuded empathy for their struggle, and you could always sense his appreciation for them in the way he wrote. The novel presents a cast of characters, very few of which have anything to be positive about in life. They are all living day to day, barely making enough money to put a roof over their heads, and frequently having to eat nothing at all, or settling for stale bread which they managed to negotiate the price of at the end of the selling day. I read the whole novel in a single day, and couldn’t stop thinking about it for weeks. Despite this being a favourite book of mine, I never got around to reading another one of his non-fictional pieces titled ‘The Road to Wigan Pier’, which has been on my radar for years.
A few days ago, as I sat absently watching TV, my phone vibrated in my pocket. I unlocked it to see that Audible had charged my account for a new token. If you aren’t aware of how Audible works, you essentially pay a monthly subscription fee which gives you a single token each month, which can be used to purchase any audiobook you like. If you wish to buy a book without a token, they are usually significantly more expensive. The scheme essentially encourages you to purchase a single item a month using your token, and then spend that month listening to it. These tokens build if you do not use them, and I had banked up a total of 6 during my time receiving treatment for cancer, as I had stopped using the service entirely. It would have actually been a great time for me to use it far more, but I used to listen to things primarily when walking around London, and I hadn’t been doing a lot of that over the past year, so the habit was broken, and it didn’t seem to be coming back. I’d subsequently decided to pause my account, so I wasn’t amassing enough tokens to purchase the entirety of Stephen King’s back catalogue.
Audible encouraged me to pause it for a set amount of time, though, as opposed to cancelling it, as that would lose me my tokens, and that set time had clearly come to an end. I decided it was time to start using some of those tokens, and I immediately purchased ‘The Road to Wigan Pier’. I may as well tick it off my incredibly dull bucket list… Some people want to skydive or visit one of the great wonders of the world, I want to sit in my bed and listen to someone reading back to me the depressing conditions that coal workers resided in during wartime Britain. Each to their own, I guess.
A few nights ago, I couldn’t sleep. It was about 3:30am; my abdomen was hurting, and I was concerned that something was going wrong with my cancer. At this point, I could stub my toe and 5 minutes later worry that my toe hurting may be linked to the cancer spreading. Can you get cancer in the toe? Probably not… If you can’t, I’ll likely be patient zero of the toe cancer world.
Laying in bed, I decided to cheer myself up by listening to ‘The Road to Wigan Pier’. The first few chapters are dominated by Orwell describing the brutal conditions of the coal mines. I sat with my headphones in, looking out of a small gap in the curtains. Through the break, I could directly see a streetlight on the road outside of my parent’s house. Rain was pouring down. I tried to follow single droplets as they made their way down the window pane, but they were quickly lost in the onslaught. Orwell was describing how coal workers have to walk anywhere from 1 to 5 miles underground to get to the coal face. The temperature in the shaft is unbearable, and the miners have to traverse a complex network, most of which they can barely even crouch in due to the size of the opening. That entire journey doesn’t even count towards their working hours for the day, and once they reach the coal face, they spend 7 hours on their knees, shovelling heavy coal onto a conveyer belt, before making their way back through the tight tunnel system, coal dust heavy in the air, before being pulled back up to the surface on the hoisted platform. I wondered if I had any right to complain about anything going on in my life compared to this world Orwell was painting. It may have given me some helpful perspective on my life, but it wasn’t helping me fall back to sleep. I turned it off and listened to some mindless podcast instead, which allowed me to fall back asleep in little time.
I’ve just started cycle 3, the final cycle, of the mop-up chemotherapy. Cycle 2 was a stagger – with 2 delays in treatment due to my liver functioning being too poor to proceed. The resolution to the issue seems to be the oncologists approving a new ‘permissible’ reading for the liver functioning tests, meaning that my liver can be slightly more fucked than it could before, without it triggering a delay in treatment. Although I am happy that delays are less likely to occur in cycle 3 due to this, I am sceptical.
Much of cycle 2 was spent with me feeling incredibly ill, spectacularly tired and constantly in fear of the next dose of chemotherapy tablets that I had to take that day. The dosage is 3 tablets, twice a day, and every time I have to take them, I throw them all back at once and quickly down some water to get rid of them. They almost make me choke every time; not because I struggle to physically get them down my throat, but because I can’t help but view them as evil little bastards that are going to make me feel more ill, more tired and more angry that this is really considered the best way to treat any illness in the modern world. The treatment might just save my life, though, and I do need to remind myself of that fact sometimes.
The final delay in cycle 2 meant that I would still be in the height of the chemotherapy treatment on Christmas day, whereas this was supposed to be during my week off between cycles. I was quite gutted about this, as Christmas is my favourite time of year. I wanted to feel my best around this period so I could see friends, eat too much and allow myself to decompress a little after a tough year. It wasn’t to be, though. I still managed to do most of those things, but there were a few dodgy periods.
A few days after Christmas, myself and 19 of my friends went to a local restaurant for a big meal. I’d really been looking forward to the event for weeks. We don’t all get together very often, so it felt novel and exciting. During the day, though, I’d felt very anxious and not myself. They are feelings that I am becoming better acquainted with these days, as I struggle to wrestle with the post-surgery world I inhabit. I’m constantly fighting with my volatile blood sugar levels due to having no pancreas, and the mop-up chemotherapy gives me more headaches in a single day than I have experienced in the rest of my life. They make it especially hard to get out of bed in the morning, and I frequently find myself unable to move for 2+ hours. Mornings used to be my favourite time of day; now they pass me by without barely acknowledging me.
For the first hour or so, I was quite enjoying the meal, but at some point, a trigger switched in my head without me realising. As I sat there, I looked around me at all the people I know and love, enjoying themselves, laughing, drinking and chatting away. I felt like a ghost; like there was a void around me separating me from them. I tried to shake it off and engage, but I couldn’t. All of a sudden, I felt like I was suffocating. I told the group that I wasn’t feeling too well, and that I needed to leave. After a few laboured goodbyes, I made my way out of the restaurant. The second the door closed behind me, I burst into tears. It surprised me as much as it surprised the man walking towards me on the street. He looked at me like I was crazy – he probably thought I was drunk.
I took a left turn to get off the main road and made my way back to my parent’s house via the quiet route, where people were less likely to see me and judge me. In the park next to their house, I sat on a wet bench and pushed my palms into my eyes, hoping to seal my tear ducts and stop whatever was going on. The episode seemed to be passing, so I made my way home. As soon as I walked into the front room with my parents, I tried to forget about what just happened, but couldn’t open my mouth without reverting straight back to that state. I burst out crying again, struggling to breathe; they asked me what was wrong, but I couldn’t muster an excuse. I still can’t. The whole thing was weird. “You’ve been through so much,” they both said to me in a comforting tone.
I tried to process what had brought it all on, but I couldn’t pinpoint anything. I just felt sad. More sad than I remembered feeling at any point during the whole 6 months of initial chemotherapy. The experience was annoying me – I felt angry at myself for not managing to be more positive under such good circumstances. My end-of-chemotherapy scan is at the end of January; if that comes back as clear, I will be classed as ‘cancer-free’ for the first time since my diagnosis. It should be so positive, but I now find myself looming over what that means. All of the statistics around pancreatic cancer are so depressing; you feel like the oncology staff are all treating you like a ticking timebomb who they expect will have a reoccurrence any day. It doesn’t feel like it is ‘if’, it feels like it is ‘when’. During a routine check-up call with one of my oncology team, I asked if I was technically in remission if that final scan shows no cancer.
“No, you’ll be classed as Under Surveillance,” she said. I was probably asking for the wrong reasons. I wanted to hear a medical professional tell me that I’d be getting that big green light. Perhaps they’d even ask if I want to ring a bell. Such celebrations don’t seem to be granted to those with pancreatic cancer. We’re put ‘Under Surveillance’; an Orwellian phrase with sinister undertones. Sometimes, you just want someone to buy into your bullshit. Is it so hard to grant me a single ounce of hope? I messaged Ali Stunt, the CEO of Pancreatic Cancer Action, explaining that I couldn’t find any definitions of ‘Under Surveillance’ on any cancer websites and that I just wanted to know if I could tell people that I was technically in remission if that scan is clear.
“You will be technically in remission, but they’ll be keeping a close eye on you,” she said. “They don’t like using the term ‘remission’.” She’s a wonderful person to be able to speak to about these things; she has been through it all. She understands how hard it can be.
Last Tuesday, I had my first infusion of cycle 3. As I waited in the chair for the chemotherapy nurse to come over and start my treatment, I had my head in my hands. The smell of the chemotherapy ward had made me gag as I walked in, not because it is bad per se, I just associate it with all of the sickness and hurt that I am feeling at the minute. Just being there makes my head spin.
The nurse came over and asked me if I was Ok. After I unloaded on her, she responded, “my sister died of pancreatic cancer about 10 years ago. They could barely treat it at all then.” She turned the iPad that she had in her hand around to show me the screen. At the top was my name and date of birth. Next to this was a section titled something like ‘Treatment Objective’, which was defined as ‘total eradictaion of the cancer.’
“They still see the objective of your treatment as killing all of the cancer, and giving you a normal life again,” she said as she pointed to the screen. It was quite awe inspiring; I wondered if it was a tactic she had adopted before. It’s a really powerful one. That did make me feel better, and I’ve reminded myself of the moment a few times since it happened.
I’m back in treatment on Tuesday for session 2, assuming my liver functioning doesn’t disrupt the schedule, like it did during sessions 2 and 3 of the last cycle. My challenge to myself is to try and get some of that positivity back that I used to have during my first bout of chemotherapy, and stop focusing on the negative. I’m not working down a dusty mine shaft, and my treatment objective is still to eradicate the cancer. There is plenty to be grateful for.
I hope that everyone reading this had a lovely Christmas and New Year, and that you are dealing with the January blues as best you can. It will hopefully be the month that I am told that I have no signs of cancer. What a way to welcome 2023 that would be!
As I lay on the sofa a few nights ago, the TV show I was watching ended. After a few minutes of adverts, a sound I dreaded came on… The news was beginning. I couldn’t see the remote around me, and I was feeling worn out from the chemotherapy. It’s becoming more regular for me to fall asleep on the sofa involuntarily, my personal signature of chemotherapy. I’d been in and out of sleep on the sofa for a few hours at this point. The sound of the news starting, with the summary of all the goings-on in the world and the familiar music, struck me awake, but not quite awake enough to get up and find the remote. I lay there for ten minutes or so listening to the headlines, feeling any enthusiasm and positivity I had for the world drain from my being.
I salute anyone who frequently and voluntarily watches the news. Although I think it is good to be aware of what is going on in the world, it really can bring you down. The list of awful events just reinforces this cynical idea I have in my head that there is a lack of cohesion between almost every force in the world. It leaves you feeling certain that we’re all doomed, and rightfully so. It is a feeling that I just can’t face when I’m already wrestling with the negative effects of chemotherapy. After those ten minutes, I mustered up the energy to push my body off the sofa and looked around the room to find the remote. I saw it on the other sofa. As I pressed the off button on the remote and deadened the life from the TV, I breathed a sigh of relief. Not today, I thought to myself. I’ve got my own battle to focus on. My battle against sleeping every second of every day. I’d been losing it that day.
It made me wonder whether news readers have to compartmentalize themselves from the things that they are reading every day. When it is your job to read that these 50 people died here and that this war rages on there and that there is a potential famine on the horizon in this country, do you just read the words and not process their meaning? Perhaps they are too focused on getting through the thirty minutes that they are on air to really consider the meaning of what they are saying. Maybe they attend parties and roll their eyes as everyone expects them to reel off line after line about how terrible that flood was last week, and how the death toll rises with every day that passes. The whole world becomes work to them, as everyone assumes that their favourite pastime is to discuss the headlines they report every day. A little like expecting an accountant to want to do your year-end accounts at a party because they must have gotten into accountancy as it was their passion – right?
Like the imaginary news reporter I have created here, I find myself struggling to consider the going-ons with chemotherapy this time around. During the first week, it was because nothing was really happening. I had my 30-minute infusion at the hospital and was surprised to learn that it really is just that – 30 minutes of infusion, then home. It sounded too good to be true, so I couldn’t believe it before I saw it with my own eyes. During Folfirinox, the chemotherapy I was on before my surgery, I would spend a good 5 hours at the hospital undergoing the infusion of various bags of chemotherapy drugs. This time, upon learning that I would only be required to do a single 30-minute infusion, and then take tablets every day, I couldn’t believe my luck. Week 1 reinforced this feeling that luck was finally on my side – it seemed that I’d sail through this treatment schedule and be clear of all of this cancer stuff. That is great for me, but it left me feeling dry in terms of content for the blog. There wasn’t much to report, and I don’t want to just continue blasting every nurse who takes blood from me every week; although, the nurse who did my blood test before my first treatment week did make my arm hurt for 3 days… These blood-suckers just can’t resist roughing you up sometimes.
The tablets that I have to take every day aren’t pleasant, but they felt much more manageable than an extended infusion at the hospital. I have to take 3 tablets, twice a day. I was getting into a routine of having the first 3 after my breakfast in the morning, then taking the second load after my evening meal. Because I had extremely bad mouth ulcers during my first phase of chemotherapy treatment, I’ve been conscious of not leaving the tablets in my mouth too long before washing them down with water. I’m sure that has no weighing on whether you get mouth ulcers from them or not, but I’ve convinced myself that it does, so the most stressful part of taking the tablets in that first week was getting the tablets down fast enough without nearly choking on the water. Other than that, it felt pretty simple. Onto week 2.
Week 2 is where the more ugly side effects started to reveal themselves. The infusion was all good again. “I feel like I’m being let out of school early because it’s been snowed off,” I quipped to the others sitting in the chairs around me in the hospital, as I picked up my stuff and left after another seamless 30-minute infusion. It genuinely felt like that; before I’d settled into reading a book or listening to an audiobook, the pump would be making its familiar alarm noise signifying that the cycle was complete. It catches me off guard every time – I just can’t believe it has really finished that quickly. Wonderful.
I was starting to notice that I felt a lot more tired in week 2. The chemotherapy tablets were starting to really mess with my stomach when I took them too, so I was starting to resent having to take them. I’d be eating my evening meal and trying to enjoy it, but every other bite came with another warning thought – “when this is over, you’re going to have to take those tablets again,” I’d say to myself. It puts me off my food as if it is the food’s fault. I know it isn’t, but it is nice to blame something. A few times, I’d totally forget that I needed to take them after eating, only remembering as I climbed into bed. That meant taking them on an empty stomach, which only seemed to make the symptoms worse. I’d swallow them and sit in anticipation as I wait for the sick feeling to come, the pains in the abdomen, the need to run to the toilet; it just wears you down.
The tiredness was getting worse too. I was starting to need twice as much sleep to be able to focus on anything. I’m working full-time now, whereas I didn’t work at all during the last 7 months of chemotherapy treatment. This cycle is definitely more manageable, so I don’t think that it is necessary to go off for the entire time again, but trying to do full days whilst on chemotherapy is hard in my experience so far. Your brain power is just shot – trying to focus on something for a long time is hard, and I get a lot of headaches on this new chemotherapy regime. When you have a banging headache, the last thing you want to do is sit staring at a screen. I’ve started having to take more regular breaks instead, and I’ve been starting a little later in the morning, but it all brings this feeling that you aren’t doing enough and that you should be forcing yourself through those tough patches. That brings a whole new world of anxiety to deal with alongside the already tough symptoms. It was about to get worse, though…
Towards the end of week 2, I started feeling something that I had been dreading. Mouth ulcers. My god if there is one thing I have learnt from going through all of this chemotherapy, it is that I absolutely hate mouth ulcers more than anything on this planet. Why oh why is my body’s default reaction to these toxins in my body to start punishing me even more in the most sinister and annoying way possible. I’d really love someone to explain to me why mouth ulcers are a thing, so I could simply shout “fuck you,” at that individual before throwing the glass bottle of Diflam mouthwash, issued by the hospital to help tackle said mouth ulcers, directly at the nearest wall, followed by a public protest of me licking up all of the green residue until none remained. The mouthwash doesn’t seem to do anything to actually tackle the ulcers themselves, it just numbs your mouth enough that you can’t feel how painful and annoying the ulcers are temporary. Although that relieves some of the symptoms, it does little to actually tackle the problem. I’ve lost faith in those little glass bottles issued by the hospital and engage in them with the same enthusiasm as a gazelle does a lion, as they catch eyes across the watering hole.
On Thursday, I went to Manchester to do some recording for the wonderful charity Pancreatic Cancer Action. They asked if I wanted to be featured in a video they are creating, to be released during Pancreatic Cancer Awareness Month – November, the same month I was diagnosed; another dark nod from the universe, grinning its ugly teeth at me. “Oh, Dan’s aware of pancreatic cancer,” I imagine the universe saying last November as it sat awaiting my diagnosis. Some people only think the universe is against them… I have proof that it is. Anyway, my wife Anna came along with me. Before our recording time, we grabbed some brunch together in a cafe, and I took my chemotherapy tablets. All was well, and the lunch was lovely. As we arrived at the filming location, I started feeling a bit worse for wear, and I was getting some cold sweats, and a sickness was building in my stomach. I was starting to feel bad. I kept my composure and made it through the recording. After that, my plan was to go to Huddersfield to see my best friend Luke. Anna had a work meeting, so she set up camp in the building where we had been recording. I grabbed the keys from her and made my way back to the car to grab my bag. By the time I got to the car, I was overwhelmed with the sickness. My head was spinning, and I was having to wipe sweat from my forehead with my sleeve. I meekly climbed into the back seat of the car, fashioned a coat into a pillow, and lay there with the car door slightly ajar in case I needed to throw up. I fell asleep like this, only to be woken up by Anna returning to the car about an hour later. It was official – I was back in the swing of chemotherapy. It was exactly how I remembered it.
So, as I started week 3 on Friday with the starting gun 30-minute infusion, which marks the start of a fresh week in the chemotherapy cycle, I was not feeling too enthusiastic. My family have been unlucky enough to bear the brunt of my negativity so far, as they are the main ones who are in earshot of my tired complaining, so I decided it was finally time to spread the weight of my complaints across a wider network. That network started with the nurses at The Christie, who I finally informed at length of the sickness I was getting when taking the tablets, and the constant tiredness I was experiencing. The tiredness seems like a pretty standard-issue symptom, and their remedy for that was more sleep… Reasonable, but my unreasonable brain wasn’t happy with it as a solution. I hoped they’d start dishing out speed tablets or give me an NHS-funded Costa card to start drinking coffee by the pint load – hospital orders, paid for by the taxpayer. For the sickness, though, they advised me to start taking anti-sickness tablets an hour before eating, and then see if that stops the sickness from arising when I take the tablets. They advised me that if this doesn’t work, they can issue stronger anti-sickness medication, as the one I am currently being issued is quite low-duty. I don’t like learning that I’m getting the low-duty stuff. Give me the good stuff; I’m not here to play games.
That was on Friday. Today is Sunday, and I find myself writing this after falling asleep on my bed for 3 hours in the early hours of the afternoon, after eating lunch and immediately feeling sick to my stomach for doing so. I think I’m going to need to make that call and get those higher-strength anti-sickness tablets. I’m still not sure what I’ll do about the tiredness, but starting Friday next week is my first rest week, so it should get better from there. All I need to do is repeat this 4-week cycle another 2 times, and then I’m free. 3 weeks of a single weekly 30-minute infusion, followed by tablets twice a day for 21 days, then a week off. It can’t be that hard right? I did double this length of time last time, on much more toxic chemotherapy. The mouth ulcers are still far better than they were at their worst last time, but they started mild then too… Time will tell, I guess.
Like my imaginary news reader, I find myself back at the mercy of my trade – regurgitating events on a page, and struggling to comprehend their meaning. Every second you experience a negative symptom, you struggle, but you understand that this is all part of the game, and there is little time to do much more than grit your teeth and push through to the next milestone, whether that be the next meal, infusion, or rest week. The words do little to alleviate the struggles because you’ve already wrestled your way through them. This is me living to tell the tale, and I’m still grateful for that, even if I do find myself co-existing with a legion of mouth ulcers. They did not have my permission to exist, and we shall never live harmoniously. I’ll continue drinking the Diflam mouthwash by the bucketload and, most likely, continue to be disappointed by the results.
Anyway, I’m going back to sleep. I’ve been awake far too long writing this.
My slight insomnia seems more determined than ever right now, so I find myself starting writing this post at 00:30 on Monday morning. I spent Sunday attempting to support my eldest sister Becky as she ran the London marathon. My ‘attempt’ to support her wasn’t because I was not indeed supporting her through my thoughts and words, but because my physical attendance on the day was cut short due to some fairly routine stomach problems. It’s a shame as I came down to London this weekend specifically to support her on her big day, but after only managing to see her once at around the 13 mile mark, my stomach problems kicked in. I tried to persevere, but sometimes these issues aren’t down to perseverance, and I didn’t want to embarrass myself in central London, in front of my family and my new wife. That really would have been a test of our vows. ‘Bowels testing the vows’. What a horrible yet intriguing sentence. Perhaps it’d make a good play. Someone should write it.
Becky hasn’t run a marathon before and judging by her first message after finishing, I’m not sure she’ll be rushing to do another one. “Fuck am I ever doing that again,” read her first message in our family WhatsApp group. My dad isn’t a fan of swearing, so she must have really meant it. As we’ve gotten older, we’ve gotten lax with our swearing around our dad, but you could tell she really meant those words; it wasn’t just inflammatory for the sake of winding up my now retired dad (he’s finally officially a pensioner as of the close of business last Friday, despite actually taking his pension a few years ago).
Whether she does one again or not, it’s a huge achievement. I know people think every Godley has some natural trait which makes them able to do marathons at the drop of a hat, but it really isn’t true. Some of us go to pretty extreme lengths with our love of exercise – my brother, Greg, goes to extremely extreme extremes, but we’ll come back to that later. Becky isn’t typically one of them, though. She enjoys running to keep fit, but also enjoys actually having free time where she isn’t training. She also probably enjoys occasionally dressing up, having a few too many drinks and getting blisters from her nicer looking shoes, as opposed to already having them from running too many miles, too many times and over too many weekends. I hope she will get to indulge in a few of these now that the marathon is out of the way. She has earned it.
In all seriousness, she really isn’t one of the Godley’s who loves the punishment that comes with these more extreme events. Or she isn’t historically, anyway. Who knows where this will take her now… I know that people will think I’m being modest here, as I have completed quite a few marathons and even more ultramarathons, but I really do put myself in the same category as her in terms of natural ability. I don’t have a lot of natural ability with running, and I think she feels the same way. Any skill I had with running came from sheer determination. I just kept doing it and doing it and doing it, never getting loads faster, but managing to go a lot further. Each time I entered a new marathon, I told myself that this would be the one where I would do an impressive time, but it never really happened. At my first ever marathon, I finished with a time of 3hr 47, and I felt relatively happy, but I thought I could do better. The only other road marathon I completed was the Brighton marathon, and a combination of hot weather and having pancreatic cancer, but not knowing that I had pancreatic cancer, meant I finished with a less-than-impressive 4hr 3. The only thing that I consider quite impressive in my speed repertoire is my half marathon PB of 1hr 38, but this is still pretty slow for someone who trained as hard as I did. Ultramarathons were always more my thing – I could dig deep over distance, and that seemed to give me an edge. But anyway, this isn’t meant to be about me…
Becky may not love the punishment of a tough training schedule, and she may not have the natural speed and agility that my dad had, but she’s ran a marathon. In many ways, it is more impressive to see someone finish a marathon who is not a seasoned marathoner, than it is to watch someone complete their 40th marathon that year. The grit and determination that she showed to get over that finish line is admirable and inspiring. The fact that she also did the marathon in aid of The Christie, the cancer-specialist hospital that provide my oncology care and who have almost definitely extended my life considerably, if not actually saved it from the hands of pancreatic cancer, makes it even more special.
My surgeon told me that most oncology teams in the country, if not the world, would have told me that nothing further could be done based on my diagnosis (stage 3 pancreatic cancer, with an artery fully enclosed by the tumour) and the images produced by the CT scan post-chemotherapy. My specialist at The Christie recognises the limitations of these scans, however, and is an incredibly forward-thinking individual when it comes to the treatment of pancreatic cancer. He is an example of the excellence that The Christie has become associated with. That excellence attracts excellence, and that is how he became associated with my surgeon, Mr Nicola de´ Liguori. Together, their pioneering approach to treating pancreatic cancer, led to the full removal of the tumour, against all of the odds.
Where others would have accepted defeat, they pioneered an approach of calculated risk – daring to hope that by taking on that risk in major surgery, they might be able to generate a better result for me. They did, and I can’t thank them enough for it. Mr de´ Liguori specifically requested that I name him in my blog posts, as he wants to encourage this type of approach more often when treating pancreatic cancer. I’m unsure about my oncologist, and whether he would want me to speak about him by name, so I won’t name him specifically. Mr de´ Liguori has seen more people approaching him for a second opinion on scan results, and he wants this to continue. Many people don’t even realise that one can survive without a pancreas. My brother Freddie is the most recent person to experience this, as he told a friend in the pub that his brother had recently had his entire pancreas removed. “You must be wrong, Freddie. You can’t live without a pancreas,” his friend responded. Freddie then wondered whether he had got it wrong, or if I had even gotten it wrong and had misunderstood what had occurred in the surgery. Neither of us were wrong, though. It just isn’t common.
There are probably a lot of reasons that a total pancreatectomy is uncommon – sometimes the tumour is too established, and it wouldn’t save the patient’s life. Sometimes the cancer has already spread. I’ve seen it sighted online that it is the huge lifestyle changes post-surgery, with the patient being diabetic and needing enzyme replacement for life, that makes a total pancreatectomy an unattractive option. This last one intimidated me for weeks after the surgery, but I feel very differently about it now. The lifestyle changes are immaterial if it saves your life – I am proof of that; you can adapt very quickly, and all of the lifestyle changes just become normal. Far better than just dying. There are almost undoubtedly many cases where such an approach could save a patient’s life, or give them more valuable years. I’m lucky enough to have received treatment at two world-class hospitals, The Christie and Manchester Royal Infirmary. I’m about to start chemotherapy back at The Christie in a few weeks, and I’m extremely glad to be back under their care for what will hopefully be the last phase of my treatment for cancer.
Becky is just under £30 away from hitting her fundraising target, and it would mean the world to her if you could help push her over that goal. You can donate here if you are willing and able.
Becky Seeming a Little Delirious
My brother Greg seems to have far more natural ability in terms of speed and stamina than Becky and me. He gets that from my dad. I put myself far more in my mother’s camp – a person who has run a marathon in her day, and even did a few trail ultra marathons, but who did not indulge in a running schedule totalling an average of over 100 miles a week, acting like it was totally normal like my dad did when he was in his 20’s. Greg is definitely following in my dad’s footsteps. He may have even created his own footsteps on the path to self-damnation with his latest series of events, though.
In the past few weeks, Greg has challenged himself to 3 separate events. He has cycled from Inverness to Preston, done a double Iron Man (where you do twice the distance of the swim, bike and run) and he is currently in Hawaii to compete in the Iron Man world championship, after qualifying for his age category. I don’t really need to speak too much more about it all – the level of exercise that Greg is now engaged in is utterly ridiculous. There is a bittersweet element to watching him challenge himself in this way for me – I never really got into the Iron Man stuff, but we used to do a lot of ultra marathons together. I hope to get back to a place where we can do this together again, but I fear that I will forever be slowing him down now. Perhaps he needs slowing down a little bit, though.
Greg is raising money for Pancreatic Cancer Action, a charity who have helped me out a lot since being diagnosed. Their founder, Ali Stunt, is a 15+ year survivor of pancreatic cancer; that is not something you see very often. It would be easy to chalk this down to ‘luck’, but you start learning that there is more to these things than simple luck. Her determination to help others resulted in her setting up her charity and the work they do is so incredibly important to people like me. She has helped me out immensely throughout my treatment and continues to help me out now. I’m so grateful to her and her team for everything the have done for me, and am so happy that Greg has chosen to raise money for them.
Greg is a couple of hundred away from reaching his target – you can donate here if you would like to. The world championships are happening on Thursday in Hawaii, so be sure to check out the Just Giving page to find out how Greg does in the event.
‘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.’
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.
I cringe internally whenever I read that after (insert treatment or surgery) someone feels they'll be cancer free. I honestly hope that person will be free of this crap, but how many do we know that find out a short time later that the cancer is still there or has metastasized?
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.
It feels a little weird to sit down and write a blog centred around a wedding. Usually, I feel like I understand my role in writing the blog – I describe gritty scenes of hospitals and feeling unwell, demanding the reader’s sympathy, all to make myself feel better about the predicament I find myself in. So where does a wedding fit into a cancer blog? Well, it was my wedding, and I have cancer… or I had cancer. I’m not sure what is technically correct right now. Until I’ve finished the mop-up chemotherapy, I don’t feel like I can say I’m cancer free, but the sugeron did tell me that I was technically ‘cancer free’ before I was discharged from his care. Considering I have just had another scan on Friday, I’m not going to curse it and start ringing the bell of success just yet. That would be tempting fate. Let’s say I do still have cancer, for now.
The wedding date was Friday, September 16th. Despite there being a few days of rain prior to the day itself, the sun showed up for the event. We did personally invite it, so it would have been rude if it had shunned us. Another issue had been looming over the event, though. Rail strikes were planned across England and were majorly impacting the train services which many of our guests would be using to get to the venue. In the weeks leading up to the wedding day, I was receiving more and more messages from friends stating that their trains had been cancelled. One friend who was travelling from France had messaged me to tell me that the Eurostar train service from France to England had even been cancelled, and she was having to seek an alternative route to the wedding. Everything was going wrong. Then, Queen Elizabeth sadly died the week before the wedding, and all train strikes were called off. The circumstances were unfortunate, but they did benefit us. Perhaps the omens surrounding the wedding weren’t so bad after all.
I started the day in my own bed, alone. Anna had stayed with her family in their Airbnb. A sudden panic had come over me as I had no idea where Anna’s wedding ring was, and whether I was supposed to have it. She didn’t inform me that she was going to ignore me all morning, but I got an inkling that this was occurring when she ignored my 3 calls to her that morning. Her mum rang me back a few minutes later, fulfilling her apparent role as ‘messenger’. Luckily, Anna and her mum had the ring. It then occurred to me, however, that I didn’t know who was supposed to have the rings for the ceremony. I understood it was the ringbearer, but who was the ringbearer? It should have been our dog Lucy, but we doubted the venue would allow it. Anna’s mum, Kathy, also would not have allowed the wedding to go ahead if we had actually given Lucy the rings, so the dream was already dead.
I took an executive decision and gave my wedding ring to Keiran, my brother-in-law, and our new ringbearer. The decision was very thought out. “You can be the ringbearer,” I retorted to his complaints that he didn’t have a role at the wedding. Keiran’s thirst for attention needed to be sated somehow, so it seemed an easy fix to both problems. When it came to presenting the rings during the ceremony, he made a huge song and dance out of the whole affair, ensuring he was stood at the front for as long as possible. ‘Forgetting’ which pocket which ring was in, and taking as long as possible to dig them out and pass them over, Keiran made the most of his 5 minutes of fame. “Keiran nearly did a good job,” the registrar said at the end of the ceremony. Even she was sick of his antics; I’ve been putting up with them for 7 years now.
The day went very quickly, as everyone always tells you it does. I could barely breathe between conversations and was constantly getting dragged in twenty directions. All the nerves I felt came at the start of the day, when people started to arrive outside of the venue. Once the ceremony started, they mostly dissipated, only coming back again as the speeches began. My speech was third out of the four, and I sat trying to focus on what was being said in the speeches that came before me, but with one half of my brain focused on the impending speech that I’d have to deliver. Things went very similarly to my nerves at the start of the day, I felt incredibly nervous at first, but after a few of the routine jokes went down well and I really started to believe that I had the room on my side, it got easier. I then got to enjoy my best man’s speech with impunity. All of the speeches were great, and it was interesting to see all of the different approaches taken during them.
By the evening part of the wedding, I was starting to feel tired out. I lasted until about 23:00, though, which is much better than I thought I’d manage at the start of the day. Aside from the guilt of not speaking to anyone enough, the day went as well as we could have hoped it would. I thought that I’d suffer from a huge lull once it was all over. It has been a beacon of light ever since we set the date around 7 months ago; a safety net that was there to support is no matter how bad things were getting in the present. Strangely, I’ve felt quite the opposite. It has felt easy to appreciate that it was an amazing day, but that it is over now.
There is a comfort knowing that it all went so well, and that I am now happily married. I think it is a lesson that I have been learning over the past 12 months. As you adjust to a new standard of life, and a new reality that you exist in, one which requires you to be ever more conscientious of the fragility of it all, you learn to really enjoy something for what it is. We cannot go back and relive special days like our wedding day, we can only breathe life into those memories by chatting with friends and family about them, looking at the pictures and re-experiencing the key components – things like the first dance song or the main course that you chose. That has to be enough once the day is over. If it is not, you will mourn the fact that you can’t do it all again, and it will tarnish how you special it all was. Anna and I have been listening to our first dance song a lot in the past week. It’s been lovely.
The First Dance Song
After the wedding, we spent a night away at a very nice hotel called The Tawny in Stafforshire. We could only get one night at such short notice, which was unfortunate. It has lovely grounds around it, and we spent a few hours walking around and discovering some of the hidden treasures. We randomly found a tennis table as we walked along a path, and Anna proved just how terrible her hand-eye coordination is. It was good fun. I couldn’t take advantage of the hot tob like she could, as the wound on my abdomen is still open and at risk of getting infected. I sat next to the hot tub reading whilst she enjoyed the bubbles. It was a nice way to spend the evening and definitely made it feel special, as we would not usually do something like that so off the cuff. Perhaps we should start being more impulsive like this, but I have 3 more months of chemotherapy to get through first, which is why we hadn’t booked a proper honeymoon yet.
Exploring the Grounds
This week it has been back to the hospital appointments. On Thursday I had a meeting with a diabetes specialist nurse at Manchester Royal Infirmary. The nurse told me that she only did two days a week as a diabetes nurse at the hospital, and spent the others as a sports nutritionist for a university. As a result, we ended up speaking a lot about running and its impact on your body. I told her that I was starting to consider running again, and that I had been running throughout my first bout of chemotherapy. She wasn’t impressed. I didn’t know this, but she told me that your lungs and respiratory system are very vulnerable during and after running. With my body going through so much, with the chemotherapy, surgery, and with the upcoming chemotherapy, she told me that I should be careful. I asked her how long she would suggest waiting before starting again, and she responded that she would wait until at least 6 months after finishing chemotherapy. I was quite shocked, actually. It was a helpful conversation as it has convinced me not to start running too soon, but I’ll inevitably ignore her advice. I’m already itching to get out again and I haven’t even started the final 3 months of chemotherapy. Before I start chemotherapy, however, I have to receive more scan results.
On Friday, I had another CT scan at The Christie, checking for tumours in my body. It is never fun attending scans, and the period in between having the scan and receiving the results is never nice either. I’m still feeling very in the middle of the treatment, so I don’t feel too nervous about it. I think it is quite unlikely that a tumour would have taken hold in the time since my surgery, so that makes me feel better. My life hasn’t really returned to normal anyway, though, so I don’t feel like I have very much to lose right now. If I heard another tumour had started to grow somewhere, it would just mean more fighting. I don’t feel like I’ve left that mode in my mind yet, so fighting on would just be a continuation of the current status quo. It’ll be much harder to cope with the scans if I get to 2 years clear, and I have established a ‘normal’ life again. That will be when it risks completely unturning everything again, like my original diagnosis did. For some reason, I feel like a lot more hangs in the balance in that situation. Perhaps this is all just me rationalising why these results aren’t too important, making me feel better about them. Who knows. For now, it’s back to work, back to scans and back to the ‘real’ world. Anna and I had a few days where we treated ourselves, but it all needed to end at some point.
Sorry for disappearing on the blog again – it was a very busy period. I’ll be back to it properly from next week, complaining about having my blood taken and delving into all the doom and gloom of having/not having cancer. I have so much complaining to do about diabetes that I’m considering writing a book titled ‘Don’t Lose Your Pancreas’, which would be all about how fucking annoying life gets if you do indeed lose your pancreas. Maybe I should call it ‘Dancreas Pancreas’, actually. It sounds like a spell from a Harry Potter book, though. Maybe I’ll write some fan fiction where the world of diabetes crosses over with the world of Harry Potter. Instead of having a scar on his head, Harry could lose his pancreas and then have to manage his blood sugar whilst he tries to fight 3 headed dogs and woo Ginny. That’s probably the only way it’ll actually sell. At least I’ve got a plan for the book now. That’ll distract me from the fact that the wedding is over and I’ve got scan results coming up on Thursday…
Ebb and Flow 