Author: Mark Coughlan

That’s a quote from a great friend of mine, speaking about rugby. It stuck with me because it’s true, and right now, it feels especially relevant.

I’m angry. I’ve just had to explain to my daughter that my time here is now measured in a few years. The sound she made when I told her will haunt me as long as I’m able to be haunted.

I wouldn’t usually start a piece like this. Good writing has an arc—an intro, a middle, and an end—but today, I’ve peaked early. But stick with me, we’ll get to the anger soon.

A while ago, I had a check-up with my oncologist after months of chemotherapy and radiotherapy. She told me, “We no longer consider you critical.” I remember that phrase clearly. At first, my literal mind took it as an insult, but after a moment, I realized what she meant. She said it with a smile, which made me focus on the positive: I was feeling strong, the pain had subsided, and the only real issue was my energy levels. I crash pretty quickly.

She booked me for a pre-surgery PET scan, followed by a consultation at St. Thomas’ for surgery. That’s when things started to go south.

The PET scan at King’s College Hospital went as smoothly as always—they’re efficient there. But then I got a text about an appointment at St. Thomas’. It was all expected. I showed up on a beautiful morning, almost with a spring in my step, but that’s when I encountered the rudest, most awful person I’ve met on this journey. She asked me why I was there—uh, you sent me the appointment—and was dismissive and rude. I didn’t have the chance to tell her what I thought before I left, frustrated and confused. Anyone who knows me knows how well I deal with this kind of treatment… which is to say, not well at all.

A few days later, my scheduled phone catch-up with my oncologist turned into a face-to-face appointment. The moment I saw that, my heart dropped. I knew something had changed. I understand the differences between MRI scans, PET scans, and all the technical details, so I figured the PET scan must’ve revealed something new.

I was right.

Percy is now in my liver and stomach lining, or at least, something is there. The thought is that it was missed before because it’s close to the scar tissue I already have. Strangely, I wasn’t particularly surprised. The first time I went through this, I accepted my fate, but things turned out differently. Deep down, though, I always knew this was a facade. Truth is though it lasted a lot longer than I expected, and I learned to utterly love it.

I think that’s why I’ve always lived so intensely—why I’ve been so intolerant of being treated poorly. It’s also probably why I’ve made several short-term mistakes, but I’m not dwelling on those. I’ve done a lot in my life, always opting for experience over consequence. I’ve always I think worked out what I wanted to do, and then worked out the how to do it. It’s paid off. My love of Australia came from this—despite my deep fear of flying (which I still have). It’s why I learned to scuba dive and jumped out of a perfectly good aircraft. It’s also why I’ve fallen off bridges into canals and even got deported from Belgium. I even had a plan! I had a world map, with all the places I wanted to go, with different coloured-pins so I knew how to prioritise. I did pretty much all of them, bar those in and around Persia – although I did manage a bit of that I’m not going to talk about.

So, from being told I was “no longer critical” on February 25th, to meeting “Shitface” at St. Thomas’ on March 3rd, to hearing on March 13th that surgery isn’t an option and I’m being switched to systematic chemo, and palliative care…. it’s been a rollercoaster. Oh, and I’ve been advised to get my affairs in order. They always were of course. In order. I have a spreadsheet.

Let me be clear: I’m not angry about what’s happening to me. I’m angry because of what I’ve told my daughter over the past couple of months. We celebrated, we shifted our outlook—only for me to break her heart. That feels mean.

But here we are.

I’ve been here before, and I outlasted what they said by 23 years. Who knows? Maybe this time will be different, but deep down, I feel like I haven’t gotten away with it this time.

I’ve asked a specialist at the Royal Marsden to take another look at my case. After discussing it with them, they agreed it seemed chaotic and warranted a second opinion. I don’t expect a different outcome, but I have to check.

Physically, I feel healthier and stronger than I have in ages. My biggest battle now is in my head. I feel so utterly defeated. I don’t know how to handle feeling like this, as it’s not something I normally experience. I’m not sleeping, and I seem to have given up on food too, which is a bit weird as I love food. I’m now eating to stop me losing weight, rather than eating because I want to/need to – I’m not explaining this very well. I’ve always prided myself on being able to just brush myself off, get up, and go again. I can’t seem to bring myself to do that right now.

I’ve backed away from my friends for a bit too. I just need some time to get my own head straight on this – also it does seem to be the only thing people want to talk about, and it’s exhausting. Of course I appreciate people being interested, however being asked the same thing by different people…it’s difficult. I’m far more than this horrid disease. I’ve a lot more sarcasm in me. I’ll be building those bridges back shortly though, as I slowly get back out into the world.

I’m going to get back to doing the things I love though, absolutely. I just need my brain to catch up with The Plan. Weirdly, some of that is work. I’ve always found it odd to be paid to play with Big Tech, but I’m in. My bucket list has changed, though. Previously, it involved a map and a lot of pins—I did most of it. This time, my bucket list is all about making sure my daughter has nothing to worry about forever, so she can focus on the experiences she deserves. That’s my bucket-list Maldives right now, although I suspect it may also involve the actual Maldives, and a t-shirt for me that says ‘She’s my Daughter!’.

Apologies for the disjointed nature of this post. I’m usually more organised in my writing, but as you can tell, I’m a bit full of anger and a fare dose of frustration right now.

I had an appointment with my doctor today, and I heard the words: “We no longer consider you critical.” That took some processing. It’s good news, of course. I’m still on the curative track.

I have some tricky surgery coming up, so now it’s all about preparation. I finally understand the timelines I’m dealing with, and honestly, they’re pretty good. If all goes well, I should be out there bugging people to come out and play by summer.

So why do I feel so… meh?

I haven’t fully figured it out yet. Part of it might be that I never really expected a different outcome. I knew things could go another way, and I understood the numbers, but I’m not a natural worrier. I don’t tend to stress over things I can’t control. I focus on doing what I can to get the best results, then I move on. Maybe that’s playing into how I’m feeling now.

But it’s more than that. There’s a lot more to me than just my physical state, and right now, it’s not my body that’s struggling—it’s the other, less tangible stuff. It’s how I feel.

I’m tired. Tired of being tired. I have so much time on my hands, yet no energy to do anything with it. It’s frustrating. And boredom? That just fuels the cycle, making me feel… I don’t even know what. But it’s not great.

I wrote a while ago about misunderstanding ‘the fight.’ I see now how wrong I was. Every day is a fight—but strangely, it’s a fight with myself. A fight to get up, brush myself off, and go again. Some days, I win. Some days, I don’t. And on those days, I feel guilty for not pushing through.

On the bright side, I’m getting really good at Call of Duty. So, there’s that.

This story caught my attention tonight on BBC News. Essentially its the Doctors saying our care provision for cancer within the NHS is inadequate.

Weirdly, I don’t feel qualified to answer this with any real insight. The whole thing about anecdotes not being data applies I imagine. If, however, you can accept that perhaps I may not be as objective as I normally try to be, I can proffer some opinion.

Firstly, let me very clear in a way that I wasn’t in a very early post that got me some online grief. I have never, not even once, come across somebody in my whole experience who I felt wasn’t trying to be helpful. Any criticism I offer here is around the system, not the people.

Now, the bit that really sticks out in this story for me is this bit:

This bit I can 100% and completely agree with. The difference in care and provision I’ve received between Barts Health NHS Trust (Royal London Hospital etc.) and Kings College Hospital NHS Foundation Trust has been beyond explaining. My early experiences with Barts – now I’ve experienced KCH – were awful. Every appointment hugely late, getting hold of the right people always a challenge.

To give you an idea, back when my situation first started in early 2024, I was given a referral to Urology. That appointment still has not happened. I had one phone call where a hassled man talked at me for about 4 minutes, told me he’d arrange a face to face…and all I’ve had since is letters cancelling and rearranging the appointment.

I’d have gone insane if the level of pain I was in really was down to something urology would have dealt with. It gets even more bizarre that I’ve emailed & rang a few times to tell them I don’t need to see them, but the cancellation and rearranged date letters still keep arriving.

There’s an air of chaos around Barts, and also Guys & St. Thomas’ when it comes to cancer care. An air of chaos that simply does not exist at KCH.

It is the compliment of the care I’ve received from KCH that’s made me realise how awful Barts was – please, before the messages, refer to what I said above about the people. I don’t mean them.

Whenever I’ve had to visit KCH every appointment has happened usually within 10 or 15 minutes of the booked time, and they’ve never been rushed. They’re also excellently prepared and seem to have access to all of my notes. My ending up at KCH quite literally, and without any drama, probably saved my life. It was the first time in an age I felt listened to, and they took their time to work things through with me. I was admitted the afternoon I turned up, and over the coming week the A&E consultant who admitted me also checked in to make sure things were moving.

I couldn’t have asked for more.

Anyway, it’s incredibly obvious to me – as a layman – that the funding levels between Barts and KCH must be hugely different. I can’t think of another reason for the difference in care levels.

Moving on slightly, I also think I’ve been very lucky to fall under the care of Oncologist who actually seems to care. I won’t name her, but she has been utterly fabulous in the way she’s helped me through this.

This seems to be my experience too. I was utterly lost and in substantial pain until I happened up on KCH.

How to fix this, or understanding what the causes are, are well above my pay grade or understanding, but I have a lot of sympathy for people who have not found the right path. The difference in my day to day between Barts & KCH is astonishing.

Anyway, this feels like I’m ranting. I am absolutely not – if anything, I’m sympathising with a system that’s struggling to cope.

If I had some advice – some advice I wish I’d have taken – if you’re not getting what you need please, please go somewhere else.

I’ve been quiet lately, and I know a few of you have been wondering what’s going on. The truth is, it’s not that I’ve been busy—I’ve just been filling my time with things that aren’t really moving me forward. My days seem to blend together now, and if I’m being honest, I sometimes forget what day it is at all.

Not long ago, I was someone who prided themselves on being a champion sleeper — only 5-6 hours a night. Now, I’m struggling to even get to bed. I’m often staying up well past 4 AM, which means I’m not really seeing the daylight until after lunchtime. It’s a strange shift, and I think it’s largely because my schedule’s been so empty. When I have things to do, I tend to get up and get things done. So, I’ve been making a conscious effort to fill my days with more tasks, and it seems to be working—I think this might be the first year I’ve ever submitted my tax returns early.

But that wasn’t the question I was asked. The question was: How am I doing? What’s going on?

I’m honestly flattered that so many of you care enough to check in. It’s a tough question to answer, but here goes:

I’ve mentioned before that I’m hoping to come out of this experience with a more positive perspective on people. I can see now how many of my past “reads” on others were way off. I still misread people, of course, but I’m learning to adjust my expectations and outcomes. Sharing this with you feels strange, though. I’m not totally sure how I feel about opening up in this way, but it’s out there now, and I’m rolling with it.

So, how am I, really?

Physically, I’m stronger than I’ve been in a long time. I’d say I’m about 80% back to normal. Pain has become more of an occasional discomfort than something I deal with every day. I’ve learned to manage things better, but I’ll admit, the boredom and lack of structure are starting to get to me. I’m not handling the lack of motivation very well, and it’s certainly keeping Amazon busy.

Mentally? That’s another story. I’m more exhausted in my mind than my body. It’s hard to explain, but sometimes things seem so overwhelming—even though I know I can handle them physically. It’s a strange new experience for me, and I’m working through it. Usually, my stubbornness is my superpower, but right now, it feels like my coping mechanism is failing me. I’m trying to figure out a new way to deal with things, and I haven’t quite nailed it yet.

The good news is, I’m aware of it, and when my brain tries to drag me into “The Funk,” I give myself a stern talk and push through it. Mostly, that works.

What else? Well, my radio-chemo wrapped up in December, and I’m getting closer to the end of the waiting period for the next steps. I had a CT scan recently, and after that, they moved my pre-surgery MRI up by almost a month—this weekend, in fact. Apparently, that’s a good sign. I didn’t totally understand the explanation, but it came from someone I trust completely, so I’m rolling with it. After the MRI, I’ll meet with the oncologist and her team, and then I’ll head into surgery to finally package up Percy and fire it in to the f***ing sun. I’m feeling calm about it all. As you can tell.

I do have a small gripe, though: I often get appointment reminders with no explanation. I’ll be called in for a CT scan, and then two days later, I’ll get a message saying, “Your MRI is now this Saturday—don’t cancel.” For a second, I freeze. I understand they deal with this stuff every day, but a little more context would go a long way. It’s confusing and, honestly, a bit unsettling.

I’m still unsure where I am on the path to surgery, and I think that uncertainty is contributing to some of my frustration. For example, I recently agreed to take on some design work, but I couldn’t commit to the delivery. Now, the team’s asking me to help with the delivery, and they seem confused when I keep saying no. It’s not about money, but they seem to think it is —I just don’t feel strong enough right now, and I don’t want to start something I can’t finish. Plus, it’s Cisco, so there’s that.

So, where am I? In short: Positive CT results, MRI on the horizon, and surgery waiting in the wings. Physically stronger, mentally drained—but I can see a sunny beach on the horizon, if that makes sense.

I’ve also got to mention my family and friends—they’ve been amazing. I know I can be tough to understand at times, even when I’m in a good place, so I can only imagine how hard I’ve been this year. But they’re here, doing their best to hold me up, feeding me snacks, and making sure I never run out of milk. Honestly, I’ve never felt more loved in my entire life.

So, that’s where I’m at. Mentally tired, physically stronger, but surrounded by people who make it all worth it.

I’ve spent the last few days being stared down and utterly annoyed by half an onion. Not even a full one. I dropped it in the kitchen when cooking the other night, and it’s been mocking me ever since.

It’s not even in an awkward place, just down between a couple of cupboards and the bin. The problem I have is that bending down can make lights flash in front of my eyes and then it’s significantly later than I thought it was. This isn’t the thing that’s stopped me doing it though. No. It’s my brain being a dick.

I’ve developed this weird mental bullying that I should just fucking deal with it whatever ‘it’ is. In this case, it’s an onion. On the floor. How hard can it be? 

The other night, I almost asked someone to grab it for me. But I stopped myself. I didn’t want to admit that I couldn’t even pick up a fucking onion. My pride kicked in, and I thought: ‘No, this is my problem.’. It’s as baffling to me as to why I hated that onion with a passion I cannot begin to describe.

In reality of course I’ve been having a tough week (Okay…year). My normal strategy of just facing down the world out of blatant bloody mindedness wasn’t going to plan. How very dare it. Given my limited emotional scope, I chose to channel my frustration into this poor, undeserving and abandoned vegetable. If you’re interested, that thing is now eviscerated to the point of no return, and with some malice. After somebody helped me pick it up of course, and then me completely re-arranging my living room to accommodate being unable to deal with the onion situation. I thought giving myself a far larger issue to regret may take my mind off it. I can confirm that no, it did not.

I sometimes struggle to consolidate the anger I feel at myself for not being able to deal with the most basic of things, with how I would hope I’d treat others in the same situation. I’d have just grabbed that onion and forgotten about it in seconds. For me it just became a monument to my failure to deal with the most basic of things.

Still, perspective, something I will never get.

PS. Fuck that onion.

Addenda: I struggled to present the context of this one properly, it reads more negatively than I intended, so please try read it as such (well, if you read it at all!).

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I find how people behave interesting – mainly as I don’t really understand it, for the most part. It’s no secret I struggle with this – it’s been obvious to me for several years that people communicate with more than just words. There’s some form of social dance that goes on, one that I am not equipped to read. It leads to confusion sometimes, and often frustration on my part (and sometimes offense on the other). People often think I’m annoyed about things probably a factor of 20 more times than I’m actually annoyed about anything. The irony being that when I am annoyed about something they really do know. 

It’s taken me a long time to realise that this isn’t on purpose, it’s just how we communicate is different. One thing shines out from all of this – for me anyway – and that is that I have a very literal view of the world. Usually what I say is exactly what I mean, without any embellishment. This isn’t however how most people communicate. I will never understand why somebody saying ‘The car is blue’ is seen as harsher as somebody who says ‘The car is very blue!’. Reading that back I think that needs to be said out-loud for anyone to understand what I meant. It’s especially true around subjects that make people uncomfortable – with one of those subjects being death. 

Death is a weird subject isn’t it? I mean even the tenses of the word bothers people in different ways (me too, but I’ll get to that in a minute). Die, died, dead, dying. Some of these words I’ve observed give people ‘The Fear’, so it got me thinking about them too – mainly as this proposition has raised its head in my surrounds recently.

Let me put it out there – dead doesn’t bother me any more than not being born. It’s a state of being I have no relation to, no memory of, so I have no fear of it. Dying however – the transition – that bears some concern. I don’t want it to be awful. I also don’t think it’s that hard – I mean people  of our type have been doing it for at least 300,000 years, and if they can do it I reckon I’ll do it just as spectacularly. What concerns me most though is the impact on others. This is a fairly modern thought for me, and one I should be – am – thankful for. –

In a break to the prose – a scene setup if you will – I journal a lot. I use it as a way to keep myself focused on what I want to do, what I don’t want to do, what’s working, what isn’t etc. Those journals take form of writing and audio notes. I know this isn’t unique to me – a personal diary is hardly earth shattering news. For me though, sometimes, I read stuff that I can’t remember experiencing or writing about. I sometimes don’t remember the scenarios around why I wrote something. That can sometimes be incredibly jolting to read. If you can’t be brutishly honest with yourself, who can you be? That’s also the reason my journals are so locked down.

Anyway, death. Post sponsored by omg drama – it isn’t, but you won’t read it in the right way if I don’t set the perspective first. Try it again, without the drama. I’m right aren’t I.

A few of my journals from Late Jan/early Feb 24 this year were about how to handle things if I died in the next couple of years. I’ve enacted many of those things. Digital separation was a right effort – I’ve ended up managing so many people’s backups, photos, iCloud, email (29 B2 365 licenses if that means anything to you), and even have separate password databases for people. Not least for the ‘Daaad how do I logon to Instagram?’. Sure, Law Grad, I got you. Finances were another. I’d accidentally ended up with complex finances through laziness, so I sorted those out into a couple of institutions, documented them etc. I even put together a hard disk with all the stuff my daughter could possibly be ever interested in, and of course included the password to the email account I’ve been emailing to since she was ….probably a year old? – about our experiences. I even read most of them – had a few tears, but mostly smiles and joy.

All of this was gloriously organised, and very much, well, me. Then I stumbled on some entries from late Jan/early Feb and they scared me a bit. Back then, I’d not had any diagnosis and the current thinking was .. limited. Yet the pain I was in was exponentially getting worse. Some of these entries involved how I would measure when enough was enough, and what I would do when enough became enough. Two things struck me about these entries – and the timeline matched too:

1: Practicality. How, organisation.

2: Impact on people.

I had item 1 nailed (all of them sucked, to be clear), item 2 however is where everything fell apart. I have experience of a very close friend choosing not to be here, and truth be told I still haven’t forgiven her for it. It’s a quiet unforgiven, but it’s certainly there. I don’t think it would be enough for me to not land on her like an over-excited Labrador as I’m sure I will when we finally get to meet again. You get the point. It’s a quiet anger, as in reality the anger is really inward – how didn’t I know that somebody so joyous, so important to my day, was having such a hard time?

My conclusion from this – and perhaps I haven’t explained this properly here – is that it’s people that got me through that period. That’s you, and you. Texting me repeatedly when I didn’t/hadn’t replied, emailing, calling. Turning up at my house with food. Shouting at me when I was in so much pain I passed out and then blamed some random drug. You gave my day value, you gave me value. I don’t think I can ever thank any of you enough for that.

I’ve been through a bit of a transition. I don’t think I’ll ever ‘forgive’* my friend for what she did, but I am so, so much closer to understanding it. For that though, I need to bear some responsibility for not being as solid as my ‘family’ has been. I will do my very best to make sure I never make that mistake again.

*I’ve struggled with this sentence. She doesn’t need my forgiveness, nor am I qualified or responsible to give it. This bit is all about how I felt. I know what I meant, I just can’t find the words.

I got asked an interesting question the other day – how do I decide what to video-blog and what to write. It caught me off guard a little, as I’d not given it much thought. It didn’t take much thought though to come to the conclusion that I write when I know I would struggle to talk through the subject I’m discussing. I struggle to ‘talk’ about some things – the more I try, the harder I find it, and it becomes frustrating. That frustration comes out in different ways – a common one that’s always misread is that I can look upset. I suppose I am in some ways, but it’s really frustration rather than what I’d imagine being emotionally upset would mean. If you want an example of that, check out about 8 mins 45 of this. I look upset, I‘m not. I’m frustrated because I’m struggling to make the point that is in my head – I just can’t find the words, and the more I try find them the further away they seem to get.

I’ve mentioned before that in my psychology studies I came across the thing about people without an internal monologue. I am one of these people. The thing is, until I’d read about it, I didn’t know I was any different to anyone else. The idea of having some form of running commentary in your head I just find bafflingly hard to ‘grab’. Is it like a compere? Is it Morgan Freeman? If I had to have one, I’d like Morgan Freeman: “Mark thought having another beer was a GREAT idea!” //Morgan Freeman: “It was not, in fact, a great idea.”.

I can’t imagine what it’s like any more than I can explain what it’s like for me – I don’t have ‘words’ in my head. I think stuff, it forms into words, and then falls out of my face. I’ve wondered (now) whether this is one of the reasons why people can find me overly direct and blunt. I can of course do the voice in the head thing, but to me it’s usually reciting stuff I’ve seen or experienced, it isn’t conversational. It’s kind of like watching a movie, rather than generating my own content, if that makes sense.

Anyway, I’ve wondered whether this is why I can find talking about such things difficult? My personal jury is out on that one. What did happen however is it got me reading my personal journals about such things – I tag my journals, so it’s pretty easy to filter by things related to how I’m feeling. 

It was a bit of a shocker, and in some respects genuinely upsetting. I’ve a wonderful skill of forgetting bad stuff like it never happened. I know I was in a lot of pain (hell, I passed out several times because of it), but can I remember that pain? No, I cannot. I know it happened, but I can’t remember what it was like. If I try think about it, all I get back is a ‘yeah, zero stars, let’s not do that again’. So what did I find so shocking? My personal writing about my chemo experiences and how I feel about them today. I can’t relate to what I wrote, although I know through the language that I wrote it.

Now I’ve had a month off from treatment (radio-chemo starts Monday – I got this! – it’s currently Thursday), I’ve had time to consider stuff. I’m feeling stronger than I have in an age, it’s been so good to get most of my day back. I’m still not as strong, my balance is a bit off, and when I decide I’m tired oh my god it’s immediate rather than hey, I need a rest soon….but, compared to before I’m leagues away from there. I’m doing my ‘relentless positivity’ that sometimes others talk about and yet I don’t quite get. 

I’ve been reading my notes about my chemo experience, and they’re a bit…unrelatable. They’re so different to how I currently feel about my treatment that I’m wondering if I have perhaps misrepresented it and made it out to be a walk in the park. I know it wasn’t. I’m sat here fully knowing the level of relief I felt finding out I was only doing 3 months rather than 6, but my memory of chemo was unpleasant but manageable. My journals say otherwise. The 4 days around chemo – 1 day lead up, the treatment day, and the couple of days afterward – became something I dreaded. I know this now, I just don’t think I appreciated how much. 

In one journal I talk about finding it so hard I was going to ask them to stop. As I’m sat here, I cannot relate to that. I don’t know why I wrote  that – more than once – or how I’d got there, but I also know how I deal with such horrific things – I deal with them, and I move on, and then it’s like they never happened. The positive journals then came out as soon as I allowed(!) people back in to my place usually by Saturday PM when I had had my chemo pump removed and was starting to feel a bit more human (chemo was on a Thursday). 

It was also written in a pleading manner too – not something I’m used to experiencing in myself. Usually I’d be fuck this, I’m not doing this anymore, so simply wouldn’t. I know why I did of course – because it was the right thing to do, for me, and for those I love, and, despite my attempts to make otherwise, seem to love me too.

So yeah. I write about stuff I struggle to verbalise. Part of that is because of a lack of understanding of things, and it’s obvious to me now that writing about stuff helps me understand the subject more than perhaps just talking at a camera does?

Not too long ago I was talking about language on one of my vLogs. Specifically, I’d mentioned that I sometimes find language frustrating in certain contexts – in this context, the idea that you can ‘fight’ this disease. It irritated me. I kept wondering why people referred to it. What happened for the people who didn’t come through? Did they not fight enough? ‘Keep fighting’ people would say. It was a weird choice of words to hear for me. In my head you can no more ‘fight’ this disease than you can fight being hit by a train, and nobody would suggest fighting that.

Now I’m over a year in however I have a better understanding. I still don’t think you fight this disease, but that’s not to say there’s not a fight going on – there is, often every single day. For me the fight has been motivating myself to get up every day and get on with stuff, regardless. The fight to not give in to that want to sit on the sofa and disappear in to my own head, not consuming crappy movies that happen to be on.

Truth is I didn’t manage that for quite a while, however with some perspective I understand why – I was in a significant amount of pain, combined with getting care that missed the mark significantly. I spent the best part of a year being told I had something like prostatitis or an enlarged prostate (to be fair, I’m probably about the right age), and having naproxen and stuff thrown down my throat. Staying with the train analogy, that’s like trying to treat being hit by a train with band-aids. I’ll forgive myself for that, I think. Not seeing any progress, and getting worse, well, I struggled with knowing what was next, and looking back that was really impacting my mental health, not just my physical health. I was losing my natural positivity as I couldn’t work a positive outcome. I couldn’t see when my days were going to get better.

I’ve often heard from people that I can be relentlessly positive. That’s also something I’m not quite sure I understood. Giving it some thought, I think it’s actually the other way around – I’m not a worrier. I don’t tend to worry about things I have no control over. With things where I do have control over outcomes, I tend to work out what the outcome is that I want, and what I need to do to work toward that outcome. What I don’t do is then constantly worry about whether I’m going to get to that outcome or not – it seems such a waste of brain energy & time to do so, and fortunately it’s something I’ve trained myself not to do. Perhaps that’s where the perception of ‘relentless positivity’ has come from? 

The last year has been a bit of education journey for me in some respects. This is one of those things I was wrong about – people can and do fight when they’re going through this stuff, but the fight isn’t what I thought. The fight is with yourself, and that’s arguably a tougher thing to process than fighting something tangible.

My fight goes on, but what I do know is this – today is a lot easier than yesterday, and it’s harder than tomorrow will be. Today that fight involves making some Thai curry – my favourite food in the world.