Irritatingly Irradiated
The funniest thing about this whole saga is how certain words seem to never be said. Words like cancer become almost charming euphemisms and notions of a bad diagnosis become something “quite undesirable,” leaving you feeling more uncertain than if someone just said the words.
2 May 2025
The day of the long-awaited MRI! Ah, the standard imaging test really, you know the ones? Where someone tries to cannulate you, but actually appears to be trying to audition for the role of a crucifier. I was amused though by the fact that this is one of the brand new MRI machines in rooms that are described as being ‘calming environments’. Calming if you like a room that someone’s tried to decorate with the sort of fake cloud ceiling tiles you’d expect to find in a primary school. I also find it quite funny, in a way, as you spend most of your time inside a large white tube without any hope of being able to see those clouds, and even if you could the high frequency flicker from the cheap LEDs really would just give you a headache.
In a classic “oh, Mark’s been here” fashion, the hospital catches fire shortly after I leave. No, really.
6 May 2025
A phone call happens to book in a CT scan. They can’t tell me what it’s a scan of, but they’d like to book it in fairly soon. Yay, more machines.
8 May 2025
Another phone call, this time with echoes of my diabetes diagnosis: “I’m calling from the admissions team at the Royal Free Hospital, I’d like to book you in for a pre-op appointment for your upcoming surgery!” “MY WHAT?!” I replied, startling a few pigeons as I left the office. They couldn’t tell me what the surgery was, only that it was important I attend the pre-op.
12 May 2025
My first time meeting the HPB team, or more accurately, the HPB surgery services team. By this, what they actually meant was an appointment with a consultant surgeon and a clinical nurse specialist.
This was where things started to get a bit more serious, and by serious whilst the word “cancer” could still not be uttered, terms that alluded to quite strongly began to be said.
The MRI and MRCP had uncovered a rather dodgy looking area in a main duct intraductal papillary mucinous neoplasm (MD-IPMN), an IPMN itself is not the best news in the world as they have a fair potential of malignancy and a dodgy area in one is an even worse sign. However, according to the surgeon, there’s nothing definitive but they’ve been thinking about whether I require a total pancreatectomy or not. Because of the uncertainty around it they’d quite like to do a lot more testing as they could put me through the operation for nothing.
I’m asked about my symptoms, and specifically if I have any GI issues. I highlight, once again, my issues with fat digestion, and he immediately asks “and you’re not on CREON? Why aren’t you on CREON?” as if I’d actually know the answer. He looks at the CNS and says “can we get him on them now?”, who immediately dashes off to get me a script.
Whilst the CNS is out of the room I agree to a battery of more tests: a PET-CT, an endoscopic ultrasound (EUS) with biopsy (FNB), and some bloods specifically looking for cancer markers. I point out that a CT is already booked, and he goes “oh that? that wasn’t me. That’s someone else. It’s for staging. STAGING.” and he wishes me a good day.
Turns out he was a bit premature in doing so as on my way to go give yet more blood to the phlebotomists, I get a call from the HPB receptionists asking me to come back and see the nurse, so I rush back to see the nurse who then gives me a booklet about how to use PERT… and her contact details, on a hand towel as they’d run out of cards and paper.
15 May 2025
The preoperative assessment was another shining example of how nothing can ever go without some sort of administrative carnage, in this installment the nurse carrying it out actually wasn’t sure what I was there for, or what operation I was being assessed for. In a continued twist they also decided that I may have heart failure and started yet another, albeit it brief, cascade of medical drama. Turns out it’s fine and my heart works, somewhat of a miracle given the panic that caused.
My particular highlight (hah!) of this entire appointment, though, was when the nurse was explaining the potential complications of any surgery and how blood clots are an issue for certain people. They then chose that moment to use their highlighter to colour in “if you have cancer”, before promptly moving onto the next reason blood clots are an issue. A masterclass there in something, I don’t quite know in what, and I still don’t have the words to describe how I felt about that afterwards.
19 May 2025
Irradiation day! I’m thankfully accompanied by a friend, who perfectly summed up what they were going through as a journey. My problem with this journey, though, is that it is in a car where someone’s helpfully painted over the windows and the child lock somehow affects every door. What makes it worse is that the car seems to be a Robin Reliant. It is the biggest thing I hate about having a “serious and guarded” prognosis; it doesn’t just affect me – if it was just me I’d be absolutely hunky dory about the whole thing – it’s the way it brings sadness, fear, panic and dread to others and I absolutely can’t stand that. It’s not my style; I’m much more about love and unicorns, and currently I do seem to be running a bit low on the unicorns.
After receiving eight years’ worth of radiation in one go, we celebrated with an excellent pizza and dessert, requiring the use of both far too much insulin and CREON. I say too much but actually there isn’t such a thing. Something that people really do need to understand, is that just because my exocrine and endocrine systems are a bit knackered, I’m still entitled to live a completely normal life. If that means I want to eat a giant pizza, covered in fat, chased up by a overly sugar encrusted dessert, then I shall. That is called living.
20 May 2025
A double-appointment special, with a splashing of work today, first off a CT of my thorax for those staging purposes. Super urgent, though, and the report was rushed out in no time. My only complaint is the dude who did that cannulation had evidently been trained by the guy who did the MRI cannulation as he could have caused less pain by using a harpoon. I note as I’m slid into the machine that the ceiling has one of those fake cloud things, except half the LEDs are dead, which is wonderfully reassuring.
The second appointment was another pre-op, but this time with the anaesthetist. This was much more interesting as they’d got most of the reports – including the one from the thorax CT but sadly not the PET-CT – in front of them. They were the first person to actually say “so they’re concerned that you might have a bit of cancer” and that “this is one of the most complicated operations that we do here”. Both things I was sort of aware of, but to actually hear it provided a profound sense of calm. Yes, calm. No panic, or fear, or anything like that, but genuine calm and acceptance because someone had actually said it. The anaesthetist then explained how the surgery works, the size of the incision, the difficulty of recovery and provided me with an estimate of my chances of dying which whilst small are very real. Again, because of how they explained it – clearly – there was no panic induced. That said, we did get a decent amount of time discussing the different impacts of different surgeries on different types of anatomy because it was an excellent opportunity to learn some new things.
I did surprise the anaesthetist when asked how I felt about the (potential) operation by saying: “to be quite honest with you, quite excited,” which their response to was “that’s not normal, surely you mean hopeful?” I was honest and explained that actually I’m excited as if it gets me more time to tell everyone, loudly, what diabetes is like, what pancreatic enzyme insufficiency (PEI) is about, and if I can prevent other people from ending up in my situation, then I win. Bonus points are available if I get to be living again, as this just being alive thing is seriously quite boring. I mean, I haven’t been on a FlixBus in over a year and I’m more allergic to that than this risk of dying business.
23 May 2025
My appointment with the diabetes doctor, as usual, went a little awry and because of an emergency the doctor wasn’t available. I was offered a phone call in a couple of weeks or to wait and be squeezed in. I chose to wait; I’m a professional patient now and in no rush. Well, that and I knew the PET-CT report had been released that morning, and that one could change everything, and I longed to catch a glimpse of it.
I’m called in, and we sit down, go through my diabetes management (still doing exceptional, 88% in range this time), and then it happens, I get the glimpse I was waiting for. Whilst the PET-CT showed fludeoxyglucose (FDG) uptake in my pancreas, it’s low grade and there was no evidence of any sort of spread to any other part of my body. Some good news for once, well, where the scale of good ranges from crap to dreadful.
2 June 2025
The most dreaded appointment of all, an endoscopy. I am very sorry to say that these are as rubbish and awful as you’d expect someone shoving a tube down your throat to be. Unfortunately, despite being sedated, I have a fair few memories of the process that I’d rather not remember, including just how damned uncomfortable it is – but good news, the report states that it was “well tolerated”. The bad news is that there is indeed a concerning section of tissue in the IPMN, and they took quite a few samples of and sent it off for histology.
Thankfully, again, a friend was there to deal with the aftermath of this procedure. Y’see, post-sedation you’re meant to be a bit questionable for a while and on this occasion my friend was very much looking forward to being in a position to record all of the curious and interesting things that I’d say and do whilst the sedatives wore off. Sadly, for them, I appear to be fairly resistant to the drugs they used and it had almost all entirely wore off by the time I was bundled into their car.
We made it to the Lido for greasy, ill-advised food before the local anaesthetic in my throat wore off. The bruising became very apparent later, but I don’t regret eating that burger before even thinking about drinking became painful.
And then back to the silence which in a way was incredibly welcome. You see, I always take the first part of June off for historical reasons and got to actually spend some time almost relaxing into the knowledge that this leg of the journey was starting to come to some sort of conclusion.