THE NEW NORMAL #49 – REAL BLOOD, PROPER SWEAT AND ACTUAL TEARS

I’ve been writing this blog post in my head for the last 8 days as I recover from the largest surgery I have ever had and hope I ever will have. The speed with which your body and brain recovers social niceties like “please”, “thank you” and “sorry” but also renders you a drooling, napping vegetable by about 11.00am every day is fascinating. Anyway, for those who’ve been following the story, we’re getting to the big fight scene or battle now, the denouement , if you will be so pretentious. I know I will.

Before we left Cornwall, we decided to leave my little boy with his auntie and they were to come to our house to collect him. We hadn’t talked about this moment at all but as soon as it arrived we both started doing that silent sobbing when you know something had changed or is about to change and you want to go back to the start but you just can’t. How could I say goodbye for potentially the last time? How could his mummy take his daddy away and then not bring him back? In the days previous we’d been making travel plans, dismantling the bathroom and doing a bit of gardening so when the big moment came all I could utter was “you know daddy loves you don’t you?” and “be good”, the best advice I could come up with. The look I got back was something akin to the teenagers withering look of “ugh, don’t be a knob dad” but I’ll take it. Once he was away from the house there were actual, proper, ugly tears but then we got our game faces on (we’re good at that, my wife and I) and headed for London. There were more tears in the disabled bay outside King’s College Hospital as Covid-19 meant that my wife couldn’t come in with me but once inside I had my own room with en-suite and my ‘last supper’ was a lovely bit of salmon so no complaints there then – it was hotter than hell mind you, or so I thought….

The morning of the operation is a lot like getting up early for a holiday when you’re a kid – just do what you’re told and nobody will get hurt in the bleary eyed flurry of people getting your name wrong and smiling from behind Covid masks. The moments of note were having to sign away all my belongings and provide an address to return them to should the worst come to the worst – I love our postman Steve so I’d hate to give him that emotional job plus I don’t think my bag would fit in our recycling bin. I was then socked up, asked about allergies 100 times and talked through the process before being wheeled in to the operating theatre. No banter today, game faces all round. I stared at the ceiling tiles and huge surgical lights as my life (i.e. images of my friends and family) scrolled rather than flashed before my eyes. I remember a tear beading out of my eye as I thought “hear goes nothing” and then, well, nothing. I’m dead now.

Juuuuuuust kidding. I am very much alive! The surgery, the surgeon told me, was the biggest he had ever undertaken and let me tell, he ain’t no Doogie Howser, M.D. The whole thing took nine hours and another surgeon had to be brought in to help but it was successful. When they got me opened up, the team could see that my pancreas was covered in melanoma and had reached out to my stomach – they both had to go. 90% of my stomach and 90% of my pancreas have gone along with my spleen, duo denum part of the portal vein and, strangely, a tour guide for Cheddar Gorge in 1994. They then cobbled together some sort of Frankenstein’s stomach from what was left, sealed me up and, presumably, went for a well-earned pint. Sadly, despite me yet again asking, they did not scrape out any fat – for future reference, I am not kidding!

Very, very late that night I woke up in the recovery room and was told that I was doing well before being transferred into the High Dependency (HDU), the place you want to be if you’ve just had major life changing surgery. As cosy as can be, propped up in a bed, air conditioned to be nice and cool and friendly, motherly nurses bringing you a water swab to make your mouth and lips wet. At least, that’s the perception at first but soon changes to being kept in a fridge like fresh cut meat and being just alive enough to be useful in case I’m needed as ‘Body A’ in a government cover up.

As I came in and out of my morphine fug over the coming hours and days there, obviously, hallucinations but a new experience to me was that of audio hallucinations. Treats that spooked me included every collection of objects in my periphery being a person (an oxygen cylinder next to a patient file convinced me it was a tiny detective for ages), Anthony Worral Thompson’s massive face smiling benevolently down at me from the corner, a Spanish Bear call Ignacio and a cat sitting in various places but always dashing off when I looked directly at it. The worst of these was a tiny black butterfly that crossed my vision and then landed on my knee before just doing its butterfly thing. I looked at the butterfly and then at the nurse and then back at the butterfly, unable to form words. She quickly came over and squashed it between her hands before looking me dead in the eye and saying, “it’s gone now and it won’t be coming back”. Or at least that’s how it went down in my head.

The audio hallucinations where just songs and snippets of films that just drifted in and out but there were songs I’d never heard before or Mariachi covers of Tom Jones songs and then you’d conversations going on in a room where there were four patients at most and three nurses. Throw in to that the position of my bay being sandwiched between two women with deteriorating mental health and it was a disorientating experience at least but I’d still pick that over Primark on a Saturday afternoon – Primark don’t have morphine. The sadness was that one woman was convinced that the doctors and nurses were in on a scam to feed her experimental drugs to kill her off so I would hear her bargaining with individual nurses saying “I won’t say anything, just throw them away, I just want to go home”. On the other side, the lady was a sweet individual who swung from being ever so grateful to just sobbing because she read somewhere that if you felt fine it meant you were just about to die – the nurse reassured her that it was a good sign but when Anthony Worral Thompson’s grinning at you it does funny stuff to your head.

For my part, I was just incredibly thirsty and started having semi-erotic fantasies about 7Up or Sprite where I sat in a paddling pool with the sticky drink being poured refreshingly into my mouth. Whenever a nurse or doctor spoke to me I just apologised profusely for everything up to and including surviving – in my addled brain this made me more of a burden than a simple cadaver. As you regain some sense of conscious thought (pause for “what you? Knobhead” comments from friends) you realise that you actually don’t know where you are, you’ve handed over all your belongings (including phone) and nobody who knows you knows where you are. And here’s the thing, for all my crazy experiences inside my head, there is a storm cloud of stress raging above my wife’s head who knows nothing about what’s happened. It is not, reasonably, anyone’s priority to run communications at this point, they want to keep me alive but that doesn’t mean this isn’t a hideous experience. Nevertheless, this being our story, it’s not without humour as my betrothed finally managed to get through to the lovely head nurse at the HDU who gave her an update and then offered to arrange for a surgeon to give her a call. So relieved was my wife that she didn’t quite hear the “I’ll hand you over to your husband” comment. I said hello like a drunk man trying to sound sober enough to get into a top club to which I heard a relieved and trying to remain composed wife saying “Oh hello, I’m Roland’s wife, Gemma”. There was a pause. I countered with “I know, I’m your husband, I was at the wedding”. I won’t go into the conversation that followed because morphine + emotions + tiredness = gibberish.

A few days later, following some serious bartering and threats between different ward managers I was moved to the Dawson ward where I was placed in a bay of four beds and found out that, yep, this was actually the hottest place outside hell. The following days were a steady flow of nurses, doctors and specialists checking me out putting drains and drips into me (at most I had 2 drains from my stomach cavity, 3 cannulas, one pic line, one central line and a tube down my nose into my stomach). I had done well (thank you) and they were clearly very proud of their work which I think they’re entitled to, my levels were good and I just needed to keep moving forwards at a steady rate. The heat was unavoidable, they were very sorry but Covid-19 meant fans were considered a risk of spreading infection so they had all been put in a breezy cupboard somewhere. In response, I did what any mature person would do and I sweated. Hard. Those that know me will now that I have healthy sweat glands (it’s main conversation opener) but for a man that’s climbed Coba in the midday Mexico sun I can honestly say I’ve never sweated so much. And remember, all I can use to help this is a tiny swab/sponge on the end of a stick to keep my gums moist as I was absolutely, positively nil by mouth.

God, this is going on a bit isn’t it? Do you want a break? Make a cuppa by all means or wipe your arse and finish this somewhere more comfortable.

Right, better? Good.

My three compatriots in the bay can be termed Mr scared end of lifer, Mr I know better than the nurses and Mr terrified overseas student trying to negotiate language and cultural barriers before having the cancerous part of his lung removed. We have not spoken a single word to each other and I think that suits us all fine because nobody is trying. The hallucinations had all but worn off but Ignacio came back for a visit and I thought the audio hallucinations had followed me until I realised that the Mr Knowsbetter was listening to live bootlegs of rap-rock concerts on a almost 24 hour loop and nobody else had seemed to notice. I slept, I ‘passed water’ into a bottle, I binge watched ‘Community’, I sweated (a lot), I missed my family, I scrolled through Facebook when I had the energy and eventually, day by day, I started to feel like me again. First, I could stand up on my Bambi legs, then I could reply to messages, then hold a conversation on the phone and by today – a mere 10 days after the operation – I have all my cables and tubes out, I have put on grown up clothes and I have felt my brain whirr like it hasn’t done for, well, 10 days. Most importantly, I can drink, and that airport style cup of apple juice was rank but like Dirty Donna at 3.00am on a Sunday morning it hit the spot (for clarity, a Dirty Donna is reference to a kebab, not a specific prostitute).

One thing being that wiped out for that long does is give you time to think and observe and there’s some stuff about life rattling around my noodle for another time. What I have observed though is that at my lowest points I am ashamed to admit that I got quite angry at trying at not being able to understand the nurses. The nurses at King’s College Hospital are a wonderful mix of African, Asian and South/Central American with a few others thrown in for good measure and they have all shown me nothing but kindness. However, when it’s hot, there’s no air, she’s wearing a mask, it’s 2.00am and the nurse is saying “breed through your nose, you need more hair in your lung” in a thick Caribbean accent I found myself snapping “I feel like you want me to breath and I feel like I’m breathing but I don’t understand you”.

It brought me to a realisation that if you get to a riper point in life than I before having the misfortune to spend any time in hospital then it must be absolutely terrifying to have all these medical terms, accents and changes to long standing routines thrown at you. I think I will write a survivor’s guide to hospital as a future piece for this blog but not until I get out otherwise it won’t hold a lot of gravitas. It also give me some insight in to what it must be like if English isn’t your first language as a patient and suddenly you’re faced with having a lot of interrogation, unusual linguistics and machines constantly beeping. It’s disorientating for sure and could be improved but that won’t happen without investment and, well, insert your own thought on how the NHS is being funded and run right now. I do think improved communication would free up beds quicker and probably save lives though (spoken like a true Change Manager or whatever my job used to be before I tried my hand at being tragic for a living).

So, that’s it, bang up to date I think. There will be bits I’ve forgotten due to the drugs and messed up sleep pattern but you get the jist. Oh, one more thing actually, before I go, when the doctors told me they had got everything out they said I seemed a bit underwhelmed but put it down to the drugs. They mentioned it on a second day and still I didn’t respond appropriately to which my excellent specialist said, so as to be clear, “We’ve got all the cancer out Mr Monger, at this moment in time you are cancer free”. Kinda stops you in your tracks that, doesn’t it? What with all the being alive but without organs stuff I’d forgotten about that but Cancer free eh? Not bad. I shall celebrate tonight with chicken soup and two (count ‘em) yoghurts. One for me, one for Anthony Worral Thompson.

THE NEW NORMAL #48 – RUN, FATBOY, RUN

I have always made a point in life of not running for trains or last orders or, well, anything really. The theory is that if I’m not meant to be on that bus then it’s not meant to be and this has served me well in avoiding at least one tube train bombing and numerous other benefits. So, it shouldn’t have come as a surprise this week when, during a game of catch, my nearly six year old boy exclaimed “Daddy, I didn’t know you could do that” when I ran to catch a ball. It was a bit of a wake-up call at my lack of mobility in the preceding years but also chimed in with a phone call I’d had the same morning but for that to make sense I need to rewind slightly to catch you up.

Following the good news that my lungs aren’t cancerous, things started to move pretty quickly and before I could even contemplate a celebratory glass of champers I was booked in for major surgery in London. The deal I was presented with was either to opt out of the surgery and hope that immunotherapy or chemotherapy do a job on the tumour currently residing on my pancreas or I can have surgery to remove my pancreas, my bile duct, my spleen, my duodenum and the pesky tumour. Normally, they would remove my gall bladder too but regular readers will remember that I already had that whipped out five years ago so that should save time. I have, of course, opted for the surgery but not lightly because there are a few, frankly, terrifying issues which I’ll list for you here:

  1. Death – it’s a risk with every surgery but this one has one of the highest mortality rates so once I go under there may be no coming back and that really makes you swallow hard. And pee a little.
  2. Surgery – the surgery takes around seven hours and is a pretty gruelling experience for the body so there are a number of tests to be done on heart and lungs before I can be considered ready.
  3. No dice – they could put me under, open me up and then decide that there’s nothing doing with a tumour that is wrapped around a number of complex and important body parts. This would still require a couple of days wait in hospital to make sure I’d been stitched back up properly but otherwise nothing more positive.
  4. The wait – assuming all goes well, I will be spending two weeks recovering in hospital as they check on the removal of various tubes and reconnection of whatever organs I have left. Normally this would be tedious but due to the operation happening in London and this being, well, 2020, I am also allowed NO VISITORS for the entire two weeks (thanks Covid-19, you dick). This will be the single longest time I’ve been away from my family since I’ve had a family of my own and for a man who developed separation anxiety back in 2016 that is enough to make a tiny part of me want to opt out of the surgery altogether.

And that kind of brings you up to date with what’s been going on so I can get back to the running thread of this particular chapter. You see, this particular surgery (known in the medical world as total pancreatectomy which I can only ever say like Bill and Ted) is akin to running a marathon in terms of the pressure and strain it puts on your body. Now, don’t worry, I won’t be dressing up in a novelty dinosaur suit before entering the operating theatre or shitting in a drain like Paula Radcliffe (not again, anyway), but I do need to be in relatively good shape. It’s mainly the lungs and heart that have to have the capacity to cope with this additional pressure so I’m having my tests and hopefully will be good to go. Nevertheless, in typical ‘me’ style I’ll be running this particular marathon (or Snickers for the American audience members) lying naked on a bed, passed out and surrounded by strangers in masks – it’s like Vanilla Sky but less dull.

Sure, there are downsides, but if everything goes according to plan then I will get to cross the finish line of this very personal marathon at the end of August, see the end of summer and see my little boy start a second year of school which is something I didn’t think would happen at the start of 2020. In fact, if things are as good as they can be, then I could be in for a few more years of school runs and parents evenings which I genuinely can’t wait for so I’m hoping to stay match fit. There will be changes to my life such as needing to take enzymes to break down food with every meal and antibiotics every day to cover for what my spleen used to do but these are small prices to pay (unless the Americans take over the NHS of course).

This will be the last blog post before I travel up to London for the surgery and, to be perfectly frank, I’m more than a little bit scared of the whole process and what state I’ll be in when I wake. Or if I wake up. This latter point is something that people will not entertain when I mention it out loud but this is the most serious operation I’ve ever had and, hopefully, the most serious one I’ll ever have so you have to consider this as an option. I mean, if the last thing I ever say to my son is “see you in two weeks, I’ll bring you back a Happy Meal” then that isn’t exactly the lasting legacy anyone wants to leave, is it? On the flip side, how do you say, “maybe goodbye, maybe not” to a five-year-old who doesn’t understand the difference between mayonnaise and yoghurt and who’s favourite two words are ‘poop’ and ‘wiener’?

I guess what I’m trying to say in a roundabout way is that this is the bit in Run Fatboy Run where Simon Pegg hits the wall in his race and you’re not quite sure if he’ll make it through (except you are because this is a film and the step dad is, as always, a massive douche bag). The trouble is this isn’t a film. This is real life in 2020 and I think we can all agree that the one thing 2020 is good at is pulling a surprise or two out of the big. I mean, Christ, I liked more than one of Piers Morgan’s tweets the other day, so anything is possible. Anything at all. So maybe see you soon and maybe not, has anybody got a coin I can toss…..?