THE NEW NORMAL #62 – BE CAREFUL WHAT YOU WISH FOR

Today, I once again found myself laid out on a mechanical table about to fed back and forth through a giant hoop for the best part of an hour in order to find out if, as my wife put it, “my insides are behaving”. There was nothing new about this experience compared to previous encounters other than the Filipino male nurse who gave such a rapid delivery of the procedural description that he must surely have a side-line reading out the terms and conditions at the end of radio adverts for pay day loans. I won’t know the results for a few days (or weeks if previous experience is anything to go by) but at least the scan is done so my part is done and all I can do is wait.

The reason for this blog entry in particular is to discuss something a little more philosophical. You see, between arriving at the hospital and being discharged, you have around 150 minutes to fill and most of that is just sitting in a low-lit room with your own thoughts for company (plus the inane ramblings and terrible music of Radio 1 inexplicably blaring out in a space that is specifically demarked for ‘relaxation’). Now, I don’t know how your head works but my mind operates a little bit like a dog – if you don’t keep it on a short leash with a sense of purpose it has tendency to run off and roll around in fox shit and seagull carcases. Metaphorical fox shit and seagull carcases, to be clear. Today’s mind meander was veering off into some unpleasant places so I hooked on the lead and we walked, with purpose, towards a creative project that I’m toying with; describing the afterlife.

Alright, I hear you; “bloody hell Monger, this is a bit much isn’t it? I mean, have you found religion or just lost your ruddy marbles? Or both!?”. Well, I’m not religious, never have been. I’m not christened, never went to Sunday school and I can spend all day picking plot holes in the bible. However, I’ve got no beef with people of faith and the solace and comfort it gives them so I’m not here to pick a fight. What does intrigue me, however, is what a positive afterlife experience might look like and so this was the thought I tried to occupy my mind with as I was shunted back and forth in my vampiric position.

The trouble was, every time I closed my eyes to try picturing my idyll, my perfect afterlife, the sublime life beyond, all I could picture were fragments of my life now. Obviously, I would lose the cancer elements, I could live without commuting and the general political and environmental state of the world is pretty shoddy but that’s just part of it. This weekend alone I have gone blackberry picking with my wife, son and dog, I have sat with a hot cup of tea staring out to sea from my lounge and I’ve listened to sublime music as well as watching some excellent films. It might not sound a thrill a minute but I’ve never been an adrenaline junkie and I’m more attracted to the interesting, the unusual and the simply beautiful (and beautifully simple).

This raised two questions; firstly, was I already in ‘heaven’? Secondly, have all my wishes already come true and, if so, is this the life I really wished for? It brought to mind those stories where the protagonist gets three wishes but they wish greedily and there are ‘consequences’. I mean, I always wanted to write a book and now I have but the subject matter is my battle with cancer, I always wanted to live by the sea but now that could all be taken away and for my entire adult life I have wanted to be thinner and I have now achieved that but at the cost of a variety of internal organs (or offal). So maybe, I thought as the machine beeped and whirred around me, it is time to stop wishing and start living in the now a little more. It is a realisation that I come to from time to time (I’m not very good at living in the now) but with the twin epiphany that my personal idea of ‘heaven’ is pretty much what I have now, I feel a little more confident treating the present as a gift (sorry, every now and then a little meme slips out, it’s a side effect of one of my pills. Probably).

In other news of a less philosophical nature, I’m still chasing down the offer of some physiotherapy which, ironically, has been passed like a baton from one hospital to another medical centre and then on to a health centre. I’m nailing the bionic arm element of having Type 3C diabetes although my blood glucose levels are still more erratic than I’d like them to be to keep my future body as healthy as can be. I’m starting to return to ‘the office’ a bit which brings its own new raft of anxieties about how robust my immune system is – it has only been tested around my family and a handful of friends thus far so I don’t know how it will fare around swarms of students in poorly ventilated and cramped campus buildings. But I’ve got a mask, a bunch of pills, a good home working set up and some extraordinarily supportive colleagues, so I reckon I’ll make it through to Christmas at least!

So, to wrap up, there isn’t a huge amount going on outside of what is our ‘new normal’ – I have good days, bad days, I measure out my tablets, I spend more time than I’d like on the toilet, I keep the worst of it away from my son and try not to over burden those I love (although it doesn’t seem to stop them all worrying about me which is, in turn, a cause for concern). On the other hand, I have some fairly huge scan results coming up and I’m mentally designing the interior décor for my own personal paradise like some sort of English Ted Danson in a West Country version of ‘the Good Place’ (spoiler – there’s a lot of cider and fudge).

Oh, and there’s a book. My book, to be precise. ‘My Big Toe is Killing Me’ has been printed in to 1,000 copies which are currently clogging up my hall prior to the book’s official release on 15th October. It feels both amazing and daunting to have this slice of my life in my hands to share with the world but if ever I doubt the reason behind doing it, I just need to remind myself of the dedication in the front of the book; For Jake. It’s that simple really; find your slice of heaven, hold on to it, nurture it and, above all else, enjoy it for as long as it lasts.

***STOP PRESS***STOP PRESS***STOP PRESS***STOP PRESS***STOP PRESS***STOP PRESS***

Surprise surprise cancer fans, the results came in within 24 hours! I was fully expecting a call from my Oncology team today as my usual pre-treatment check-up, but they fairly swiftly pulled the ‘we’ve got your scan results, do you want to hear them’ wild card. To which I said ‘no thanks, I’d rather live in a world of uncertainty and constant worry if it’s all the same to you’… Of course, I didn’t, and the upshot was a predictably mixed bag. Essentially, below my diaphragm everything is fine and from my jaw up everything is fine (this latter part is particularly encouraging considering the blurry shape they saw behind my eyes in the last scan).

What they can see is a fair few ‘shapes’ in and around my lungs which may or may not be sarcoid and, more worryingly, something in the right side of my neck and collar bone. This is what is called a potentially ‘minor progression’ but at this stage they are not sure if it is cancerous or simply some inflammation of my lymph nodes in that area. The thing is that my particular combination of ailments mixed with my particular cocktail of medication and my particularly unusual physiology makes me, well, a particularly peculiar patient. This means that no single person can look at my situation and make a clear assessment of what to do next, it needs a team of individual specialists. Essentially, imagine I’m Lewis Hamilton’s car and he’s come a cropper so he’s coming into the pit lane for some attention – the tyre guys will do their bit, the spoiler folk will sort that bit out and somebody will wipe Lewis’ visor down (presumably with Bollinger or something equally extravagant). The point is, my car/body is in the pit lane and they’ve taken a photo so they can work out what the problems are but everybody needs to get together to collate their diagnoses and then tell me what’s good, what’s bad and what to do next. Ironically, despite there being absolutely no pain in my neck, this is a massive pain in the neck.

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