THE NEW NORMAL #43 – FOUR DAYS IN MAY

It’s been a hell of a few days and I want to tell you what’s being going on but there’s a lot to take in so I want to give you an opportunity to make a cuppa, empty your bladder and generally get comfortable. All done? Did you flush? Wash your hands? Go back and wash your hands……

Right, we’re going to do this day by day, diary style, so buckle in for a wild ride.

Day 1

Having not left our sleepy Cornish (apart from a couple of hospital visits) for over two months, a road trip to London with my wife seemed dazzlingly exciting on the face of it but the destination of a hospital I’d never been to before did not fill us with glee. Still, we were looking forward to seeing all the post-apocalyptic scenes in London and watching the rotting bodies of country folk being picked over by vultures at the side of the A303. Alas, our trip was more akin to a country drive while England are playing in a World Cup Final and the scenes in London were basically us pointing at people saying “well they’re not wearing a face mask and that’s never two metres”. Nevertheless, we made it to our hide-out (aka my Uncle’s flat in Highgate) and dined like feral beasts on houmous, watched a rerun of Captain Ron and found out that, in my wife’s mind, Dennis Quaid and Kurt Russell are interchangeable. We went to bed without really acknowledging or discussing how nervous we both were about the day ahead of us.

Day 2

This was the big one. In case you haven’t been paying attention, we were in London so that the good people at Guy’s & St Thomas’ Hospital could scan me and chat to me about surgery options. Confusingly, all of this was to take place at King’s College Hospital in South London and this meant the next level of our adventure would feature the pair of us trying to drive across London without entering the Congestion charge zone – thus saving the princely sum of £11.50. We managed it, just, by rudely ignoring the sat nav’s attempts to send us in to the ‘zone of doom’ like pre-pubescent contestants on 80s game show ‘Knightmare’ – there was a lot of “Turn left. NO! Don’t turn left” and “Is that a road or a bus lane?”. Due to the new rules restricting outpatients being accompanied into the hospital my wife was due to social distance in my brother’s garden and so I strapped on a face mask and started my adventure.

The first challenge was to find the home of Nuclear Medicine which, fittingly, was in the basement and, once I had negotiated checking in through a face mask, I found myself in a confusing waiting room. On the wall there was a sign imploring everyone to remain 2 metres or 6 feet apart but in the waiting room, there were 6 chairs and each one of them was surrounded by a yellow and black piece of tape in a perfect square. So far so cautious but the chairs we’re placed about two feet apart so, unless they were supposed to be the barriers that you stood behind as you stared awkwardly at the floor, something wasn’t quite joining up. Nevertheless, I was quickly ushered through to a room that can only be described as a large changing room from the kind of shop that I neither have the bank balance or the waistline to frequent.

The cannula went in first time (I know, right?) and then they administered the radioactive tracer which was as I expected from last time but this time I was asked to stay in this tiny room in a dentist’s chair with the lights out for an hour. Now, I’m relatively mentally robust but ask anyone to sit staring at a blank wall in the half light of a basement cubicle as nuclear medicine works its way through every part of your body and you’re surrounded by almost complete silence then you have to expect your mind to wander to some odd places (mine wondered to ‘whatever happened to Terry Nutkins’ and ‘are my feet touching the foot rest or hovering millimetres above it?’). The hour went surprisingly quickly and then there I was, lying down in the scanner room once again feeling like a pro and answering all the questions before they’d finished asking them. What I wasn’t prepared for was that PET CT scans are done a little differently in the big smoke. Anally. Just kidding, no, the big difference here is that they didn’t trust me to stay still during the scan so I had my feet tied together, my head strapped in to a brace and was then asked to fold my arms across my chest before they wrapped my abdomen in a giant Velcro strap. Essentially, I looked like a vampire burrito being passed slowly through a giant doughnut for 40 minutes and, honestly, it was kind of relaxing to just have no choice about movement other than to be shunted slowly forwards like a knackered printer struggling with a double-sided document.

After that two-hour ordeal you’d expect a break, right? Nope, I had 15 minutes to navigate my way to other side of the hospital and up two floors via weirdly quiet corridors populated only by stressed looking people wearing face masks and decorated with hundreds of hand drawn rainbows donated by local children. Sobering stuff. Anyway, I made it in time and then had my second cannula of the day fitted ready for the more run of the mill CT scan – ironically by a Australian nurse who had trained at the University of Exeter and had had a placement at my normal hangout, Derriford Hospital. Small world, eh? No great excitements here other than the fact that Aussie nurse #1 cleverly switched with Aussie nurse #2 while I was having my scan and I nearly didn’t notice due to the face masks but the hair colour gave it away – unless I was being scanned for longer than I thought and she snuck in a quick hair dye in between telling me to hold my breath and then breathe again.

At around 2.30pm I then got a break from the scanning and I managed to find a spare bit of wall behind a bike rack on which to sit and do my lunch time insulin shot before eating a tepid cheese roll. As I sat there watching the world go by, I wondered what stories were being carried around by all these people braving the outside world during the pandemic just to get to the hospital. So many faces hidden by face masks, so many nervous pairs of eyes and so much anxiety floating around above heads like little black clouds. There was still laughter though – particularly from the woman being ferried around in a wheelchair by a charming porter who was loving every minute of the ride and every word of flirtation.

Right, lunch break over, time for the third and final act of this play. This was the big one, meeting with the consultant who was brave enough to even consider whipping out my pancreas to find out what was involved in the whole process (quite a lot, it turns out). The chap seemed nice enough behind his face mask and he delivered the following break down of the risks to the total pancreatectomy;

  • It might not work – this is a given with any surgery but with the total pancreatectomy there is the highest chance of mortality with a 2-4% possibility risk of death so that’s a sobering starting point.
  • What’s inside matters – no matter how many scans they do, there is still a chance that when they slice my open they could take a look and decide it’s too risky. Given the proximity of the pancreas to portal vein which feeds blood to the liver, any twists and turns inside mean I could come round with the medical equivalent of having put a condom on only to find your wife has fallen asleep.
  • Things can go wrong – considering they have to remove my spleen along with my pancreas (and normally my gall bladder) there is a high risk of infection which could land me up in the ICU which is, of course, where Covid-19 lives.
  • This is life changing – even if the 5 hour surgery goes well and I get out of the London hospital after the average 14 night recovery stay, then I will be required to take special enzyme tablets and antibiotics for the rest of my days. More tablets then, a small price to pay.

Then he hit me with the big BUT. You see, he’d had the results of the CT scan back already and was a little concerned about some markings on my lungs which, if they turn out to be cancerous, would make any kind of surgery pointless and an unnecessary faff. He was running through the caveats while panic swirled around my head so things weren’t going in particularly well but the upshot is that if he compares them to my previous scans next week and there’s no change then we’re good to go. However, if there is growth in the lungs then he’s out and we’re back to the drawing board in terms of options so it is really, really sucky timing for a Bank Holiday.

The drive home was delightfully traffic free but we still had to talk it through and my wife, as always, pulled the optimism out of the bag by pointing out that I’d had another CT scan very recently which had not rung any alarm bells for my normal consultant so let’s cling on to that one shall we? For dear life.

Day 3

This day wasn’t originally going to make the cut because it basically consisted of an emotional reunion with my little boy and going through the car wash. Then again, I received a call from the Dr in London who had originally given me this surgical glimmer of hope and she was ringing with yet another flicker. It seems a new drug has just been approved that, for 1 in 100 melanoma patients, has an “exquisite” (her word, not mine) success rate in terms of tackling tumours but it depends entirely on having the right gene. So, they’re going to test me and see if I qualify based on my genes which would mean I could have that treatment, avoid the surgery and keep my pancreas. And, most excitingly, avoid spending 2 weeks in a hospital hundreds of miles away from home where visitors are not currently allowed.

Day 4

It says something about your life when having your big toenail pulled off under local anaesthetic to check what’s underneath it is the least worrying thing about your week. Nevertheless, that’s where I’m at as I’ve had this procedure twice before and I know exactly what to expect (i.e. two long needles being pushed in to my toe from the tip end to anaesthetise it followed by the kind of action you normally associate with the removal of a wisdom tooth but at the wrong end of your body). Needless to say, the feeling of needle against bone doesn’t get any more fun but at least when you know what’s coming you can prepare your grimace in advance. The good news is that on removal of the toenail, the surgeon’s suspicions were confirmed – the mark under my nail was just haemorrhage without even a hint of melanoma. All together now – “Phew”.

The big battle going on in my head, however, is just how much of the information I’ve been given this week do I want to retain when so much of it is potentially terrifying, life changing and emotionally turbulent. They say knowledge is power but they also say that ignorance is bliss, so I need to find some kind of perfect middle ground if I’m going to survive. So, it’s been a bit of a week but, all things considered, I think it went pretty well. I even managed to trim my neighbour’s bush this morning although my wife thinks I left it a bit long on top.

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