THE NEW NORMAL #47 – ALL THE FUN OF THE FAIR

Throughout my ‘cancer journey’ there have been numerous references to normally fun activities which, when put together, make up something of a depressing fun fair. There’s the emotional rollercoaster, the medical merry go round, the diagnosis coconut shy and the helter skelter of mental health for starters and that doesn’t even account for the house of horrors that is the inside of my body these days (or the hall of mirrors that is the outside of my body for that matter). The last few weeks have seen a few new exciting rides added to the fair so join the queue, collect your tokens and prepare to be inappropriately touched by the carnival folk as they check that you are safely secured in to the ride.

First of all we had the Cortisol Cascades; a ride that lowers you slowly and gradually into a state of extreme lethargy and painful joints along with a dislike for food and an inability to keep food inside you. Stepping off the analogy wagon for a moment, this was a bit of a serious moment and quite a significant turning point. Essentially, the immunotherapy has really started to work through the gears and, while that means that my tumour is now taking a serious battering, so are some of my more well meaning bodily functions. One such function is that of my adrenalin glands which, unbeknownst to me, have been kindly producing cortisol for me every day of my life and we need cortisol to help us balance hormone levels and deal with stress as well as having enough energy to cope with the day. A blood test showed that my morning cortisol levels were at 10% of where they should be which, considering the levels go down during the day, sort of explained why I was struggling to muster any energy, enthusiasm or appetite. It was a bit like turning up to the starting tape of the London Marathon after a 3-day bender with Dylan Moran, Oliver Reed and Amy Winehouse and wondering why you could barely walk, let alone run.

Fortunately for me and my adrenal glands, I still live in a country with a National Health Service (for now) and once my GP and Oncologist spotted this anomaly in my blood sample, they prescribed me some new drugs which did just the trick. I genuinely felt like an inflatable Santa on 1st December who, having spent the year deflated and useless in the cupboard under the stairs, was now immediately fully inflated and smiling maniacally at passers by while Christmas songs played (odd for July but these are odd times we live in). I felt better than I had done in months with my appetite back, energy to spare and neither food nor booze made me nauseous anymore so there was much rejoicing and we purchased a paddling pool to mark the occasion.

The next ride to be added was one of those kiddy rides where you get in a small black cab and get taken at a snail’s pace through the imaginary and geographically incorrect streets of London. For the second time in 2020, my long suffering wife and I had to go to London because the medical facilities in Devon and Cornwall weren’t quite what I needed and so it was that we found ourselves flying up the A303, waving at Stone Henge and lamenting the loss of the Lucozade sign to find ourselves sitting in a park in West London. Here, we had the most socially distanced of catch ups with a couple of friends – all of us glad to see a different face or two since being under lockdown rules – before heading for bed after a small drive further North and negotiating my uncle’s disastrous plumbing in his vacant flat.

The following morning we took a whistlestop tour of my old stomping grounds (Camden, Holloway Road, Islington) on our way to Guy’s Hospital where I found myself going from driving my car to being naked apart from pants in just under 20 minutes – this was legitimate as part of preparing for procedure, I didn’t just rock up and strip naked like some errant country bumpkin unaware of social etiquette. The reason for my visit was the pesky nodules on my lungs didn’t seem to be going anywhere so they wanted to sneak a needle in via my back, take a little sample and then sneak out, all guided by the live scan of my body provided by the CT scanner and with me under local anaesthetic – this is known as a CT guided biopsy.

The plan was to get in at 8.00am, strip naked and get cannulised (so far so good), before the usual spiel from the surgeons who like to go in to a lot of details to both scare and impress you in equal measure – they must be a nightmare on first dates but the flashy car and “I’m a surgeon” line probably makes up for it. By the point I was lying face down wearing nothing but pants and a face mask (I know, a strong look for date night, right?) and being fed into the all too familiar giant Polo there were at least 8 people milling about me from nurses and radiologists to anaesthetists and surgeons – all of them wearing lead aprons to protect them from the radiation that’s about to spin around me. It’s disconcerting enough for me, a 40-year-old adult of sorts, but I can’t imagine what this experience is like for someone elderly and frail or a small child who can barely say anaesthetist let alone spell it. No amount of banter or kind words makes this feel any less brutal as they place stickers on your back to mark out the area where they want to insert the exploratory needle.

Then comes the waiting. For fifteen minutes that felt like fifty I lay, face down, the only sound I could hear was my own breathing, I didn’t move and after a while I thought they might have forgotten about me. Then there was the sound of a door opening and everyone coming back into the room which didn’t feel like it was what I should have been expecting so my heart sank a little. Then the surgeon told me something that I hadn’t even thought about hoping for; the nodules on my lung had shrunk. In the last scan they were around 1cm long but now there were less than 4mm long and that means two things; firstly, the nodules were too small to take a biopsy and, secondly, shrinking is not something that cancer just does on it’s own.

I was in a bit of a daze as I’m not accustomed to news this good but, as I was detangled and ushered out of the CT scan room, I was essentially told that there was no evidence of malignancy on my lung and, therefore, there is nothing stopping the surgery on my pancreas from going ahead as soon as the surgeons are ready and available. That’s it. No waiting for scan or biopsy results, no rare problems that seemingly apply only to me and no ifs, buts or maybes. I was discharged quicker than you can say ‘thanks for not sticking a needle through my back and into my lungs’ and then we drove happily back to Cornwall eating leftover pizza and generally just feeling a little bit lucky.

I have to be careful though, I’ve learned that. This good news was like winning on the claw machine and getting some small cuddly toy but all that does is qualify us for a go on the rifle range with the big money prizes are. The fact that the cancer hasn’t spread is fantastic, don’t get me wrong, but there is still a grumpy old tumour clinging on to my pancreas and that’s the end game here. I’m also acutely aware that for every bit of good news and good fortune that gets handed out in this cancer game there is just as much if not more bad luck being handed out to other people. I guess, in that way, we’re having a ride on the dodgems right now. For every nifty bit of steering and narrow avoidance there’s someone on the other side of the track getting absolutely battered by some dick in a wispy moustache and a beanie (the beanie has cancer written on the front). For now, I have one more round of treatment to go and then we wait for a surgery date which will, I’m sure, bring a whole new world of fun to write about.

2 thoughts on “THE NEW NORMAL #47 – ALL THE FUN OF THE FAIR

  1. I really looked forward to this read, as I was hoping, in a big way, that it was going to be good news for you.
    I totally understand, with good news, often come not so good.
    But I wish you tons of luck with you next Operation.
    I think about you Roland, Gemma & the Children often. Love & hugs Jane & Mike x x x

    Like

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