THE NEW NORMAL #59 – THE NEW, NEW NORMAL

I have started writing this blog a few times in recent weeks, but the ideas have been hard to catch hold of. The main reason for writing this thing has always been to get the thoughts out of my head and down on to paper/a screen to give me more space and peace from day to day. Sometimes, however, thoughts can be like the shiny pieces of paper at the end of the Crystal Maze and, no matter how frantically you grab at the air, you can’t seem to pin anything down. And then, even if you do grab a ticket, it turns out to be a silver one instead of a gold one (in real life, this is equivalent of spending time thinking about what it would be like if one of your appendages just flailed about wildly when you were happy like a dog’s tail instead of something more important and pressing).

These last few weeks, the thoughts have fluttered around my head and I’ve had to lean in to the chaos a little and just let the thoughts swirl – I don’t have the energy to grab at those golden tickets. I mean this in both a figurative and literal sense as my ‘arthritic symptoms’ mean that raising my arms beyond the top of my head is a very slow and deliberate process that makes me look like a need some WD40 applied to my joints – a la the original Tick-Tock in the Return to Oz (check it out, Gen Z). Similarly, my knees behave like they weren’t designed to bend, and it can take me two or three attempts to get out of a chair which feels like something that’s arrived in my life about 30 years too early. So, Richard O’Brien, start your fans and blow your whistle if you wish, but I’ll just take whatever tickets fall into my romper suit as I slump in the corner for now, thanks.

I started writing this latest version the day after my eleventeenth treatment (I’ve wilfully lost count now) because treatment is always something that brings things into sharper focus – a healthy dose of perspective and context will usually sort things out. The sun was shining, the hospital felt busier than it had for a while, and I wasn’t even wearing a coat, so all felt well. And it was. That sounded like a set up for disaster or turmoil, but it wasn’t, it really wasn’t. I checked in, weighed myself and got a cannula fitted as normal and it felt as normal and routine as taking your car for its MOT or getting your hair cut. Which is weird, right? I mean, it shouldn’t feel normal to sit and have expensive drugs pumped into your hand once a month in the hope that those drugs are helping your body deal with any last remnants of cancer that are floating around your body, should it?

The funny thing is, it’s not just me that feels this way. I was alone in the treatment bay for about half an hour before another regular came in and, before she had even sat down, she was telling her nurse about issues with the refit of her kitchen at home. They swapped stories of DIY disasters and I chipped in with my own woes of a house painter who seems determined to not only buy paint from Harrods but also not deliver that paint or, indeed, paint our house with it. We three people were bound only by our proximity to cancer and our geographical location but now we had completed the triangle with our DIY woes and it was, well, normal.

I often joke with the nurses that I look forward to treatment because it is a rare moment of calm for me in a house with four children, three cats, a Labrador puppy and, for now, my home office. The sad thing is that this not so much of a joke anymore and although there is a twinkle on the horizon that looks like the end of treatment, I’m not sure what I’m going to do with myself after this period. I am now due to have another PET-CT scan (third in Plymouth and fourth in total) to play spot-the-difference with my insides again and, if everything is stable, we’ll start to talk about thinking about possibly looking at maybe, perhaps tapering off the immunotherapy and going back to three monthly scans. And I’m OK either way, strangely, because at least the immunotherapy feels like I am proactively doing something rather than dragging myself from one day to the next like a climber on a cliff face going sideways but rarely upwards and never anywhere quickly.

As a side note, two slightly unusual things happened after my immunotherapy treatment which are worthy of note. Firstly, upon leaving the Fal Ward of Derriford Hospital where all the immunotherapy treatment is administered, I weaved my way through the corridors and then turned to climb the two flights of stairs to the exit. As soon as I put my right foot on the first step and did the most straightforward thing of starting to climb the stairs, my knee gave way like it was made of tissue paper filled with wet pasta. A kindly nurse (most of them are) was passing and helped me up – making me feel like a helpless child and incredibly old all at the same time.

The strength in my knee returned fairly quickly as I was marched out of the hospital but then I had to renegotiate the one-way system back into the hospital to pay for my parking. You see, one perk of visiting oncology is that your parking fee is capped at £1.20 regardless of the length of your stay but this time the parking desk clerk refused to take my card saying, with glee, “New rules! Free parking for Oncology patients”. I thanked her and wished her a great weekend as I walked away. Then one of those shiny tickets fluttered through my mind as I had recently read about NHS staff having to pay for their parking again now that the pandemic is easing off. It feels wrong that I am getting free parking when those that are working so hard to keep me (and others) alive have to pay. Then again, there are those suffering with cancer in worse financial positions than I am so its good for them. Maybe I will just donate my parking savings to charity or something, just to appease my middle-class guilt.

In amongst all this cancery normality there has been all the other normal normality too – it’s a whole lot of normal. I’ve been to two different pubs (outside only), a family barbecue, seen siblings and nieces that I hadn’t laid eye on (outside of Zoom) since 2020 and even went in to work for a day – something I thought I would never do again just over a year ago. I have walked the dog (not as much as my wife but he’s her dog really), I’ve built a sandcastle with my son, I have marvelled at the growth of plants as Spring finally arrived and for brief, fleeting moments I have forgotten about cancer altogether. But then, sure as eggs is eggs, an off-white letter arrives from the hospital to inform me of a future appointment or give me the notes of a previous discussion with a medical professional, so I take a deep breath and go again. Again.  

My latest challenge largely hinges around my diabetes which I’m still battling with. ‘Battling’ is a strong word really but it is a niggly little bastard to control – like a small yappy rescue dog with bad habits and an unpredictable nature. At the moment, my waking blood glucose level is within the acceptable range and that’s really positive but it’s all downhill from there. My glucose levels rise steadily throughout the day and don’t seem to correspond particularly directly with my diet as well as not reacting particularly well to any changes in insulin doses. None of this is helped, of course, by the fact that a number of the tablets I’m taking (currently on nine different medications for those keeping count) are known to cause increases in blood glucose levels.

The good folk in the Endocrinology team are helping me and part of this means keeping a closer eye on what I eat, what my blood glucose levels are and what my blood pressure is. The theory is that if I write down everything I eat (literally down to the calorific value of each slice of bread), check my bloods before and after each meal and carefully adjust my insulin then we might be able to pinpoint what is causing the problem. The blood pressure issue comes in to play because one of my drugs (fludrocortisone) is there to increase my blood pressure to a healthy level and avoid any repeats of the ‘black out period’ that I was less than fond of. So, in order to come off this tablet which increases my blood glucose levels, I need to prove that I am in possession of a healthy blood pressure level which means I have buggered up my online shopping algorithms but purchasing a blood pressure monitor – I’m now getting adverts for ‘blue pills’ and ‘special pants’ wherever I look.

After my wife and son showed themselves to have a perfectly good and proper blood pressure, I chanced my arm (literally) and found my blood pressure to be a fair way lower than it needed to be. It is frustrating, to say the least, because all my life I’ve had a low heart rate and low blood pressure and that’s been seen as a good thing but now, because everyone is the same in the eyes of the medical profession, I have to get my blood pressure up to a point that I’m not sure it has ever been at in the past. And no, I’m not going to fudge the numbers by running a marathon on a treadmill while watching a Nigel Farage monologue on a loop and quenching my thirst with a bottle of table salt – that way leads to more blackouts and to me having to get a new TV due to severe table salt damage. So I will keep tweaking, adjusting and keeping my fingers crossed because that’s pretty much all I can do.

Then again, there are elements of normality that do their best to raise the blood pressure without requiring any substance abuse. Right now, we have a house painter who has done a runner with our paint and our money, a shower that is determined to leak through in to our kitchen no matter what we do, a garden that won’t stop growing things where we don’t want and vice versa, a new front door that is stuck in a supply line somewhere in Europe (because Brexit x COVID = everything stops) and someone in our life who has decided that a new sofa is more important than paying towards the upbringing of his children. For 90% of the time, I can remain calm, maintain my perspective and put things into context but, ironically, it is that 10% of the time when I forget about the cancer and all I’ve been through, that the everyday frustrations get to me, and I don’t think that will ever go.

I normally try to end these posts on some pithy insight (or so I like to think) but I’m struggling for one at the moment. Not because I’m particularly low or at a loss for words but because everything is so bloody normal. I’m not craving anything more exciting, believe you me, but when your normal has become so FUBAR (to borrow a Second World War acronym from the Yanks) then normal normal becomes hard to acclimatise too. I guess it’s like joining the Navy after growingup in a land-locked city (Sheffield, for instance) only to retire from being a seaman (chortle) and not be sure how to live in accommodation that doesn’t move around or constantly smell wet and salty (OK, I’ll stop now).

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