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).

THE NEW NORMAL #58 – TUESDAY, BLOODY TUESDAY

I have long held the belief that Tuesday is the worst day of the week. I hate Tuesdays. Those that have had the pleasure/misfortune to work with me over the years will know that my theory goes as follows;

Monday – Left over adrenalin from the weekend and the excitement of a fresh week ahead.

Tuesday – nothing, too far from the weekend to come and the weekend just gone has drifted away.

Wednesday – Hump Day! Nothing scientific but it sounds good.

Thursday – the new Friday.

Friday – the old Friday.

Saturday – no further comment needed.

Sunday – the official day of rest.

On this particular Tuesday, I woke up wishing it was Wednesday (as I did most Tuesdays) but at least the sun was out and we had more than one thing on the calendar. Excitingly, my wife and I were going to step back out into the real world and have a pub lunch at our local – the first time either of us had set foot in a pub for over a year due to the pandemic and various banning orders for public nudity and cheating at darts. Before that, however, I had my monthly phone call with my Oncology team – it’s a bit like calling one of those late-night chat lines where they kind of recognise your voice but don’t remember anything about your previous conversation.

These calls would normally be appointments at the hospital so they could cast an eye over me to assess my match fitness for another round of immunotherapy. However, due to these being held over the phone, the medical professionals do somewhat rely on your honesty with regard to your physical and mental wellbeing. When they ask how I’m feeling I could say anything between “Fit as a fiddle Doc, I fought a bear last week and won before hopping three miles home for fun” and “It’s too late for me, I died last week and you are currently part of an elaborate séance”, and they would pretty much have to believe me.

On this occasion, I reported the usual fatigue (not tiredness, remember, fatigue) as well as the increasingly achy joints I was experiencing – particularly my fingers, knees and shoulders. This, I was told, could be a side effect of the immunotherapy drugs which can bring on symptoms not unlike arthritis. Consequently, I had spent the previous few weeks starting the day like a seized-up Lego figure with hands fixed in C-shapes and had resorted to not only taking Cod Liver Oil capsules and buying one of those squeezy hand pump exercise things that stressed out cops in 80s movies used to pump excessively.

So, there I am, on the end of a phone at the age of 40 with arthritic symptoms, no stomach to speak of, no pancreas or spleen, a digestive system that is erratic (to put it politely) and similarly unpredictable energy levels. And yet, when posed the question “How Are You?” by the doctor, my answer is the terribly and predictably English “Oh not bad, ticking along”. The context of the ‘How Are You?’ question is often overlooked by the casual but well meaning well-wisher but the person at the other end of the question has a lot to weigh up;

• Do they really want to know the actual answer?
• If they do, how much detail should I go in to?
• How much of my situation do they already know? I don’t want to overburden them.
• How much time have we got (is this in the shop or are we sat down with a fresh cup of tea)?
• Do I need a poo? (This one is quite specific to me but I’d recommend that everyone check in with their bowels before starting a long conversation).

As the asker, I’d also recommend you ask yourself the same set questions – nobody wants to be asked how they are swiftly followed by “sorry, hold that though, I really need a shit”.

From a functional point of view, the call was fairly run-of-the-mill in that treatment was given the go ahead so I prepared for another Friday afternoon in the Chemo ward. There was, however, a greater subtext to this call which was that I was still waiting for the full translation of PET CT scan which will take a little explaining.

Firstly, there was a shape on what is called my pancreatic base that had befuddled them somewhat and, secondly, there was something ‘avid’ in my pelvis. These two things combined had weighed quite heavily on my mind, body and soul over the weeks which leads to a certain amount of exhaustion and a whole lot of being grumpy, annoying and incessant tidying to stop my mind from wandering and wondering. This being my body, however, it was taking a whole slew of people to work out what all these shapes meant and what we should do about it. And it still wasn’t agreed by the time I had received this phone call but I was promised a call back by the end of the day with some answers – yeah right, bloody Tuesdays….

~

There’s an unwritten rule in our house that no big news will arrive after 5.00pm on a weekday or at any time during the weekend so these are the times when we allow ourselves to relax and even enjoy life a bit. So, at 7.00pm on this same Tuesday I was in the middle of a bit of a lounge disco with my little boy and the puppy (listening to a favourite of ours, ‘Black Glove’ by Goose and having a right old bop) when the phone rang and the caller display showed a Plymouth number ending in 436. Sadly, I now recognise this as the number for incoming calls from Derriford Hospital, a fact lodged in the same part of my brain as the fact that 103 was the code for cucumbers when I worked at Lidl in 1998.

That’s when all the rules were broken – a Tuesday got good and some big news arrived after 5.00pm on a weekday. It turns out that a lot of the confusion had been caused by my PET CT scan being compared to the previous PET CT scan which would be OK had that previous scan not been done in 2019. Regular readers will now that quite a lot has happened to me in the intervening period which made the comparison a bit like looking at a photo of me from the mid-90s and comparing it to me now and diagnosing sudden hair loss.

When they compared it with a more recent haircut, sorry scan, they could see that the issue with the pancreatic base appeared to have been stranding or scar tissue just settling down. The issue with the pelvis is still in the ‘to be confirmed’ category but is so small that they are not unduly concerned for the time being. So, we’re back into a holding pattern of treatment and scans for now which is fine by me with a cherry on top.

Treatment was fairly straight forward after the emotional rollercoaster of that phone call despite the nurse asking me “what do we normally do, stick a needle in you?” with an alarming lack of humour in her voice. For some reason, I always seem to be the last one sat in the treatment room with the nurses clearing up around me and checking the time on my drip which literally acts as a countdown to when they can clock off. This, combined with a slightly painful canulisation (I watched in horror as gravity started to pull the canula back out of my vein), left me feeling slightly sorry for myself as I walked back through the hospital until I crossed paths with an inpatient being wheeled across the corridor in a bed with an oxygen mask strapped to her face. I was about to drive myself home to my family to a home cooked meal so sit in my favourite chair and sleep in my own bed. What the hell do I have to feel sorry for myself about? Perspective. It’s a good thing.

As I drove home through the rush hour traffic of a Friday before a bank holiday weekend, however, it did get my mind ticking over. I have long since made peace with the fact that cancer has shortened my life (begrudging peace but that’s still peace, right?), there’s no way a man can do without this many organs or basic bodily functions and still live to be 90 so I’ve been treating life like an endurance race. One foot in front of the other, one mile after another and so we go, working through day without thinking too much about the finish line or the hundreds of miles still to go. But what if I just settle into an easy stroll and enjoy the journey a bit more without feeling like I’m hanging on, literally, for dear life every day? What if I make a plan or two for the future and dare to dream about milestones yet to come? Maybe, just maybe, this is the first day of the rest of my life and maybe so is tomorrow. As long as it’s not a Tuesday.

THE NEW NORMAL #57 – THE ONLY WAY OUT IS THROUGH

Hey cancer fans. It’s been a while, but things have been happening and things make me tired these days so that’s my excuse. I had some treatment, I spoke to a dietician, I nearly went to a dentist and I had a bunch of day job stuff to do. I finally finished proof-reading the book version of this blog, returned my little boy to the school system, filmed a patient profile video for MySunrise and did some gardening. It has been a crazy lock-down, shielding whirlwind and as mentioned in a previous post, keeping busy is what keeps me sane these days.

The elephant-memoried among you will remember that I scan a while back and I have discovered a new word to describe this interim period; scanxiety. There really is nothing like it for gradually tightening up your back, giving you tension headaches, subtly distracting you in a variety of ways, running you down and stealing bits of your sleep. The trouble is, when you get the results and they don’t go your way, your body doesn’t quite know how to respond with this energy. The results I got were actually pretty good – blood, bones, kidney, liver, heart and lungs are all free of cancer which is banging news, of course. The less banging news is that there is something called a borderline increase in growth in a lymph node in my pancreatic base. I was going to call this entry All About the Base but that has niche value for my kind of audience.

What does this mean for us now, then? Well, firstly we take a deep breath and focus on the positives. The cancer hasn’t spread to anywhere that it wasn’t before, the new ‘thing’ could be any number of things from cancer to a chess piece dropped in accidently during surgery, and apart from the tiredness I’m feeling pretty good right now. Secondly, we do whatever the doctors tell us to do and, immediately, that seems to be going in for another god-awful PET-CT scan (this is the one where they pump a load of radioactive stuff into you so that the picture is clearer). It’s particularly hard for those with diabetes (like me) because you have to do a whole lot of fasting first and it seriously messes with your blood sugar levels. So, we’re in a position where we get a dip in the scanxiety only for it to build up again until the next scan and then the next set of results. It is mentally and physically exhausting so if you know anyone having a scan or waiting on results then give them some space, let them know you’re there and just be patient with them.

~

Things got a little crazy for a minute there and I had to stop writing mid-blog to deal with real life. This week, I had to go for my monthly blood test at the local GP which is fairly unexciting apart from the reminder that I am known on first name terms by the nurses and that they’re willing to squeeze me in because I have ‘good veins’. Then I had another round of treatment which, again, was fairly uneventful but for two observations. Firstly, I was visited by my amazing Skin Cancer Specialist Nurse* who pops up from time to time in order to just chat and make sure everything is OK – and I mean everything, from work and relationships to food and pets. I mention this conversation because she said five words that floored me and nearly brought me to tears; “you’ve been through so much”. Now I’ve heard these words from lots of people before and they are touching but when you hear them from someone who spends the best part of her week talking to and helping those with varying degrees of terminal disease, well it certainly hits home. On her scale of what people have been through, I’ve been through “so much” and that equates to an awful lot.

The second observation was the conversation between another patient and one of the nurses hooking him up to a drip of thousands of pounds of medication. The nurse, possibly Malaysian (apologies if not), casually asked if the patient had received his COVID-19 vaccine yet;

Patient: “Nah, not gonna do that”.

Nurse: “What? Why not?”

Patient: “Well, it’s not been tested properly has it?”

Nurse: “What? 17 million people not good enough testing for you? I’ve had two and I’m fine”

Patient: “Well, I looked on the website and it was too complicated”

Nurse: (pointing at the window) “You see that window? Look outside, you see vaccine centre. Go there, get vaccine. Not complicated”.

Patient: [muttering as he produces a copy of the Sun from his pocket]

Nurse: [walking away shaking her PPE’d head] “too complicated…..?”

Now, somewhat surprisingly, my appointment for a PET-CT scan was booked in quick smart as they followed my Oncology team’s request for me to be booked in ASAP to the letter (also, if any of you read that as Asap rather than A.S.A.P. then I’m judging you a little bit). This meant that almost exactly 48 hours after finishing my latest treatment, I was being prepped for radioactive scanning and, let me tell you, if you ever want to feel truly unpopular, then I can recommend going for a PET-CT scan during a pandemic. I was greeted by a radiologist in the most PPE I’ve seen anyone wearing so far (all that was missing was a tin foil hat to stop the government reading her thoughts) and, after the standard temperature check and hand sanitisation, I was ushered into cubicle. As is standard process, I was checked over, answered an extensive questionnaire and then had a PIC line inserted into my forearm, ready for the radioactive element to be introduced intravenously. As soon as this was done, the radiologist loosely applied a plaster to the spot on my arm where blood was still oozing out and, backing out of the room, said “I’m going to leave you in here for an hour now as you’re quite radioactive. If you need the loo, use the one in the corridor because your urine will be radioactive too”.

This was my third PET-CT scan but the first time I’d been told that my urine was radioactive and also the first time I learned that the reason they leave you for an hour in a tropical island themed room with low lighting is so that you properly relax. This allows for the injected solution to be taken up by my body but, crucially, not by my muscle if I relax properly (I’m assuming that getting this stuff in to your muscles makes you either superhuman or super-sick so I’m happy to avoid that particularly scenario). The irony (of course, there’s always irony with me) was that in the corridor just outside my cubicle they had left the radio on playing the blow-by-blow commentary of Plymouth Argyle vs Bristol Rovers which was heading into the final half hour with Argyle holding a precarious lead – not relaxing for an Argyle fan at the best of times.

What was relaxing, however, was the scan itself which last 45 minutes and which I largely slept through, only waking myself by snoring too loudly and then at the end because of the cheery chime that either told me that the scan was over or that my spin cycle had finished. The unpopularity continued as I was told “you are free to go” before I had even got out of the scanner or put my trousers back on which led to the ever obedient me going from trouserless and lying down to fully clothed and trying to negotiate a parking meter within about three minutes. This is one of the unseen sides of COVID which means waiting areas, particularly small ones, are out of bounds so please be a little understanding if you see a number of dazed looking people shuffling around outside hospital (more dazed people than usual, that is).

Regular readers will remember the heartache of my first PET-CT scan which leaves me in a state that necessitates a distance of three feet from anyone under 18 or any pregnant women for eight hours. The same applied here so my little boy was pretty upset that I wouldn’t be giving him a goodnight cuddle again but this time we had prepared. Thanks to the people at Scamp and Dude (and a very kind nominator), we had acquired the dinosaur that is featured in the at the top of this post which is a buddy for little ones whose parents have to go into hospital. This little fella, now called Kobe, can hold a photo in its cape of the parent in question and gives the little ones something to hold on to. There were still tears when I got home and almost flinched if he approached me but knowing that Kobe was preloaded with a bunch of hugs from me got him through the night and I got the biggest morning hug the next morning so normal service has been resumed.

Finally, the timing of this blog is quite deliberate and fairly poignant too. I’m publishing this blog on 23^rd March 2021 which is five years and one day since I got my original diagnosis telling me I had a year to live, five years if I got very lucky. So, count me very lucky to still be here and very much not taking a single day for granted as this journey with cancer continues. Today is also the eve of the one-year anniversary of being told that I had months to live at the beginning of lock down which, now that we’re at the year mark, I think puts that one in the bin as a theory. This means that I’ve tackled cancer head on twice in terms of diagnosis and out surviving the odds and that’s what I plan to keep on doing. Whatever this scan finds I will keep following the advice, keep fighting and keep moving forwards one day at a time, one step a time, one hand over the other on the rope that I’m using to pull myself out of the quicksand of cancer. There’s no use looking back and I can’t look too far forwards but I have to find a way out and that way is through. Through the scans, through the treatment, through the bad days, through the good days, through the tablets and through all the time spent on the toilet. It is the only way so I’m taking it, however many bumps there may be in the road.

*It should be noted that the Skin Cancer Specialist Care Nurses are there for the patients AND their families and they are angels – angels will excellent admin skills, empathy, experience and knowledge.

THE NEW NORMAL #56 – PUPPY, LOVE

Because of the lockdown, home working and home schooling I’ve been having a lot of conversations with my son. Today alone he informed me that he had named his football Dave, asked me who I thought would win in a fight between a bike wheel and a scooter wheel if they were both to ‘come alive’ and played out an intergalactic fight between a ‘really strong guy’ and a ‘really stretchy guy’ (stretchy guy won, for the completists out there). Every now and again he asks me questions like ‘what does that pill do?’ or ‘did you leave your belly in the hospital?’ but more often than not we just talk rubbish and it’s brilliant. It is also brilliant when he draws stick men with steaming poos on their heads or tries to give the dog a cape. All these things make me glad to be alive every day and stop me from dwelling on the tedium and separation of lockdown.

What’s that? Oh the dog. Yeah, we’ve got a puppy. A little baby Labrador boy called Bodhi (that’s him in the picture) and he is an adorable pain in the ass. There has been strong lobbying for around six years to get a dog and just at the point I caved in the pandemic hit which sent the price of dogs through the roof. I mean, there’s profiteering and then there’s puppy-teering (and then there’s profiteroles) but I refused to pay over £3,000 on a furry beast that is going to eat everything below 4 inches in height and urinate and/or defecate on every available surface. Nevertheless, we hung on until we found someone who wanted a good home for their dog more than a big wad of cash and Bodhi was duly collected. So there are now ten mouths to feed in our house and one of them is permanently clamped around my wrist for comfort. I have a strange wife.

In between puppies, chaotic conversations and general lockdown life, there have been some medical shenanigans going on as well so I should probably update you on that while you’re here, eh? About a week ago I got an excited Facebook message from my wife who was physically only downstairs but mentally she was running a very select academy for six-year-old boys that only takes on one student at a time. The message was passing on that our local GP surgery was inviting those in the ‘at risk’ category regarding COVID to step forward and get vaccinated. So, like an excited teen waiting for my favourite boy band to have two songs played back-to-back on the local radio station, I called in and yelled “Gary Barlow” at the top of my voice. Needless to say, they hung up on me but the second time I composed myself and was booked in for the Astra Zeneca (Oxford) vaccine to be administered at the China Fleet Country Club in Saltash.

It felt like I was turning up to try and crash a wedding but as I was ushered through the various heavily arrowed areas by be-masked individuals it became more like an audition for the X-Factor in a world where Simon Cowell has become a serious germophobe and we must all bend to his will. In reality, it was what the British do best – a series of short queues, some beige small talk and an underwhelming injection in the arm followed by a pamphlet about what just happened and a complimentary squirt of hand sanitizer. In America there would have been fireworks set off with each injection and a balloon or a medal to take home but for the Brits there is just a pamphlet and the honour of being directed back to a soggy car park by a man in a high-vis vest and a flat cap…..and a mask, of course.

Based on a tip-off from a similarly ‘at risk’ neighbour, I managed to blag a vaccination for my wife who is shielding me so she was all excited to show Simon Cowell what she had to offer the following day. At the same time, my immune system (or lack of) was having a major ‘WTF?’ moment and I descended into a pit of flu-like symptoms for 24 hours, unable to look at even dim lights and pretty weak all round. I am pleased to say that I recovered pretty quickly but it was quite the bump in the road so I thought it was worth sharing in case any of you are coming up to a vaccination – I would recommend clearing out a day or two and buying in a load of comfort food if you have any immunity issues (unless the issues are around diplomatic immunity like Joss Ackland in Lethal Weapon 2 with Patsy Kensit and some questionable South African accents).

Once I’d recovered from that slice of fun, I had to report in with various people to make sure that everyone is on the same page because although it’s called a National Health Service I have found that various areas within the same hospital don’t necessarily talk to each other. In hindsight, I’m glad that I have a habit of telling everyone what’s going on because it threw up that firstly I wasn’t taking a steroid drug that I should have been which I then promptly started taking. My blood sugars, however, were not so glad and they went through the roof, so I checked in again and it turned out that I was double dosing on two different steroids because of crossed wires. I have now listed my drugs out for clarity (4 insulin injections and 13 pills plus the Creon stomach enzyme tablets) and have stopped trying to overdose on steroids just before I hit the brink of roid-rage.

All of this is, I have to say, fairly innocuous stuff by my medical standards but that in itself is worth mentioning because I am getting really good at appreciating the small and simple things in life. I walked to the shop on my own the other day for a loaf of bread and not only was I not completely exhausted by the process, but I was also perfectly comfortable, without anxiety and as close to normal as I have been in over a year. And as much as I cherish these normal and quiet moments, they often come before a storm of some description which, in this case, is a day of days next week where I will have a CT scan, receive my next round of immunotherapy treatment and, most importantly, pick up my new glasses. The main element of trepidation is the scan which is the first proper look at my insides after the internal dust of the operation has properly settled. This will be my first opportunity to find out whether it’s a green light for more normality or an amber warning light that we might to get even more brutal with any stubborn lingerings of cancer still floating around in there (points vaguely at body but specifically not at penis because doesn’t want penis cancer).

And so it is, with this fog of fear hanging over us that we approach the most romantic day of the year with a certain sense of uncertainty. I mean, how do you throw yourself in to Valentine’s day when you’re still shielding during a pandemic, you’re waiting on a scan that will determine your immediate and potentially long-term future and all you have to talk about is home-schooling or a hatred of Zoom meetings? Well, I’ll tell you how – you order the £15 Asda meal deal for 2 (3 courses AND a box of chocolates, people), you buy a glass jug of scrumpy from the local farm shop and you order a second-hand copy of Sleepers on DVD from eBay. That’s what romance looks like in Cornwall in 2021 and if you don’t like it then, well, stay away on Valentine’s day. You have been fair warned.

THE NEW NORMAL #55 – NEW YEAR, SAME ME

Happy new year everyone. 11 days in and it’s been a bit of a ride, hasn’t it? Trump has taken ‘nutso’ to a whole new level, Brexit has started to work through the gears and Covid is continuing to hit hard across the world – most of all in the UK where our natural approach of finding ways to circumnavigate the rules seems to be shooting us in the collective foot….repeatedly. Still, you didn’t come here for current affairs did you? I’ve had a few messages recently, tentatively checking in on me as I haven’t written since November so it seemed like a good time to put finger to keyboard (not as good as ‘pen to paper’ but more accurate).

When we last spoke, I was heading into Christmas with a good feeling, a festive spirit if you will, and all went pretty well. We missed family, like everyone else, and we didn’t really see friends apart from a brief and thrilling dalliance with neighbours when we were still in Tier 1. In fact, there were only two moments of real note over the whole Christmas period. Firstly, the day after Boxing Day, I managed to somehow starve myself of nutrients so that my body couldn’t warm up, leaving me shaking involuntarily and in need of food and whatever my long-suffering wife could force down my throat. This was a stark reminder that even if I don’t feel hungry then, I have to keep eating or my body will very quickly decide that it has had enough and start to give up.

The second moment of note was that we took the younger three of the children up to Bodmin in the pursuit of snow and we were successful. Aside from getting my Ford Fiesta stuck in the snow-mud slush, we managed to get enough snow together to build a vertically challenged snowman and had a fairly brutal snow ball fight which ended in fits of giggles and two adults trying to convince a six year old to stop eating snow that was, in all likelihood, resting on sheep dung. It was 45 minutes at most but it was a memory made and locked in which is something I’ve been very conscious of for the last few months. So that’s a big tick.

Apart from that, I managed to eat Christmas dinner, I didn’t win a single cracker, we played numerous board games, watched National Lampoon’s Christmas Vacation and opened a bunch of presents from friends and family. A normal Christmas by all accounts. Except that it wasn’t, was it? Aside from all the Covid stuff, this wasn’t a Christmas I was supposed to witness if my March 2020 prognosis was anything to go by so there was a risk that I would crumble in a pile of snotty tears at any moment. I didn’t though. I genuinely enjoyed living in the present, being present and just taking things slower as my physical state dictates which allowed me to breeze past most of the what ifs, maybes and twitchiness every time ‘Last Christmas’ came on the radio. This feels like a win and snuggling down to watch the Julia Donaldson special with my boy while the fire roared was a real moment of calm in the eye of the storm.

My main Christmas present this year, however, was a feeling of gratitude and appreciation that I felt at every turn. Gratitude that I had my family around me when so many were alone, appreciation for every morsel of food that I was not only able to eat but also digest when some of those I shared a hospital ward with this summer won’t have been so fortunate, gratitude for a warm, dry house when there are those spending Christmas in a shop doorway and appreciation for at least one more chance at Christmas, even if that’s all I get. When I was going under the anaesthetic influence back in August, I have a vague memory that I begged some faceless deity for just one more Christmas so, fair deal.

We saw the new year in with a couple of games, a little booze and a stream of the Hootenanny which was a couple of minutes delayed so the fireworks outside went off before we’d even charged our glasses. We didn’t care though, 2020 and all its nightmares were officially over and we could look forward to all the sunshine and roses that 2021 was going to bring us, right? Wait, what? You mean absolutely nothing has changed just because we’ve all replaced our calendars and necked some mid-priced Prosecco? We’re in ever stricter conditions than before and this time it’s cold and this time I actually have to work from home? Madness. Still, it’s approaching a semblance of normality so I really can’t complain (well, I can – work can still be annoying from time to time but at least I can turn my Zoom camera off and swear frantically at the screen without anyone noticing. You can’t do that in a conference room and maintain your employed status).

Talking of getting back to normality, I had my first phone call of the year from Oncology yesterday which was relatively uneventful. We discussed me shivering, me falling over in the bath, me taking lots of drugs, me losing weight and me going to the toilet. Sometimes I feel like the conversation is a little one sided, so I like to ask how the medical professional is and learn a bit about them but after some initial chit-chat things tend to get a bit awkward so, in a reversal of normal life, I have to start talking about my poo again just to ease the tension.

The main thing of note from the conversation was that I am now due to resume my immunotherapy treatment and then have yet another CT scan to find out how things are looking ‘in there’. Thus begins the slow build up of pre-scan anxiety and the rarer but more potent pre-scan results anxiety. Honestly, the treatment I can cope with because, aside from a few misguided cannula insertions and getting sweaty buttocks from the wipe clean chairs, there is very little risk of anything out of the ordinary happening. The scan itself is also pretty uneventful but once you’ve been through that hoop it just starts a ticking time-bomb until the results get delivered. It’s a lot like hitting ‘send’ on that carefully worded email telling that special someone that you love them or your boss where to stick it and then realising that you can’t put the pin back in the grenade. Mixed metaphors? Me. Non monsieur.

One last thing, I went for an eye-test today. Now, on the face of it, this is a little mundane but an eye-test during a pandemic when you have cancer and above average anxiety about going outside is a different ball game. Firstly, I had to negotiate the near-abandoned mall to get to Boots and I can tell you that walking through this normally packed mecca of capitalism that echoes with the Covid-19 safety reminders is an eerie experience. The fact that one of the few things open was the ‘essential’ Krispy Kreme stand just added a sense of the surreal to proceedings (and yes, of course I bought some. It would have been rude not to). Secondly, there was the running-of-the-gauntlet that is the make-up section of Boots (something that normally freaks me out just as much as clowns) but there was nobody there and no make-up. Where were they hiding? Was there to be an ambush? Anxiety ratcheted up.

Finally, I made it to the optician’s bit at the back (seriously, why do they hide the bit for people with poor eyesight in the back corner of the shop?) and went through my usual rigmarole of having puffs of air blown in to my eyes and the endless choices of “which is better, 1 or 2? 1 or 2? 1 or 2?”. What is newsworthy, however, is the two bits of overhearing/earwigging I did while sat in the waiting room trying to remain two metres away from everyone else at all times. Firstly, there was the member of Boots staff making a phone call about glasses to an elderly and clearly alone gent. The meat of the call took about 1 minute (i.e. Boots will deliver your glasses next week) but the next five minutes was pure humanity as she asked the chap how he was coping, whether he needed anything and what he was doing with his days. Bravo to that lady and all the other unsung and unseen heroes out there who take the time to care about their customers even when there isn’t a bonus in it for them.

The other overhearing was a man for whom English was not his first language trying to understand why he had to pay for another Covid test when he’d paid for one last week and then stayed at home for 7 days. The emotion, stress and sheer confusion of the conversation which eventually involved three members of staff and someone on the end of a phone. Voices were raised, frustration was vented but in the end the guy went away satisfied, but it did bring to light how terrifying it must be to be coping with the litany of guidance changes around Covid-19 (64 to date and counting) when you’re in a foreign country and dealing with in a language that isn’t your mother tongue.

So, to summarise, Boots staff in Plymouth have seriously impressed me today, my health is about as stable as I could have hoped for and work is still a source of stress but boy is it good to be properly back in the saddle (fun fact, I was once thrown off a pregnant horse, so I am never getting back in an actual saddle ever again). Treatment, scans, meds to come and maybe some surprises too but I reckon we can cope with those. 

THE NEW NORMAL #54 – BLACK (OUT) FRIDAY

There have been signs this week and I’m moderately superstitious so I should have heeded the warnings, but I was too busy with life and Christmas preparation to pay attention. After leaving Derriford hospital upon completion of another round of immunotherapy I noticed a strange, salmony tinge to the sky which, upon driving West towards home, revealed itself to be one of the most glorious sunsets I have ever seen. Lucky for me, I was literally driving off into the sunset from a treatment session that is likely to be my last of 2020 (there’s an outside bet that I will need treatment on Christmas Eve but they’ll have to drag me kicking and screaming) and that felt good. Suspiciously good.

During my treatment I was visited by one of the lovely Oncology team to have another look at this postural blood pressure issue and that will require me to rewind time a little bit for the full effect. Ten days ago I visited another new department at the hospital (Endocrinology, for those still ticking off the boxes in the i-SPY book of medical misery) where I was booked in for a short Synacthen test to see if my adrenal gland is still working. Long story short, it’s not – I was injected with a chemical that stimulates the adrenal gland and my adrenal gland basically said; “nah mate, can’t be arsed”. So, I now sport a dashing medical alert bracelet that says I am both insulin and steroid dependent – for life, yo.

While I was there, I mentioned that my GP surgery had been unable to perform the postural blood pressure test so the Endocrinology nurse willingly volunteered to get it done. The test involves lying flat on your back for five minutes, having your blood pressure tested, standing up and having your blood pressure tested and then staying standing up for another minute before, you guessed it, having your blood pressure tested again. The first measurement was 117/64 which is low but then I’ve always been pretty low on the blood pressure front so no surprises there. The second measurement was 91/62 which is lower still but manageable.

Before I was given the third measurement, the nurse said something I’ve never heard in a medical scenario before – “oh wow, that’s REALLY bad”. This slipped out of her mouth and she immediately apologised but I did wonder what it would be like if the medical profession were more honest in their reactions. Maternity wards would echo with shouts of “Christ that’s an ugly baby”, A&E would be filled with “How the fuck did you get a rubber duck up THERE?” and almost every other ward would chime with chants of “Who has farted this time?”. The rare outburst of honesty from the Endocrinology nurse was refreshing and terrifying, not least because a minute of standing still had started to make me sweat, sway and lose focus on the wall I had be staring intently at. Understandably, the final blood pressure reading was 73/44 and this is too low to be healthy which means more pills, thrills and probably some bellyaches.

All these factors should have raised a red flag but even if they had it wouldn’t have stopped the slightly alarming occurrences of Black Friday 2020. With my wife on the phone and the kids rapidly hurtling down the stairs, I jumped up to attempt an intervention before they interrupted the phone call and got half way up the stairs before my lack of blood pressure meant that my vision, hearing and general sense of control just, well, went. The next thing I knew I was sat at the bottom of the stairs with a sobbing, screaming six-year-old son above me, a panicked wife in front of me and a mildly traumatised step-daughter to the side. I didn’t get what all the fuss was about but evidently I had crumpled like a marionette with snipped strings, slipped down 6 steps and landed in a crumpled heap without noticing. Ironically, this meant that my wife had to hang up the phone to come to my aid, but my intentions were good.

This is yet another example of the things that cancer takes away from you and I’m not just talking about the ability to climb stairs, maintain ocular control or not appear like a drunken fool every time you stand up. No, in this instance I’m talking about the chipping away of one’s confidence but, even worse, the chipping away of my son’s confidence in his dad. The fear and uncertainty in his eyes at having seen his dad collapse (apparently, he thought I’d died according to my wife) will stay with me and makes me feel like I’ve forced him to grow up a little bit more before he needed to. I’m fine though, a slight ‘ouchy’ on my hand but otherwise not a scratch in terms of physical damage.

In other ‘stuff cancer is taking from me’ news, my body is now getting be quite literally unrecognisable to me which is causing frequent moments of hypochondria. Last week I spent a good half hour trying to work out what the hard lumps between my legs and torso were before realising with a mix of relief and nostalgia that these were, in fact, my hips. Clothes don’t cling to my girth in the way they used to, I get cold when I never used to and I find myself hunching under the weight of my big ol’ head (until my wife barks “straighten up” at me like part matron and part sergeant major). My stomach (what’s left of it) makes some pretty unworldly noises and my arse, well, let’s just say that department is far more akin to jazz percussion than the solid and reassuring gong sound I had previously been used to.

Anyway, this is going to be my last post before Christmas unless anything drastic occurs so I ought to end the year on some positives. Throughout 2020 I have amassed countless scans, had one major operation, been for 10 sets of treatment, popped hundreds if not thousands of pills, injected myself so much my belly looked like a dot-to-dot that had been half completed and I’ve lost around 4 stone in weight. However, I have also received hundreds of supportive messages, met some wonderful new people (albeit virtually), smiled to myself and to others more than ever and survived a lot of moments that I wasn’t necessarily expected to (in your face, expectations).

More recently, I have had a scan that showed no signs of cancer and returned to a job I thought I was destined never to return to – albeit via the soulless window of Zoom. I am more prepared for a Christmas I was never supposed to see than I ever have been in the past and have managed to keep the imaginings of ‘future Christmases without me’ to a bare minimum (thanks Sertraline). The funny thing, as positive as all of this is, I’m not sure I would have taken this ending to 2020 had I been offered it January. I mean, if a shady guy approached you as the bagpipers trouped in to Jools Holland’s Hootenanny with an offer you would surely be made to accept it on the basis of “Look, you’ll survive but you’re going to spend most of the year indoors, you’ll lose most of your stomach and pancreas as well as few other organs, you will completely go off tea and be fearful of alcohol and you will do some of the most spectacular shits of your life but you do come runner up in Cornish story writing competition so it’s not all bad”.

Nevertheless, I’m here, my body is beach ready and it’s only November, I can enjoy eating most of the time and aside from my new penchant for body surfing feet first down staircases my son is able to enjoy time with me without any obstacles – I even managed to pick him up this week for the first time since I was sliced open in August and that really was a very, very special moment I can assure you. I used to measure my own success on whether I was doing better and feeling happier than at this point last year and I’m not sure that’s something I can commit to anymore. That’s not to say I am sadder or doing less well but my situation changes so rapidly that a year feels like a very long time indeed. So, like the old football cliché, I’ll take it one match at a time and play the team in front of me no matter what numbered balls 2021 pulls out of the velvet bag (sorry, it’s FA Cup weekend and I’m really hoping for a Plymouth Argyle vs Chorley FC tie in the 3^rd round). Anyway, have a merry Christmas, a New Year that is superior to 2020 (can’t be that hard) and thanks so much for reading my ramblings this year. I’ll be back with more tales of woe and joy in the new year as well as some exciting news about a book and the work I’m doing with the people behind My Sunrise, an app for cancer patients in Devon and Cornwall. For now, however, I’m going to close the curtains, light the fire and watch a Christmas movie whilst sucking on an ice lolly. That’s my normal right now.

THE NEW NORMAL #53 – IN THE NAVY

When I was about seven or eight years old, there was a competition at school to build a vehicle that would self propel itself across a short table top course – fastest across the course would win a prize (a Curly Wurly was involved if memory serves correctly). Most kids went for some sort of rubber band and propellor option or launching the car with a ramp but I chose a singularly odd method which involved filling a yoghurt pot with stones, attaching that with a length of string to my model car and then dropping the weight off the edge of the table. Zoom. Now, as a prototype for a real car this had lawsuit written all over it, but I won that bloody Curly Wurly by a mile and the car smashed into smithereens.

I have used the same method of propulsion throughout my life to get over my shyness and anxiety – everything from volunteering to be the singer in a band or the listing editor of the student magazine to applying for (and getting) jobs I am in no way qualified for. It was with this tried and tested method that I returned to work (albeit from home and a couple of days a week) and it terrified me, if I’m honest. How women do it with maternity leave I’ll never know (huge respect on that front) but returning to work when you’ve been out of the loop for 7 months is hard enough, doing it when a pandemic has changed the world around you is something altogether different. That said, once you see some familiar and smiling faces staring back via a Zoom screen and you start to remember all the acronyms that are lodged somewhere in the darkest recesses of your memory, well it suddenly doesn’t feel so daunting.

Was I physically ready to return to work? Hell no. But my mind is a yoghurt pot full of stones and sometimes my body just gets dragged off the side of a junior school desk in the interests of progress. That’s the funny thing with recovering from a major operation, you think you’re doing OK because you’ve managed to dress yourself, have a shower without falling over or keep all your food down for a day. But then you try taking things to the next level by picking up a moderately  heavy box, sitting in the same chair for a day or focusing on a screen to read an 11 page document and you remember that they said it would take 8-12 months for your body to recover from the trauma and this is only the end of month 3. Mentally speaking I am keen for purpose and challenge but, as I say, my mind is still a yoghurt pot full of stones with a sole purpose of dragging my body on to the next day and the next so there is still some refinement to be done in that area.

Talking of refinement, I have been particularly sluggish and sleepy again over the last week which coincided with being from one steroid (Prednisolone) to another (Hydrocortisone/Hydventia). The reason for this change is to find out if my body is still producing any cortisol of its own accord or if I am to be entirely reliant on substitute medication for the rest of my days. The slight problem with this switch is that I was on 10mg per day of Prednisolone and this translates to about 80mg per day of Hydrocortisone, but I was only prescribed a dose of 20mg per day. The effects were pretty instant as I found myself living a groundhog day of Boxing Day proportions where I just wanted to nap and listen to comforting TV all day (my eyelids were too heavy to actually watch the screen). Needless to say, my dose has been upped to 40mg which has had an almost immediate impact but the proof will be in the pudding when I go for my synacthen test in a week or so (you can either Google synacthen or wait for the next instalment of the blog).

Another new feature of my life is occasional black outs which may be linked to the lack of cortisol in my body which regulates blood pressure – it’s all connected you see, the body is clever like that. The experience has been repeated at least three times where I get up to do something, move a few steps and then have to hang on to the wall or door frame to prevent myself from falling over as my vision completely disappears and I just, well, go. I’m not sensing anything in the room around me and I have to be brought back by someone else which is disconcerting for everyone involved.

The first time it happened I was just walking to the kitchen from the lounge and managed to anchor myself on the door frame. The second time was more traumatic as I jumped up to deal with a sobbing child stood at our bedroom door in the early hours I managed a few steps before losing my balance and falling head first in to the wardrobe like someone making one last desperate bid for Narnia – this did not in any way help the sobbing child or my sleeping wife. The most recent incident occurred when a neighbour popped by to ask for help jump starting her car and I managed to open the door and say “hello” but then I don’t remember anything before hearing the same neighbour rousing me from my standing slumber saying “Roland? Are you OK Roland?” with concern in her voice. The experts seem to think it might be something to do with low blood pressure not coping well when I go from reclining to standing and moving too quickly so I have to undergo a postural blood pressure test (again, more next time). 

Despite all of this, there has been some good news recently and it almost snuck in unnoticed. A telephone conversation with my key worker centred around my dizzy spells and cortisol deficiency before the phrase “oh, I’ve got your scan results here, do you want to hear them?” was tossed casually in. This was the first CT scan since my big operation so the results were important and, largely, pretty positive but they come with a caveat that were are still in the early days stage of the post-operative period and everything inside me is still mixed up, like sediment slowly settling in a dirty bucket. Essentially, the nodules on my lungs have basically gone, there doesn’t seem to be any residue of the tumour left over and all my remaining vital organs (Liver, Kidneys, Heart etc.) seem healthy enough. I was introduced to a new word as well; stranding. Stranding is the word used to describe the swirl of tissue and fat still left in the body after the operation which makes it harder to see what’s going on. I imagine it to look like the whisps of egg-white in a frying pan when I amateurishly try to make poached eggs but that makes me feel a bit gippy so I soon move on.

The next wave of good news came from the good people at St Luke’s Hospice who I haven’t visited in 18 months but who were very keen to get a look at my leg. I was met with a series of questions to fill in the poor, unsuspecting nurse on my last 18 months of medical shenanigans and given a few stern looks to show disapproval that I hadn’t been wearing my compression stocking for most of the year – I reasoned that when you’re told you have months to live these things drop down your priority list fairly quickly. Nevertheless, all was forgiven when the lymphoedema nurse saw my leg and how healthy it is – largely due to months of keeping my feet up and then losing a lot of weight which relieves pressure on my leg and the skin that keeps everything inside said leg.

The main takeaway from that session was that my leg is now of such a diminished size that I can now choose my stocking from the ‘off the shelf’ catalogue which comes with a range of colour options including (and entirely limited to) grey, black, beige and navy. I’ve gone for racy navy because, well, grey seemed awful and I’ve tried black and beige already. Nevertheless, this was one slightly swollen legged step back towards normality which cancer has tried so hard to remove me from. Cancer puts you in the middle of a labyrinth sometimes so when you can feel yourself making the right turns, no matter how small, you have to take that as a win (you also have to imagine cancer watching on like a moustache twiddling villain shouting ‘curses!’ when you foil any small part of their evil plot).

So here I am. I go to work (at home), I eat food (slowly and in small portions), I pick surgical stockings from a catalogue, I’m looking forward to Christmas, and I’m even drinking a glass of wine as I write this. I’m both excited and enraged at what is going on America, I’m amazed that the Tories are still anything like in charge and I’m still as fearful as a man can be about a global pandemic as we head in to winter with folk still thinking it’s all a hoax. But that’s about as normal as normal gets in 2020, isn’t it? And if, for some freaky reason, a younger version of me has travelled forward in time through the internet and is reading this then please understand this, Roland: Normal is fine, normal is good, boring is amazing and uneventful is incredible. You should try it some time. Oh, and if you can avoid stubbing your toe on that step in 2009 that would be immense, thanks.

PS If you, dear reader, want to keep even closer tabs on my cancer fun, then there is now an Instagram page where you can get a more regular fix. Come join the fun at: https://www.instagram.com/bigtoecancer/ 

THE NEW NORMAL #52 – STUCK IN THE MIDDLE

Hey, how you doing? It’s been a few weeks. I keep thinking I won’t bother writing another post because compared to the first eight months of 2020, the last couple have been a breeze on the health front. Then I remembered two things; firstly, I need to practice what I lazily preach and appreciate, nay, celebrate the normalness of my health situation right now and, secondly, the eye of the storm is often the quietest and most dangerous place to be. Quick, to the Lap(top) Cave! (I’m sticking with this because I like the imagery, but I originally referred to the Lap Cave but decided it sounded like a really, really dingy lap dancing club. In Yeovil).

The first signs that I might be stuck in the middle of something came when my wife asked me make a list of a few things I might want for Christmas (she likes to buy me presents when I stay alive for another year, it’s a little thing we do). After half an hour of furiously searching the internet and realising that I didn’t actually want or need all that much, I stood back to survey my work:

• A hedge trimmer.
• A Laptop tray.
• A tiny vacuum cleaner.
• A light up globe.
• A uni-slipper (that’s a slipper for both feet at once that you can pop a hot water bottle in).
• VIPoo Spray.

On careful reflection, I decided that this list was so squarely middle aged that I needed to youth it up a little, so I added a couple of posh flavours for the Soda Stream. This was, however, just papering over the cracks and it seems that during 2020 I have been accelerated firmly into the middle of middle age with a friendly shove in the back from our old unfriendly neighbourhood pillock, cancer. I haven’t tasted booze since late July (more on that later), a cup of tea is too much for me to cope with, I can’t eat until I feel like a beached whale at an all you can eat beach barbecue and even just seeing mates makes me feel like a more well looked after Julian Assange. All that is left, it seems, is to start tinkering with my car (that I never drive anywhere) on a Sunday, taking up golf or getting one of those De Agostini magazine subscriptions that will allow me to make a scale replica of the bus from Spice Girls the Movie in just 17 short months.

Once I had accepted my inevitable fate, I almost leant too hard into the experience. I decided middle age was no place for a mobile DJ (anymore) so I donated my PA to the local school and I’ve started wearing jogging bottoms with chunky knitwear without having shaved for….well, it’s been a while. I even found myself Googling barge holidays this morning and we can’t even go on holiday – I was just looking at barge porn and I hadn’t even got out of bed at this point. Who starts their day with barge porn?

The saddest part of all this now is that whenever I talk to anyone new (i.e. anyone outside my immediate family or the postman), my post greeting small talk immediately turns to matters of health and that is a common situation for cancer patients and those who’ve been through a big operation. You find yourself feeling as though you are defined by what you’ve been through, what you’ve lost and what you can’t do anymore when actually you need to be focusing on what’s great about now and what you might have to look forward to. To return to the hurricane analogy, you’ve survived the first half, there’s only one cow on the roof and, as boring as it might be, you get to ride out the second half in the relative comfort of a bomb shelter with the Haynes manual for a 1982 mini cooper as your only entertainment.

In the spirit of things, here’s what I’ve been finding joy in recently;

• My little lad has aced the first half term of the school year including a socially distant 6^th birthday and is generally pretty ace.
• My wife has taken her cooking obsession to a new level and thanks to my new tiny stomach I can eat as much as my body lets me and not a forkful more so my trim figure is hanging around (I’m in a waist size I haven’t seen in my own wardrobe since I started university).
• A recent video consultation with my Endocrinologist suggests that I’m managing my new body well and there only needs to be a few minor tweaks to my medication (this was after the visible revelation that I had had so many organs removed in the summer – this memo had not reached him before the appointment two months after surgery….).
• Christmas is very much looking like a possibility and, as I’ve previously mentioned, I bloody love Christmas so that’s a big one for me.
• Binge watching old episodes of Task Master, discovering Ghosts and watching the cats on Cat Nip has made me laugh harder than I have all year and laughing is categorically very good for you.
• Japanese rice crackers as they neither make me want to vomit or rush to the toilet like Paula Radcliffe mid-race plus they taste lovely. I am addicted and running low. Please send more.
• The book version of this here blog is pretty much finished, I’m planning new episodes of my funereal podcast and I’ve been asked to put a couple of radio shows together so there are projects in the offing and I loves me a good project (before anyone well meaning people write in on a postcard, I know that ‘getting better’ is a project but it’s a pretty one dimensional project).

So, life isn’t all about watching World War II documentaries and groaning when you change positions just yet. It is partly about those things, but I do have some excellent things to live for – not least my wife’s halloumi curry which is a thing of genuine beauty.

One middle I’m really looking forward to getting stuck into again is work. Being ‘in the middle of something’ is so often seen as a place of stress and for good reason but I do crave of being part of something bigger, something which can have a positive impact on the world and something that involves other adults to talk to (albeit via Zoom). I mean, I love my wife dearly and if I had to choose one person to spend quarantine it would definitely be her, but our conversation has resorted to ‘where in time would you most like to go on a holiday?’, ‘what’s your favourite vegetable?’, inventing the game Fantasy Parliament (Greg Davies is to be PM), and some pretty distressing games of Snog, Marry, Avoid . It has all gone a bit weird. On 3^rd November 2020 I will return to gainful employment with the University of Plymouth with actually leaving the house and it all feels a bit unreal. Seven months ago I was told that I wouldn’t make the end of the year and here I am wondering how we’re going to manage Secret Santa and the office Christmas party over a dodgy Wi-Fi connection. Is it a Christmas miracle? Very nearly.

Before I get back to work, however, there’s the small matter of Halloween to contend with and when you’re classed as highly vulnerable during a global pandemic that presents its own issues. The main issue being telling a very excited six year old that trick or treating maybe have to be confined to going door-to-door within our own house but he took his minimalist birthday like a champ so fingers crossed. Then there will be fireworks, picking out a Christmas tree, putting up the decorations and everything else that goes with this time of year which I will be gorging myself on gleefully this year. I may not be able to eat and drink in the way I used to, but I can damn sure still be merry and make the end of 2020 much, much better than the middle of the year.

As I mentioned earlier, me and a team of family and friends have been abstaining from the evils of alcohol for the entirety of October to raise money for Macmillan Cancer Support. Personally, I’ve been on the wagon since July for one reason or another so it’s not been that much of a stretch but in this year of years and particularly at this time of year I know a drink at the end of a long, cold, wet week is very welcome. So, if you feel so inclined, please check the link at the bottom of this post and donate anything you can spare for a fantastic cause. It will be very much appreciated.  

Donate Here: https://www.gosober.org.uk/teams/bay-view-crew

THE NEW NORMAL #51 – DREAMS CAN COME TRUE

During a difficult period in my life (divorce, sofa surfing, temporary homelessness etc.) I had a recurring nightmare that the police would come in the middle of the night and take me directly to prison for a crime that I had no knowledge of. I didn’t dream this dream for a very long time and then, during this period of lockdown where I was faced with an untimely death, the dream returned. Now, I know as well as the next guy that telling someone about the dream you had last night is tedious (unless it’s sexy and involves you) but I do find it fascinating that your subconscious can create a scenario to be played out in the middle of the night when you are anxious about being sucked away from everything you know and love by something that you have no control over and are unable to fight. Although this dream has now disappeared again since my discharge from hospital the anxiety remains, festering in my subconscious, and I can tell you that managing that head-fuck during a pandemic doesn’t make things any easier.

I wanted to start with that little story to give the last few weeks a bit of context because there is a trap with recovering from any major procedure and it’s a dangerous one that I keep falling in to like Sideshow Bob stepping on rakes. Every message, phone call, passer-by and well wisher will ask “how are you getting on?” and I will give one of a range of standard responses which feature phrases like “not bad, considering”, “fine”, “I’m spending less time on the toilet now”, “I’m eating much better”, “I managed a walk on the beach the other day” or “do you want to see my scar? It’s healing really well”. And all of these responses are true and fair representations of how I’m doing but they all refer exclusively to my physical recovery. As with everything in life, however, there is a mental and emotional side to recovery and that is something we are all guilty of ignoring in this conversation.

My physical recovery is going well and, by and large, my mental and emotional health is pretty good as well but there have been bumps in the road, to say the least. For instance, we recently binged on the Netflix series the Fall (very good but not for the faint hearted) which featured a scene where one of the characters was coming out of a coma and gagging on the air tube that had been fitted down his throat. The sound of this gagging accompanied by that omnipresent beeping dragged me right back to the hospital ward and I had to close my eyes and put my hands over my ears like the first time I watched ‘IT’ at an inappropriately young age. This was an involuntary response and one that I wasn’t expecting but I am now learning that scenes involving surgery or anyone in a hospital bed make me seriously uncomfortable in a way that they didn’t before.

On the emotional side of things, I’m feeling pretty vulnerable and being cocooned in my house to hide from the dastardly Covid doesn’t help with that state but as the body gets stronger so your confidence grows and the vulnerability subsides. Small walks, picking up my son from after school clubs when the playground is less busy, doing basic chores and even having a cuddle without wincing all add up to a better state of mind. It is noticeable, however, that for all the attention given to mental health at the moment, this is one area that hasn’t been checked up on. I’ve had calls from Oncology, the Oncology dietician, the London surgery team that treated me and a few others but nobody has taken the time to check in on my ‘feels’, as the kids say. I’m lucky, I’m not standing on a ledge (literally or metaphorically) but I hope that others in a similar situation to mine might be getting more after care on this front (I hope, but don’t hold my breath).

One thing that I and others have recently noticed recently is just how much of me cancer has taken away recently. First, there was the skin pigment and hair colour which started to turn me in to a paler, more wan version of myself thanks to the immunotherapy treatment. Then came my energy levels and natural joie de vivre, stripped away like a paper raincoat during a monsoon shower and only partially restored by western medicine. The most recent theft, however, is more literal and physical. I’ve lost about 2 stone or 13 kilograms since my operation and, even for a big fella like me, that’s noticeable. I used to have thick, tree trunk thighs (rugby player’s thighs my neighbour used to say which was only mildly disturbing given the 70 year age difference) but now they are closer in size to large Schnitzels which gives me the overall body image of a rotting satsuma on two cocktail sticks. The thing that slays me every time I see my new body (complete, I am told by my loving family, with a big belly sad face made by my scar for a mouth and nipples for eyes) is just how indiscriminate cancer is with this stuff. Like a malicious Artful Dodger just swanning around and whipping out your organs, pocketing your body mass and siphoning off your lust for life before skipping down to the docks to share its ill-gotten gains with the other urchins. Kids can be nasty, can’t they? Oh wait, that was an analogy. Cancer was the kid. Kids are alright after all! Hooray. Still though, cancer is a knob.

Despite all of this, when I wake up every morning I am lucky enough to have a wife who murmurs something along the lines of ‘morning’ or ‘how are you feeling’ and, when she finally rolls over, she looks at me with absolute and unmistakable love. We’ve been through a lot together but when the tears dry up and the calm moments come between cancer, Covid and family life, there is a look I get gifted from those beautiful eyes that is so clear, so unmistakable and so uplifting that I honestly think I could do without all the drugs for a day. That look is love and I’m sorry if this is corny or mushy but it is such an important part of my story that it really does need mentioning. We discussed the other day whether I would still be alive if our ‘sliding doors’ hadn’t opened at just the right time and I really don’t think I would, such is the power, positivity and stability I get from my wife’s love. If I could bottle that feeling and hand it out to everyone, even if for just one day, I know it would make the world a better place.

In terms of actual medical stuff, there have been a lot of phone calls from people claiming to be medical professionals who seem happy enough with my recovery thus far. Words like ‘amazing’, ‘incredible’ and ‘remarkable’ have been used but I take this all with a pinch of salt as I am acutely aware of just how rare a position I am in. There really aren’t many people knocking around, particularly at my sprightly age, who have had so many organs removed and are still managing to mow the lawn, walk to the shops (without actually going in) or absolutely thrash a five year old at a game of rock-paper-scissors. This means that most of the medical folk I speak to only have experience of one part of my situation and it is up to me to put all of that advice together and work out how to best move forwards. The diabetic team want me to lose weight, the oncologists want me to maintain my current weight, I need to do exercise but keep my leg up because of the lymphedema, I need to stay hydrated to help with the meds but not drink during meals because of the enzymes and I also need to eat around 7 times a day. After a while, you have to tune a lot of this stuff out (not all of it) and just listen to your body. If you had seven people stood around you in a circle, they would all see only their view of you and would give advice based on that. However, you spend 100% of your time inside your own mind and body so you’ve got a unique view on things and that counts for quite a lot when it comes to staying alive and staying happy.

Nevertheless, there is one group of medical professionals that I would like to doff my virtual cap to (fun fact, I just sold a flat cap on eBay this week so I can no longer doff it) and that is the Phlebotomists. These are the people that spend all day, every day (and night in some cases) taking blood samples from patients and getting them analysed. Blood tests are a routine part of the being sick process and I’m mercifully unsqueamish about the whole thing so I hadn’t given it much thought before but my veins are starting to be obstinate about giving up blood so I’m now in to the space where it takes multiple attempts to draw blood and fair bit of moving the needle around inside my arm until they strike gold (or red, to be precise). What fascinates me is that this bit of blood (less than your average shot glass full) is then sent off to someone with minimal information, they analyse it and work out exactly what is missing, too high or too low and that allows the correct medication to be prescribed. Imagine, if you will, turning up at a builder’s yard with a brick from your house and asking them to tell you what needed fixing in your house. Or asking a mechanic to tell you why your car makes that funny clunking noise based on the bit of engine oil you’ve collected in an old MacDonald’s cup you found under the passenger seat. It would be madness but that is essentially what the blood nurses do and they are also, in my experience, some of the funniest nurses around so I say cheers to the Phlebotomists and all the bloody Blood Nurses. I’d raise a glass but I’m doing Sober October to raise money for Macmillan and I’m probably not supposed to be drinking right now.

The main focus now is to get back on to the Immunotherapy wagon which I did with aplomb yesterday. This is the same treatment I’d been having before the operation but now that I’m lighter, weaker and in a different boxing category, I was warned to expect more fatigue as a result. The treatment itself was fine (canula went in first time and the lovely Scottish nurse administering the Nivomulab was very chirpy) but there was a slight moment of panic when a shriek came from the corridor outside the ward which made me and the other cancer patient nearly pull our IV drips out in shock. It turns out that the nurses have to hide all their pillows at night to stop them getting pinched by the other wards and the room where they had stock piled the pillows had been the scene of revenge ambush in some hot nurse-on-nurse action. Maybe it’s time for a Carry On reboot….or maybe not, woke Carry On would be just awful.

For the last few months, one of the common conversations in our house of a morning has been “if you could go back in time, when would you go to?”. We used to discuss going back to the 60s and 70s to enjoy the music and cultural explosion or visiting earlier periods to witness significant events or maybe just to get Hitler circumcised as a baby. More recently the wish has been to go back within our own timelines to alter our recent history – maybe go to the doctor earlier or demand a second opinion on my skin sample slides. My wife recently suggested that she would accept going back to 2018 when we had settled into a pattern of going for scans every three months and getting the all-clear a few weeks later. Well, as Gabrielle once sang, “Dreams can come true” because the message from the Oncologist is that IF immunotherapy goes well and IF subsequent scans come back showing no signs of further growths then we are potentially in line for a return to a less eventful way of life. The fear, of course, is that it’s my wrongful arrest dream that comes true by mistake. Or that one about the giant ice-cream in bondage gear….No Mr Whippy, not again!

THE NEW NORMAL #50 – (NO) MORE TEA VICAR

I must admit that I hadn’t really been paying attention to the numbering of this blog so I haven’t prepared any kind of fanfare for this fiftieth entry but my life is not really about fanfares right now so it’s kind of fitting. You see, I’m back at home in my cosy corner of Cornwall and taking things slowly is the order of the day but to start there would be to cut out a whole chunk of the story so let’s skip back a bit shall we?

When last we met, I was ten days post op (no, not that kind of op) and gleefully enjoying being freed from all wires, tubes and observations. Over the following four days I started to eat soup and then tackle solid food which I enthusiastically tucked in to before realising, very suddenly, just how limited my insides are. It turns out that 10% of pancreas and 10% of stomach fused together doesn’t give you a lot of room for storage so, without being too graphic, the marbles weren’t hanging around in the Kerplunk tube too long before scattering down to the bottom (pun intended). To help with this syndrome going forward, I have been prescribed a drug called Creon (seemingly pronounced by all the nurses as Crayon – “don’t forget to have your Crayons with your dinner” – but actually pronounced Kree-on to avoid confusion) and this is something I have to take with every meal and snack for the rest of my life or until some more convenient wonder drug is developed.

Getting my head around taking these tablets, managing my blood sugars by adjusting insulin and understanding the capability of my stomach to receive and process food was literally all I could think about because this is how you play the game. If you want to get out of hospital (and I did, desperately) then you have to prove that you’re a) not going to walk out of the hospital and straight in front of a bus and b) if you then do make it home then you’re not going to stick your fork straight in the toaster while trying to make soup out of all your medications. On a glorious Monday morning, wearing nothing but my pants and a smile, I was told by a be-masked doctor that all my vital signs were good enough for me to go home so I put the call in to my wife and she set off from Cornwall to extract me but this just meant we were on to the next level of the game; Discharge.

Now, for anyone who’s ever spent a night in hospital, you will know the false hope of those words “you can go home”. I got the good news at around 9.00am but wasn’t able to leave the hospital until around 3.00pm because I had to wait for exactly 2 things; 3 vaccines to be injected in to my arse (due to the lack of spleen) and a big bag of drugs to be delivered to my bed. This took around 10 minutes of activity and 4 hours and 50 minutes of lying on the bed listening to podcasts while somebody, somewhere else in the hospital needed a space on a ward which they couldn’t have because I was in it. It’s a well-known fact that wherever you go in to the NHS system, getting out of the hospital seems to be the hardest and most lengthy part of the process (proportionally speaking) but that is where the bed blocking begins and it is incredibly infuriating. Particularly because once I had the big bag of drugs all I had to do was complete a ‘customer’ survey on an iPad, hand it in at reception and then stride out of the hospital – blinking in the natural light and trying to suck in some fresh air once I had made it past the British Bulldog-esque line of smokers that seem to guard every hospital entrance and exit.

The extraction plan was that my brother and sister-in-law would collect me, whisk me away to their nearby house where I would wait to be reunited with my wife while having a proper cuppa and adjusting to the colours of the real world after my brief incarceration. There were, however, two surprises awaiting me. Firstly, when I slurped down my first mouthful of non-NHS tea, there was a worrying sensation. I didn’t like the taste. I checked that this was normal tea and normal milk but it was all above board and not an almond or oat in sight. Somehow, during the operation and subsequent fasting, my taste buds have changed and I no longer like tea – I’ll pause to let that sink in. I have subsequently discovered that all tea tastes rank to me now (sad face) and also the flavour of cucumber has changed forever and not for the better not to mention a new relationship with beans but more on that later if you have the stomach for it….

The second surprise was far more pleasant as my wife arrived with my little boy in tow which was completely unexpected but very welcome. Two weeks is the longest I have ever gone without seeing my little boy in person and there were some days that I couldn’t even face a video chat because it felt too much like staring in at the window of the sweet shop when it’s already closed for the day. To be able to hug my little boy (and his omnipresent favourite toy monkey Louis) was something I had, at points, not thought possible and I was still mentally prepared to wait another day so I was slightly blind sighted by this carefully arranged plan and we didn’t leave each other’s side for the rest of the evening – even the temptation of a walk to see Big Ben couldn’t tear him away.

The following day I was carefully strapped into the car with a pillow for protection between the seatbelt and my oh-so-tender midriff which still featured two fairly raw drain holes with bandaging on. Owing to various road closures we opted to leave via South London in all its pot-holed and speed bumped glory which meant the conversation in the car was largely as follows;

Me: “Ow” [plus sharp intake of breath]

Wife: “Sorry”

By the time we hit lunch time we had made good progress down the A303 (respectful nod to Stone Henge, longing looks at Longleat and always questioning just what exactly Wookey Hole is) and stopped to stock up. The service station looked like the employees had been using it as the set of a cheap post-apocalyptic horror film with chairs piled up, yellow and black striped tape everywhere and a definite sense of unease. I like to think I added a sense of realism by walking in with lymphatic fluid soaked into my t-shirt and shorts as one of the drain holes had burst open at some point on the journey without me noticing.

We drove on and I decided to eat my small pasta pot as we went with each small fork full being masticated to within an inch of its life, thus keeping to my new eating regime. This was all fine until we approached the infamous incline of Halden Hill near Exeter which any Westcountry driver knows presents a challenge for even the most powerful gearbox and, intriguingly, also makes my ears pop in the same way an aeroplane lift off does. This combination of new food in my new stomach and a long gradual incline did not mix well and the next three minutes were a blur of unfurling old nappy bags to be repurposed as sick bags, heavy breathing and my wife trying to keep her eyes, ears and all other senses on the road until the lay-by that we knew to be on the other side of the crest. I’m pleased to report that we made it and I managed to exit the car before seeing my lunch again and feeling far more stable for the remainder of the journey. This was all made far less traumatic by a little voice from the back seat of the car saying “Daddy, do you want Louis to make you better”? Sometimes all it takes is a little unprompted kindness. And a stuffed monkey.

~

I’ve been back at home for nearly three weeks now and there have been a flurry of phone calls as one arm of the NHS tries desperately to connect with the other and get me on the straight and narrow. I’m lucky, I have a great GP, a wonderful local nurse, a fantastic skin cancer specialist and a wife that cares beyond the point that would be reasonably expected of her. Throw in a community, friendship group and family that are always on hand and I’ve got multiple safety nets that a lot of people don’t have and I am acutely aware and grateful of that fact. Nevertheless, when your digestive system behaves like someone pouring cold lumpy porridge through a Kerplunk set with very little warning, that toilet seat can be a lonely place. I have learned that this is a common symptom for anyone following surgery of my sort and is called, wait for it, dumping syndrome. I’m just going to let that one float there for a second…as it were. Essentially, this is where your stomach lets food and drink pass straight through in to the small intestine which turns you in to a ticking toilet time-bomb and leaves you spending more time contemplating sound-proofing your bathroom than you had previously considered reasonable. It is not good for the maintenance of mystery or romance in a relationship.

I’m learning that little and often is the way to go with food, I have to cut down on liquid as this just greases the wheels a little too much and all the space left vacant by my much missed organs now seems to act as an amplification chamber for stomach gurgles which can be heard from the next room if the wind is blowing in the right direction. I am learning that although I need to keep my blood sugars in the right range, I also need to make sure that my body absorbs the right amount of fat and protein so despite wanting to eat healthily there is a very real need to eat rice pudding, jelly, butter and carbs in a way that I have tried to teach myself is wrong, wrong, wrong. Essentially, each day now is split between eating, digesting and pooing with only one of those being a pleasurable experience and so I find comfort in unchallenging TV (Cobra Kai and the Vicar of Dibley are the unlikely pairing that have seen me through these first few weeks).

As I settle in to my new regime of medication (20+ tablets and 5 injections a day at present) and face up to a future with a severely depleted immune system and eyes that are literally bigger than my stomach, I can only find it in myself to be grateful. Sure, I have down days; the agony of trying to digest a bean quesadilla knocked me out for half a day and caused the kind of rumblings that may have registered at the low end of the Richter scale in neighbouring counties. Nevertheless, I am here. I’ve seen my little boy return to school, my three stepchildren are back at College and there is a new bathroom suite piled up in my lounge which I may get to see installed. My thoughts are turning to seeing my son turn 6, celebrating Christmas and returning to something that resembles work for the first time in months. All of this makes me incredibly grateful to the friend of a friend who knew enough about my type of cancer to raise it with a surgical colleague who happened to be one of the best surgeons in the country at that specific type of surgery and was able to slice me open, remove the cancer and leave me with a life still to live.

For now, I just need to stabilize my weight, monitor my blood sugars, keep away from infections and give my ‘new gut’ time to adjust to life beyond intravenous fluids. I am managing to walk a few hundred metres a day but the way my torso has been reconstructed makes me want to hunch so relearning posture is on the agenda too and then maybe, one day, I’ll be able to pick my little boy up again which is a definite target. There are days when the sheer volume of tablets, injections, appointments and basic decisions on what to eat feels like too much but it’s not, it’s really, really not. A shake of the head, a deep breath and a lifting my body to sit up straight puts me right and if I need an extra boost then I just remember the days spent tethered to IV drip in a sweat box with only the sound of other men rejecting their food in one form or another for company. If I don’t get better, if I don’t deal with what’s in front of me then that’s where I’ll end up and with Covid making it’s sequel return in the Autumn of 2020 (‘this time it’s personal’) I want to spend as little time near a hospital as possible. Motivation? Check. Toilet roll? Check. Stretchy trousers? Check. Netflix subscription? Check. Stuffed monkey? Check. Let’s do this recovery thing.