THE NEW NORMAL #68 – IT’S ALL ME ME MEME

Hi folks. It’s been a while since I’ve written so I thought I’d check in with you. How are you doing? Did you catch the [insert sports] game? Did you see [insert popular TV show] last night? Has that rash on your [insert embarrassing body part] cleared up? So glad.

You see, part of the reason I haven’t written in a while is that I’ve been feeling a little self obsessed of late and that doesn’t sit well with me. The trouble is blogging is a fairly one-way process so it’s hard for me to hear your side of the story without asking fake questions and making up the answers (this is borderline worrying on a number of levels) and that just doesn’t cut it. So, I’ve taken to social media in a slightly passive sense in search of the perfect meme or memes to act as the response to the questions that roll around my noggin. But, before I get to that, let’s jump back a step.

I had yet another PET-CT scan a few weeks ago and – after the false start of having a hypoglycaemic attack and having to come back on another day – the whole procedure went well. What was even better was the news a few days later that my scan was clear. Not just clear, in fact, but any little areas of concern had resolved or shrunk to a such a tiny level that it’s not even worth writing about. Now, I’m not underplaying this – this is fantastic news. That’s two scans in a row that have shown my body to be existing without cancer and that’s pretty incredible considering where I was two years ago.

The trouble is, I took the call about my scan results while I was trying to hurriedly knock up a PowerPoint presentation before a Zoom meeting and aside from scribbling a few bits down on a Post-it note, I didn’t really stop to celebrate it. There was no ringing of a bell, no applause and no guard of honour as I was wheeled out of a hospital clutching flowers and smiling humbly. I told my wife and family, of course, and there was happiness and relief but I felt like I’d missed my moment to properly celebrate and so the window of opportunity passed and I went back to my search for the perfect meme.  

A few days later my wife and I finally went away for our wedding anniversary. We had planned to do this for our first wedding anniversary in 2020 but COVID happened, in 2021 COVID was still an issue and so 2022 became our first opportunity after three years of marriage. We found a tiny little bolt hole to spend the weekend in with no kids, no dog, no ‘to do’ list and a hot tub – time to chillax to the millax. Within an hour of arriving I had a banging headache but I took to the hot tub like a trouper and powered on through until I had to get out and developed uncontrollable shivering and shaking due to the change in temperature. What followed was a feverish night, some hallucinations and a little vomiting before waking in the morning and, you guessed, I had succumbed to COVID.

As usual my wife sprang in to action, sourcing a COVID test, thermometer and some basic food from the nearby supermarket all with an air of “I will care for you but only you could come away on a relaxing and romantic retreat and develop COVID for the first time ever…..and I will be disappearing to the hot tub as soon as I’m sure you’re alright”. It’s a reasonable reaction when you have to put up with my sick and sorry ass on a daily basis. Fortunately for me, COVID meant spending 12 hours in a comfy bed drifting in and out of consciousness while watching fragments of Joaquin Phoenix in Joker followed by six days of isolating in my bedroom whilst catching up on life admin. It’s almost as if having three vaccines and monthly doses of immune system boosting drugs kept me from the worst of the virus but that didn’t stop my family and friends being more than a little worried until I got the negative test result that I needed to be able to go on (fanfare please) an actual holiday…

That’s right folks, the whole clan took a flight from Bristol to Portugal and spent a week actually relaxing in actual warm weather. I’d love to share hilarious stories about getting strip searched because I was trying to smuggle insulin needles aboard a flight or my tiny stomach exploding on take off due to the change in cabin pressure but nothing that exciting happened. In fact, we had an incredibly smooth experience from start to finish which was exactly what we needed so if you’re looking for somewhere quiet to get away to then I can thoroughly recommend the former fishing village of Quarteira about a half hour drive from Faro. In fact, the only issue was that on approaching the airport in the early hours our drive was illuminated by the startling flash of a speed camera but, seeing as it was my wife driving, there was of course no film in the camera so she got away without a fine (bitter? Moi?).

So, I’m over the hurdle of having COVID and we’ve managed to get to another country and back which both represent pretty huge psychological barriers made of anxiety and barbed wire. However, there was still this nagging little noise buzzing away at the back of my mind that I could neither identify nor ignore. We landed, got our bags and made it to the car park bus before I switched my phone on and I saw the news that one of my fellow cancer battlers and old school friend had passed away a few hours earlier. This brought me back to earth with a bump and reminded me just how lucky I was to be essentially living a normal life as far as anyone else could tell. Sure, I might have suffered a few urgent trips to the toilet due to overindulging on Pastel de Natas during our holiday but I made it to the toilet on my own and it was during my holiday with my family – something for which I am hugely grateful.

The scrolling and searching for Meme wisdom continued with a little more intensity and desperation because I couldn’t get over the idea that I should be happier, more joyful or at least free of a weight that other people seemed to perceive as gone from my shoulders but that I could still very much feel. Then I found it, the holy Meme that explained why I felt the way I did:

Being cancer free does not mean free of cancer. It means you have to be constantly vigilant because melanoma is sneaky like that.

This was the one. You see, the first time I got the all-clear from cancer I had a very real sense that I had beaten the disease and somehow reversed the odds. But then it came back, and I wasn’t ready for that so now I can’t relax. Ever. I will need to stay vigilant, aware and slightly paranoid forever more and it was this realisation that allowed me to identify that small, irritating noise in the back of my mind – it was a beep. You know that really helpful beep that smoke alarms do every now and again to let you know that they’re still there and that you should check the batteries at some stage soon? Well, this is the ‘don’t forget that cancer could come back at any moment and there’s not a huge amount you can do about it’ beep and now I know what it is, I can’t unhear it.

I want to celebrate the little moments of success and I want to ring a bell in a hospital so I can put the video on Instagram but I’ve always had this inbuilt approach of thinking that if something has gone well then that just means you’re a step closer to something going wrong again. It’s not the kind of life approach that gets you a job at Butlin’s but it has probably stopped me from getting too giddy on the good stuff only to crash on the rocks of disappointment later on so I’m sticking with it for now. That said, if life gives you lemonade you’d better believe I’m going to use it as a mixer for some kind of fancy but drinkable cocktail so I’ll be making the most of what I’ve got, don’t you worry about that.

I think this is the point during which I’m supposed to impart some sort of parting wisdom but, honestly, I suspect my latest round of immunotherapy may have turned my brain to fudge considering it’s taken me three evenings to pull this blog entry together. I suppose all I’ll say for now is that if you or someone you know isn’t skipping naked down the road, bursting naked out of a cake or doing something else impulsive (and naked) immediately following a clear set of results then don’t give them a hard time. I mean, you wouldn’t start high fiving strangers in the street after narrowly avoiding being run over by an ice cream van and you wouldn’t immediately start setting off fireworks after a murderer failed to strangle you in your sleep. Sometimes you just want to get back to how things were and, for me, that means going to a few gigs, getting the odd lie in on weekends and enjoying tea at the perfect temperature. Stick that in your bell and ring it.

PS Bonus points to anyone who remembers the song that the artwork at the start of this piece belongs to. I had it on cassette single so it’s long gone now but it was a great little tune.

THE NEW NORMAL #67 – THREE P’S IN A POD

I attended my son’s parent’ evening this week and, on reviewing his writing work, was reminded of the classic ‘rule of three’ in writing that has inspired the arrangement of this latest blog entry. I was also intrigued to take a picture of his drawing work which adorns this post – he insists it depicts the tip of a fingernail, but I’m not convinced considering how much time he spends walking around saying penis, buttocks, peanuts and bum hole at the moment. He’s a delight.

Anyway, on to the boring health stuff. That’s what you came here for after all, right?

The first P is for perspective which has been forced down my throat a little lately but sometimes you need life to slap you around the face with a giant novelty hand while it screams in your face. During the recent storms, for example, we had a power cut that lasted around 46 hours which sucked because it was cold and our house relies pretty heavily on electricity due to not being connected up to mains gas. We fished out as many Ikea tealights as we could and cursed ourselves for not replacing the batteries in our torches while we hastily lit a fire and nearly killed ourselves trying to boil a pan of water on a portable barbecue to create the worst cup of tea I have ever had that didn’t come out of a machine. By the second night we’d borrowed a gas camping stove from some friends and cooked up a feast of curry wurst and chicken salad followed by around four litres of distinctly melting ice cream.

This was not the start to half-term that we had wanted and it left me in a grump – the kind of grump where you wander round saying things like “why do bad things happen to good people?” and so on. Within 48 hours Vladimir Putin had invaded Ukraine with Russian troops and perspective had given me a full palmed slap around the face. Seeing the rolling news footage of people being displaced from their homes, young people taking up arms to protect their country and desperate goodbyes made me feel incredibly grateful for our curry wurst and sloppy ice cream. Putin’s psychotic war crimes have given the world a wake-up call on a huge scale but it also gave me an opportunity to refocus on all the good things I have in my life.

A few weeks later, I attended hospital for my monthly dose of expensive drugs and I had let my perspective guard down so was once again in a grump for one reason or another (I can be quite grumpy, you’ll be stunned to hear). I sat, got my arm prepped and was hooked up to the drip as usual before watching an endless stream of meaningless videos on my phone to pass the time. Towards the end of my session, the ward had all but cleared out what with it being 5.00pm on a Friday evening and the nurses were busily cleaning up each station ready for the next day. One other patient remained in the corner having an agitated conversation on the phone before one of the nurses came to check that they had everything they needed before they left. Without wanting to eavesdrop, I quickly became aware that this person didn’t have anywhere to go after their treatment but was stoically adamant that a gym membership would give them access to washing facilities and they could sleep in their vehicle overnight.

Once again, perspective had limbered up and slapped me across the chops to stop me from wallowing or falling into a pit of self pity (a pity pit, if you will). What did I have to be grumpy about when I had a warm home to go home to with a loving family and meal waiting for me?

As I left, I looked back over my shoulder to check I had everything that I’d brought with me and noticed a small but very noticeable brown smear on the chair where I’d been sitting. Had I shat myself and not realised? Is that what my life had come to? Was I suddenly incontinent? What was the state of my trousers? Then the logical part of my brain kicked in and remembered that I had dropped a chocolate peanut on to the seat that had clearly melted underneath my booty. I didn’t explain this to a nurse because my brain was too busy thinking slowly so there’s probably a note on my file somewhere that says, “Roland may now be shitting himself at random and not noticing – recommend adult nappies”. You have to laugh though, right? Right?!?

The second P stands for Physio as my rehabilitation into the world of doing things with my body continues apace. In my second session, I was put on the treadmill to do one of those walk-run-walk circuits which surprisingly resulted in me managing about 2km in 20 minutes. There’s nothing funny about this story I’m afraid but it did represent a huge step for me in terms what I could believed I could do with my body which felt like a huge weight off my mind. For around 18 months I have been so scared to push my body out of my comfort zone for fear of popping a lung or my eye popping out but as I gradually transformed into a big sweaty mess I felt the familiar breathlessness that I hadn’t felt for a long time. As regular readers will know, I’ve never been one for exercise for the sake of it but it really did feel good to push my limits a little.

Following this session, I visited the Diabetes clinic for the first time since I started using my Libre 2 arm patch and although it was good to get some more advice on managing my blood glucose levels, the session did have the feeling of being called to the Headmistress’s office. Now, you should understand that I hadn’t necessarily done anything wrong, but I had forgotten that when I set up the app with my blood glucose scanner, I had given the hospital permission to see my readings at their end as well. There is no getting away from the fact that my levels have been higher than they should be (and there was no hiding that from the staff) but I wasn’t prepared to jump straight in to the “what are you doing wrong?” conversation. I say jump straight in, this conversation was preluded by 15 minutes of trying to check my blood pressure which used three different cuffs, two machines and one very confused nurse. Eventually, the nurse managed to get a reading and with a puff of her cheeks said, “well, 64/100, any lower and you’d be on the floor”.

A couple of weeks later, back at the Physiotherapist, I was asked to get back on the treadmill and hold on to the heartrate monitoring handlebars. Initially, I was expecting to get a high reading because I was already stomping on the treadmill but mainly because I got an electric shock off the handlebars (seriously, I had to check myself for involuntary soilage again. All clear you’ll be glad to hear). Again, however, my super relaxed heart was confounding the Physio guy who kept muttering things like “these things are never 100% accurate” and “still, that’s impressively low”. I’ve come to the conclusion that my heartrate being low has helped me survive the traumas of the last few years but I’d also quite like to have a special badge or hat that avoids me having to have these conversations every time I have an appointment. I’m probably too super chilled out to go and get a special hat made though.

For the last P, we’re heading to Pox town. Just to make things more interesting, my little boy woke up with chicken pox this week and, after checking with my Cancer Clinical Nurse Specialist that this wasn’t going to cause me any problems, we set about preparing him for a week of itching. The thing is, he’s been an absolute legend and has hardly scratched at all which is a miracle considering the fact that his body currently looks like he’s been rolling around on the printer in a dot-to-dot book factory. I hate seeing him ill and I honestly don’t know how people with properly ill children cope but he has a stoicism far beyond his years that makes me both proud and sad. The pride is obvious but the sadness comes from the fact that his stoicism comes from a place of experience having seen me in pretty deathly situations. And he just rolls with it. I mean, sure, he milks it for every bit of sympathy he can get but he just rolls with it, and it floors me.

So, we find ourselves full circle back in the realms of perspective – you just can’t feel sorry for yourself while your little one is doing his best impression of a leper watching a constant stream of the Simpsons with a vacant look on his face. Moreover, if you just lift your head up and look around every once in a while, it’s pretty hard not to find reasons to feel better about your ‘lot’ in life but it can take a little more effort these days. The price of everything is going up, the majority of world leaders seem either insane or inept, COVID looks to be back on the horizon and Danny DeVito is nearly 80 which means he’s probably not going to be around much longer. On the flip side, Spring is starting to make an appearance and the majority of the world seems to be uniting behind Zelensky in spirit if not much else so there are glimmers of hope to be found if you have the strength to step back and refocus on the horizon. And if all else fails, try channelling the stoicism of a seven-year-old and just watch your favourite TV show on a loop until you feel better.

THE NEW NORMAL #66 – LETS GET PHYSIO

Howdy folks. Things have been moving along apace so I thought I’d stop and write things down for your enjoyment as is my style these days. After a rocky start to the year and the kind of weather that makes you want to crawl inside a giant dumpling and hibernate for the winter, things started to pick up again but before we get on to that I wanted to regale you with a minor detail that I omitted from my previous post.

You see, before we got to our destination for the funeral of my friend Debbie, we stopped at a motorway service station and settled in for some dubiously non-descript Asian cuisine from a vendor called something like Chop Stix or Oodles of Noodles or something. It was at this juncture, hours from home and starving, that I realised I had left my Novorapid insulin pen way, way back in Cornwall. Regardless of the last few years, my instinct is still to think positively and hope that it will be enough to get me through but, fortunately, I have married an actual grown-up so I was forced to take some action.

We had to learn this next bit the hard way in the midst of what movie makers would call ‘mild-peril’ so just in case you or someone you know finds yourself in a similar situation;

  1. Find out where your nearest open pharmacy is and check that they’re staying open – we were doing this in the early evening of a Monday night so this was a genuine concern and the good people at the Link Pharmacy in Maidstone came to the rescue.
  2. Call 111 and explain the situation. They will ask you a bunch of annoying questions like “Where do you live?”, “Why are you in a Premier Inn in Maidstone on a Monday night?” “Why are you an idiot who leaves insulin behind at home?”, “Which Premier Inn in Maidstone are you in? but eventually they will confirm that you need insulin (duh) and that you can have some (yay) and then they send a code through to your nominated pharmacy.
  3. Call the pharmacy and tell them to look for the code, they’ll ask you a bunch of questions too but then hopefully they’ll have what you need and you can go and collect it.
  4. Gleefully inject yourself with insulin, feel your blood glucose levels drop and get on with your life.

In all seriousness, 48 hours without my meal-time insulin would have signalled bad times on the horizon but, once again, the NHS comes through with a slightly clunky but ultimately efficient process which is free at the point of use. Another day that I’m happy to be living on this side of the Atlantic.

So, back to the better bits of 2022 in terms of my health and the progress I’m making. First up, I’ve been waiting since July 2021 for a referral space to open up so that I can have some physiotherapy to help me recover from my operation in August 2020. I am not, for one second, going to moan about the wait (because NHS strain + COVID pandemic x Tory mismanagement = a nightmare for everyone) but I do sincerely hope that the length of my wait means that those in greater need have been seen already – you know, people who were chewed up and spat our by sharks or went wing-walking near a wind farm.

Usually, with these kind of appointments, you get a bit of chat, a dollop of sympathy and then some poorly photocopied sheet that depicts a few exercises that you can do at home to strengthen your core. The chat, sympathy and exercises were all present and correct but I didn’t get a handout so I had to remember them all the way home like a proper adult before writing them down as, I quote;

“Belly in, balls up, hold it”.

Weirdly, this makes sense to me and there’s a whole load of leg stuff that I have to do as well but if you’re ever around my house and find that note then rest assured, it’s not some sort of instructional guide for a camp cowboy showdown.

The best bit about physio, however, was a moment of absolute epiphany delivered by a guy with a razor sharp crease down the front of his trousers. For those that haven’t been following this whole sorry journey, In August 2020 I had a number of organs wholly or partially removed and, during the recovery period, there were instances of me falling over or blacking out with dizziness. At the time, this was explained with low blood pressure and issues with standing up quickly, but there was always a sensation that this wasn’t just ‘head’ dizziness but also that my body wasn’t quite doing what it should be. And then came the epiphany…

The way it was explained to me is that all of your organs send messages to your brain all the time, telling you where you are in relation to the space around you but also sending other information about what your body needs. Somewhat like one of those weather stations you see advertised in the same catalogues that also sell bird feeders and extendable litter pickers, your body is picking up on and then sending back messages all the time. Take that away and your body has to adjust to operating with less information which can take a little time but if you aren’t aware that you’re having to adjust then that’s a confusing experience. Throw in the loss of around six stone in weight and essentially, I’ve been driving around in an automatic sports car with no dashboard whilst thinking I was behind the wheel of a manual pick-up truck with free Wi-Fi. It’s no wonder I hit the odd lamppost.

With this bombshell still rattling around my noodle, I headed home with a few exercises to do and a follow up to come weeks later. The aim is to build some strength, regain some physical confidence and then see what else I am capable of. I’m not entering any weightlifting competitions or taking on any hiking competitions, but a bit of garden work would be great when the weather sorts itself out.

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A week after physio, I was back at the same medical centre for my annual diabetic eye screening which was entirely uneventful from a health point of view (the backs of my eyes still look like mystery planets from another solar system). However, this appointment did kick off a strange few days where I had a taste of what it was like to be famous on a very small level. Whilst waiting in reception for the hideously stinging eye drops to do their pupil widening worst, I got chatting to an elderly lady who very quickly recognised me as the author of that book I wrote. She had read it, enjoyed it and was keen to discuss it at length which was very flattering and a good ice breaker considering there was nobody else there.

The following day, I had to make my weekly visit to the local GP to pick up my big bag o’ drugs prescription and another older lady recognised me, complemented me on the book and thanked me for writing it. Another day later, while having my monthly blood test prior to treatment and both nurses complimented me on a recent Instagram post (@bigtoecancer, come follow me) related to things that keep me going from day to day. And then, on the last day of the week, I found myself back at Derriford for my monthly shot of immunotherapy which is normally a fairly solitary and quiet experience. On this occasion, however I was at one point surrounded by four nurses who had read either the blog or the book, quizzing me on whether I was actually a journalist, how many copies of the book I’d sold and if I would be writing more.

So, I’ve cornered the elderly lady and healthcare professionals side of fame (me and Brad Pitt have that area sewn up) and it’s honestly pretty nice. I know I’m not being hounded by paparazzi or having to leave public buildings by the back door but meeting genuinely nice people who are genuinely nice about something you’ve written after a genuinely horrible few years is, well, genuinely nice. Genuinely. All I need to do now is work out how to sell more books to men and younger people. I’m thinking about taking to Tik-Tok and hanging around at Golf courses or B&Q but that has nothing to do with selling books.

The downside to this minor celebrity status was that the one poor nurse who only knew me as a patient couldn’t actually give me the information I needed about some suspiciously unusual potassium levels in my blood tests. After a few failed attempts, she managed to let me know that a retest showed my levels to be fine but it was a nervous few hours after being told “potassium levels out of range can create a risk of cardiac arrest”. It seems potassium levels can change in your blood if they aren’t tested soon enough after being removed from your veins so this is a fairly common thing – every day is a school day, huh?

The final thing of note I wanted to mention is that I had to take my seven-year-old son for his first COVID vaccination on Saturday and, having had a flu jab in the last few months, he was somewhat apprehensive. My wife tried some classic parental pacification with “Don’t worry, it’s just a sharp scratch, just like your flu jab”. It did not work. “It doesn’t feel like a sharp scratch, it feels like somebody is putting a needle in you and leaving it in there forever”. He’s right. I have lost count of the number of times that I’ve had a needle put into my body accompanied by the words “sharp scratch” and you brace for pain which duly comes. But it’s not a scratch, it’s a needling. It just took a seven-year-old to point this out. Then again, I don’t expect any nurse has ever started a successful procedure with “Alright then, here comes a needle that I’m going to put in to you and it will feel like it’s in there forever”. It might work as a chat up line though….

The book is still available (it will be forever but don’t delay) to buy at www.rolandmonger.uk

THE NEW NORMAL #65 – GOOD GRIEF

It has been over two months since I last wrote on this blog and I really, really wanted to say that it’s all been sunshine and roses, sex, drugs and rock’n’roll or peaches and cream since last we spoke but it has been something of a mixed bag. Many have said that reading my blogs (or the book) has been like a rollercoaster of emotions and I even did a post about the similarity between my life and various fairground rides but the last six weeks especially have been like riding a rollercoaster that’s on fire and the spotty teenager in control is too busy swiping through Tik Tok to notice.

Things started on the up as book sales were going well* and I had been able to get some decent local coverage to help spread the word so that was good for the ego. Then I was given a month off from my immunotherapy treatment which was presumably for good behaviour as well as the fact that I was absolutely shattered and had the joint pain of an overworked, arthritic donkey. All I had to do was endure one more PET-CT scan between Christmas and New Year to complete my medical year. Simple, right?

I went to the portacabin in the care park on a cold and wet December morning and all was going well until the required pre-scan blood sugar test. I’m sure I’ve been through this before but just for any late comer; the PET-CT scan requires a bit of radioactive material to be injected into the patient’s veins which is combined with glucose which, of course, pushes up the patient’s blood glucose levels. To avoid giving the patient hyperglycaemia, therefore, they are asked to fast for 6 hours before the procedure (4 hours if you’re diabetic). With a 10.00am appointment time, I had to wake myself up early, take my morning meds and then scoff down a couple of biscuits which was all I could stomach at the time. It was not enough.

By the time I had been prepped and given the spiel, I could feel my body doing its own low sugar alarm which usually involves a little light disorientation and tingling all over like mild pins and needles in every bit of you. Sure enough, the blood glucose test was low and the nurse looked a little panicked by this – it obviously wasn’t a common occurrence. There were slightly tetchy calls made to try and locate a doctor who could decide whether this scan could go ahead but to no avail so I was asked the question every patient wants to hear, “Do you think it’s safe to go ahead with the scan”?

I made the decision that it probably wasn’t safe and munched on the complimentary custard creams like someone who had been wandering lost in the Lake District for a week with nothing but some Kendal Mint Cake to suck on. The second swipe at the scan, two days later, went off without a hitch and I’m pleased to say that the scan came back clear as could be expected. Anything troubling my specialist from the previous scan had either disappeared or was ‘resolving’ (shrinking for us non-medical folk). It was a huge relief and I was glad to be going in to a new year with a relatively clean bill of health.

In and around all this medical mundanity, there was a moment which completely shook my world to its core and stopped me in my tracks. Without going in to too much detail, I found out that one of my oldest and best friends had very suddenly and unexpectedly been killed in an accident. As is my way with these things, having been told the terrible news, I carried on in to work and ran a workshop because I don’t cope well with bad news and too much time to think about it. This week I attended the funeral along with so many other grieving friends and family that it did lift my soul a little but my friend was gone and my heart is still very much aching for her.

Debbie and I had been friends since we met at infant school some 36 years ago and she was always there in my life and vice versa. She was one of those people that never stopped trying new things, never stopped moving forwards and never stopped smiling (on the outside, at least). Where I was worried about holding down a decent job and getting a mortgage she was joining an ice hockey team or doing bar work to make her way across Australia. I was always immensely proud to be her friend but also hugely envious of the freedom and determination with which she lived her life.

I’ve done a lot of thinking since hearing that Debbie had passed away. Thinking about the injustice of death and whether its better for loved ones to watch someone deteriorate until they are unrecognisable from their true self or have them snatched away in an instant without having the chance to say goodbye. These are not new thoughts, the last few years have meant that me and mortality have been locked in an endless game of mental chess (incidentally, a game that Debbie and I used to enjoy playing together). I still don’t have an answer, I don’t think there is answer. Whichever way it happens, losing someone you care about rips a bit of you away and that hole gets filled with grief and, if you’re lucky, enough good memories to see you through the hard times.

So, I’m entering 2022 with mixed emotions but a renewed sense of perspective, a determination to spend my time with the people that really matter and a sense of duty to my departed friend to enjoy what I have got in front of me rather than worry about what has passed or what might happen. I also need to crack this diabetes management lark and find a replacement for emotional eating. I hardly drink booze, the only drugs I have are prescription ones and I’ve long given up on the idea of finding a form of repetitive exercise to help me deal with stress. I used to turn to comfort eating but with diabetes and a tiny stomach, it’s hard to achieve that same level of satisfaction without making myself sick. 2022 then, the rollercoaster continues but, as Debbie would say when things got a little bit hairy, “It’s fiiiiiine”.

*Copies are still available online from www.rolandmonger.uk if any one of you doesn’t have a copy yet.

The New Normal #64 – Wham, Scan, Thank you Ma’am

Sooooo, yeah. Quite a lot has been going since last I wrote so we’re in for a long one if you want to make a cuppa or go to the loo before getting on with this. First things first, the book came out and I’m humbled to say that I’ve sold hundreds of books to people all over the UK, Canada, France, Germany, Australia and New Zealand. It genuinely is humbling to have created something positive out of something pretty horrible and then have people not only buy but then actually read it rather than use it as a door stop or just to prop up a table. So it’s a big ‘thank you’ to all those that have purchased the book so far but also a ‘don’t panic’ to those who haven’t got a copy yet, there are still plenty left and details of how to buy one are at the end of this set of ramblings.

The next big thing was that after another round of immunotherapy, my lovely wife and I decided it would be a great idea to drive to Windsor with the kids, stay in the Legoland hotel and then ‘do’ Legoland the next day. We were so well planned that we even managed a dip in the hotel pool upon arrival which was going swimmingly (pun achingly intended) until one of the other hotel guests’ kids had a ‘code brown’ incident and the pool had to be evacuated. We ate like royalty from the reduced section of the nearest M&S food store whilst sitting on a pirate themed bed and life was good.

The next morning we entered Legoland like a small band of marauding Vikings and then…..we queued. We queued like good little British people and spent more time standing in a row than the time we spent on any of the rides which is, I suppose, par for the course but COVID has added an extra level of dehumanisation to proceedings. Attached to the snaking queue guidance barriers were large sheets of flimsy, clear perspex to stop you coughing all over the people either side of you which made a certain amount of sense. However, on a cold and misty October morning this just gave us the sense that we were in some sort of refugee processing centre and, on more than one occasion, there was a sense of relief when we made it to the actual ‘fun’ (i.e. roundy roundy thing or the log splash thing or the uppy downy thing). We thought the shop might be a brief respite but the bright lights, white decor and (again) the queues made this even more tortuous and overwhelming for me let alone my little boy. And don’t even get me started on the £7 hotdogs….

After Legoland we had decided to visit London to see friends, family and, inexplicably, go to the M&M store for the third time in my life. After all the queues at Legoland, my lymphedema was causing my leg to feel more than a little dead so my mood was grumpy but we did manage a full rotation of the London Eye without my wife screaming (her fear of heights, it seems, is not just real but very palpable) and some tasty meals out. I’m not usually one for giving you the full run down of my life but the simplicity and freedom of these few days was joyous but also a painful reminder of how little energy I actually have and how long it takes me to recover. I’m learning to lean in to the recovery and understand the importance of rest more and more but I still find it hard not feel the guilt of not doing anything when your partner is wading through a pile of dirty washing and trying to clean up all the various ‘gifts’ the cats have left us while we were away.

The least popular souvenir we brought back from London was a stinking family cold (although the Big Ben pencil sharpener was a close second) which had us all reaching for the reassurance of the LFT test (all negative I’m pleased to say). This made the return to work slightly more of a chore and, again, guilt played a part as I had the battle of whether to go to work and risk infecting my colleagues or stay away and risk looking like I wasn’t pulling my weight. More pressingly, however, I had a double header of medical appointments lined up for the Wednesday which started with a visit to Southway medical centre – a far less glamorous or spectacularly situated venue than my previous Lymphedema clinic at Turnchapel. Nevertheless, all the other factors remained comfortingly the same – “ooh you’re very young to have lymphedema”, “is your blood pressure normally that low? [104, bp fans]” and “would you prefer to be called Ronald or Ron”. I kid you not. Long story short, my leg is in fine shape and I don’t need to go back for another year unless anything else goes wrong in the meantime.

The headline act of the day was the MRI scan which I’d been waiting about a month for and, as an experience, it did not disappoint. Due to COVID, underfunding by the government and an aging population (plus a reduction in staff caused by Brexit), there’s a right old backlog of people waiting for scans and operations which meant I found myself pressing a door bell on a fancy storage container wondering if I was going to get a scan or be trafficked to North Korea for labour or body parts (joke’s on them if it’s the latter, I hardly have any left). It comes to something in your life when walking in to a storage container in the car park of a hospital, next to a helipad, to let strangers put needles in you is not only the norm but also a significant highlight of your week.

This was only my second MRI scan, believe it or not, so I was feeling pretty confident (borderline blase) about the whole affair. However, I can safely say that this was one of the most horrible experiences of my medical journey and left me feeling like I’d been through a period of torture designed to make me give up state secrets just to make it stop. If you’re keen to recreate the experience then I would suggest the following steps;

  1. Lie on your bed inside a camping sleeping bag that is slightly too small for you.
  2. Have someone you trust place three large hard back books on your abdomen (preferably large atlases or books of 70s photography).
  3. Then ask the same person to place a small coffee table over your head so that the underside of the table is about 1.5cm from the tip of your nose (a cardboard box would do if no coffee table is available).
  4. Have a pair of large, over ear headphones placed over your ears.
  5. Every 30 seconds you must breathe in, breathe out and then stop breathing (i.e. hold your breath) for 12 seconds.
  6. During each 12 second period have your trusted companion blast your head with a different instrument preset from a late 80s/early 90s Casio keyboard. I’d recommend starting with repeatedly pressing the electric guitar sound, followed by banjo and then letting some creativity run riot.
  7. Repeat steps 5 and 6 for 45 minutes.

There is another step to the real MRI scan but I couldn’t quite work out how to replicate having a tracer pumped through your veins without having to add a genuine health and safety warning to this article. In all serious, it is a disorientating, nauseating and headache inducing experience which I wouln’t wish on anyone but, before you know it, you’re having your cannula removed and being shown out in to the carpark from whence you came where you can eat again after four hours of keeping your stomach empty for the benefit of the radiologist.

As always, there’s a wait for the results. This is the space that scanxiety ramps up and buzzes in the back of your ear like tinnitus so you try to distract yourself from the sound by doing things to take your mind of it. I did some work, I ate some tapas, I watched a musical interpretation of the classic children’s story Stick Man and I watched my beloved Argyle on TV for the first time in ages but still that metronomic, nagging noise is there in the background to remind you that you’re waiting for something and you don’t know what it is or when it will arrive. It is a dreadful feeling in the most literal sense of the word and I know many people reading this will identify with that but for those of us in it for the long haul you do, sadly, become used to it and a little desensitised.

Fortunately for me, I only had to wait five days to get the results and they were good. I know this because when I was being told the radiologists report over the phone my only responses were “OK” and “cool” which caused the skin cancer nurse specialist to have to clarify “Roland, this is good news I’m giving you”. The upshot of the scan was that the marks causing concern on my liver were old marks that were, more than likely, caused by my gall bladder operation back in 2016, the marks on my lungs are still consistent with sarcoids and, most excitingly, there is no sign of metastatic disease in my abdomen. So I put the phone down, I told my wife the good news, we hugged and then I tried (really tried) to pause the world right there and then. Stop the world, I want to stay on.

Don’t get me wrong, I am so happy that I don’t have to fight another fight right now and as much as I had prepared myself for the worst, I’d been hoping for the best because that’s how I’ve lived the vast majority of my life. The trouble is, I have been told fairly confidently by three different doctors at three different times that I was about to die and each time I have lived. Either I’ve made a deal with the Devil in one of my less lucid moments or I’ve just used the rule of ‘bad things come in threes’ in the most extreme way a man could without climbing a mountain and jumping off in nothing but a mankini.

I’m going to enjoy a Christmas without having cancer hanging over my head like a hideous bunch of mistletoe and maybe I’ll lean in to the whole Whamageddon thing this year and actually enjoy the festivities without the shadowy spector of death lurking in the corners. In all reality, however, cancer is more than likely to come back at some point, such is the state of my body, so the fight goes on but maybe this time I’ve got a bit of a headstart on the fight. I’ll probably take a break from this blog until 2022 for now though because I hope with every fibre of my body that nothing of any note will happen in the next 8 weeks (he says, tempting fate in a way that will make his own mother wince with superstitious pain).

To order My Big Toe Is Killing Me, visit www.rolandmonger.uk. Books are priced at £6.99 each with 20% of profits going to St Luke’s Hospice.

THE NEW NORMAL #63 – STOCK TAKE

In my short retail career (1 year at Lidl and a summer working in the site shop of a caravan park) I had to undertake a few stocktakes and, for some reason, I always quite enjoyed the process. Maybe I’m boring but I just liked the simple process of counting how much stuff there was and then writing it down – as well as pinching the odd sweet or magazine and not writing it down. I still do it from time to time now – not counting sweets but just taking stock of where I am in life and what I’ve got to show for my time on this earth. Right now, I’m quite focused on the fact that in just a few hours I’ll officially release my first book (the one based on this blog, I might have mentioned it…) and that feels like a good time to take stock of things before that part of my life changes forever – you can’t unpublish a book once it’s out there, just ask Hitler.

The transition into being an author has been the subject of some fascination for my little boy who keeps asking me if I’m going to be famous, how many more books I’m going to write and if someone will make a film of my book. He even went to school dressed as himself carrying a copy of my book on the day that all the kids were asked to go in dressed as a character from a book. Even the half-page coverage of the book in the Cornish Times accompanied by a picture of me, Jake and the dog got the little lad excited, stomping around the house chanting “I’m in the paper, I am famous” with a big smile on his face. I’m just glad that someone born after 2010 knows what a newspaper is.

In the meantime, we’ve found ourselves in the centre of our own mini COVID outbreak as the two youngest step-children succumbed to positive test and had periods of isolation without any real symptoms. Once we all tested negative again, I couldn’t help but feel like I got away with something that I shouldn’t have like not paying for parking or not getting charged the full amount for your meal at a posh restaurant. You’ve got to take those little wins in life, especially when you’ve had a series of losses – they definitely count as a tick on the stock take list of life.

By way of escape from ‘the infected’ as I enjoyed calling them, I took the opportunity of an invitation to give the patient’s view of cancer treatment at a conference for the MySunrise app that I have been supporting for a while now. This meant a trip to Exeter and a great excuse to visit my sister which was all well and good until I arrived after my 90-minute drive up from Cornwall. To understand what went wrong, you need to be aware of my previously documented increased prevalence for flatulence (aka I’m a one-man farty party) which I try my best not to inflict upon others. So, when I had 90 minutes in my car on my own I turned the party up to 11 and really went for because there was nobody else there and, as such, was a victimless crime. However, upon arrival I had to climb the three flights of stairs to my sisters flat and, being a responsible citizen, I popped my face mask on. My face mask that had spent that last 90 minutes in the back pocket of my jeans. Ground zero. It has been a long time since I’ve climbed stairs that quickly and even longer since I’ve done it trying not to breath in or, even worse, thrown up in my mask. I was, it seems, the victim of my own crime. A big red cross on the stock take.

My survival of this ordeal give me a renewed vigour the following morning and I decided to get a head start on some Christmas items before I arrived at the conference. This included essentials like a bottle of port, four Cadbury’s selection boxes (for the kids, obviously) and the holy grail that is sausage meat for stuffing. I had achieved my mission and headed for the conference at the business park on the edge of Exeter ready to impress the audience, answer a few questions and then get home. This all went to plan until moments before the presentation when I reached down into my bag to pull out a bottle of water and produced the aforementioned sausage meat. For a split second I panicked (I do this a lot in small ways) and nearly considered taking it up to the speakers area to make a joke of it but then my rational voice (which sounds a lot like my wife’s voice) kicked in suggesting that standing in front of a group of medical professionals with a tube of sausage meat probably wasn’t the best way to get yourself taken seriously. I didn’t brandish my meat in front of the gathered group, fortunately, I’ll take that as a win for becoming more mature in my decision making (although with a note for improvement that maybe taking meat products to conferences is behaviour best avoided unless I’m attending a butcher’s conference for some unlikely reason).

Alongside all these ups and downs, I’ve had another set of treatment preceded by a trip into Oncology that was requested at the last minute. Alongside this my wife got me a couple badges from an online independent shop, one of them with the word ‘Scanxiety’ on it and I really felt seen. However, I now need a badge that somehow sums up the anxiety of being called in to hospital rather than having a telephone consultation as has been the norm for the last year or so. Why did they want to see me? Why wouldn’t a phone chat be enough? What terrible news were they going to impart that would surely require me to receive a group hug and maybe a bit of a lie down on a medical bench? It turns out they just wanted to see my face and my fears were unfounded although we did have a long chat about some speckly shadows on my liver that needs looking at. A neutral mark on the ol’ stock take I think and neutral is alright by me.

There are still potential negative marks on the horizon with more treatment on its way and there’s still the small issue of the elusive MRI scan to come (I’m currently one of the thousands in the NHS backlog caused by COVID/Tory cuts/Brexit fuelled talent drain on the health professions). Also my wife succumbed to the mega-cold that’s going around and our cat Tango got in a serious fight with a squirrel and ended up with a hole in his throat that looked like he might have to walk around with a tiny electrolarynx and a mechanical “mee-ow”.  However, a whole bunch of other positives were added to the list by seeing my little boy turn 7 (and surviving despite the 4.30am wake up call), getting back into the office (and surviving), going on a 4.5km walk (and surviving), walking the dog on my own (and both of us surviving) and attending an all day festival full of music, people, food and all the good things in life (and thriving). These are all things that looked either impossible or at least improbable at points in the last 18 months so as stock takes go this is looking pretty positive. Now, where did I put that bag of gummy bears…..?

To order My Big Toe Is Killing Me, visit www.rolandmonger.uk from Friday 15th October 2021. Books are priced at £6.99 each with 20% of profits going to St Luke’s Hospice.

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

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

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

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

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

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

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

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

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

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

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

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

THE NEW NORMAL #61 – THE WIND AND THE PILLOWS

There has been a lot going on in the last few weeks and I’ll do my best to update you on it all in the coming paragraphs but before we get into the medical details I wanted to address a serious issue that is affecting every in our household at the moment; wind. Farts, guffs, pops, toots, silent-but-violents. Whatever you call it, when your digestive system has been severely truncated, and your diet has had to change in response to that change then it can introduce a fair bit additional wind into the system. Throw in a cocktail of (prescription) drugs, shake it all around and voila, you’ve got yourself a potent combination.

This has been the case for around a year now (and let’s face it, the warning signs were there before) which means the family has slipped into a pattern that includes a new system of warning signals, heavily ventilating the house (with added COVID avoiding benefits) and generally walking around with your t-shirt hooked up over the nose for extra protection. We have also invested in a number of wax melts, joss sticks and some of that V.I.Poo spray for excursions but nothing can take the edge of my toxic emissions. I even offered to accept some of those ‘filtered’ underpants as a birthday present but my long-suffering wife told me not to be silly as she stuffed wedges of cheese up her nostrils before strapping on a snorkel.

One of the sexier birthday presents that I did receive (and, for context, I got a poncho) was a knee cushion to help me sleep without waking up feeling like I have a serious WD40 deficiency. This looks like a giant foam tooth which straps to one leg and forms a squishy barrier between your knees which works a treat. The only remaining problem was that I kept waking up with a frozen shoulder that had a limited range of motion and I self-diagnosed this to be a consequence of no longer having the significant padding on my body that I used to have (did I mention I’ve lost loads of weight? Yeah, I’m pretty skinny now). As a result, I have taken to hugging a large pillow as I sleep so that my arms don’t get folded too flat across my chest which is what causes the frozen sensation.

Now, I hear you, “what’s this got to do with cancer, Roland? We only come here for the cancer chat”. Well, my point with these two stories is that whatever you’re dealing with as a part of cancer or cancer recovery it is likely to be unique to you and this shouldn’t be overlooked. Just because your symptoms don’t fit in with the ‘typical’ cancer patient doesn’t mean they aren’t real and making yourself comfortable and giving your body the best possible chance of recovery is absolutely vital (and this absolutely involves good quality sleep and not waking up feeling like a Robocop who’s been left out in the rain). It has taken me a long time (too long) to find the confidence in my own body to trust what it’s telling me but now that I have established that relationship I can afford to be all preachy to everyone else…..sorry, thought I was an Instagram influencer there for a second. Just listen to your body and if you don’t understand what it’s saying then ask a doctor to translate, OK?

The medical side of things has been quiet, quiet, quiet, hectic so I’ll skip the quiet stuff and let you know about the juicy details. I got to go in to the Oncology department and meet with my team face to face for the first time in a year which actually felt good albeit still an incredibly humbling place to visit. The chat was generally about how I’m feeling (achy and fatigued), how my lungs are (fine) and how my eyes are (fine). These last two questions come of the back of my most recent PET-CT scan as the imaging showed something symmetrical on my lungs (most likely to be sarcoidosis and non-cancerous) and something behind my eyes (possibly blurring caused by a subtle movement of my head during the scan). They were about to wave me off when they asked the usual “anything else you want to ask about?” and instead of the usual “nah, I’m cool” I actually uttered a “well, there’s just this thing on my toe”.

As regular readers will know, the big toe on my right foot is essentially ground-zero for all of my cancer woes so when I noticed a new black mark under the toe nail a few weeks ago my Spidey senses started tingling. As I’ve said before, because it’s me and it’s that toe, I was immediately referred to dermatology to be seen within two weeks. Weirdly, I’m not really that phased because I’ve had my entire toenail removed three times now and, completely illogically, the mark is on the ‘wrong’ side of my toenail compared to previous cancerous marks so it can’t be cancer again. Can it? [Inner sensible if slightly morose conscious – yes Roland, it can be cancer again and all the statistics point to a recurrence but let’s hang all our hopes on a positive mental attitude].

While I wait for an appointment with Dermatology, I got back on the Immunotherapy train after a glorious eight-week break where my energy levels started to rise and the aching subsided marginally. Back on the familiar ward there was a sense of subdued freedom while people still wore masks and cleaned fastidiously but there was a little less tension in the shoulders of the nurses. There was, however, no less tension in the patients around me at different ends of their cancer journeys. One elderly gent was struggling with the mental impact of going from diagnosis to prognosis to treatment in a matter of weeks and when asked if he was doing OK he very honestly said, “not really. I get very low at night”. Another brave lady was collected by her son who impressed the nurses with his niceness but as soon as he jogged off to the pharmacy, the mother broke down completely. Not in pain or discomfort she told the concerned huddle of nurses, just exhausted with the sheer relentlessness of cancer treatment and the self-disappointment at having to have her son see her like this.

As for me, I just sit there and keep my head down. I’m young for a cancer treatment patient so I often felt guilty for being there in a weird kind of way but I also have a strong sense of self preservation. I listen to the radio on my phone, I watch endless short clips of films or TV shows (First Dates has become a weirdly addictive favourite) and I catch up on messages while I sit in the big, wipe-clean NHS La-Z-Boy. I want to be the guy chatting to everyone, making people laugh and helping them unburden themselves of their woes. I desperately want to be part of that camaraderie that I have seen time and time again around me but it’s just not me – it never has been and probably never will be. So, I do what I can for my sanity, for my wellbeing and for those near and dear to me. And I always, always eat some melon from M&S.

The appointment with Dermatology came around quicker than I had anticipated and I was able to see a doctor on Saturday lunch time in between stocking up for the Brexit shortages and popping in to see the in-laws for a slightly belated birthday gathering. I arranged this day knowingly, willingly, with mundane and normal things surrounding a moment which, six years ago, would have had me on edge for days and left a tightly wound bundle of nervous and, frankly, grumpy energy. Now I am used to these appointments, I know more of what to expect from the experience and it doesn’t take all my focus which is a blessing in a lot of ways but also a bit of a risk in the way the two miles from your home are the most dangerous when you’re driving because it’s all too familiar.

Fortunately, this time around, I was seen pretty quickly and the doctor confidently and swiftly dismissed the change of colour under my toe as nothing ‘sinister’, just a change in pigmentation under the skin which will grow out over time. This was, of course, a relief but as I walked out and applied yet another layer of sanitiser to my hands I couldn’t help but hear the word ‘sinister’ echoing through my head. It’s a frequently used word to describe something that might be cancerous and it’s such a good word to describe these lumps, bumps and marks that appear on you.

In our society, if cancer was a person, he or she or they would arrive at your party without being invited and when you woke up in the morning they would still be there, lying on your sofa and ordering crap on QVC using your credit card. They would decimate your bathroom, eat all your food and play loud music all night and no amount of begging, pleading or bargaining would get them to leave. In the worst-case scenario, you have to move out and leave them to continue their carnage but in better times you have the help of family, friends and drugs to either get rid of them or at the very least keep them locked in a cupboard under the stairs – you can always hear their breathing late at night.  

For now, then, all that’s left is keep getting the treatment, keep having the scans and keep crossing every digit I can that the treatment works and my body is in good enough shape to survive any attacks on my immune system. That hope, however, is balanced against a creeping sense of urgency about how I’m going to fit everything in between the end of a pandemic (whenever that will really happen for the immune supressed or the not naturally gung-ho) and the end of the line for me. I’ve been working under the notion for a while now that what is left of my life isn’t really for me but for the people around me, so I’ve been trying to focus on what positive influence I can have on the life of others while I’m still here to have that influence.

I’m not saying that I’m going to give all my worldly possessions to a cat home or anything (I mean, what would a bunch of cats do with a collection of semi-rare vinyl and over 100 smurfs?), but at the same time what is the point in me adding to either of those collections when I could be spending my time on other, more productive things and more positive things. If I can be a good father, a good husband, a good son, a good brother and a good friend then that’s enough for me now so that’s what I’ll be focusing on. That and inventing the ultimate fart diffusing underpants that are also sexy in a manly way – like Tena Men but for the back door instead of the front.

THE NEW NORMAL #60 – SCANS, SPACE HOPPERS AND PARTY BAGS

This week was supposed to be a big week, medically speaking, with my annual lymphedema check-up at St Luke’s Hospice, two blood tests, my monthly round of immunotherapy treatment and a quick check in with my consultant just to make sure everything is going to plan. That was the plan and, by and large, that’s what happened but what I didn’t expect was the content of the call with my consultant which happened on the Monday.  

Firstly, it wasn’t the consultant; it was my skin cancer specialist nurse which, if you remember the unofficial rules correctly, means that things can’t be that bad because only the consultant or the registrar deliver the really bad news. Secondly, there were scan results to be discussed which is notable because it feels like the first time my scan results have come back on time to be discussed at the agreed time. It’s like when you walk into the post office and there’s no queue – it feels great, but it also makes you massively suspicious. Nevertheless, despite my insides being described yet again as a ‘mixed bag’ (I always assume the bag to contain a selection items including a spanner, kazoo, turnip, toy train and an individual tea bag – like a really shit kids party bag), the news was actually pretty good.

There is no sign of the nodule that had popped up in my pancreatic base, the marks on my anterior pelvis are regressing (so either they weren’t cancer or the treatment is working) and the marks in my lungs are proving to be quite symmetrical which is a) very un-cancer-like and b) quite sarcoid-like. The only downside at the moment is something behind my eyes which they’re a bit unsure about as it was a small defined mark on the first scan and now it is a larger, blurrier mark. However, the radiologists are semi-convinced that this is down to me moving me head slightly during the scan and thus creating the blur in the imaging. So let this be a lesson for all of you; when they tell you to hold still for 40 minutes then hold still (or shake your head like a stroppy toddler if you want to mess with the radiologists but I am in no way advocating this).

Once off the phone, I had to relay this news to my wife and we hugged and we were happy. But the thing is we’ve been in this game too long now and that means you react differently. There was no popping of champagne corks, no impulsive decisions were made, and no great celebration was had (we’d already had a pasty for lunch so we didn’t want to over do it). Like a football manager in a post-match interview, we are very much ‘not getting carried away’, ‘taking each match as it comes’, and most importantly ‘sure we’ll enjoy this win and have a day off but then it’s back on the training ground to prepare for the next match’.

The training in this context is that I am now allowed to think a little proactively about my future. There will still be some treatment to make sure we don’t ‘slow down before the finish line’ (I’m all about the sporting analogies today, aren’t I?). I’ve been invited in for an actual, face-to-face meeting with my consultant so that he can assess my physical state and then I’ll be referred to a physiotherapist to help find exercises I can do build back some muscle to fill in the gaps between my skin and my bones. I feel slightly like a prisoner who has been told that he can be released in a few months as long as I don’t step out of line, but the world out there has changed so I need to be rehabilitated before they open up the big gates.

The next day I trotted off for what I knew would be my last visit to St Luke’s Hospice in Turnchapel, not because of any medical confidence but because the Lymphedema clinic is moving to Southway in Plymouth to free up more space in the Hospice for palliative care which tells its own tragic story. Surrounded by packed boxes and rolled up wall charts, I had a brief version of my usual check over and was told that my leg was in really good shape and that I shouldn’t really expect it to get any better than it is. This might sound defeatist but this basically means that although there is still some swelling and excess lymphatic fluid, only a trained eye would spot it and with careful management this won’t limit me too much (still no saunas though). I was also told that I have good ‘capillary refill’ which essentially means my toes go pink again quickly after they’ve been pressed a bit but is also going at the top of my Tinder profile if I ever become single again.

Going forwards, I will now just be called by St Luke’s a couple of times a year to find out how I am and I will only need to go to their new premises if my condition deteriorates. This is, obviously, good news but it does leave me feeling a little wobbly as my regular leg check ups have been part of the scaffolding around me during the last five years (physically and mentally) so as each buttress or metal pole is removed you have to check your balance to make sure you can still stand up without help.

Once at home, back in our safe little corner of Cornwall, hidden from the outside world, I again regaled my wife with each element of the assessment. We have good news, correction, we have two pieces of good news in as many days and given the last few years that’s very much welcome but we can’t help but feel a little flat and ever so slightly suspicious. It’s as though we expect Jeremy Beadle to jump out from the kitchen cupboards with a lecherous smile shouting “Gotcha! You are actually entirely made of cancer and you’ve got thirty seconds to live. We’ll be back after these messages from our sponsors!!!”

One of the reasons for this mistrust in the science or our good fortune is that I have become part of an online community of over-sharers on Instagram who are all telling their own stories of inspiration, hope and courage in the face of cancer. There are so many inspiring people out there and they share really insightful things that help me to look at things differently or more positively. However, for every ten messages of inspiration that I see, there’s one message from a partner or family member telling the community how their loved one has taken a turn for the worse or passed away suddenly. This fragility means you can’t take your eye off the ball for a second and you can never really, fully relax in to ‘normal’ which is tiring, to say the least.

I want to end on a positive though because this is a positive entry and I don’t want to sully that energy. Today, for the first time in a long time, I thought freely about the future. Sat on a folding chair watching my son compete in the space-hopper relay (heads up Olympic committee, it’s compelling stuff) as part of his school sports day, I scanned across all the little faces cheering their classmates on. I imagined all my son’s friends growing up to be teenagers, to go off around the world to be whatever they want to be and I could picture myself witnessing it all (as a human, not as a ghost – just to be clear). Cancer can take that away though and it will, given half a chance, so I’m maintaining a cat-like alertness at all times. Between naps.

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).