THE NEW NORMAL #43 – FOUR DAYS IN MAY

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

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

Day 1

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

Day 2

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

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

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

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

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

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

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

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

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

Day 3

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

Day 4

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

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

THE NEW NORMAL #42 – FOURTH TIME’S A CHARM

It’s amazing how blasé I have become about various aspects of this whole cancer malarkey. A few years ago, just the mention of the word Oncology would have put the willies up me (not literally) but now I find myself casually wandering in to a makeshift Oncology department on a sunny Friday afternoon during a global pandemic and my main concern is that I will look as good as the other patients. Apart from once, I’ve only ever seen women getting treatment around me and they always look very well turned out, almost as though a nice pair of shoes and a sharp haircut will befuddle cancer in to just wandering past and missing them altogether. I’m an entirely more dishevelled sartorial prospect (something I’ve developed over the years to make my face look like less of an accident) so I always get the same feeling as when I’m in a meeting with the big wigs at work or waiting for my wife outside the changing rooms in any shop above Primark in the food chain.

Another signifier of my growing comfort with being around cancer is the ease with which I let people stab me with needles and make jokes about it. Today, the immunotherapy nurse asked which hand was better to put the cannula in (they always do) and we have our usual banter about my veins being a bit obstinate which this time I embellished with a joke about no nurse being able to successfully access the vein on the first attempt. The nurses always take this as a challenge and there was a bit more banter based on bravado as my hand was soaked, tourniqued and vigorously tapped to get the vein up;

Attempt 1 (left hand) – cannula part way into the vein but then the vein collapsed so we pull it out and look for another vein.

Attempt 2 (also left hand) – cannula part way into the vein and this vein also collapsed but only after a bit more bluster and wiggling the needle around before giving up.

Attempt 3 (right hand) – a change of nurse (this is standard practice after two failed attempts – presumably to stop my veins locking them out like an irritable cash machine) like a wrestler tapping their partner in but to no avail as the third vein still doesn’t allow ‘progression’ as it’s known in the biz.

Attempt 4 – (also right hand) – jackpot baby! The cannula is in and I am ready to receive the drugs.

By this point, there are at least 4 nurses and one other patient fully invested in the success (or not) of getting one of my veins to accept a cannula needle which means they all check in on me at some point during the afternoon and, to each one of them, I make the joke; “Fourth times a charm”. They all laugh politely but I am ashamed of myself for allowing dad jokes to follow me into Oncology. Nobody needed that.

During treatment this time I have prepared to watch some topical satire with Charlie Brooker’s Antiviral Wipe loaded on my phone to distract me from the rhythmless bleeps and whirs of hospital machinery. Naturally, I find myself giggling away like a child which draws scornful looks from one other patient and a few turns of the head from one of the more severe looking nurses (to be fair, they all look pretty severe with face masks on). I try to remember that there’s nothing funny about cancer treatment and that I should sit solemnly playing Candy Crush but that’s never really been my thing.

Taking a break from the comedy, I scan the room and notice the rainbows, hearts and smiley faces presumably drawn by children (or artistically challenged adults, like me) to cheer up the windowless Oncology ward. One of them had the word ‘Heroes’ written above a rainbow that somehow included silver glitter (not scientifically accurate) and this, weirdly, coincided with two nurses cleaning the treatment station next to mine and discussing the media coverage of the NHS. “Ugh, I hate it when they call us heroes. I don’t mind the clapping but the heroes thing is too much pressure. Now they’re on about teachers too”. This got a sigh of recognition from her colleague who was vigorously wiping down a chair for the umpteenth time that day.

I then took a mind meander which had me thinking that teachers, NHS staff, delivery drivers and shop workers (among others) have all been classed as ‘heroes’ during this pandemic, they have still been criminally underpaid and put at risk. Meanwhile, I’ve seen numerous social media posts defending Boris Johnson as ‘just a man’ who’s back we should get off because he’s trying his best, whether he’s working from Downing Street, Chequers or any of his other properties. The problem with this is that society is letting those in charge off the hook whilst simultaneously setting entire professions up on impossibly high pedestals with nowhere to go but down.

“Whoa, Roland, what’s all this political chat? We only came here for the fluffy cancer banter”, I hear you say. Well, the thing is, my mind meander took this point about British media and then mashed it like an overripe avocado into the world of having cancer which, in this analogy, is played by a sturdy slice of wholemeal toast. The reality is that as soon as you get the cancer tag, people tag you with additional badges that say things like ‘brave’, ‘hero’ and ‘fighter’ which is a hard to live up to. I only mention this because I’ve come across a couple of other cancer stories recently (via the news and other sources) that make me feel pretty humble even in my situation. Nevertheless, these people still wouldn’t want to be referred to as heroes because they are just doing what they have to in order to survive as long as possible?

Is that what it just boils down to now? Do you qualify for hero status if you’ve run out of options and you’re just doing whatever it takes to stay alive, keep your head above water or earn enough to feed your kids? It feels like the real heroes should be the ones making the right decisions for others even if it they have easier, more self-serving possibilities available to them. Now, please, please don’t get me wrong. I’m the son of two teachers and I would never do that or any other public service profession down but the majority of these people do these jobs as a vocation, because they care, because it’s what they have to do and not for glory or accolades or fame or fortune. Or weekly applause. Anyway, I’ve possibly gone off topic a bit here but the point is simply that raising people up too high in any situation can be dangerous, particularly when that situation has put them at a personally low ebb and then they feel the expectation to be a brave hero. Like having a raging hangover and then being asked to pull off those dance moves you did last night before popping in to the kitchen to prepare everyone a fry up. Nobody needs that.

Anyway, back the cancer stuff; one enlightening thing about my latest treatment was that my thyroid function seems to be recovering a little according to the blood tests, so that’s a positive. The Oncology nurses were also tentatively discussing a proposed move back to the main hospital site by the end of June but that will rely on all of us not rushing out to lick the nearest Costa Coffee drive through window before hugging the nearest dog walker you can find. For now, we are preparing a military style trip to London that involves researching which are the least popular service stations for wee breaks, how to kill time in a hospital between appointments without breathing in any Covid-19 and how on earth to keep my diabetic blood sugar levels stable enough to have the required Positron Emission Tomography (PET) CT scan. If this was a zone on the Crystal Maze I’m pretty sure I’d be locked in but then again I’d probably be the one with the most experience of the challenge so I’d have to give it a go. I’m a hero like that.

THE NEW NORMAL #41 – DARKEST BEFORE THE DAWN?

I wasn’t going to write this blog entry because I didn’t feel like I had anything to say but it’s been a weird few days and I’ve found myself in a bit of a funk so I’ve decided to return to the original reason I started this blog which – to help me process my thoughts, feelings and fears. So, consider yourself fair warned and nobody will judge you for closing this one now and moving along.

There have been a few ‘happenings’ in my medical world starting with an investigation of my pesky big toe that appeared to have melanoma reoccurring under the toenail as has happened before. We were operating under the impression that once a quick assessment was completed, the consultant would then lift my toenail off (with a local anaesthetic, nothing brutal), scrape out the melanoma and send me on my way with a bloody toe and one less instance of cancer. What actually happened was the consultant (fully masked up) and another consultant (also fully masked up) looked at my toe through their special magnifying glass torch thingymajig (official name) and decided that this was, in fact, not melanoma. I know, yet more twists.

It seems the dark colour isn’t a change in pigmentation but rather the kind of blood staining or bruising you’d get from dropping something on your foot or, given that I’m taking blood thinners every day, “walking down a steep hill in tight shoes”. Now, I’ve quoted that last bit because of the ease with which that example tripped off the consultants tongue as though there are a flood of people presenting at Dermatology every day with blood soaked toes complaining that “I just wanted to run down the hill in these winkle-pickers and now look at the state of me, I can hardly walk”. Still, any proclamation of not-cancer is a good proclamation in my book so I skipped out of the hospital (via a liberal dousing in hand sanitiser, of course) and back to my doting wife and child who were waiting in the family van for me. So, no operation yet but they’re still going to do it on 22nd May, take a biopsy and check it out because, as the consultant said, “it’s you and it’s that toe”.

The other medical-moment of note was receiving a letter from the good doctor at Guy’s and St Thomas’ outlining our conversation and basically saying that she agrees with the treatment I’ve received so far and a few recommendations for moving forwards. These letters are pretty standard and usually get a skim read and go straight in to the folder of all my medical correspondence (fun fact: this is a Tigger folder that I half-inched from my wife which she, in turn, stole from the 90s). The significant thing about this letter was another blasé statement towards the end which essentially said that if all the options prove fruitless then she would agree with the suggestion for “palliative radiotherapy”. I kind of knew this was a likely eventual outcome but seeing it written down and with that awful word ‘palliative’ included really threw me for a loop. I’ve been to St Luke’s Hospice for my lymphodema treatment enough times to know that palliative care basically means a slightly less manic version of being in hospital with better catering and better views. The thought of being somewhere like that for palliative care and having, at best, to say goodbye to my family once a day really freaks me out so I try to avoid that particular avenue of thought.

Talking of family, I’ve been spending a lot of time with the wife and kids recently because, well, coronavirus. I’ve hit both extremes of a range that starts at ‘this is great, family time is just what I need right now’ and runs all the way to ‘oh my God, I miss that hour to myself I used to get during my morning commute’. I feel guilty about wanting time on my own but I’m naturally a fairly solitary creature so sometimes I have to find legitimate reasons to head off into the garden or go for suspiciously long toilet trips. My little boy has managed to break my heart with his little utterances (“Daddy, when I’m older and I move out, I think I’m still going to keep coming around for morning cuddles. In fact, I might just move next door and then we never have to be apart”) as well as generally leaving me speechless (“Daddy, if you were the Flash and you had a pick axe, you could get work done so quickly”) and also making me laugh until I cried with conversations with our next door neighbour through the hedge that separates our properties; “Naomi! Naomi! Look down at your bush, there’s something sticking out of it” (I should point out at this stage that he was waving a long stick through the hedge (or bush) to get her attention).

The hardest thing to handle, however, is dealing with all the cancer stuff and particularly all the ‘months to live’ stuff during the continued Coronavirus uncertainty. It’s been 7 weeks since I was told I should not stray out of my house, only sitting by an open window if I was feeling particularly adventurous – sure I’ve broken that rule a little but not without consequences. A couple of walks on the beach with my family of shielding chaperones have been fine but I have developed a new symptom of prickly skin brought on by anxiety when anyone comes a little too close. A solo trip to the village shop recently was aborted when somebody else dared to join the queue behind me and I genuinely freaked out.

My fear of getting sick now means that when I ate a little too much Chinese takeaway a week ago my brain immediately decided that rather then being ‘over full’ I was actually about to explode, Mr Creosote style and that would be the way my story would end – with noodles dripping off the walls and prawn crackers liberally spattered across the Welsh dresser. It’s a battle of wills every day to convince myself that any twinges, aches, pains or unexpected tiredness are not the first signs of the beginning of the end and I won’t be sucking porridge through a straw by the end of the week. The difficulty is, as an out of shape and overweight man approaching 40 like everyone over 18 once the pubs reopen, there are a lot of aches, pains and twinges and the unexpected tiredness just mounts up. As a perfect example, I spent a good 30 seconds this morning worrying that I’d developed a cluster of new brown moles on my ankle before I remembered that my little lad had been eating Coco Pops for breakfast and was a little sloppy with the chocolate milk when clearing up his bowl. Bloody kids.

On top of that, it has been an awful long time since I’ve seen or spent time with anyone outside my house and I really, really miss a lot of folk. I miss my mates, I miss my family, I miss my colleagues, I even miss those people who you only see or know in passing – the guy who scans my tag on the ferry every morning, the woman who cuts my hair, even the people who live in the flats opposite my office and who I watch in idle moments as they spend most of their time lounging about on a balcony next to a canoe. I am one of millions who feel like this right now and it sucks for all of us with no end in sight and no deadline to work towards (that part is really killing me – pun intended) but there is some hope for all of us. The devil on my shoulder, however, keeps telling me that if we don’t get a shift on and end this lockdown then I might not get the chance to see all those people again – let alone hug them, I am a hugger (not with the hairdresser or the balcony folk – the ferry man gets a Christmas hug).

It makes me beyond sad, it makes me depressed, it makes me angry like you wouldn’t believe and it makes me spiral off down the kind of warped imagined futures where the next time my little boy will see his grandparents is at my cremation or that I will have to leave my home for hospice care before I can leave it to go to the pub with my friends. Don’t get me wrong, I’m not wallowing. These thoughts leave my head as fast as they enter it but they come fast and often like flies buzzing around my head which, in this analogy, is played by a bowl of overripe fruit on a particularly hot day. Nevertheless, if I don’t swat a few thought flies every now and again by writing down their descriptions then they just keep coming back and fruit starts to rot.

Still, my wife has repainted the dining room and I’ve planted some things in some questionable soil in the garden so that’s progress and I’ve entered a competition for writing a children’s story so that’s something new on the immediate horizon. Even more than that, I’m lucky that my family and friends around me are the kind of good, sensible people who aren’t champing at the bit to go out and play three-legged volleyball in the middle of Primark during the sales so I feel well shielded and when it’s safe we will party like t’were 2019 – although I’m volunteering to be the designated driver as I’m still very much off the booze.  

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

The above was supposed to be the end of this particular entry but then I had an email on a Sunday evening and two phone calls on a Monday morning that turned my frown at least 90 degrees which is worth noting. Firstly, I was notified that the Cornwall Live website had marked me down in their annual cool list as the 27th coolest person in Cornwall due to my writing about music and this blog that you’re reading now. This is the weirdest and only accolade my writing has ever had but I’ll take it because it shows my son that you can get acclaim without being muscular, over sexualised or fame hungry so he’s happy that his dad is officially ‘cool’ even if he doesn’t completely understand why or agree.

The first phone call came from one of the diabetic nurses doing their first regular check-up of the year and the good news on this front is that I appear to managing this condition well so can just carry on as I am. The conversation is of note, however, because it revealed something that I had previously not been told about my last scan which was that the large lymph node nearest my tumour had shrunk following the first four courses of treatment. This, along with the fact that a lot of my side-effects are often associated with immunotherapy treatment actually working, means that there is just the faintest glimmer of hope that the immunotherapy might not be a complete waste of time. Glimmer #1.

Glimmer #2 came via the next phone call which was not a scheduled one but certainly a welcome one. The doctor in London who has been investigating options on my behalf was able to discuss my case with a colleague at King’s College hospital who just happens to be a dab hand at pancreatic surgery. This surgeon has come to the conclusion that it may well be possible to operate and remove the entire tumour, thus making me a whole lot better off than I currently am. The drawback is that the pancreas would have to come with it which would leave me diabetic forever (waaaay ahead of you) but also needing to ingest a capsule with every meal to mimic the enzyme normally produced by the pancreas to break down food. The other downside is that this is pretty major surgery which carries it’s own risks but, if the choice is a bit of slicing and dicing plus a pill three times a day or just waiting to get more sick and then die, then I know which prize I’m going to opt for.

For now, then, I have to make a foray into London town to meet the surgeon, have a scan and make sure I fully understand all the potential risks. Then, all being well with treatment and the toe chop op, I will head back to London for major surgery and a few nights in a hospital miles away from home during a global pandemic. Still, I’m officially cooler than Tori Amos and all but 26 other Cornish residents so London and this pandemic won’t know what’s hit it by the time I saunter out of there minus one pancreas with a whole load of staples in my belly. Chicks dig scars, after all.