I have always made a point in life of not running for trains or last orders or, well, anything really. The theory is that if I’m not meant to be on that bus then it’s not meant to be and this has served me well in avoiding at least one tube train bombing and numerous other benefits. So, it shouldn’t have come as a surprise this week when, during a game of catch, my nearly six year old boy exclaimed “Daddy, I didn’t know you could do that” when I ran to catch a ball. It was a bit of a wake-up call at my lack of mobility in the preceding years but also chimed in with a phone call I’d had the same morning but for that to make sense I need to rewind slightly to catch you up.
Following the good news that my lungs aren’t cancerous, things started to move pretty quickly and before I could even contemplate a celebratory glass of champers I was booked in for major surgery in London. The deal I was presented with was either to opt out of the surgery and hope that immunotherapy or chemotherapy do a job on the tumour currently residing on my pancreas or I can have surgery to remove my pancreas, my bile duct, my spleen, my duodenum and the pesky tumour. Normally, they would remove my gall bladder too but regular readers will remember that I already had that whipped out five years ago so that should save time. I have, of course, opted for the surgery but not lightly because there are a few, frankly, terrifying issues which I’ll list for you here:
Death – it’s a risk with every surgery but this one has one of the highest mortality rates so once I go under there may be no coming back and that really makes you swallow hard. And pee a little.
Surgery – the surgery takes around seven hours and is a pretty gruelling experience for the body so there are a number of tests to be done on heart and lungs before I can be considered ready.
No dice – they could put me under, open me up and then decide that there’s nothing doing with a tumour that is wrapped around a number of complex and important body parts. This would still require a couple of days wait in hospital to make sure I’d been stitched back up properly but otherwise nothing more positive.
The wait – assuming all goes well, I will be spending two weeks recovering in hospital as they check on the removal of various tubes and reconnection of whatever organs I have left. Normally this would be tedious but due to the operation happening in London and this being, well, 2020, I am also allowed NO VISITORS for the entire two weeks (thanks Covid-19, you dick). This will be the single longest time I’ve been away from my family since I’ve had a family of my own and for a man who developed separation anxiety back in 2016 that is enough to make a tiny part of me want to opt out of the surgery altogether.
And that kind of brings you up to date with what’s been going on so I can get back to the running thread of this particular chapter. You see, this particular surgery (known in the medical world as total pancreatectomy which I can only ever say like Bill and Ted) is akin to running a marathon in terms of the pressure and strain it puts on your body. Now, don’t worry, I won’t be dressing up in a novelty dinosaur suit before entering the operating theatre or shitting in a drain like Paula Radcliffe (not again, anyway), but I do need to be in relatively good shape. It’s mainly the lungs and heart that have to have the capacity to cope with this additional pressure so I’m having my tests and hopefully will be good to go. Nevertheless, in typical ‘me’ style I’ll be running this particular marathon (or Snickers for the American audience members) lying naked on a bed, passed out and surrounded by strangers in masks – it’s like Vanilla Sky but less dull.
Sure, there are downsides, but if everything goes according to plan then I will get to cross the finish line of this very personal marathon at the end of August, see the end of summer and see my little boy start a second year of school which is something I didn’t think would happen at the start of 2020. In fact, if things are as good as they can be, then I could be in for a few more years of school runs and parents evenings which I genuinely can’t wait for so I’m hoping to stay match fit. There will be changes to my life such as needing to take enzymes to break down food with every meal and antibiotics every day to cover for what my spleen used to do but these are small prices to pay (unless the Americans take over the NHS of course).
This will be the last blog post before I travel up to London for the surgery and, to be perfectly frank, I’m more than a little bit scared of the whole process and what state I’ll be in when I wake. Or if I wake up. This latter point is something that people will not entertain when I mention it out loud but this is the most serious operation I’ve ever had and, hopefully, the most serious one I’ll ever have so you have to consider this as an option. I mean, if the last thing I ever say to my son is “see you in two weeks, I’ll bring you back a Happy Meal” then that isn’t exactly the lasting legacy anyone wants to leave, is it? On the flip side, how do you say, “maybe goodbye, maybe not” to a five-year-old who doesn’t understand the difference between mayonnaise and yoghurt and who’s favourite two words are ‘poop’ and ‘wiener’?
I guess what I’m trying to say in a roundabout way is that this is the bit in Run Fatboy Run where Simon Pegg hits the wall in his race and you’re not quite sure if he’ll make it through (except you are because this is a film and the step dad is, as always, a massive douche bag). The trouble is this isn’t a film. This is real life in 2020 and I think we can all agree that the one thing 2020 is good at is pulling a surprise or two out of the big. I mean, Christ, I liked more than one of Piers Morgan’s tweets the other day, so anything is possible. Anything at all. So maybe see you soon and maybe not, has anybody got a coin I can toss…..?
Throughout my ‘cancer journey’ there have been numerous references to normally fun activities which, when put together, make up something of a depressing fun fair. There’s the emotional rollercoaster, the medical merry go round, the diagnosis coconut shy and the helter skelter of mental health for starters and that doesn’t even account for the house of horrors that is the inside of my body these days (or the hall of mirrors that is the outside of my body for that matter). The last few weeks have seen a few new exciting rides added to the fair so join the queue, collect your tokens and prepare to be inappropriately touched by the carnival folk as they check that you are safely secured in to the ride.
First of all we had the Cortisol Cascades; a ride that lowers you slowly and gradually into a state of extreme lethargy and painful joints along with a dislike for food and an inability to keep food inside you. Stepping off the analogy wagon for a moment, this was a bit of a serious moment and quite a significant turning point. Essentially, the immunotherapy has really started to work through the gears and, while that means that my tumour is now taking a serious battering, so are some of my more well meaning bodily functions. One such function is that of my adrenalin glands which, unbeknownst to me, have been kindly producing cortisol for me every day of my life and we need cortisol to help us balance hormone levels and deal with stress as well as having enough energy to cope with the day. A blood test showed that my morning cortisol levels were at 10% of where they should be which, considering the levels go down during the day, sort of explained why I was struggling to muster any energy, enthusiasm or appetite. It was a bit like turning up to the starting tape of the London Marathon after a 3-day bender with Dylan Moran, Oliver Reed and Amy Winehouse and wondering why you could barely walk, let alone run.
Fortunately for me and my adrenal glands, I still live in a country with a National Health Service (for now) and once my GP and Oncologist spotted this anomaly in my blood sample, they prescribed me some new drugs which did just the trick. I genuinely felt like an inflatable Santa on 1st December who, having spent the year deflated and useless in the cupboard under the stairs, was now immediately fully inflated and smiling maniacally at passers by while Christmas songs played (odd for July but these are odd times we live in). I felt better than I had done in months with my appetite back, energy to spare and neither food nor booze made me nauseous anymore so there was much rejoicing and we purchased a paddling pool to mark the occasion.
The next ride to be added was one of those kiddy rides where you get in a small black cab and get taken at a snail’s pace through the imaginary and geographically incorrect streets of London. For the second time in 2020, my long suffering wife and I had to go to London because the medical facilities in Devon and Cornwall weren’t quite what I needed and so it was that we found ourselves flying up the A303, waving at Stone Henge and lamenting the loss of the Lucozade sign to find ourselves sitting in a park in West London. Here, we had the most socially distanced of catch ups with a couple of friends – all of us glad to see a different face or two since being under lockdown rules – before heading for bed after a small drive further North and negotiating my uncle’s disastrous plumbing in his vacant flat.
The following morning we took a whistlestop tour of my old stomping grounds (Camden, Holloway Road, Islington) on our way to Guy’s Hospital where I found myself going from driving my car to being naked apart from pants in just under 20 minutes – this was legitimate as part of preparing for procedure, I didn’t just rock up and strip naked like some errant country bumpkin unaware of social etiquette. The reason for my visit was the pesky nodules on my lungs didn’t seem to be going anywhere so they wanted to sneak a needle in via my back, take a little sample and then sneak out, all guided by the live scan of my body provided by the CT scanner and with me under local anaesthetic – this is known as a CT guided biopsy.
The plan was to get in at 8.00am, strip naked and get cannulised (so far so good), before the usual spiel from the surgeons who like to go in to a lot of details to both scare and impress you in equal measure – they must be a nightmare on first dates but the flashy car and “I’m a surgeon” line probably makes up for it. By the point I was lying face down wearing nothing but pants and a face mask (I know, a strong look for date night, right?) and being fed into the all too familiar giant Polo there were at least 8 people milling about me from nurses and radiologists to anaesthetists and surgeons – all of them wearing lead aprons to protect them from the radiation that’s about to spin around me. It’s disconcerting enough for me, a 40-year-old adult of sorts, but I can’t imagine what this experience is like for someone elderly and frail or a small child who can barely say anaesthetist let alone spell it. No amount of banter or kind words makes this feel any less brutal as they place stickers on your back to mark out the area where they want to insert the exploratory needle.
Then comes the waiting. For fifteen minutes that felt like fifty I lay, face down, the only sound I could hear was my own breathing, I didn’t move and after a while I thought they might have forgotten about me. Then there was the sound of a door opening and everyone coming back into the room which didn’t feel like it was what I should have been expecting so my heart sank a little. Then the surgeon told me something that I hadn’t even thought about hoping for; the nodules on my lung had shrunk. In the last scan they were around 1cm long but now there were less than 4mm long and that means two things; firstly, the nodules were too small to take a biopsy and, secondly, shrinking is not something that cancer just does on it’s own.
I was in a bit of a daze as I’m not accustomed to news this good but, as I was detangled and ushered out of the CT scan room, I was essentially told that there was no evidence of malignancy on my lung and, therefore, there is nothing stopping the surgery on my pancreas from going ahead as soon as the surgeons are ready and available. That’s it. No waiting for scan or biopsy results, no rare problems that seemingly apply only to me and no ifs, buts or maybes. I was discharged quicker than you can say ‘thanks for not sticking a needle through my back and into my lungs’ and then we drove happily back to Cornwall eating leftover pizza and generally just feeling a little bit lucky.
I have to be careful though, I’ve learned that. This good news was like winning on the claw machine and getting some small cuddly toy but all that does is qualify us for a go on the rifle range with the big money prizes are. The fact that the cancer hasn’t spread is fantastic, don’t get me wrong, but there is still a grumpy old tumour clinging on to my pancreas and that’s the end game here. I’m also acutely aware that for every bit of good news and good fortune that gets handed out in this cancer game there is just as much if not more bad luck being handed out to other people. I guess, in that way, we’re having a ride on the dodgems right now. For every nifty bit of steering and narrow avoidance there’s someone on the other side of the track getting absolutely battered by some dick in a wispy moustache and a beanie (the beanie has cancer written on the front). For now, I have one more round of treatment to go and then we wait for a surgery date which will, I’m sure, bring a whole new world of fun to write about.
When my wife turned forty I, like the loving husband I am, pointed out that she was half-way to eighty. She was, quite understandably, annoyed with me but then I took her to a fairground and we went to a tapas restaurant so all was forgiven….eventually. Yesterday I reached the ‘halfway to eighty’ (these words were handed back to me like the ultimate regifting) point and even my step daughter uttered the words “you made it”, such was the palpable relief in our house as we all sang happy birthday. Twice. And washed our hands. In all seriousness though, it’s a major milestone for me that, four months on from being told that I have months to live I’m still here and having a big ass slice of birthday cake – 8 more months and I’m up to a year and I think (I think) that means I will have beat the system. I could be wrong though.
For anyone curious, I got 40 Smurfs from my sister, my parents bought me the Beano annual from 1988 and my wife got me a bottle of Mad Dog 20/20 which any teen from the 90s will have distressing memories of – clearly they want me to regress but I’m not sure which age to regress to. The best present, however, came just under a week early with an unexpected call from the London team which had a slightly different take on the last set of scan results. A number of radiologists had taken a look at the latest snapshot of my insides and all agreed that my tumour had in fact not grown at all (very good news) but that they still couldn’t work out what the nodules on my lungs are. If the lung nodules had grown then they would be confident in it being cancer and if they had diminished then the safe money would be on some inflammation.
Unfortunately, my nodules are in the ‘mystery box’ category so we’ve won another trip to London so that they can take a biopsy of my mystery nodules and finally work out what the hell they are. There are two ways they can do this, the first being to give me a general anaesthetic and cut me open to whip out a sample. Believe it or not, the preferred option (which I’m booked in for) is to pass me half way through a CT scanner and then, using that image, the surgeon will use keyhole technology to remove a sample from the nodules. Oh, and did I mention that I will be entirely awake during this? Well I will be and, frankly, I’m a little bit on the nervous side of proceedings. Both procedures carry the risk of puncturing a lung which would then require it to be drained and pumped back up again but the doctors seem pretty chilled about this so I’ll take my lead from them on that front.
The other strange birthday gift I got was flu-like symptoms all wrapped up in pretty bow. It turns out that some of the side effects of Nivomulab (i.e. the immunotherapy drug) are that you develop incredibly achy joints, the kind of fatigue that makes you tired just thinking about getting up and, to cap it all, daily bouts of extreme nausea with flurries of vomiting. Now, on the down side there’s aching, fatigue and vomiting (I’ve just told you all that, keep up) but on the upside I have been told by two separate doctors that this is a very good sign. Not because they’re sadistic or just don’t like me but because this is an indicator that the immunotherapy is starting to have the desired effect of kicking my immune system in to action. This goes some way to explaining the lack of tumour growth and adds another glimmer of hope but it also means my next treatment has been put back a week to make sure I’m fit enough to receive the Nivomulab.
All of the above means I’ve been feeling pretty elderly recently but I haven’t yet slumped in to feeling sorry for myself. I have, instead, been feeling pretty sorry for my wife who has now added physical therapist, motivator and nap-waker to her long list of jobs while I just shuffle around saying ‘sorry’ a lot and focus on just staying alive as best I can. One of our frequent bed time exchanges is my wife telling me that she hates that I have to go through this and I always come back with the fact that I hate that she has to watch me. It is the only thing worse than having cancer, watching someone you love go through every twist, turn, low and moderate high with all the little grunts, sighs and gasps for air along the way. I can only ever liken it to watching my wife go through pregnancy and giving birth but at least we got something good at the end of that and it only went on for nine months.
I have managed a bit of home schooling and this morning there was a moderately energetic game of frisbee golf on the Wii but beyond that I am not good for much. It has made me panic slightly that this is now as good as it gets and I will never feel any better than I do right now but I have been assured that this is very much not the case so that gives me something to look forward to. If this does turn out to be ‘it’ though then I look forward to sitting outside the front of my house and predicting the weather due to how painful my joints are whilst gently rocking in my chair and lazily plucking a banjo.
I am glad to be 40, it’s another milestone and I’m really rather glad to be growing older because, well, what’s the alternative for everyone apart from Benjamin Button, Dorian Gray and Paul Rudd? Next up is my little boy’s 6th birthday in October and then Christmas – I do like to have things to look forward to so that I have something to keep going for and with music venues, cinemas and theatres still out of bounds there’s not much of my usual fun to get excited about. Still, within the next 9 months I might finally get to tackle that bucket list as another birthday gift I was generously given was a ride for two in a hot air balloon so I just need to convince my wife to come with me and muster enough energy to climb in to the basket.
The clichés always go that it’s the hope and the waiting that do for you in the end and, as with all clichés, they’re not wrong. I thought I’d got used to the waiting but when your diary is literally a blank page aside from a telephone appointment with a medical professional then you look forward to it like mixture of Christmas and an exam you haven’t prepared for. Like, at all. The latest call was supposed to be with my London contact but instead I was called by one of her ‘team’ and, as all long term sick people will know, this rarely means you’re going to hear anything important. These run of the mill calls are outsourced to the junior doctors to give them a chance to get a taste of some real life action. The conversation usually goes along the lines of:
Junior Doctor: “Hello, I’m one of ‘the team’ and I believe you have a telephone appointment today Mr….”
Me: “Monger. Yes, I do”
Junior Doctor: “And this is in relation to…. [shuffles notes/scrolls furiously through aging NHS computer]”
Me: “Bastard cancer”.
Junior Doctor: “Absolutely. I’m afraid we haven’t received the results of your……”
Junior Doctor: “Exactly. So I’m going to chase those down and we’ll get back to you in about two weeks, is that OK?”
Me: “Of course [there is genuinely no point in saying no, it won’t get you the results any quicker]”
The sneaky thing this time, however, is that I’ve been given a heads up on the results by the Plymouth team who have given me what they described as a ‘mixed bag but mostly favourable’ – like a bag of pic’n’mix with a small turd hidden in it. The favourable element is that the nodules on my lungs appear to be more sarcoids rather than anything more cancery and all my organs are generally doing what they should be (although there was a slightly worrying comment about my ‘deflated gall bladder’ which, considering mine was removed 5 years ago, makes me question the attention to detail of the radiographer). The virtual turd is that despite continuing with the immunotherapy the tumour on my pancreas has continued to grow (by about a centimetre in a month) and is now starting to push on to my stomach. As my delightful wife described it, ‘nature’s gastric band’.
The frustrating irony is that she’s not wrong, my appetite is way down (no bad thing) and my tolerance for the smell of certain foods (including eggs and boiling potatoes) is now particularly low. This means that my instances of nausea are up and although it’s a grim subject I think it’s worth mentioning in case anyone is reading this at the start of a similar journey. Everyone experiences nausea differently (which is a bummer as it’s a side effect of pretty much every type of cancer treatment) but for me it arrives incredibly quickly and unannounced with just the sensation of my mouth filling with saliva for any kind of warning. Most of the time this is far as it goes and I just need to get to a toilet to let the saliva flood out or risk looking like some dribbling Basset Hound and Human cross breed. Sometimes I get the added treat of full on vomiting as well but, thankfully, this is a relatively rare occurrence but either way the sensation of nausea goes as fast as comes. What remains, however, is the worry of my wife and the kids who have to see my leave a room looking like I’m about to blow chunks and return 5 minutes later feeling genuinely fine but with a look of breathless desperation on my face. Sometimes it feels easier to be the patient than the carer.
The other new symptom is that, at some point, my legs have been swapped out with those of an arthritic 68 year old and every joint below my belly button aches like never before. This is a side effect of the immunotherapy but, when mixed with the fatigue, it makes me good for not much more than lying in the sofa, watching TV and occasionally offering some witty interjection to whatever conversation is going on around me. I know a few readers will recognise this version of me from Sunday afternoons at University but I am usually more active these days and given the limitations on my time it is incredibly frustrating to just rest but rest I must. Loafing around might seem lazy to my hyper critical inner voice but I know that my body needs all it’s energy to fight the internal fight against the aforementioned bastard cancer (if you can read those last two words in the voice of Sean Bean I’d be much obliged).
During this time of inactivity I have been observing our cats (Cleo, Coco and Tango if you’re in to cat names) and am torn between just adopting their way of life completely (not, in any way, like George Galloway) or seeing them as some sort of furry warning of where my life is going if I don’t pull myself together. I’ve also managed a bit of cooking although seeing the chef run off to throw up after finishing the cooking only to return 5 minutes later to eat the meal must have been a disconcerting sight. The other depressingly embarrassing moment was when I squatted down (a slut drop for those familiar with such parlance) to get a dishwasher tablet out of the cupboard under the sink and could not get up. Once my darling wife stopped laughing, she helped me up but the complete lack of power in my knees and thighs was quite alarming so now I just glide around the house lying flat on a skateboard until bed time. It’s the only way.
All of these new sensations bring a certain amount of fear into your day-to-day life, the main worry being that this is now ‘how I am’ and I won’t ever get better than I feel right now. I’ve always had a weird obsession with savouring the last of things and now I’m obsessed with the idea that I’m beyond the point where I could physically kick a ball around with my son, ride a bike or return to my former career as a stripper (Fruity McBooty was my stage name). Similarly, once dining out returns as an option to society will I be able to enjoy one of my favourite pass times or will I have to book tables as near to the toilets as possible to avoid embarrassing dribbling situations. Is this the beginning of the end, just another stage in the journey or the symptoms of my body fighting back? I’d say these are the questions that keep me awake but I think I could sleep through a jump-jet launching off my bed side table at the moment so that’s something positive to hang on to!
Still, I’ve got a lockdown 40th to look forward to in a week, another set of treatment a few days later and, at some point, somebody with a good grasp of medical terminology will ring up and tell me what’s happening inside my body. For now, I shall continue to loaf, enjoy the sun shining through the window on my aching legs and stick my head out of the window when anyone cooks eggs. It’s a small price to pay, eh?
I’ve been pretty angry recently. Angry at a lot of things from big things to small things. I’ve been angry at the inequality in the world, the injustice of the ‘one rule for us and one for them’ approach of British government and the catastrophic approach to the global pandemic that has cost tens of thousands of lives. Then I’ve been angry at the ‘unfairness’ of having cancer when I have so much love to offer my family and friends compared to the hate filled excuses for human beings that will still roam this earth long, long after I’m dead. I’ve been angry that the kids can’t shut cupboard doors or put shoes away and I’ve been angry that some knobhead has been driving his chicken-chaser up and down the road at high speed, scaring the shit out of my cats. Anger has a way of filling the void and, as I’m not working and we’ve got home schooling down to such a fine art that it only takes about 3 hours a day, there is plenty of void to fill.
I’m angry that a slice of normality now seems to involve phone calls from passing acquaintances with medical qualifications who like to tell me that there is something else wrong with me this week (nodules on my lungs that weren’t there before, problems with my thyroid, iffy blood tests). This makes me twitch every time the phone rings between the hours of nine and five, Monday to Friday but I also have to race to pick up as my five year old has taken to answering the phone and his grasp of medical terminology is so weak that the passing on of messages becomes like cracking a wartime code.
However, please don’t jump to any hasty conclusions. I haven’t been stomping around the house, shouting at people are putting any four-letter tirades on Facebook. No, I seem to be getting quite adept seeing the anger coming and nimbly dodging it like one of those rigged coconuts dodging balls as the fun fair. And by dodging I mean vigorously shaking my head for about 3 seconds to get rid of the thought and then going to do something productive like unload the dishwasher or flick snails away from my strawberry plants. Bastard snails – I’m pretty angry at them too. Once the dishwasher is empty and all the snails are whizzing their shells halfway across the garden then I have to move on to reminding myself that I still have a huge amount to be happy about and that’s an important exercise.
My reasons to be cheerful at the moment range from ‘I may be facing up to my own mortality but at least I’ve had more warning than “put your hands on the car and spread ‘em”, giving me some time to sort stuff out’ to ‘Every chance I get to share a learning experience with my little boy is a memory he will have of us together no matter what happens in the future’. I’m also quite buoyed by any instances of sunshine and a weekly shopping delivery with minimal replacement items not to mention winning 6 Sunday roasts delivered to my door by virtue of writing a sub-par caption for a picture of two dogs sitting in pub chairs (that was a very good day). Oh, and I should probably give a shout out to my wife who has the tireless positive energy of a Disney princess even when I am trudging around like Eeyore after he found Tigger using his tail to floss with. Again.
Anyhoo, mood swings and managing my mental health aside, things have been edging forwards at what feels like glacial speed. The upshot of the London scans was that there is something on my lung but they don’t know what it is and that means yet another CT Scan on 15th June (I think if I have another 3 then I get a free CT Scanner. Or a T-shirt that says ‘I got cancer and all I got was this T-shirt after they repeatedly fed me back and forth via a massive Polo’). If it’s cancerous then there’s no point in doing the pancreas operation – what’s the point in putting out the fire on the ground floor if the rest of the skyscraper is ablaze, eh? However, if it’s not a tumour then it could be all stations go, it’s yet another waiting game. Other than that, the main problem has been my thyroid which doesn’t seem to know quite what to do and that is leaving me all over the place, energy wise, and giving me a nasty case of hypothyroidism and a touch of anaemia. Which is nice. Nothing that a tweak to my medication and a few more tweaks to my diet can’t fix but still it feels like someone out there must be running out of space for more pins on their voodoo doll of me. Imagine if someone has made a voodoo doll of me though – a pudgy little bald thing with eagle eyes and removable internal organs. Mad.
Yesterday I had treatment number 7 which was a little different to the usual affair. Firstly, I was handed a facemask on entry which meant I had to try extra hard to convey emotions and reactions with my eyes leading to some nurses going home to have fitful nightmares of a middle aged man glaring and winking at them. Secondly, my pesky thyroid had acted up during my blood test which meant that the nurses were nervous of starting the treatment without a doctor’s consent – it’s fair enough, if a patient reports being light headed on repeated occasions and has stupidly high TSH (Thyroid-simulating Hormone) levels you might want to double check before pumping a few grands worth of chemicals in to their body. Then again, after two hours of waiting, the doctor was still otherwise engaged so they decided to go ahead anyway – partially for my benefit and partially because by the time I was done it was nearly 6.00pm and the few nurses remaining had run out of things to clean around my solitary presence in the make shift ward. Oh, and they’d run out of white chocolate cookies by the time the tea run got to me so, yeah, another reason to be angry….
No, no no (3 second headshake). Reason to be cheerful? Well, my little boy sobbed his little heart out when I left for treatment and that is horrible but what a thing to be so loved by another person that they can’t handle you leaving for even a few hours? Also, Spotify has enabled my rediscovery of a load of 90s bands that I’d neglected (currently having a Mansun, Bluetones and Longpigs memory lane trip). Finally, I’m less than 24 hours away from that free roast (I’ve gone for the pork in case you were wondering).
The bottom line, as always, is that there is always someone else with more reasons to be angry and maybe they need a reason to be cheerful. I’d put good money that everyone reading this has either directly or indirectly been affected by either the Covid-19 pandemic or institutional racism and inequality – both hugely justifiable reasons to be angry. I have also, during this cancer journey, met many people having to make major adjustments to their life because of this horrible disease and they have every reason to be angry too. So if you’re in the lucky position to not be one of those directly affected then maybe reach out to someone who might be and give them a reason to be cheerful – anything from an unexpected and positive message or a small cake to a bag of flour or a stylish new face mask. It really does help when someone else pokes a hole in your black cloud and a shaft of golden sunlight beams through because, let’s face it, these are dark days for all of us so a little extra Vitamin D could be just what we need.
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.
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.
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.
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.
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.
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.
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.
Right, monotony levels are reaching ridiculous heights now. I’ve done the ceremonial handing over of my Smurf collection to the little one – he was amused for about 48 hours and then declared that he was “over Smurfs”. I held back 39 years’ worth of tears and lovingly placed them all back in the box. Poor Smurfs. I have been through every single physical photograph I own and categorised them (‘Growing up’, ‘University’, ‘Various bands’, ‘Grandparents’ etc.), parted company with all manner of tat that I’ve been hanging on to for years and read through all my teenage lyric books to see if there were any nuggets of inspiration (spoiler alert: nothing much apart from the fact that I was a very angry teenager and was particularly productive at times when a budding romantic relationship ended. I know, shocker). Daily/Weekly excitements have boiled down to the postman coming, recycling being taken away, the phone ringing unexpectedly and recreating much missed ITV Saturday morning show the Chart Show by putting together YouTube playlists.
I can’t get my head in to the world of video calling no matter how much I miss my friends, family or colleagues. It feels like pressing your grubby little urchin face up against the window of a restaurant where you can see the warm glow of good times and even better cheer but you can’t touch, taste, smell or feel any of it so I’d rather scavenge in the bins for now and wait for the doorman to let me in when it’s good and safe to do so. I’ve tuned in to a few live streams of musicians but, with the best will in the world, watching somebody play their heart out in their spare bedroom with daylight streaming in while you’re sat on the sofa with a bowl of tomato soup just isn’t the same as jostling for space with a bunch of pissed up folk in a dark and sweaty basement, is it? We even had a go at a couple of quizzes with friends/family but Cornish Wi-Fi and various levels of technical ability make these generally quite painful experiences.
However, in amongst all of that, we keep getting messages of admiration and encouragement like “I don’t know how you’re doing it”, “How are you coping?” and, my favourite, “Just make some memories with the family”. I particularly like this last one because although it is meant with nothing but love and care, the reality is far less inspirational or heart-warming. Memories we’ve made so far include;
Making a scarecrow (inexplicably named ‘Popeye’) who we awoke to find covered in snails the following morning. I mean, if you can’t even scare the snails away then you’ve essentially failed at your job on day one at Scarecrow Academy, haven’t you?
Baking ourselves to death with more cake than Bruce Bogtrotter could manage in a particularly glutenous month.
Laughing until we cried after my five year-old tricked me in to putting a pillow case over my head repeatedly in a version of peek-a-boo that resulted, on turn 5, in him punching me square in my ‘gentleman’s area’ at 8.00am. I think we’ve raised a gangster. Or a Bond villain.
Having evening meals around the table in almost complete silence because we’ve been together as a family for nearly six weeks and nobody has anything new to say anymore.
Trying out different accents on Alexa to see what she/it can understand. So far so good but I’m building up to a strong Welsh accent early next week….
Having my belly and or back fat wobbled by an excitable five-year-old accompanied by “look mummy, watch it wobble”. It. Charming.
You see, it doesn’t matter how poignant the moment feels or how heavy your heart may be as an adult, kids just want to carry on as normal and if that means throwing stones at a fence, laughing maniacally at a squashed snail (seriously, Bond, your days are numbered) or just playing endless games of Lego Batman on the Xbox then that’s what it has to be. You can’t force special moments out of life, they just need to happen and that’s a hard truth to accept when you’re living on borrowed time.
Nevertheless, thoughts have frequently turned to the time after lockdown when we can emerge blinking into the world and start to create scenarios where special moments are more likely to naturally blossom. This has brought me to the conclusion that I need to make a proper bucket list but one with a two tier system that covers off what I’d like to do in the free world and how I would go about recreating that during lockdown if the cancer doesn’t let me get to the freedom stage. Obviously, like almost every thought, feeling, twist and turn I thought I’d share it with you lot because, well, who else am I going to share it with?
Hot air balloon ride – this was a passing thought when I first decided to write a bucket list but the more I think about it the more I want to do it. I’ve never been able to sleep on planes because of the excitement of seeing the world from up high through a tiny window so the idea of a 360 degree view with the wind in my hair (OK, bald patch) is massively tantalising.
Lockdown version: I’m going to take the washing basket up to the top of the garden and sit in it with a candle and a balloon.
2. First football match – For a while I’ve been saying I wanted to take Jake to his first football match as some kind of rite of passage and I wanted it to be at Home Park (aka the Theatre of Greens), home of the mighty Plymouth Argyle. The trouble is, I am a bit jinxed as every time I’ve seen them play they’ve either lost or drawn so I’ve been waiting for a game that holds no meaning just so I don’t curse the team. Maybe there will be a pre-season match I can get to and introduce the boy to the world of half-time pasties, creative swearing and generally being among a few thousand football experts.
Lockdown version: basically making him watch me play FIFA on the Xbox for hours on end as Argyle rise to the top of the Premier League. And eating pasties at regular intervals. It’s basically the same, right?
3. Go back to work – this might sound incredibly dull but I’d defy anyone with a mind and a job they even semi enjoy not to want to get back to this part of life. I dream of the day when I can sit in an office space and ask questions like “is anyone else’s internet being really slow today?” and “did you watch [insert TV show of the moment] last night?”. Even better, I’d love to feel that rewarding glow of helping a colleague to solve a problem or make them feel better about a bad situation.
Lockdown version: I’m going to have to teach the kids how to use Excel and give them arduous tasks before then revealing the magic of sorting data and creating pivot tables just to see the mixture of joy and relief on their faces. We can discuss last night’s episode of Peter Rabbit and whisper about who has the dirtiest mug in the kitchen.
4. Sit in a pub garden with my friends – This one has been specifically inspired by lockdown and the lack of social interaction, but this is definitely one of the things I miss the most. Warm sun on my back, cold cider in my hand, hastily ripped open bags of crisps and kids running over from the climbing frame asking “can I get a coke and some chips?”. Throw in some good mates, nowhere to be for the rest of the day and maybe someone setting up for a little gig in the evening. Ruddy bliss.
Lockdown version: sitting on the front step with a can of alcohol-free cider (still can’t stomach alcohol) and trying to strike up conversation with passers by while Jake asks if he can have another bloody biscuit.
5. Big family meal – you know those families that take up an entire corner of the pub and order a three-course meal along with coffee and maybe something a little stronger? That’s my family at it’s best and I love it. This bucket list wouldn’t be complete without getting us all together, last supper style, for a big pubby lunch where we all sit down one side of a long table so that somebody can paint us while we eat (fun fact; my mum has made a voluntary photographic career out of snapping people mid-gobble to the extent that she could easily put together an exhibition to be opened by Ed Milliband with mini bacon sarnies served as canapes).
Lockdown version: Face timing my family while I eat a bowl of instant noodles and taking a photo of the screen.
6. Visit London – I spent ten years living in the big smoke and I don’t really miss the city that much but I do miss certain aspects and I really miss some incredible people I befriended there. I’d want a clear weekend with Jake and the rest of the family to take in all the touristy bits in the day and then catch up with friends in the evening. I want a kebab from City Kebabs in Stoke Newington, I want to have a wonder through Portobello Market and/or Brick Lane and I want to see the wonder in Jake’s eyes as we take in the Science Museum/Natural History Museum/Hamleys.
Lockdown version: Aside from online tours and showing him old photos from when I’ve done these things before, there isn’t much that can replace the real experience. Still, I can do it all with a cockney accent so it will be pretty authentic.
7. Sit outside a French bistro – I’m not sure there are many greater pleasures in life than sitting outside a little bistro in Paris with interesting people to watch, fresh bread in a basket in front of you and cheap wine being served by the carafe. These are the times when the world, my world, stands still like you’re in the eye of a storm and you can just let go. Bliss.
Lockdown version: Again, this is going to have to involve sitting on my front step drinking alcohol and trying really hard to imagine that the Cornish accents of passers by is a rare strand of French. My lockdown bucket list is starting to look an awful lot like I’ve been made unemployed in the late 70s which isn’t a good look on me.
8. Travel somewhere new and foreign – I love a bit of travel, discovering new places and trying new things. Wifey and I had great plans to do so much exploring with and without the kids but now I’d settle for one more chance to put my seat in the upright position, pretend to pay attention to the safety information and take off for somewhere I’ve never been so that we can explore and make memories. Greece maybe. I’ve never been to Greece.
Lockdown version: it’s a toss up between watching lots of travel videos on YouTube or just selecting different dishes to cook each night based on varying cuisines but neither option quite has the zest of a real holiday.
9. Swim in the sea – As a child, I used to live for swimming in the sea in the summer and the days at the beach that surrounded this experience. Nowadays, I live closer to the sea than ever before but rarely get myself under the waves. So, one more time I’d like to taste the salty zing of sea water on my lips and that feeling of freshness that a gentle sea swim brings.
Lockdown version: This one is actually achievable, but I just need the weather to warm up a bit and for someone to keep watch on the shore so that I don’t accidently break social distancing conventions with a jellyfish.
10. Go to a gig – Regular readers will know of my love for music and there is no greater rush in this world (for me) than feeling a tight rhythm section reverberate through your rib cage while the melodies get to work on your ears. If I was being incredibly picky then I’d opt for a band I already love supported by a band that I’ve never heard before who put on a great show. I would also enforce a height restriction so that no tall folk would block my view and if anybody starts having a chat that goes beyond “these guys are great” or “check out the bassist” then they will immediately be ejected from the venue after being forced to buy a round for everyone who is left.
Lockdown version: I guess it’s going to be live streaming some random bedroom gig by popping on one of my live DVDs of Reef, Muse, Incubus or Reuben. The no chatting rule still stands though.
11. Get published – It has always been a pipe dream to see my name on the spine of a book so if I can turn this sorry saga in to the type of book that helps other people through a difficult time then I can die happy. An added bonus will be leaving this for my little boy to show him that, despite all my old photos, I didn’t spend my entire life in pubs or staring in awe at a bunch of dudes with guitars.
Lockdown version: Well, there isn’t enough ink in my printer to make my own version but if push comes to shove I could try to self-publish or write the whole thing out on the walls of my house like a slightly less mental Jack Nicholson in the Shining.
For now, the most immediate item on my bucket list is to have a successful operation on my blasted big toe which is now booked in for Tuesday 5th May. That’s right, for the third time in my life, I’m going to have anaesthetic injected in to my right big toe so that they can rip (sorry, surgically remove) my entire toenail, scrape out the melanoma from beneath it and then bandage me up like a cartoon character with a splinter. I’ll be up on bricks for a few days and hugely twitchy about people going near my feet but then I should have halved the number of known cancers in my body and that’s got to be good for my immune system, right? Immunotherapy then resumes on 15th May with treatment #6 and then I’ll be riding that hot air balloon all the way to Paris to watch Reef play before Plymouth Argyle take on Paris St Germain in the final of the Roland Monger European Cup which will be played out in the field behind a pub with all my mates and family watching. Man, these NHS drugs are gooooood.
Hey, how was your day? Same as yesterday? Same as tomorrow? Not sure if it’s a weekday, weekend or Christmas day? Yeah, this coronavirus lockdown thing is getting pretty samey, isn’t it? It occurred to me and my family the other day just how similar to the classic Bill Murray film Groundhog Day the current world is but with the key difference that we’re all playing Phil Connors with an acute and unnerving awareness of the repetitive nature of life. I mean, if I wake up tomorrow and Alexa is playing ‘I Got You Babe’ then I’m not getting out of bed for all the PPE in China.
It was at this point, however, that my wife picked up that thought and spun it around as she so often does; “I’ll take this day over and over again right now”, she said. You see, for us and so many others (maybe even you) just getting through each day in good health, with full bellies, under a solid roof and with our loved ones around us counts as a massive win. Yeah, the process of waking up, getting all the kids fed and dressed and set up to do something resembling schoolwork (this week alone we’ve made a massive stick man, done a huge amount of spelling, constructed a scarecrow called Popeye and embraced the nationalism of St George in a way that I had never before entertained) can get a bit monotonous but is that really so different to normal life? I mean, I have to admit that I’m loving the fact that I don’t have make a single packed lunch, there are no afterschool clubs to ferry children to and from, and although I am missing the peace of my commute I haven’t spent any time staring at the back of a tractor for over 5 weeks so that’s a big fat win.
Anyway, coronavirus aside, there have been further developments in the cancer house, so I thought I’d pen you an update because, well, what else are you going to do? Seriously, you can’t really prefer to watch another version of the Baked Potato song, can you? Today, I spoke with an incredibly lovely and knowledgeable cancer specialist in London who is working as part of the team at Guy’s and St Thomas’ and there was a key phrase uttered in amongst this conversation; “There’s no point pretending this isn’t an extremely serious situation but it is not one without hope”. Hope. That’s a word that has come to mean so much more recently, so any offer of hope is as welcome as a bag of flour or a box of doughnuts. The hope in this instance comes in a number of forms which I’ll try to outline below:
Immunotherapy – I’m continuing with the treatment as previously documented but what I hadn’t realised is the dose of Nivolumab has now been trebled. The key message from today though was that I shouldn’t be too disheartened that the treatment to date hasn’t worked. Treatment should and will continue to make sure that the tumour doesn’t haven’t a chance to spread unchallenged. In addition, it seems that although the cancer has grown, it hasn’t grown as rapidly as you might expect an aggressive melanoma to grow and at the centre of the growth there is something crucial: necrosis. This essentially means that the heart or the centre of the tumour is dying which could be really good news as you might expect but there is potentially a downside too. Necrosis can mean that the cancer has decided to move on, much like early settlers who realised that the although the pancreas lake was good for an initial base camp but they’ve decided to up sticks and move on to the port of lungs/kidneys/liver or somewhere else with more fruitful farming land to exploit.
Surgery – not completely off the table if immunotherapy can help to diminish the tumour but there is some serious untangling to be done first, particularly if the tumour has wrapped itself round the portal vein. If the portal vein is involved then it gets tricky as this is the key vein that moves nutrients and toxins in and out of the gallbladder, pancreas, spleen and liver – you really don’t want to damage that sucker.
Embolisation – this is essentially the option of cutting off the blood stream to the tumour which would stop it getting the energy and nutrients that it needs to grow and spread. Again, because of where the tumour is, this is a risky option but would buy me some time in the search for another option.
Radiotherapy – we’re keeping this one in our back pocket for now. It won’t present any kind of cure but like the first wave of uncredited actors in a World War II film, it might just knock a few holes in the defences to allow the immunotherapy and my immune system (aka the second wave of actors in khaki) a better chance at actually inflicting some real damage.
All of the above, however, is just stalling tactics; medical kettling, if you will. There are clinical trials out there which might help me beyond just treading water but I can’t get on to any of these during the coronavirus so everything else is about delaying, holding, distracting. I’ve thought about trying the “hey, cancer, look over there, what’s that?” rouse but as cancer doesn’t have eyes (or ears for that matter), I don’t hold out much hope. Also, no medical professionals have suggested this so it’s probably a non-starter.
The other big theme of my conversation today was my big toe. New readers may be utterly confused by this but I’m not going to repeat the whole sorry saga apart from saying that considerations for a title of the book version of this blog haven’t got far beyond ‘My Big Toe is Killing Me’. A few weeks ago, just before that phonecall, I noticed that I had once again developed a dark mark under the toenail of my right big toe. I did the responsible thing and sent photos to my team at the hospital and they, in turn, sent it on to London which feels a little weird – I mean, I’ve hardly left the house for five weeks but my toe has been all the way to London. Just hopping along with a tiny, toe-sized nap-sack. The two photos I sent in have drawn the unanimous conclusion that this is probably a recurrence of the same melanoma that started this whole sorry affair back in the day.
So, here we are again. Groundhog day, week, month, year. I have something black and cancerous under my toenail that needs removing, I have some medical treatment that may or may not deal with the cancer living inside me and I have a little boy who is insanely excited about a Friday afternoon dance party which is on his timetable for tomorrow afternoon. I am less thrilled given that his favourite two songs at the moment feature a bald man singing about a baked potato and singing stick insect from Hey Duggee. Then again, would I take that over not being there to dance with him or being stuck in a hospital ward and only having that experience over Facetime? Oh you bet your ass I would, every single day. Altogether now, “Stick, stick, stick, stick, sticky, sticky, stick, stick”.