THE NEW NORMAL #38 – FAITH, HOPE AND CHARITY

Right, change of plans everyone. One thing you get resignedly used to on the great cancer road trip is having to make detours, follow diversions and do a whole lot of waiting at temporary traffic lights. You know how I mentioned that we were going to head back and check out radiotherapy-town again? Well, actually, we’re going take the scenic route through a lovely little village called immunotherapy that I visited earlier this year because we might be upgrading to a nicer hotel in London. Right, this analogy had got out of hand, I’m going back in to straight talking mode. Sorry about that.

Essentially, I have taken the option of a second opinion from a doctor at Guy’s & St Thomas’ in London which might have the result in getting involved with a clinical trial. The trial is researching a new type of cellular treatment taking healthy cells from areas of my body that show high immunity and putting them in the affected area to do their worst (or best). I don’t know a huge amount about this treatment and there’s no guarantee that I’ll be suitable or that it will even work but I’m imagining it to be a little like when your goalkeeper gets sent off and you’ve run out of substitutions so you have to put your outfield player with the best goalkeeping skills in nets. Anyway, this means that I have to put radiotherapy to one side for now as starting that treatment would preclude me from being part of the trials and I have to have faith that someone in this medical chain knows what might be best for me. It might seem odd considering the number of blind alleys and wrong turns my medical journey has taken me on but if I don’t have faith in the medical professionals then who am I supposed to have faith in? Idris Elba? Madonna? John Craven?

All this brought me to the unexpected scenario of being allowed to break out of quarantine after 5 weeks to get a portion of immunotherapy and I was ready for anything – and by ready I mean racked with anxiety whilst wearing a face mask, a visor and two pairs of gloves with a packed lunch that my mum hastily put together for me because I’d left mine at home in the fridge (remember, I’m an actual adult). Now, Immunotherapy doesn’t hold any great fear for me as I’ve been through the process before but this time I had to go to the Nuffield facility across the road from the main hospital as all Oncology ‘action’ had moved up there. Driving there from my sleepy Cornish village felt like driving into a minefield of potential coronavirus infection so I did what any sane person would do – I turned the music up and locked all the doors on my car. Ain’t no Covid-19 punk gonna car jack me on the way to the hospital.  

The Nuffield felt more like I was going for an appointment with a solicitor than anything medical – there were carpets for crying out loud – but no sooner had I arrived that I was whisked up the stairs by the first of many masked nurses I was to meet today.  My temperature was taken by zapping my forehead (a new experience), my bloods were checked, and I was placed into a familiar chair in unfamiliar surroundings. The clever oncology folk had converted a space normally used as an operating theatre in to a chemo/immunotherapy treatment ward so, with excellent social distancing in place, four of us sat facing each other in a windowless room that felt as clean as if it had just been opened that day. Nevertheless, unwrapping my cheese and pickle sandwich to eat in an operating theatre that would normally be used for endoscopies and other such invasive procedures felt like I was ticking something off a particularly bizarre and very niche bucket list. On Eurotrash.

I always go into these sessions on a real high for some reason, I think the idea of getting drugs that give my body a boost feels like I’m legitimately taking steroids before the big game which is pretty exciting. This mood is usually boosted by my fellow cancer folk and the nurses who all help to make this as enjoyable an experience as possible but today was different for two distinct reasons. Firstly, although the nurses remained chipper and full of quality banter, the fact that every one of them was wearing a visor, a face mask and a bandana was particularly dehumanising. I can only imagine what having an army of these brave souls buzzing around you in ICU must be like but even the limited interactions I had felt a little like letting a group of very polite bank robbers stick needles in your arm while you make small talk. Also, an unexpected side-effect of the face masks is that everyone talks with a particularly nasal tone due to the pinching strips on the nose which, once you get over the idea that everyone has a cold, is actually pretty comical. Secondly, all the other patients were nervous. There was no chit-chat today, no gallows humour and certainly no banter which made for a much quieter and less convivial environment. You could see the grim, steely determination on the faces of all those having treatment and it’s a look I’ve only seen once before – on the faces of parents about to accompany their pre-teen children in to Primark with a “in, out, no messing about” vibe.

One thing that is still present, however, is the concept of hope. Despite the lock down, coronavirus, isolation and the general bleakness in the world at the moment, people wouldn’t come to Oncology if there wasn’t the slightest morsel of hope left rattling around at the bottom of their soul. The saying has always been “it’s the hope that kills you” but I am increasingly finding myself of the opinion that it’s the hope that keeps you alive – that and the cocktail of drugs I’m taking. And if the drugs start to fail then I know I can rely on an army of friends, family and acquaintances to share stories of their uncles, aunts, neighbours and the like who have defied the odds to live lives full of fun, meaning and, most importantly, a number of years rather than months.

Finally, I just wanted to take a moment to focus on the goodness of people. Throughout the past 5 weeks, I have, of course, had excellent support from the NHS who have recognised the difficult situation that I’m in and gone above and beyond to make sure I get everything I need. Beyond that, however, there have been so many excellent people starting with the numerous postal workers and delivery drivers involved in brining essential and non-essential items to our door. We have had numerous doughnuts, flowers, cards, 3 packs of top trumps, corned beef, tinned ham, booze, Easter eggs, the best Brownies in all the South West (thanks to the good folk at the Early Bird), a fully made up picnic and, well, inflatable reindeer horn hoopla. These gifts have come to us from family and friends which, at any other time, would make me feel uncomfortably like a charity case but I have learned to recognise the signs of people who genuinely want to help so now I just wave and say ‘thank you’ from a safe distance.

One question that gets asked alongside the handing over of well wishes and gifts is “how are you coping? How are you being so brave?” to which I smile and mumble something about just getting on with things. What I really want to say, however, so I’m saying it here is “I am not brave”. What people see from the outside is someone trapped in their house with an indefinitely short life span and no idea when they’re going to be able to see loved ones again. What I see from the inside is that I’ve got my family with me, I can speak with anyone I want or need to, and I have trained medical professionals working in my favour. Now, compare that with someone who has to work in an ICU every day while their children stay at home or someone who has to say their last goodbye to a loved one over the phone because they are too infectious. How about someone opening their small business to serve their local community with food or someone going out into the homes of the vulnerable to provide essential care? Or how about those coming out of retirement to serve the NHS or those travelling thousands of miles to work in a country where they aren’t fluent in the language just because they have the required skills to save lives. Those people are brave. Those people are coping. Those people are the stars of the show. The rest of us are just part of the chorus line so memorise your lines, learn your steps and stay the hell at home.

THE NEW NORMAL #37 – SCARED OF THE DARK

At some point in your life you will have been in a cupboard or a room or a wardrobe with no source of light and no concept of distance. Absolute pitch-black darkness that is as deep as it is claustrophobic and as vast as it is enveloping. For the past two weeks I have been in this proverbial wardrobe with my wife and it’s been a pretty horrible experience but today our eyes finally started to adjust and we could see the cracks of light seeping in through the cracks in the woodwork. Up until now it’s been all coat hangers in the eyes and questions like “what material is this?” and “When did you by a velour playsuit….Roland?”. But today the phone rang and there was something which, to our massively dilated pupils, looked a little like good news but don’t say it too loudly, you might scare it off.

Back in the real world (we haven’t really been in a wardrobe in case you were worried), what actually happened was that my oncologist called and offered the possibility of a way forward. There are still no clinical trials on offer at Derriford, the Royal Marsden or Christie’s due to ongoing Coronavirus efforts so the next option would appear to be returning to the world of Radiotherapy with the intention of shrinking the tumour that has set up home on my pancreas like some kind of squatter with a ghetto blaster and a UB40 greatest hits compilation (the worst kind of squatter). At present, the tumour has grown to a size of roughly 13x7x7cm which is roughly the same size as double cassette including the case and as much as I love my music I could really do without that growing in to a double CD or a bloody gatefold 12” concept album.

So, back I head to the laser table to have my pancreas zapped on a daily basis, probably some new tiny tattoos and a whole lot of feeling a little bit less than ideal. The added challenge to this level of the cancer game is that is that each time I go in to the hospital for treatment I’m going to have to run the Corona-gauntlet of trying to not pick up any infection while my immune system is jeopardised by the ongoing and aforementioned lasering. I’m considering getting some sort of Radiotherapy Onesie to wear for treatment which I can change in and out of in the hospital car park to avoid infection coming home with me – and to look a little bit sexy when I saunter in the Radiotherapy suite.

This news has given me some focus, a purpose which has been missing these last few weeks and that is a huge relief because, well, you wouldn’t like me without a purpose (you might not like me anyway, I’ve never ruled out the possibility of people tuning in to this blog just to find out when I shuffle off my mortal coil). Distraction tactics over the past fortnight have included gardening (lots), eating (too much), not drinking (just don’t fancy it), making dioramas with my large collection of Smurfs and desperately trying to order food online. I have played numerous games with my son, dispensed hundreds of bubbles from the front garden for no good reason, sighed at regular intervals and cried – boy have I cried. But then there have been moments of laughter and the laughter starts to outweigh the crying like goodies beating baddies in some last hurrah of a battle.

The adult part of me has been writing a will (essentially I’ve left everything to Anneka Rice but only if she can find it during the one hour immediately following my death using nothing but a helicopter and a series of obscure clues otherwise it all reverts to my wife and children), putting together a memory box for my little boy (initially this was just photos of me in various states of inebriation but I’ve managed to find some more meaningful items now), sorting out my finances so as not to leave a mess behind me and just generally trying to stay fit and well so that all of this will become laughably premature. I’m not particularly great at the whole ‘being an adult’ thing but it has been mildly reassuring to have something relatively positive to focus on with the idea of providing for my family in my absence being some kind of comfort. I’ve also made plans for some sort of a plaque and a flower patch in the local memorial gardens which means I’ll be close to the sea and in earshot of the pub so if you’re playing there and I’m not by the bar then turn the volume up a bit, will you?

One interesting aspect of all of this, of course, is that all of this is being played out in the new world order of Coronavirus which makes things both easier and more difficult. On the plus side, I’ve had nothing but time to spend with my wife and kids, a delivery of potatoes or mystery doughnuts feels like winning the lottery (not the full jackpot but at least 4 numbers) and the love via social media has been truly comforting in a way that is very hard to either fathom or explain. I’ve had recommendations for medicinal cannabis variations, advice from people who’ve been through similar with family members and contacts with medical experts that I wouldn’t have had access to were it not for the personal friendships I’ve built up over the years. All this from the comfort and beauty of my coastal home with seagulls squawking overhead and an overtly positive playlist looping on Spotify. If I’m going to go out, then I’m going out in a pretty idyllic place surrounded by people I love so it could be a whole lot worse.

So, here we are. Radiotherapy this way comes (Covid-19 or no Covid-19), there’s then the option of something a little more experimental but I’ll hold on to those details for now if you don’t mind and finally the challenge of preparing myself and the rest of the family the worst case scenario (e.g. Anneka Rice solving all the clues in an hour and turfing them out of the family home whilst rifling mercilessly through my extensive music collection). For now, I just wake up every day and run through a checklist of potential ailments (has my pancreas exploded? Do I have a dry cough? Have any of my legs fallen off? Any? That should be either probably) which, assuming everything is OK then leads to the standard blood test, two insulin shots, six tablets and remembering to get dressed even though nobody outside my house will see me for a good while yet. All the time wondering which one of the C words will burst through the wardrobe doors first – cancer, coronavirus or cure.

Or Columbo. I only mention the diminutive detective because I have to mention “one last thing”. A few months ago, a friend and I came up with the idea of doing a podcast called ‘It’s Your Funeral’ and, a few weeks ago, we finally got around to recording it in his garage. The idea is to discuss what you want from your funeral and death experience with a bit of humour, some music and the breaking down of a few taboos around the one thing the binds us all together. It seemed a little too ‘on the money’ two weeks ago but having had a listen I think it actually helps so have a listen and see what you think. All being well we might do some more episodes but, unfortunately, we only have one microphone and it’s in Simon’s garage so, for now, we’ll wait.

It’s Your Funeral: https://soundcloud.com/sizzlebotiot/its-your-funeral-pilot/s-QtGPzvLu5Sp?fbclid=IwAR0lkw6TUfqNi5N-P-HNZHwDUSrvRxxf3rdovaBy6KGRLpUGyHZpdev1MVs

THE NEW NORMAL #36 – THE TWIST

Well, here we are then. You locked down? We’re locked down. Mad isn’t it? Not as mad as the people who think ‘social distancing’ means air kissing or only having two pints before the pubs shut down but, still, it’s a wild time to be alive, right? I mean, our grand children and great grand children will read about this period in modern history the way we read about the plague or the second world war. Nevertheless, as long as folk have enough frozen pizzas and toilet roll, we should be alright, shouldn’t we?

Now, the original title for this entry was ‘The Other C Word’ as I was going to focus on the issues of having cancer during the coronavirus outbreak but events have somewhat overtaken me on that front. You see, I had my latest scan two weeks ago and I got the results on Tuesday over the phone which, well, they weren’t good. This is the bit in the movie of my life where you think everything is going OK but then a twist comes along to throw you for a loop and the hero (that’s me) crumples to the floor in disbelief.

It seems the four sessions of immunotherapy did little or nothing to the cancer on my pancreas which has now grown instead of diminishing as had been the not unrealistic hope. This basically means that the immunotherapy currently on offer via the NHS or any other mainstream medical route is of no use to me. The options, therefore, would normally be either chemo or clinical trials but, with the current lock down in place neither of those is massively practical nor likely in the short term. The prognosis, then, is months. ‘Months’. Funny how that can seem like an absolute age or the blink of an eye depending on the context. “I’ve been practicing the yo-yo for months” compares much more favourably to “I only have months to live”.

The weird thing is that whoever has to deliver this news over the phone almost always has to ask, “do you have any questions?” at the end of the call which is such an absurdly crazy thing to ask in that situation. I want to ask “How many months? Why? What did I do wrong? Why do I deserve this? How do I tell my wife and my stepchildren? How do I look my 5 year old boy who I adore with every fibre of my being in the eye and tell him that although I look fine, there is a strong chance that I will have to go in to hospital one day soon and I will never, ever come home?”. But you don’t, do you? You just say, “Not at the moment”. I even thanked her for the call. Christ I’m English.

Since getting the news on Tuesday (nearly four years to the day since I got my original diagnosis, timing fans) we have been through a range of emotions, almost entirely negative. I say ‘almost entirely’ because through all of the bitterness, the biting anger, the depths of despair and the overwhelming tide of sadness there has been love. I don’t mind admitting that I have sobbed uncontrollably at the idea of leaving my little boy without a daddy (that word alone breaks me), I have hugged my wife so hard and close through the fear of leaving her behind to pick up all the pieces and I have slumped to the floor in a hopeless heap after expending the energy taken to tell my family over the phone that I might not make it to Christmas. But, through all of that, I have felt love washing over me like a healing tide. Every message, thought, kind word and act of generosity has been truly appreciated and felt. 

Right now, I have made an appointment to finalise my will over the phone and I have started to think about how I want to leave things for my family but that doesn’t mean I’ve given up. There are outside hopes of getting on to a Clinical Trial at London’s Royal Marsden hospital or Christie’s in Manchester – Derriford hospital in Plymouth have stopped all trials at the current time due to the coronavirus – and failing that I will go down the chemotherapy route which works better for those that have already had immunotherapy but it’s a nasty treatment that isn’t great for quality of life. Beyond that we’re into miracle territory and I feel like I’ve probably had my fair share of those already in life so who knows.

There’s not much else to say other than that I am, as a friend said, ‘the luckiest unlucky fucker’ in the world as I have the perfect excuse to stay at home with my family in the sunshine. Making memories and getting things in order is the name of the game right now but I will do my best to document things as I go, for the sake of history and my son’s understanding of things when he’s older. I’ve been trying to think of how to describe where I stand at the moment and it comes down to two feelings; firstly, I find myself looking in to the future and seeing myself fade out of events like the family photograph in Back to the Future – school sports days, standing on the side lines of football matches, first pints, graduations, weddings, grandchildren. I can see them happening as clear as I day, but my presence is just a misty eye and a remembrance rather than anything more tangible. Secondly, I have this sense that the as yet unwritten roadmap of my life is being folded up before I’ve had the chance to complete the journey or at least see where the finish line was supposed to be and that feels deeply unfair. Partly because I had so much journey left to go and partly because I’ve always loved maps.

The bottom line, however, is this; I have lost count of the number of times my son has said “Daddy, look at this” or “Daddy, can you help me?” in the last few days but every time it feels like someone is killing a part of me, knowing that one day in the not too distant future he will forget that I’m not there any more and call out like this only to be met with silence. Deafening, tragic silence that will become his new normal and I hate myself for being the person who will make that his reality which, in turn, drowns me in guilt and so the loop goes on. Each day gets a little less disorientating and confusing but, then again, the current normality of living two weeks into a coronavirus lockdown is not much comfort. So, it’s a race against time – will coronavirus block me from accessing any new treatments or will I hang on long enough to get some help to prolong what now appears to be inevitable. There’s the twist in the movie for you but the end is not yet written so hold on, it’s going to be a bumpy ride to the end credits.

THE NEW NORMAL #35 – BUSY DOING NOTHING

Welcome back sports fans, the bases are loaded and we’re entering the fourth quarter with everything to play for. I feel like that’s something that might realistically be said by an American sports reporter but I’m not sure which sport. Maybe swimming. Anyway, the point is, today was the fourth and final round of treatment which is worth commentating on in either an American accent or any other. Much as with the other treatments, it was a case of wrapping up, turning up and sitting up straight in the waiting room. This was followed by the slight variation of being put in a private room for a change – I think they’ve twigged that I’m listening to all the conversations around me so they’re protecting the other patients now. Oh, and a reclining chair that had been placed too close to the wall causing me to travel half way across the room when I pressed the recline button.

The big difference with number four is the context. In the last three weeks, another c word has been dominating the world as coronavirus or Covid-19 has become the most talked about thing on the planet. Now, I don’t want you thinking I’ve turned in to a panic buying survivalist with bunker tendencies and normally I’d be keeping tabs on things but generally keeping my distance. The difference in 2020 is that, thanks to the other c word (no, not that one) I am now one of the higher risk people in the world (statistically speaking) and so I approached the hospital with a little more trepidation than normal. In fact, I donned a full Lycra one-piece, free-climbed up the outside of the hospital and then abseiled down the inside of one of the incinerator chimneys just to avoid the cluster of coughing people gathered between the entrance and Warrens bakery. This is, of course, utter nonsense (anyone who has seen the footage of me attempting to use a rope swing in Mexico will know I lack the upper body strength for starters) but I did take the most English of precautions – I subtly raised my scarf up over my mouth and nose. Take that, pandemic. 

Three different hand sanitisers and a flight of stairs later, I was set up in my special room being visited by my key worker with the results of my latest blood test. It seems my recently overactive thyroid has burnt itself out and is now, well, underactive – as my friend Adam would say, this is very on-brand for Roland Monger. An underactive thyroid basically means a further dip in energy (great), putting on weight (double-great) and an increasingly messed-up metabolism (you get the pattern). There is a pill for this, of course, but that takes my daily prescription up to 6 pills, four injections and four tiny but VERY sharp finger stabbings to test my blood as well as a hug from my wife (don’t tell her that’s not on the doctor’s prescription, she doesn’t suspect a thing). Anyway, for now I get to have 6 weeks without treatment to give my body a chance to recalibrate but during that time I’ll have a CT scan just to see what’s occurring and how my cancer has reacted to my immune system which now resembles the Rock, I presume.

Aside from all the physical shenanigans, I wanted to address something else with this blog entry something that has been playing on my mind a little. I get a lot of great comments from people on reading my meanderings, lots of support and plenty of superlatives like ‘brave’, ‘positive’ and ‘inspirational’ which is all lovely but it is only part of the story. You see, there are days, most days in fact, when I feel sorry for myself, a bit angry at my situation, desperately sad for my little boy or just plain depressed. Some of this is down to the thyroid issue, some of it is because of the treatment and some of it is just mental health stuff caused by having cancer but all of it weighs heavily on my mind throughout everything I do.

For example, in and around all the appointments and consultations I still have to go to Lidl sometimes to pick up toilet roll, today I went to B&M to get one of those giant bags of tea (like, 1000 bags not one massive tea bag, I’m not mad) and two weeks ago I spent a thrilling half hour in Clarks buying school shoes (again, for school children, not for me – still not mad). For large parts of those mundane activities, my life is no different to how it was pre-diagnosis but there are moments – unexpected instances – where everything stops for a few seconds and I get this wave of, well, that’s the thing; I don’t know what to call it. In my head, it’s pre-grief of my own death which gets triggered by literally any story, film or song where the father has left or died, any time I see any milestone father’n’son artefacts (bike, football, shaving equipment, pint – it’s a minefield out there people) or any point that sends my mind off on a tangent to ‘what if I wasn’t here for this’ world (like Disney World but just without Mickey Mouse for some inexplicable reason). “But Roland”, I hear you cry, “what do you do to quiet these voices in your head?”. Well, I keep busy. Hella busy.

I’m not doing your standard anti-cancer stuff though, oh no. No marathons or taking up triathlons for me, that’s far too passé. No, instead I’m trying to be an attentive husband, play an active roll in raising four kids and do up a crumbling house. I’m getting as close as I can to working a full-time job, my other blog  (Listen With Monger, check it out) just sauntered past the half a million clicks mark and just this week I recorded the first episode of my first podcast with a good friend – it’s about funerals but in no way as bleak as that sounds. Throw in keeping up with friends, family and a semi-professional career in playing Xbox football and, well, there is no rest for the cancerous. This, however, is not a healthy thing so it bothers me when people say I’m inspiring them or a positive influence – I take the compliment, sure, but really I’m just coping in the only way I know how. Stay busy, don’t stop to think too much about what might or might not happen and keep distracting yourself with new shiny things like that TV series you never got to watch or the thrill of selling old junk on eBay. Oooh, a penny….

So, my advice for this entry would be to look within for your own inspiration and your own coping mechanisms. What works for one will be wholly inappropriate for another and what keeps me distracted from my own self would be the very idea of hell to a marathon runner. I have had to learn, however, that my body is not overly happy with what my brain wants to do to keep distracted so I’ve been ‘resting’ which is just THE WORST. The plan now, therefore, is to spend three weeks getting back to zero, take all the meds and then I’ve got three weeks to be actually properly active before bloody ‘rest’ comes back on the agenda again. Still, I know what I’ll be watching when I rest as I have taken the advice of my podcast buddy and started watching the excellent ‘Inside No. 9’ which is just fabulous albeit slightly unsettling when you watch three episodes and then leave your ward to realise you’ve been in private room number 9 the whole time. I’ll be back when I’ve had a scan but for now I’m off to have a cry in B&Q because of a bucket or something.

THE NEW NORMAL #34 – TRANSITION VAMP

I have, I think, always been fascinated with transitions. I really hate goodbyes, I over anticipate hellos, I work in change management, I love those days when the seasons start to turn and I could sit in any large transport hub for hours just watching the emotions that flow through those places. I’m an addict for the energy of a verse becoming a chorus, a twist in a film plot or the day after learning something new that changes your outlook on life. I am, however, getting pretty tired of transitioning between being sick and being well enough to pass as normal (as much as I ever do).

Since my 2nd treatment, three weeks have passed and the first week was a fair attempt at normality before I crashed and burned on the Wednesday. Sat in a workshop that I was supposed to be running, I had the very real sensation that everyone else was part of a TV show that I was watching but could not interact with in any way. Feeling slightly out of sorts, I looked down at my hands to see them shaking uncontrollably and suddenly all those well wishers telling me “listen to your body” were brought to the fore. Throw in some disorientating heart palpitations and the same energy levels I used to have on a Sunday while at university (i.e. lethargy mixed with indifference served in a glass made of questionable fashion choices), and you’ve got a recipe for a fairly useless human being.

Week two was far better but there was a weird new side-effect – itchy inner ears. I know you’re not supposed to put anything smaller than an elbow in your ear but if that was the case then why did evolution/God/pure chance (delete depending on whatever you believe) make it possible for your ears to itch mercilessly in a place only reachable by a screwdriver or BBQ skewer? Despite my infuriating ears, I was able to return to work and pass for normal during the day while passing out on the sofa in the evening. So far so even in the battle with immunotherapy. One all, if you will.

The third and final week saw me transition from not just appearing normal but to actually being relatively normal, I even managed a first beer of the year after accidentally doing dry January in response to my liver politely requesting I take it easy while the immunotherapy drugs do their worst. Or best, actually.

I was trying to describe the way immunotherapy works to a friend recently and the best I could come up with was this; In an ideal world, you would send in a James Bond style drug that would casually stroll up to the cancer in a dinner jacket, knock out some smart quip and then strangle it with a razor wire without causing any fuss, damage or suffering. At the other end of the scale is what has been the only option for many people in recent years, chemotherapy. In comparison to Bond, chemo is a Colonel Kurtz lead platoon of helicopters dropping wave after wave of agent orange on your body in the hope that one of the bombs hits the target despite the wanton destruction all around.

In between Kurtz and Bond is Rambo. Rambo, in this world, is immunotherapy; an approach that whilst fairly well targeted is likely to cause some collateral damage and take out a couple of friendlies with stray bullets along the way. This certainly feels like a fair compromise considering the alternative, but it certainly makes for a twitchy experience that you want to end and also want to continue indefinitely. Schrödinger’s cancer, you see, is the challenge we now face where a scan after my fourth set of treatment could be good news (the cancer has reacted well and retracted), average news (the cancer has completely ignored the treatment but hasn’t grown) or bad news (the treatment has been a completely waste of time and the cancer is now wrapped around all your vital organs). So, yeah, as much as I want the treatment to be over, I’m also really not looking forward to the next time I have to pass through the giant Polo.

Anyhoo, morbid possibilities aside, treatment #3 came along and, despite the doomy portents of Storm Dennis (the least threatening of all storm names), things went pretty smoothly. Sure, there was a two hour wait because one of the specialist nurses was off sick, but the waiting room was in good spirits – you don’t mind waiting so much when you’ve got the life to wait in. The saddest part (there’s always one) is that a lady so frail and weak from chemotherapy had to lie down on three chairs in the waiting room under her coat and that of her companion. Having set off at 7.00am from home for an 8.30am appointment, this poor woman was finally able to start her treatment at 11.00am but she didn’t grumble once – even making a joke about taking her shoes off for the obligatory weigh in (it’s a bit like Slimming World but with less whooping and guilt).

I know I’ve mentioned it before, but it really does stand up to repetition; people going through cancer treatment just don’t moan. I’ve been in various places around the hospital with people who’ve self-inflicted injuries and they grumble and shout like spoilt children screaming for their confiscated toys. The hardy souls surrounding me this time were some familiar faces (the lad from treatment 2 with his dad watching faithfully as his son slept the sleep of the exhausted) and new faces including a gent who was in for his first time with immunotherapy. Disappointingly, the chat was more reserved this time and the room felt a sense of real stoic sadness which didn’t chime particularly well with the radio pumping out Bruno Mars’ ‘Uptown Funk’ but that’s what you get for locking in on bloody Heart bloody FM. I mean, seriously, it’s like booking a clown for a funeral and then being disappointed when it just makes everything really awkward and everyone leaves early to leave the clown a bad review on Trip Advisor.

Anyway, treatment went well as I transitioned from newb to semi-pro in the sport of having expensive drugs plugged in to my veins. It took three attempts to get the cannula in to my veins but I’m becoming accustomed to the feeling of the needle scraping against bone in the search for an entry point (sorry if that made you wince, it tends to make people wince). I know when they switch from saline to the drugs, I remembered to take food and I have sussed the optimal sartorial choices to make for treatment (fyi, it’s all about layers). By the time the fourth treatment comes around on 6th March I’m hoping to get my blackbelt in immunotherapy and equally hoping that immunotherapy has done it’s training with the NHS version of Mr Miyagi (or whoever the hell trained Rambo).

To end things on a positive note, I wanted to touch on some of the things you can still do whilst getting treatment because it’s important to focus on the art of the possible (and be grateful for Wi-Fi). Things I have managed to do whilst waiting for a blood test or getting treatment this week include; booking tickets for a concert in London, buying seeds to grow a salad garden with my little boy, catching up with messaging friends around the world, a bit of the day job and filtering through a whole load of new music that I need to review for my other blog. Oh, and I started picking out the music for my funeral but that’s another story for another time – along time from now.

THE NEW NORMAL #33 – THIS TOO SHALL PASS

This post is a little bit backwards so if you haven’t watched Memento then buckle up for the ride. Driving home today, at the end of my second dose of immunotherapy treatment, I managed to tune in to my favourite Friday afternoon film review programme (Mark Kermode and Simon Mayo on BBC Radio 5 if you’re keeping tabs) and they were interviewing Tom Hanks ahead of the release of his new film, ‘A Beautiful Day in the Neighbourhood’. Aside from Hanks’ unerring ability to pick a good film and his soothing, deep vocal tones, I’ve always found the man who brought Woody to life (oo-er missus) to be the kind of calm and reassuring personality that you always wished to have in your life.

Towards the end of the interview, Mayo and Hanks discussed words of wisdom that would help us all through these troubled times and the presenter offered up his co host’s words, “Everything will be alright in the end and if it’s not alright then it’s not the end”. I loved this – it applies to films and, hopefully, life too. Hanks, like the absolute pro he is, parried this wisdom back with four simple and beautifully delivered words; “This too shall pass”. Hanks elaborated, “if you’re having a low day, a crappy day – this too shall pass. If you’re on top of the world, having the best day of your life – this too shall pass. Life evens out like a big ol’ bell curve so just take it as it comes”. If ever I need to hear something on the radio on the way home from a long session in the chemo ward, it was Tom Hanks telling that this too shall pass.

Now, before people start sending in postcards of concern about my wellbeing, I must confess that some of this was my fault. My appointment was at 9.30am and I had fully intended to take some food with me but in the flurry of school runs, making it to the hospital on time and dropping in a prescription at the pharmacy, I completely forgot. This meant that I spent six hours without food or drink because a) I forgot to bring anything and b) I am apparently incapable of asking for help. Sitting for six hours isn’t exactly strenuous but the impact on your body and mind of having all those drugs pumped through your hand and into your system is pretty serious so by the time I got out I was shaking pretty vigorously. So much so that when I got to the pharmacy to pick up my prescription and tried to take a sip from my hastily purchased bottle of M&S water (sorry environment) I ended up liberally sprinkling the guy in front of me in the queue like the winner of a low budget go-kart grand prix.

Prior to this impromptu soaking of a stranger, I had spent my time in the chemo ward playing a game. The game is called ‘Try Not to Listen to all the Conversations about Cancer’ and has a bonus round of ‘Don’t Look at All the People Who are so Visibly Sick’ – I’m getting quite good at it. I read the front and back of my blood test order form, I watched Wednesday’s Match of the Day on my phone and discovered a new sketch show on Netflix (The Astronomer’s Club, not bad). Nevertheless, as I worked my way through the levels of this game it got harder and it was almost impossible not to notice the teenager opposite me sat with his dad in a scene of depressing familiarity. Then there was the old couple where the husband was attending his last chemo session but complete with iPad, Ear Pods and a sense of resolve that was humbling. Finally, there was the family next to me with a father who was attending his second session of chemo with his wife and teenage son in attendance – I tried not to see that as a vision of my future but that thought wormed it’s way in as the words ‘GAME OVER’ flashed up in front of my eyes.

Earlier on in my visit, I’d listened (as had been requested by a number of friends, readers and colleagues) to see if there were any more fantastic conversations to be had – and the cancerous people of Plymouth didn’t let me down. First, there was holiday advice which ranged from “Keep to the touristy bits if you’re going to Costa Rica, there are some right dodgy types there” to “The Grand Union Canal was the most romantic place I’ve ever seen – the mist and the sunrise were beautiful”. Up next there was actual medical culinary advice for those suffering with mouth ulcers (a common side effect), “try dipping fries in to a McFlurry or a smoothie – it’s quite popular on Instagram”. And then there was the discussion in the waiting room between two ladies who were comparing the greyness and thinness of their hair not just on top of their heads but, well, down below as well. There seems to be something about cancer that makes people open up and care less about who hears it – then again, that could just the people of Plymouth.

Now for the serious bit (skip this if you just come here for the good times). Building up to today’s treatment has been hard, harder than any of us anticipated. Yes, I’ve still been able to work but not as much or as quickly as I would have liked and, yes, I’ve still been able to dismantle our rotting decking but it’s taken me two weekends and it’s still not finished. But mainly, I’m just incredibly tired. This sucks because I live for my evenings when I get to write, listen to new music, socialise a little and generally just catch up with the world. Sadly, now all I seem to be able to do is scroll through the same six inches of Twitter and fall asleep in front of Netflix documentaries about Pyramids or to the soothing tones of David Attenborough or Morgan Freeman.

Don’t get me wrong, I’m not feeling sorry for myself, I know there’s a lot worse out there and, in all likelihood, worse to come for me, but I have genuinely been surprised by just how sneakily the tiredness creeps up on you. Oh, and I’m not allowed to call it tiredness anymore I’ve been told – tiredness can be cured by sleep, this is fatigue and it’s just here to stay for the duration of my treatment. So, aching joints, persistent fatigue and occasionally swollen nerves is all there making everyday life just progressively less fun – a lot like the endless stream of mindless pop pumped out of the radio thanks to the soulless shills at Heart FM which plagued the entirety of today’s treatment. Still, as I was to learn later this very day, that too passed.

THE NEW NORMAL #32 – A LITTLE LESS CONVERSATION….PLEASE

Happy New Year cancer fans, I trust you had a restful and gorge-ous festive period. Without wanting to sound too much like a moody vigilante superhero, cancer doesn’t take a break at Christmas, so I’ve been pretty busy over the last couple of weeks. In between the boxes of Quality Street, gallons of mulled wine and novelty shaped savoury snacks, I managed to fit in two consultations, a CT scan, my first round of Immunotherapy treatment and a visit to my friendly neighbourhood Dermatologist. Yeah, that’s right, I’m like one of those Christmas Day joggers that everyone hates but with a medical team around me.

Anyway, humblebragging aside, I thought I’d start a new year/decade with the good news. The Sarcoidosis thing seems to just be a side-effect (more on those later) of the Melanoma that has set up camp on my pancreas so there’s nothing more to be done with that after my lung function tests came back as ‘well within the normal range’. I’ve also mastered the whole diabetes thing, even coping with a Christmas dinner resulting in no untoward effects although I can safely say this was the ‘dryest’ Christmas of my adult years (despite what my glass recycling box currently looks like – we just had a lot of boozy visitors, OK?). And finally, the big one, the latest of my CT scans has shown that my pancreas has sufficiently recovered from the diabetic ketoacidosis that I don’t need an operation, instead leaving my fate up to the far less knifey alternative of immunotherapy. So, I can eat, drink and be merry (within reason) and I’m sticking with just the three major scars on my body…for now.

On the less positive side (not negative, just less positive) I had my pre-Immunotherapy screening on 31st December which was a bit of an eye opener. That’s right, I spent the last afternoon of the Tens/10s/Teens discussing the side effects of the two drugs that I was about to have willingly plugged in to my veins. To save you all the internet searching fun, here’s a little introduction to the potential side effects of the dynamic duo of Ipilimumab and Nivolumab (catchy names, aren’t they);

  • Skin rash.
  • Diarrhoea/Constipation (hedging their bets there, I feel).
  • Feeling Sick/Nausea.
  • Risk of infection.
  • Pain (quite vague that one).
  • Reduced levels of mojo.
  • Changes in the way your liver works (getting vaguer).
  • Hair thinning (ha, jokes on you Ipilimumab)
  • Effects on the eyes.
  • Breathlessness or a cough.
  • Enlarged penis.
  • Effects on the nerves (specifically making them swell – just about as grim as it sounds).
  • Severe tummy pain.
  • Effects on hormone levels.
  • Bruising and bleeding (back to the vagueness).
  • Changes in the way your kidneys work (really?).
  • Effects on the lungs.
  • Raised blood sugar levels (great news for a fresh new diabetic).
  • Sore mouth/Dry mouth.
  • Spidey senses.
  • High blood pressure.
  • Build up of fluid (winner of the ‘most vague’ award).
  • Changes to your heartbeat.
  • Impact on fertility.

Now, one or two of those may be made up (maybe even three) but even so it’s a lot to take in when you’ve got to get home and prepare your five-year-old for a late night. The slightly more troubling thing is that you then have to sign a consent form basically saying that you’re cool with all of the above, even if it all happens at once because all of that will be worth it if the drugs do work and it turns out that the Verve were wrong all along.

Three days later, I found myself sitting in a wipe-clean recliner at 8.30am with a cannula in my wrist trying really hard to forget the list of side effects. Fortunately, there were a few things to distract me and keep things in perspective. The distraction came from the conversation opposite me between two other treatment patients that would distract most people from any other activity. It went roughly thus;

Patient 1: It’s my son’s 40th soon, we’re throwing him a party.

Patient 2: Oh yeah? Doing anything special for him?

Patient 1: Yeah. My daughter in-law and me are going halves on a stripper.

Patient 2: Oh right.

Patient 1: Yeah. He’s going to be so surprised.

— LONG PAUSE —

Patient 1: It’s a small person.

Patient 2: Um…..sorry?

Patient 1: A small person stripper. You know, like a midget or whatever they’re called, it’s going to be hilarious.

To put this in to context, the pair’s previous conversation had been about how they were both entering their fifth year of chemotherapy and that one of them was aiming to still be around long enough to see his daughter graduate in 2021. From the profoundly humbling to the ridiculous in a way only Plymouth can somehow manage.

In another corner of the same ward was a lady getting her first ice-cap treatment – this is where you have ice-cold water fired around your head at great speed to counteract the hair loss impact of the chemotherapy. The same lady was given a pile of drugs followed by another pile of drugs to counteract the nausea and vomiting caused by the first pile of drugs. By the time the nurse came around to fit my cannula up to the drip, any thoughts of self-pity were once again dispatched (sometimes I think they pay people to be worse off than me just so I don’t get too down).

The first drug takes about 90 minutes to drip into your blood stream during I which I read (Matt Haig), stared out of the window and scrolled through my phone like my life depended on it. When the conversation in the room turned to funeral arrangements and preferences, I put my headphones in to sift through the various new tracks I’d been sent to review for my other blog. At the end of the hour and a half of infusion I was ready to be reconnected to the second drug but there was a little left in the drip and that’s when the nurse dropped something of a mind blower. I was told that we had to wait until all the drug was inside my system for the sake of my health but also because each bag costs in excess of £1000. That’s £2000 per treatment and a total of £8000 for the first course of treatment which, realistically, is not likely to be the last course of treatment. Now, I do OK financially but there’s no way I could afford that without either the NHS, remortgaging/selling my house, or running up serious credit card debt which doesn’t feel like something I’d want to do when I’m sick.

Anyway, I got all my drugs into my veins and after about three hours I was able to leave with a little appointment card stating my next treatment (24th January if you’re keeping count) and a better understanding of what is going on inside me. The reason these drugs are so expensive, you see, because they are clever in that they attach themselves to the T-cells in our immune system to attack the proteins that prevent the immune system from working, thus letting it do it’s job. No pile of drugs, though, no cold-cap and no sign of any medical intervention apart from a tiny hole in my wrist – what a time to be alive? So far, the only ones on the side effects list to have hit casa del Monger are the skin irritation (arm pits, weirdly) and just general tiredness which I’m measuring against my LSW (Long Suffering Wife) to see if this is just post-festive fatigue or something altogether more cancery.

Finally, today I had a Dermatology appointment to check up on my manky toe which is generally good news and, while I was there, I got him to check my pits for which I was prescribed some cream to pick up at the hospital pharmacy. I wouldn’t mention this were it not for the genuinely bizarre conversation I witnessed during my wait for my prescription. As I sat there clutching my raffle ticket (worst prizes ever, trust me), a small man wandered in with his piece of paper and was promptly given his medication, the whole conversation and exchange took place in hushed tones that were inaudible to the rest of the room. So far, so normal, but then he blurted out, at the top of his voice, “do you have any baby oil?”. The whole room did that very English thing of being acutely aware of this situation but also pretending to by oblivious as the pharmacist did his best to locate the requested item; “We used to have it, maybe we’re out of stock….hmmm, sorry”. We could all see the baby oil on the shelf next to the checkout but nobody said anything and as the man shuffled his belongings the next customer moved up and, equally loudly, stated; “you have baby oil, it’s there, on the shelf”. This was the most awkwardly English situation and the worst part was that nobody told the guy and he shuffled off without his baby oil.

Reading that last bit back, it was kind of pointless and doesn’t add a huge amount to the story, there isn’t even a deep philosophical point – it just made me properly giggle because of all the chat about baby oil.

So, my tips for anyone undertaking immunotherapy any time soon would be to wear comfortable clothes, take distractions (books, phones, a Gameboy, clackers* – whatever you generation dictates), take a snack and take either headphones or ear muffs if you don’t want to listen to other people. It’s been a busy festive period but all in all a positive one which is good because I bloody love Christmas and it would be a shame to ruin it.

*Maybe not clackers, I would find that incredibly annoying if you were in the same ward as me.

THE NEW NORMAL #31 – KENTUCKY FRIED CHRISTMAS

I bloody love Christmas. The food, the drink, the presents, the friends, the family and, frankly, the lack of inbox activity. It’s all good. The best bit, however, is the fact that you get to stop, reflect and look forward to a new year, a clean slate and maybe a gym membership….or maybe not. For me, right here and now, I’ve got heaps of reflection and a family size bucket of looking forward with extra fries and a large Diet Coke. However, if my History teaching father has taught me anything, it’s that you start with learning from the past before you move forwards into the future, so here goes something….

In the last 12 months I have managed to get married (awesome), travelled with my family to Mexico (super awesome), started a new job (professional) and saw Aussie legend Kylie and Kiwi rockers Shihad who were both on my musical bucket list (Antipodean). These were all good things and things that a lot of people never get to do, so I feel incredibly lucky (although the Shihad show was only a quarter sold out so if you missed out on that then that’s on you). I’ve also been able to watch my little boy start school, something I wasn’t sure would ever happen, and seeing the pure, unbridled joy on his face as he discovers reading and writing has filled my heart up (to the point where some of it leaked out of my eyes…..as tears, that wasn’t a reference to another freak medical condition where bits of my heart actually start to leak out of my eye holes). I’ve watched some great films, binge watched half of Netflix and discovered some great new music through my other blog (Listen With Monger, check it out). All in all, on that evidence, it’s been a pretty awesome year and that’s what I have to keep telling my self and my long-suffering wife.

You see, throughout the year there’s been a yin to the positive yang, a Wario to the Mario or a Bodger to the Badger, if you will. In the last 365 days, I’ve developed Iritis in both eyes, had my melanoma come back twice (once in the toe, once in the pancreas), had the end of big toe removed, got closer to death than I thought I ever would in Somerset and have developed an insulin deficiency which leaves me not quite Type 1 diabetic but as near as damn it. I spent 5 nights in hospital, had 5 CT scans (at least one of those with a PET), had 3 ultrasound scans (2 from the outside and 1 on the inside), 1 bronchoscopy and more eye tests than I can remember (all thanks to the NHS and my regular National Insurance contributions – in your face, Tories). My weight has yo-yoed according to whether I can eat or not, I ripped the front off my car due to trying (and failing) to drive with a crippling headache after (probably) going back to work too early and I’ve had to cancel numerous social engagements with friends, family and a certain Mr Norman Cook. But, still, all in all it’s been a great year.

Before you ask, no, I haven’t been at the sherry like Theresa May watching the country burn, I’m just genuinely glad to be here. There’s a lot of good around at this time of year but if you listen past all the Wham, constant sleight bells and the sound of ringing contactless machines (doesn’t sound the same as cash registers but nobody uses cash anymore), you will hear the sound of people quietly declining a drink or making an excuse to leave a party early without really giving a reason. For those people, this really has been a shitty year where they are fighting a battle of their own, have lost someone close or, worse, are in the process of losing someone close. I hate being in hospital but when you’re in for a few days and then you get to go home you do come to realise just how precious that freedom and independence is. The folk all around you with semi-permanent poster displays of get well soon cards and 2 inch thick medical records are in there for the long haul and, let me tell you, I NEVER want to experience what a hospital food Christmas dinner tastes like.

Now, don’t get me wrong, I’m not going to sit pretending that I leap out of bed every morning, throw open the curtains and sing good morning to the world (largely because I sleep naked and there is an elderly couple across the road who I might just finish off with such behaviour). No, there are tough times going on for me and my family which are impossible to ignore and it’s only in these circumstances that you realise just how depressing a lot of Christmas songs are. I mean, ‘Last Christmas’ (is it?), ‘Lonely This Christmas’ (I hope not), ‘Stay Another Day’ (not a Christmas song, per se, but seasonal and an uber downer, thanks East 17) and then there’s Mariah Carey but she’s just depressing whether you’ve got cancer or not. The point I’m making (and one I’ve made before, I’m sure) is that however badly off I think I am, there are people I would really rather not swap places with right now. The parents caring for their child with a terminal illness, the family having to spend Christmas in a B&B because they just got evicted, the mum having to visit the food bank for Christmas dinner or the immigrant so far from home or normality that they don’t even know if the rest of their family is still alive.

I’m not saying you have to cancel your plans and donate your Christmas lunch to the local food bank or invite a homeless person in for the day (although if the mood takes you, that’s great) but maybe just be thankful for what you’ve got. Sure, you might have an annoying relative who will moan throughout Christmas day or your kids might be ungrateful screen addicts who’d rather have a Nando’s gift card than actually engage with their grandmother but at least you’ve got those people and they’re there at that moment. If you feel yourself slipping into a festive fug then just step out of the room, stand just out of view and just listen for a minute. Then imagine what it would be like for them if you never stepped back in to the room or if you couldn’t hear those voices – I’ll bet you a whole chocolate orange it will talk you back from the brink of flipping the Monopoly board over in a rage.

For me, I’m looking forward to some downtime before kicking off a new decade with a new bit of treatment. In 2020, I will have a CT scan on 2nd January to see what the melanoma is doing to my pancreas and, all being well, I will start my first course of Immunotherapy on 3rd January. This will involve half a day of sitting in a chair and having drugs pumped in to me that will boost my immune system and generally make me feel better (Adam, before you say it, yes this is what we trained for during three years of university). Immunotherapy treatment will only start, however, if the melanoma hasn’t spread far enough to make my pancreas a danger to other organs otherwise they will need to operate and remove all or some of the infected thing. All I have to do between now and 2020, then, is stay well enough to receive treatment and keep my blood glucose levels in check which is easy with all the healthy eating and exercise that goes on in late December, right? Then again, with my track record…..

So, if you see someone hanging around by KFC on Christmas day in a hospital gown then it’s probably me or a homesick Japanese tourist with bad fashion sense (Google it, the Japanese go mad for KFC at Christmas). Either way, stop and say hello – I could just be having a worse Christmas than you and that will make you feel a whole lot better.

THE NEW NORMAL #30 – SORRY NOT SORRY

I’m not convinced Elton John is English. Anyone who can write a song called ‘Sorry Seems to Be the Hardest Word’ just doesn’t come across as a true-blue, dyed in the wool Englishman considering how ingrained apologising is in the culture to which I was born. I raise this, largely, for the reason that I find myself apologising (or wanting to apologise) a lot at the moment but I have remembered something that a colleague once told me and so I wanted to give it a go. The premise is that instead of saying ‘sorry’ to somebody, you should try saying ‘thank you’ instead with the aim of finding the positivity in every situation. We’ve all seen the memes about over apologising for things we had no control over, and I bet everyone reading this has said ‘sorry’ in the last week for something that either wasn’t your fault or, indeed, didn’t actually happen. Today alone, I have apologised to a lady who I held the door open for and said ‘sorry’ to someone who phoned me by mistake (Sorry you can’t dial a number properly!?!? Madness).

So, rather than issuing a big fat apology for the chaos caused by all my various health issues, which is what I want to do, I am going to say thank you. Now, if that feels far too un-English for you then this is your last chance to go and have a cup of tea with a incomprehensibly tasteless biscuit on the side (yes, Rich Tea, I’m looking at you) while this whole thing blows over.

The first thank you has to go to you, dear reader. Dear friend, indeed. Normally, I would apologise for dragging you in to my misery and all that it entails but today I am, instead, going to thank you for coming along for the ride. The number of people that awkwardly tell me how much they ‘enjoy’ reading my blog makes my heart swell and knowing that you’re all out there, rooting for us, really does make a difference. I also love that I get to make people laugh, cry and just generally feel stuff that they otherwise might ignore in favour of Love Island or Gogglebox so I’m grateful for that. One reader got in touch recently to say that they felt that reading the blog was simultaneously intimate and invisible, like watching someone’s every move through a mirrored window without ever letting them know about your presence. So, thanks for watching, you weirdos.

Next up, I want to say thank you to my family – in blood and in law. I’ve put you through the mill over the past few years and, normally, I would apologise for that burden and emotional turmoil. Not today. Thank you for adapting to all the challenges, for finding new ways to help me and for not getting angry when things don’t go as planned or hoped for. I’ve always said I would go through this ordeal 100 times over than have to watch someone I cared for deal with cancer so I can’t imagine how difficult this must have been, but you’ve all met the challenge with kindness and good humour. If things go south I’ll be coming to you asking for a pancreas donation if you’re compatible though so just keep yourselves healthy so I can harvest your organs, yeah?

Talking of family, I should say a special thank you to my three stepchildren. Not only did they not ask to have me in their lives (note, they’ve never actually said this to me so I’m doing something right) but the disruption that repeated hospital visits and fluctuations of health causes can only have added to the traumas of being in your pre-teen and teenage years. I’m not going to apologise, however, but instead say thank you for just getting on with it, never complaining and for stepping up every time the chips are down to support your mum and keep things going. I’ll take this chance to play the cancer card, however, and say put your bloody shoes away! Guilt, it’s the classy way to be a stepparent.

Work is always an area for a heavy sense of guilt and the temptation to apologise for being sick or just generally lacking in one department or another is strong. Not today, though, sunshine. No, today I thank colleagues and bosses not only for their understanding and empathy but for having the courage to talk to me about what’s going on health wise and for being human enough to have a laugh with me about the absurdity of it all. There have been times when I have felt like I am hiding behind ill-health and I have hated that so I push myself harder and when I inevitably fall off the metaphorical bike you’ve always been there to pick the bike up and either pedal it on yourself or help me back on. It has genuinely been a privilege to work with such a wonderful bunch of human beings; than you for that. That said, if you could see your way clear to getting me a set of stabilisers that would be peachy.

One of the people I want to say sorry to the most but never do is my five-year-old son, Jake. As I’m having an apology amnesty, however, I will just say thank you. Thank you for never getting upset when you visit me in hospital, thank you for seeing the fun side of eating in the hospital canteen, thank you for so excitedly wanting to inject me with insulin and thank you breaking any morose or tense moods with a simple fart or singing the theme tune to your favourite cartoon (currently ‘The Day My Butt Went Psycho’, if you’re interested). Above all else, thank you for taking this all in your tiny stride and giving me the best reason to stay in the game – I doubt (and hope) you’ll ever really understand how much your spirit has helped me through the last few years but I know that at the very least this experience will give you enormous empathy and patience which are great qualities to have.

Last but not least (the furthest possible place from least, in fact), I want to thank my wife. You didn’t sign up for this, you’re a sunshine girl with the lightest, most beautiful spirit and every consultation, hospital visit and ‘bad day’ does it’s best to strip that away. But it doesn’t win. In what is likely to be the weirdest compliment a man has ever paid his wife; you are like a lighthouse. I don’t mean that you’re remote, lonely and hard to arrange furniture in, no, you’re just a shining beacon of light that always keeps me on the right course towards positivity. So, thank you. Thank you from the bottom of my heart for never letting that light go out and for, even in your lowest moments, always being the one person I want right by my side – even when you are gleefully injecting me with blood thinners of a morning!

Now, those of you that come here to wallow in my medical mire might be feeling a little discombobulated by all this but it’s something that’s been rattling around my noggin for a while so I wanted to get it out. In a week when I’ve ripped the front off my car, had the garden tap inexplicably explode at 8.00am on a Tuesday and have been trying to get back in to work it feels good, nay necessary, to focus on the positive that is all around me. We’re all going through our own battles in one way or another, from one day to the next but feeling like you have to apologise all the time isn’t going to make that journey any easier to be thankful for what you have and if you don’t have anything to be thankful for then just be grateful that you’re not Boris Johnson or a turkey being fattened up for Christmas – somebody always has it worse.

THE NEW NORMAL #29 – (YOU CAN’T) CHOOSE YOUR OWN ADVENTURE

Image result for choose your own adventure

It’s been a funny few days, to say the least, but as I sit down to write this update there is a certain calm descending over our normally chaotic household. It could be the calm in the eye of the storm but for now I’ll take the calm and roll around in it like a naked lottery winner on a massive pile of fivers. The calm has been caused by getting used to the self-injection of insulin (my five year old can even do it now), I’m a dab hand at testing my blood and I’ve finished taking the antibiotics so we’re moving on in to something else approaching normal. That said, I’ve now had to inject myself in a pub car park and the toilets at Bill’s Restaurant in Plymouth so I’m getting a weird insight in to being an addict which comes with its own set of social anxieties. I might start marketing a special arm band or hat that denotes that the wearer is, in fact, not a junkie but just has a less than operational pancreas. I’m thinking a nice shade of mauve.

Since being ‘released’ from hospital I’ve done very little aside from rest and listen to my body which sounds about as interesting as it is but I’m slowly learning how important that is to do. So far, my body has said things like “Urrr, I’m a bit scared of cake now”, “Lunch makes me sleepy now”, “Why do you keep stabbing me?” and “Oooh, look, none of your trousers fit now, you’re so skinny”. Oh, and just in case you were wondering, my body’s voice sounds a little like camp Bruce from Family Guy. To silence these mundane voices, I’ve been trying to achieve things each day and my main triumph has been to lodge an insurance claim after our shed and all its contents were obliterated in the recent storms. Yeah, it’s a been an absolute riot.

Moving mercifully forward to today, we had the joy of an Oncology consultation and, sitting in the waiting room, you suddenly realise how blissful mundanity can be. It has often been said that those who have only known peace time take it for granted and I think you can apply that to those that have a normal, straight-forward, healthy life. There’s no bitterness behind that statement and lord knows I wouldn’t wish our current situation on anyone, but if you find yourself wishing for a little excitement then maybe just take a look around and check what you’re putting on the table before the croupier pulls your chips in.

Ominously, my name was called out with complete accuracy and soon we were sat in consultation room 6 – our little home from home, complete with a box of tissues and replica Brian Pollard paintings. Even more ominously, we were left waiting for less than a few minutes (longer than a moment but shorter than a while) before the three amigos arrives; Oncologist, Skin Cancer Nurse Specialist #1 and Skin Cancer Nurse Specialist #2. The full team. Now, if this had been the 80s and the summer holidays then I would have, at this point, been able to choose which page my adventure would lead on to. Choose Your Own Adventure books, however, have laid the foundations for false hope in my adult years and I don’t have anywhere near as much control over the direction my life is going as I had been led to believe. Nevertheless, there were choices to be made whether I had a say in them or not.

The current situation is that my pancreas is still pretty inflamed due to the pancreatitis, as are my lymph nodes and the whole area is generally doing its best impression of my garden shed post-storm but with added fire and horse shit. As a consequence, the surgeons want me to clear up the mess in there over the next five weeks so they can CT scan me again and see what’s left. Once they have a good picture of how far and wide the melanoma has spread across my pancreas, we then hit the fork in the road;

Option 1 – slice me open, whip out as much of the diseased pancreas as possible, stitch me back together and then segue smoothly in to 12 weeks of immunotherapy.

Option 2 – skip the slicing and dicing and move straight on to the immunotherapy (assuming the surgery isn’t actually going to add any benefit).

So, here’s what we do now; spend five weeks waiting for a scan, spend another couple of weeks waiting for the results and resultant treatment plan and then run headfirst down whichever fork in the road is deemed the most fruitful. Right now, we don’t know what is at the other end of this road but, again harking back to the 80s, we didn’t have a Sat Nav and if the road you are on goes off the edge of the map then you just have to keep going. One thing we do now is that we’ll be stopping off for petrol and snacks in Immunotherapy-ville so that will be a new place to visit and send postcards from. At least I won’t be sending Christmas cards though, Christmas is clear unless any other parts of my body decide to just give up and stop working……