So, Casper started school…

Four years ago, in the midst of chemo, we didn’t know whether he’d get to go to school. But he’s just started his fourth week there, and goes in happily each morning (even if he does demand to be carried home on my shoulders if possible). His teacher calls him “Mr Smiley” because he has the biggest smile in class, apparently, and he seems to really enjoy it. We had a few tears in the first week, but nothing unbearable: a few tears here and there are a good thing, anyway.

We’ve had very, very nascent conversations with his team about thinking about exit strategies from dabrafenib. We’d keep him on it forever, given the chance, but it seems as if the trend is towards bringing them off it and monitoring closely to see if the LCH comes back. The idea is scary: the dabrafenib keeps him well and is relatively low-effort. But it’s experimental. Which means experimenting, I guess. They’ll not do anything during his first year at school.

So, life goes on for us. There are bumps in the road, and we still can’t see all that far ahead, but what we can see is alright, right now.

“How’s Casper?” “He’s a dickhead.”

The person you’ve just bumped into and are catching up with, because you haven’t seen each other for ages, because, y’know, global pandemic that’s killed millions and kept people shut in their homes in an unprecedented way for almost two years, may well go all serious and slightly lower their tone of voice and say “How’s Casper?” after a little while, because, y’know, cancer. It’s nearly three years since he started dabrafenib, and, essentially, he’s fine (with lots of monitoring), and he’s also three (AND A HALF) and cute (and also has cancer) so gets away with bloody murder, so the response is generally slightly brutal and tongue-in-cheek. “He’s a dickhead.” “He’s an asshole.” “He’s a wanker.” And then they laugh, and it diffuses the mood a little, and you explain that he’s still on the same drug and basically in controlled remission and ‘fine’, whatever that means, and oh, he was just in hospital yesterday for an ultrasound / ECG / blood test, because we’re still checking him constantly in case it comes back and tries to eat him alive from inside again in secret like it did when he was a baby.

Or maybe an older lady who I don’t know from Eve will see him in the street and comment on his lovely curly blonde hair, “where does he get it from?” she asks, while looking at my straight, grey-flecked brown receding man’s hair, and I’ll have to bite my tongue to not say “oh it’s from his cancer drugs because he’s got cancer”, because it probably is. Simon his consultant calls it his ‘dabrafenib hair’. It’s extraordinary. Golden corkscrews pointing out in all directions. He’s very proud of it. Draws strength from it, like Samson. One day we might have to explain that it’s because of his meds and ergo because of his cancer, and then there’s a whole host of identity crisis questions that come after that – who would he be if he hadn’t had cancer? Are aspects of himself that he loves and takes pride in – like his amazing hair – only there because cancer tried to kill him?

This was meant to be a quick childhood cancer / LCH / Langerhans Cell Histiocytosis update. Because I promised I’d make updates in case anyone found this blog by googling LCH etc because their kid had been disgnosed with it, and they wanted reassurance that god didn’t hate them and things will be alright, and what does LCH look like a few years down the line?

Well, Casper is kind of OK. The future is unknowable – will he stay on dabrafenib forever, will the trial want to bring him off and monitor in the hope the LCH doesn’t come back, will the drug stop working all of a sudden because it’s still an unknown quantity, is this behavioural quirk because he’s three (AND A HALF) and a boy or is it a side-effect? We ponder questions like these a lot. We don’t have answers to any of them. The low-level paranoia and dread you feel never quite goes away. The side-effects on you as a parent can be brutal – I’ve been diagnosed with rheumatoid arthiritis (at 42!), which is almost certainly brought about / exacerbated by the stress of the last three+ years (arthritis being an auto-immune condition, immune systems being ravaged by stress). It’s under excellent control with medication, but, y’know, it’s another added complication to an already complicated life.

So yeah, there’s hope, there’s joy, there’s love, life goes on, etc etc. But it will. Never. Be. The Same.

Back to nursery

Today Casper did his first day at nursery since covid-19 tilted the world off its axis.

He’d only just settled again after the Christmas break when he had to stop going, when we started shielding. A lot has happened since then. Devon seems to be managing the disease better than the rest of the country. Both Casper’s condition and his medication (still twice a day, every day; still working) have been downgraded, so we no longer have to shield. I have worked from home, been furloughed, and am now partially furloughed and working again, three days a week. Nora managed to go back to school to do the last few weeks of her reception year. I had many detailed conversations with his medical team about community transmission rates and infection control and risk vs reward.

He sauntered down our driveway to the car this morning, telling me he was “going to nursery to play with my friends”. I was so proud. When we got there, of course, he cried, but apart from not eating lunch and being a bit sad after his nap he had pretty happy day apparently. I nearly cried on the drive there, as it occurred to me that – aside from the last couple of Tuesdays, when he’s been with grandparents – I’ve looked after him (and his sister) all day, every day, for the last six months.

And then, when Em told me at lunchtime that he’d be going to nursery again tomorrow – which I kind of knew on an intellectual level but clearly had not processed emotionally – I cried in the kitchen.

I’ve had prolonged, close care with Nora – two summers ago, when this all kicked off and he was in hospital all the time – but not with Casper, and I’ve cherished it. Obviously not every second – circumstances have not been easy – but for the most part being primary carer for my children has been wonderful. Especially Casper, for two reasons; two is a fun age, and also because, for so long, we had that paranoia that we wouldn’t have this kind of time with him. Em always used to say that she felt he was temporary, that he was only loaned to us when he was a baby. I must ask her if she still feels that way. Dark moments come every so often, but they’re fewer and further between for me now (especially since the waking nightmares about drug supply chains have dissipated after the first few months of covid-19). I feel like he’s going to be with us for a long time now.

Coping / corona

I wrote this for our work Teams platform to share with colleagues as we get to grips with what looks increasingly like national lockdown. Thought it was worth sharing here, too.

As you know, I have some experience of dealing with prolonged traumatic and unexpected situations, and I just started scribbling down some thoughts on coping, which might be useful.

Initially the novelty of it, the strangeness, is almost exciting – gathering resources, adrenaline flowing, all those post-apocalyptic films and books have prepped us for this, right?

But then comes suffocation, and denial – that sense that you might wake up from this shitty disaster movie you’re now living in, because this is not how life should be. Surely it’ll just stop, because someone got something wrong and we need to hit reset? It must stop. It’s not real.

But then the realisation- you’re not going to wake up from this, because this is life, get used to it, this is normal now, and you need to cope. You have to adapt. You can adapt. You are adapting.

When Casper was first ill in some ways it was easy – there was a medical protocol to follow, lots of support, the normal world fell away and we went into survival mode and just concentrated on getting him treated and looking after Nora.

That’s not the case with this. There isn’t a plan, there aren’t experts telling us exactly how to cope, and we’re trying to deal with work, family, home, emotional lives all at once, as well as the virus and that risk. And by ‘we’ I don’t mean just my family – I mean all of us, the entire country, the world, we’re all in the same boat. Or on the same ocean – our boats vary.

We can and we will emerge on the other side of this, and we will be scarred by what’s happened, but hopefully we’ll have learnt a lot of things about ourselves and each other, about our society and our culture, and some of the things that have had to change might actually improve the way we live in the future.

There will be days – and lots of them – when you struggle. And that is ok. It is ok to wobble, to despair, to cry, to be upset. Accept it, and be open about it. You’re not on your own in this, in feeling this way. Let people help, however they can. It makes it easier, trust me. People’s generosity will astound you, and if you let it your own capacity to cope will astound you too.

Caribou – Suddenly

Let’s try and write something about music again, shall we?

Dan Snaith might be the musician I’ve listened to most music by in the last 20 years. I picked up his debut album (Start Breaking My Heart) not long after meeting Emma in autumn 2001, and his albums since then have soundtracked my life – our life together – in uncanny ways. It helps that he’s about a year older than me, so makes records that reflect those life events and then releases them in time for me to have similar experiences (except he did a PhD rather than just thinking about it, made records rather than wrote about them, etc etc).

2003’s exuberant melange of psych, pop, jazz, and cascading drum samples (Up In Flames) was an epochal record of my time as a music journalist, defining my taste and the weird ‘scene’ or community I belonged to (loosely – geeky 20-something boys spread across the world, connected by the internet, adolescences defined by indie rock, now fascinated with pop, electronic, experimental music, downloading the entire history of music as fast as nascent broadband would let us and mashing it together in playlists, editorial policies, or our own records). I can still remember listening to it for the first time, in the spare bedroom of my parents’ house that I had set-up as a music room, squirming with delight every time a ridiculous sample took me by surprise. I hoovered up EPs, b-sides (“Tits & Ass: The Great Canadian Weekend”, “Air Doom”, give’r), and became a bona fide fanboy.

The Milk of Human Kindness almost passed me by at first in 2005, but then Em and I bought our first flat and moved in together in 2007, and it became our most-played record, used like a piece of statement furniture or an accent wall to stamp our style on the place and make it feel like a home. Cooking dinner? Stick Caribou on. Reading a book and sharing a bottle of wine? Stick Caribou on. Playing with the kitten? Stick Caribou on.

And a month before we got the keys he’d released Andorra, which had refined all the jittery tricks from Up In Flames, grafted them to some awesome songs, and perfected the whole electronic-psych-pop thing before pushing in new directions, with the final couple of tracks, towards that edge-of-collapse dance/electronic/jazz/kraut/whatever territory that I’ve spent the last dozen years exploring (James Holden, Floating Points, Four Tet, Daniel Avery, The Comet Is Coming, Battles, Blank Project by Neneh Cherry, Dan Deacon, Fuck Buttons, Moses Boyd, etc etc etc and on and on and on). 2007 was the final year I really thought of myself as a music journalist – the final year I wrote all the time – probably because it’s when Stylus folded, and it was also – for me – one of the best years for music in my lifetime. And Andorra was one of the best albums in one of the best years.

Fast forward through two years of career hell and minor health problems, and Swim came out in 2010 – the next best year of my life for music, and also when I sorted my career out, got married, started cycling again, began Devon Record Club, and felt like life was what it ought to be. Swim did exactly what I wanted it to, and felt like part of a tripartite of albums – alongside Four Tet and Owen Pallett – that I could call favourites in my 30s in the same way as In Sides or The Stone Roses had been when I was a teenager. Even if he was singing about relationships collapsing on “Odessa” and “Leave House”, the joy, surprise and craft on show was still delightful. We capped it off at the close of 2011 by seeing the Caribou Vibration Ensemble at All Tomorrow’s Parties in Minehead – James Holden and Kieran Hebden and Marshall Allen on stage, plus two drummers, modular synths, four-piece brass section, insanity and delirium.

Our Love in 2014 seemed like another weird synthesis with our real lives – a sonic refinement further into electronic dance territory, but crucially a reaction to having become a father, and a celebration of the way that changes you. Except that – maybe because of the very coincidence that 2014 was when Nora was born – it didn’t quite click with me emotionally or aesthetically like all the others had. “Can’t Do Without You” and “Silver” were amazing pieces of music, up there in my esteem and my heart with anything else he’s done, but nothing else really stuck or seeped under my skin. It was immaculate, but it lacked something crucial, some essence that had connected me to everything previous. Maybe it had stepped away from the edge of collapse?

And so now (and I know I’m discounting the Daphni records – I have them, I enjoy them, but they aren’t the main deal for me) we have Suddenly, a record reflecting adulthood, fatherhood, and the unexpected turns and traumas that can come along. It embraces juxtaposition and surprise, it surfs close to the edge of collapse, it feels more melancholy than anything prior but just as joyous – albeit tempered, perhaps – sometimes almost subdued and sometimes almost insane. And it comes 18 months or so after our horrific, traumatic, unexpected collision with childhood cancer, after Casper being diagnosed with LCH, and it hits me square in the feels. Because it’s a complicated record that covers diverse sonic and emotional territory, very often within the same song, and that’s how life has been since cancer entered our lives. Siblings apologising, parents lullabying, emotions and noise and changes blindsiding you, coming home to uncertainty but it still being home, moments of normal life when you dance and forget what’s happened, eulogies for things that haven’t quite passed yet, that horrific sense of the time that’s gone, that’s been tainted, that’s left ripples of pain through the future even amidst the good feelings.

I’m only three days into my relationship with this record, but I already know how rewarding it can be. I don’t know what’s happened in Dan Snaith’s life over the last few years, and I hope it’s nothing like what we’ve been through, but I’m so glad he’s caught it in music for me again.

Life with aphantasia (not being able to see things in your mind)

“Picture yourself in a boat on a river / with tangerine trees and marmalade skies.” Nope. Not a thing.

Remember all those times at school when you were asked to close your eyes and imagine yourself on a beach, or in space, or whatever? To picture the blood running through your veins? I was a drama club kid, so I had more than my fair share of this. But I never saw anything when I closed my eyes. I assumed no one else did, either, not really. “Imagining” for me was a purely… imaginative… process. Intellectual. Conceptual. Not visual. Not in the slightest. Because I have aphantasia – an inability to see things in my head. A lack of a “mind’s eye”. No visual memory or imagination.

Except I’m not sure “have aphantasia” is the right way of putting it. I am aphantasic, perhaps.

So I got myself on the local news website the other day because of my slightly unusual brane (I’m the human interest hook to an exhibition which is the news hook to an academic conference; this is how media works, kids), and the reaction has been interesting; people either seem to have gone “my brane works the same way, I didn’t realise it was weird” or else “omg I can see things in my mind and you can’t this has Blown My Mind how do you even survive?”, which is an interesting dichotomy that leads me to believe that it’s not that uncommon to lack a mind’s eye. In fact, I suspect a mind’s eye is, like most things, a continuum, or spectrum, with people positioned all the way along it, from seeing nothing at all to having photorealistic imagination and recall.

I distinctly remember a conversation when Nora was small old between me and Em, where Em said she couldn’t picture Nora’s face when she closed her eyes, and that this made her feel bad as a parent somehow. My immediate reaction was that I didn’t actually see pictures in my head, and I wasn’t sure anyone really did in that way, and we both know what Nora looks like, so what’s the problem?

Around about the same time, a press release came out of the office next to mine at work about aphantasia, which I read with interest, but didn’t go doolally over. It wasn’t until several months later that a guy who used to work for Mozilla and Facebook wrote a blog post which went a bit viral.

I read that and went… not quite doolally, but certainly ‘oooh’. My sense of identification increased as I read, as I recognised points about my daily thoughts being a constant monologue rather than a stream of images, about not hearing music in my head beyond the “dum-de-dum-de-dum” of my brain silently humming (rather than recreating an entire arrangement), about how my memory is shocking (good recall on facts, awful recall on who spoke to me when – I’m forever telling things back to Emma that she told me first – or on other details of events in my life), about how I have certain pre-loaded descriptions and anecdotes queued up in my mind that I can reel off when necessary, about being unable to write fiction despite being told by numerous people that they expected me to do so, about the books that clicked with me and the kinds of books that didn’t. Salman Rushdie’s indulgently descriptive prose lost me completely, for instance, but anything where ideas and linear plot are placed ahead of literary evocation tends to stick – even so, I rarely read fiction as an adult, and always, always struggle to follow descriptions. If I do read a book I’m never disappointed with the film afterwards,

I don’t completely identify – I can (or could) draw, I do dream (but it’s nothing like watching a film), and I feel like I do have some, albeit miniscule, degree of visualisation (like catching something in your peripheral vision and turning quickly to look properly but it’s gone), but I definitely felt like I understood his experience far more than the opposite. I catch myself saying “I can see them but I can’t think of their name” quite often, for instance, but I’m not ‘seeing’ a face in my head, I’m just… knowing that I know who they are, and would recognise them if I saw them.

I think of myself as a very visual person – I’m a decent (amateur) photographer, I commission and instruct professional photographers, I write design briefs and approve design schemes in my day job, I sign-off artwork, I used to draw and paint all the time when I was a kid. (I wonder if I could visualise and if it’s slowly evaporated as a skill as I’ve got older? I don’t think it has; I think I never could.)

So I took the test on the BBC site, and came in the bottom 5% of the population for being able to visualise things. I’m not completely brain-blind like Blake is, but any ‘images’ I do get are very, very indistinct, and so fleeting that I can’t concentrate on them at all. Off the back of that I volunteered to be part of Professor Adam Zemen’s further study, which meant filling in various questionnaires and having an FMRI scan on my brain while being asked to picture famous people in my head after being shown pictures of them, the aim being to see if the same areas of my brain lit up while imagining them as when I could actually see them. Because it was an academic study I didn’t get given my individual results, but I might ask for them, as I’d quite like to see scientific proof of the lack of activity in my brain…

This revelation has explained to me a number of behaviours and instincts. I’ve stopped tagging anything or pursuing followers on Instagram, for instance, and have reconciled with myself the fact that I look at my own photos considerably more than I look at other people’s. Because social media is my repository in the absence of my brain doing the job. It’s not *just* that I’m a narcissist.

Some thoughts, in a list…

• “Catching” the memory of a face out of the corner of your eye is a great way of putting it that I saw somewhere. As soon as I try and concentrate on it, it’s gone.
• I much prefer impressionist, abstract art to figurative; I like swirls of colour. A strong visualiser I used to share an office with was very much the other way around and hated any abstract art. Is there a connection?
• I always used to assume that people who said they were, for instance, picturing sheep to count to fall asleep, were being weird and kind of lying. Or just saying “one sheep, two sheep, three sheep” etc silently in their head.
• I don’t tend to get anxious or stressed; I assume partly now because I don’t visualise negative potential outcomes. I don’t really get nostalgic either.
• I also don’t really get that excited about the future, for presumably the same (inverted) reason.
• Yes I am creative; I need to move ideas from the abstract into the concrete, or they get lost. I’m learning more and more as I get older how methodical I need to be about this to preserve ideas, though, and methodical is not always my nature.
• I do not understand ASMR – autosensory meridian response – that thing where people get tickly necks and rushes of warmth from hearing other people whisper into microphones and stroke balloons and slice cheese and stuff, and I wonder if this is related, if aphantasia is connected to how all sorts of sensory inputs are interpreted and relayed by the brain?
• I’ve never done psychedelic drugs so I have no idea whether LSD would bust my mind’s eye open or not. A friend at uni told me I was psychedelic enough already. But it appears I’m not! Not like that, anyway.
• I prefer doing to watching or having done – football and cycling being two examples. I have very little interest in watching other people do these things. I also find it difficult to predict what will happen tactically in a football match?
• Yes I dream; my dreams give a sense of a landscape without any detail.
• I am very intrigued by how hyperphantasia and photographic / eidetic memory work together; I suspect they’re related.
• Yes I know what my wife and kids look like – I can describe them on a factual level, and I would never not recognise them – I just don’t ‘see’ them when I close my eyes. Or you, or anything at all.
• I was very intrigued by my own reflection as a kid, probably more so than usual. I’ve trained myself not to be as an adult (hence very few selfies) so as not to appear to be a narcissist, but I don’t ‘know’ what I look like beyond the brief factual description; brown hair, brown eyes, glasses, beard, 5’8”, etc etc.
• Don’t ask how I masturbate. I’ve got a pretty good idea of how you do. (Joke stolen from somewhere else but I’m damned if I remember where. QED.)
• I think in a pretty constant monologue. Certainly no pictures. Just words, all. the. time. Like I’m writing constantly. Or doing a silent internal commentary track on what I’m doing. If I’m not paying attention to you, if I miss something you’re saying, it’s because I’m paying attention to this internal monologue. Or thinking, as other people seem to call it.
• I wonder if people who were born with sight and become blind through illness or accident can still visualise (if they could before). What about people born blind? How does that work?
• Those people on Record Breakers when I was a kid who could remember a pack of cards by visualising and turning it into a story? Never understood even remotely how they were doing that.
• I don’t really do ‘memories’; I can recall facts about my life, but there is no visual component, just information and, sometimes, emotion.
• I’m pretty level emotionally most of the time.
• I’ve had deja vu but only about four times in my life.
• I experience art, music, and film as evocative, especially the more abstract end – Turner, Dylan, and Loach don’t really do it for me.
• I prefer what I’d call “ambient world building cinema” (good grief that’s a wanky term) where you can revisit, semi-ignore plot, and just kind of hang out in that imaginary world for 90 minutes. Blade Runner 2049, Totoro, Star Wars, Zootropolis, Children of Men.
• Lyrics are not generally that important to me; or seldom the *most* important thing aout a piece of music.

I am amazed at the staggering level of variation in human brains; you cannot take for granted that other people can see, feel, or even perceive things in the same way as you, because they clearly don’t, and I think actually, now more than ever, research about things like this can help us understand and accept that people are different, and hopefully make us more compassionate as a society and culture.

British Airways – a customer service nightmare

Addendum
So I emailed the CEO of British Airways and got a reply; it’s at the bottom of this post. I’ve also tried contacting Martin Lewis, the Money Saving Expert guy, and BBC’s Watchdog, because there seems to be some kind of media curtain preventing this from being talked about. I guess it’s World Cup and Wimbledon time, so who cares about people stranded on holiday without their luggage?

I’ve also heard about people in far worse situations than us: cyclists on biking holidays who’d paid extra to ship their bikes and been left without them; people who’ve flown to Bogota to go travelling round Colombia (surly an amazing place to be right now thanks to James Rodriguez and friends) who’ve missed internal connecting flights; people meant to be going to weddings left without expensive suits and dresses; and many more besides. The people affected by this are, sadly, legion, and they’re all massively upset with British Airways.

Onto the actual blogpost…
This was always likely to be our last holiday as a couple, before we became a family; it might have been booked a few months before we got pregnant, but we knew we were trying and there was a sense that this would be a last jaunt together. Growing up by the sea, with parents who weren’t big travelers, means holidays have always felt like the ultimate luxury to me. I didn’t go abroad until I was 25.

So I’m rubbish at holidays; Emma has to do all the arrangements, and I find it difficult to relax and switch off, which is hard on her because she loves travelling and unwinding. We’ve managed to go abroad only a handful of times in the 13 years we’ve been together: long weekends in Barcelona and Morzine; a short honeymoon in New York; a week each in Andalucia, Ibiza, and Sardinia.

This trip to Sweden wasn’t quite a city break or a rural retreat; we’d be half an hour outside Stockholm, in a cabin next to water, and we’d spend the days walking, running, bike riding, and reading, with perhaps one day in Stockholm itself. We knew the weather would be changeable, so we’d packed accordingly; jeans, jumpers, waterproofs and trainers as well as shorts, suncream, and t-shirts. But this flexible, bulky packing was OK, because we were flying with British Airways and thus could take a bag each.

Except that we were flying with British Airways, so they lost our bags. Because that’s what they do these days.

I’m hesitant to say our holiday has been ruined, because that sounds dramatic, but it has been ruined. Em is 20 weeks pregnant, and her entire wearable wardrobe is in her bag. Her running kit is in her bag, along with a legion of skincare products because her hormones are currently crazy and she needs more stuff than usual.

But it’s OK, because this is British Airways, and they’ve got a good reputation for customer service, haven’t they?

If ‘customer service’ starts and stops with a generous baggage allowance and a cheese and ham sandwich during your flight, then yes, they’ve got that locked down. If it stretches to solving your customers’ problems, that you have caused, then no. This holiday has been an absolute customer service nightmare for British Airways, and here’s why.

They let flights take off when they knew people’s luggage wasn’t aboard
If we’d known our bags weren’t aboard and that there was a problem, we’d not have flown, as simple as that. Emma’s pregnant, we were only going away for a few days, and we knew that Sweden in changeable conditions without your stuff would be difficult to deal with. It wouldn’t have been worth the hassle. But BA never communicated that our bags weren’t onboard. Apparently other people had seen baggage chaos at Terminal 5 due to conveyor belts not working, but we’d checked in quite early, at a working belt with no queues, and seen no problem at all.

Lack of proactive communication
To be fair, we knew about the mess before most people on our flight because Em got a text message saying one of our bags hadn’t travelled with us when we landed. Yay for contact details and mobile roaming. But that’s the ONLY contact we’ve had. No follow-up message to reassure us that steps are being taken, no apology, nothing. It’s easy to bulk send text messages; I’ve arranged it at work. So why aren’t BA doing it?

Not responding to emails
Obviously they’re going to be receiving a lot right now, but BA are a massive, multi-billion pound company with an international reputation; surely responding to customer queries and complaints via email in a timely manner – 24 hours, I’d say – is a key performance indicator? We emailed on Thursday evening as soon as we got to out destination. It’s now Saturday night, 48 hours later, and we’ve had no reply.

Useless telephone helpline
If you’re not answering emails, you can at least answer the phone. Can’t you? No; BA’s automated 0844 ‘choose your own adventure’ phone line is sifting people into a 45-minute queue. People who are on mobile phones, abroad. We literally can’t afford to sit and wait that long.

Sending the same generic responses to everyone tweeting at them
With no response via email and phone, we resorted to social media. And we got a response, but it was the same generic “we’re doing everything we can” response as everyone else in the same predicament got. Useful. (We’ve seen no one tweet at BA that they’re grateful to have got their bags back, by the way; and we’ve been checking.)

Failure to provide guidance as to what constitutes ‘essentials’
We’ve been referred to a generic webpage about ‘essentials’ that BA are happy to reimburse for. Except that they don’t details what ‘essentials’ are; toiletries and clothes, we assume, but what about data roaming and international call charges? And how much clothing? I was wearing shorts and a t-shirt on the plane, because it was 23 degrees in London the day we left. It’s 16 degrees in Sweden. We’ve got no washing machine in our cabin. The light jacket I’ve got with me isn’t waterproof. But at least I’ve got a jacket; Em’s was packed. The BA website gives no guidance about this, not even an upper limit on what they’ll reimburse.

Continued to let flights go before they’d adequately fixed the problem, thus compounding the issue for everyone already affected by increasing their own workload
This is hopefully pretty self-explanatory; not only are they adding more people to the problem, they’re making the problem more difficult to solve, and therefore worse for everyone, by doing so.

Supplied disinformation, or worse, no information at all
We were told our bags would be on flights later that day, and given times. But we’ve heard nothing since, and the online system just repeatedly says “tracing continues”. Are our bags at the airport in Stockholm? Are they in Heathrow? We have no idea, and presumably neither does anyone else.

Postscript

Still no sign of bags or anything beyond a generic social media response. So I’ve emailed Keith Williams (keith.x.williams@ba.com), the CEO of British Airways, because maybe he’ll reply more willingly than his staff. This is what I’ve said:

Dear Mr Williams,

Due to yet another baggage cock-up at Terminal 5, my wife and I have been left without our bags for several days, which has ruined our holiday. As no one at your company appears to be responding to emails, giving useful information via social media, or sorting out the 45-minute queue on your customer service ‘help’ line (that, as we’re abroad on mobile phones, we’re loathe to sit and pay for), I thought I’d email you.

Details of the complete failure of your organisation’s customer service can be found here: http://sickmouthy.com/2014/06/29/british-airways-a-customer-service-nightmare/

Several hundred people have already read this. I’m doing my best to make that several thousand; not just for my wife and I, but for everyone else who has been left feeling let down and neglected by your organisation. As CEO it is your responsibility to set the ethos, values, and spirit of British Airways. Right now I feel quite strongly that you have failed at this.

Yours frustratedly,

Nick Southall

Post-postscript
I got a reply from the “chairman’s office” at BA (I’m skeptical; it reads like bog-standard customer service text). This is it:

“Dear Mr Southall,

Thank you for your e-mail to Keith regarding the baggage system failures on
the 26th June, as part of his Executive correspondence team he has asked me
to respond on his behalf.

Please accept my apologies for the inconvenience the delay to you baggage
is causing. The baggage team, with help from our engineers and cargo
handlers, are doing all they can to reflight disrupted bags as soon as
possible. The baggage system is currently running at normal capacity to
manage today’s flights but we are still unable to use Terminal 5’s systems
in the way we would like to speed up the repatriation process and are
having to invoke a manual process to reload disrupted bags and this is
slower than using the automated system. Unfortunately this means the
tracking system (World Tracer) takes longer to update customer baggage
information. Heathrow Airport continue to work with the IT engineers to
fully restore the automated system.

We are prioritising bags in order of age and by the next available flight.
Once your bag has been reallocated a flight the details should appear on
World Tracer. However, due to the manual processing, some bags are being
delivered without World Tracer updating. These bags are being loaded
directly onto flight containers and World Tracer will be updated once they
reach Stockholm. You can check World Tracer via this link with the baggage
reference you have been provided with
http://www.worldtracer.aero/filedsp/ba.htm

Should you need to purchase essential items during your trip please do so.
To ensure we can process your claim as quickly as possible, please keep all
receipts and submit them as directed on our baggage compensation claim form
where we will seek to reimburse you as quickly as possible. Please use this
link to submit your claim: https://baggageclaim.britishairways.com/

I appreciate you feel our handling of this situation has fallen short of
your expectations. I can assure you we are working continuously to reunite
our customers with their bags.

Yours sincerely,

Paul Kemp
Chairman’s Office Executive”

There is very little in there which isn’t just repeating information we’ve already found inadequate on BA’s website.

What I talk about when I talk about board games

So I’m in a little club that meets up every couple of weeks and plays records for one another – you can read about it here if you don’t already know – and I obviously write about that a lot, because it’s an intrinsic part of the club.

But I also, sort of, belong to another club, that isn’t quite as fascistically run and doesn’t require blogging about as a pre requisite of taking part. Which is weird, that I’d be in two clubs, because I was barely ever in even a single one when I was at school. Or out of school.

But the other guys in this second club keep complaining that I haven’t blogged about it yet, and so therefore I must be ashamed of it, because I blog about everything I do. Which isn’t quite true.

So consider this a blog about my other club. Which we sort of jokingly refer to as Devon Board Game Club. Because once a month, for the last five months, we’ve met up at one another’s houses and played board games. Generally German ones, with little wooden pieces and lots of cards. Not Monopoly. And not Games Workshop stuff.

So far we’ve played Settlers of Catan, which involves gathering resources and trading and building settlements. We’ve played Carcassonne, which involves laying map tiles and building castles and farming. We’ve played something called Agricola where you just farm, but in a more complicated way. We’ve played Small World, which is about rampaging nuns and cave trolls and undead elves or something, which I didn’t quite understand. And we’ve played Discworld, which is about Terry Pratchett. Sort of.

And it’s fun. I’d say something more profound, but there isn’t much to say. I’ve never really got into computer games. I like gathering round a big table with friends and eating pizza and rolling dice and swearing and plotting and laughing. It’s good fun.

Just a cat

Bob is ill. Has been ill, now, for three and a half weeks. We’re not sure what’s wrong with him, but it seems likely that it’s viral cat flu. How he got this, we don’t know; he doesn’t go out and he’s immunised, and has a booster every year. He’s full of snot, and consequently hasn’t eaten of this own accord since the end of last month, apart from once, at the vets. Other than that we’ve been syringe-feeding him.

We’ve had blood tests and know it’s not bacterial or fungal. His nose has been flushed with water so we’re 99% certain it’s not a foreign object. He’s been tested for FIV (feline immunodeficiency virus) and he’s not a carrier. His heart is fine, his lungs are fine; apart from his snotty sinuses, he is in good health. He’s five and a half years old and a big, strong cat.

But he’s lost over half a kilo in weight. He’s lethargic and depressed. He spent two days at the vets, in the first week of his illness, on a drip, because he got dehydrated. We’ve kept him as hydrated as possible ever since, feeding him special paste food, high in calories and nutrition, that we mix with water and syringe into his mouth. At one point, early on, he accepted this, and sat on my lap while I did it. Then he got fed up of it, and started fighting me, so we’d have to do it with him wrapped in a towel, swaddled up like a baby. He isn’t a baby; he’s just a cat. As people keep reminding us.

We’ve spent hundreds and hundreds and hundreds of pounds on tests and antibiotics and stays at the vets and anti-inflammatory drugs and Olbas Oil and cotton wool balls and this weird feline Lucozade that tastes of chicken stock and sachets of smelly tuna food to try and tempt him to eat. Cosmo, who has no symptoms at all, and seems, as always, invulnerable, has eaten and eaten and eaten, as Bob begs for food, and then, every time, sniffs it, smells nothing because his nose is blocked, and then turns away. If cats can’t smell, they don’t eat. Their world is experienced so much through smell.

We’ve tried everything the vet can suggest, and he’s not getting any better. We simply can’t afford, financially, to try anything more, other than supportive care – liquid food, steaming Olbas Oil at him, keeping him warm, showing him we love him, willing him to get better. He’s just a cat.

Except he isn’t. He’s our first cat, and as such he’s a huge emotional investment, a totem of our relationship, our lives as lived together. We got him within weeks of moving in together almost five and a half years ago; just less than four months ago we moved him from our flat into our new house. We chose him, named him, loved him from the start, washed the shit out of his fur when he was a clumsy kitten, wooed him when he was grumpy, made a fuss of him when he was affectionate. He’s a ragdoll, so he’s affectionate in ways that people who don’t know the breed won’t understand. Their temperament is more like dogs’ than cats’; they follow you around, wonder what you’re doing, talk to you constantly, demand that all doors are opened to them, sit on your lap when you’re on the toilet, sleep on your pillow, rush to the front door when you get home from work, sulk for an hour when you’ve been away overnight and then slather you with affection when you’re back on the sofa with them and a glass of wine, where you belong. Bob in particular is a cat full of personality; grumpy and demanding, but so utterly full of love for us and full of faith and trust in us.

When people find out how much money we’ve spent on trying to find out what’s wrong with Bob, and trying to make him better, over the last few weeks, I can tell that they think we’re mental. We could have had him put down and bought two or even three new cats of the same breed for what it’s cost us. But none of those cats would be Bob. We just have to make him better. He has to get better. Even if he’s just a cat.

Post-script: Thankfully, brilliantly, and with perfect timing, Bob started getting better literally within hours of me posting this: when we went to bed that Saturday night he was sick on the kitchen floor, and kept us up half the night hacking and urging and mewling. I was just about ready to put him in a sack and head for the river at 3am, because it seemed like the humane thing to do.

But by 7:30am he was completely without snot, and asking for food again; so we gave him some, and he ate it. And he hasn’t stopped since. 11 days later he’s put weight back on, and is his usual, grumpy, demanding, peculiar and affectionate self once more.

All the test results are back from the labs, and the vet thinks it was a bacterial infection which his body just took a long time to recover from; this means it shouldn’t ever come back.

We’re all delighted, as you might imagine. Especially Cosmo.