Gone Fishing

The following short post is in response to Writing for Wellbeing, an initiative by the University of Liverpool, Literature & Science Hub. The course ran throughout the Covi-19 lockdown period and encouraged people to write in response to 9 different themes. This piece is from a prompt about nature as metaphors in mental health. 

I like to cast my net far and wide. A skill I have mastered from 37 years of making four beds every morning. The muscle memory serves me well.

The net encompasses the whole body of water, overlapping the shore on the other side, bullrushes, and rocks poking through. The objects that lay on the far shore are lost and forgotten, like toys taken to play outside and left in the rain.

The net sinks deep in places where the current is strong. On my own, it takes all my might to pull the catch to the surface. Entangled with the outstretched claws and tusks of polar bears and elephants, suspended in the dark trenches and cold water.

There is no fight for breath anymore. They wait patiently to be brought back to the surface to be disected.

The shallow pools offer a more palpable yield. Flamingoes in formation, performing their rudimentary dance. It’s loud and chaotic but the routine brings me peace and clarity. I catch flamingo on every trip and they are delicious.

Lemurs, on the other hand, cause me grief and give me life in equal measure. The most challenging of my daily catch, the striped tails mesmerise and disorientate me and I regularly lose my balance.

Sometimes they resist with such force, the struggle tires me to tears. Other times they are curious about my methods and indulge me, coming right to the surface to reach out or inspect the net and my equipment, before darting away. The unobtainable Lemur, always slipping through my hands.

I am committed to the notion that successfully catching a Lemur, will make me an accomplished angler. For now, I will feast on flamingo and nurture their existence on the water.

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The Tin Opener

The following short post is in response to Writing for Wellbeing, an initiative by the University of Liverpool, Literature & Science Hub. The course ran throughout the Covi-19 lockdown period and encouraged people to write in response to 9 different themes. This piece is from a writing prompt about technology and the environment. 

A stalwart of the cutlery drawer. A modern-day essential ‘bit of kit’. As I sit here in perfect solitude watching great big clouds float by, dragons, bikes, and pitchforks captured in mirror image over the vast lake, I turn the tool over in my hands.

From Heinz 57 to the ground beneath my feet where the ingredients are sourced. The rich, unmistakably earthy smell fills my nose and throat and transports me back to a time of Land Girls and victory curls and a sense of purpose, a day’s work well done. Propeller planes engine overhead then and now, bring me back to my temporary home under the clouds.

Cutting through the earth the mechanical teeth take a clean and greedy mouthful of soil and grass, crawling with wildlife.

A sod, laden with all the nutrients, goodness, and greens yet it cannot nourish my soul with enough enthusiasm to take a bite.

A can of worms is what I have opened, and now I am no longer hungry.

 

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Crocs, Geese, and Giant Strawberries

There are fundamental signs of getting old, and choosing to buy a pair of Crocs is undeniably one of them. It’s official, I am middle-aged. Shouldn’t I be buying a sports car and dating a 22-year-old?

Alright, so the old adage of suffering a mid-life crisis is a bit outdated, but seriously, I want my PORSCHE 911! I’m joking, although I have bagged a younger man, but that’s not news.

The weather during lockdown has been nuts. 30 degrees one day followed by 8 days of solid rain, followed by a week of mid-twenties and 40 days and 40 nights of rain again. Like I said, nuts. I wasn’t prepared for summer.

I panicked. I didn’t know what I was doing, I just knew I didn’t want to wreck another pair of Adidas Campus by wearing them without socks, to avoid tan lines and before I knew it I was on the Very website looking at flip flops and then didn’t stock my size in Havaianas and then after three hours of scrolling for stupid flip flops, I just went for plain black, hit order and logged out.

I wasn’t even excited when they arrived. I opened the bag and there, staring back at me, were Crocs. Not Crocs like, Crocs. They’re not mules that you slip your feet into. They don’t have air holes in the front, nor a strap that goes around the heel. They don’t have Crocs written anywhere on them bar the sole, and they don’t have the logo. Oh God, I bought Crocs, didn’t I? Shit.

The weather stayed warm and so I wore them, making sure to hide them from my teen in case she started legal proceedings against me. It’s been three weeks and so far, so good. Having published this, I won’t be surprised to find my secret Crocs have been kidnapped like in some summer sandal version of Taken. I can’t see Liam Neeson turning up to rescue my flip flops. Can you?

From crocs to geese! Yesterday I wrote about The Untitled Goose Game on Nintendo Switch and oh my days, it’s so addictive! The other worrying aspect of this game is realising that acting like a complete asshat is actually really fun! Scaring a kid into a phone box by honking at him, stealing household items from the shop, lobbing a pint glass in the canal, and smashing valuable vases is a riot! Anyone else played it yet? What do you think?

Where do the Giant Strawberries fit into all this, you may be wondering. It’s simple really. I managed to get a shed load of work done today, loads of research, I’ve started making more progress on HHT Kids too. Funding, set up, content creation, talking to our website designers, getting the ball rolling with organisation status, etc. I’ve cooked, cleaned, emailed, called, text, typed, and listened. All-day long. (Still no strawberries?!)

At 5:30pm we packed up some snacks and headed out to a new park for an alfresco dinner and some exercise. I met the cutest dog, annoyed my boyfriend by calling him for no good reason, took loads of photographs, hid my little boy as he took a quick leak in the bushes, and cycled home. Bit of TV and everyone into bed.

Here I am, trying to not rustle the packet of Giant Strawberries I told the kids must have ‘fallen out of the bag at the park’ so I don’t have to share them. The old ones are the best!

 

 

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Summer Loving

It’s officially July. This makes me happy for many reasons. A fresh start on my Everton calendar (oh hi Tom & Dom), a fresh start in my diary and it feels like summer again, which to me, means great music and good times. 

I’ve just updated the Mixtape section of the blog with 31 of my favourite tunes for the month ahead. As usual, it’s a real mixed bag in there. Everything from Beyonce to Al Green, Doves, Nick Ellis, Sinead Harnett, Earth Wind and Fire, and the King himself. Give it a listen here and send over any new music recommendations to katereillyjames@gmail.com.

Elsewhere, it’s set to be a busy month. I’ve just had a second art commission confirmed, which I’m mega excited about, more on that soon. Having just gotten into the swing of things in my new job, I’m finding managing working from home difficult.

The kids are home all day and crave structure and while I’m learning all kinds of medical terminology and working out marketing strategy, they’ve been spending way too much time on their ipads. Back to homeschool planning and prep for me!

We discovered the most awesome Nintendo Switch game earlier today. Untitled Goose Game is bloody hilarious. You play a goose, let loose on a local village and the aim of the game is to be as annoying as possible at all times.

There’s a dedicated honk button and your to-do list consists of tasks such as ‘grab a pint glass and chuck it in the canal’ or ‘lock the little boy in the phone booth’. Honestly, I’ve howled laughing playing it with my very impressionable 5-year-old. I was slightly mortified when he asked me what a phone booth is?! God, I’m so old. Check out Untitled Goose Game here.

Absolutely chuffed for the Toffees today (COYB!) and a home 2-1 win against Leicester and our first penalty of the season, at Goodison. Still not loving the fake crowd noise but a win is a win! Bring on Spurs on Monday.

Had white chocolate Coco Pops for dinner (thanks again to @Kelloggs for the fab nutrition advice for HHT patients) while emailing the European co-chair of the VASCERN HHT group for some advice about setting up HHT Kids on Instagram. If you don’t already know my HHT story and why it’s so important to me to raise awareness of this rare, vascular disease, you can get the low down here.

So after a 3 mile, 9pm walk with the little ones, I’ve blitzed the house, prepped homeschool for tomorrow (for me and them), and flopped into bed to get my first blog of July done – only to realise it’s already the 2nd…bugger!

Happy July Everyone, hope it’s a cracker for you.

 

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HHT & Me

Imagine being on the train or bus en route to work, or in the office on the phone to a client, or live on the radio chatting about topical news stories, or watching your kid’s christmas play, or on a date, or simply just walking down the road….and your nose explodes with blood.

Imagine this happens 4 or 5 times a day, with absolutely no warning. This is just the start of life with HHT. 

Ossler-Weber Rendue Syndrome or HHT (Hereditary Haemorrhagic Telangectasia) is a genetic vascular disorder in which blood vessels form abnormally, this can cause serious bleeding. The abnormal vessels can be seen on the skin as red, sometimes purple spots. If a bleed occurs in a major organ, just as the liver, lungs or brain, it could result in life changing consequences.

You’ve probably guessed from the term hereditary, that I’ve had HHT all my life. I went through school having nose bleeds (epistaxis) all the damn time. Like, most days. My Dad and my brother were the same. Waking up to find my pillow case covered in blood was completely normal from the age of 10.

I loved sport, but often found myself on the side line with a wad of tissue shoved up my nostril. My poor dad could barely get in the shower each morning without his nose kicking off a stream of blood all over the towels and play fighting with my brother was guaranteed to have us fighting to get to the bathroom for toilet roll before too long.

My parents said we had ‘weak noses’ and seeing as we had never complained of any other, serious ailments, we just got on with it. We never had any notion of these symptoms being something much more dangerous.

Cut to May Half Term, 2018. I’m a mum of three. Two girls aged 12 and 6 and a little dude age 3. It’s Thursday, early evening. We’re having dinner and my 6 year old comes to me and says mum I don’t feel very well. A split second later she throws up handfuls of blood clots, and once she starts, they just keep coming. If you’ve ever seen the cherry-pip scene in The Witches of Eastwick, you’ll get the idea.

I call my mum to come and watch the other two kids and race the 6 year old to the children’s hospital, which thankfully, is just 5 minutes up the road.

4 hours later, the A&E staff still cant work out what’s wrong with her and why her oxygen saturations are at 83. She’s tired by smiling. Drinking and fully responsive. She has a seated chest x ray and we’re admitted to a ward.

In March 2018 I had taken her to the same A&E after 5 days of high temperature, when she went listless and her lips turned blue. After an x ray, she was diagnosed with influenza, admitted and then discharged with Tamiflu. Within 4 days she was right as rain and back at school.

Cut back to May 2018 and the chest x ray results came back. What had shown as a 50p sized area of inflammation in March, had grown to more than triple the size by May, and it was making my girl very, very poorly.

The respiratory team suspected tuberculosis and she was put into quarantine. I was sleeping on the sofa next to her every night over the bank holiday weekend. She was send for other observations but there was no definite diagnosis.

The Tuesday was a hot day. The tiny hospital room windows only opened a fraction and we were desperate for fresh air as well as news. Our respiratory consultant introduced us to Professor Calum Semple, a child health and out-break medicine specialist. Professor Semple came into the room, introduced himself, asked my daughter how she was feeling and what had happened. He examined her and then he asked me if I’d ever had nosebleeds and for how long I’d had the red spots on my hands and chest.

35 years worth of jigsaw pieces fell into place in just a few moments as Professor Semple explained what HHT is and how sure he felt my daughter, and likely me and other members of our family also had the disorder. Unfortunately for her, an abnormal vessel had formed in the lower chamber of her right lung and it wasn’t possible to stem/remove it.

A number of further tests were performed, a prescription for tranexamic acid was issued and a surgery date set for August 2018. Genetics were also informed and my eldest daughter and son were to have blood tests to see if they too were carriers. My eldest girl tested positive, my son is negative.

My middle daughter had a lobectomy on 21st August 2018 and despite a suggested 6 day stay in hospital, was home in just two. She’s made a full recovery and was even back at swimming lessons by January 2019.

The scary thing about HHT is that there is no cure. The bleeds can be as light as a nose trickle or life-changing AVM’s (arteriovenous malformations) in a major organ leading to stroke, organ failure, seizures, anaemia, an increased risk of major bleed in pregnancy and more.

There’s also a chance that absolutely none of these issues may arise, and you go through life without any HHT issues. The ‘ticking time bomb’ feeling however is having an adverse effect on my mental health since my daughter got sick. If it was just me, I could likely deal with that. But now we know my dad, my brother and my two daughters are all HHT carriers, I’m reminded every day that my loved ones are at risk.

The UK lags behind many other countries in terms of HHT awareness and treatment. I’m incredibly grateful for Professor Semple and the respiratory team at Alder Hey Children’s Hospital. A HHT clinic has now been established and my daughters are monitored regularly for changes in their health as well as offered additional treatments to try and aliviate the daily symptoms – ie. nosebleeds and fainting spells.

I am now a patient of an ENT specialist and have since had laser surgery on my nose in an attempt to stem the nosebleeds. Unfortunately it was just 18 days post-surgery before my symptoms returned to ‘normal’ and I was back wishing I’d bought shares in Andrex when I was a teen. I’m due a review any day now but due to Covid-19, there are many others waiting for an appointment too.

People who know me well, know I have nosebleeds at the most ridiculous of times. That list at the top of the article? All of those have happened to me on a regular basis. My worst bleeds last over an hour and leave me feeling tired and embarassed. Some have left me literally, covered in blood when I’ve not managed to catch the blood flow in time, one particular school-run sticks in my mind. All down the front of my coat and half my kids friends being too scared to come anywhere near me.

Christmas 2019 was particularly bad. My nose started at my boyfriends place. He knows about my HHT and I’ve managed to keep a lid on it for the most part. My nose erupted at his place, and I mean erupted. It was like an episode of Dexter in ther. Blood up the bathroom tiles, sink, floor, me!

After 45 mins sat on the floor and attempting to clean up, I managed to go sit on the bed. Only for the vein in my nose to blow a second time. Another half an hour later and I’d lost os much blood I was around 10 mins from heading to A&E for a blood transfusion when it slowed and finally stopped. I was so embarassed.

They happen every couple of months but it’s the lighter bleeds, which happen 4 to 5 times a day that get me down. The longest I’ve gone without a nosebleed, since my laser surgery in June 2019, is 5 days. 5 days of bliss. As I’ve gotten older my telangectasia (red/purple blood spots) have gotten prgressively worse and more noticeable. My tongue is covered in them and the ones on my face are much more obvious. My dad and brother both suffer the same frequency of bleeds and spots too.

My eldest daughter is 14 now and suffers with daily blood clots as well as bleeds. She’s had to sit out of lessons having fainted due to low blood pressure and anaemia. She’s embarassed about having to spit out blood clots, sometimes a number of days after her last nose bleed.

HHT is recognised as a rare diease, effecting 1 in 5,000 people. Many HHT patients go undiagnosed as nosebleeds can be quite common. Many HHT sufferers have AVM’s which cause no issues and HHT is very much a disorder which is acted upon when it presents problems. Reactionary rather than preventative and this frightens the life out of me.

There are on-going clinical trials for HHT in adults. Thalidomide has proven to be effective in reducing, and in some cases stopping nose bleeds (epistaxis) altogether. The Genomics team we’re working with have given us, as a family, incredible insights into genetic selection for the girls and if, in the future they want to have children of their own and not pass on the faulty HHT gene.

It was a genetic psychologist who, at an appointment to test my son for HHT, asked me for the first time, if I was okay. Having gone through a terrifying ordeal of seeing my 6 year old gravely ill and not knowing what was wrong. To discovering soon after that my loved ones are also at risk from the same dangers and then wondering what the hell I would do if it was me who got sick with an AVM. I had been running on auto-pilot for months.

It’s been two years since my daughter first got sick. It really is a case of every day as it comes and should HHT throw us in the deep end again, we’ll learn how to swim again. In the mean time I’m investigating what other treatments are proving to be effective and looking at research from other countries on how to combat the debilitating daily bleeding.

Of course I’m sat at my laptop writing this with a wad of kitchen roll up my left nostril while my eldest daughter is in the bathroom using up all the tissue for her own nose bleed. Just because we’ve normalised it at home, it doesn’t mean we, or more so, my girls should have to suffer with it.

If you or someone close to you has HHT and you’re based in the UK, I would really like to hear from you. Drop me an email Katereillyjames@gmail.com or find me on Twitter @Katereillyjames. 

You can find out more about HHT on the official NHS pages here. Also, the HHT UK Facebook group is a great place to get support and hear how other people and their loved ones are coping with HHT. Find out more here. 

 

 

 

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I Need New York

When I’ve had a crappy day or my head is filled with made-up scenarios and situations I’ve made ten times worse by overthinking, only a trip to New York can soothe me.

Sadly I’ve neither the money nor the physical ability to hop on a transatlantic flight right now. So the next best thing is Sex And The City. I know, I know. It sounds utterly ridiculous but losing myself in the drama of four, wealthy, successful women, living it up on the streets and Park Avenue apartments of New York, is good for my mental health.

We’ve all don’t shitty things in our lives. Lied, cheated, been selfish, whatever. But somehow, watching fabulously-dressed, no f&ks-given, women make these same mistakes, is pretty spell-binding.

Carrie is awful to Big, he can’t commit. Carrie treated Aiden even worse. He needed security. Trey can’t get it up, Charlotte just wants to be loved. Harry loves Charlotte, just like she wanted, only initially she’s ashamed of him/his appearance. Miranda wants her independence, Steve just wants to adore her, and Samantha? Samantha just has it all.

Since SATC hit UK screens back in ’99, the overriding question was always, “which one are you?” Same went for The Spice Girls. The stigma being if you were a Samantha, you were a bit of a slag. Fast forward 20 years and I’m fully admitting that I’m a little bit of all of the SATC characters – guys included. Just not Berger. Don’t be like Berger.

When everything around me feels like it spiraling out of control, the ultimate chill is a full back catalogue binge. Followed closely by Gossip Girl – although I can’t see Dan as innocent after becoming hooked Netflix series ‘You’. If you know, you know.

I have deadlines looming early next week so I can’t currently afford to lose two days to New York and high fashion. I’m going straight in with the first movie. Expect tears, but an altogether much happier me in around 2 hours time.

 

 

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Spark Joy

I know a grand total of zip about Marie Kondo and the Japanese art of sparking joy – but I do know how to buy stuff off the internet which makes me happy. 

I woke up this morning feeling a bit meh. A series of events last night left me puzzled and my fitful 5 hours sleep did nothing to lighten my mood. To add to the meh-ness (fully aware that’s not actually a word), my phone charger is goosed and my peonie roses have died. Oh, the injustice.

Shopping makes me happy. The physical art of shopping. I miss going for a mooch around TK Maxx and Size? in particular. Shopping online is a poor substitute. However, it does at least give me access to items that will bring me some joy. I’m soon to be the proud of owner of not one, but two gloriously green, leafy house plants – and a new Apple lightning cable.

The balance hasn’t quite been restored. We’ve been spoiled with lots of blue skies recently and I’m feeling the weight of the thick blanket of cloud this morning. I’m determined to have a clean slate kind of day. All the laundry away, beds made, throw the Dyson around, prep something delicious for dinner and set up some fun science experiments for the kids (cloud in a jar here).

Maybe then, there’s an element of authenticity in the art of sparking joy. For me, a clean and tidy house, everything in order and a productive day has the potential to feel as good as wandering into town to try on and buy a brand new pair of kicks. Maybe.

We’re going to be continuing lockdown for a while yet. The Coronavirus R value keeps fluctuating in our area and after 12 weeks of keeping the kids safe at home (with the odd little bike ride and family walk), I’m not about to stand in a queue to get into Primark. Hell no.

I’m sticking with plants, paints and science. How are you getting by? How are you sparking joy at home during lockdown?

 

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In The Fridge

Naomi dropped her backpack in the hall and wandered into the kitchen to see what was in the fridge.

Ben followed close behind, like a lap dog. It was plain to see he was besotted with her. 

“Don’t know why my mum keeps buying these DiaryLea lunchables, but I’ll keep eating them.” she offered Ben a plastic lunch pack with a smile. 

“Haha, probably because you can’t even make a Pot Noodle without burning the kitchen down.” Ben teased. 

“I’m not that bad! She rolled her eyes and sat up on the kitchen worktop to eat. 

“I well and truly messed that up. I’ve definitely failed.” Naomi closed her eyes and sighed. 

“Don’t say that you always think you’ve done worse than you have, you said that in the mocks and you did great.” Ben put a reassuring hand on her shoulder. 

“Great? I scraped a D, Ben. A D! The only place I’ll be going in September will be the Job Centre, most likely with my mum.” The panic began to rise again. Naomi jumped down and opened a can of Coke as a distraction. 

“Mum’s going to be so disappointed. She wanted me to get into the sixth form and follow Golden Balls to university. I’m going to be stuck stewarding at the game until I’m 65, like Jimmy Mac.” She fought back tears. 

“Hey, hey come on.” Ben put his arms around her shoulders. “Elle, it’s alright to not have it all worked out yet. Just because my predicted grades are good, it doesn’t mean I know which path I’m going to take.

“Just try and chill a bit. You can only do your best.” Ben gave her a winning smile. He was doing everything right. Being a shoulder to cry on, offering good advice, giving her space, not being too pushy. By the end of the term, they’d be an item. He was sure of it. 

“Urgh, anyway, I can’t change it now, can I?” Naomi wiped her eyes and dropped her packet into the kitchen bin. “Come on, kick your arse on MarioKart?”

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Poverty

The council meeting had lasted more than two hours and Ellie was losing the will to live.

She was convinced that half the councillors only attended to nod off on the backbenches, completely out of touch with what was happening on the streets. She was sure a couple had even begun snoring at one point. 

One councillor, newly elected, had made an interesting case about poverty in the local area. The former football training ground, which had originally been earmarked for development into a community hub, had been sold on and planning permission for yet more ‘trendy’ commuter style apartments had been approved.

With more and more families struggling to cope with the economic downturn, bus companies were pulling the services into the rural market towns and villages and so finding accessible work was becoming almost impossible. 

The market town had a decent high street and a twice-weekly market. Handsomely stocked by surrounding farms, crafters and entrepreneurs selling everything from name-brand bleach to kids wellies and bedding plants. Sainsburys, a freezer shop, the inevitable Costa Coffee, and tourist appeasing fish and chip shops kept the town afloat. 

Antiques, handmade crafts, clothes, books, charity shops, and a generations-old toy emporium made up the rest of the high street. Summer brought the tourists to the castle ruins and river, but winters were hard on everybody. Ellie listened as the councillor spoke at length about a family facing eviction. 

“This could be any one of us. This lady is a single parent. She works a 12 hour day, 6 days a week. She doesn’t earn enough to run a car and so without the bus links she’ll lose her job. She’s a lad at university and a daughter at the high school, they both work part-time around studying because they know the pressure she’s under. 

“She’s behind with the rent because she’s having to pay for taxis to and from work. She’s on gas and electricity meters and paying the highest tariff. 

“She is just one of literally hundreds of local residents crying out for help. We need to acknowledge the fact that this isn’t a sleepy market village anymore and help to provide better opportunities for our residents and the kids coming out of the high school” 

Ellie wanted to stand up and applaud. She was right. The paper was constantly receiving calls from local residents complaining about the lack of jobs, how crap the transport links were, and the fact there’s nowhere for the teens to go. 

The Mayor offered her sympathies and said there were no quick fixes, again, a tired phrase peddled by the council since Ellie left uni more than ten years ago.

She was one of the few who came back instead of chasing the dream of a weekly column on a red top in London. As she listened to the lukewarm promises to take a closer look at a potential community hub and links with employment agencies, Ellie wondered if she’d made the right decision after all?

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Compound

“Look, I’m just having a few money problems, okay? I will pay for the room, I swear.” The man leaned over the table towards the bored-looking copper. 

“Skipping the hotel is the least of your worries, mate.” The sergeant replied. 

“On arrest, you were found to have this envelope in your possession. It contained a number of photographs. Can you tell me what these are?” The officer fanned out the photographs of the compound across the table. 

“No comment” The man replied. “Any sign of my solicitor?” He knew his solicitor would do everything in his power to avoid having to deal with him, but it was worth a shot. Stalling the questioning process was his only option. At least until he got his story straight. 

Wishing he’d managed to sleep, he rubbed his hands over his face. 

“It would be a hell of a lot easier if you just answer the questions. Are they yours?” The officer pressed. 

“No comment.” The man replied. Just sit tight. He needed more time to think. 

“Alright, we’ll do it your way. Interview terminated at 13:07.” The officer gathered up the papers and left. 

The man held his head in his hands. They knew something. Tracing him down to the hotel so quickly proved that. The photos proved nothing, just a group of buildings. No easily identifiable signs, vehicles, or people. But it was guarded, the camera masts and secure gates and armed guards showed it was a place of interest. 

He could murder a coffee. Not the best turn of phrase, given his current situation. The door to the interview room opened abruptly and he was ushered back down into the custody cell. 

A cold, weak cup of coffee came through the door hatch an hour later with the news that his solicitor was en route. The man lay down on the thin, blue mat and closed his eyes. 

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