Caught in a (Mouse) Trap

 

Last week I just about brought you up to date – I didn’t give you the results of the MRI, because I haven’t had them yet. I can only imagine that if they were serious in any way, I would’ve been called into the hospital; I always have been before.  In the meantime, my next appointment isn’t ‘til December.  As I’ve said in previous posts, admin’s not the NHS’s strongest point.  If I do have any problems, though, I know I can just email or call my IBD nurse and I’ll be seen within a few days – no admin, you see; just a nurse with a proper understanding of Crohn’s Disease and an extraordinary commitment to what she does, and the patients she helps.  She’s like some kind of superwoman, and I can depend on her totally. At least I can for as long as the NHS realises how important she is and continues to employ her, but I shall resist repeating that rant this week.  The point is, we don’t need to worry about the MRI for now.

What I thought I’d do is take you into the past.  Make like Dr Who, only with a very linear selection of destinations and no tardis.  To give you an idea of just how hard I fought not to have the bag that I now cherish and with which I couldn’t be happier.  What treatments I tried in order to avoid having to undergo surgery.  Like many sufferers of  inflammatory/immunosuppressive chronic diseases, the default drug for me, for several years, was prednisolone – the king of all steroids.  Evil little bastard of a drug, but so effective in its way.  When it works, it works fast and efficiently, but boy does it give payback.  At the beginning it’s kind of amusing – when I first took it, I ate continuously for 8 hours one night, much to the delight of my then flatmates.  A decade or so later, I was on it for 7 years’ straight, then off and on for months at a time. I was lucky not to lose bone density, but I have had most of my teeth crumble and fall out, my hair is thin on my head, and thick everywhere else, which is not what any woman wants, and I have extra weight hanging around my body, thus negating the one benefit of Crohn’s I used to enjoy – a slim silhouette.  These days I’m more Reubens than Modigliani, though I don’t imagine either of them would be in any hurry to paint me.  And not just because they’re dead.

Once steroids and the various other anti-inflammatory options had been exhausted, new ones started to show up.  I tried something called thioguanine in a trial of 400 people with IBD.  One day I had a blood test result that filled my Consultant’s room with research doctors all looking stressed; it seemed I’d screwed up the whole thing by being the one patient whose liver function tests had come back abnormal.  It turned out to be cysts on my liver, which disappeared quickly enough when I stopped taking the drug.  And then, one day when I was beginning to despair of ever feeling well again, I was told about Infliximab (Remicade in the US). 

It was in the early 2000s, or at the turn of the Century as I like to call it, blocking out my generation’s vision of that as a time of empire, Boer war and the end of Queen Victoria’s reign (that’s the turn of the previous century), and replacing it with images of the internet, tiny mobile phones and disappointment that we still didn’t have jet packs.  And then there was Infliximab,  Which, rather hilariously, was partly made from mouse genes.  Yes, you read that right. I was to become part mouse.  A very tiny part, that probably wore off quite quickly, but you know – mouse genes.  Weird.

I was to get Infliximab by infusion – which is not in a nice cup of boiled water like a herbal tea, but through an iv in my arm over a period of 2-3 hours. It had only recently been approved in the UK as a Crohn’s treatment, so everyone was very excited, and I’m pretty sure I was one of the first of my Consultant’s patients to try it.  Lots of IBD patients use it now – these days it’s often given in combination with other powerful, toxic drugs that pretty much mean Crohn’s patients are having chemotherapy for their disease.  It seems to work.  Back then, my Consultant was very careful – he warned me that my immune system would be almost completely knocked out and that for a few days after each treatment I should pretty much hibernate.  My son was about 9 at the time and therefore, together with his friends, a veritable germ factory, probably carrying all manner of bacteria gathered each day at school.  We kept an antiseptic hand gel on the hall table that everybody had to use when they entered the house, and for those few days after each treatment, no other kids were allowed to visit.  If husband or son so much as sneezed they couldn’t come near me.  We took that warning very seriously.  Nowadays, I understand, such measures aren’t taken or even recommended, but this was a brave new world of putting mouse particles into human bodies and caution was the name of the game.

My first treatment was boring.  I lay on a bed in a day room, talking to the nurses when they had the time, listening to the psoriasis patients who were more experienced Infliximab users as they shared gruesome details with each other, grimly aware I was the only one there who had Inflammatory Bowel Disease.  The second time I took son’s iPod.

I had the treatment once every two months, and it would wipe me out every time; I’d spend the next 6 days unable to do anything, then suddenly I’d feel well.  Strong.  I’d get up and go out and about.  I took son to the Natural History Museum for the first time thanks to Infliximab.  It was such a huge deal that my Consultant wrote it in my notes.  It was a bit odd that son had to show me around (I hadn’t been there since my own childhood) but I can’t tell you what a joy it was as well – seeing the excitement on his face as he led me through a room full of pickled animal foetuses before skipping ahead, calling back directions to the rather impressive sight that was the (huge) blue whale.  I was very happy with this Infliximab treatment, if a little disappointed that I didn’t find myself constantly craving cheese.

During my 9^th treatment, I started to become breathless after about an hour.  By this time, I was having the infusions on a small day ward with me usually being the only one there.  I would get the sporadic attention of two nurses – one, the ward sister, was always there, together with one of a small pool of sweet, newly qualified nurses who were usually happy to chat, but not always terribly good at getting the iv in.  When I had the breathing reaction, the ward sister was super-efficient, turning off the iv, calling the Consultant, waiting for instructions about what to do next.  In the end, it was decided to give me some piriton and continue the infusion, only more slowly.  

On the 10th treatment, I got breathless again; this time much sooner.  I felt a bit odd with it too - light-headed, heavy chested.  The ward sister administered the anti-histamine again and stayed with me as it flooded my veins, making small talk about nothing very much.  This woman was an excellent nurse, but a tough nut to crack when it came to conversation.

And then came treatment number 11.  This time I was having the piriton from the beginning, alongside the Infliximab.  And something else had changed; the ward sister pulled up a seat next to me and started her usual meaningless chatter, but then she moved on to other subjects. More personal subjects.  I was about 12 minutes in to the infusion when she started to tell me – haltingly – about her difficult relationship with her mother.  I love it when people do that; open up and tell me stuff, and I was aware of how unusual it was for this particular person to be doing it.  Which is why, when at 15 minutes in I started to feel a whole new kind of reaction, I didn’t just come out and say so.  I felt it would be rude to interrupt her.  Sometimes, for  a mouthy Jewish chick, I can be too damned English for my own good.  It wasn’t until I felt as if a huge weight – a comic strip anvil was the only comparison I could think of – had just landed on my chest, that I broke into her conversation with a hoarsely whispered ‘something’s not right’ as I fought to keep breathing.  I have to say, her responses were lightning fast – she switched off the infusion, shouted something that resulted in two nurses being by my side in milliseconds, together with a crash cart; they were ripping my clothes open, sticking things on my chest, and actually charging paddles.  Really.  Like I was in an episode of ER with less attractive medical staff and no George Clooney.  It was hard to believe or understand that it was really happening, and at the same time all I could think was that I hadn’t hugged son hard enough or long enough that morning before he went to school.  How was he going to feel when he came home to find his mother was dead? He’d be so pissed off with me; I’d promised to take him to the zoo the following week.  And then suddenly I could breathe again.  The paddles were put back on the cart, having not been applied to my chest and everyone started to relax a bit.

The Consultant came to see me and I texted husband a not very reassuring message saying things had gone a bit wrong.  I then sent him another one telling him I was ok.  He’d gone into town, having dropped me off and knowing I’d be several hours, but made his way back to the hospital pretty quickly.  In the meantime, the ward sister filled in a yellow form, while the Consultant sat on my bed and told me I could no longer have Infliximab.  That he would do some research and try to find a way of getting me something else instead.  There was a new treatment in the US, he said, that hadn’t yet been approved for IBD in the UK, but he’d see what he could do. 

‘There is always the other option,’ he reminded me, as he did every couple of years.

‘Forget that,’ I told him, as I always did. ‘I’m not having a bag.’  I was a belligerent, wilful brat of a person back then.  And I would stay that way for another 10 years. Only then becoming the warm, fuzzy, chilled-out sweetie-pie you know me as now.

Shock Treatment

My flare-up was over, but there was still the MRI to get through.  I decided I might as well have it, as it would tell us if there was anything going on that I should be worried about.  Not that I particularly wanted to worry about anything, but I liked the idea of finding out I didn’t need to. If you see what I mean.

The day came.  I wasn’t in pain any more.  I wasn’t in the mood for schlepping to the hospital, drinking something horrible and hanging around for several hours either, but it had to be done.  Husband drove me there, and went off to wander around Paddington for about the thousandth time since we first met. (He wants you to know there's fuck-all to do in Paddington, though the coffee buying options have improved slightly since 1988.)

I went to the wrong unit, of course – I went to MRI/Acute Imaging, down in the dark bowels of the old part of the hospital, when I should have gone to MRI which was at street level, with floor to ceiling windows (the reception bit, that is – not the MRI room).  When I got there, they were indeed expecting me. There was one other person waiting – a young woman – and I smiled at her as I sat down.  A nurse came out and told us both we were going to have to drink a litre and a half of water containing something called Mannitol, which was supposed to make the bowel easier to photograph.  I’d had it before and knew it to be almost disgusting. It kind of tricks you, in that it tastes like ordinary water and just as you’re thinking, ‘ooh, that’s fine’, the sickly aftertaste hits and you realise it isn’t fine at all.  It’s quite a long way from fine; it’s actually quite revolting. I smiled sweetly at the worried looking young woman and told her it was fine. I did tell the nurse I had a bag, and wondered if that maybe affected how much I would have to drink, what with having no colon and all.  She agreed that I would probably need to drink less, and I tried not to look too smug as I encouraged the worried young woman to drink up.  We started to chat as we sipped, and she turned out to be Portuguese.  She’d recently started having bowel issues and this test was supposed to tell her if she had Crohn’s or Ulcerative Colitis.  She was clearly scared, and I tried to be positive, telling her how Crohn’s could be quite benign if she was lucky, and that I was unusual in having ended up with a bag.  I didn’t want her to be frightened, and I reassured her that I’d lived with Crohn’s for 28 years before having said bag, and that anyway my life was so much better now I had it. I wanted her to feel safe; not to be so frightened. She was young, with two small children, and seemed very sweet.  At first.

She told me about her kids, her husband, how she’d moved from Portugal because her husband had been offered a better job here in the UK.  She kept interrupting herself, giving in to her fears of bowel disease, and I kept trying to make her feel better. At one point, I was waxing lyrical about the value of a good GP, stating that mine is excellent, and she looked undecided for just a split second, before telling me that her GP was useless and clearly didn’t care about her.  ‘She’s ….’ She said.  I didn’t catch the second word, because she said it under her breath, almost whispered it.  I leaned in closer and asked, ‘She’s what?’  This time, she was only slightly louder.  ‘She’s Indian.’ 

What do you do?  What do you say?  She was scared for her health, and about to undergo a procedure she knew little of, which also frightened her, but really … how could I let that go?  ‘I don’t see why that would be relevant,’ I said, after a very long pause during which I had to try to work out how I wanted to handle this. ‘My doctor’s Asian and she’s absolutely brilliant.’  You’d think that would be enough wouldn’t you?  Enough to make it clear that I didn’t share her opinion and that she should perhaps move on.  Apparently not.  ‘She’s fine with people like herself,’ She continued, ‘But if you’re white, she’s not interested.’ 

I couldn’t get into a fight with her; what would the (white) receptionist think? He was alone out here with just the two of us.  Anyway, I knew from experience that I was no more likely to change her mind than she was mine (I’ve met an extraordinary variety of bigots over many years of hospital internments).  But a plan did occur to me.  All that reassurance about Crohn’s I was doing – it was time to change tack.  ‘The bag leaks sometimes,’ I told her, ‘It can happen any time, anywhere … so embarrassing.’ And I moved my hand under my top, as if making sure it wasn’t leaking now (of course it wasn’t).  ‘There are some pretty debilitating drugs they’ll probably try you on,’ I added. ‘You know, as a first port of call – steroids for instance ..’ And I told her about all the side effects of steroids – the puffiness, the weight gain, the thinning of the bones, the hair loss and – contrarily – the hair growth in areas a woman doesn’t need any hair growth.  The crumbling teeth and inflamed gums … the mood swings and the constant hunger … By the time I was called in for my MRI, the Portuguese racist was looking terrified.  And I didn’t mind a bit.  It wasn’t like I’d lied to her; I’d just decided to go with the negatives.  And I’d let her off quite lightly really – I hadn’t talked to her about the endlessness of chronic disease; the days of exhaustion and misery; the frustration of invisible illness, where nobody can see you’re sick so they find it hard to accept that you are.  I didn’t even get started on Atos and benefits.  But I’d done enough; I was satisfied. 

I’d forgotten how enclosed the MRI machine was.  How they tuck you into it, like a parcel in a package that’s a tad too small.  I remembered the noise – the incessant banging, the cause of which I’ve never quite understood.  It’s so loud.  They usually offer you headphones with music, but the only time I tried that, I could still hear the banging, which was kind of worse.  This time, the headphones were so that they could tell me what to do – breathe in, hold it for 15 seconds, that kind of thing. The nurses in there were lovely, and – bizarrely – all white with blonde hair.  I grimly thought to myself that Ms Portugal would be happy with that.  In the machine, I tried to find a Zen place to put my brain; I noticed a digital screen with my information on it above me – my weight, my date of birth, hospital number.  That was new.  I tried to find the capsule womb like; the colour was wrong, but I managed it.  I’m not generally claustrophobic, and I can cope with these things fairly easily. What I can be a bit neurotic about is my bag.  It was probably my own fault for bringing it up with Portugal woman, but I became convinced the bag was leaking.  There was a weighted cushion thing on top of it, and I was paranoid that it was forcing poo out from under the flange and onto my stomach; at times I was convinced I could feel warm poo dribbling down my belly.  I didn’t mention it, because I was too busy holding my breath and trying to imagine I was in a womb, but it was winding me up no end.  After a while, they told me a doctor would be in to give me an injection of Buscopan, which is an anti-spasmodic.  It’s an anti-spasmodic you can buy over the counter; it’s advertised on television, so why I needed a doctor to inject it I don’t know.  Of course we had to wait for said doctor and when he arrived, I couldn’t see him, but the nurse said ‘Dr Bannerjee will inject you now’ and it was all I could do not to holler with glee at the thought of Portugal woman hearing that same sentence.  

A few more minutes back in the ‘womb’ and it was all over. They took the weighted cushion off of my bag, and I was relieved to find nothing had leaked out from anywhere.  As I lay there being unstrapped and subsequently helped down from the conveyor belt bit I’d been attached to, the screen above me changed from my details to Portugal woman’s.  The bitch weighed a full 10lb less than me.  Perhaps racism’s good for your weight? More likely, she did have Crohn’s.  I once went down to five and a half stone when I was very sick.  Luckily for her, the NHS treats everybody in this country.  Even racists.  Even racists from other countries.  Of course, all that is about to change, but it won’t be people’s views that exclude them from healthcare. It’ll be our finances.  Thank you so much Messrs Lansley, Hunt, Cameron and Clegg. 

Racists and the dissolution of the NHS aside, I was feeling awful.  I felt tired and ill, and I could still taste the disgusting drink I’d had to force down.  I wanted to be home and in bed.

On the way back to meet husband at the car, I passed a guy on the phone outside the main hospital entrance.  ‘He just went in for a routine surgery,’ he was saying, ‘then he got an infection and they had to amputate his leg.  He’s on a ventilator now, but it’s looking quite positive.’

I remembered then how lucky I am.  How lucky we all are as long as we have the NHS.  How very horrific our lives could become if the Tories’ plans to sell it off to Richard Branson keep on going, unchecked. 

Having said which, there are flaws with the current system – I’ve said it before – and the better thing for any government to do would be to fix those flaws, rather then sell them off and make them somebody else’s problem.  In my experience, a large percentage of those flaws come down to administration.  For instance, that MRI was on July 6^th.  I still haven’t had the results.  I wonder if the Portugal racist’s had hers.

No Appointment Required

It was mid May, my proctectomy surgery – the one where they took out my rectum, sewed up my anus, rendered me unable ever to fart again; I may have mentioned it before – had been back in October of last year, and the ileostomy had been the September before that.  I’d had a bag for close to 20 months, and yes, I realise I’m doing that parents with their first baby thing.  More than a year old, less than two I might say if I’d had several stomas, but I haven’t, I’ve had one, and at this point it was 20 months old and if you don’t include the aftermath of two fairly massive surgeries, I’d been healthy for all that time.  Which is why I was taken by surprise when, in mid May, very late one night/early the next morning, I was woken in cramping, crippling, I’d scream if I could but it would only wake up husband and teen and they’d be grumpy and worried kind of pain. Horrible, burning, shrieking, dagger through an open, festering wound type pain. Nasty, evil, hideously familiar pain.  It had only just started, and I didn’t want to jump to any conclusions, but this felt a lot like Crohn’s pain.

I knew having the bag wasn’t a cure.  Crohn’s can affect the entire digestive system from mouth to anus, but I’d had a lot of that removed by now.  No colon, no rectum, no working anus. I’d had Crohn’s in the ileum before now, and had the infected parts of it removed.  In fact, when I’d had the ileostomy operation originally, there was a bit of ileum stuck to a bit of my stomach in what’s called an adhesion, so the surgeon had had to cut that out before he made the ileostomy. I knew my Crohn’s wasn’t limited to the chunks of intestine that had been removed, but I had hoped…  I’d had nearly four years in bed before I’d agreed to have a bag (it takes a while for me to work out what’s the best way to go sometimes), and the whole of that time I’d been in various awful types of pain, all caused by Crohn’s.  And then I hadn’t.  I’d had a bag, which had made my life so much easier in so many ways, but the biggest of those was that I had no more pain.  I’d woken from that operation with post-surgical soreness, obviously, but no Crohn’s pain.  I’d hardly needed the morphine they were pumping into me; the post-op stuff was honestly so much less awful than the relentless Crohn’s agony I’d been living with for all that time.  People who saw me straight after that operation said my face had changed instantly; the grey pallor gone, the drawn, stricken look now absent. Not that anybody had told me I looked pasty and miserable when they came and hung out with me on the bed that was the centre of my existence for nearly four years.  And how I’d loved it, revelled in it – that new, liberating painlessness I’d had 20 months to grow used to.  And how I despised this new, and oh so recognisable agony that was gripping me and my gut in the dark night. 

I tried to get up, but found myself bent double and almost crawled to the bathroom to check on my bag; to see if I could find an obvious cause for the pain, something I could quickly remedy, and no, I don’t know what that would have been, but you have to understand the fear, the horror, the sheer terror at the possibility that the Crohn’s was back. 

By morning, I knew it was back.  It hadn’t subsided at all, and drinking my coffee hurt; eating my banana hurt. And it wasn’t just eating either – not eating hurt as well. Everything hurt. Lying still, sinking into a Pethidine haze was the only thing that helped, and that only helped a bit.  With the Pethidine working, I emailed my IBD nurse, telling her what was going on, and asking if I should see my GI Consultant.  Within an hour, she had written back with an appointment for the following week.  I allowed myself to hope that by that time, my own prescription to myself of total, profound rest would have seen it off.  I called my GP too, and she asked me to come in the next day.  I did, she gave me a prescription for more Pethidine (this was an emergency, and while regular readers will know I’d been off it for quite a while, there seemed no other option at this point), and palpated my tummy while I said ‘ouch’ a lot, confirming my own diagnosis of a Crohn’s flare-up.  Just a flare-up.  That’s what I was telling myself, that’s what we agreed was the best hope, that’s what I’d decided I was having.  A flare-up can last for anything from a few days to months on end. I was aiming for the ‘few days’ option.  Given that I now had no choice but to accept that I was actually having a flare-up.

Nine days later, I had my GI appointment, and the Crohn’s was still flaring angrily.  I’d done nothing but lie in bed – quite angry myself - getting up only for bag emptying and changing, peeing, and showering (not at the same time).  Other than that, I lay flat, my laptop next to me so I could do Twitter and Facebook and feel like I was at least connected to the world by something, even if it was just wifi.  Never underestimate the value of social media to the chronically ill; we can hang out with friends, make jokes and pretend to be ‘normal’, if we choose, campaign and rail against government, the media, and anybody else who winds us up when we need to, commune with other people suffering as we are when what we need is empathy from someone who ‘gets it’.  I get all of that from my laptop, lying in my bed. It’s bloody extraordinary when you think about it.  Tim Berners-Lee (no relation, sadly) is a true hero for getting it together and giving the internet to us for free.  Well, except for the ‘service providers’ who have found a way to charge us for it – I don’t imagine he expected that to be how it ended up, but it seems churlish to complain about it now. And I am meant to be telling you about my visit to the Consultant.

I adore my GI Consultant – I had an awful one before him (which I will do a post about at some point, because I don’t think you can overestimate the importance of a good Consultant when you have a chronic illness) so I’m always aware of how lucky I am to have such a great one.  He’s about my age, married with kids, and we talk about that stuff, as well as about Crohn’s.  And politics and the NHS. It’s tedious only to talk about illness when you see someone so often. This visit was very much about Crohn’s though, so again I allowed a medical professional to palpate my pain-ridden tummy while I tried not to gasp and make him feel bad for hurting me.  I’m not sure why I do that, but I doubt I’m the only one who does.  He agreed that I was having a flare-up and I told him my GP was concerned about what to give me for the pain.  He wrote me a prescription for more Pethidine for when my current supply was finished, said he wanted me to have an MRI and suggested I visit the pain clinic. 

I was dispatched with my MRI form to the radiology unit, which had moved since my last scan and was now situated in the bowels of the oldest part of the hospital.  There are labyrinthine tunnels down there, all signposted confusingly, if at all, and it took me ages to find it.  First of all, I stopped at the pharmacy, which was also in one of these windowless rat runs, and there I handed in my prescription for Pethidine, showing my card which proves I am entitled to free prescriptions – for the moment. The selling off of the NHS by our current, toxic government that wasn’t even elected, is one of the more frightening things to happen to our country in my lifetime, and I fear for how this will affect those of us with chronic disease who need regular multiple prescriptions.  If I had to pay for everything I need – bags and all their accoutrements, as well as the medications I am on just to get by  - husband and I would be in serious financial trouble.  Even more than we will be in when my DLA benefit is cut by Atos, as it surely will be.  But that aside, the pharmacist was very nice as he told me they didn’t have enough Pethidine to fill my prescription. I went to the radiology unit next – remember I am in terrible pain at this point; schlepping through endless corridors trying to look ‘normal’, instead of heeding what my body was screaming at me and bending double as I walked, despite having the full complement of painkillers on board – finally arriving at a closed door with ‘Radiology’ written above it. I had to press a button to get in, and wait for the receptionist to finish a call with a patient before I was finally able to hand over my request form.

‘I can’t take that,’ she told me. ‘The doctor should have put it through the internal mail; we’ve changed the system.’ I do love the NHS, but I also agree with those who think it can be improved. I don’t, however, see how selling it to Richard Branson will achieve that.  Anyway, she was nice this receptionist, and she took my form in the end, telling me not to do it this way next time.  As though it had been my choice.  I asked how long it would be before I got my appointment; that the doctor had hoped it would be within a week.  ‘Oh no, we’re running at 4-5 weeks at the moment.’ She told me.

In the end, I was in bed for 3 weeks in total, in agony. My pain clinic appointment came through for four months later (excellent work), but my original self-prescribed rest and Pethidine technique did work.  One day I felt better; I got up, I went for a coffee, the next day I did a bit of food shopping – ooh, my life was getting exciting now. Gradually, it became clear that I was on the mend; the flare-up was subsiding. The MRI did indeed come through for 5 weeks later – by the time I had it, the pain was completely gone.  If that’s what did it, I’d like that appointment more quickly next time.

Sweet Dreams

 

At the end of April, it was my sister-in-law’s birthday.  One of those big birthdays with a zero on the end, that people feel honour-bound to celebrate loudly and with huge gestures.  I’m sure she wouldn’t thank me for telling you what exact number preceded the zero, so I shan’t, but suffice it to say she and my sister, to whom she is married, were throwing a lavish party, and of course we wanted to go.  More than that, we were going to go.  No matter how I felt that week.  To ensure that how I felt that week was well enough to go to a party in rural East Sussex, I spent the bulk of my time resting.  The party was on the Saturday, so Monday to Friday, I was in bed.  Without pethidine.  I watched a lot of telly and read two books.

Usually, when we go to East Sussex, we stay with my sister and her wife at their house, but not this time.  This time, as it was my sister-in-law’s birthday party, she had her side of the family staying in the house, and we were very generously offered a nearby B&B, which they had paid for and which was just ‘up the road’ from the house – more on that later.  We accepted of course, my sister having assured us that she’d been there, met the owners, and found it all more than satisfactory.  My sister has high standards.  When I took her advice about which hotel to book on a trip to Barcelona the previous year we’d ended up in one of the poshest hotels I have ever stayed in.  Will ever stay in.  I was confident that if my sister found the B&B ‘satisfactory’, it was likely to be bloody marvellous.

When the Saturday came, we started our journey southwards through driving rain and threatening storms – it wasn’t a good omen.  Then my sister called to tell us that the owners of the B&B were going to be out from 6pm – which seemed an odd way to run a B&B to us: Guests will be arriving after 6, owners will be leaving house empty just before then. This, however, was what they’d done, and to prove they weren’t totally careless, they’d  planned to drop off the keys with my sister and her wife for us to collect.  It was fine for us, we were perfectly happy going to my sister’s first, but it wouldn’t make me recommend this particular B&B to anybody else.  Another couple we knew were also going to be staying at said B&B, and we all met at the house first to pick up the keys.   Only arrangements had changed by the time we got there, and we were now going to get the keys at the B&B itself – they were under (and I kid you not) a wicker man which was outside the main door.  A wicker man.  We’ve all seen the film.  This did not bode well.  We laughed nervously about it before getting into both cars and heading ‘up the road’.  Luckily it was still raining, so nobody suggested we do the ‘short walk’, because ‘up the road’ in the country clearly means something quite different from what ‘up the road’ means in the city.  It was about an 8 minute drive, up a very steep hill, then down a very long, very empty drive to the deserted, and yes, somewhat sinister looking old farmhouse where we were going to stay. 

The wicker man under which the key nestled turned out to be just under a foot tall, but no less spooky for that. It was a weird thing; the five of us were at a loss as to why anybody would ever have bought such an item, let alone had it as the first thing any guests would see of your B&B.  Teen pronounced himself completely freaked out and asked that we please get changed and leave immediately.  The other couple went upstairs to their room, while we took a look at the accommodation that had been reserved for us.  Our room had its own en-suite bathroom – kind of a necessity for me – and two single beds that would have taken quite some effort to push together, so we didn’t.  Husband and I would sleep with half a room and a couple of items of twee furniture between us.  My sister’s standards were clearly slipping.  Teen’s room had a huge window that looked out onto what looked like wasteland. ‘Just the kind of place a serial killer would lurk’, he pointed out.  His bathroom was down the hall.  He reiterated his request that we please all get changed and GO. 

We left in our car – as the only non-drinker amongst us, I was to be the designated driver.  I sat on my pressure cushion, with husband beside me, and the others in the back of the car, while teen regaled us all with his serial killer theory.  I suggested that none of us really knew what had happened to the owners, which obviously helped any sense of paranoia my only child was developing.

The party was a lovely thing.  I didn’t need to take my pressure cushion as my sister and her wife have lots of sumptuously soft chairs, and I happily made my way between them, mingling and chatting with the various guests.  Teen spent much of the night charming my sister-in-law’s 84 year old mother, as he often does, and before we knew it, it was time to go.  Back to the Crowhaven Farm (look it up – it’s a film that haunted my childhood and vestiges of that terror will remain forever imprinted on my brain, unchanged by more than 10 general anaesthetics and plenty of mind-altering drugs in the intervening years) of B&Bs.  As we got back in the car, the wind was loud, the rain was falling in sheets, and lightning crackled ominously, heralding the loudest thunder we’d ever heard.  ‘This is quite scary’, said one half of the couple. ‘It’s apocalyptic’, declared teen, deadpan.  We all giggled nervously and then talked loudly about how we couldn’t possibly have walked to the B&B, and imagine how exhausted we would’ve been.

The weather really didn’t help; as we arrived at the house of horror the wicker man looked more disturbing than amusing, and none of us met its gaze as we hurried past, husband wrestling with the key in the lock to get us in.  The other couple laughed awkwardly as they headed off upstairs, reminding us that they’d be leaving early – long before we awoke.  Were the owners there now, asleep upstairs, or had they not returned; caught instead by the serial killer who surely lay in wait somewhere nearby? That question was answered by a note we found, telling us to turn out all the lights – ALL the lights?! – and to be in the kitchen by 7.45am if we wanted breakfast.  It was already after 2, there was no way we were going to breakfast before 7.45.  Husband wrote a note saying thanks, but no thanks, and we headed into our respective rooms.  Within seconds, teen was banging on our door urgently.  ‘There’s no wifi,’ he told us, ‘What kind of a place has no wifi in 2012?’ I gave him my computer; it had some films downloaded on it, and as he clearly wasn’t going to sleep, he could at least watch them.  I went into his room with him and he told me to be quiet and listen.  The sounds from outside were truly terrible.  A perfect soundtrack for a slasher movie. He pulled back the curtain to reveal that in the dark, the area where the serial killer would obviously hang out looked far worse than earlier.  Like it was probably hiding several murderers of all kinds of persuasion.  I offered to hang out with him for a bit, but he’s too grown up to allow that, so back to our room I went.  To my single bed.

Husband grumpily pointed out that whilst the room had a kettle in it, it had nothing else.  He was right.  There was no coffee, no tea, and no cups – just a kettle.  And a couple of glasses.  Fortunately, we’d brought a 2 litre bottle filled with lime cordial, so at least I could take my pills without having to drink water from the bathroom tap.  Who knew if that was drinkable?  Husband asked if I’d turned the lights out in the hallway when I came back in. Of course I hadn’t.  There was no way we were turning off those lights.  Or the lights in the bedroom.  I wanted to see my murderer’s face.

We slept ok eventually.  Well, I slept eventually; husband is very good at sleeping anywhere, and he was off in the land of dreams within minutes of complaining about the kettle. I opened my book, uncomfortable in the synthetic sheets, trying not to think about being slaughtered as I read the novel about a serial killer that I’d stupidly brought with me.  In the morning, I touched my stomach, only to find my bag had leaked.  In this horrible, chintzy room, in this nasty, cheap bedding, I’d spilled poo.  I’d slept on my back so it wasn’t on the mattress, but when I threw the kapok filled duvet back, the cover and – we subsequently discovered – the duvet itself had both been spattered.

Mortified, I showered and changed my bag, whilst husband found that the kettle had a purpose after all.  He boiled it and cleaned up the bedding.  The cover came clean, but the duvet looked like we’d spilled a drop of tea on it.  Oh well – if they’d provided any, they could’ve assumed that’s what it was.

We then realised neither of us had checked to see if teen was still alive.  I stuffed my soiled pyjamas and underwear into a plastic bag, got dressed and tentatively made my way next door.  The door was locked, and I had to knock for a while, fear rising from what’s left of my gut, with each bang on the door.  In the end, teen opened it.  He’d been asleep.  Because he’s a teenager.  A living, breathing teenager, who despite all expectations to the contrary, had not been murdered in his bed.  So in the end, the only dodgy person in this scenario turned out to be me.  And I do like to think they’re still wondering about that stain.