A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Saturday, 30 July 2011

Walls have ears

I promised you some insight into my experience of the ward and I've written a piece about it.  It doesn't give the whole experiece, but it's entirely true and will hopefully show you some of the craziness of it, and why I was so desperate to get out of there.  Before I paste 'Walls Have Ears' in here I want to say that while the place was utterly loony, the general care I received was okay.  So anyway, here it is (with apologies for the formatting, but I can't seem to keep it the same as in a Word document):

Walls Have Ears

‘Harold? Harold! Are you under the bed? ... Get out from there. Come and get your fish, your chips, and your pudding. Or do you want sausage? ... Harold?’

It was supposedly a respiratory ward, but shut behind the curtains in the corner of this old-fashioned nightingale ward, I listened to those around me and it was evident that most of the other patients who lined the walls like shabby ornaments – relics of better times – were suffering from dementia.

‘Lemons! Nurse! We need lemons!’
I couldn’t imagine what purpose an elderly hospital patient would have for a lemon, let alone an urgency for them, unless of course Harold had emerged and required lemon with his fish. But there was little time to contemplate before I heard the next bizarre question.
‘Nurse, is it all right if I get into the wardrobe?’
After only a short pause, and with almost a tone of distraction as though the request was far from unusual, the nurse replied, ‘Yes lovey, that’s fine, except that you’re in hospital and you’ve left your wardrobe at home.’
‘Oh,’ responded the voice from a couple of beds down to my left, ‘Never mind. I’ll wait until I’m home.’
‘By the way, Jeanette, that was your daughter on the phone.’
‘Which one?’ asked the same voice as had wanted to get into the wardrobe.
‘The one in Scotland. She sends her love and says she’ll come down with the family next week.’
‘That’s Eileen. She’s my main daughter.’
Her main daughter? Did she have another, back-up daughter? How would it feel to know that you were only second or even third in line when it came to a hierarchy of daughters? Thankfully this wasn’t something I’d ever have to worry about as an only daughter, but in days of fragility and insecurity should I have thought about the possibility of back-up children I may well have worried about not being a main child.

The clamour continued, with telephones ringing incessantly, the nurse call bell hooting like a muffled fog horn, seemingly never answered, and a chorus of elderly ladies calling out the names of those I presumed were husbands, sons, mothers, daughters, fathers, friends.

‘Mark!’ It was the voice that had previous called out for Harold.
‘Dorothy, there isn’t anyone here called Mark.’
‘I know. Mark!’
‘If you know there’s no-one here called Mark then why are you shouting for him?’
‘Because I want him to come here,’ with which she must have pointed to the health care assistant.
‘But he’s not called Mark. He’s called David.’
‘I know he’s called David. Do you think I’m stupid? I’m not going to call him David, though. I’m calling him Mark.’
‘David’s a poncey name. I like Mark better ... Mark! Come here, Mark.’
With a quiver of laughter in his voice, David asked what Dorothy wanted.
‘I want you to come here. I want you to see that Harold gets out from under the bed, and I want you to tell that Alex that from now on I’ll be calling him Frank. Oh, and while you’re down seeing to Harold, ask him to start thinking about what we should call our twin boys.’
‘Your twin boys? You haven’t got any children, Dorothy.’
‘I know, but we might yet, and what if we have twins. We’ll need names. Boys names. They’re bound to be boys. Cecil, I think. Tell Harold, Cecil, or Sebastian. Or maybe Robert. Wait! No, tell Harold, Umberto. And also, get this bloody cat off me.’
‘Cat? There isn’t a cat.’
‘There is in my imagination. Get it off me! It’s biting me!’
‘Er, okay ... Come here, cat ... Leave Dorothy alone...’
‘Don’t just walk away, young man. Get the cat off me, and tell Harold to put Christopher on the list. Have you got that? Make sure you put Christopher on the list. And Philip. What about Henry? And Peter? No, don’t put Peter on the list. Oh, and while you’re getting Harold, tell him we’re definitely not having David. Go on now, Mark, bugger off with that cat and don’t let it have Harold’s fish. Mind, if I hear that he’s had Harold’s fish I’ll be coming to slap you round the arms and the legs for being a naughty boy. D’you hear me, Mark? Do you?’
A rather timid, ‘Yes,’ could just be heard over the holler from a nurse further down the ward proclaiming that bed nine had a sore bottom.
‘What was that?’ enquired the nurse tending to the patient in bed twenty, opposite me.
‘Bed nine. Edna. Sore bum.’
‘Bloody hell,’ I thought, ‘can nothing be private in this place?’ I felt sorry for Edna, not only because she obviously had a pressure sore that would be causing her pain, but also because the lack of privacy meant a lack of dignity. Dignity is hard enough to come by as a hospital in-patient without having it shouted down the open ward that you have a sore bottom.

When the doctor later came to see June in the bed next to me he asked her if she was moving her bowels as usual. Dorothy shouted out from across the ward, ‘Oh p-lease, doctor, do you have to? Some of us are trying to rest. We don’t want to hear about the woman’s toilet habits.’ I was warming to Dorothy and her spirited outbursts, and thought that while she obviously had some dementia, remnants of the feisty woman she’d obviously been were shining through unscathed.

Unable to do anything about the lack of privacy in this nightingale-style ward, the doctor had no choice but to continue his rounds as usual, so moving on to his next patient I heard him draw the curtains around another bed. We all then heard him tell Janet that the scan she’d had the previous day showed that she had cancer. There were options – either treat it with medication – chemotherapy – or leave it be. He couldn’t say how effective chemotherapy would be, but asked if it was something she might consider. He seemed to want an answer immediately, and sounded a little exasperated at Janet’s questions about what it all meant for her. She asked him to write it down so that she could look at it again when he’d gone and talk about it with her family when they visited later, ‘or else I’ll forget, doctor. I don’t remember things the way I used to, you know.’ I wondered if she’d later read the doctor’s scrawl informing her of her treatment options as if she were being told for the first time about her cancer diagnosis. How many times would she need reminding that she has cancer, and how hard would it hit her each time?

A rare moment of relative peace followed the ward’s collective learning of Janet’s cancer, but gentle muttering floated across the ward to my curtained bed area from eighty-three year old Doris in bed nineteen. I listened carefully to her quiet conversation with her absent daughter as she recounted happy days at home together and the ease with which her daughter had apparently taken to education.

It seemed that Doris was reflecting with her now grown-up child on a successful passage to adulthood, who appeared to have recently told her mother that she was getting married.
‘Don’t worry, my lovely, about money. Wealth won’t improve your education, or make you love your young man any more than you already do. Wealth won’t make you happier. Enjoy one another and you will have all the riches you need.’
A short pause in her musings during which I wondered if Doris were listening to the other half of this conversation – the imaginary presence of her daughter.
‘...The morning a girl wakes up, my lovely, and realises that she’s going to get married – they’re the happiest moments of her life. I wish you all the happiness in the world.’
A smile hung in the air, and I rested in its gentle warmth, eventually falling asleep.

I awoke with a start sometime later to find that the curtains had been pulled back from around my bed, and that Jeanette was about to sit on my face and use me as a toilet. Too surprised by the situation to react in a coherent manner, I was immensely grateful for June’s moment of lucidity and her shout from the bed beside me for the nurse, who came running from the nurses’ station in the centre of the ward.
‘Jeanette! Stop! Come on now, if you want the toilet let me walk you down there,’ and off the two of them went to the other end of the ward.

Dazed by my lucky escape from what would have been a truly horrendous happening, and still in the process of waking up from an exhausted slumber, I was only mildly bewildered by what I saw on the other side of the ward. Doris had stripped off and was doing naked press-ups against her bed, and the seventy-nine year old woman beside her had taken off her pyjama trousers and was weeing in the middle of the floor.
At this point an official-looking woman arrived on the ward with two others who were clearly being shown around the hospital.
‘This is one of the older wards. As you can see, not a lot has been done to update it yet, and it’s not clear how much will be done. You see the units on the walls? Well when they were being fitted it became apparent that the walls were crumbling. We’re not entirely sure how the units are staying attached to the walls, and to be honest, although we don’t know when it’ll happen, we expect the walls to fall down at some point.’

The hospital visitors glanced at the walls, glanced at their guide, and followed her out slowly nodding their heads.

I was incredulous that the hospital should still be using a ward that might crash to the ground without much warning, and decided that this was another very good reason to get out of there as soon as possible. If I didn’t, it seemed likely that I’d either be crushed by crumbling walls or driven mad by the senility by which I was surrounded. In the meantime I was going to request some ear-plugs so that I could at least be ignorant of all that I was not meant to hear.

Saturday, 23 July 2011

For one night only

I've been away.  I went for one night to Arnside in Cumbria with W.  The plan was to go away on the Friday, spend the night in the youth hostel, and on the Saturday go to South Lakes Animal Park to meet the giraffe that W sponsored for me for my birthday.  Although the weather wasn't great we had a lovely drive over Hartside Pass, stopping at the top to picnic in the cafe car park, taking in what we could see of the view over to the Lake District.  There's something about W and I that seems to curse the weather, and on almost all of our days out it buckets down with rain, and Friday 8th July was no different, but as ever, we weren't going to let it spoil our fun.  Onwards to Arnside.

We arrived at the youth hostel at around 3pm, but couldn't book in until 5pm when reception would be open again, so we went for a wander down the path from the hostel to the 'prommenade'.  The grandly named promenade that's actually little more than a small pavement, runs along the edge of the Morcambe Bay estuary with its fast-changing tides and sinking sands.  Needless to say, we didn't venture onto the sands, but followed the promenade to the shops on the waterfront, where W bought an ice-cream (actually it was 2, because she had to have one for me as well ;oP ), and I bought a bottle of Peroni for later on as we planned to come back down to the waterfront later to watch the sunset while we had a drink in celebration of W passing her graduate diploma.

Taking a bit of time to relax and get into holiday mode, albeit for only one night, we sat on a damp bench on the 'pier', getting increasingly wet ourselves as the rain clouds rolled in, and we heard thunder rattle off the mountains to the north.  After I'd finished nebulising, we decided that maybe it'd be best to go back to the youth hostel and wait inside for reception to re-open, so off we toddled.  But it wasn't quite as easy as that, because the path up from the promenade to the youth hostel is really quite steep, and my rubbish old lungs aren't that good at 'steep', so I had to take it slowly, and breathlessly, and getting wetter as the rain got heavier.  In the end we both made it up the hill, stumbled out of the rain and waited in the youth hostel kitchen for an hour when reception opened again.

It seemed rather ironic that two severe asthmatics should be allocated a youth hostel room right at the top of the building, but so it was.  However, we did appear to have the seven-bedded room to ourselves, and there were great views on two sides of the estuary, so after making up our beds we rested a while, enjoying the views and taking time to relax some more before dinner.

When we went down to make dinner I decided that I'd take things with me to do in the lounge afterwards so that I wouldn't have to climb all the stairs again.  So after dinner, W and I sat in the lounge chatting, drinking Peroni (although W had champagne), and doing cross-stitch, while it rained rods outside.  It looked as though our plans to watch the sunset by the waterfront weren't going to happen, but then sod it, we decided that we'd go down to the estuary anyway and watch the rain go down instead of the sun.

Back we went down that steep path from the rear of the youth hostel, and along the prom the other way this time, not that we could go very far before the path disappeared into the sand.  We saw a couple of herons flying over the sands a little further out, and one flying from the tree tops, and then we realised that the thunder was getting louder, the storms were getting closer, and perhaps it'd be best to go back and dry out.

The path back to the hostel was more of a challenge this time, I think in part because I was tired, and in part because of the muggy, thundery air.  It was a real struggle, and I had to stop several times whilst W soldiered on ahead.  I could feel my lungs tighten and knew that some serious nebulising was going to have to happen when we got back inside, and indeed, by the time we got into the youth hostel I was wheezing well and knew that I'd be stupid to try to climb the stairs to the dormitory before nebbing, so we went into the lounge instead.  Thankfully it was quiet. 

I'm more than used to using my nebuliser in public, and it doesn't bother me, but I can't say that I like an audience, especially if I'm feeling ill, which I was beginning to confess to myself that I did.  More than anything, though, the overwhelming feeling was one of being pissed off.  I had come away for one night of fun and relaxation, and celebration of W's graduate diploma, and to meet a giraffe.  How dare my lungs play up now.  I was going to neb them into submission.  At least, I was going to try to.

An hour and a bit later, with five nebules of salbutamol, 500mcg of ipratropium, and an extra 25mg prednisolone on top of the 60mg I'd already taken in the morning (my current maintenance dose), I was only very slightly better ... or perhaps that should be, only a little less bad.  I was struggling and I'd run out of options.  W asked if we should go to hospital.  Speaking only a word or two at a time, I replied something along the lines of, 'The problem is that I'm in no state to drive, you're not insured to drive my car, and we don't know where A&E is.'  Then W pointed out that the NHS have their own transport services, and I realised with an explosion of expletives in my head that I was obviously losing all ability to think clearly - a very bad sign - and that I was most likely not going to meet my giraffe, but instead end up in the back of an ambulance.

W went off to reception to get help.  The man sitting on the sofa in the window opposite told me he was a district nurse.  He said he was impressed with how I coped with my illness, without a flicker of panic, but my primary reaction being one of pissed off-ness.  W came back, closely followed by the First Responder Unit (FRU) paramedic, who W had already genned up with my medical history and the course of the evening's events.  The paramedic was lovely, but there was something unconventional about her.  I couldn't work out what it was.  I sat, breathing in her oxygen-driven nebuliser with a pulse oximeter on my finger, while she asked W to phone ambulance control to make sure an ambulance was on its way, when it struck me - although the FRU paramedic had on her shiny, hi-vis, paramedic jacket, underneath that she was wearing pyjamas!  This was rural ambulancing, and she'd obviously been tucked up in bed when the emergency call had come through.  Bless her.

It was only a matter of five minutes or so before the paramedics arrived with an ambulance, into which I was quickly bundled.  They tried to get a cannula in, but my veins are so buggered from all the cannulations over the years (hence my portacath, but you have to be trained to use it) that they didn't have any success.  Instead of IV hydrocortisone, I was given an IM dose instead and then whizzed at great speed on sirens and blue lights along the country roads, and down the M6 to Lancaster, where upon I found myself in the A&E department of the Royal Lancaster Infirmary (RLI).

The doctor I saw in A&E seemed rather scared, not terribly confident, but also reluctant to ask any seniors to get involved.  He did okay, overall, although didn't actually get me any better in the three hours I was under his care.  To be fair, though, he did take on board my treatment protocol from my consultant that I carry with me, and he started the aminophylline infusion before sending me off to the Medical Admissions Unit (MAU).

I have to say that I was impressed with how they dealt with me in MAU, and also with how they treated W.  I was seen quickly by the junior doctor, who soon realised that he was going to need advice from his senior so got the registrar (SpR).  The SpR was a lovely man - ever so gentle - who made sure that W was okay, and asked if she had any questions.  He also recognised that I know my disease better than they do, and that W also knows how things go for me with attacks too, so he regularly checked in with us to see how we thought things were going.  He was also quick to get ITU on the case, and they were quick to assess that I needed BiPAP and transfer to ITU.  I definitely wasn't going to meet my giraffe.

W had work the following day so had to get back to Gateshead.  This meant that she'd first have to find her way from Lancaster back to Arnside, where they youth hostel team would hopefully let her get some sleep before booking out and trying to find her way from Arnside to Newcastle, where she'd left her car outside my flat.  Loathed as she was to leave me, she had to, and it was only a little while after she left that I was transferred to ITU.

The care I received in ITU was great.  They were lovely.  They were on the ball.  The consultant (Dr W) who was on over the weekend happened not only to be an ITU consultant, but also a respiratory consultant, and he was fantastic.  He immediately liaised with my care team here in Newcastle, and I had absolute confidence that I was very capable hands.  I stayed on BiPAP for about thirty six hours, and in ITU for four days before I was well enough to be moved to the respiratory ward, but Dr W said that he was more than happy to keep me under his care whilst I was in the hospital, given how ill I had been and how complicated, difficult and brittle my asthma is.  I think this was something of a relief to the doctors on the resp ward.

I'll blog more about the resp ward in my next post, but I'll leave this here for now.

Monday, 4 July 2011


It's far, far too long since I blogged.  Apologies.  I had my first meeting with my PGCert portfolio supervisor so I've been spending some time writing, and a lot of time fretting that I haven't written enough.  In the end I sent my supervisor the miserly 1254 words I had written, and ended up getting some good comments, although I did promise to write considerably more by the time we next meet.  I'd better get to it though, as our next meeting is on 21st July, which is approaching far too quickly :o/

Now then, back in May I blogged about how I can't get into my local pharmacy because they have no disabled access.  They assured me that they'd finally been given planning permission for a temporary ramp, and I speculated on what a 'temporary ramp' might be.  Weeeeeeeeell, I went to the pharmacy on Friday, and was pleasantly surprised to see that they had at last had a doorbell fitted so that wheelchair users could now attract the attention of the shop keepers without having to rattle the letterbox while the door automatically closes on our faces.  After pressing the new doorbell, I wasn't entirely sure that it was working because I didn't hear any tell-tale ringing, but a minute or so later one of the assistants came to the door, and then asked if I would like the ramp!  Would I like the ramp?!  Of course I would like the ramp!  I would love not to feel like a second-class citizen waiting out on the street next to the dog that's been tied to the bollard whilst its owner has gone inside the shop.  It turns out that a temporary ramp is a foldy-uppy ramp that, although apparently heavy, can be put into place when needed and then stored away inside again. 

It was a real novelty to go inside the chemist shop.  While I was waiting for my prescription I had a little scoot around and looked at all the things I now had access to buy ... and then decided that there wasn't really anything that I particularly wanted to buy at that time.  At least I knew that for myself now.  How very pleasing  :o)

The ramp does look pretty heavy, and for some reason they keep it behind the counter at the far side of the shop.  I rather suspect that the pharmacists and shop assistants are going to get fed up with lugging it around all the time, and if this happens they might just push management for a permanent ramp.  Sooooo, my very basic plan is to go into the store as much as possible, which won't be difficult as I have to go there for my prescription very frequently, and they almost never have everything on my scripts, so I invariably have to go twice for each one.

Progress, definite progress, but my quest for equality of access isn't over yet.  I'll be back into Boots tomorrow for the rest of today's prescription, so I hope the pharmacists and shop assistants have had spinach for dinner tonight ;o)