disposablepyjamas

There had been a hissing sound in my room since being admitted but feeling like the brown stuff leaking out of the vent above the window looked, I couldn’t generate enough interest to investigate. However, some hours later my temperature had plummeted to a pathetic 103c and the hissing remained. So with bravery and dramatic gusto, I reached for the call button. For the patient, this little button is a huge reassurance; it is a lifeline to the healthcare professional who I know that once alerted, will come quickened with haste to my side, should I be having a Stroke or more urgently, need a little packet of 2 digestive biscuits; 20 minutes later, the nurse came in.

‘YES? What is it?’. This does not convey the unprecedented levels of annoyance in his voice.

‘Err, there’s a hissing noise coming from that valve’. With a monumental look of disinterested irritation, he stared at the valve before wiggling it, much in the way a plumber might do so prior to announcing ‘it’s going to cost 4 grand’.

‘It’s only oxygen’ he said angrily.

‘Oh that’s a relief’ I said, adding “I could do with some more of that” which is the sort of pathetic attempt at a joke you make in the hope your attacker will pity you and not throw something heavy: in this case, it would have been a small box of latex examination gloves – not fatal but those cardboard corners can jab.

‘I’ll call maintenance’.

‘Oh I assumed you were Head of Maintenance, the expert way you jiggled it’. Nothing. Flat-line. Not even a forced grimace. Just a tiny fraction of a muscle twitch, like a little distant flare to the white rage of explosive hate erupting inside.

‘No. I’m Steve. I’ve been on duty for 11 and a bit hours of my 12 hour shift. I’ve been pooed on, puked on, shouted at, laughed at, pushed one way, pulled another, I’ve spilt urine on my shoes, banged my knee on a wheelchair, dropped my lanyard into a bedpan, stuck a needle in my thumb and I forgot to call my Gran; it’s her birthday’.

‘Oh, how old is she?’ I asked, rubbing my transplant scar, trying to look small and defenceless. Shaking his head a little in disgust, he turned to leave. I said ‘Look, forget about the gas, I’m sure it’s OK. I’ll just smoke in the other corner’. Suddenly, Steve was back in the room, frowning dramatically and pointing a shaky finger at me.

‘Don’t even joke about that. Seriously, it’s not funny, entirely not funny’. I looked at him with alarm and he continued, almost in the style of an educational video ‘You see, Oxygen is flammable. Highly inflammable. One little spark and…’ he put his hands together and making a little explosion sound, threw them open. Pausing for dramatic effect, he then whispered ‘Kabloomy’ adding ‘AND it’s bad for you’ as if being at the centre of a raging gas fuelled fire wouldn’t in itself be bad for you. I nodded and asked ‘Kabloomy?’.

‘Yes. It’s bigger than Kaboom. Much bigger’. He looked at me for a moment and then started shaking his head again in disbelief at something. He then bellowed ‘DON’T DO IT! Smoking really is bad for you, you shouldn’t do it in here, over there or anywhere! Ever! Idiots smoke!’.

‘Actually, I don’t smoke, I was just joking”.

‘There’s nothing funny about smoking’ he said with dramatic gravitas. I nodded but then thinking I should actually be shaking my head, I did that instead. I did not want to do or say anything else that might enrage angry Steve. Still shaking his head, he left.

A fascinatingly dull few hours later, I pulled myself out of bed to shuffle along the ward in the hope of seeing some patients who looked worse off than me. Reassuringly, there were two. On my way back to the room, I looked out of the window and saw Steve, sitting outside on a grubby plastic chair, drawing deeply on a cigarette.

Hospital stays can be boring and there are only so many programmes about house-hunting you can watch, detailing mundane couples searching for mundane houses in mundane parts of the country. Thankfully, today I had to leave half way through Tom and Rachel’s search for a disappointing 3 bed semi in Slough as I embarked on a tedium-busting adventure. I had been asked to join a diabetes study – I am not diabetic, yet – to consider the possibility of predicting the illness in transplant patients. So ordering ‘pasta carbonara’ to coincide with my lunchtime return, I was wheeled out of my room, down a long corridor to a part of the hospital I have luckily never before had to visit. With my wheelchair parked in the waiting room and safely ‘braked’, thanks to my catheter tube being caught in one of the wheels, I looked at my fellow sickos. On one side, a man was reading a thin paperback called ‘Understanding Death’. On the other side, a woman was quietly weeping. It was all very jolly. But I didn’t have to wait long and I was soon wheeled into a side room to begin the study. Looking a little like a vet’s surgery, there were various horse sized syringes on a table by the bed, along with complicated breathing apparatus and a large, plastic dome with a tube running to it. I wondered why I had ever agreed to whatever was going to happen in here but all my concerns went away when I was told there would also be Lucozade. I love Lucozade. The glow-in-the-dark drink has brought me back from the brink of dehydration on many occasion and has possibly single-handedly been the one product keeping me alive. It is of course just water and sugar but as we now know thanks to frantic media coverage, sugar is a new wonder-drug and none of us are eating enough of it. Another similar miracle product is Coca-Cola, a healthy, daily remedy for a wide-range of ailments and the first successful cure for teeth.
With cannulas in my arm – secured flexible needles, allowing for frequent blood out or drugs in – the trial began; blood samples drawn every 5 minutes, followed by quick blows into a bag and blood sugar tests.

Blood Blobs

After the first 10 minutes, my favourite radioactive fizzy drink was presented to me and as the doctor turned away, I gulped it down with bear-like ferocity. She then told me to just take small sips. Oh. She looked at me with a sort of ‘fuck it, nobody reads these study reports anyway’ sort of look and carried on. Four fascinating hours later, we were done and all that remained was to put the egg-like hood over my head for 23 minutes and drape the plastic sheet over my body. The Doc explained that it was imperative that I didn’t fall asleep, so that accurate C02 levels could be recorded. Around 10 seconds later, I was asleep. Prodded awake, I denied drifting off, explaining that the snoring noise was just how I breathe when wearing a large plastic dome. The cycle of sleep, prod, denial continued for the next 23 minutes.
On arriving back on the ward, I was delighted to see my lunch had been delivered, a whole 2 hours earlier. My possibly once borderline carbonara had bonded like construction material and when I tried to pick some up, the whole cold, starchy disc came off the plate together and balanced solidly on the top of the fork. Disappointed, I turned my thoughts to happier times, back in the dome. And fell asleep again.

The sharp aftermath

You hand over lots of things when you’re admitted to hospital, mostly metaphorically but sometimes physically too; my consultant has the exact same gold ring that disappeared from my room while I was having a biopsy. She swears it’s hers and proves it often by reciting the heart-warming inscription to her on the inside, written all those years ago by my parents.
Most patients try admirably to hold onto their dignity but it’s a challenge to do so. NHS staff are mostly very good at stepping back from awkward situations to allow the patient a little privacy. Sometimes, it’s the simple act of knocking before entering the patient’s room or perhaps saying “Mr. Smith?” before pulling back the curtain, allowing Mr. Smith to respond “I’m having a poo in here”. Mr. Smith has no doubt been in hospital a long time and life goes on. And the more time you spend in hospital, no matter how horrible everything is – especially that creeping red stain at the bottom of my curtain, that divides me from ‘the coughing man’- you become normalised by your surroundings and experiences and your dignity sets sail in a blanket covered in your own faeces that leaked out during the night. And no, I’m not Mr. Smith…or am I? Actually, am I? I don’t know any more, I’m on a lot of drugs.
Take for instance urine and the need in many cases for it to be weighed, measured, spun, sniffed, dipped, observed and discarded. Nurses do this to my piss every day; they also have other interests, like smoking and casual sex with their colleagues. To facilitate said actions with my urine, they provide waterproof, to a point, disposable – thank God, imagine putting your willy in a hole some other man’s willy has already been; horrible – cardboard bottles with optimistic circumference openings. They do offer even bigger ones, should Burt Reynolds be admitted but I’m quite happy with the ones from the children’s ward thank you.
My first time in hospital, I took my bottle somewhat sheepishly from the attractive nurse, blushing a little as I carried it into the bathroom, knowing she was thinking how I’d be sticking my thing into it. She wasn’t of course, she was wondering when her next smoke would be and what next to choose from the giant Quality Street tin on the desk, with the card saying “Thanks everyone for making my stay so easy and do you know what….in the end it DID fall off”.
Diligently filling it – although not quite, it is 500ml – I left it on the side and nervously pressed the bell.
“Hello. Are you OK?” the nurse asked, flicking her hair which made the impressive collection of pens in her top pocket dance exotically.
“Er, the bottle is in there”. I pointed towards the bathroom as if I was identifying a pervert in a line-up and turned away, horrified that she would soon be carrying a vessel of my warm void in her hands. Thank God she was wearing gloves too because I’d dribbled a bit down the side.
From there, my concern went steadily downhill; first I wasn’t doing it in the bathroom, then I didn’t bother closing the door. And then, three days ago, dignity had well and truly left the building, with its pants around its ankles. I had the bottle in hand and was about to let rip when there was a knock on the open door. I wasn’t aborting now, I’d got this far.
“Oh I’m sorry” she said, as she came into the room.
“No, no I’m just finishing”. I hadn’t even started.
“Oh OK, if you’re sure. I’m from Pharmacy, I just need to speak with you about your Tacrolimus, it’s changed. Is now OK?”
“Sure, I’m clear all day” I said smiling, which was light-hearted but did nothing to detract from the fact I still had my penis in a cardboard bottle.
“Oh well it’s the same dose but now once…” she stopped. As regardless of the short drop into cardboard, she could clearly hear the unmistakable sound of peeing; the mission was on; there was nothing remotely military about the act, I was simply peeing into a bottle but I’d watched The Cockleshell Heroes the night before and it had struck a chord.
“I’m going to come back” she said.
“Really? Sorry. But I have nearly finished”.
“Yeah, I’ll come back”.
“But I really have finished now” I said as the door softly closed.
I wondered whether that had been awkward and decided it hadn’t, which confirmed that dignity had indeed passed away, somewhere between keeping my penis in a cardboard bottle – not separately from my body of course, although that would be some mantelpiece ornament – when a stranger was in the room and choosing to continue peeing into the bottle regardless.

I had a re-enactment picture to post, to give you an idea of the incident from the pharmacists’ point of view. But I’ve lost my nerve. Instead you just get the line that would have followed the picture…

“Forget the Hot Dogs darling, we’re having takeaway tonight…”

My mother-in-law died on Sunday.  She was 67 years old. She didn’t smoke and only occasionally drank a small glass of wine. She was fit, active and healthy, spending a lot of time tending to her large garden and the many vegetables she grew. But Cancer doesn’t spare people who live healthy lives and once it took hold, her deterioration was terrifying. She was a strong woman, which gave her strength of fight and the possibility of a long battle with the disease, which while positive at the beginning, made seeing her steady and predictable decline towards the end all the more harrowing.

It had started in the same way that it starts for many of the 55,000 people diagnosed with breast cancer in the UK, every year; a lump in the breast. The immediate panic, peppered with occasional moments of weak self-assurance that in all likelihood, it’s just a benign growth, a cyst. Thankfully, that was the case. But during the scan, suspicious cells were found in the other breast that warranted further investigation.  It was a tumour. But although a particularly aggressive form of the disease, it had been discovered at a very early stage and with surgery and treatment, her chances were good.

The Lumpectomy went ahead and she was offered Chemotherapy or Radiotherapy. She chose the latter, as the consultant had suggested that due to the quick diagnoses and surgery, Radiotherapy, the less severe treatment of the two, could be effective. It also meant that risk of infection was lessened during treatment, so she could continue to see and spend time with her two young grandchildren, my two sons.  But choosing the less aggressive treatment came with a risk; if it wasn’t enough to cure the disease, a subsequent delayed start of the more potent chemotherapy may lead to the cancer spreading.

But Radiotherapy seemed to have worked and blood test results suggested that to be the case. She said she was incredibly ‘lucky’ and what began as a terrifying ordeal had come to the best possible conclusion. But unbelievably, no further scans were offered and after all the care, discussions, treatments, scans, results and final all-clear, she only received two consultations in the months that followed; she felt well and as far as the Oncology unit was concerned, that meant she was well. But this was Cancer and even remission doesn’t mean that the disease is cured. And a year later, when she started having stomach pains, an investigative scan revealed a dark ‘spot’ at the bottom of her lung. The Radiotherapy hadn’t in fact been successful; the cancer was still there, having just ‘retreated’. Follow-up scans at one, three or six months may have detected this but left unchecked and allowed steady growth, the cancer had spread to her lungs, bones and brain.

Her decision now was another difficult one and one that many cancer patients face; choose treatment with chemotherapy and hopefully extend life by a few months, albeit with terrible side-effects and minimal contact with my children or don’t have treatment, feel ‘better’ than she would on chemotherapy but have no hope of extended days.

Initially, she chose treatment. But as time went on, it became clear that it was too late. There was only one outcome now. And it was just a matter of time.

Brilliantly, even though the prognosis had suggested otherwise, she was with us for a family Christmas and was at the wedding of my marriage to her daughter a month later.

She died at home five weeks later, with her husband, son and daughter by her side.

She was a worthy adversary; she took my predictable son-in-law jibes and gave some back. We had a good relationship, not perfect – she was my mother-in-law after all – but she was kind, caring and extremely generous. My two boys have lost a grandmother who taught them how to sow seeds and look after plants; grow and pick apples and then turn them into juice; feed – and chase – chickens and collect their eggs. At five and two years old, they will not remember these things forever and although we will of course keep her memory alive, their memories of that time with ‘ArRa’ will fade.

And it is this that makes me most sad.

My wife has been incredible. Whilst carrying the immense grief of losing her mum to such a horrible disease, she has supported her father as he struggles to come to terms with the loss, taking each hour of each day as it comes. She is organising the many complications of the funeral arrangements, considerately balancing the wishes of her mum and the hopes and expectations of the family and all the while, caring for our two boys and continuing to work. On top of all this, she has me to worry about; this time next week I’ll be having the transplant.

You would think all this is too much for one person to carry but somehow she just does and gets it all done. She has incredible strength of character. And she is an incredible wife, mother and friend.

And her mum would be proud.

Assuming for a moment that my absence on here was noticed by – ooh, let’s be generous, two people – they may have interpreted it in many interesting ways; the most likely of which is that my broken, sagging body had finally been handed over to the military doctors, who were now rebuilding me using parts from a class 2 nuclear submarine and an Asda shopping trolley they found in the canal (I’ve always wanted wheels) to create a unstoppable Super Soldier and Shopping machine.
Sadly, this isn’t what happened. But it is what you dream about if your temperature is 102c and you fall asleep watching Van Damme films on Channel Five.
In truth, I’ve had some dark days and more are ahead. My recent blood tests have shown that all the things I want to be high are low and all the things that really need to stay down low, are high. There are some other things staying in the middle but they’re not mine, I’m just looking after them for a friend while his shed is built.
So over the next few weeks, these posts may become even more infrequent as I am either ‘prepped’ for dialysis or readied for transplant. Dialysis, you may already know, is a process where the blood is syphoned from the body, ‘cleaned’ in a machine and returned to the body, free from all the toxins and waste products that are building up because my lazy kidney can’t be bothered to do its own cleaning. As the level of toxins rise, the patient becomes increasingly lethargic, nauseous and dizzy and generally feels the same as the two-thirds of eviscerated pigeon looks, that’s stuck in the bush outside my window.

However, as my sister is still in the running for sharing her organs with her brother – and what could sound more natural and beautiful than that? – I may avoid dialysis altogether, along with the anticipated excitement of reading up-lifting NHS information leaflets about detrimental complications and long-term survival rates. I’d also avoid having a Fistula, a procedure required to facilitate dialysis, where a surgically modified blood vessel is created by connecting an artery to a vein. And in my opinion, that’s not so many steps away from grafting an Asda shopping trolley onto my body.

However, problems arise and transplanted organs can be rejected and of course, don’t ever last a lifetime. So ultimately, it is highly unlikely I’ll avoid dialysis forever and scary dark days will roll over me again. However, even when everything is at its bleakest and hope is entirely obscured, the smallest blink of sunshine can, just for a moment, stick its tongue out at the dark.
I needed to have a chest x-ray, to rule out an infection and was in the Radiology waiting room, with about 15 other people. It was silent; muffled coughs and an occasional whispered request for a tissue or a mint but that was pretty much it. The Radiology unit is in the same building as Oncology, so you never expect the mood to be party-like. Every day, people are given tragic, life-changing news in these rooms and as I sat down, a doctor was speaking to a woman in hushed tones about her unconfirmed scan results that needed further investigation. It all sounded pretty bleak.
An elderly chap, probably in his 80’s with an amazing beard and an immaculate tweed coat, shuffled his muddy green boots from reception to one of the chairs and sat down with a large sigh. After a couple of minutes, he slowly and shakily reached inside his coat pocket and pulled out a mobile. Putting on the thickest pair of glasses I’ve ever seen, he switched it on. Everything remained silent for another minute. And then, with an eruption of sound, he started playing a very loud game. Boing! Boing! ZaaaP! Boing! Boing! Boing! ZaaaP! I looked at him concentrating fiercely, as he fought heroically to position the falling coloured balls into the correct order and thought it was quite funny. But nobody else seemed to. They just kept flicking through antiquarian copies of National Geographic or looking at their feet. That was until I looked at the woman opposite me, who had spoken with the doctor and we exchanged a weak smile, before looking away. But then we caught each other’s glance again and both smiled before she looked at the man and his game and had to put her hand to her mouth to stifle a small laugh. But because everyone else was being so quiet, that just made me laugh a bit too, which led to her laughing more and me laughing even louder. Soon, we were both laughing uncontrollably and seeing everybody else still sitting silently, trying not to look at the crazy laughing people, made us laugh even harder and we just kept laughing, for what seemed like a very long time. It was a ridiculously funny moment.
And for that moment, she had forgotten her scan results and I had forgotten all about dialysis.

My dear friend Andi Reiss has generously offered to add some much needed visual appeal to this blog, in the way of cartoons. Andi is an all-round talented chap with credits for Producing, Writing, Directing, Filming and Drawing to name a few; I’ve no doubt that one day he’ll add ‘Donating’ to that list but for now, I’m happy with the cartoons.

Have a look at http://andireiss.wordpress.com/yellowmediaentertainment/ to see what I’m talking about…

It should be clarified that I am not in a private room in a private hospital on a private island. Somebody implied that I must be, due to the frequent references to my room and my bathroom and my alphabetised Nancy Drew Mysteries collection in my walnut bookcase. As suggested by the assorted stains, the various smells and the war-time issue blankets, I am actually a guest of the NHS. However, I am frequently located in one of the ‘side’ rooms, which while separate are still on the ward. These special rooms are normally reserved for visiting dignitaries, celebrities and Justin Bieber, assuming of course that they meet the exclusive criteria required for entry – violent diarrhoea and vomiting within the 48 hours prior to admission. And as I am frequently admitted with viral infections – thanks in part to my compromised immune system but mainly my interest in pretending to be a dog and crawling around public toilets (there’s a name for it, I forget) – I often present with the required explosive levels of poo and sick to be put into a room. This comes of course with much murmuring irritation from my fellow ill-folk, whose poo-and-sick-free status gets them a bed on the communal ward.
“Curse my fully functioning bottom and stomach!” they shout at 2am after being woken up yet again by all the belching, farting, moaning, crying and noisy-dying going on around them.
Still, I have paid my dues, having spent plenty of time on various wards, including Renal, Coronary, Infectious Diseases, High Risk and Children’s, the latter being odd as I was 37.
In fact, the first few years post-transplant were sadly entirely diarrhoea free and it was quite sometime before I was finally upgraded.
Depending on the hospital, the style of room varies. They can have electric beds, en-suite bathrooms, fully-operational blinds and windows that actually open. One I stayed in looked as if it had previously been a storeroom, whilst my last one still was; there was a stack of chairs in one corner and a box labelled Lost Property in another. Rummaging through it was fairly entertaining, right up until I picked up a grey wig for closer examination and pricked my finger on a vintage syringe lying underneath. I had wild dreams that night of dramatic news headlines – “Vintage Smallpox virus makes deadly comeback” – but it was only on BBC Points West so I didn’t take it very seriously.
The object that best defines the quality of the room is the television; some have new Freeview digital ones, whilst others have terrible pay-per-view ones where you have to spend £10.00 to watch Murder She Wrote. This current room’s one shares a remote control with the televisions in the other three rooms and we take turns to operate it. Having to watch other people’s daytime television choices is a real eye-opener to the general publics viewing habits. I could get out of bed and change it manually but its become imperative that I find out whether Shirley and Martin choose the studio in Malaga or the Fisherman’s cottage in Whitstable.

There is a risk with the indivdual side room; if it doesn’t receive a napalm level of hose-down, following the previous occupants departure (now happily at home with their family in the Home Counties or deceased) there is a good chance that you’ll ingest some sort of lingering airborne virus with claws and fangs and bad breath. Wearing an American football helmet and swinging a baseball bat at anything that buzzes past won’t help you either, as these virus things are pretty small. Some of them you can even balance on the palm of your hand. Imagine! So instead you should come armed with a jumbo dispenser of Hand Sanitiser – just pull one off the corridor wall before you go in – and the ability to hold your breath for the entire length of your stay.