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Journal

The Trials

Added: 23-2-2007

As part of a desperately-needed remuneration process during our mid-walk break, I decided some time ago to take part in a clinical trial, a hospital stay testing pharmaceutical drugs. Not, perhaps, a career highlight but, in my current position, the prospect of earning 2000 pounds ($4kish) in a little more then a couple of weeks with plenty of time to read and write suits me perfectly. After a few near misses I managed to land myself a 17 day trial testing the effect of an antibiotic on the heart. If I am chosen to stay for the duration of the trial, I will be hospitalized for the entire time.

In a bid to share the burden of my boredom I have decided to keep a journal of this time in the clinic.

Day 1 (Selection Day) Wednesday, February 7th

For the last week I had been down in Brighton decorating and repairing my flat before new tenants move in. After the trial I will be returning to the Midlands (via Copenhagen?) This means that I have a huge amount of luggage with me, containing very little that I might need.

I arrived this morning breathless after first train, then tram, then bus had got me to the hospital. Most people arrived with nice neat pull-behind cases. I had with my old-fashioned carry-all-the-way suitcase - fat leather straps fed into oversized buckles, a guitar, laptop bag and my trusty 2000-mile backpack. I sweated into the clinic pushing doors open with my guitar case so that I could bump through them with the rest of my luggage.

I descended into a shambles. For a trial group that would ultimately consist of 20, there were 37 people screening, far more than would be usual. This meant that everything took ages and we were shuffled round the ward interminably for blood tests, heart tests, sanity tests etc

After 3 or 4 hours we were finally assigned beds. Because of the number of people screening, we would all be staying for at least one night. After a long week of wall-to-wall decorating, I was happy to put my head down and read.

Day 2 (Selection Day) Thursday, February 8th

We were woken at 6am, before light to discover that it was snowing, and not the usual South-East feathery flakes that you can almost count, but thick hearty flakes of childhood winters and Christmas TV specials, backlit by the orange cones of the streetlights in the hospital carpark four floors below.

It was Britain's snowiest day for years and we were stoically sat on our beds awaiting tubing up.

No breakfast because of the tests. Woe is us.

I have not really got to know anyone well yet, we will be 17 fewer by tomorrow so there's no use in wasting small talk. I am keeping my head down. I've got my books to keep me occupied and intend to put in a marathon reading stint over the next couple of weeks

My Mother, of course, has, from the start, hated the idea of me going in to do the tests. About this time last year the biggest story in the British press was of a group of trialists in a London hospital for whom the trials had gone drastically wrong. The men involved suffered major reactions to the drug that was being tested on them, their heads and necks swelling dangerously and grotesquely. They were very lucky to survive and are still very ill.

I thought that I better put my Mother's fears to rest so phoned home, asking to speak to my next of kin. She has a million questions for me and demands that I relay the medical processes to her in minute detail. I give her a very condensed summary.

I am not an entirely reckless person, though, only 35-40% reckless in fact. I researched carefully into which trials I would be prepared to participate in. The drug we are testing is Levofloxacin which is an anti-biotic used for acute bronchitis and is already on the market.

We spend the day hooked up to ECG (electro-cardiogram) machines to determine our suitability for the trial. I am the subject of constant rebuke from the nurses. For the ECG machines we are required to lie perfectly flat. My natural inclination is to lie with my legs crossed - right ankle hooked in the cradle of my left - I don't even know that I am doing it. I have had my ankles slapped several times (literally.) Some of the nurses are fierce. I cower.

We will find out tomorrow who has been successful. Rumours are circulating that they are looking particularly for slim guitar-playing Midlanders; I am cautiously optimistic.

Day 3 (Selection Day) Friday, February 9th

I'm in. After a torturously long time, I am taking the fact that I have now been assigned a bed as confirmation of the fact. We don't get told a much at all. There is a general mood of acquiescence; nobody wants to rock the boat. It's a bit like One Flew Over the Cuckoos nest but with more wires.

From now on we will only be known by our initials and bed numbers - like tremendously mundane secret agents.

Not much happens. I finish another book - I can at least order some more now I know that I will be here for a while.

We have just had dinner - a very underwhelming macaroni and cheese. There was not enough macaroni and far too much sauce. With consideration, I determine that the ideal way to tackle this meal is to construct a straw from the macaroni tubes and suck up the sauce before eating the straw. I settle on a spoon. Not tasty.

We start in earnest tomorrow. We are up at 5am, will have no breakfast and will have 3 hours of tests before we are 'dosed' We will then have half-hourly ECG tests for 12 hours with 1 hour break for lunch at 1pm. We will be confined to our beds except for toilet breaks. Its going to be wild.

It is currently 9pm. I am hungry. My next meal will be in 16 hours.

Day 4 - Saturday, February 10th

As it has been decided that I will be staying for the duration, I was informed this morning  that my thicket chest would have to be shaved - the sticky blue pads that conduct the wires for the ECG machine keep coming off. The nurse who was assigned this task was one of the African ladies, sadly not the beaming one with the lovely undulating accent but the fierce-looking one that sound like Idi Amin.  She placed a bowl and razor on my trolley table. I suggest a flymo (as any child of the eighties knows, it's a lot less bover with a hover) she settles for Bic and approaches the task with a stern determination that makes me fear for my nipples. I grip my mattress as she carves out 4 patches that sit like crop circles across my arable chest. As she fixes the pads and plugs me in I contemplate whether body hair grows at the same rate as head hair.

Lunch looked familiar - it was exactly the same as on day 2 - I didn't think much more of it, until dinner arrived - turkey meatballs and boiled potatoes - the same as on day 2. Then the horrible realization set in that we were on a 2-day (4 meal) rotation. As I was coming to terms with this the even more terrible realization set in that this meant
another 7 portions of cream of macaroni cheese soup. I cry into my meatball.

There was no mention of the macaroni cheese on the 'possible dangers' page of the information I was sent.

As we are getting ready for bed, nurses come round with racks of plastic tubes which are to be filled with our blood. There are 40 tubes on the trolley table at the end of my bed.

Tomorrow is the first of the blood-letting days. I sleep uneasily.

Day 5 - Sunday, February 11th

My blood flow now ends at a little green plastic tap a couple off centimeters outside of my right arm where I can see my blood through the clear tubing. It is bizarre to catch sight of it.

It is now 3 pm. 8 of my plastic tubes are full. By the end it was taking a painfully long time to fill up my tube and it took much manipulation - vein-stroking and wiggling of tubes. The ends of my thumbs are going numb just thinking about it. It says on my sheet 'bad flow'. I am indignant - they don't know about my flow.

2 more tubes to fill this afternoon. It's not all that much fun.

Day 6 - Monday, February 12th

Today is a 'wash-out' day - no drugs and only a few basic tests, including another blood sample this morning.

I have run out of books

2pm - indescribable delight at never before seen meal (vegetable bake with salad.) It transpires that we get the same 4 meals on 'dosing' days but a different menu on wash-out days. Holy vegetable bake

I am 18th out of 20 to receive my meals (all lovingly microwaved individually for us.) I am constantly hungry. By the time my meals come I am salivating like a bear in Spring and clawing at my bedspread in anticipation.

Day 7 - Tuesday, February 13th

The danger with being couped up like this for over 2 weeks is that I am liable to spend half of the money that I am earning on buying things of the internet in moments of extreme boredom. I have so far ordered 5 books, 2 records and a radio. Books are always excusable, and particularly at the moment - for obvious reasons. I can also justify the radio as it will provide similar entertainment for me while I am bed-bound. The records, though, are bad lapse. I have done so well over the last year or so, only buying 2 records (which had to be had - beyond determination on my part) in a bid to retain my money for the trip and now I have bought 2 within the last week. I am a bad man.

This afternoon, to my great relief, the first of my emergency books arrived - 'Mountains of the Mind' by Robert Macfarlane - I will let you know.

Day 8 - Wednesday, February 14th

February 14th. We all know what today means. Yes its chicken curry day. The ward is eager with anticipation as we approach dinner time. It was also an ECG day so we were hooked up to machines most of the day. I kept falling asleep. This is worse than crossing your legs.

You can't deprive a Toolan of food and stimulation, tell him to lie perfectly still for 15 minutes and expect him not to fall asleep. Its madness.

A list of things that would cheer me up:

A cadbury's cream egg
A cup of tea
More cricket to watch
A surprise hospital outing to the cinema
A pint
A sandwich from the bakers
A bacon and cheese slice from the bakers
Anything from the bakers
A sunday dinner
Another pint
A giant native american throwing a filing cabinet through the window.


Day 9 - Thursday, February 15th

Another blood letting day. The green plastic cannulas (from the latin cant, meaning bastard thing) are inserted into our weary veins in the early morning and the whole process begins again. The worst thing about it, apart from the pain, is the fact that your veins make a little screaming noise as the blood and air mix while entering the tube. Its most unsettling.

What kind of person gives up nearly 3 weeks of their lives to lie in bed and be poked with needles? I will endeavour to give a brief summary.

Some general demographic findings:

We have 10 men and 10 women in our group. I would guess that the median age of our group is 30. Perhaps half are here to fund various travel plans, some are self-employed, some between jobs or taking a break from employment, some remain a mystery. About half have been on a similar trial before.

Of  20 people within our group:

50% are English
25% are South African (5% of which are incredibly vocal)
5% are New Zealanders
5% are Australian
5% are Polish
5% are French
5% call everyone 'sweetheart'
5% shave their heads each morning
5% hate milk and cringe daily at cornflake time
15% are married
5% have bald patches in their chest hair
35% watch any available football
5% meditate
5% have lost 4 kilograms since they arrived
5% are hypnotists
10% are now addicted to online poker
5% are washing their hair with Cussons 'Kind To Hands' handwash
5% teach swimming
5% have regular dinners with members of the Irish rugby team
At least 10% snore (very likely 15% - this would require independent confirmation)
5% are saving up to drive from London to Cape Town
5% are walking across America


Day 10 - Friday, February 16th

Things I wish I had brought with me:

More T-shirts
Comfortable trousers/pajamas
Shampoo
Radio (now bought)
Head-torch (to defeat the evils of lights out)
Nail clippers (my toe nails are like talons and I shuffle around trying to bend them over out of sight.)
More socks (to cover my toenails)
Fewer things I plainly don't need (examples: decorating clothes, slr camera and lenses -confiscated on arrival)
A laptop that played DVDs
Some DVDs

Its Friday and we after this morning's blood test we have the rest of the day off to do anything we wish, providing, of course, it takes place within our small hospital ward and doesn't involve any fun.

I consider it my great misfortune to have been placed opposite an incredibly loud South African woman whose conversations, or monologues, dominate the ward and elbow their way into my thoughts constantly. It is hard to concentrate on writing the story of your last year when you have somebody else's constantly forced upon your consciousness. It is like trying to complete complex mathematic equations with someone yelling random numbers in your ear.

On top of all, this woman, we shall call her DND, is one of the many trial veterans in the ward and delights in relaying stories of her experiences to anyone that will listen. I am a terrible story teller, largely because I tire of telling the same story more than once. Not DND, she will repeat the same anecdotes time and again to ever will bear them. She seems to undertake about 3 trials a year in order to pay for her lavish travel plans - all the staff know her. I have concluded, in fact, that she sold her body to medical science some years ago in some sort of Faustian pact and simply loans it back for the duration of the fabulous holidays that we are forced to hear about.

Half way through.

Day 11 - Saturday, February 16th

The existence of a captive audience seemingly does little for the chef's motivation. I suggest that he is not testing his capacities to the full and that he needs a new challenge. I contend that his macaroni cheese contravenes several fundamental tenets of culinary practice.

The portions are meager. I am hungry again.

Food fantasies are beginning to dominate the conversation.

Things that people are craving:

Guiness
Aero Hot Chocolate
Lindt's Chocolate Balls
Chips
Crisps
Lasagne
Proper curry
Fried brain (like in Indiana) seems to be popular with the South African contingent.

Myself, I am obsessing over the constituents of the perfect roast dinner. If we are to assume that the 'classic' roast dinner is beef-based, then Yorkshire puddings are a given as, of course, are roast potatoes, roast parsnips and gravy. But what about the vegetable selection? I tend to go for leeks with everything (probably in a cheese sauce) carrots, swede and fried cabbage.

The problem with the beef-based dinner, of course, is that its not a poultry-based dinner so cannot contain bread sauce, stuffing or cranberry sauce. Or can it? But should it?

I would be interested to hear of people's ideas of the perfect roast dinner.

Right now, I want everything, I want it on toast and I want it with chips. I want it to be followed by more of it. Then I want it again .I want thirds with my seconds. I want a starter and a pudding sandwiching my two main courses. Mmmm sandwiches.

I am going to be on a serious food mission when I get out of here.


Day 12 - Sunday, February 17th

This morning a pound coin dropped out of the pocket of my jeans and it looked a quite alien object.

It is getting increasingly hard to imagine that over the carpark, beyond the other hospital buildings it is thick with city - bustling streets, restaurants, cafes, pubs, people going about their everyday business while we remain hermetically sealed in our sterile ecosystem.

I take mournful lingering looks out over the car park to normality as I trudge to the toilet trailing the tentacle wires of the ECG machine. In the toilets I tilt my head sideways to poke through the small gap of suicide-proof windows and hungrily suck in cold blasts of real air.

Today was ECG day. Dinner was meatballs.

Day 13 - Monday, February 18th

Blood.

Bored.

Macaroni.

Day 14 - Tuesday, February 19th

Still bored. Yesterday was a rather unpleasant blood day as mine didn't seem to be flowing well again. When this happens the tourniquet is tightened, the cannula wiggled, vein stroked and you are required to clench and unclench your fist to get things moving. This is when it can get painful and the nurses ask "is this painful?" to which the answer is always "er, a bit" which is met with a sorrowful "ok." The process then continues on exactly the same.

One of the poor girls opposite was having real trouble and had to have her cannula moved twice. Her face was sheet white and she looked like she was completely drained of blood. Fortunately for science they managed to suck some out..

Not being a big fan of pain, I have never been keen on needles; I hate cannula day. The group is split between those who watch the thing being pu tin and those who don't. I am resolutely amongst the latter group.

My defense against the evils of needles is counting. And no, its not very effective. For some reason, though, I feel slightly more in control of the situation if I know how long the pain takes in Dave counts. Yesterday though, as that was losing its effectiveness, I moved on to counting in French, then counting backwards in French (the problem being where to start,) then trying to remember classic team line-ups of the past - Lukic, Dorigo, Fairclough, Whyte? Sterland, Speed, Batty…..

All of which didn't help very much either.

Today was a day off which gave us all more time to concentrate on being bored.

Day 15 - Wednesday, February 20th

The main routine of interaction with the nurses comes during the ECG and cannula rounds when everyone in the ward has to be quiet so that our heart rates are steady. Everything is conducted in gesture, nuance and whisper. This seems to reveal personalities more than when talking is allowed. We have about 12 nurses that rotate shifts through the week.

About half the nurses are foreign. These are the funniest to watch. There are a series of trials involving Japanese people at the moment so many of the nurses are tiny little  Japanese ladies. They are my favourites. They are constantly animated in small quick movements yet seem totally calm and quiet. They are full of smiling whispers and please, thankyous and giggles at my piebald chest.

There are 2 middle-aged African ladies of sharply contrasting personalities like good cop, bad top. The good cop is Goodness (true and fitting name) who has a lovely sing-song African accent that breaks down the words into their constituent syllables and individual staccato sounds. 'Un-bil-iv-u-bul' is my favourite, the 'iv' heavily accented.

 "De-vid, this is un-bil-iv-u-bul." She will whisper at my wrong-way legs or narcoleptic tendencies feigning rage.

The nurses go round telling everyone when it is their time to lie down for the 10 minutes before the ECGs are taken which they do in their distinctly different ways. The Japanese can get away with their whispering as they are so quiet. The swarthy middle-eastern nurse simply clicks his fingers, expressionless and pushes his palms to the floor. Goodness catches your eye and holds out both hands, palms down like a priest making a blessing.

Day 16 - Thursday, February 21st

I have felt a little bit like a prisoner since I arrived. The time when this is most acute is during 'dosing.' Dosing, like everything else here, is timed to the second. When dosing time comes you stand at the end of your bed and, after the 2 doctors standing with you have given you a countdown from 10, you get to work. The dose consists of 4 large pills which are taken one at a time from little paper cup, the sort you pump ketchup into in fast food restaurants. You swig them back with exactly 240ml of water.

Once all the pills have been swallowed you must open your mouth for the doctor's inspection to ensure that, by crafty sleight of mouth, you haven't gerbilled the pills away for subsequent expulsion. It is at this point, standing there in your boxer shorts with your tongue out, that it really feels like prison.

Day 17 - Friday, February 22nd

Today is the last full day and a cannula day. I am pleased to say that I did you all proud. It was noted that I had 'excellent' flow. No less a superlative could have been used; personally I think 'magnificent' would have been more fitting. Upon interrogation my nurse confessed that indeed my flow was there all along, it was harnessing the might of my flow that had proved problematic.

We should be out of here tomorrow morning. I have had plenty of time to think about it lying on my back waiting for the ECGs to happen and I must decide what to eat first when I get out. This is a big decision; I have been looking forward to the moment practically since I arrived.; I am starving as I write, I am  starving just after I've eaten. I am constantly starving. To quote my friend Xelis, "I could eat my own teeth with my own teeth."

Stat of the day: I have lost about over 2 kilograms, about 5 lbs, since I arrived (some people have lost up to 6 kgs)

I am in a quandary about what to eat first. I may wait until I am back in Brighton as I have my huge baggage with me. Or I may just crack at the sight of the Burger King that is situated in the main lobby of the hospital (so much for unified health policy.) I am going to eat all day tomorrow and then I am going to have a Sunday Roast on Sunday, possibly 2.

Only 12 hours to go until we get to go outside and make sure everything is still there.



Here is Xelis's piece on hunger in full, its a quality bit of writing from the Galician. (more here) 

hunger
I stretch my facial muscles. I stretch MY TONGUE. I think of and I desire food. I AM HUNGRY. I would like to see something else but I only see food. I hear tons and tons of food falling. I smell meat on its carcass. I can feel the roots of wheat growing under my feet. I could eat my nails until they bleed. I would like to feel something else but I FEEL ONLY HUNGER. I am hungry therefore I am. I am hungry to the bone. I hear noises where once there was my stomach and now there is only emptiness.There, deep inside there is a big black hole. There, deep inside I can feel a big bang. There deep inside something is happening, a universe of hunger is developing, is emerging from the chaos. Very soon it will take over. Very soon this universe will be bigger than me. Very soon it won't be me who feels hungry it will be hunger who feels me. I am so hungry that I could eat my own fingers. I AM SO HUNGRY I could eat my own teeth with my own TEETH. I could eat the air that I breath. I swalllow it and try to taste it just in case but I still feel hungry. I was hungry, I am hungry, I will always feel hungry. I am so hungry that I COULD EAT MY OWN THOUGHTS. I cannot remember a time in which I was not hungry. I can not even imagine a time in which I will not be hungry. I follow the pain in my stomach that takes me FROM HUNGER TO HUNGER. I could sit down on the top of a mountain searching for the horizon and I would only see an empty sky needing to be fulfilled like an empty stomach. I stretch my facial muscles. I stretch MY TONGUE. I think of and I desire food. I AM HUNGRY. I would like to see something else but I am only see food. I hear tons and tons of…

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