The Biopsy for the stage 2 trial of Vertex
Tuesday 9.10am top floor of the Royal Free Hospital Hampstead. I'm parked in a big single room in the Victoria ward with a great view over Parliament Hill 12 floors below - waiting for my liver biopsy. My sides and lower back are aching right now like i've taken speed - perhaps a premonition of whats to come. Last night i couldnt sleep. first a terrible row with sue, both of us stressed, me after the blood tests and her more understandably after work then college ( shes training as a systemic family therapist) doing observed sessions with a real family ( then watching herself on video as its painstakingly analysed by all) .
Well, we talked it through and acknowledged our parts but then i'd overhead someone else on the trial the day before telling the doctor he'd just flown in for the treatment. I immediately became obsessed with doubts about the fairness of the treatment - maybe the Vertex has already been secretly allocated and i'm being brought in as cannon fodder. Maybe He's getting it ....and I'm not. The old familiar script was off and running. Class war, self-worth - and fear of missing out. Lack 1 Abundance nil. Anyway, to my eternal credit I voiced these fears to the professor today prefaced by an acknowledgement that the grown-up part of me knew they were ludicrous. He laughed then meticulously went through the requirements of a double blind trial like this (ie no-one knows whos getting what - not the patients nor the dispensers).
But i'm jumping ahead. when i finally slept i was visited by a series of vivid and disturbing dreams. First a plane went by with a cut away side through which i could see my wife and son sue and gareth talking happily behind the forward bulkhead as it dived and crashed through a block of flats. I ran down through scattered bricks and masonry flashing lights and sirens but no sign of them.
Next, Me and a few tough guys from the Rooms and the Warriors watching a man berating a woman on an old estate across a river. One of his friends saw us watching and said disdainfully they're only students. Next thing he'd hit her and we were steaming in and it was mayhem. I felt that tribal fear of being in out of my depth.
Then me and sue in the front seat of a plane racing along a runway to take-off with an incredible all round view and seemingly nothing between us and the outside (like the upstairs front seat on the 19 bus). narrowly missing pylons and cables, nearly sideswiping a bridge (we flew underneath it - I flinched and almost wished we couldn't see) we took off through this terrifying tangle of obstacles, gained altitude then suddenly inexplicably came down and settled on a big circular wooden deck like a heliport.
Me and sue were totally unharmed, didn't know what had happened to the others - then realised as i climbed beneath the deck the fuselage was in the water and some people (the survivors) were terrible hurt. I lifted an elegant light-skinned black woman onto the deck and gently laid her out. I'm terribly sorry i said thinking she was dead. a glass of brandy wouldnt go amiss she replied. further down a young man like chatterton dying blood bubbling like frogspawn from his shattered knees face pale yellow with shock. He looked familiar.
lastly, me, sitting on the front steps watching kittens emerge cautiously from the rockery in the dusk their parents flickering quietly out of the shubbery. Suddenly a wraithlike figure ran diagonally across the garden and disappeared over the wall into the night. 'Its Caroline a friend of ours' i thought.
Then, up with the alarm at 7am coffee and chinese herbs then out into the squalling aftermath of a wild storm in my sprayway with the hood up. Past the new Lidl at finsbury park (opened 5 mins earlier at 8am for the first time ever so my new low budget shopping problem is solved now i'm skint unemployed and possibly unemployable for the next 3 months ( or a year of combination therapy if i miss out on the vertex god forbid . I'll be divorced skint and homeless, and without even the hep C to blame everything on).
Meanwhile, back on the 12th floor i eventually discover that the constant sniffing noise outside my room is a nurse crying. When i go out to see she's being comforted by an older woman of indeterminate rank. I retreat discretely but they move off down the corridor. I've just been down to reception to remind them i'm here, a technique i've learned to avoid feeling like a victim. I try to be stoic and philosophical but these long waits with nil information are a challenge - especially when i'm aware from waiting around the previous day that they're chaotic and don't communicate very well. Its now 10am, i've been here an hour.
I'm frightened about the biopsy. Its like the dentist only worse. I get psyched up for it - then no-one appears nothing happens and i get demoralised by the cold and the disempowering lack of any discernable order. Why tell me to come at 9am? Maybe just surrender and pray and read the paper.
Well, he came just after 11am and did the biopsy about 11.20am. My notes at this point degenerate into an almost indecipherable scrawl with only the occasional curse of pain and disappointment translatable. The procedure was a fucking nightmare from start to finish. even now writing this up i'm angry shaking with the injustice of it. unnecessary suffering. remember, i've had 2 biopsies previously, daunting, unpleasant but efficiently performed by empathic authoritative practitioners who acknowledged the reality of the process and respected my anxiety as a patient. their success is marked by the fact that i was marked up for pethidine for the first one settled for 2 coproxymal and that was more than enough. The second one was performed by a woman who reassured me gave clear instructions radiated confidence, used a gun of some sort and i hardly felt it - it felt like a cooperation. and afterwards i had nothing for pain relief, didn't need it.
From the moment this guy manouvered the trolley round the bed then couldnt get the bed to elevate for him to operate from an optimum position i felt my confidence ebbing away. I'm terrified i said apologetically. no response. it was like that feeling you get when you watch someone walk up to take a penalty and you know from their demeanour they're going to miss. Thank god martha the researcher was there to hold my hand. the storm that produced the tornado hail thunder and lightning sweeping past the window simultaneously provided a pathetic fallacy - an appropriate backdrop for what was to come. He applied the local - 2mgs of lidocaine - started the breathing sequence 'in out, hold' and hit.
Immediately i felt the referred pain in my right shoulder, nausea setting in, felt the researcher squeezing my hand saying he's done it, its over, i knew straight away it wasn't, knew he'd missed. i could see him hovering over the table 'No, not enough tissue, i'll have to go again'. No acknowledgement this was a drag, no apology. Then a real rough stabbing feeling - 'breathe in breathe out no sorry next one (no command to hold or release) thats it'. then a slow wave of indescribable pain and a desire to foetally curl then terrible nausea and faintness. Martha squeezing my hand nurse maria taking my blood pressure which was rapidly falling ( she told me afterwards 44/32 on the machine and more accurately 80/50 manual) and next thing the doctor trying to get a tourniquet on me, no explanation - 'i don't want pain killers i want to be left alone' knowing instinctively i needed space to ride the wave till it went. eventually 'No, there may be bleeding i need to get a cannula in to give you fluids. I know on his previous form coupled with the pressure drop this guy has no chance of successfully locating a vein. I try to tell him - show him the one the phlebotomist used but no luck. He starts looking at the old mainline that still hurts like fuck from the day before has a couple of painful fruitless attempts then says 'your veins are not what they should be' I'm too beaten to argue at the injustice and evasion of responsibility contained in that statement. By this time there's a real sense of panic in the room. Martha the researcher is clearly upset and traumatised 'I've never seen anything that rough' she says. Maria the nurse is totally cool - radiating safety. At that point i summoned all my strength and said i'm gonna refuse further treatment the trauma outweighs the benefits. 'I have a duty of care 'he says. 'i'm ok' i say, your blood pressures going up says the nurse and he backs off. ok we'll hold off with the canula'.
I'm given two white capsules of tramadol 'they're halfway between codeine and morphine. ' By this time i don't give a fuck. Diamorphine would be appropriate at this point. I spill the water as i take them lying on my side. I can't move. Eventually they kick in and i rise enough to eat, scooping the food in beast fashion into my mouth instinctively knowing if i eat i'll recover quicker. Anyway, enough for now - i'll write the rest up later - but be assured that particular doctor will never get near me again even with a stethoscope even if it means blowing the trial. more later
Well, we talked it through and acknowledged our parts but then i'd overhead someone else on the trial the day before telling the doctor he'd just flown in for the treatment. I immediately became obsessed with doubts about the fairness of the treatment - maybe the Vertex has already been secretly allocated and i'm being brought in as cannon fodder. Maybe He's getting it ....and I'm not. The old familiar script was off and running. Class war, self-worth - and fear of missing out. Lack 1 Abundance nil. Anyway, to my eternal credit I voiced these fears to the professor today prefaced by an acknowledgement that the grown-up part of me knew they were ludicrous. He laughed then meticulously went through the requirements of a double blind trial like this (ie no-one knows whos getting what - not the patients nor the dispensers).
But i'm jumping ahead. when i finally slept i was visited by a series of vivid and disturbing dreams. First a plane went by with a cut away side through which i could see my wife and son sue and gareth talking happily behind the forward bulkhead as it dived and crashed through a block of flats. I ran down through scattered bricks and masonry flashing lights and sirens but no sign of them.
Next, Me and a few tough guys from the Rooms and the Warriors watching a man berating a woman on an old estate across a river. One of his friends saw us watching and said disdainfully they're only students. Next thing he'd hit her and we were steaming in and it was mayhem. I felt that tribal fear of being in out of my depth.
Then me and sue in the front seat of a plane racing along a runway to take-off with an incredible all round view and seemingly nothing between us and the outside (like the upstairs front seat on the 19 bus). narrowly missing pylons and cables, nearly sideswiping a bridge (we flew underneath it - I flinched and almost wished we couldn't see) we took off through this terrifying tangle of obstacles, gained altitude then suddenly inexplicably came down and settled on a big circular wooden deck like a heliport.
Me and sue were totally unharmed, didn't know what had happened to the others - then realised as i climbed beneath the deck the fuselage was in the water and some people (the survivors) were terrible hurt. I lifted an elegant light-skinned black woman onto the deck and gently laid her out. I'm terribly sorry i said thinking she was dead. a glass of brandy wouldnt go amiss she replied. further down a young man like chatterton dying blood bubbling like frogspawn from his shattered knees face pale yellow with shock. He looked familiar.
lastly, me, sitting on the front steps watching kittens emerge cautiously from the rockery in the dusk their parents flickering quietly out of the shubbery. Suddenly a wraithlike figure ran diagonally across the garden and disappeared over the wall into the night. 'Its Caroline a friend of ours' i thought.
Then, up with the alarm at 7am coffee and chinese herbs then out into the squalling aftermath of a wild storm in my sprayway with the hood up. Past the new Lidl at finsbury park (opened 5 mins earlier at 8am for the first time ever so my new low budget shopping problem is solved now i'm skint unemployed and possibly unemployable for the next 3 months ( or a year of combination therapy if i miss out on the vertex god forbid . I'll be divorced skint and homeless, and without even the hep C to blame everything on).
Meanwhile, back on the 12th floor i eventually discover that the constant sniffing noise outside my room is a nurse crying. When i go out to see she's being comforted by an older woman of indeterminate rank. I retreat discretely but they move off down the corridor. I've just been down to reception to remind them i'm here, a technique i've learned to avoid feeling like a victim. I try to be stoic and philosophical but these long waits with nil information are a challenge - especially when i'm aware from waiting around the previous day that they're chaotic and don't communicate very well. Its now 10am, i've been here an hour.
I'm frightened about the biopsy. Its like the dentist only worse. I get psyched up for it - then no-one appears nothing happens and i get demoralised by the cold and the disempowering lack of any discernable order. Why tell me to come at 9am? Maybe just surrender and pray and read the paper.
Well, he came just after 11am and did the biopsy about 11.20am. My notes at this point degenerate into an almost indecipherable scrawl with only the occasional curse of pain and disappointment translatable. The procedure was a fucking nightmare from start to finish. even now writing this up i'm angry shaking with the injustice of it. unnecessary suffering. remember, i've had 2 biopsies previously, daunting, unpleasant but efficiently performed by empathic authoritative practitioners who acknowledged the reality of the process and respected my anxiety as a patient. their success is marked by the fact that i was marked up for pethidine for the first one settled for 2 coproxymal and that was more than enough. The second one was performed by a woman who reassured me gave clear instructions radiated confidence, used a gun of some sort and i hardly felt it - it felt like a cooperation. and afterwards i had nothing for pain relief, didn't need it.
From the moment this guy manouvered the trolley round the bed then couldnt get the bed to elevate for him to operate from an optimum position i felt my confidence ebbing away. I'm terrified i said apologetically. no response. it was like that feeling you get when you watch someone walk up to take a penalty and you know from their demeanour they're going to miss. Thank god martha the researcher was there to hold my hand. the storm that produced the tornado hail thunder and lightning sweeping past the window simultaneously provided a pathetic fallacy - an appropriate backdrop for what was to come. He applied the local - 2mgs of lidocaine - started the breathing sequence 'in out, hold' and hit.
Immediately i felt the referred pain in my right shoulder, nausea setting in, felt the researcher squeezing my hand saying he's done it, its over, i knew straight away it wasn't, knew he'd missed. i could see him hovering over the table 'No, not enough tissue, i'll have to go again'. No acknowledgement this was a drag, no apology. Then a real rough stabbing feeling - 'breathe in breathe out no sorry next one (no command to hold or release) thats it'. then a slow wave of indescribable pain and a desire to foetally curl then terrible nausea and faintness. Martha squeezing my hand nurse maria taking my blood pressure which was rapidly falling ( she told me afterwards 44/32 on the machine and more accurately 80/50 manual) and next thing the doctor trying to get a tourniquet on me, no explanation - 'i don't want pain killers i want to be left alone' knowing instinctively i needed space to ride the wave till it went. eventually 'No, there may be bleeding i need to get a cannula in to give you fluids. I know on his previous form coupled with the pressure drop this guy has no chance of successfully locating a vein. I try to tell him - show him the one the phlebotomist used but no luck. He starts looking at the old mainline that still hurts like fuck from the day before has a couple of painful fruitless attempts then says 'your veins are not what they should be' I'm too beaten to argue at the injustice and evasion of responsibility contained in that statement. By this time there's a real sense of panic in the room. Martha the researcher is clearly upset and traumatised 'I've never seen anything that rough' she says. Maria the nurse is totally cool - radiating safety. At that point i summoned all my strength and said i'm gonna refuse further treatment the trauma outweighs the benefits. 'I have a duty of care 'he says. 'i'm ok' i say, your blood pressures going up says the nurse and he backs off. ok we'll hold off with the canula'.
I'm given two white capsules of tramadol 'they're halfway between codeine and morphine. ' By this time i don't give a fuck. Diamorphine would be appropriate at this point. I spill the water as i take them lying on my side. I can't move. Eventually they kick in and i rise enough to eat, scooping the food in beast fashion into my mouth instinctively knowing if i eat i'll recover quicker. Anyway, enough for now - i'll write the rest up later - but be assured that particular doctor will never get near me again even with a stethoscope even if it means blowing the trial. more later
posted by Nick Mercer at
11:56 am
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