WE THREE HAVE gone for a quick cup of coffee downstairs as Edwyn’s nurse wants to give him a wash and a shave. He seems asleep as we leave. As she tends to him she becomes concerned. His pupils are non-reactive. He is bleeding again, deep inside.
We arrive back on the ward amid a flurry of activity. Here is the strangest thing: we barely utter a sound, even when the doctor on duty tells us Edwyn has taken a turn for the worse. His breathing, through an orange-coloured tube in his airway, is more laboured with every try. As we wait for the crash team to arrive, we stand mutely around him, his mother, his sister, me. We’re frozen to the spot with terror. I actually feel frightened of Edwyn himself; it’s as if he’s transformed into something so alien, so fearful. I’m watching him fall into a place I can’t follow. None of us touch him.
The crash team arrives with a trolley loaded with equipment. The senior member introduces herself briefly and clearly. Her name is Maggie and she explains that Edwyn will be placed on a ventilator to take over his breathing, that he will become a patient of the intensive care unit. That when the machine is in place he will have a scan to determine what specifically has happened. I catch my first glimpse of a member of the team who will later become a touchstone for Edwyn, a rather severe-looking girl with dark hair and glasses. As we are ushered away by the stroke unit doctors, a controlled hive of activity begins, and I feel an increasing sense of Edwyn slipping beyond my reach.
We spend the next hour and more huddled together on the plastic chairs by the lifts, outside the ward, waiting. My boy arrives with his Auntie Nan. When I called her he was asleep, but they made it to the mini cab office round the corner in minutes. During the journey they held on to each other and didn’t speak. I get down on the floor with him (there aren’t enough chairs), and put his head on my lap. Hazel is on her way to King’s Cross Station where she is due to collect my brother, David, arriving from Scotland. I’ve spoken to her and she in turn to David. The affect of these exchanges has to be borne alone until they meet. Meanwhile our wait continues. People approach, concerned, ask if we are all right? We break the tension with occasional murmurs of comfort to each other. It’s a long time. What’s happening? We don’t dare ask.
•
AT LAST THE doctor emerges to tell us that after some difficulty, Edwyn has been ventilated. The machine is now breathing for him. He’s going to be taken for the scan that will reveal the extent of the damage. The medical people around us say very little, their expressions are so grave we have nothing to cling to. One of the doctors exchanges some gentle words with Will. They suggest we go downstairs to the cafeteria for the forty minutes or so that it will take before they can give us more definitive information. And so we obey.
As we exit the lift on the ground floor, I stay back a few yards and quietly say to Nan, out of earshot of the others, ‘I think he’s gone …’
‘Maybe, love,’ she answers softly. ‘Let’s just take things one step at a time.’
Nan understands the significance of all that has occurred and so do I. I reach out for hope, for positive thoughts, but I’m flooded with dread.
•
OUR STEPS LEAD us through the thronging crowds of a Friday lunchtime in search of a place to pass these minutes. The cafeteria is full to bursting, there’s nowhere to go. We can’t possibly leave the hospital, it doesn’t even occur to us, so we end up huddled by the lifts again. I go to the shop to get Will a drink and a bar of chocolate. I stand in a queue, and I remember clearly thinking how strange this is, there is nothing to distinguish me from all these people. I’m in this queue and where is Edwyn? What is happening to him right now? Where will he go next? Then I remember I’m in a hospital. This happens here, every day, all the time. Multiple horrors. I’m not sure I can relate the weird stuff that flashed through my mind at this time. Unnamed, surreal awfulness. And thoughts of life without Edwyn, as I stand in a queue in a hospital shop. Reality fading in and out.
•
PERHAPS BECAUSE HE is an only child, William has always been a very family-minded boy, close to and fond of all grandparents, aunts, uncles and cousins. At this horrible time he found himself enveloped in family love and concern, everyone distracting themselves from their own thoughts by looking out for him. Petra is very wise and suggests that we wait for David and Hazel to arrive from the station before we go back upstairs.
‘Will is going to need his Uncle David,’ she suggests. I know Petra is feeling the dread too. Will is surrounded by women and David is a strong and loving male presence in his life. Petra is right, and strangely, we feel no urgency.
It is a great relief when they arrive, to be all together, a little safety in our swelling numbers. The journey to the hospital and finding a blasted parking space has seemed unending. Nan waits by the hospital door to meet them. Hazel, who has worked with Edwyn and me for fourteen years, is in pieces. She takes a moment to compose herself before we are united, a great gang of us by the lifts. And now we have to get back among the crowds waiting to rush the first open lift door, to take us up to the waiting news. We made these moves, I know we did, but my memories are indistinct. I was engulfed by terror and for a time lost touch with my surroundings. The next thing I’m aware of is a doctor talking to Petra, Will and me.
But then the first of many miracles occurs.
The doctor doesn’t say the words I am dreading. Instead, he speaks hurriedly and quietly, and tells us that the neurosurgeons who have examined the scans want to try to save Edwyn by operating to evacuate the bleed. This was the term he used; I remember the oddness of it, vividly. He goes on to explain that they need to get the go-ahead from their boss, the consultant, and that Edwyn is being prepared for the surgery right now in the intensive care unit. We should go there.
Will has a bad reaction to this news. He’s calling out, ‘No, no, Dad, no.’ He’s very frightened that they have to operate on his dad. I try to reassure him that this is good news, they are going to help him, but all is confusion for poor Will at this time. I am dizzy with relief, fresh hope suddenly surging through me.
We pile into another lift, to the fourth floor, and find Maggie the ward’s sister at the entrance to the intensive care unit. She confirms that the go-ahead has been given and Edwyn is about to be transferred to surgery. Indeed, in the background I can see a number of people in theatre scrubs bustling around a bed. Moments later we clear the way as Edwyn is pushed past us, lost in a sea of paraphernalia, leaving me again frozen and unable to physically reach for him. I’m so afraid of this strange entity he has become. A medical emergency. The contrast between our reactions – paralysed fear, confusion, helplessness and sense of unreality, and the swift, practised calm of the staff for whom this is commonplace, is marked. I feel we inhabit different planets. I’m in awe of them.
•
AGAIN THERE IS nothing for us to do. Will is begging to go home, to escape. So we decide that that is the best thing to do. Our home is a short drive away, and there is nowhere for us even to sit in peace in hospital. It will be some hours before Edwyn emerges from surgery. At this point I detach. I can’t think about what is happening to him, how dangerous it is. Petra has exactly the right idea. I’m not sure when she started saying it, but with each move we make, each revelation, she would say firmly, ‘Right. Next step.’
•
I REMEMBER LITTLE or nothing of those intervening hours at home. I know I heard that my mum was on her way from Scotland, anxiously leaving my step-dad, Jim, behind. He is still recovering from a leg amputation eight months previously. I’m the oldest of four children. Grace, Nan, David and Hazel. This will become one of Edwyn’s early speech mantras as he tries to pin down his memories of familiar words. Over and over again, listing our names, in various orders.
When my wise and funny, gentle, wry, family-loving dad, William Maxwell, was forty-seven years old, he died of a brain tumour. He collapsed at work and, after a five month struggle, we lost him. This was in 1977, when I was nineteen and my youngest sister Hazel only eleven. Thirty years later, the pain of loss is much less, but the missing him goes on. On the interminable train journey south that day to be by my side and complete the family around me, the memories for Mum are strong and the pain lived afresh.
•
WE RETURN TO the hospital around 5 pm. Will doesn’t want to come and we all understand why. He has gone into a world of his own, self-preservation, away from shock upon shock. He goes to a drama group for teenagers on Friday nights at our local theatre, the Tricycle. They are in the middle of rehearsals for the big production of the year, due in a few weeks. He decides to go as usual. The only way for him to cope right now is to pretend as hard as he can that it’s not happening.
But his dad has made it through this part of the ordeal, safe and sound. Ridiculous as it may be, and especially in the light of discoveries I would later make, it never occurred to me that he wouldn’t. As soon as they told me that they would operate, that he was still alive, that he had a chance, it was as if I had gone into suspended animation for the duration of the surgery. Don’t think. Just hang on.
Next step.
•
MY FIRST IMPRESSIONS of the intensive care unit are that Edwyn is in a place of safety, enveloped in skill, constantly watched over. In the midst of fear and dread, this is a relief. When we arrive he is still undergoing the many procedures to settle and establish him in the unit, and we have to wait a while longer before we can see him. A brief glimpse of an indistinct figure in the distance through a window in the locked doors tells me that Edwyn is real, he still exists. We sit in the purgatory of the relatives’ room, waiting for the summons. To gain access to the ward you have to lift a telephone receiver and ask permission, usually given, and have the doors buzzed open. Two visitors at a time.
Myra and I are the first to go through the doors, where the ICU rules are explained. No outdoor clothes. Plastic apron on and hands washed with antibacterial scrub. We observe this ritual solemnly and obediently. I’m sure Myra has joined me in this Twilight Zone. We are introduced to Sinead, Edwyn’s dedicated, one-to-one nurse. She is Irish and, you can’t help but notice, very beautiful. Amazing green eyes.
And finally, here is Edwyn. He is in a semi propped-up position, although deeply unconscious. He is medically sedated. He has no clothes on his top half. I remember the absurdity of Sinead apologising for having cut his T-shirt before he was taken to surgery. His head is swathed in bandages, with some writing on the left side. ‘No bone flap.’ I register a blip of curiosity about this. My curiosity instinct is kicking in, a good thing in theory, but will soon grow to mammoth proportions and become a source of torment. I will need to know everything and will never know enough.
As you would expect, there is lots of technical equipment and quite a bit of noise. Edwyn has a tube in his open mouth with a big tap-like ending on it, connecting him to the ventilator. Sinead never stops working; Edwyn’s gear needs total attention. Alarms go off constantly, heart-stopping at first, until you realise it just means something needs changing, resetting, a refill attaching. Nothing to panic about. After each procedure, adjustment, reading, observation, Sinead turns to Edwyn’s chart, a thing the size of a wall map – a new one for every day – and makes a record. Now, this is how mental I am that day. Before I even hold Edwyn’s hand or think about muttering some words to his unresponsive being, I look for the monitor that will tell me his blood pressure reading. I find it quickly and register relief as a physical adrenalin rush. It looks entirely normal. Sinead sees me looking at the monitor and points to a white liquid substance that enters Edwyn’s body via a thin tube.
‘That’s the good stuff,’ she smiles.
And I look at his face.
In the coming weeks and months there will be so much more anxiety and worry, but for this moment I am transported to a place of happiness, as I see in Edwyn’s face that the horrible pain and pressure of the last week, which manifested itself in a strained, puffy, desperate appearance, has completely evaporated. Indeed, gazing at him, I don’t believe I have seen his expression so relaxed and restful for many months. Whatever work these demigods, the surgeons, had performed, they had given him, for the time being, an ease that his poor body and brain so needed. I was thankful.
Nan later tells of her amazement when Sinead is completing her neuro-observations, which involve checking the reactions of Edwyn’s pupils. As Sinead checks, each pupil contracts in turn under the light of her torch. Incredible signs of brain activity.
•
WE TAKE TURNS to be with him, myself, Myra, Petra and Nan. We have all of us begun a process that will continue for months, that of expecting Sister Ramsay (Nan) to be able to answer all our questions, to be the fount of all knowledge, our personal expert – a role she fulfils slightly reluctantly, and always cautiously. She walks a tightrope of translating for us and helping us understand as much as possible, which is very comforting, but is careful not to speculate on things that are beyond her field of expertise, or tread on the toes of those whose care Edwyn is under. Unless they deserve it: ever the professional, but this time it’s personal. For Myra, Petra and myself she is an especial crutch. I don’t know how I’d have got through these times without her steady, reassuring back up.
•
DR CHAKROBARTI IS impossibly young, but extremely serious, and one of the neurosurgeons who operated on Edwyn. We have to wait for a meeting that evening with him for the full picture of how Edwyn is doing. In later weeks when I see him in the lifts or by Edwyn’s bed, in a much lighter mood, beaming at Edwyn, he will appear to have an aura of brilliance around him. Imagine being his mum, I would think; how ridiculously proud she must be.
His manner is quiet, sober and frank. Everything you want, really, except I’m hoping against hope that all his words will be encouraging. This turns out not to be the case. The first thing he does is ask us how much we understand about what has happened to Edwyn up until his collapse this morning. I briefly run through the events of recent days as best as I have understood them. He nods and proceeds to explain the nature of the surgery he and his colleagues have performed and what the immediate dangers are.
‘Edwyn remains dangerously ill,’ he begins, and immediately we are all back in the grip of fear.
The greatest risk, he explains, is of swelling occurring post-operatively. He warns that if this happens, Edwyn will probably die. He doesn’t flinch from using the word. It’s crazy, but I wish he would lie. He does say, and I remember this, that the risk of bleeding recurring is slight, again triggering the vague ping of wonder in me. That danger has passed?
He goes on to explain the likely long-term effects of the bleeds in Edwyn’s brain. He counsels that, on the evidence of what they witnessed during surgery, the damage is likely to be severe. Petra asks if he means both mental and physical? He nods a quiet assent, then asks if there is anything we want to ask him.
Later there are so many questions, but for now there are just a basic few. I ask if there is a timeframe for the danger. How many days?
‘The next three or four.’ That’s clear, then. The target. Beyond, we will deal with. Next step.
Myra, who has already chosen the path of complete faith in the professionals who are watching over Edwyn, in combination with relentless positive thinking, emphasises her certainty that Edwyn is in the right place, a good place. And we set our course for the vigil ahead.
•
WHERE IS EDWYN in all of this? I’m recounting the experience of his illness mainly from the perspective of my own take on what happened. Edwyn, blessedly, has no memory of the acute phase. He has also lost approximately two weeks prior to the onset of events. From close questioning, I estimate Edwyn’s awareness and memory beginning to return in a woolly way around five weeks from that first Sunday night. I say ‘blessedly’ because we believe his suffering was considerable before the second haemorrhage took him to pain-free oblivion. Eventually he would ask me to recount the whole story, chapter and verse, as he listened in silent amazement. But that was many months away. So, no memory, but something else. In a piece of writing he dictated to me in late 2006 for his internet blog, he unexpectedly said this: ‘Little by little I experience new ways of life. For example I think I experienced death. I fought back to life. Confusing and generally surreal.’
I asked him to tell me more. He was lost in thought for a while.
‘I remember, I don’t remember, but a feeling.’
Then, ‘I think so.’
That’s all I got.
•
AT TIMES LIKE these for people like me – the faithless, the irreligious – strange things happen. I didn’t start believing in higher powers, but I did pray. Or maybe I just pleaded. I’d reach for my dad, for Edwyn’s grandfather, and beg them to help. I had a dozen little superstitious tics that I shared with no-one, and that I carried with me for many months. When people wrote and told me they were praying, lighting candles, organising something called remote healing, for God’s sake, I was desperately grateful. I’d take anything. One couple wrote to tell me that they kept a picture of Edwyn in their living room and would touch it for luck each time they passed. Another guy wrote that at times when all was quiet he would hear a chant start up in his head: ‘Come on Edwyn, come on Edwyn …’
But ultimately, that Friday night after his operation, and on subsequent nights, I knew that this was Edwyn’s private battle and that his survival, having been made possible by the genius of modern neurosurgery, was now down to some struggle he was waging on a plane that we are not privy to as conscious humans. But (and feel free to scoff, and as a practised cynic I would too), I had a strong sense of this fight taking place, and also of my own helplessness to influence the outcome. Still, of this I was certain: if he did come back it would be to a life worth fighting for. If he couldn’t continue to be Edwyn in a way that made sense to him, he would let go. Why did I absolutely know this? I did. I just did.
But I didn’t yet know what the outcome would be. The first night we would not spend by his side, ironically, was the one where he was in the most danger, and under deep sedation. The hospital said we could phone and check on his progress through the night, and when the staff told us to go home we obeyed, which we hadn’t done previously. Gazing at Edwyn, I knew I could leave him deep inside his silent struggle. It was time to retreat for a few hours, and allow myself to regroup. This is a measure of how much confidence you can have in the ICU; at least in our experience of it. The NHS at its brilliant best. No slacking, no lapses, the cutting edge. Everything here happened at such a level as to render my interference ludicrous.
•
WE GO BACK to the house. Mum arrives. I’m straight away back to being her child. She tells me she saw something in my face she recognised from her own life, something she hoped never to see on any of her children.
I have a glass of red wine. I’m craving it, a drink, suddenly. There is a tiny bit of exhilaration in the midst of the worry. He didn’t die, he’s still here, he will keep fighting. He didn’t die.
We try to get some sleep.
Uncle David sleeps in beside Will. Hazel takes Mum over to her house. Nan gets in with me. How often can you phone without being a crazed nuisance? Several times during that night, as I pestered Nan, she judged it would be all right to call. Each time with the same result. No change. Stable. Temporary relief, respite. At one point I creep downstairs to let Myra know her son is holding his own.
•
THE NEXT MORNING we take turns to sit with Edwyn. We change shifts. We visit the public cafeteria for the endless cups of pretend cappuccino. They don’t sell much: pre-packed sandwiches, canned drinks, chocolate biscuits. Later, as long-term residents, we will be admitted to the inner sanctum of the staff canteen. Let joy be unconfined.
Since that first Sunday night I find that I am sometimes thirsty, but never hungry. And never tired. For the time being, sleep and food are surplus to requirements. I do sleep, but never for long and I don’t miss it. Amazing. I am totally wired, on red alert, watchful.
Throughout this long Saturday, Edwyn remains cocooned in his chemically-induced sleep. The sedation is like switching him to stand by, helping to reduce the risk of dangerous swelling in his brain. The ‘No bone flap’ message on his bandage means exactly that. Edwyn has had a craniotomy, which means a piece of skull has been removed. It is fairly sizeable and will allow his brain to do a little post-operative swelling without creating dangerous pressure.
But the doctors want to reduce the sedation as soon as they can, to see if Edywn returns to consciousness of his own volition. And if he does so safely. After an evening consultation with another of his neurosurgeons, again an implausibly young-looking man, called Dr Ahmed, we learn that an attempt will be made to wake him up tomorrow. Sitting beside him that evening, I hear Sinead, who talks away to him all the time as she goes about her tending care, say, ‘Ah, come on Edwyn. Wake up for us …’ She’s only known him for twenty-four hours, totally spark out, but she’s rooting for him. It’s got to be done, this waking, I know, but nonetheless, here we are again, seizing up with anxiety. There are bad things that can be revealed during this time. The first question is, Will he wake up?
Okay. Next step.
•
DAVID DRIVES MY car to the hospital after a night that is a carbon copy of the one before. Several middle-of-the-night calls to his nurse, a young man called Abraham whom I never meet in the flesh. I can’t believe it’s only a week since Edwyn’s collapse.
Astonishingly, when we arrive at the hospital, the process of bringing him back to the land of the living has already begun. David, who has so far been part of the incredible back-room support team, in charge of logistics and transportation, is seeing Edwyn for the first time. I can see how affected he is, tears in his eyes as he absorbs the sight of his brother-in-law and friend – intubated, unconscious, attached to an array of monitors.
Soon we are watching with our hearts in our mouths, listening as Edwyn’s nurse, a new one, a Kiwi girl, Emma, cajoles him to open his eyes. She calls his name and rubs her knuckles quite firmly into his upper chest. This will irritate Edwyn awake apparently; I’m a little worried his eyes will fly open and he’ll punch her.
But it works, and lo, he languidly opens his eyes, which immediately roll up into his head. He tries to steady them. I’m holding his hand and grinning like an idiot, softly jabbering incomprehensible drivel at the poor soul. I squeeze his left hand and feel him reassuringly squeeze back. He’s barely there, but he recognises us, he tries to smile with his eyes, the huge breathing tube in his mouth getting in the way of anything else. Imagine this awakening, how on earth must it have felt? But, amid the emotion, we all do our best to reassure, to soothe, because we know he can feel it. Even in the depths of this surreal, soupy world he inhabits. Back to sleep he goes.
But his new nurse doesn’t let him rest for long. Just as they do when you come out of anaesthesia, she keeps jerking him back to the world and encourages us to do the same. It seems cruel; all he wants to do is close his eyes. I now know how hard it must have been to open them. Edwyn had double vision for many weeks after his reawakening. Months down the line he had to cover his left eye with his hand in order to focus. His balance mechanisms were non-existent. The mere act of opening his eyes for more than a few seconds to begin with would induce horrendous vertigo. Almost immediately his eyes would roll up in their sockets and he would be forced to close them, especially against the unrelenting harshness of the ever-present strip lighting. So he did really well in those first hours to get the message of recognition across to us.
•
I HAD FORMED a close relationship with one of the pieces of equipment Edwyn was hooked up to. He had a probe in his head attached to a monitor which measured something called intracranial pressure (ICP), or swelling, to you and me. Anything between 1 and 15 was fine. Above that, you start to worry. How did I know this? I must have winkled it out of someone during the last thirty-six hours. I am a pain in the neck.
I would sit for hours looking at my precious numbers, as if taking my eyes off them would somehow be tempting Fate. I don’t really recommend this approach as eventually it drives you nuts, but there was nothing I could do to tame my obsession with the stats.
Until he woke up, Edwyn’s ICP bumped along quietly at around 8, 9, 10. What would it do now? As the day wore steadily on and as Edwyn became easier to rouse, so the numbers inexorably climbed. I sat by his bedside around four o’clock in the afternoon, my teeth clenched, chest tight, watching the monitor hit its all-time high of 24. Blood pressure was back up again too. Weird spikes. Nobody seemed to be panicking except me. I wasn’t causing a fuss, just having an internal, silent panic. Then, gradually, down came the ICP. Sean, the dashing charge nurse of the ICU, explained that that was what to expect after sedation: a surge of pressure, then if all is well, a slow decrease back to normal levels. All is well. An adjustment of the level of the infusion of anti-hypertensive (for the blood pressure), and my jaw begins to relax. I’m aware that my neck is sore. I think I’ve been holding my shoulders up around my ears for a week. Sean is just the type of person you need in a place like this, at times like these. Clever, immensely capable and always happy to talk to you. I could never convey how reassuring people like Sean and Sinead are through these days. They got me through the intolerable. I will never forget.
•
I’VE NOT FINISHED worrying, I’m afraid. It’s too much, this day. I can’t go home. Even though it’s frowned upon, nobody objects when David and I bunk down to spend the night in the relatives room. I’m determined not to be a nuisance to his night nurse, an Aussie agency nurse who has never worked here before. But in my new role as a self-appointed ICU expert, I quietly keep an eye on things – good grief, does my egomania know no bounds? I can imagine Edwyn’s reaction if he was in any fit state. A few years back, during a slow evening at the studio, Edwyn and Seb devised an idea for a great new TV programme called Grace Knows Everything. Grace sits in a swivel chair, rather like the one on Mastermind, except she takes questions from the audience. Any subject, she has an opinion and goes on at length until eventually a voiceover announces: ‘I’m sorry, folks, we have to leave Grace Knows Everything here, as we have run out of time.’ And so, the insufferable bore that is Grace is cut off in mid flow. The sad thing is, I didn’t even take offence at their mocking. It was a bit too accurate.
•
APART FROM A sharp dip in Edwyn’s blood pressure necessitating another adjustment during the night, the next day dawns with no further incident. This blood pressure roller-coaster is just beginning; I need to get used to it.
•
AS DAWN BREAKS on Monday morning, 27 February, we are joined in the relatives’ room by a couple of patient visitors. They are Asian, I think Bangladeshi. I remember a young girl, very stylish, very distressed. They are joined by two police officers who are comforting her. The girl’s young brother has just been admitted from surgery to ICU following a car accident. His bed is placed next to Edwyn’s and he is very poorly.
This is one of the hard things about ICU. There is a constant drama being played out in the relatives’ room. There is no privacy; we are all caught up in a shared maelstrom. Some, like us, and this young lad’s family, are too gripped in their own fear and terror to hold conversations with others about the state of the person who lies through the locked doors of the ward. So you are eyed curiously by the other group, who share the gory details of their family circumstances and keep each other updated with progress reports. I’m not the only deluded know-all around here. The place is full of experts, not just on their own family member, but on everyone else’s. There is a lot of heated debate on what might be the best course of action for each patient. Amazing. Up to a point this behaviour is understandable. Some have been here weeks. But, reluctant as I am to have a go at anyone who finds themself in this stressful situation, there are a few competitive types among them. One mad woman would brag about her daft son who, having come off his motorbike seriously for the second time, was about to move out of the unit, having, happily, emerged from a two-week coma. ‘We’ve just had the adaptations taken out of the house from the last time!’ she gleefully shrieks. And his biker mates regaling anyone who would listen with their hilarious near-death bike crash stories.
And then there are the endless complaints about the ICU staff. Each member of staff is taken in turn, weighed in the balance and found wanting. Perhaps our experience of this unit is uniquely good, but I doubt it. And I certainly have no illusions about the patchiness of standards in the health service. We’ll have plenty of experience of that in the months to come. But the good souls who worked in this unit did not deserve the damning gossip of the relatives’ room. Sometimes it was easier to sit in the corridor.
Monday turns out to be a hectic day. On one of my early visits in to see Edwyn I get a shock. Where’s my favourite number gone? The ICP number is nowhere to be seen. Sean quickly reassures me. The probe has gone too, as the danger of Edwyn’s brain swelling is judged to have passed. No need to monitor it any more.
I’m torn between jumping up and down and a powerful feeling of disbelief. But Edwyn has come through this phase with absolute flying colours. The doctors, not for the last time, talk to me about how good his underlying health is. How strong he is. Looking at the state the poor man is in, this might seem to stretch the truth, but it’s all relative. I agree wholeheartedly; I can feel the force of a fight from him, an inaudible vibration.
Will comes to see him today. This time Edwyn seems upset. I’m worried he thinks I’ve made a mistake exposing his boy to the spectacle of his dad in these frightening surroundings. Will is subdued – fine with his dad, but clearly shaken by all he’s had to cope with.
•
THE DAYS OF anxiety are far from over. There will be times I’m very scared that Edwyn might go properly backwards. But he never really does. All there is to do now is wait and watch as the truth about what has happened to Edwyn unfolds.
First of all, there is to be another operation. A consultant anaesthetist, very well groomed with bright lipstick and expensive jewellery, explains the risks and the benefits of a tracheostomy. Edwyn will need breathing support for some time to come and the awkwardness of the tube in his mouth is plainly obvious. I’ve already been asked to keep a close eye on his wayward left hand, which has had several goes at yanking his breathing tube out. His nurse explained that it’s very precious, as putting it in proved very tricky. He had to have a woman’s size tube in the end.
The tracheostomy is an alternative route for a breathing tube, through the trachea, or windpipe, and involves making an incision in the throat. Once sorted, it will make him much more comfortable and hopefully, in time, allow him to speak by means of a valve that will open and close to divert air to his vocal chords. There are risks apparently, but I have blotted them out. They must have been the usual ones associated with anaesthesia needed during the operation. To dwell on them is not helpful. It seems clear that this procedure is vital. I sign the forms and the surgery is scheduled for Tuesday’s list.
As we leave on Monday evening, the family of the young boy in the bed next to Edwyn are gathered in numbers that way exceed the rules of the ICU. But nobody seems to mind. The curtains are gathered round, bulging with so many people that they brush against Edwyn’s bed, which upsets Myra a great deal, as do the sounds of crying and praying that fill the ward. I feel for them, my heart goes out to them, but the base part of me recoils. It’s as if this awfulness might be contagious. I feel I can’t get too close, it’s too raw. When we return the next morning, the bed has a different occupant.
•
IT’S REALLY HARD to see Edwyn put under again so soon after waking up. We’ve reassured him as best we could, never sure how much, if anything, he’s taking on board, and then he’s being wheeled off, with his various bits of technology stacked around him on the bed.
Myra, Petra and I go to the Starbucks round the corner and, when our restlessness gets the better of us, we go for a chilly walk on Hampstead Heath. It’s been a freezing week since our troubles began. It’s even snowed a few times. But mainly it’s been that damp, bitterly cold weather that February specialises in; a miserable backdrop for all the to-ing and fro-ing to the hospital. The walk actually helps us relax a little and soon the time passes and Edwyn’s back on the ward, with his new orifice, looking much more comfortable. The significance of a tracheostomy tube, the journey to be weaned off it, will soon unfold. What a voyage of discovery we are on.
Once his ‘trachy’ tube is in, Edwyn gets another type of tube, one that will become the bane of his life, a tremendous nuisance to his nursing staff and will drive me to the brink of a nervous breakdown. This is the blessed nasogastric tube, which goes up the nose, down the gullet and into the stomach. It’s to deliver much needed nutrition and medication. His new nurse, Eleanor, as she hooks up the first bag of liquid food, turns to us with a grin and says, ‘That’s his steak and chips.’ During the night Edwyn yanks the tube out for the first time. It is put back down again. A pattern is about to be established. A painful one.
•
EDWYN TAKES IT easy over the next couple of days. He gets slightly stronger, slightly more awake each day. He still only manages a few minutes with his eyes open before slipping back again into oblivion. He can’t communicate, he tries to smile if you josh with him, he’ll squeeze your hand if you squeeze his, but he has a very far-away look and I have no clue as to what his experience of all this strangeness is. He seems to be in no pain. Only irritated by the tube in his nose, which gets pulled out several more times. Constant vigilance is required.
•
TRYING TO GET everyone to eat is a struggle, and back at the homestead, tense competition is emerging. David’s name for it – The Soup Wars. For those who are at home on relief from hospital duty there are hours to fill so, suddenly, everyone is making soup. David, Mum, Hazel, and Amete, my friend who has worked with me at home and in the studio for ten years. It will become a competitive business, this soup making. David reckons he is triumphant. My poor mum, Sadie, looks dubiously at the lentil soup she has made. Scottish women of her generation are generally past masters at homemade soup. They have tried and tested variations-on-a-theme down the generations, producing cast-iron, guaranteed winners. But she could only find Edwyn’s fancy puy lentils in the cupboard and the resultant sludgy colour is worrying her. We reassure her it tastes great. I sample a bit of them all. I hate to admit it, but David rightly claims the crown. In a tight contest, he demonstrates exceptional natural ability. As our father used to say, ‘The only thing holding me back is my modesty.’
•
ON THURSDAY MORNING I drive Will to school. Keen to go back, he is continuing with his normality formula. I give him a hug and watch with relief as his mate catches up with him and places a kindly hand on his shoulder. I look at them walk through the gate together and think about how brilliant teenage boys are.
•
A MERE SIX days after Edwyn arrived in ICU, Sean announces that he is to be moved to an neurosurgery unit on the tenth floor. There he will still receive intensive nursing, comparatively, but it’s not the ICU idea of intensive and I feel panicky. Sean reassures me that this is the normal reaction. ‘It feels so safe here, I know, but there is no way we would be moving him out if he needed to be here, I promise. He’s a success story for us. We’ve been losing a lot of people recently. He’s done brilliantly.’ Then he leans over Edwyn and says, ‘We can’t keep you here any longer, mate, you’re doing too well. I know you probably think that’s mad, cos you feel like shit, but honestly it’s true. We’ll miss you, Edwyn.’ Edwyn smiles wanly at him. What a pro.
But Edwyn is certainly not so safe away from this place. And from here on in, I’m back on duty, to keep my eyes and ears open for the inevitable failings and omissions. You may think this is evidence of my neurosis, my over-protectiveness, my anxiety. I have all these failings, admittedly, but hospital life gave me good reason. I would have to watch the staff like a hawk if Edwyn wasn’t to experience unnecessary setbacks. I couldn’t assume they had it under control. On some wards they did, sometimes, on some shifts, but it was scarily inconsistent care. I believe our hospitals do the critical, cutting-edge stuff quite brilliantly but the long-term therapeutic stuff, the less glamorous, coalface activity, well, inconsistent is a kind way to describe it. And when you’re in the middle of it, you don’t feel so kindly. I would swing from murderous to despairing. These were joys in store.
Edwyn remained in the neurosurgery unit for another five days, two of which included the weekend. Hospitals grind to a halt at the weekend. The tumult of the weekdays, when you can’t get in the lifts or find a seat in the cafeteria, evaporates and time hangs heavy. Tumbleweed rolls along the corridors. There are hardly any doctors around. If you needed one you would be seen by someone extremely lowly, an overworked soul who covers the basics and only troubles his boss in an emergency, which you are convinced they would be unable to spot in any case. Edwyn would often be visited by a doctor of no fixed specialty, hedging his or her bets and avoiding making any decisions one way or the other, which was probably just as well.
Edwyn’s care from this point forwards, although still involving high maintenance as he remained on breathing support and tube feeding, would be a matter of dogged routine. He would be seen regularly, at least once a day, by the team of super nurses from the critical care outreach team, one of whom was Richard, from Edwyn’s first morning, and another, Jo, the nurse with dark hair and glasses who fought for his life on the ward that Friday morning. Until his tracheostomy comes out, he is still their patient. Over the coming weeks I will see Edwyn visibly brighten when either of these two appear at his bedside. From early on during his recovery he had an unerring instinct for who the good guys were, which was an immense source of relief to me. More evidence that his marbles were intact; he was still a great judge of character.
•
LIFE FOR US, his family, had become a succession of days, each a separate and distinct slice of endurance. For me, the time spent in hospital goes fast. I’m so absorbed by the detail of each procedure, each reading, each snippet of information. I watch everything that’s going on, monitor every change, with my semi-deranged beady eye.
On admission to the neurosurgery ward I notice that Edwyn’s tummy is distended. This is probably because he’s having trouble processing the liquid food. His system has slowed right down. As the months pass I discover how obsessed hospital staff are with bowel regularity. Rightly so. An obstruction in a patient like Edwyn, immobilised, drugged, on breathing support, post-operative, is a real risk, with the worst case scenario involving surgery. But when I draw attention to the swelling a nurse asks me, ‘Hasn’t he naturally got a pot belly?’
So of course I scream back at her: ‘Are you mental? Can’t you tell the difference? What are you doing in this job? Have you any clue what this man has just been through?’
No, of course I don’t. I don’t say any of this out loud. I simply reply in the negative, quietly, while listening to the strange, high-pitched noise in my head and feeling my stomach muscles twist and turn just a little more.
Then Edwyn’s blood pressure shoots up again. Will he go back to intensive care? I wish he would. I’m distracted with worry, beside myself.
This moment passes, gets dealt with, eventually, and we move on. And this is how it is, day by day. One small drama after another. One frustrating exchange following another.
•
TO PREVENT EDWYN from pulling his nasogastric tube out again, the nurses have placed a large, soft boxing glove on his wayward left hand. This is controversial. Some NHS staff believe it to be an abuse of human rights. Others see it as a necessary evil. I can see both sides of this argument. Of course, he hates it. He spends the afternoon trying to bite it loose. On Saturday night, my birthday, someone gives me permission to remove it for a while as long as I keep close watch. Edwyn is so relieved he takes my hand. Normally, we are not big on hand holding. Edwyn is touchy-feely phobic and I’m not far behind. When presented with other people indulging in public displays of affection, he would usually mutter, ‘Doomed!’
Then he strokes my face. Dear God. We sit in the gloom like this for an hour.
•
SUNDAY 6 MARCH, two weeks to the day since Edwyn’s admission, is another day of blood pressure worry. It keeps spiking up to the old scary levels. There is an experiment going on to find the correct daily balance of three types of medication. Edwyn’s room is filled with the sound of the breathing machine and the beep of the pulse monitor. My heart is in my mouth all day. And I have to say goodbye to Nan and Petra. They have jobs and children and other patients who need them.
At one point I’m sitting in the corridor outside Edwyn’s room and I’m feeling just awful. The blood pressure worry is ongoing. From nowhere a smiling young male nurse approaches.
‘Are you a mummy?’
‘Yes…’
‘Happy Mother’s Day!’ And he gives me a big hug. I hadn’t noticed it was Mother’s Day. And I’m laughing and crying. The kindness of strangers. What a lovely boy.
•
ON MONDAY, MYRA and I arrive on the ward and are greeted by a sight both exhilarating and alarming. Edwyn is swinging above his bed in an electrically operated hoist, a giant sling-like thing. Richard from the ICU team is supervising as they lower him into a super beefed-up wheelchair, with support sections for every part of the body. He is completely limp, looks nothing like himself. Yet I’m very excited to see this giant leap, as well as a little horrified at his appearance.
Edwyn, we quickly realise, absolutely hates the experience of being upright. We know this because, miraculously, the staff have put the speaking valve into his tube. When asked questions, he weakly answers ‘yes’ or ‘no’. So my joy at hearing his voice swiftly turns into a paroxysm of anxiety as he manages by exhausted gesture and sound to let us know how knackered he feels, how desperate to get horizontal, almost from the first moment he lands in the chair. It has to be done, but it’s not easy to watch, this first thirty minutes out of bed. Later, when he can get his feelings out more effectively, he will refuse to be seated upright for that long. The sensations of nausea and vertigo, combined with his double vision, make it unbearable. For Edwyn, that thirty minutes must have seemed like eternity. It took a little while for the penny to drop for me; Myra got the message quicker that day. You live and learn.
•
A COUPLE OF days later, Edwyn is signed off by the neurosurgeons, whom I haven’t seen again since those early days in intensive care (they do their rounds early in the morning, before I’m allowed in). We’re suddenly on the move again. I had been told he would stay on the neurosurgery unit for a long time. Indeed the sister seems a little annoyed that he is being moved. It seems the stroke unit consultant has claimed him back as his patient.
It’s incredible how little most doctors communicate with their patients and their families. Unbelievably, in 2005, it was still deemed entirely acceptable to keep relatives in the dark. Over Edwyn’s time in hospital I had plenty of opportunity to analyse doctors in general. My theory is the obvious one. They are insecure, as competitive types usually are. Many are socially awkward. There are lots of cultural norms within the profession that they use to cover up their difficulties; aloofness, imperiousness, brusqueness. Many seem to absolutely loathe contact with relatives, particularly the most senior doctors. I didn’t feel so much patronised as brushed aside, their discomfort palpable. They hate the internet, with its ready information and answers for the amateur. You have to screw up all your courage to persist with your questions, to face them down.
In the end though, I was not much bothered by this lack of good bedside manner, particularly from the neurosurgeons. Given what they had done for Edwyn, the mind-boggling genius of it, I had nothing but gratitude and respect for them. I ventured once to thank the head of Edwyn’s surgical team when we met again further down Edwyn’s treatment road: ‘I have no words to express how we feel. For everything you and your team have done for Edwyn, for all of us.’
‘Well, you know what we always say,’ he came back, unaccustomedly jaunty. ‘Neurosurgeons one, God nil.’
My sister, the nurse, was apoplectic when I related this to her. The air was peppered with unrepeatable expletives. I didn’t take such exception, rather delighting in the swagger of it.
•
OUR MOVE BACK to the stroke unit sees Edwyn positioned in a four-bed bay directly in front of the nurses’ station. High dependency, they call this. The unit’s manager, Pauline, who was on holiday when we were here before, but has heard all about him, gives us a warm welcome. Edwyn’s bay mates are Phyllis, Ronnie and Doris. Edwyn is the youngest person in this unit by quite some way and, although the place completely freaks poor Will out, viewing it as Hell’s antechamber (to the extent that I practically have to drag him in to see his dad twice a week, a position Edwyn has complete sympathy with for the duration of his stay), I feel Edwyn will be safer here. On this ward the staff work brutally hard. The nursing is largely unglamorous, nitty gritty, not to say mucky, stuff. And they really put their backs into it. These are the most dedicated nurses we will encounter, for this is not a fashionable, high-tech specialty. The unit crosses over with geriatrics (or God’s waiting room, as some were wont to call it), the real Cinderella of the health service. It is a testing ground of nursing skill and dedication. All hospitals should be judged by the standard of care they mete out to these, the most vulnerable, and often least supported, souls in our midst. Many of them received only a few visitors and were pretty much without advocacy. They relied on Pauline (who led from the front), and her team, for human warmth at the tail end of their lives. Edwyn and I settled in for what would turn out to be five long weeks in the company of our newly discovered community of the vulnerable.
•
A YOUNG IRISH doctor talked to Edwyn and me many months later, in the canteen of a different hospital, about the squeamishness of the modern world when confronted with the realities of illness and death. Having travelled and worked in many parts of the world where strife, poverty and health problems walk together, and where people seemed to accept the bad stuff much more readily as part of the fabric, the balance even, of life, he reckoned we in the West have conspired to hide away from unpleasantness, to hermetically seal it off from our perception of normal life. Of course, this can’t be done for ever, because most of us will have to deal with crises in our lives at some point. It can’t be denied, this messy and unpleasant aspect of the human condition. There will be trauma and losses. But when they do occur, we are particularly ill-prepared in the modern world. I certainly felt this applied to me. During all the months Edwyn was in hospital and for many more afterwards, I wrestled with a sense of unreality and, sometimes, injustice. A longing for a return to our charmed life.
At times, in the strange moments between sleep and wakefulness, I almost believed I could will what was going on away. I would wake to the same feeling of intense anxiety again and again. I knew there was something vital I had omitted to do. A second ago, when I was asleep, I knew what it was. Now it was gone. I’d rack my brains to remember it. It was very real, this urgent sense of something needing to be attended to. But it would never come back. Soon, I could rationalise that it was a symptom of the situation; there wasn’t anything urgent I’d missed. But I never quite believed that. The nagging sense that I was allowing something to slip through the cracks persisted, every morning, for most of the first year.
•
AROUND US, life really did go on. Casual, merciless, normal life was carrying on as usual as spring was bursting out all over lovely, leafy Hampstead, just outside the hospital doors. I resented it. Happy, healthy people strolling with their children in the sunshine, sitting in restaurants and cafes chatting, reading newspapers, shopping, laughing. And for a little while, I truly hated them for it. Horrible, but I couldn’t help it.
But it seemed to me that Edwyn had joined a secret society of the sick, especially the long-term, really sick. Sometimes late at night I’d go to the cafeteria for a coffee or, in later weeks when he was eating and drinking again, to pick up cold bottles of water (I had to buy it in small bottles regularly because there was no way to prevent it from going lukewarm in the fetid heat of unventilated hospital wards, and there were no fridges to keep things cool. Do I sound moany?). Often there would be a huddled group somewhere, with the tight shoulders, the strained look around the eyes, the hushed and anxious tones, and I would know that tonight it was someone else’s turn to take their place alongside us for a season in hell.
But here’s the thing. I came to understand the inherent normality of what was happening to us. It’s far from unique. Looking about me as I moved around the building, I knew our story was being replicated in different forms, some much, much worse, around the hospital, around the city, around the world, by millions of families. We were nothing special. Weeks later, while we were still in the Royal Free, Edwyn found his flow one day and said to me: ‘Suffering is ordinary. Suffering is the understanding.’
He knew, too.