A journey nearer a darker place

14.11.2006 | 20:22

Early in the autumn, Lindsay had come for the weekend with Alex, our grandson, and on the Saturday she and Frances went into town for the morning so that Frances could indulge herself in buying all sorts of things for Alex.  Lindsay recalls it as a perfect day.  At lunchtime, I strolled up to meet them for coffee in the Café Americano ; actually, I was asked to meet them for their covert purpose of having me carry all the shopping home, as I’d intended to drop in by the library in the town centre anyway. As predicted, I left Café Americano with two big bags of children’s clothes, gave Frances a quick kiss, left them to do some more shopping, then headed off to the library and home.  Frances and Lindsay came home from their shopping spree, then left for Guildford, for the ice rink, dropping in to the supermarket on the return journey for some sea-salt.

Saturday is usually the day when my weekly photography magazine arrives, so I’d settled down, with the place to myself for the rest of the evening, to browse through its pages.  A short while later, the telephone rang.  I didn’t recognise the woman’s voice.

“Hello, is that Mr MacPhee?”

“Yes.”  I was expecting yet another cold caller to start selling me a mobile phone.

“This is Sainsbury’s in Burpham, Mrs MacPhee has had a seizure in the shop. It’s not as bad as it sounds, but we have called an ambulance, as she fell and her nose was bleeding.”

Everything in the whole world slowed down.

I dashed to my car and drove the five miles, stuck behind a slow moving car on a winding road and knowing that I must not risk any accident that would stop me getting there altogether.  As I reached Burpham and pulled into the car park, I could see the blue lights flashing in the darkness at the shop entrance in the distance.  Frances was already in the ambulance, and one of the staff was holding Alex. I took him, and drove off to the ice rink to collect Ali and Lindsay.  It was close to eight pm when we reached the hospital and were ushered in to a small waiting room.  Frances had already been taken for a scan, and a nurse came to see us, and tell us that Frances had had some bleeding from her nose, but it wasn’t yet certain whether the bleeding was a result of the fall, or the fall was a result of the bleeding.  The longest hour I have ever known crawled imperceptibly by, until once again a nurse reappeared. She said “I think you need to prepare yourselves for the worst.”

How? How do you do that?

Something I find hard to explain even now happened to time. Our married lives together of over thirty-two years seemed suddenly to contract and occupy the space of a week.  And I was being told it was coming to an end, mere hours after kissing Frances, in full health, outside the Café Americano.  I became aware of something I’d never thought of before, that our history, our past, is not merely something that is fixed, but is fed by an artery from the present, keeping it alive.  That present ended, the past becomes fixed and changeless, an object of memory instead of a continuously living thing. I have no words to describe the darkness that came with those words, the sense of suddenly being shut inside a deep black cave, with only a terrible loneliness.  Lindsay began to cry in my arms, saying over and over again “I want my Mummy  back, I just want my Mummy.”

She was unconscious, and not responding to commands. There had been bleeding into the clear cranial fluid bathing the brain. The scan was wired to St George’s Hospital in London, to the Atkinson Morley Wing, which has a world-wide renown in the field of neurology and neurosurgery. The Atkinson Morley asked for Frances to be brought there urgently, and she was transferred there close to midnight.   It must have been around 2am when a consultant came to see us in the small room adjacent to the critical care ward.  Frances had suffered a sub-arachnoid haemorrhage, resulting from a suspected aneurysm, and her condition was serious.
No punches were pulled. He said “people die from this.”  There is a treatment for the condition, he said, but the bleeding has to clear away and the body’s own resources must do this. With the cranial fluid clean, two procedures were possible, depending on the location and disposition of the aneurysm.  The first involved accessing the aneurysm through the skull, cutting a flap and attaching a clip to the swelling in the blood vessel.  The second involved entering a major artery through the groin, and up into the head, to insert a number of microscopic metal coils into the swelling.

By now, Frances was under heavy sedation and the intensive care nurses had been attaching lines into her arteries and veins, and she was breathing with the aid of a ventilator.  She had extensive pulmonary oedema – fluid in the lungs – which frequently accompanies brain haemorrhaging.  There was also evidence of infection in the lungs, which led to further strain on her heart.  And while the lungs had fluid and infection, it would not be possible to consider any operation at all.  We needed to wait, when merely waiting was the hardest thing.

By now, it was around 3am on Sunday morning.  The consultant told us that the best thing to do was go home, and try and get some sleep.  I remember little of the twenty mile journey, and I remember getting into bed in the darkness, and breaking down.  I remember railing at God, telling Him over and over again “she doesn’t deserve this”. I remember being afraid to sleep, in case I dreamed, and I remember waking at around 5am and, for a fraction of a second, thinking that I might be waking from a nightmare, then knowing on the instant that it was still real.

We returned in the morning.  We had to wait in the family room outside the ward, a room we were to become very familiar with.  The critical care ward is locked, and entry is only by an intercom bell, which you are asked only to ring once.  If there is no answer, it is because the staff are busy, and in intensive care, only patients count. We got in after a few minutes, and Jeffrey, her IC nurse that morning, had been re-arranging the drip lines and drug pumps; there were so many that he was having difficulty accessing them and he was lining them up so that he could change syringes when the alarms went off.

I thought I knew what ‘intensive care’ was. However authentic you may think a television drama portrays intensive care in a hospital, it is not like this. In the Atkinson Morley NCCU, there is a desk at the bottom of each IC bed, and there is a nurse at that desk every minute of every hour, day and night. That nurse never leaves the bedside, no matter what private things you may want to say, and every few minutes, there is some activity, whether it is blood sampling, adding a drug to the NG tube, an alarm to check, or the regular neuro observations on the patient, measuring responses to stimuli, in arms, hands, legs, feet, eyes. There is a constant, quiet, humming industry in which every nurse knows what is to be done next. When one nurse needs to go on a break, she signals the nurse on the next bed to monitor her patient.  (I say ‘she’, though there were many male nurses too.)

Jeffrey was always smiling, and though it might seem out of place, he was exactly what we needed to see.  He’d been drafted in that day because of staff shortages, and was expecting to have to return home soon because his wife was pregnant and the baby was due on the Tuesday. “We have two boys,” he grinned, “this time, we think we might have a girl.” Jeffrey, like several of the nurses, came from the Phillipines, and he and his wife lived in Birmingham; yet he commuted to London for days at a time, and to him this made economic sense, and allowed him and his wife to have a bigger house to raise their family. All the time he talked about his family, he busied himself with Frances, constantly talking to her, even though she was unconscious, telling her “Frances, just giving you some antibiotics,” or “Frances, just connecting a nebuliser to help your breathing,” or “Frances, just taking a little blood sample from you.”  Everything was done through ‘lines’; there was an ‘art line’ in her left leg for blood sampling, another in her left arm which connected to a blood pressure and heart rate monitor, another line for intravenous drug administration, a Nasal-Gastro (NG) tube through which liquid nutrition packs were fed, as well as nasally administered drugs.  And there was the ventilator tube, which went down her throat to her lungs and was connected to the ventilator machine.  It had never occurred to me before, but when someone has a ventilator tube, they cannot cough. To allow for this, there is a secondary tube which can slide inside the main ventilator tube through a valve, and is normally held outside, sheathed in a plastic covering. When the patient needs to cough, the nurse slides the secondary tube right down inside the main tube, by twelve to fifteen inches, which causes the patient to react violently even when unconscious; she then connects the end of the secondary tube to a vacuum pump and draws it back out slowly, collecting phlegm along the way. It looks and is distressing, but it works.

I stood beside the bed with Lindsay.  Jeffrey said Frances had had a quiet night, but it was proving difficult to bring her out of sedation, because each time they turned down the anaesthesia dosage, she reacted violently to the ventilator tube in her throat. After an hour or so, he tried again. As the dosage dropped, he called on her loudly, “Frances, there’s someone here to see you, open your eyes.”  Nothing moved.  He called again, louder, “Frances, open your eyes.”  After some minutes, as the dosage eased off, her eyes opened. But they did not move. There was no focus, no movement, no recognition, only a staring emptiness.  I remember thinking that her face didn’t look right – I couldn’t explain it, but it was almost like those pictures you see of someone in the cockpit of a fast aircraft whose cheeks are being squashed out by the acceleration.  I touched her and stroked her face, but there was no response. I went out of the ward even more scared than when I had arrived.

In the afternoon, they made another attempt to bring her round, and reduced the Fentonyl dosage.  I was holding her hand when her eyes opened again, still, as before, unblinking and staring.  I moved my face very close to hers and she stared at me, unblinking. I said “Do you know who I am?”  Very slowly, she nodded her head once.  My heart leapt up inside, but I didn’t want to show anything that would affect her, and I said “Good, I’ll ring Doreen and tell her you are coming round.”  Very slowly again, she made a side to side motion with her head.  It’s hard to explain how much that gesture meant. The consultant had told us that they would not be able to assess the extent of any neurological damage associated with the haemorrhaging until she was able to regain consciousness. Frances has always concealed any illness from her mum, and that gesture meant that not only did she recognise me, it meant she was able to think and reason, and had an awareness of the past. So there was memory.

Within minutes, she began to react again to the ventilator tube, and her hands were slowly moving up to her face to try and pull the tubes out.  Jeffrey immediately increased the Fentonyl level and she fell back into unconsciousness.  This pattern repeated in the days that followed – each attempt at bringing her round had to be ended because of the gagging reflex on the ventilator.  But at least there was a small glimmer of hope.

Some days later one of the senior anaesthetists came to see me.  The most recent scan had shown the location of the suspected aneurysm.  “It is in a dangerous place;” he said, adding “all aneurysms are in dangerous places, but this is in a particularly dangerous location.” Unfortunately, the persistence of the oedema and the lung infection meant it would not be possible to proceed with the coiling procedure, and as long as the operation was delayed, there was the serious risk of further bleeding.

There is a waiting room outside the NCCU ward, the ‘family room’.  We became familiar with this room, and I spent most of the day in it, from early morning till late at night, during those times when I had to leave the ward.  I got to understand the routine:  when I saw the consultants making a ward round, I got up and left; and between twelve and two in the afternoon, I left again, this being a strict time for patient rest and also, they said, a period when relatives and friends could take a rest from the bedside vigil too.  I got to recognise the other faces in the family room, and usually we knew the names of the patients before we knew the names of the relatives and friends.  There’s a strange kind of bond between those waiting in the family room. You know very intimately what they are feeling, and you know that they know how you are feeling too.  I would ask one woman “How is Ken today?” without knowing her own name, and after she told me how Ken’s morning had been, she’d ask me how Frances was, not knowing mine. In the same way, I knew Lucio’s name, in the bed next on the right to Frances’s, before I knew Paula’s name. I still do not know Lucio’s sister’s name, though I talked to her even more than to Paula.  One day, I was talking to Paula about the surgical procedures which were being outlined for Frances, as these were likely to be the same options for Lucio. So I told her was the anaesthetist had told me: one, the more invasive, in which a clip is applied to the aneurysm through a hole cut into the skull, and the other, less invasive, in which a fine catheter is inserted into an artery in the groin and pushed all the way up the artery into the brain. At this time, the scan having been conclusive, I said to Paula “Frances is having the less invasive procedure, once her condition is stabilised.” There was a young woman sitting on her own to my left.  She said “My David is having the other one. They’re having to go in to his head.”  I kicked myself inside for my unintentional thoughtlessness. It hadn’t occurred to me that this inherently more dangerous procedure might have been prescribed for someone else.  David had collapsed in the bathroom of their house, striking his head as he fell, and was found by their youngest of three daughters. David’s scan had shown that his collapse was linked to an abnormality in the shape of an artery in his head, which was showing as wide and flattened, and would not respond to the internal coiling procedure.  From then on, I learned to be more careful with my words. Throughout the time that followed, story after story passed through that family room, all of them dramas that no fictional portrayal can match.

A few days of continued unconsciousness passed. It was still proving difficult to bring Frances round. As before, she was gagging on the ventilator tube, sometimes so severely this time that she was vomitting, which is an added danger for someone who is unconscious. When a patient vomits, the nurse has to act quickly, taking the vacuum tube from the ‘cough tube’ and connecting it to a another tube which is used to quickly remove as much as possible from the mouth and throat. Jeffrey was now off duty and at home in Birmingham, his wife due to give birth imminently, so Frances’s nurse in the early morning shift was Lala. Her real name was Lallaine, but everyone called her Lala, including the other nurse whose real name was Lala. They usually got called Lala One and Lala Two. On one occasion when Frances vomitted, she was coming out of unconsciousness at the same time as the nurse was vacuuming up from the back of her throat. The touch of the suction tube caused another gagging and yet another vomitting event. Whenever this happened, Lala had to completely clean her, and I would leave while the bed was curtained off for privacy.

I spent most of the day beside Frances. The routine was to rise at around seven, drive the twenty-two miles to the hospital in time for the early morning visiting period. I would stay for an hour or two, then there would be a break, either for the ward round or because the nurses needed to do something with the privacy curtains in place. In the evenings I stayed by her bedside, until late at night. During these evenings, there was little to do but wait and watch, and with nothing else to do I became familiar with the monitors and screens and all the apparatus of critical care.  The coloured graphs which at first made little sense, began to make more and more sense. Sometimes, I worked out what the numbers on the syringe pump displays meant. One figure was obviously a dosage rate in ml per hour, but the array of time figures made less sense until I realised that if I divided the volume of drug in the syringe by the dosage rate, the countdown clock figures must be the remaining time till the syringe needed replacing. And sure enough, when I did the calculation on a nearly empty syringe, the pump alarm came on ten minutes before the predicted end, so that the nurse could start to recharge the supply. The ventilator was easier to work out.  There were three sets of graphs, in green, being re-traced every five seconds or so.  The lowest graph was clearly inspired volume, looking like a light surfing wave, rising convex then falling concave. It varied from 300ml to about 1200ml volume. The graph above this took a little more to work out. It had a kind of sawtooth shape, rising quickly then falling slowly. This, I figured, must be measuring the rate of inspiration in ml per minute, and if this was so, then the first part of the sawtooth shape should line up with the convex rising phase of the graph below, and disappear with the falling concave phase, which is just what it did.  The only measurable left I could think of was gas pressure, and the top graph, with its square-wave shape, matched the rise and fall of the lowest graph. Sure enough, I noticed it was labelled ‘mmH2O’, which looks like a pressure measured in millimetres of a column of water.

One evening I noticed that in the middle graph, the rate graph, the start of each pulse was sometimes traced in purple, with the remainder of the graph traced in green. At other times, the whole graph was traced in green. I began to worry about what these purple sections meant when they appeared. Though I couldn’t be certain, it seemed to me that when Frances was showing signs of disturbance or moving her limbs slightly, more of these purple traces appeared. Reddish colours often signal danger of some kind. One night, when Chris, one of the senior nurses was passing (Lala had been on her break), I asked him what the purple segments meant. “Right,” he began. “You’ll notice that whenever that purple section starts the trace, there’s also a brief purple ‘T’ symbol displayed there (and he pointed to the top of the screen).  Sure enough, when the purple trace appeared, a purple ‘T’ flashed at the top.  “That ‘T’ means ‘trigger’. The haemorrhage that Frances has had is here (and here he pointed to the lower back of his own head), which is an old part of the brain whose functions include breathing reflexes.”  So this was one reason why Frances was on a ventilator – the haemorrhage had a neurological impact on her ability to sustain breathing reflexes. When I began to realise the implications of neurological damage, this became more frightening. He went on, “The machine is set here (pointing to a number on the screen) for a minimum number of breaths per minute. At the moment, it’s set to around twelve breaths a minute. If that doesn’t happen, the machine kicks of the next breath. However, if Frances triggers the breath, this purple ‘T’ flashes and the trace start is drawn in purple. If Frances doesn’t trigger enough breaths, the ventilator triggers them for her.”  So what at first I had thought a danger signal – the appearance of purple traces – turned out to be the opposite, for they meant Frances was taking that breath unaided. This explained why these purple trigger signals appeared more frequently when she was showing signs of some disturbance, and when she was showing rising levels of consciousness as the Fentonyl was occasionally eased off. It also explained why the purple-initiated waves were more erratic in form and often weaker in pressure. But more purple was good.

One day Lindsay said to me she’d like to take some books in to the ward, so that she could read to Frances. Even though she was unconscious, she might hear her voice and the familiar sounds might help her on the way to remembering and consciousness. I told her that Frances had a couple of paperbacks she’d been reading and they were still on the bedside table at home. So Lindsay fetched the books on her next visit, and brought them in to the hospital.  That evening, I sat by Frances’s bedside, as usual, watching the lines being traced out on the monitors, and listening to the rhythmic puff .. puff .. puff of the ventilator. Maggie had arrived to sit with me. Chris passed by to look at Frances’s charts, and said to me “It’s quite hypnotic, isn’t it?” And it was, the machine breaths sounded almost human, and made you feel quite sleepy.  There weren’t many moments of humour in that critical care ward, but as I listened to the drowsy puffs, I saw that Lindsay had left Frances’s book on top of the ventilator, and casually looked to see what it was. It was a novel by Erica James.  Puff .. puff .. puff, went the ventilator.  Then I read the title of the book:  it was called ‘A Breath of Fresh Air’.

One of the things you notice in a critical care ward is the frequency with which alarms go off. When this happens, nobody runs around or jumps up with any urgency. This is not how it is in fictional hospital wards. And at first this seems alarming in itself; especially when you are sitting by the bedside of someone you love and the monitor showing heart rate suddenly ‘alarms’ and the trace falls to a steady line.  Then, too, you learn to read what the alarms are really saying. The first time it happened with Frances, Lala rose from the desk at the foot of the bed and said “Frances, I’m just going to have to move your arm, there must be a kink in the art line.”  There was a canula going in to her arm which was held in place by sticky tapes. This line also measured blood pressure and pulse rate, but if there was a kink in the line, this frequently gave a false reading which went outside the ‘upper’ and ‘lower’ limits which had been set for the alarms to go off. Usually, just moving the arm or adjusting the lay of the cable did the trick and restored the readings.

In the family room were a man and a woman who had just arrived from South Africa. Their son had had an operation while working in England, and something had gone badly wrong. I don’t know what the operation was that Alan was having, but during the course of it, the surgeon accidentally nicked a major blood vessel, and blood spewed everywhere inside his body cavity, flooding major organs in blood. These organs are not meant to be bathed in blood externally, and are quickly damaged by it. One by one, they began to fail, and as he was being transferred to St George’s, his parents had flown from SA. Alan was holding on, but the outlook was serious. His father said that the nicking of the blood vessel was not a matter of negligence, just damned bad luck. He told us such an accident during that operation had only happened on two occasions in the UK, but in each case, it had been fatal.

Ten days passed before Frances was considered ready for the operation.  I was sitting by her bedside when a man appeared. He was dressed in surgical green, with a green cap, and asked me if I was Mr MacPhee.  This was Professor Clifton.  He was particularly direct, and he drew me a diagram of where Frances’s aneurysm was located.  The anaesthetist had not exaggerated. “If this bleed happens again, she will die.” I knew, as I know he did, that even before he began to explain the need for the procedure, that I was going to give my consent. But there was risk in the procedure, too.  “There are some patients who do not survive the procedure. The risk, on average, is around five percent. In the case of your wife, with the complications due to the infection and fluid in her lungs and the resulting strain on her heart, this risk rises to around ten percent.”  Put this way, this risk is not far from that of playing Russian Roulette. Even so, I had no choice. I said “We must go ahead.”  Agnes came forward with what I supposed was a consent form, but Professor Clifton stood up and said “There’s no need for that.”  And that was it.  He said Frances would be third on the list for Tuesday.

I came in early on the following day and spent the morning by her bed again. There was no relaxing in her sedation level, so she did not know I was there, although I talked to her, and touched her arm or held her hand just in case she could feel me.  Early in the afternoon, a nurse came to tell me she needed to put Frances in to pre-op, so I went out into the family room, but I could not sit, so I went out into the corridor by the big windows overlooking the car park.  Sometimes the ward doors opened and a bed would be rolled out, with surgical staff and a nurse following with drips and mobile monitors. At a quarter to two, the doors opened again and another bed came out. I could not see a face, but I knew straight away this was Frances. As the bed was pushed along the corridor I saw her, and everything inside me froze with fear. I wanted to step forward and touch her but I was also rooted to the spot, afraid to touch her in case I disturbed anything from the preparation for her operation. I saw the nurses and surgeons turn down the corridor to the Neurological Theatre and they disappeared from view.  All I remember was holding my hands over my face and sobbing uncontrollably, unable to stop. The risk of the operation itself changed from something just theoretical to something real and being faced, and I was more frightened that at any time I can remember. About ten minutes later I felt an arm slip around my shoulder. It was my sister, Maggie.

We stood together on the same spot for over two hours. I just couldn’t move away. The late autumn sun was streaming through the windows and although I was overheating, I had got it into my head that I would not move and I would not take my jacket off until the operation was over, for reasons I think I understand but cannot explain. I cannot remember much of what we talked about, but I do remember that when I felt most inconsolable, Maggie was there, keeping  my spirits up and consoling me. The unspoken fear was that an unaccompanied doctor would come from the corridor leading to the Neurology Theatres.

At about twenty past four, the IC ward doors opened and a nurse came out.  It was Lala. She said “Frances will be back up in about twenty minutes. The theatre has just phoned.”  She was smiling.  My whole insides just flooded with sunshine.  I took my jacket off.  She said “We’ll need about half an hour after she comes back before you can come in to see her, we need to connect up her lines again, but as soon as she’s ready, I’ll come out and get you.”  It didn’t matter that I’d have to wait, the sense of relief is beyond my ability to describe, all I knew was that nothing serious could have gone wrong with the operation.  Maggie and I went straight into the family room and sat down. I have no idea what we talked about, but whatever it was, I was talking about it with the best sister in the world. It was close to six before Lala came out, but the wait did not matter at all. Maggie said to me I should go in first to have some private minutes with Frances before she would come in, but that wouldn’t do for me, Maggie had stood for two and a half hours with me at my loneliest moment when I most needed someone with me, and she would come in with me to see Frances too.

The completion of the operation was not the end of the risk.  There was now the risk of vasospam to monitor and mitigate, and this meant keeping Frances’s blood pressure relatively high to ensure that blood vessels did not go into spam and collapse.  This risk is highest during the first two weeks after coiling and tails off after the third week.  The breathing tube from the ventilator was also starting to pose a risk. About a day after the operation, one of the senior anaesthetists, Mrs Brown, came to the bedside to have a chat with me. She wanted to take the tube out and carry out a tracheostomy.  The ventilator tube passes down the windpipe and is quite tightly lodged in the voicebox, and there’s an upper limit of around fourteen days beyond which there is a risk of real damage to the vocal cords. With Frances still gagging on lower sedation levels, it would not be practical to bring her round, and without bringing her round, there was no real way to assess the neurological damage suffered from the haemorrhaging. A tracheostomy is an incision cutting a hole directly through the neck and into the throat, allowing a tube to be fitted to breath from the ventilator below the voicebox. Frances could then breath through the ‘trachy’ without the tube in her windpipe, and it would then be possible to bring her round from the sedation she had been under for almost a fortnight. Like all surgical procedures, there’s a risk with this too.  “The main risk is that there are two large arteries close to where the tracheostomy incision is made, and we need to avoid those.” But it was clearly a very routine procedure, so routine that it could be done without taking her to theatre. She wouldn’t be able to talk, as air would not be flowing past the vocal cords, but it would be possible to fit a valve to the ‘trachy’ at a later time which would let her speak by forcing air up through the larynx. With Frances already close to the upper limit for having the windpipe tube, the importance of the trachy was clear.  The anaesthetist said the trachy incision would leave a small scar, and I told her that this sounded expensive, as I could see some jewelery expense in prospect.  She grinned and said “Perhaps something in pearls?” but I feared it would more likely involve garnet, Frances’s favourite stone.

I think it took about twenty minutes to perform. It’s not actually a tube, it’s a kind of flange with a hook inside, and a tube can be attached to the flange and from there to the ventilator.  The flange is further secured by a kind of pad which is anchored to the neck by a couple of stitches.  With the trachy now working, Agnes could reduce the Fentonyl rate and the process of bringing her round could begin.

As the sedation eased off, I could see the increase in the tell-tale purple triggers on the ventilator monitor.  Her eyes opened, and her hands once again moved up to her neck. I asked her if she knew who I was, and she nodded.  She was trying to talk, but no words were coming out, and Agnes tried to explain to her why she wouldn’t be able to speak for a few days yet. Frances was looking all around, bewildered and trying to make sense of things. All the time, she kept mouthing furiously at us, but however much I tried to lip read, I couldn’t make sense of it.  Susan asked “Is there something you want?” and Frances mouthed as though she were shouting at us as imbeciles who couldn’t understand plain English.  Then in one moment I read her lips and I knew exactly what she was saying.

“I .. want .. a .. cup .. of .. coffee!”

It was so absurd that we burst out laughing.

In the family room that afternoon, we exchanged reports on how each patient was doing. The common theme was the recurrence of two steps forward and one step back. Patients had good days, and then a day when progress seemed to be lost again.  Alan was fighting hard, but had begun to show more organ failure, and worringly had now succumbed to septicaemia.  David had not had a good day. The operations had not gone well. “He’s had two strokes,” said Tracy. “Each time they’ve operated, he’s had a stroke on the operating table.” Tracy had not been able to remain in the ward that afternoon, and left, her hands covering her mouth and tears running down her face.

In the days that followed, Frances was able to have more time ‘conscious’, now that she had been able to have the wretched windpipe tube removed, although the continuous regime of neurological observations was taking its toll. Every hour, a nurse would perform the same routine:  pupil dilation check, then rouse her and ask her to squeeze the nurses hands, let go, move the left, move the right, move the left foot, move the right.  If there was insufficient response, the nurse then had to resort to raising the pain level to elicit a response, usually by taking a pen and rolling it hard over a knuckle or fingernail.  If she couldn’t be roused at all, the next step was for the nurse to pinch at a pressure point in her neck, very, very hard, and this usually worked.  The nurses clearly disliked this procedure, which left marked bruising on the patient’s neck.  But these observations, essential as they were, continued throughout the day and throughout the night, and as a result, Frances began to show the effects of sleep deprivation.  Some of these effects were obvious, others were only noticeable by me, knowing her so well.  Sometimes Frances would ask me (or rather, mouth silently at me) to take her to the bathroom, and would try to move her feet off the bed.  When I told her I couldn’t that, she’d look at me as though I were stupid, even though I tried to explain to her that she was connected to around eight drip lines and had an NG tube going down into her stomach.  But there were also periods of lucidity, and these were so welcome.  One of the first things she asked about, after asking for that cup of coffee, was what was happening about our holiday. We had been due to fly to Paphos, in Cyprus, about a fortnight after Frances had collapsed, and she had realised that someone would have had to arrange cancellations and insurance claims.  Sometimes, though, when looking at me, her gaze would begin to wander around the ward, and on some occasions, she’d hold up her right hand at outstretched arm’s length and peer intently at it, moving it from side to side as if trying to peek between her opened fingers.

Although I often had difficulty understanding what she was trying to say, on some occasions we managed to have surprisingly easy to follow conversations as I got better at lip-reading.  Once, I read her  lips saying
“I want to go to bed. Can you take me upstairs?”
“Why do you want to go upstairs?”
“The bedroom is upstairs.”
“We’re not at home, Frances.”
“Whose house are we in, then?”
“We’re not in anybody’s house, this is a hospital. This is St George’s.”

Although she had her one-step-back days, Frances’s good two-steps forwards days were noticed by the others in the family room, for we took much comfort and joy at the progress of others. For each of us, there was an understanding that did not need words, and each of us knew that each of the others knew how we felt, on good days and on bad. Sympathy offered was never a mere politeness.

On these good days, it was easier to leave the hospital and go for lunch, which was usually at the Trafalgar Arms close by.  One day, I had returned, and, walking along to the end of the corridor for the left turn towards the NCCU ward, I saw Tracy standing there, with David’s brothers nearby at the windows.  Her face looked drawn.  As I approached, she nodded to me then said “How is Frances doing? I see she’s been awake today.”  The ‘trachy’ had helped a great deal, I told her.  But I knew, too, that the news about David was not so positive.  I swallowed hard, and said “I think your news is not so good.”  She was struggling to hold back the tears.  “No, he’s got worse. They say they won’t do any more operations on him, they say it would leave him like a vegetable.”  The surgeons had refused to attempt any further brain surgery as the very operations were causing strokes.  That was when she said that the doctors were turning off all medications except the water and air lines.  That to me sounded like the minimum legal requirements.  I wanted to put my arms around her, but it seemed too much of a presumption.  The tears were just coursing down her face.  I have thought of that moment many times, and even as I write of it now, I have a lump in my throat and cannot swallow.  At the darkest moment in her life, she was asking me about Frances, knowing how grim the prospect had become for David.

That afternoon in the ward, we saw the privacy curtains had been drawn around David’s bed.  Tracy was with him, and the two brothers and three children went in shortly after.  We knew that the rule of two visitors to a bed was strictly observed in the critical care ward, and this could only be an ominous sign.  The brother with the long dark hair left the ward quickly, clearly in distress, and the children followed soon after.  Tracy told me he’d gone out and got himself completely drunk.

Later that evening, Lindsay arrived, and we sat in the family room.  Tracy and her two brothers in law were seated in the opposite corner.  One of the doctors, a tall Australian, was sitting on the edge of the small table, talking quietly to them.  The results of the latest scan on David had been received.  Neither Lindsay nor I said a word, but each of us knew that the scene we were witnessing should have taken place somewhere else.  I heard the doctor say, almost in a whisper, “There’s no pressure here, it’s just something you and the family might think about, but there is no pressure of any kind.”  The red-haired brother said “I know what my brother would want.”

We knew what he was asking them.  And I knew why David was having only water and air now. Lindsay said she later saw organ boxes being taken through the back of the ward.

David was just 34.

Alan’s improvement, from having complete organ failure and septicaemia, was dramatic.  Within a few days, he had been moved out of critical care and into the high dependency ward, and in a few more days, was on his feet and walking about.

Frances’s next goal was to be able to get out of bed and sit on a chair. This was no ordinary task, however much it had hitherto been a mundane and unremarkable. First, she had to be able to breathe without the ventilator, which meant weaning her off, first by reducing the oxygen concentration from 60%, gradually, down to 30%, then to an atmospheric concentration of 21%. On the day that Rachel, the physiotherapist, reckoned that Frances was strong enough, she arranged for a wheelchair to be brought to her bed.  The first step was to raise her as far as possible to a sitting position.  I had expected to have to leave, as this meant the privacy curtain was being drawn, but Lala said I should stay, so as she and Rachel and Oliver, the trainee physio, helped Frances swing her feet over towards the floor, I stood in the corner and watched.  Her feet near the floor, the next step was to lower the bed to just the right height to let Frances begin to put weight on her feet. She would not be strong enough to use her leg muscles to rise, but instead had to be in a position to ‘drop’ onto her feet gently.  When Rachel saw she was properly positioned, she and Oliver, one at each arm, brought her to an unsteady upright stand, then, after a few more minutes, into the chair.  Rachel then showed Frances a series of simple exercises designed to work on her leg muscles, like the quadriceps to get her knees working again.  After a few moments, she said “There, we’ll give your legs a rest, we mustn’t push you too hard.”  Frances began to mouth something which no one could understand, so she started gesturing furiously towards the desk at the foot of the bed, so I guessed she wanted a sheet of paper and something to write with.  Lala brought paper to her, and Frances scribbled a note to Rachel, “got to push me too hard”.  She then motioned to me, and began to write down a message for me.  “Go and buy me a kids colouring book and felt tip pens so I can work on my dexterity.” It was too hard not to be choked with emotion, and I gave way.

About an hour in the chair was enough before Frances asked to go back to bed, and it was not difficult to understand how tiring sitting could be, as she did not yet have enough strength to move herself about in her chair in the way we do continuously and unconsciously to relieve the pressure of sitting in just one position.  Later that evening, she asked to be allowed to sit up again. The mere act of sitting in a chair had become a milestone on the road to recovery.

Most of these days have all merged into one in my mind, and instead of remembering individual days, I remember the passage of time by those small milestones.   I bought her the colouring book and colouring pencils. That evening, she asked to get in to her chair again, and set about colouring in the first picture.  It was a picture of a small boat, with portholes in the side and a little funnel on top. She coloured the sea blue, the portholes black, and the funnel red. I have seen boats just like it in the harbour of the small fishing town in Buckie where she was born. Sometimes the pencil strayed from the outlines, but there was a magic about it. When she was finished, she wrote an inscription at the bottom, “To Alex love Mum-mum.”  Alex is our two year old grandson, and he calls her Mum-mum, and me Dad-dad. It is hard to imagine a more precious memento for a grandchild to have.

Frances set her own next goal.  It was the thirtieth birthday of our favourite niece, Gillian,  in December, and ever since the start of the year, we’d planned to go to Kirkcaldy in Scotland to a big family gathering.  I thought it unlikely, and as Frances would have been unable to fly in any case owing to medical restrictions, and the recovery periods from brain haemorrhages ranged from six months to around fifteen months. Susan had sent me a text message saying she hoped to see Frances dancing at Gillian’s birthday party. I grinned, but it was more cheerful than realistic.

In the days and weeks that followed, Frances recovered more and more of her strength, from taking first steps using a zimmer frame, where I’d walk behind her in case she lost her balance, to a walking stick, to being able to walk unaided. Her next goal was to be able to walk up and down a flight of stairs, and if she achieved this, she could come home.  This was an important goal, because there are two flights of stairs between three floors in our house.

Frances came home on the 31st October. For the first few weeks, we had a routine to navigate the stairs where I would walk up behind her when she wanted to climb up, and walk down in front of her when she wanted to descend, and I continued this until I felt confident that she could do it by herself without risk of stumbling.  Each time she wanted to go up or down, she had to call on me to accompany her, leading or following. Once, as we descended the stairs, she put her right hand on my right shoulder, and we went down slowly, one step at a time, I started to sing

#Underneath the Arches, we dream our dreams away

#Underneath the Arches, on cobblestones we lay…

She started to laugh. It probably won’t mean anything unless you knew the old British music-hall double act, Flanagan and Allen.

Getting home was a form of therapy in itself, and Frances ‘s progress, though not without its ‘wobbly moments’, has been extraordinary. We couldn’t fly to Scotland , but we drove there, or rather, I drove, as Frances cannot drive for the moment.  And we danced at Gillian’s party.

I had made myself a promise that when Frances was well enough, I would tell her the names of all the nurses who had looked after her while she was unconscious, names that are etched into our minds forever. Jeffrey, Monica, Florence , Mary, Ranjeena, David, Chris, Miguel, Lala, Sarah, Lallaine, Rachel, Caroline, Anita, and the wonderful Agnes.  These are the nurses who sit by their patients every minute of every hour for each of twenty-four hours every day.  She, and I, have both been overwhelmed by the messages of goodwill from so many people; news of her illness travelled quickly through the British hockey world, and we had cards and messages from people all over the country, and some as far away as Germany. For the first three weeks or so after Frances got home, the house was inundated daily with deliveries of flowers.

We spent Christmas with Lindsay and Dean, and Boxing Day with Maggie and Phil. In the spring, we made the journey once again to Lake Bled, in Slovenia, one of the loveliest places on earth, and walked hand in hand around the lakeside, by the warm yellow light of the waterside lamps, and with the Moon and Venus suspended motionless in the black night sky above the chateau that overhangs the lake.

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