Bed 12 Read online

  In this new permutation, I resolve that the external form of my hospital retreat will involve getting up at the same time each day (easy, since I seem to have developed an inner clock like never before), eating at regular times, and going to bed at the same time (again easy: midnight!) Another time-honoured technique for helping the mind to quieten itself is to set retreat boundaries, traditionally using marker stones or natural landmarks. I decide that my retreat boundary will be the small triangle of Central London stretching from the South Bank area around St Thomas’ Hospital back to our home, a 15-minute cycle ride to the south-west. I soon find that the remainder of the city with its clamorous bars, restaurants, cinemas and theatres, its busy offices and shopping streets, fades away in my mind like a vintage newsreel.

  Another standard retreat tool is to limit the number of people you speak and interact with, but I decide to let that go. As a first-time visitor to this strange new world of chronic illness I’m keen to meet and learn from as many people as possible. Like many long-distance travellers, I’ve always preferred not to research my destination in advance but instead to find out whatever I need to know as I go along, mostly through conversations with the locals. On this particular journey, I’m also acutely aware of my own fragility: I need to be drip-fed information at a rate that I can sensibly digest. I’m on such an emotional knife-edge that I can’t handle too much at once. This may be why I develop a steely determination not to research Simon’s symptoms online. Instead, one day I take home a gently-written hospital brochure about what to expect from a stay in ICU. It makes depressing reading. Simon has undergone nearly every serious treatment outlined in its pages.

  The ICU consultants are my top sources of information. They turn out to be much more accessible than senior medical staff might be on an ordinary ward, and unexpectedly willing to communicate. On several occasions we’re granted what’s called a ‘family consultation’ in one of the small private rooms just off the ward. I discover that for the best result my brother or another medically qualified friend needs to be present because they can ask more questions, seem to get more candid answers, and can translate any technical language that comes up. It also means that we can jointly examine and re-examine every crumb of meaning and inference in the café afterwards.

  Junior doctors and nurses have clearly been trained not to talk much about the diagnosis but prove an excellent source of clues and circumstantial information. When pressed, they sometimes help me interpret the squiggly ever-changing coloured lines on the beeping monitor above the bed. Simon’s nurses also have the responsibility to regularly type statistics into a computer alongside the bed, and now that I have established myself as a regular I’m sometimes allowed to take a peep at his progress—or lack thereof.

  Unexpectedly, the hospital chaplain is proving to be one of my best sources of information. Simon was originally admitted as ‘of no religion’, presumably because it was an emergency. If there’s ever another time, this will be something to look out for. However a friend and priest who works at one of the other London hospitals alerted the chaplaincy team at St Thomas’ that they had a practising Christian in ICU. Reverend Mia now drops by Simon’s bedside several times a week. With over ten years’ experience in a job that combines pastoral care for both patient and family she’s an expert at explaining medical situations to lay people.

  Mia is the equivalent of the English-speaking café owner that an independent traveller might come across in a small out-of-the-way town. Her special skill lies in preparing me for what might unfold in the week ahead, which up until now has involved breaking extremely unwelcome news. I see our conversations as marking the place where the road either turns a corner or crests a hill. Mia helps me get to grips with the new landscape that lies ahead, initially with a sense of fear and desperation. After that I pull on my walking boots and trudge forward again, because it’s the only option that I have.

  CHAPTER 9

  The human pyramid

  Having no children of our own has both positive and negative aspects. I’m glad I don’t have anyone else to worry about and that I’m in a position to give Simon my undivided attention. On the other hand, if we had children of a reasonable age then I’d no longer be alone: we’d be sharing every up and down, caring with equal intensity, and functioning as a team. And if everything went in the wrong direction then I wouldn’t be facing the future alone.

  Our family and friends are doing their level best to support me, in particular, three men who hardly knew each other beforehand. Philip, the best man from our wedding, has extended his role in the most remarkable way to be alongside me every morning without exception, usually in person but otherwise by phone and text. Philip has also taken on the role of keeping Simon’s trustees and staff team informed about his progress. I can understand their concern and need for information, but I just don’t have the bandwidth to handle this extra task. My capacity to judge and screen what I say is in free fall, and I worry that I could share something too honest or too personal that would later affect Simon’s reputation and career.

  Simon’s brother Tim, who lives 130 miles away in Worcester, is the second person who I can turn to at any time of day or night. It’s a huge relief to feel I can say anything I want to him, because after all he’s known Simon longer than I have.

  The third man is my older brother David, a wonderful brotherly presence for whom nothing is too much trouble, including cancelling almost all his weekend plans to travel from Bristol to London and be with me at Simon’s bedside. He’s a man of few words who is happiest when out in nature, so it’s particularly touching to receive regular midweek cards from him in the post, invariably with an image of a peaceful landscape on the front and the simple words ‘Thinking of You’ written inside. There is one weekend that he doesn’t visit, because of a commitment to attending the Rutland Bird Fair. It later turns out that on that one weekend away he met his future wife.

  It’s purely circumstantial that my three main pillars of support are all male, and sometimes I do feel short on hugs and cuddles, but I’m also wary of the siren call of female comfort and companionship: once I sink into that, I might never get my composure back.

  Simon and I are both in our fifties, and it’s painfully impossible for our two elderly mothers to provide the support I know they long to offer. Simon’s mother turns 90 this week, and while we’re usually very close I find it impossible to share what I’m going through with the woman who gave birth to him. I know she will be sleepless with worry. My own mother is in her eighties and travels up from Sussex bringing me a crumpled brown paper bag of runner beans from the garden and other small gifts within her motherly scope. She takes me out to lunch but changes the subject when she notices I am about to cry. She belongs to a generation that would never have cried in public. It must be exquisitely painful for her to relate to me both as her little girl, for whom she can’t take the pain away, and as the adult daughter who may be in the process of losing her husband.

  It’s clear that it’s only appropriate for a very small number of family and friends to see Simon in his present state, and then only if we can rely on them to be robust and discreet. Earlier this week I watched a man being led down the main corridor of ICU with tears pouring down his cheeks and his face contorted in a rictus of agony and despair. Word went around that a young mother of four was perilously ill and it seemed likely that this was her husband making his goodbye visit. I was unwittingly gatecrashing an intensely private moment, and it acted as a stark reminder that ICU is not for the faint of heart. I wonder if I will soon be in the same state.

  We’re fortunate to have a few family and friends with professional experience of ICU: not only my brother David and Philip’s partner Mike, who are both doctors, but also my sister Elizabeth and cousin Beth, whose practical mix of savvy and plain speaking as former hospital staff nurses is more supportive than they realise. After decades of frontline experience, their view is that the human body is essentially mysterious, with
extraordinary and unpredictable powers of recovery.

  Our friends the Revs Tony and Denise both have extensive experience of working in hospitals and are unstinting with their inside knowledge and support. “Well-meaning advice? Ignore it! Just do it your own way!” says Tony. Sitting in the hospital lobby they encourage me to keep a journal for Simon to read when he comes round, so that he can piece together what happened while he was unconscious. In terms of reading material, Tony thinks that Simon would much prefer hearing what’s in the papers than being read to from the Bible. As we talk, I absently fiddle with a piece of white card that’s lying on the table, eventually screwing it up and adding it to the dregs of an empty coffee cup. It turns out to be Tony’s missing dog collar, which is wiped down and put back on amid much laughter about interfaith harmony and collaboration.

  On their first visit to the ward, Tony and Denise vigorously tell Simon all about their recent cycling holiday. I miss some of the story, but when I ask to be filled in they tell me to get it from Simon himself. On their second visit, they take me out into the hospital rose garden and give me a check-up. Exercise? Sleeping patterns? Appetite? Libido?! At the end, I ask for the verdict. Tony says my ability to listen is a good sign.

  Our friend Sarah texts me to say that she has been having “a few tests” at nearby Guy’s Hospital and would like to drop by. She has just found out that her breast cancer has returned after an eight-year remission. We sit on the landing outside the ward and indulge in an hour of raucous and riffing black humour, each trying to outdo the other with our gruesome medical stories and bad luck jokes.

  There are a few friends who are clearly struggling and I mostly have to leave them to their own devices, knowing that I don’t have any energy to spare. A refugee friend with a devastating history of trauma and loss explains over lunch in the hospital gardens that she finds herself consumed with anger that Simon, who has been one of her major sources of emotional support and encouragement in the UK, is on the verge of being taken away from her. We discuss how her anger at Simon’s illness may be a displacement of her unresolved grief for all the people she’s never been able to mourn.

  I quickly discover the dangers of sharing every up and down with people who aren’t in the daily information loop. They may generously absorb the worst of news—“He’s been in a terrible state today”—and then be left hanging for days until another bulletin comes their way. However, as friends gradually return to London from their summer holidays there’s something very cathartic for me in updating them. Richard and Kasia, who I’ve known for nearly 30 years, sit me down in a nearby bar. “Tell us everything. We want to know the whole story.” It’s a reminder that there are moments in life when it’s the depth and solidarity of old friendships that really count, whatever the divergence in our lifestyles and interests over the years. I feel a tug at my heart as I watch them disappear home, back to ordinary life, while I head back to the hospital.

  Our friend Andrew articulates my situation better than I can: “So every morning you don’t know whether you’re going to see him sitting up in bed or on the verge of dying!” His offer to visit me again, any time of night or day, feels so much more supportive than the people who are trying to fit me in around their other commitments. “Oh dear, we both live such busy lives” says one friend, and another—even worse—consults her diary while musing aloud: “Well … I can’t come over tomorrow, I’ve got a hair appointment.” I’m not in a position to get annoyed, as I could easily have unwittingly said something similar in the past, so I just store this away as a cautionary tale.

  It soon becomes evident that the people who are the most helpful to have around are those who’ve done the most work on themselves. They’re neither needy nor demanding, and are flexible to whatever the situation requires. I can cancel or change arrangements without upsetting their feelings, and they’re completely reliable. In this unknown territory, where the main story is out of my control and I’m constantly at the limits of my ability to cope, the friend who phones or shows up exactly when they say they will is a lifeline.

  CHAPTER 10

  Blue curtains

  When I’m on holiday I try to avoid sending postcards in which the sea is shown as bright royal blue. The sea is a nice enough colour as it is! However either through a sense of humour, a scientifically researched strategy, or supreme indifference this is exactly the colour that’s been chosen for the curtains that hang around each cubicle at St Thomas’. In A&E the first night and now in ICU they represent the scariest sight in the world to me, at which all my philosophising and prayers melt away to nothing.

  The purpose of the curtains is to provide privacy on the open wards. Sometimes they’re pulled closed for entirely benign reasons—to provide a quiet zone for staff changeovers and clean-ups, or for visits from consultants. But at other times they’re drawn to hide emergency procedures, or when someone is dying. Every time I come round the corner by the reception desk in ICU and see blue curtains drawn around Simon’s bed my heart misses a beat.

  For Miranda, the other much younger encephalitis patient on the ward, the blue curtains marked the start of her recovery. I was concerned to find them drawn around her bed one morning but the staff explained that they were in the process of replacing her ventilation tubes with a tracheostomy to allow her to breathe more easily. The next morning she regained consciousness. So when I’m told that Simon is also about to be given a tracheostomy, mid-afternoon on the Friday of Week Two, it seems a step forward and a cause for hope.

  In any other circumstances making a hole in the neck and inserting a plastic nozzle into the windpipe would seem to be quite a major operation, but here in ICU, home of extreme medicine, it’s just another routine task which is carried out at the bedside by one of the consultants. The ‘trachi’ is apparently much more comfortable than having ventilator tubes down your neck, and this in turn means that sedation levels can be lowered. In Miranda’s case, she was out of ICU within a few days. Tracheostomies also reduce the risk of lung infection.

  I am warned there’s a small risk that the operation could go wrong, so as the dreaded blue curtains are drawn around the bed I head off to the hospital chapel. Calm and lofty, the chapel is located at the heart of the original Victorian hospital building and is the most peaceful place I’ve discovered here. It is accessed via a grand wooden staircase hung with the names of past masters, presidents, treasurers and matrons who in a strangely reassuring way date back to the 13th century.

  At the back of the chapel there is a book of remembrance for people who have died in the hospital. One day I come in to find two dark red roses and a sprig from an oak tree on the page that has been turned for the day, held together with silver foil. On another day I find the chapel locked. While I am waiting for the security guards to bring the keys, a paediatric nurse comes by. She has just come off shift, and we have a brief conversation before she turns to leave. “You can pray on the bus home instead,” I suggest. “I pray all the time!” she replies.

  I initially wondered whether anyone would disapprove of me doing Buddhist meditation here, but my intentions are nothing but respectful and I’ve found a small carpeted area at the back where I can sit on a tapestry kneeler out of sight of other visitors. It’s probably unintentional that the kneelers happen to be the perfect height for sitting cross-legged in meditation posture. On this occasion, any pious notion of praying for the safe completion of the operation fades away as I curl up on the carpet in my woollen shawl—just for a moment—and immediately fall fast asleep.

  As soon as I wake, I head down the stairs and along the corridors back to ICU where Simon is lying in bed with the plastic tracheostomy tube safely in his neck. He is now able to close his mouth, after more than ten days of it being forced wide open to accommodate the breathing tubes from the ventilator, and is looking much more comfortable. On closer look, the trachi looks like the nozzle on an airbed. It’s still attached to the ventilator but with much more scope for adjusting the volume
of air and percentage of oxygen that’s being pumped into his lungs and the potential for eventually phasing this out altogether. What a practical, flexible little gadget, loyally doing its work as the latest appendage to my husband’s body.

  Next morning I arrive full of anticipation only to find the blue curtains pulled tight. I wait for about an hour, and then unusually one of the nurses invites me to join the cluster of doctors around Simon’s bed. I can tell from Dr Jones’ body language that our turning point is not going well. Uncharacteristically, he’s using his Christian name. “Simon, my name is Michael, can you hear me? Nod if you can hear me!” No response. Inviting me to join them around the bed is a last-ditch strategy: can Simon’s wife bring him out of his coma? I long to be able to rescue the situation, to be his saving grace, but the answer is no. It’s a bleak and despondent moment.

  Dr Jones explains to me that the medical team will now adopt a more gradual approach. They will cease their daily attempts to bring Simon round on the basis that it’s traumatic for him and fruitless for everyone else. Within Simon’s skull the delicate grey matter which in its mysterious way controls our thoughts, memories and physical movements and hence pretty much our entire life, remains swamped in septic fluid and unable to function. I think of pickled onions in ageing vinegar, and give a shudder. All the doctors can suggest is to wait for a sign that the unknown infection has receded. The inference is that this is an unusually severe case of encephalitis with a much higher possibility than usual of permanent brain damage. Even the nurses seem to avoid my eyes.