In Every Moment We Are Still Alive Read online

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  The consultant stands at the head of the bed and the obstetrician monitors Livia with ultrasound. Darling, I’m not leaving you, but I have to get home and pick up a few things. It’ll just be tonight then I’ll be straight back and stay with you the whole time. She looks at the door, then at me. Your parents are in the corridor outside, I say. She shakes her head. They understand, darling, don’t worry. I told them you want to name her Livia. She makes a thumbs up. I stand by the washbasin. Karin moves her mouth. I don’t hear her, but I can see that she’s saying goodnight. Goodnight, darling, see you later, I call out. The consultant puts his hand over her mask. It looks as if he’s injecting something into a valve attached to the oxygen tube. Karin’s eyes close. The consultant counts out loud while checking his wristwatch: One, two, three, four, five. He is still going when I walk out of the ward. I get as far as the lifts before turning around and running back. The door to the ward is locked. I ring the bell. One of Karin’s intensive care nurses opens it. Did you forget something? Yes, I say, pushing past and hurrying into Ward B. Is she sleeping, I ask, is everything going to plan? She’s sleeping, everything went well, the obstetrician answers. Okay, thanks, I say, stroking Karin’s ear. She’s dark blue and bleeding slightly around the catheter in her arm. Will they start chemotherapy tomorrow? I don’t know, you’ll have to ask the haematologists at Karolinska about that tomorrow, says the consultant. The blinds are lowered but a little ventilation window is open, and through it I can just make out the slope down to the water across Årstaviken, the green and red navigation lights of the boats. I look around the ward. In the monitoring section sit the three intensive care nurses and an assistant nurse. They fall silent as I approach. Have you seen Karin’s jacket? I ask. The assistant nurse walks over to a wardrobe. You mean this one? Yes, exactly, thanks. Go home and get some rest now, you have to sleep. Yes, I will, thanks, I just want to make sure you have my number. The assistant nurse, who has thinning purple-dyed hair, turns to the computer and reads out my mobile number. That’s right, thanks, I say. I’d like you to call me as soon as you know when she’s being moved to Karolinska. We’ll do that, she says. Okay, thanks, I answer.

  Lillemor is waiting by the pond outside the main entrance to the hospital. She’s looking down at her reflection in the water, one hand on her stomach, making small, caressing movements. Now and then the hiss of a car can be heard from Ringvägen, but apart from that it’s silent. The taxi will be here shortly, says Sven, tucking his mobile into his inside jacket pocket. What’s the time? I ask. Just before four, he answers. In the taxi I hug Karin’s puffer jacket. I lean my head against the cool window and look out at the asphalt, the gutters, kerbs, pavements, and traffic islands. Before I get out by the steps to Lundagatan I say: It’s going to be okay.

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  Mum parks the car at the bus stop outside Karolinska University Hospital in Solna, I jump out, she calls out but I don’t hear what she says, I run inside to the information desk, a woman gives me a map and points, I sprint through the lobby along a twenty-metre-long corridor leading into a hall, past a shop, two bed lifts and a stairwell, turn right and run through yet another automatic door into a corridor twice as long and across an inner courtyard, I share a bed lift with two doctors wearing surgical caps, I get out, run through the stairwell, follow the arrow-shaped sign for Central Operations, I pass an open steel door and some green pillars, I run across a garish green plastic floor down a forty-metre-long corridor ending in a T-junction, I read the signs, I hang a right towards Central Intensive Care and run alongside some windows, on the right is the hospital park, walls of white fabric, I run down a hundred-metre corridor, I stop by a video entryphone, signals ring out, I look into the lens. A man’s voice: Good morning, what can I do for you? Hello, my wife, she’s come by ambulance from Söder Hospital, she’s pregnant, she’s having an emergency caesarean. At Central Intensive Care? he asks. Yes, F21, I answer. What’s her name? Karin Lagerlöf. Wait a moment, he says. After a few minutes the automatic doors open. The doctor is tall with dark, slicked-back hair, and wears a white uniform. He introduces himself but I’m only really conscious of his eyes, which never want to look directly at me. He says my wife has just arrived and they’re installing her in Room 1, which is a single room. He emphasises that he doesn’t know anything else. Who does know, then? I ask. As soon as they’ve got her installed you can talk to someone who knows, he answers. Is she okay? They’re installing her now, as soon as that’s done we’ll come and get you, he says and walks past me into the corridor. He keeps his eyes on me, so I follow him. Do you know about CIC? he asks. What do you mean? He punches in a code to open a door and says: At CIC we treat patients who need extra-intensive care. We have thirteen beds, specially trained doctors and nurses. He turns on the light. Right, okay, I answer, and peer into the room, which is about twenty metres square. A sofa, chairs, an armchair, a round table, and a simple kitchenette. Not exactly the Waldorf-Astoria, he says, but better than nothing. When is the caesarean being done? I ask. Unfortunately, I don’t know, your wife has to be stabilised before anything can be done. How long will I have to wait in here? Difficult to say, maybe an hour? I really don’t know, but you don’t have to stay in the family room. It’s fine, thanks. Okay, he says, and leaves me at the door. A TV is suspended from the ceiling. There’s another room adjoining the bigger one with a bunk bed and a small toilet. The translucent curtains are drawn across the window facing into the corridor. Abandoned coffee cups. A waste paper basket filled with scrunched-up tissues. I sit at the table. There’s a plastic yucca plant in front of me. Someone has pressed a bit of chewing gum onto one of its leaves. I decide to head back into the corridor but realise that the door has a combination lock. They haven’t given me the code and I don’t know where else I can wait, so I just stand in the doorway. A doctor emerges from CIC. Excuse me? I say. She glances at me but strides past. I call out to her. She stops and turns around. Do you have the code to the door? Don’t you have it already? No, they let me in but didn’t give me the code, I answer. She gets out a little notebook from her top pocket and flips through the pages. Twelve twenty-one, she says. Okay, that’s the year and the ward number, I suppose? Never occurred to me, she answers. That’ll help me remember it, I say. She blinks, and says with a knowing glance: Is it your wife who’s pregnant? Yes, she’s pregnant, I say. She comes closer. If it weren’t for the wrinkles that appear around her eyes I would have taken her for a teenager. She’s standing right beside me when she says: I’ve got a girl myself who was born a month and a half premature. You should be glad it’s a girl, premature girls have a better chance than premature boys of surviving and avoiding any long-term damage.

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  Mum buys me a salad from the hospital shop. The machine-peeled prawns are drenched in Rhode Island sauce. Go easy, you’re wolfing it down like I-don’t-know-what, says Mum. I’ve never changed a nappy in my life, I say. You’ll manage it. Even your father managed it, she says, standing up, looking at me and adding: Sweetie, what’s the matter? I think I left the hob on, I answer. No, Tom, that’s what you thought yesterday, but it wasn’t on. I’m positive I forgot to turn the fucking thing off this time, though. Sweetheart, yesterday I dropped everything and bolted round to yours, and it wasn’t on. What do you want me to say? Do you want me to go and check again? Maybe it would be best, I say. Mum turns abruptly towards the door just as Sven and Lillemor arrive. She adjusts her cardigan and says: Lillemor, Sven, I don’t know what to say. They hug Mum and ask how things are with Thomas. Not good, answers Mum. They are silent. Mum seems to become nervous, as if she’s said the wrong thing. You found it, I say. It wasn’t very difficult, you gave us good directions, says Lillemor. Mum can’t get the TV on, just fiddles with the remote control. Lillemor asks if I’ve managed to see Karin yet. No, they’re installing her now. Installing her? That’s how they put it, I say. Mum starts leafing through the pa
per, her reading glasses hanging by a cord around her neck. Mum, can you even see anything? It doesn’t matter, she says, then adds: Do you still want me to go home and check the hob? No, forget it, I’m probably just being neurotic, I reply, and walk out into the corridor; I keep walking until I find a bench. A doctor speeds past on a kick scooter. What would Karin have wanted me to do if she could see me sitting here? I scroll through the telephone numbers of Karin’s closest friends, Caro, Johanna, and Ullis. Hi, it’s Tom, have you got a moment?

  When I return, Sven is leaning back on the sofa, reading on his tablet, Lillemor is rummaging around in her handbag. Bisse said she’d go back and check your hob, she says. Okay, but I did tell her she didn’t have to go, I answer. Måns is on his way, she adds. What, from Örebro? Yes, he’s coming on the next train, she answers. I sit on one of the chairs. A doctor came by, says Sven. What did he say? Karin’s readings have stabilised now, they plan to do the caesarean this afternoon. Okay, that’s good, thanks, but in future I want all information to come to me first, if that’s okay? You weren’t even here, says Lillemor. No, but that doesn’t make any difference, this is how we want it. We? she exclaims. Me and Karin, obviously. Right, but he came here asking for you and you weren’t here, and we thought it might be important. Okay, so I’ll run through it one more time, this is something Karin wanted, info to me first, that is me and Karin, and by the way we did talk about this only yesterday. A knock at the door makes Lillemor jump. Sven, she says, and looks at him expectantly. He stands but I’m already at the door. The nurse is shy and tries to smile as she asks: Are you all here with Karin Lagerlöf? Yes, is the caesarean being done now? I ask. No, not yet, I just wanted to say you can come and see her if you’d like to, and meet the doctors in charge. I look over at Sven and Lillemor. Tom, you go, we’ll wait here, says Sven.

  Only when the nurse opens the door to Room 1 do I stop, I look down at my hands, spread my fingers wide, and try to remember Karin’s face, but something about it is unclear to me, parts of her are missing, and I have an unpleasant sense of not having seen her for many years. Are you coming? asks the nurse, who’s standing by the open door. I look up: first I see the oxygen tube, light blue, looking like part of a toy as it hangs down between Karin’s oxygen mask and the respirator, which makes a recurring crunching sound as it synchronises with Karin’s rising and sinking chest, then I realise that Karin is naked, only a small blanket over her breasts and lower abdomen; I can see between her legs, where they’ve shaved her, a catheter hangs out of her urethra, and her eyelids look glassy. Come in, says the nurse, unfolding a sheet, which she tosses over Karin’s thighs. She pats her hand and says: I just told your wife you’re going to be parents. She already knows, I answer. I mean you’re going to be parents today, soon. Yes, okay, thanks. She fetches a stool and puts it by the bed. I sit down. Another nurse is standing there, fiddling with the infusion stand. A doctor sits in the corner of the room tapping at a computer. Outside the window on the other side of the street a brick facade rears up, three windows in line, pitch-black foundations. I recognise the building. Is that the Cancer Research Institute? I ask, pointing at it. That’s right, you know it? Yeah, my dad’s been going there for check-ups for the last ten years. Oh, right, she says, standing next to me, also looking out of the window. Lovely spring weather, I reckon I’ll have lunch in the park today, she says. The doctor has a pointy face, brown hair, a straight fringe, small rectangular glasses. A limp handshake. He seems shy. John Persson, he says, I’m the senior physician here at CIC, ultimately I’m in charge of Karin’s time here at the intensive care unit. Okay, my name is Tom, I reply. Is it just you here, Tom? Well, I’m the next of kin, or whatever you want to call it. I was under the impression that Karin’s parents were also here? Karin has stated that she’d prefer to have information come to me first, and then I’ll relay it to parents and friends after that, I say. Right, that’s good to know. I suggest we sit down and talk to the haematologist right away, he’s the one who’ll be handling Karin’s treatment; the obstetrician delivering the child will also join us. Okay, sounds good, do you mean right now? Yes, unless this isn’t a good time? No, no, thanks, it’s fine. He walks very slowly across the corridor into a sort of office he refers to as the Atlas Room. Computers, printers, a bookshelf with medical books, and a stack of blank paper. The haematologist is already waiting for us there, he finishes off a call on his mobile and introduces himself as Franz Callmer, professor and consultant at the Centre for Haematology. Thick and tangled grey hair, wrinkled throat, friendly eyes. In addition to Persson and the haematologist, a junior doctor sits on one of the desks, his hands in his pockets, and an anaesthetist is leaning against the doorpost, chewing gum. They explain that the junior doctor is part of the Room 1 care team, and that the anaesthetist will be administering the anaesthetic during the caesarean operation. We’re also waiting for Agneta, says Persson, she’s the actual surgeon, but I think we can get started. I sit on one of the office chairs and look down at the fabric, light blue denim. Persson continues in the same calm voice: Tom, your wife is very seriously ill and is deteriorating rapidly, which is why we’ve decided to go ahead with the C-section. The child is well, it’s Karin we’re worried about, or to speak plainly, she’s the one we need to get through this, and the slightest intervention has a measure of risk attached to it. It seems that Karin’s internal organs aren’t managing to work as they should. The intensive care situation is critical for a number of reasons, the most obvious of which is that she can’t oxygenate herself, also there’s the imbalance between blood flow and blood pressure in her body, and her lactate is at fifteen and rising, which is extremely high for a person at rest. The haematologist interjects: That’s the sort of reading top athletes have when they’re straining to the point of collapse; normally if we’re out for a walk we’ll have a lactate of one or two, so it’s an understatement to say that Karin’s body is exhausted. What does that mean? I ask. The haematologist answers: Well, what it means is your wife is pregnant and gravely ill, there’s the lactate reading, as John said, and the imbalance between blood flow and blood pressure, which seems to hint at sepsis, I mean blood poisoning, but we aren’t going to speculate. Certainly Karin’s general condition is a result of her disease. He’s choosing his words carefully. I want you to be as honest as possible, I want to hear everything now, I say, and I notice that the haematologist is getting a little irritated by the way I’m swivelling on the chair. Of course, Persson responds, we have to be honest with you. Is she going to make it? I ask. Persson rests his elbows on the table and gives me an authoritative look: Tom, we’re working on improving Karin’s condition, but if we’re being honest I can’t deny that the intensive care situation is highly critical, as I explained. Just how critical do you mean? We’ve got the ECMO Unit on standby, he says. I recognise the name, but no more than that, I say. The haematologist answers: ECMO stands for Extracorporeal Membrane Oxygenation, it’s a heart and lung machine, we have a unit here at Karolinska specialising in the care of patients on ECMO, and while we don’t want to assume the worst and will do everything we can to avoid it, the situation is critical so ECMO is a Plan B, from my point of view as a blood specialist we have to win time when dealing with this type of illness. It’s leukaemia, isn’t it? It is, yes, he answers. What kind of leukaemia does she have? If you stop spinning on the chair for a minute I’ll be able to hear you a bit better, he points out. Okay, sorry, I reply, and repeat the question. He looks down at his white gym shoes, which are long and tightly laced. He mumbles his answer: Well, it’s called C 92.0 acute myeloid leukaemia. He raises his voice: But as I was saying, we have to gain time here, first an emergency C-section, then we go in and reduce the high number of leukocytes—the white blood cells, a product of the leukaemia—and once that’s done, hopefully tomorrow, I want to start the chemotherapy, which will take time, and time is what we don’t have. I put my hands across the back of my head. Tom, I understand this is a lot of information for you to take in, s
ays Persson. A week ago, I say, the doctor at the maternity hospital took a blood test, she said everything was looking fine, and two days ago we were watching a movie together. The haematologist looks down at the table, and answers: It was probably looking fine then, but it’s moved fast. He peers at me and goes on: I can’t even imagine what you must be going through, now you’re going to be parents and everything, it’s just awful. The junior doctor reaches out to offer me a tissue. Thanks, I say, and start rolling the paper between my fingers. Myeloid leukaemia often varies from person to person—in your wife’s case there’s probably a connection between the speed of the disease and her pregnancy—but as John said, what we’re working on now is making her better. I interrupt Callmer to ask if the chemotherapy has side effects? Cytostatic drugs do have side effects, yes, but not like they used to, we’ve got better at medicating against them. Okay, that’s good, I say. It’s worth bearing in mind, though, that even if the cytostatic treatment has the desired effect the risk of reoccurrence is high. Life is going to get tough, with a lot of ongoing treatment, but at least it’s life, he says. Persson adds: But right now we’re here, Karin is in the ward outside, and we’re going to do everything we can to make her well again. He looks up over my shoulder and says: And here’s the doctor who’ll be doing the C-section. A stout woman with a bob of dark brown hair stands in the doorway. She’s panting and sweating. Sorry, I got held up. I assume you must be the father? She steps forward and gives me a firm handshake: My name is Agneta, I’m the consultant at the Women’s Health Clinic. She doesn’t let go of my hand: I’m going to be operating on your wife. The baby is fine but your wife is seriously ill. The operation itself is not very tricky, but given the circumstances it’s obviously a bigger thing, there will be more intensive care staff involved than in a normal C-section, as a safety precaution, but apart from that nothing out of the ordinary. She lets go of my hand. Do you have any questions? She looks at me and waits. I’d really like to be there during the delivery, I say. You’ll be waiting in the room next door, then a nurse will bring you the baby. We’ll have staff on standby from Neonatal, they’ll take care of the baby. Your daughter will be about a month and a half premature; your wife must be in week thirty-three plus a few days. Yes, I reply. Good, well at least you’re a bit more up to speed now, she says, putting her hand on my shoulder and adding: We’ll see you in a moment, Tom. I’m not sure I understand, why can’t I be there in the operating theatre? I ask. She looks at the anaesthetist as she answers: You’ll be in the room next door, there’s a window overlooking the operating theatre. So I’m not allowed to sit with Karin? Family members aren’t allowed in the operating theatre, she answers. I’d rather not leave Karin right now. You’ll be able to see your wife, that’s just how it’s done, she says, then explains that she has to go, she has an operation to get on with. The anaesthetist blinks behind his silver-rimmed spectacles, spits his chewing gum into a bin, and says: I’ll see what I can do, hang tight and we’ll fetch you when the moment comes. Thanks a lot, I say. He nods at the other doctors, then also leaves. The haematologist leans forward as if he’s about to get up: I imagine you’ve heard more than you can process for now, but is there anything else I can tell you? Persson looks at me, waiting for my answer. I peer down at my notepad, trying to make sense of what I have written down.