The long, dark night

I can feel my bladder filling, slowly but surely, from the liter bag of Hartman’s fluid that’s draining into my vein. I’m managing to sip water, and take the odd longer drink with medication. When the pain builds, my head aches and becomes the focus, but it’s certainly changed in form and position. I described it as a kind of tailed carapace, covering the solid mass that materialised as the generalised brain swelling abated with dexamethasone. The back edge of the carapace is still there, but it feels as though it’s been rained on, rubberised and lightened; stretched and rippled and extended so that the point leading down the right side of my neck is now flopping and dripping slime from the tip. The top part is dissolving, stranded stickily into my hair like snot. It’s yellowy-gold. I think of the wicked witch of the west and the washing up water. My magic fentanyl dissolves it to transparency, while the throb beneath dissipates in sympathy. Then the vomit gargoyle starts to stir, volumising just enough to grow hands that creep up inside my gut, hovering and waiting.

You can’t go in here, this is the ladies’ bay.

Well, I’ve got to haven’t I?

No, you’re fine and we’ve got it all covered. There’s no need for you to come in here at all, let’s go back to your end shall we?

But what if there’s an emergency, that’s the thing. That’s when you just got to. Nothing I can do about that.

Pasty-white, shadow eyed face in the strip lighting from the hallway, slack mouth, troubled, agitated. He’s standing there about ten meters from me, in the doorway. Binu is there too, she tells him firmly but calmly that he has to go back. The other nurse holds one hand against his upper arm, and steers him round, back down the corridor. His face peers back at us, over one shoulder.

Binu brings me the big bed pan, and I tilt back up to about 80 degrees, while my vomit gargoyle stretches and stands. She leaves me to try but I seem to have some stricture whereby nothing will pass. I’m starting to belch a little, as gargoyle readies himself. I try to take the fear, breathe it gently in and loose it, but it’s cemented in.

I sit on the side of the bed, very slowly, and wait for everything to settle, then Binu helps me to the commode. Once she’s sure I’m stable, she leaves. The positioning ought to do the trick, but it’s not. I concentrate, hear the tap again, and try to relax it out. Now I feel the vomit rise, press the bell and Binu helps me quickly back onto the bed just as my knees start to tremble,

There might be an emergency though? What then?

But you don’t need to worry about that do you? I told you already we’ve got that covered. Come on back with me, this way…

Binu and I talk about the catheter. She goes to fetch the bits she needs.

I feel for the others in my bay, with me causing a commotion and the troubled male patient, whose brain is producing this wraith and sending him on an imaginary mission that he doesn’t understand, that can’t be explained,

Brain injuries are both fascinating and frightening. I’ve seen so many over the years, whether from medical events such as strokes fitting or trauma; or degeneration from dementia; or as transient manifestations of physiological problems when the brain loses its supply of oxygen or glucose. Now I have my own experience of the difficulties in understanding what’s happening to you as your conscious mind tries to make sense of the mayhem and explain a course of action that will seem crazy to others.

I remember she had been talking to a neighbour when it happened, had been complaining of a headache for a few days. It was hot, so she put that down to the weather. Then she began to talk nonsense, banged her fist on the back of her head, vomited, wet herself.

That’s a classic presentation of the thunderclap headache, usually at the back of the neck and head, caused by a subarachnoid haemorrhage. It’s a bleeding stroke from the main circle of arteries that supplies the brain and which can develop a small bulge or aneurysm, that either bursts or begins to leak. It will often bleed profusely into the cranium, raising the pressure and slowing the brain’s blood supply so that it starts to die. That causes a cascade of swelling and further trauma.

She was sat in a chair, combative and agitated. I crouched a little away from her, and asked she had any pain.

Pain? Aaargh, She’s banging and slapping the back bulge of her head.

Who the fuck are you? Why are you here? Fuck off out of it.

She stops, turns her head and gives me a vicious glare, projectile vomits and slumps. My student and I leap together and pull her up on the chair, one either side, manually clear then suction the vomit using the pump our ECA has fetched from the ambulance. We open her airway as she starts to grab, push, slap and fight us. We back off. I try to calm her, ask her partner to talk to her. She’s a strong and fit woman.

Husband starts to cry, he’s halfway through the story of what happened.

June, we need to take you to hospital, will that be okay?

Fuck off who the hell… Leave me alone! Who the fuck are you, bitch!

She’s never like this, never, she wouldn’t speak to you like that. June’s husband says. What’s happening?

I know sweetheart, it’s not her. I think she’s having a stroke, are you happy that she’s not herself, and that she needs emergency treatment? We’re going to grab our chair, pick her up and manhandle her out. We might have to get help, and it might be quite distressing, but we need to get her to the hospital.

Yes, yes, please.

June is now quite drowsy, so we lift her without speaking and pull the strap around her chest and legs as she kicks out.  We trot the wheeled chair out to the ambulance, hanging on as it rocks with her now less coordinated struggles, manage to carry her down the steps in the garden. She flails her limbs, rocks her body and head. We hoik her onto the trolley, strap her down fast, semi-recumbent. She won’t take oxygen, but we cut off her top and wrap her in a blanket so we can get her sorted if she starts to fit. She pushes her hand into my face, and I duck around.

I try to get a cannula in, thinking I can try some morphine and paracetamol for June’s pain, calm her a little, and also have vital access for if she starts to fit which is a significant risk.  But once she notices she rips it out with a spray of dark red across the white sheet, like a trail of the berry aneurysms that have caused this sudden illness. I talk to my student about cannulating during a seizure which isn’t easy, but we might be able to do it. We’ve got the kit ready, and plan our actions. We get the drugs out, and also prepare some rectal diazepam which might be tricky, and is slower, but it might yet be the best option if we need it. You can try, but you can’t always prepare as you’d like on the road.

We drive blue lights, husband calmer now, and chatting in the front with my brand new ECA on his third ever shift, and me and my first year student paramedic in the back. June’s level of consciousness is falling, slowly but surely. We ask her questions, try to assess the exact level of response and note it using the GCS. and suddenly one eye droops strangely beneath the left eye and over her cheek, forming three long lines of droop . I ask my student to assess her pupils; that one has blown, a sure sign of raised intracranial pressure. We sneak a cannula in.

We’ve already called ahead, at the start of our 30 minute journey. Just as we arrive, June wakes, rips out the cannula and says:

Hello, who are you?

Hello June. I introduce us. Do you know what’s happened?

No, why am I here? Oh god have I wet myself?

I tell her that I think she’s had a stroke, that it’s all under control.

I’m so sorry, how embarrassing. I’ve made such a mess.

June, no you haven’t. You’re not well and this is what we do. You’re a very nice patient indeed. June’s pupils are now equal, and reacting normally to light. Astonishing.

So this is June, the usual one. Not the combative, cursing, angry woman, but a polite and considerate one with a kind smile. You never know when you see someone acting like June had been. Drunk? Drugs? An arse? All too easy to judge. And yes, nine times out of ten it probably is one of those things, but one out of ten it isn’t.

We push June into resus, the time-critical area for patients in need of the works when it comes to ED care. It’s busy and the doctors are tied up, so I hand over to the resus sister, explaining the history and neurological signs in particular, along with the fluctuations in consciousness and June’s observations. Her  systolic blood pressure is rising, which we don’t like.

Then whop! She’s fitting, a full blown tonic-clonic seizure, blown left pupil.

I run to grab a doctor who arrives to see it, we’ve got another cannula in and June gets the drugs she needs.

In the early hours of the following morning, we took June as an emergency transfer to Derriford. On the way she deteriorated rapidly and fitted, then displayed Cushing’s Triad – signs that tell you she’s in very serious trouble indeed. Her blood pressure rose to 300/120, her heart rate dropped to 30 and her breathing became erratic and sighing. We gave her diazepam to stop the fit, got a reasonable airway and bagged her because her breathing was not effective, and we needed to keep her oxygen levels good. My brand new ECA got 103 mph out of the old Renault ambulance coming down into Plymouth on the A38.

I met June and her husband almost a year later while I was on standby in the car – there was a knock on the window, and there they were. I didn’t recognise them at first. June was doing well after neurosurgery and months of intensive, specialist care and rehabilitation, but she had lifelong consequences both physically and cognitively. I noticed most that she was a friendly, humorous woman one whom her husband said he was recognisably June in many ways, with some key differences. There are many stories like June’s, but not all of them end positively by any means. Such a devastating potential.

So here I am on Moorgate ward, meeting someone who’s slightly freaking me, and remembering those jobs I did where I was witness to the event that kicked it all off. It’s so distressing to see, probably more so if you don’t understand what’s going on in that person’s head. But imagine being them and know that they don’t understand what’s going on either.

Binu appears with the catheter and unpacks it. It goes straight in and within a couple of minutes I’m feeling relieved. There is an odd sensation of needing to wee because of the catheter, but no pressure. I quickly adjust and am able to doze for a while. I think it’s about 3.30. I wake to nausea, sip some water. I’m given a clexane jab subcutaneously to prevent blood clots.

Finally, finally, grey light begins to seep beneath the blind. It’s so hot and dry in the bay that it leads to a kind of conflict where I can’t quite imagine being cool or hydrated ever again, despite the coolness of the light seeping in. Someone has opened the window a crack as the main light comes on and the day staff arrive.

I’m given more tablets, I think I get another anti-emetic. Of course I now have bottom blocking recurring too. I tend to spew words and thoughts, and vomit after anaesthetics; I’ve always been vulnerable to norovirus and its friends, yet in a crisis when everything else continues to flow I can’t empty bowels or bladder. In cod psychology terms that’s got to be odd.

The nausea has shrunk and intensified to one of those tiny, eroded gargoyles latched with claws into the very pit of my stomach.  A sneering, leering creature, lichened over time and pock marked from centuries of acid.

Morning Lynne, some breakfast?

It’s a flashback to the Burgh Island Hotel – an eastern European accent with a smile and a brisk efficiency. I try wholemeal toast with a scraping of butter and marmalade.

I chew a tiny piece, and swallow. Nothing. I try another, and again nothing. By the time I’ve finished the slice, I feel almost human. The nausea gargoyle has gone, buried under a heap of toast crumbs and carapaced with marmalade and butter. That makes me feel a whole lot better.

The nurse asks about pain. I think it’s fine now, I don’t need the PCA for sure.

I’ve not used it much anyway, I say.

Ah, well, 26 times actually…

Really?!

Maybe that’s why you felt sick?

Maybe, but the long, dark night is over. It’s a new day, the day after Operation Hunt Saboteur.

 

 

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Neuro recovery

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Lynne, Lynne, open your eyes…

Blurred voices, fragments of images, something metal going around.  A pull in my throat, raw. I want to cough, but it’s too sore.

 Have I had it done? Have I? Hoarse.

Yes, Lynne it’s all done, you’re in recovery.

Crying I feel like crying. I feel sick. There’s a pain in my head, sore, aching, in the place of Hunt but not the Hunt pain, a more intense but less palpable pain.

Lynn, the nurse. Kind, soft voice, smiling.

Do you have any pain?

Yes, in my head. I’m going to be sick.

The PCA button is orange, glowing, I press and hear an odd noise. It’s working, and the pain throb in my head eases. I ask for ondansetron because I’m fixated on it now, my trusty anti-emetic. I’m given a tiny sip of water from a plastic cup, through a black straw. Black is a bit S&M for a straw. The water eases my throat, the raw feeling cooled, but then I feel it pooling in the pit of my stomach.

Lynne, I’m going to ask you some questions. Who’s the prime minister?

David fucking Cameron!

There are titters.

What’s the day today?

Um, Wednesday.

What’s the date?

Something of March.

And the year?

2015, 16…

Lynn still laughing, shines a torch into each of my eyes.

The man next to me is agitated, upset, trying to get up. I see Lorenzo the anaesthetist’s hat bobbing as he sorts him out; they try to calm him, to talk him down and explain, but he’s uncontrollable so eventually they administer a sedative.

I’m really fixated on vomiting, sure it’s going to happen as it has after the original wide local excision for breast cancer, and after the bilateral mastectomies, and then after the partial thyroidectomy in October 2014 when I spent the night being given anti-emetics and pain relief orally, and vomited it all up each time. That night hangs over me like the shadow of death.

The BP cuff inflates, hard on my arm, and Lynn looks at me. I’m desperate for a pee, feel the pressure mounting.

Let’s try the bed pan, do you think you can do that?

Yes. I don’t feel I can do anything, but I need to pee so badly.

She sits me up a little more; post neurosurgery I’m supposed to be semi recumbent at a minimum incline of 35 degrees, so I’m sat up now to about 50. I feel the pressure in my bladder increase if that’s even possible, while the pressure in my stomach rises in sympathy as the vomit threatens to well. I lift my bum, feel the sharp edge, I’m sure I’m going to vomit.

Someone gives me an anti emetic, I think it’s swallowed but it’s a blur.

Lynn has already closed the curtains, and she tells me she’s going to leave me now; the whoosh and tinkle of water as she turns the tap on outside does nothing but increase the urgency. The wee is right on the edge, pressing out, almost relief but…it won’t come. I try to breathe, relax, feel the nausea switch in. I try to push, then relax, but it won’t come.

I can’t do it Lynn. The bedpan is hard under my bum, another annoying pain. Nausea hangs, spreads, drops back to the pit of my stomach. Clamminess breaks on my forehead, and I feel the ache from my skull. I press the PCA, the drug flows in and I try again, but that’s somehow made it farther away. The pain in my head has gone.

It’s ok, let me speak to Lorenzo… She turns away. I stare across the way, there’s a footballer over there and they’re talking about the good old days of Argyle.

Yes we can do an in and out catheter, how’s that? Lynn’s smiling again.

Yes, please. All I can think about is peeing, and nausea.

Lynn asks for help, gels the catherter, rearranges the bedpan, pulls out the catheter from its bag. I flop my legs to either side.

Is that it? she asks the other nurse…yes, I think so.

I feel it push in, relax, relax, and then blessed relief. It takes longer than I’d thought, but then it’s all gone, the pressure and the angst.

1000 mls, a litre. The bedpan is full, and Lynn giggles as she carries it carefully away, retuning to wipe and settle me back down.

The nausea remains, I ask again.

You’re not going to be sick, we can manage it. You’re okay. A small sip of water again?

I feel so much better with the urine bomb gone.

There are conversations, I kind of hear but don’t. I see Lorenzo, he talks to me about the tumour, he thinks it looks like a metastasis. He tells me there are things to be done if I do have lung mets, I think I must have asked him but it’s a bit of a blur.

Lynn phones my parents for me, let me tell them you’re okay she says. I’m supposed to stay here till 7, think I got here about 5, but the ward won’t let me come up till after 9. There are people all around, each with various staff.

Have a little sleep Lynne, do you think you can?

Later we talk, about Hunt the tumour, and about her husband, and good pubs on the moor with walks, and my swimming. She tells me Lorenzo has horses.

That kindness, that exchange of confidences, that willingness to accept my crankiness and fear channelled through the vomiting phobia it’s become, have bonded us. I know what’s happening in my head, but I can’t seem to control it at all. Lynn understands. Fear of not being able to wee adds to my list of foibles now, and I remember taking ages and going into a full shake on the commode the last time, then fainting on the loo. I’d kind of forgotten. Displacement.

Lynn arranges with Lorenzo that I can be catheterised later if necessary, and that’s written down so I won’t get into the situation where there’s a problem. She tells me another nurse remembers me from last time, when we talked about wild swimming. I’m becoming a Derriford recovery regular…

Finally at about 9.30 I’m wheeled up to Moorgate Ward. There I meet Binu, a nurse I’d seen a while ago when visiting my friend Linda on the ward. Binu can’t do enough for me. I get ondansetron IV, feeding my rather prosaic anti-emetic habit, and more water. She’s one of those people who’s self-contained, but she has a quietly cracking sense of humour and we hit it off at once. How kind she is, how tolerant of my fretting. Two gems in a row, must be a pattern forming here.

But I know I’m in for a long night.