What is Hunt made of…

IMG_1427

My appointment is at three.

Days and weeks swirl, entwine, unravel, knit into new forms.

There was a melt down, and I write that in the passive because that’s how it feels; a passive, dissociative melt down with a brake. I know what’s coming isn’t good, I know. But do I?

And still there is admin, and negotiation, and worries about extraneous things. I haven’t sorted my work questionnaire for DWP, who are back on the Fit Note references. I had a warning letter because time runs out on 6th. But I can’t do it, I can’t work out how to organise it, need to speak to HMRC, can’t work it out. Can’t decide.

I went to the Tavistock Macmillan drop in on Friday, they will write me a letter. I was talking about all sorts, but not really. My brain is in control in some sense, but I’ve lost me in there.

I sense skeins of spider silk, spinning from my brain, around my physical body, back through the mind, a kind of pupa perhaps. Such a weird physical, mental, emotional space. An evisceration of the idea of mind-body dualism, where I cannot tell cause from effect, psyche from physiology. My body is constrained by loss of sensory function in my face, legs and hands, dead numbness, equating to the numbness in my mind. I have an oval area about a foot long, laterally above my left knee, which is dead, yet burns intermittently; I thought it was an area of steroid-related sandpaper skin, of which I have several. But the skin there is soft. There is an absence of muscle, a flatness. The tight area in my skull where the craniotomy heals tugs gently across the diagonal.  I’m weak. I sit and feel the weakness, draining, draining. Steroids? I’m still less than three weeks from the op. Permanent or temporary? A mix? My strong body is gone, and my mind struggles; and I know not whether either will return.

A swimming friend, whom I know only via Facebook, sent me Atul Gawande’s book Being Mortal in both written and audio form. I read and listened, in short bursts over the past week or so. The gift was in response to my blog post Death and all his enemies about social care and our elderly people in particular, and the way we torture people at the end of their lives in such a misguided mess of enforced treatment and isolation. The book is astounding. I am already open to such ideas, yet the range of evidence and approaches, and some of the things I’ve personally done to persuade people to accept care, hit me too. How complicit are we all in this?

Then, where the book turns to treatment for illnesses such as mine, and the purpose of it, then to the boundaries of palliative care, I find myself reconsidering much about the treatments I might be willing to accept now – in particular brain radiotherapy which I know is the primary treatment for me whatever the outcome today. While Gawande talks about the market-driven US (not exclusively – his explanation of the extended family and their care for his own elderly forbears in India is englightening), there are plenty of vested interests at play anywhere Big Pharma and the medical model hold sway. Enmesh those with our current cultural refusal to discuss or accept death, and we have a complexity that is beyond us.

There are many people attempting to address these issues, and a few are succeeding in inspirational ways.  But in a climate where failed austerity policies simply use such ideas as spin in order to justify cuts, and where profit trumps all other value, there will never be anything other than a mess. That’s the real choice; most of us will end up either dying from an illness, or decomposing into loneliness and frailty where the point of our lives is lost. That will most likely be you one day. So would you like a tax cut and a nightmare end?  Or would you prefer to have excellent social and health care that ensures your happiness and a managed decline during which you aren’t locked in a nursing home without your pet, or the ability to wander off when you feel like it, or to drink your nightly G&T? It’s about control. Social enterprise, decent social services in the public sector. It’s not about profit for offshore hedge funds, or investment rooms in nursing homes.

I’ve no idea what’s going to happen later on when I find out exactly what Hunt was made of. But I know that I have choices, and I have plenty of research to undertake. I’m going alone to the appointment; I know it’s going to be hard, but I have to remove myself from the worry of how anyone else there is going to take the news too, and I can’t. So I’d rather take it in myself, make notes, and then explain later on.

Thank you for the lovely messages, and to D for the book.

 

 

 

Advertisements

Moorgate meanderings

IMG_2798

Today my best friend is Nat; kind, friendly and professional, she’s one of the Moorgate HCAs. She runs around after me, and several others, and chats as she goes. Nothing is too much trouble, too silly. We end up having an in-depth conversation about cancer; Nat’s perspective is one more that adds to all of these chance encounters with people I might never see again add a little bit more to my worldview and my ability to adjust to the fact that only a month ago I still believed I was physically strong and in some kind of control…but that’s simply no longer the case.

When politicians criticise the lack of compassion and vocation in NHS staff, when they pontificate about how to bring it back by making nurses less professionally qualified and giving them lessons in bedside manner or whatever Victorian phrase of the day they’ve decided to impose, I have an overwhelming urge to lob a truck load of used bedpans into the commons. Yes, there are people in every walk of life who lack compassion, empathy and the ability to interact on a human level with anyone. A fair few of those can be found supping subsidised drinks in Westminster, and there are of course some in the NHS. I had colleagues whose attitude left a lot to be desired – but they were few and far between. People don’t do the jobs we do for money. They do them because they like people, are interested in them, care about them. In addition to that, Florence Nightingale would struggle with the ability to manage the clinical picture of multiple patients with complex conditions on a neurological and neurosurgery ward without the professional training and experience that role now requires. Our un-esteemed Secretary of State for Health recently used the term ‘ambulance driver’ instead of ‘paramedic’, which belittles and displays such ignorance of the complexity and skill of the work that NHS staff do.

Forgive the rant at this stage, but I hope you can see from what follows that this is necessary. The ridiculous assumptions made by our political masters (and yes, they are mostly men in case you hadn’t noticed) and their judgements on the rest of us owe nothing to evidence. They’re meant to become tabloid headlines, to bully and blame. They’re aimed at covering up the waste and expensive results of their own short-term cost-cutting approach. Their policy fiascos and convoluted management systems aim for something called efficiency while they dump financial and human costs elsewhere and destroy the human beings who are providing a value in the kinds of terms they know nothing of. Is it the predominance of representatives from the public school system in our political establishment that causes this? Children sent off by their parents to dens of bullying at 8 and brought up to survive in the colonies? People who’ve suffered and survived, and truly believe as IDS argued that they’re helping us to pull ourselves up by our bootstraps by being cruel and removing money and support to those who already have very little?

Back to Moorgate. Opposite me is a person who’s been in this area of the hospital for a prolonged period, through the system of intensive treatment, high dependency and this bay. She’s moving on to rehab today, and there’s a constant stream of visits from various hospital professionals who’ve come to say goodbye. There are hugs, stories, many of the staff are close to tears. It’s a privilege to be lying here, back in the immersive theatre of this big hospital; but it’s also quite uncomfortable to be an accidental witness to such a momentous day, an intrusion into someone else’s life. That’s because it’s apparent that we’re witnessing a day that most of these people thought would never come. I marvel at the numbers of people involved in this one story of intensive care and the slow beginnings of some recovery; overhear snippets of stories from the staff, the jokes at her Dad’s expense over the rugby. We all wish her luck as she leaves, and a surge of love for this woman I don’t know and her family, and all the staff so delighted to have achieved what is an apparent miracle threatens to overwhelm me; I know too that she will need care, and support, and empathy, and resources, most likely for the rest of her life. Real support. The support that our NHS is still managing to provide – just – under this onslaught of cuts and privatisation.

It’s nice to have the contact and the interest of someone else’s long-term and subtle problems, and fellow patients have some variations on the theme which are incredibly interesting. I’m no expert, but I have encountered a case involving a young girl who would suddenly become hypoglycaemic (low blood sugar) which can lead quickly to unconsciousness and death.The cause turned out to be a pituitary tumour. It’s the mummy gland, the one that runs all the others in the body, and when it goes wrong all kinds of random things happen. So, we forge friendships over curiosity and medical history, and then tales of childhood and life stories, and arrange to meet for lunch in the summer, in Port Gaverne. We collude on jamming the huge windows open, and as I attempt to insert a bed bay book it slips out and falls. We’ve just gained a bed, and now joke about a Moorgate ward book-related traumatic brain injury arriving from downstairs to fill us up again.

One of my fellow patients lives alone, and has asked for a couple of days in one of the community hospitals since she’s feeling nervous about leaving Derriford. The OTs arrive and check her out. There are no beds for her, because of winter pressures. I resist the urge to butt in; the cause of the acute shortage of community hospital beds is government cuts to council budgets of 35% since 2010; prior to that there had also been lesser cuts. The beds have been closed because there is no money to fund them, and we have been lied to about the provision of community care that was supposed to take their place. This is expensive, and so it hasn’t been provided. My new friend becomes increasingly upset by the problem as her time to leave draws close.  Later I email her and she tells me her GP complained to Derriford that she should never have been sent home alone, and that she is now staying with friends. One more small story; one independent woman, vulnerable for a time through no fault of her own (I don’t ask for much, she said), abandoned because someone thinks we’d rather have tax cuts than pay for such vital resources.

I have a visit from Raman, Mr Fewing’s registrar who is lovely and chats about the surgery. Then Mr Fewings himself, like Tigger, manifests by my bed.

Morning young Ropes!

That’s my old RAF nickname. How did he come up with that?

We chat, he’s still 50% GBM 50% metastasis on the tumour. He says I can go home when I feel ready, but not to go unless I’m absolutely sure I feel up to it. I don’t today, but think that tomorrow I will.

It’s brain surgery, yes, but when it goes well it’s fine! If it doesn’t, that’s another matter,  He says. Mine has gone well. He boings off.

Zoe the physiotherapist arrives; I know her from years ago when both of us worked for a kids’ charity called Chicks. We catch up briefly, then she starts to assess me. I’d thought my left-sided proprioception problems had largely resolved with the steroids, but quickly realised they hadn’t. Zoe says I’ve compensated for them, and they are certainly much less severe. She asked me to close my eyes and moved my left hand into various positions which I had to replicate with my right. Again I felt a physical shock looking at what I thought would be a mirror image and finding my right hand doing something so completely different; fingers extended when I’d thought they were flexed, wrist turned the other way. My walking is very odd, and I’m slumped over with my shoulders raised to my ears. People have been commenting about that for many months. So I’m to draw up my core, engage it, and consciously drop my shoulders. It helps. For stairs, I must remember the left sided problems and be conscious that I don’t know what my left hand is actually doing. I feel very weak, but there’s a definite improvement from pulling up and getting the right position.

Another patient arrives on Thursday, who’s had a brain biopsy. She has two scars the length of mine, and a whole head bandage. She’s remarkably resilient and eats only a few hours after her surgery. We both have right parietal tumours, are of a similar vintage, and compare notes. She’s quite overcome to know there’s someone who’s had related experiences, and it is remarkable. Both of us took some time to act – her precipitating event was a seizure.

We talk more about it, then she tells me her tumour is the result of treatment for childhood leukaemia.

From the ages of 7 to 11 she had active leukaemia, at a time when the survival rate was only 14%. So for every hundred children diagnosed, 86 died. The treatment then was crude and I suspect experimental; now things have changed massively and the survival she tells me is around 95%. But back then, they gave her radiotherapy to her whole head. That’s what cured her, she says, and she’s gone on to live her life, to have children. Now it’s biting back, and there’s a huge amount to deal with.

In the night, an elderly man appears in the bed opposite mine. He’s distressed, and wails. He hates the blood pressure cuff, the pulse oximeter clip on his finger. He has a headache. He’s trying to get up but can’t. The emergency alarm goes off and there are stampedes in the corridor as the medical team respond to a cardiac arrest in another bay on the ward.

I’ll have to do something here…about this.

Our wraith man – next to my bed, staring at me. Mark the nurse whisks him away; tonight they couldn’t cover the shift to find a walker for him so he keeps escaping. They’re understaffed as it is.

I get up for a wander at 5.30, and lovely Rachel, another of the HCAs, makes me a cup of tea and gets me some biscuits and a slice of cake. I eat it at the nurses’ station and she tells me how she keeps falling asleep on the bus back to Tavistock and missing her stop after the night shift. I sympathise, remembering my early morning drive back across the moors when I used to work in Newton Abbot; usually I’d get as far as Yar Tor, but once or twice, especially after an overrun on top of the twelve hour shift, I’d be nodding off in a layby on the A38. The eyes go, focus pulls off, you’re powerless. So I’d stop and sleep for ten or twenty minutes, then press on. Sometimes it’d happen four or five times. I’d arrive home wide awake and unable to get to sleep, beyond exhausted.

I feel good today and decide to have a shower. I’ll be discharged this afternoon, by the time my discharge letter and medications have been sorted.

It’s a wet room with a loo by the door and a wide space where the shower sits on an adjustable pole with a flexi hose. I’m happy to see it’s at shoulder height; my head needs to stay dry. So I undress, leave my pyjamas round the corner, and lay my clothes on a rail at the far end from the shower. Then I turn it on.

The spray hits me square in the face as the showerhead rears from the holder, then arcs up and sprays the entire room. It’s lovely to have water on me. But my head is supposed to be dry. I try to grab the shower head and it turns, spraying the side of my head, before I think to turn it off with my wobbly hands. Now I have wet hair, wet pyjamas and wet clothes. Nothing new there then. When I manage to sort it out, the shower is lovely. I’ve wound a towel round my head, and spend some time just standing, letting the water run cool over my body.

The dressing has unstuck, and so the nurse replaces it over damp hair. She offers to take a photo of the scar, which she says looks lovely. That’s the one you see here, with the odd lump of my swollen ear to the left hand side. The scar extends to perhaps 3cm from the top of my head.

Another Tigger boing in from Mr Fewings:

Morning young Ropes!

I’ll be called in the week after next for the histology results; whichever of the two possible outcomes are malignant (it’s definitely not an abcess) and indicate radiotherapy as a beneficial next treatment option. So I know enough to keep me going.

At 4.30, it’s home time. Mum and Dad pick me up, and I manage the walk in two stages. Sausage, the dog formerly known as Bun, is ecstatic as I reach into the car. It’s lovely to know I can cuddle my dog again. We’re having the pesto I made last week for dinner, with spinach tagliatelle. Family, good food, dog. Hunt gone.

 

 

 

 

 

 

 

 

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.

 

 

Neuro recovery

IMG_2809

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.

 

 

 

 

 

 

Op Hunt saboteur: going under

Where’s my pyjama t shirt? Mum’s ironed one pair of spotted pyjamas she wants me to take but, I never iron pyjamas. I don’t like that horrid little girl pink of the t shirt, nor the little girl hearts on the bottoms. What’s that about? Will the t shirt go over my head after the op?

Have I got a sore throat? I feel a bit chesty too, maybe a cold. If I say nothing will it be okay? But of course I’ve been feeling like this since October, that getting a cold ache and tug as I inhale. Nothing new.

Washing my hands I think of bugs on the towel and grab a fresh one. I used the phone, that must be crawling with microscopic life. I go and wipe it.  Infection control training, a necessary annual annoyance at work, does stick. I was always careful at work of course, primarily because you’re routinely making interventions such as intravenous cannulation where you can introduce pathogens straight into the blood stream. There are also many immune compromised people, and it’s easy to start spreading their nasties to others. But it’s only in the past few weeks that this concern has built into my own life now I’m taking steroids which makes me more liable to infection. I grew up outdoors, covered in mud, drinking unpasteurised milk often straight from the cow. I take the view that we all live in balance, including with the microbiomes that live within us. But not today.

Mum keeps asking have you got your…let me get that, don’t do that I’ll do it… my inner crocodile appears. Bun aka Sausage is most upset this morning. She knows.

There in the back of my brain, is the tangible presence of my tumour, the knowledge of the op, the potentials for what Hunt will turn out to be… but whatever that is, it already is. It’s just that I don’t know who this bogeyman is, what he’s  doing to do to me later on, whether he’ll leave a lingering whiff of aftershave or a large spillage and nothing will get rid of the smell.

I want coffee, I want breakfast. At last it’s 10 o clock and we leave. Back onto Fal Ward, same bag, same label, enhanced sense of dread. Will they cancel again? Finally I get the call to change and head up to blue bay. It’s less busy today. I’m trying not to think about the B word. My anaesthetist flies up. He’s L, a pony-tailed hippy doctor, and we have a chat about the anaesthetic and he explains in detail that he will be asking me to wake up and to consciously make the effort to  breathe at the end at which point he’ll remove the tube. I like detail, and feel reassured.

Finally, I get my HCA with a folder, the final sign that it’s going ahead. He runs thought the last minute bits, name check, allergy check, date of birth, signed consent form. No danger of some imposter getting my op today, I’d probably kill.

We start our walk to the theatre waiting room. There I ask them about the cancellations. Many of the people leaving the NHS at the moment are the experienced staff, and staffing is as much a problem as the beds themselves. It’s the same in the ambulance service. Only the young and fresh can keep with the pace and the relentless pressure of under-funding and under-staffing; the whole resourcing issue that is the end result of so-called ‘efficiency savings’, known as ‘cuts’ if like me you can speak plain English.

Mr Fewings my surgeon bursts through the door and hurtles past from the previous op; he’s gowned and wearing a rather up-market embroidered St George’s cross theatre cap.

“Morning young Roper! I’ll be back in a minute to do your op!”

“If you don’t I’ll shoot you.”

“My wife’ll probably do that for you.”

The HCA and I are called and walk to the anaesthetics room for Theatre 6. Lots of kit, my HCA, a theatre sister, D, who likes to swim in the sea, and C the anaesthetics registrar who I discover has had an interesting career path including a spell as a GP. He’s wearing a gown in a particularly fine shade of blue, another good sign.

C is going to start by inserting an intravenous cannula. I don’t even feel it, and then notice it’s a grey, wide bore, into my hand. Any paramedic would be impressed by that. Next, however, comes an arterial line for instant monitoring of my blood pressure during the surgery. This goes into the radial artery in my left wrist. A stab of fear. I don’t mind needles usually. My left hand still isn’t entirely sure where it is, and there’s a period of struggle where I’m failing to hold my arm or hand in the right place before I remember that thanks to Hunt, while I might think it’s in one place, it’s most likely not. So I end up with a board to put my arm on.

The arterial line presents some problems because I have a small and oddly-angled radial artery. C uses more local anaesthetic each time, but I’m fretting about it, feeling afraid of the next stab although it’s perfectly bearable. More displacement fears, something to latch onto in a physical sense. After a chat with L, C tries again using ultrasound. I begin to get that faint feeling, the sicky ugh. I can hear them discussing it, it looks to be in but isn’t. I ask for a couple of minutes to get over it, which they give me. D talks more about the sea to distract me. At this point I discover that L likes to swim under the full moon at Crazywell Pool, one of my favorite wild swimming spots on the moor. I’ve got the right gang in here; but I’m still really fretful. I hate it.

L takes over the arterial line as he explains to C about the planes of the artery. I think back to all those intravenous cannulations (into the vein which is far less complicated than this) where you miss, and start to lose confidence. I had one period as a new paramedic where I felt I’d never get one in again. Then whop, in goes a difficult one, and your confidence returns. You start to feel them in three dimensions. Noddy stuff by comparison of course.

We’ve now been almost half an hour; it’s 1 o clock. I’ve enjoyed chatting with the team as they distracted and tried to relax me. It’s a new experience for me to feel so anxious about things like needles, the minor transient ache-pains that I know I have to go through. It’s just today I don’t want to. I don’t want to be here, but I know I must.

And then the atmosphere turns as L switches into professional mode to get me anaesthetised. The padded mask, quite claustrophobic and I can’t feel the oxygen coming through. that horrid curry-sauce scent that reminds me of Scottish vomit (x pints o’ Heavy, chips and curry sauce being the most usual stomach contents encountered in the pool hall I used to work in as a student). Why do masks smell like that? I take deep breaths, in and out, in and out, oxygenating ready for inubation.

The hiss of gas, the curry still, D’s face, L looking at me, his green cap has a dangly back for the ponytail and bobs wobbles as he talks; the motion is like the dippers bowing and bobbing underwater in the Tavy. The plastic insert in the ceiling pulls me, concentric circles in white. There you go Lynne…

IMG_2708

 

Severe operational stress

IMG_2771I feel shredded. I was fuelled by anger on Friday, an anger I could not fully express to the equally upset staff at the hospital who are powerless to do anything about the situation we are all in.

I’d become dehydrated and felt dreadful as I’d had nil by mouth since 10pm on the previous evening, and my op was finally cancelled at 1215. I ran straight into the Spotlight interview fuelled by a pint of water and cheese and biscuits that I could barely swallow.

After the interview came a kind of emotional entropy that led to the sucking presence of a black hole. Chaos in my head as I wondered what to do, how I’d get through another weekend. Had I known the op was off before I’d got there, had I not met my new friend and been hit by her dreadful predicament, I’d perhaps have been able to prepare for it, plan some treats. I couldn’t cry even. And still no dreams, a kind of blank.

I’d half watched Lucy Hawking talking about her children’s book on breakfast TV in the bay at Fal; a boy asks Stephen Hawking: What will happen to me if I fall into a black hole? You’ll be turned into spaghetti! Stephen replies. That thought continues to echo over the weekend. I feel like spaghetti.

Yesterday (Saturday) I woke as usual at 3am, and read through Facebook. I couldn’t access my writing brain at all. I could barely stand in the morning; a weird internal tremble, a fine quavering drizzled from the point on my neck which marks the base of Hunt’s physiological and psychological presence. I laid down and managed to doze for a while after breakfast. I’m playing music, and have latched on to Adele’s new album, and an old Anthony and the Johnsons’, both of which connect emotionally and seem to calm me, but without blasting through my feigned equilibrium.

Plum and her daughter and I walked slowly on the moors to Wistman’s Wood in the spring sunshine in the afternoon, before retiring to the Two Bridges for a cream tea. It was lovely to see them, and to be outdoors, to chat with a ten-year old. I had a couple of wobbles but stayed upright, all through the slightly blurred vision that lends a kind of 1980s US soap flashback atmosphere where Bobby Ewing emerges from the shower having been apparently dead for the last two series…

Today (Sunday) Bun and I went to Plymouth’s Barbican and the Hoe with a couple of paramedic friends and had a lovely lunch and a big catch up. Of course the topic turned to the bed situation at Derriford.

Our district hospitals, in common with their cancelled surgical patients, are all under severe operational stress. It’s a constant, especially over winter where illness is more prevalent both in the community, and in the staff.

One point became clear today as we discussed it. When a crisis hits, the hospital trust implements a system of alerts that trigger certain actions to alleviate the immediate problem. But that’s not what’s happening, because the problem cannot be alleviated by the measures available. Bottom line – high alert states are not sustainable as a matter of routine, because once implemented there is simply nothing more you can do to further relieve the pressure.

This state of affairs has been continuing for weeks and months at a time, on an annual basis. The trusts are almost all in financial deficit and missing targets  and it’s worsening rapidly. So they are losing money with hundreds of operations cancelled, and with no way of addressing the fundamental causes of the crisis which, while varied and complex, come down in the end to not enough money in the NHS and not enough beds, and swingeing cuts to social care which compounds the situation.

(When the government says social care is down to councils to fund, they fund the councils and have cut their budgets by 35% since 2010.  When they talk of billions in bail outs for councils, they are talking Tory councils only. In any case bail outs are too little, too late).

This document from the Royal Devon and Exeter Hosptial (RDE) shows exactly what kinds of pressures are placed onto the services – and the staff – and explains in detail exactly how the pressures arise and how little can be done to sustain this level of crisis management – because that’s what this is – crisis management, resulting in the failure of the core functions of the hospital and its inability to meet such vital patient services as cancer waiting times, another of Jeremy Hunt’s alleged concerns. And the money they do have for surgery and so on is going down the drain.

It’s worth noting here that RDE is smaller than Derriford which is also the major trauma centre. If anyone can point me to Derriford’s equivalent document I’d be most grateful.

One common excuse for such crises are high numbers of elderly living longer. So where, in an area where people come to retire into the vast new housing developments, the Macarthy and Stone type buildings, are the commensurate extra resources? Without some joined up thinking and long term planning, we are sunk. Our hospitals have been struggling for years with this race to build while we allow the whole system to lurch from crisis to crisis. When I worked in Torbay just a few years ago, it was routine to find five or six ambulance trolleys with patients queueing up in the ED corridor, waiting for cubicles to become free. That hospital was already overwhelmingly too small for the burgeoning population 15 years ago.  At that time 65% of the Torbay population was over the age of 65. Many of those have no support network because they’ve left it behind for a dream. I met one woman, in her late 60s, whose husband had become ill shortly after their long-planned move to the seaside. I’d been sent on the car to assess, and as we waited for an ambulance to take him to hospital she told me their story. He was dying, and had been for the year the’d lived in their lovely home. She’d been stuck, unable to join the clubs she’d meant to join; she missed her friends from home and her family desperately, but hadn’t expected this to happen. She told me she’d decided to knock on her neighbour’s door, try to find a friend close by where she could pop in for a cuppa now and again. The neighbour opened the door: ” We don’t socialise” she said, and slammed it in her face.

And if it’s not the role of government to plan for this, to have a long-term strategy, then what is their role? Blaming the crisis on the elderly?

The NHS needs money, now. It needs beds and staff. Instead it has a Secretary of State in Jeremy Hunt who has busied himself with the white elephant of a completely uncosted, routine 24/7 NHS  while he attacks and alientates the front line staff. Meanwhile the NHS truly 24/7 system, the one that picked me up, diagnosed and planned my urgent treatment so efficiently and compassionately, is unable to carry out its plan for me. It has the resources, for which it is paying; the expert staff and the theatres. Yet these cannot be used for the want of beds. The entire system, based on clinical priorities, has collapsed in a catastrophic haemorrhage of money and lives. My tumour continues to grow.

Hunt is cutting nursing bursaries when we have too few nurses. He is discouraging the mature nursing students with life experience and most likely preventing many of them from entering the profession because they won’t be able to afford it. Doctors are leaving in droves as he tries to force unsafe practices on them while the hospitals collapse.

Hospital trusts have to say this too. Look at the apologies and excuses. It’s not their fault. But for goodness’ sake tell it like it is for once, stop covering for this government which is letting us all down.

I am under severe operational stress. I’m on Black Alert.  I woke at 2am, and I’m still here writing at 0622. What if I don’t hear today? What if it’s another week like the last two? I was warned.

BBC Spotlight

BBC Spotlight 11 March 2016

I had already spoken to a BBC Devon reporter about the cancellation of 90% of theatre slots at Derriford at the weekend, and was going to speak to a Spotlight crew, and also on BBC Radio Devon, earlier this week. I wanted to make a point about cuts and their expensive results in both human and financial terms, but was quite unsure about how that might work out. I was wary too of making this about my personal situation, my cancelled op, to the detriment of all those others in a similar position. Radio is far more controllable in that I’d have been speaking live to the presenter. For the tv news, I’d lose that in the edit. In the end, my op stopped the piece and I didn’t feel able on Thursday to speak about it.

Yesterday I knew with absolute certainty that I’d do this. The final impetus came from the woman I’d met in blue bay and our long conversation as we waited. So I called the reporter as soon as I got news that ops were being cancelled, then again when my cancellation was confirmed. Within an hour of arriving home, the reporter and cameraman were there and ready to film.

John was very receptive to my point of view, and having been told earlier by another reporter that he didn’t want political points, I was pretty concerned that this would become a story about the hospital, about their failures rather than the bigger picture.

Once we’d talked in depth, John was happy to discuss my opinion particularly because of my professional NHS experience and because I had some statistical evidence to back the social care crisis, although not for the information I’d been given at the hospital which hadn’t been volunteered in the context of a news report. There’s a whole debate to be had here about politics and the BBC, and the notion of political bias; but opinion is valid, and it isn’t about perceived political bias, it’s about airing the range of viewpoints and sparking debate. Closing it down would appear to be the political and media default at the moment, through rubbishing entire viewpoints and political stances, through personal attacks and sneering.

As John left, he told me he’d already picked up on two points I made that he was going to use to make the story. I didn’t know what those were, however.

I’m very pleased that my points were made, and that the edit allowed me to have a valid and informed opinion. But it could have gone horribly wrong.

I’d like to add Plum’s comments here too, because as ever she’s hit some crucial nails home. (And my happy op top is by ebay, Plum).

I have massively mixed feelings about this.

On the one hand I am incredibly proud of Lynne for having the presence of mind, dignity and perspective to make the very last minute cancellation of her time-critical brain tumour surgery the headline story on her local TV news. She speaks with clarity and without histrionics. I couldn’t manage that in her situation… I can barely talk to her about it without becoming ranty and shouty and sweary and thoroughly undignified… I certainly wouldn’t be fit for TV before the watershed.

But on the other hand I am sad, and livid and disappointed that her surgery has been cancelled in this way. And I am even sadder that the medical director at Derriford, in his statement, didn’t get the obvious point across… That critical care beds are in short supply because this government does not adequately resource the healthcare service that we have all already paid for, that we continue to pay for, and that they promised they would not interfere with before they were elected into coalition. While we have people, in positions of power in NHS Trusts, who do not challenge the government on the elephant in the room that is lack of funding we will never see any improvement. And while we have an electorate that can’t be bothered to look beyond the end of their own noses, and the spin and lies this government feeds them, there is no prospect of change.

And I am absolutely apoplectic at the Tory MPs who, today, talked for 4.5hrs on a two clause bill about foreign nationals that has already been once debated and rejected. They spun that out purposely to thwart debate of a private member’s NHS Reinstatement Bill.

So today sums up perfectly the dichotomy between those who need urgent critical care, and those who will not tolerate any challenge to the government having divested themselves of the responsibility to provide that care free of charge at the point of use.

I’m ashamed of our ‘democracy’. It is a sham.

I’m also quite jealous of Lynne’s green stripy top.