Burgh Island &the naming of Hunt: 1

A text from my friend Plum, who’s suggesting she comes down for the weekend and we go somewhere nice. Yes please.

Out of interest, how do you feel about dressing for dinner?

Dressing for dinner? I have no clothes, I’ve grown out of all my dresses…

Well, I was thinking of the Burgh Island Hotel and I’ve always wanted to stay there so you’ve given me a bloody good excuse.

Seriously?!

She calls back a bit later – not only has she managed to get us in for one night on Saturday we’re also booked into the Mermaid Suite, which overlooks the famous Mermaid Pool, built by damming an inlet on the side of the island so that it remains filled with sea water.

Naturally, being wild swimmers who regularly frequent this area, we’ve visited and enjoyed this private pool before on a number of occasions. The difference is, we’ve been there in a slightly less than official capacity. The normal raid involves swimming round the back of Burgh and swimming covertly (ish) up the gully to the dam, before scaling the rocks and sneaking in. I think we might have to skinny dip just to make our official swim less legit.

Mum makes one of her famous treat lemon tarts for the morning, we’re to be there by 12 latest as the weather’s looking iffy and there is only the landrover to get us across because the sea tractor is out of order.

I retrieve a couple of dresses from the cottage, and actually I’m not quite as fat as I thought, though it does look rather stuffed around the middle. My big gold velvet shawl will sort that. We joke about being told off at dinner for various sartorial crimes an or having unsuitable restraining underwear.  Plum of course has made a call to the hotel and discussed our dressing for dinner worries with one of the staff. The gist of it is don’t wear jeans and make a bit of an effort, but you don’t have to go mad, although you of course may.

I’m so excited! Texts Plum. So am I. Once we’re there, we’re picked up by our Slovakian driver and over we go. I think of the Simpson’s episode where Homer joins the Masons. Another world of luxury is revealed, different entrances, different approaches.

A glass of chilled sherry, bags carried up, and there’s a bottle of Sauvignon Blanc on ice from Kari in the siting room of our suite.

We start with a postprandial sauna, then wander sweatily to reception for our green outdoor towels.

“You’re going swimming? I’ve already been today!” laughs the receptionist in a strong eastern European accent, arms waving and eyes rolling. Many of the ice swimmers on the various outdoor swimming social media are eastern European, the kind who saw a hole through ice with a chainsaw and pay a man to row around all night so it doesn’t freeze over before the morning dip. But this woman is clearly not of that ilk.

The staff are so funny, beautifully polite and attentive, with a formal style of speech that’s modified by twinkles in the eye, as much banter as you like and an eccentric edge to their dress and hair which makes me feel at home.

We have a wild swimming friend called Queenie, and the most famous regular guest in the Mermaid Suite from the 30s is her namesake, whose bedroom furniture was left to the hotel and now lives in the suite. Walnut art deco curves, gleaming and gorgeous. It’s not my favourite era in terms of style, but to see this icon from within emphasises how place and time can sometimes throw up a crazy perfection from such disparate elements. Back to constellations? Such formality, clean lines and control in Art Deco, such wildness and edge on this piece of heavenly Devonly coast. The colours and the light form the mainstay of the connective tissues, and the whole seems to hover in the spray while simultaneously bursting forth with pure glamour.

We sneak into the pool, as spray splats over the little dam and across the surface.

I don’t feel confident in my balance or movement but am able to swim a little, puffing, while Plum heads across to the wilder side. It’s blooming cold, we reckon 6 or 7 degrees.

The seas here are spectacular and often huge, and it is swimmable on the right tide at times when you’d think getting in was certain death. That’s why this is one of my favourite swims. Now I’m looking out at the wild sea where I’d more usually be found from the aquamarine stillness of the pool. I remember once  glimpsing the pool from the top of a huge wave while playing the lookout game; you swim gradually closer to the rocks then swim then allow yourself to be lifted heavenwards on an approaching wave as it towers and rears in preparation for crashing down into the rocks, suspended momentarily on the top of the world. It’s a life-enhancing experience to look over that precipice, and drop off the back before the final crash. But for now I’m cocooned with the mermaid.

 

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The neurosurgeon

I’m going to see Mr Titus Berei, my consultant neurosurgeon, who most likely won’t be doing the surgery but will hand me over to another surgeon who is away till next week.

I call Plum.

“My surgeon has a superhero name – Mr Titus Berei”

“Ask him if he wears a cape!”

I have a call from Tony Shute the neurology oncology nurse, who arranges to meet me next week, and asks me to come to see Titus at 3 on Friday as he wants to meet me before the weekend.

“Hello I’m Titus, consultant neurosurgeon.”

Neurosurgery is the place where god meets science. My meandering thoughts in the MRI come from that place, where the brain as a physical entity takes over and fires, while all the time metabolising to keep itself alive and controlling actions that keep the rest of the physical self working. The temptation is always to polarise concepts which are better left on a spectrum (as in the labelling of ‘normality’ in and various conditions in mental health – what is normal? It’s a spectrum, and there are extremes of course, and in simplistic terms they are not necessarily abnormal, they’re a part of the whole).

I prefer to think of constellations; rather than art and science, god and science, mind and body, body and soul, there’s a milky way out there in which the whole whirls, interacts, bypasses, attracts and repels. Imagine trying to work your way through the galaxy (and then between other galaxies and back the other way) in order to separate each part and work out what it does. I’m deliberately and uncharacteristically only vaguely following the EU debate by dint of having too much else ongoing, but it springs instantly to mind as a demonstration of everything that’s bad about this human compulsion to polarise and split, to constantly highlight difference and reinforce the ‘otherness’ of those who think or behave in different ways. (Do your tie up says Cameron to Corbyn; useful, Dave).

What am I trying so clumsily to say? That the point where these dualisms meet is the most fascinating? The nub of the matter? Neuroscience and neurosurgery is right there. So it’s interesting to me that the superhero neurosurgeon is so very human on a level where both Dad and I feel immediately glad that he’s talking with us, asking questions, answering ours, pondering, explaining the surgery and the possibilities for what this is and where it is. And soon he or his colleague will be removing a section of my cranium and excising a tumour from my brain, which has made itself known in a host of ways, many of which I/my mind has manged to explain away to itself, while all that’s the real me has a bit of an enforced nap. Yet he can only see my physical brain, not the thoughts, not the me-ness of it.

I ask him several questions, and I’m instantly overriding my decision to avoid researching too much into possibilities till we know what the tumour is. I ask him, of course, what he thinks it looks like. He thinks maybe a met (a secondary cancer that’s migrated from a cancer elsewhere in the body to my brain, hence the CT scan which was aiming to find it), although he won’t be committed. He thinks it’s malignant most likely, but again I know we won’t know till it’s out and the histology is done (the part where the tumour is examined microscopically to identify its makeup). He says that there is always a very, very, very, very small chance that it will turn out to be something like an abscess, but that it would be a big surprise were that to be the case.

Rather than do the biopsy first, he’s suggesting they remove the whole tumour since it’s superficial and also in an area of the brain where the functions are less vital; the right parietal area. I’m very happy with that plan, one lot of surgery rather than two has to be a bonus. And I want it out of my body.

Although Titus doesn’t think he’ll be able to do the surgery before he goes away on Tuesday since cancellations are extremely rare, he is going to speak to his colleague Mr Fewings who will be back on Monday evening.

It was Titus himself who called me the following Tuesday to tell me he’d spoken to Mr Fewings, and to check I was okay and happy with that, and he who insisted on seeing me on Friday because he didn’t want to leave me hanging over the weekend without first speaking to a neurosurgeon. Another subject I don’t have time for now, but which I will most certainly return to later; the so-called absence of compassion and vocation in front line NHS staff who’ve gone so far up their own bottoms with technology and medical advances and the junior doctor champagne lifestyle they’ve forgotten how to care. Back to Titus:

“Do you have any more questions for me?”

“I was wondering whether to get my hair cut short”

Where did that come from? I’m thinking about metastasised cancer while I continue to rapidly read the CT scan report displayed on the screen behind Titus’s head.

“Oh, don’t do anything drastic, there’s no need for that,” he says.

“Sorry, that’s a silly question”

You’re a consultant neurosurgeon and I’m asking for hairstyle tips?

“Not at all. The area we need to shave is here.”

He places bunched fingers on a spot towards the top of his head, forms a circle with thumb and index finger and demonstrates its eventual size.

“You can use the longer hair on top to cover the scar” Again his finger and thumb indicate the ideal length. He’s smiling at me, thinking what an idiot most likely. He lets me take iphone pics of the scan but don’t dare ask if I can take a selfie with it.

But Titus understands how minds work.

“What a lovely bloke” says Dad, who’s not normally given to superlatives.

 

Easy listening in the MRI

“Oh! You’re strong!”

The neurological registrar’s head flashes past my shoulder and comes close to headbutting the wall. It’s clear my paramedic wild swimmer superpowers remain in the right arm at least.

Not so in the left, which is slightly weaker so that when I pull him towards me the neurologist remains upright.

It’s during this examination I realise that my face is numb down the left side, along with my left leg and arm to the elbow.

“I don’t think it’s a stroke, I’m going to send you for an MRI scan. You’re not claustrophobic are you?”  Erm, well a bit depending. I’ll be fine.

The MRI is much smaller than expected; I lie on the slab and the radiographer has to put my left hand into my pocket because it keeps dropping off the table.

I plump for easy listening music, as the mask is placed over my face. The radiographer is smiley, friendly, chatting about the noisy aspects and durations of the scans, and places an alarm in my right hand so I can shout if I need her.

There’s a small mirror at eyeline in which I can see my supine body, and to the rear, a red-brown painting of slightly slanted wide brushstrokes. I start by trying to work out what it is: leafless trees? A squadron of Mr Hanky the Southpark Christmas poos? I’m plumping for the poos.

The music plays, and the echoing voice of my radiographer warns me this scan will be noisy and take a couple of minutes. Noise isn’t quite it. There’s clunking, whirring, banging, and the music oozing around. Vibrations work their way through the very cells of the inside of my head, neck and chest. It’s the kind of physical experience you get by standing by the speaker at a gig, only coarser and more discordant than most musical genres, maybe a bit Nick Cave? Or PJ Harvey.

I think of the Carpenters, a young and beautiful Karen, mutton-chop sleeves and maxi skirts, big hair, trying to stay at the back drumming while they push her to the front to sing as she disappears again with anorexia, all the while pouring forth that calorific chocolate voice. That’s her in the MRI, reasserting her drumming self in poltergeist form. I hope she’s having fun.

What can they see inside my head?

A dark grey silhouette appears, my brain in fashionably drab wall colours. Aside from being a woman with a love of colour, I could never live with a wall where I can’t see spiders. Can’t see the spiders on my brain chart either for that matter, so I turn it orange, then aquamarine. Definite improvement.

I start from the top and name the areas of the brain I can remember as I go. Then I return my cartoon map to orange, and start from the inside, working out, scrabbling for functions. Why am I seeing my brain in textbook form? It’s not something you usually think about, invisible yet ubiquitous, omnipotent…

I walk into the farm building. He’s lying on his back, 12 bore shotgun resting along his body from thigh to chin, a dark, petechial-looking rash of shot sprayed up, over what’s left of his nose, upper jaw and cheek.There’s a whiff of earth and death. His hair is quiffed  with blood and brains, dark and sticky, drying in the warm air. There’s a mess from the exit wound that’s blown the back of his head off, almost black and shiny in contrast to the dusty earth floor.  I look for signs of life, but know there are none. I grab my stethoscope to listen for heart and breath sounds before setting up the 3 lead ECG. My job here is only to note and remember the details for my records, recognise death, then complete the paperwork for the police. Then I’ll go and check on the people who found him, have a chat, make sure to contact the local surgery so they know there are people who might need support.

I go to move the man’s shirt, and notice the hunks of brain, satsuma to grape sized, dropped casually as if from the sky across his chest like a Masterchef plate. Greyish, alien, certainly not perfused with blood or alive, but unmistakably brain. Above his shoulder is a larger chunk that wobbles as I move my foot to squat over him; that’s why you won’t often see an experienced paramedic kneeling.

Brain, body, soul. One of the clear categories for not starting advanced life support for a paramedic confronted with a recent death is ‘massive cranial destruction’. That’s what I see here, and the death of the body is evident in any case. Brains are something else, the control centre, the mind, the self. I wonder what this man was like, how his voice sounded. Did he have a sense of humour? What drove him to this? What was he thinking as he pulled the trigger, how did he keep the barrel straight, not flinch? How did his brain let him die?

A new scan starts.

“Lynne, we’re just going to pop a cannula in and inject some dye so the doctor can get some more definition. Is that okay?”

Uh oh. There’s something there then.

Cannula in with a sharp, welcome physical pain, dye in, poltergeist Karen returns.

What would be best? Stroke, maybe. I’m not in a majorly bad state, considering. I’d settle for that. If it’s a clot, though I’d have to take warfarin and won’t be able to eat broccoli or drink pink grapefruit juice. MS?  It’s in my family; my uncle died from complications in his early 50s. I’ve already discussed that with the lovely neurologist who says that a genetic link isn’t established but that the MRI will pick it up. I’ve had no visual disturbances either, and those tend to go with MS. There are plenty of other degenerative diseases of the nervous system which I decide to ignore. The various forms of dementia keep nudging, and I know that’s my worst nightmare. Losing my mind. Brains chunked all over the floor of my life.

Tumour? I try to blank that one. But it might be a small, benign tumour, treatable. Might not. I’ve been to people who have the nasty type, read up on them afterwards. I like to know, to understand the workings. If I have galloping dementia I won’t be able to do that so maybe there’s a bright side.

“There is an abnormality there” says my neurologist. I know that already. We’re sitting back in our little room in the AMU. The nurse – a proper Plymouth chap full of muscular banter and warmth, who looks to have dropped in from a passing frigate, has a serious face on for the first time today.

The scan appears on screen, as the neurologist selects the picture he wants.

“There? It’s a tumour”. He’s looking me in the eye.

I think I say “Oh”, then “do you know what kind?” It resembles a misshapen foetus but I reject that image at once, think of nuts instead.

“The white area around it is where the dye has been taken up, so that’s the blood supply. A blood supply usually means it’s malignant.” I know that all cells need nutrients and oxygen to grow, and cancers set up their own supply lines in the body, muster their troops.

“It might be a primary brain tumour, or it might be a secondary from another cancer somewhere else. So we need to do a whole body CT scan to check. There’s a large area of swelling, where the tumour is irritating your brain. That’s what’s causing you the problems so we’ll give you a course of steroids starting now.”

I had breast cancer in 2010/11, culminating in bilateral mastectomies. I think of myself as one of the lucky ones, because my cancer was supposedly not invasive, and was discovered almost accidentally. It turned out to be far bigger than expected when removed, and so the mastectomy became the best option. But there were good margins of clear tissue. My un-diseased breast mastectomy was my prophylactic choice based on my mother’s breast cancers on both sides, and my outdoor lifestyle and hatred of bra wearing. I got my histology reports and researched what I had, and felt I had a good idea of the risks. Plus I wanted rid. There turned out to be a risk factor for cancer in that breast too, so I felt entirely vindicated. Mastectomy also meant no radiotherapy which was a bonus.

So this is potentially a bit of a shocker, though of course it might not be relevant at all.

So there’s a wait, and then the CT scan.

The nurse asks me if I want a private room, but I choose the recliners in the treatment area where there are people. I watch him as a more traditional-looking female nurse glides by smiling. I love the contrast, the variety of styles and approaches. They all work together, doctors, nurses, care assistants. I’ve just had a chat with the cleaner too. It’s a team, where they fill in the gaps, relate to their patients who all need different things. No corporate bland for the NHS, despite the pictures along the corridors spouting mission statements and branding.

I don’t want to be alone. I’ve called Dad who’s gone to fetch Mum from the prison where she works. I call two friends and tell them, just to make it real and have some contact with voices I love. I haven’t cried or wobbled, I just feel stunned.

“Thank god for the NHS” I say to Kari.

“You greedy cow! You’re getting all our money – won’t be any left for the rest of us once you’re done!”

Alongside me to my left rests a young woman, recovering from a lumbar puncture. I ask her how it was and explain what CSF is when she wonders, admiring her funky bag. Then I tip my cup of water all over the floor next to her, narrowly missing the gorgeous bag.

The nurse has bought me a refill of water. I pick it up and spill it over the table.

“I’m so sorry” I tell the young woman.

“It’s fine, I overheard you telling your friend, don’t worry.” She smiles.

The nurse reappears, this time with a towel, and mops up the growing puddle.

“It’s not your fault, don’t you worry”. I want him to call me ‘Bird’ but he doesn’t.

He brings the steroids and more water. I pick it up.

“Right hand!” warns my young neighbour, giggling.

“Thanks Mum!”

Bless her. Young, probably scared and relieved the nasty bit is over, and confronted with the damper random effects of my brain tumour.