And we have a plan

Today I’ve seen Mr Paul Fewings, my consultant neurosurgeon. The surgery is next week, and should be confirmed tomorrow.
He’s an approachable, friendly man, straightforward and confidence-inducing. He interjects with a gag from time to time while writing up his notes as Tony the neurology oncologist nurse, Mum and I talk. I don’t think I need worry about the cape.
He thinks mets are unlikely, tells me I have gut inflammation (which I have had before) and which is the reason for the notable lymph nodes on my CT scan – the ones I was thinking reinforced the concerns about metastasised cancer. There is no sign of primary tumours elsewhere. I feel huge relief about that, because the thought of coming straight in with stage 4 cancer was pretty scary. Mr Fewings says the CT is “very reassuring”.
He’s categorical that we don’t know what the tumour is till we get it out: “Could be anything” and explains the craniotomy, the bit where he takes out a chunk of my skull “like an upside down horseshoe”.

I won’t be able to see the actual tumour (I was hoping to trap Hunt in a little pot where I can give him the evil eye), but will be able to get pics of the slides which will be nice. Nice? Seeing Hunt magnified?
So it’s wait and see, with a more positive second option. I know I’ve done too much research and thinking, and I did drag too much information from Titus the first surgeon. Not making that mistake again. I was up blogging from 3 am last night, no chance of sleep at all. Hopefully I will sleep later – and from tomorrow my dose of dexamethasone is halved which will most certainly help. The blog feels cathartic, get it all out now. And my mental state is okay, but so random.
Mr Fewings hasn’t emphasised the likely malignancy of the tumour either, although I have been clearly warned. But then, likely isn’t definitely. I see no value in being wholly unprepared for the possibilities, and most especially in blanking the likelihoods of what’s to come, but equally I seem to have wound myself to a tangle of accepting that one of the two worst options is going to be the outcome. Of course those extreme potentials also contain hosts of other variable factors, as do the lesser ones.
People assume that if you have any kind of medical background you know everything about your illnesses (and often theirs). As a paramedic I know lots about different conditions because I encountered most of them, some only tangentially, many repeatedly. Trauma, MIs, strokes, diabetic crises, mental health crises, people at end of life from diseases or age, social problems, disability. I know what to do in the crisis, I know how to assess, manage and treat the immediate, life-threatening concerns, manage the situation and the incident, access the right care pathway (if it still exists in the face of austerity). I’m fascinated by it all, and I research anything I meet, chat to doctors about how I might have managed a condition better, or whether a certain intervention might have been better avoided, or talk generally about a condition. But medicine is a vast area of highly specialised and rapidly-advancing knowledge. I know nothing. Yet I know too much.
I hadn’t realised till today how caught I was between the polarised negatives. I know it’s still potentially nasty, but there is some hope.
I’ve signed my consent form which says there’s a 1 percent chance of death or serious disability, post operative bleeding and infection.
A 3 percent chance that the deficits I have will be permanent in some form, or become worse, but a good chance I will recover once the tumour and associated swelling are gone (it’s the swelling that is causing my symptoms).

Once Hunt is out and identified, the treatment plan proceeds, and I should get the results hopefully on day 3 after surgery and be able to go home on the same day if all is well.
I feel my head is lighter somehow.
I have prepared myself for the worst, but I can also hold on to some hope that there’s a future. Whether that’s a long future or a curtailed one, it’s still a future. And one other paramedic insight – you have no idea how many random, flukey things can happen to you out of the ether, nor when you’re going to die, nor what from. The C word is one to muse on later, but there are some equally bad, and many worse illnesses that don’t carry the same Jihadi snuff video potency. In the meantime, if you are interested in such debates about how we frame our experiences and are in turn framed by them , the late Susan Sontag, when she had cancer, wrote a book called Illness as Metaphor about this very topic. I’m intending to re-read it in the future.

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Burgh and the naming of Hunt: 2

12748054_10153507399163251_3130610663721622797_oAn utterly marvellous weekend at the Burgh Island Hotel with Plum.

We chat about all sorts, wild swimming, the rise of Lidos, cancer and metastasis, her father who died from a glioblastoma.

We laugh, wonder which of the other guests the killer is, and where they’ve hidden the body, speculate on the relationships.

We eat beautiful meals, examine and exclaim and snap away at the Art Deco like Davina McCall on speed.  IMG_2608

We drink Mermaids’ Kisses looking over the raging reefs towards Bantham.

I tell Plum my big fear:

Losing my mind.

The possibility of dying sooner rather than later, of there being no point in worrying about developing those chronic conditions of later life with which I am so professionally familiar, isn’t foremost, although I have considered that in a slightly detached way.

I don’t want to lose my mind.

We sleep with the windows open washed in ozone and the myriad sounds of the sea. If you’re by water, stop, close your eyes and just listen for as long as you can. There is no single sound, no permanently dominant noise but rather a soundscape map that you can follow with your ears as the water moves. Beneath the roar here, there are distant wafts of gentler soughing, tickles and tinkles, the champagne fizz of dissipating foam, a sudden boom as a wave crashes onto the reef and echoes around the mermaid pool cove.

What’s the origin of those crashing sounds? It’s air bubbles that form in rough water and which act as little bells, oscillating in suspension till they pop. Such a beautiful image, bells in the sea.

Hunt

Plum’s also arranged a Sunday dip at Burgh (as if there were any more ways in which a friend could could be wonderful). Around 20 of our wild swimming crew arrive, and I’m able to tell those who don’t know about the tumour, chat, and watch as they frolic in the rough seas. I’d love to go in, but if I get knocked over I don’t have the confidence to know I’ll be able to recover. Best not take the risk today, when it feels that everything is metamorphosing around me.

IMG_2642We retire to the Pickwick Inn for lunch. I show the picture of the MRI scan to various people, and somehow the tumour has been named Hunt, after our less-than-esteemed Secretary of State for Health, he of Don’t be a Jeremy rhyming slang.

“Bugger Off Hunt!” I shout. There’s a period of hilarity as everyone joins in.

“Where is he in your head? Turn around, turn around I can’t see him!” Jackie – kind and gently glamorous mermaid wearer of flowers in her hair, is giving Hunt the nastiest evil eye I’ve ever seen.

“Hunt – out!”

This lunch, and the naming of Hunt with my dear swimmy friends, is where the point of it all crashed past me like the flood tide up the river Aune. Why me (why not someone else??) What for? What do I do?

What I do is blog. I start at once, and tell it like it is. If I do get good news, then brilliant. But it’s the now that I mustn’t lose. I’ll blog about our excellent NHS, which is here for me now, in one of the most difficult and tumultuous weeks of my life; the same NHS I worked for over the past ten years.

This government and the previous coalition are systematically destroying our NHS. They are privatising it, having never had one of those mandates that Hunt is so keen on for the massive NHS reorganisation they enforced in a cloud of inpenetrable legalise and without consultation, via the Health and Social Care Act 2012. They lie and spin, disconnect social and economic policies from their devastating results, absolve themselves of responsibility and instead attack the people who do the work, blaming every failure on greed, laziness and a lack of vocation.

What scares me most?

  1. Losing my mind
  2. Losing our NHS
  3. My brain tumour

 

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.

 

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.

Tuesday, February 16, 2016

It’s 5pm. The duty GP is friendly, professional and kind.

“Tell me what’s been happening”.

What has? It’s hard to explain the meandering weirdness like Dr Who music in the background.

I know for sure I’ve somehow lost my proprioception on the left; that sense of where your various body parts are, the way you know what your hand or foot is doing without looking or thinking about it. The space and time. I recall falling yesterday, no trip, no stumble, just there I was face down on the pavement so that it barely felt as though it had happened, were it not for the soggy  scab on one knee, the grazes on my hand, and the bruise.

I had made an appointment with my regular GP for next week about ten days back, thinking there was no desperate rush.  She’s been so kind, tolerating my increasing woes and slumps of depression, noting I’ve had a difficult year, losing my job through osteoarthritis and a recurring back injury; I am peri-menopausal, struggling to make ends meet with a series of zero hours jobs. She’s checked my bloods at least twice, and spent ages being supportive. My thyroid is fine following surgery in October 2014. I’ve started CBT, and feel bad booking in for yet another moan. I’ve been staying with my parents off and on while I let out my cottage on Airbnb in an attempt to pay the bills. Mum wonders about ME.

Today I took a couple of paracetamol and went to work at the local newspaper, the Tavistock Times where I’m a proof reader. I can barely keep my eyes open. My left hand is strange, I can’t feel any sensation. I look at it and it’s someone else’s, dead.

The previous evening, en route to the local pub with my Airbnb guest, concentrating hard in the rainy dusk, my little van kept stalling, and after reversing into the car park I found we were in an unexpected place. How did I get here?  I depressed the clutch and noticed the left side of my van, scraped and dinked, wing mirror festooned in micropore tape like a mummy half way through a Hammer Horror; I clipped the bank a couple of weeks ago. Sometimes you hit a substantial branch when something’s coming the other way in the lanes.  An unlucky branch, and a perfectly commonplace incident on Dartmoor.

A hint of trouble?
A hint of trouble

I can reverse a van in my sleep, and, as a paramedic till recently working in a largely rural area, frequently have – plus we had huge Mercedes Sprinters, far bigger than my little VW. I pull slowly forwards and the van stalls again. That’s maybe the fifth time today. The drive shaft broke in January. Maybe my usually reliable mechanics didn’t fit the replacement properly? Might take it back in and get them to have a look.

Why won’t the pub door open properly? Is that my purse on the floor? I bend down to pick it up and smash my left shoulder into the door edge, fumble the purse and drop it again, before hitting the door with my right arm. My purse is soaked. I put it in my left pocket, then stand on it. It’s on the floor again.

Drinking a half of Tribute, I feel a bit better and manage to chat to my guest for ¾ of an hour while my brain defogs. As we get up to leave, I drop my purse. I can’t pick it up and bump my head on the bar. How? None of it’s sudden, more a feeling of creeping depletion. It’s not a drunk feeling, more a detached oddness, half in space.

In the van, I can’t get my seat belt to clip in. I have a denim seat cover and try to work out where it’s obstructing the clip; I can’t and pull the cover up with my right hand before using that to find the clip. We pull away, and stall. I drop my guest back and head slowly into Tavistock, nervous.

I’m so tired, a good night’s sleep might help. But I haven’t been sleeping well for months. And I’ve got this nagging headache, neck ache, vague nausea off and on. Maybe it is a viral infection, one of those that knocks you out for a few weeks?

The osteoarthritis is getting me down too – I’ve been touch-typing for 25 years and suddenly I can’t do it. gobbledegook flies from my fingers; caps lock, numbers and symbols, words meld.

Approaching the mini  roundabout, I prepare to change down to second and there’s a flashing glare behind.  The following car has almost run into me, but he hadn’t seemed that close, so I’m unprepared. The world outside isn’t moving in relation to the van. I can’t work it out,  look down. My left foot which should be straight ahead and resting on the clutch, is listing to the right and on the brake. I’ve done an emergency stop and then not quite noticed.

I raise my arm to apologise. It takes three goes to pull away, stalling between. I make it home, get into the drive at a wonky angle and enter the kitchen to get a glass of water ready for bed. I pick up my Macbook and suddenly it’s flying across the room. It crunches into the step and I know it’s smashed. The screen’s in pieces and the case dented. I’ve only just got it running again after the hard drive died at Christmas. Then I’d had a nightmare getting it set up and locked myself out of two email addresses completely, along with several other accounts.  What is it with icloud keychain? I know my password variations, but they don’t work. The old hard drive turned out to be dented, but I don’t know how that happened. Maybe I did drop it, but it seemed okay.

I think back to the other evening. Leaving a meal at a friend’s I couldn’t find my keys. Searched all over, inside and out, in the van.

“Pockets!” shouted my friends.

“I’ve looked!” I have a large keybunch, not easy to lose.

I feel all my pockets for the tenth time, hear a jangle. What’s making that noise? I can’t feel the keys, can’t feel their shape or vibration, have no sense of their being there, no weight against my hip, no sensory reference. With my right hand I locate them.

Then there was the purse, also last week. I’d been to walk my dog and collect her biscuits at Crapstone, and had my purse in my hoodie pocket. I searched high and low. Told Mum I’d have to drive up there tomorrow since I’d obviously dropped it on the moors and it was dark and raining.

“It’s in your pocket! I can see it! You’re worse than me!” She’s laughing.

I can’t locate it, until I feel with my right hand. Then it’s sort of there, but sort of not. I can’t fish it out. I laugh too, but the fear jolts. Is it dementia? I keep forgetting things, lose names, get the wrong words. All on the menopause list of course.

The GP is assessing my neurology; sensation, movement, weakness and so on.  I’ve done similar  assessments many times. I know how it works; get the history, ask all those little questions, check the basics and start excluding physiological causes from blood sugar imbalances to heart or blood pressure problems, to infections; these can manifest in all kinds of ways.  But I know he thinks it’s neurological, coming directly from my central nervous system rather than the result of another illness affecting it. Precisely what  I’ve been trying to avoid thinking. My blood pressure, usually excellent, is far higher than usual, but not stupidly so.

“Do you have an idea what this might be?” he asks.

I do, but don’t want to verbalise it and somehow make it concrete. Stroke, MS, a host of scary monsters. A problem with my brain, my mind, myself. Strokes can be funny, I’ve seen the gamut and they can present in unusual and subtle ways but this has been going on for months, and has escalated in the past couple of weeks so it doesn’t quite fit for me. Maybe it is viral meningitis after all? I’m still trying to explain it away with something less potentially momentous.

The doc sends me to sit in the waiting room while he calls the neurologist at Derriford.

I have an appointment for 9.30 in the morning.

“Lynne, you mustn’t drive”. I should have known that for weeks, but still I carried on.