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…

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Unsettled with benefits

An odd day yesterday, and it’s unsettled me deeply. Firstly, I had a job interview in the afternoon (at Derriford Hospital, natch – got the call to interview an hour after being diagnosed). I’d decided as you know to stop following those tortuous thought-processes between types and grades of cancer, and to wait and see what kind of chap Hunt actually turns out to be.

After the interview I applied for ESA benefit by phone (I have no income other than via Airbnb and can’t work in my usual jobs which are zero hours), but struggled to know what the call taker was after – I kept having to ask him to repeat the question, and he was Scottish, but since I lived there for around 15 years of my life in total that wouldn’t normally be a problem. I somehow just couldn’t tune in.

We got off on the wrong foot, this though due to a more perennial concern – bare naked sexism.

“Title? Mrs, Miss or Ms”

“Ms”

“Divorced?”

“No”

“Well, you haven’t been married?”

“No” where’s this going?

“So then you can’t be Ms, it’s Mrs or Miss, Ms is for divorced.”

“I can assure you I’ve been Ms all my adult life, it’s most certainly Ms”.

“Ah, yes, well you can call yourself what you like, but this form is legal so it has to be right.”

I manage not to say listen here young man.. “Okay, I’m a feminist, and I use the title Ms because I see no reason why I should be identified by my marital status when the same doesn’t apply to men.”

“If you like, but you’re not divorced! If I put that here and it’s wrong, legally, then your benefit might be delayed.”

“I’m Ms, it’s on everything I have; I am and will remain, Ms!”

“Okay, I’ll do what you say, but it should be Miss if you’re not divorced.”

Whatever

Then we fall up on the advice I’ve received from the Macmillan benefits advisor who was incredibly helpful so I knew what I was entitled to. Essentially, I know I’m not entitled to one of the benefits and was advised to go for ESA, the NI based one.

“The Macmillan they’re nice, yeah, but they are NOT BENEFITS TRAINED!”

“Okay, just write what you think then”. I need a cuppa.

“But I’ll have to ask you the questions, they might sound a bit weird, right, but just a wee yes or no for these.”

And so it went on. How much of the comms fail here was to do with my mental state, how much with Hunt and how much the elision of the DWP culture and an employee with a somewhat antideluvian approach to gender?

All this for £74 a week, a safety net aka pittance on which I have no hope of making ends meet and which I am claiming by dint of having made regular National Insurance payments to the government over decades. He ends with a long and rambling official declaration which includes details of future work assessments for which I will have to attend appointments and also provide a ‘Fit Note’. Ha! That’s really the point isn’t it? This system has been constructed to make me look and feel like a shirker, a fit fake scrounging off the rest of you hard-working families. It’s a fucking travesty. Throughout most of this interview an image of Iain Duncan Smith’s fat, shiny face with 37 quid’s worth of breakfast on expenses dribbling down his chin is lodged in my brain. Incompetent, patronising, spawn of the devil.

Then as if by magic a gorgeous box of iced flower chocolate biscuits arrived from one of my swimming friends. Take that IDS. I know kind and loving people. But what if I didn’t?

So, Mum and I went to the cottage to light the wood burner and finish cleaning for the incoming guests, via Tavistock, where I bought some senna tea and prunes, because the roids are blocking my bottom. I must not, according to my brain tumour surgery guidebook, strain or become constipated. Each time I have a general anaesthetic it’s a full week till I can poo. So best get onto that at once.

The big slump

In my post box, barely palpable among the usual wodge of junk mail, is a letter from Derriford hospital; I read it while I built the fire. It’s a copy of the neurologist’s report from Thursday, and there it was in black and white – the part about lung nodules (will need to be addressed later by oncology) and the probable primary brain lesion, space taking, high grade (she is aware of this). So there is more than a suggestion of both metastasised cancer and a primary brain tumour. A pause in my head and a pause in my breathing. I knew it all, he’d told me, and I’d somehow worked my way back around to unhearing it. So, I lost it with my neighbour over dog shit in front of the cottage, and Mum had to go and apologise (no way could I, but how bad to have to get your Mum to sort your tantrums out for you).

The doctor running my earlier interview called then to tell me I’d been selected to go on to the training stage as a GTA, a developing role where women work in pairs using their own bodies to teach medical students how to do gynae examinations. He mentioned in particular my ‘enthusiasm’ which was partly due to the lunchtime steroid rev, and I was struggling not to leap up and run around the room halfway through. I’m delighted to have moved on with the job, because it’s such an important and interesting role, through which I feel I could do something socially useful. I don’t know that I’ll be able to take it, but I came clean and they were very understanding. I’ll tell them what’s what when I know, and move from there. But I would have understood had they not taken me on. It’s lovely to know that I have something positive to look forward to, maybe, at least.

So a day of ups and downs and surreal interludes. I’m noticing more and more that I’m actually unwell; while I knew there was something wrong, I still had that propensity to explain away, to try eating better, push the exercise a bit. To think I would get better? Now I know that’s not going to help other than to keep my body working as well as it can for now.

I’m less liable to drop everything (thanks roids), I’ve noticed a few minor things that also trouble me. I can’t write very well (the right is my unaffected side) and signing the consent yesterday was an odd experience – my signature is normally big and loose, but it didn’t flow and I wasn’t connected to it. It neither looked nor felt like mine, while I would have recognised the handwriting. Mine but not me. Thinking back, my writing for the proof reading was becoming constrained, and I was crossing out more. So there’s something going on there. The right parietal lobe is where Hunt lurks, and these are all functions associated with this area.

I can no longer text without a concerted effort, and I don’t have the concentration to work out which of my wayward digits is causing the problem. I’m typing this, with lots of mistakes, by slowing down and not using my left pinkie. I need to set up speech recognition, but now have Windows 10 and the thought of having to do gags with some fake humanoid IT geek called Cortana Jo frankly makes me want to weep.

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.

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.