The theatre of cancelled ops

The little boy wants to know whether he can go to school yet; his Mum is waiting for her op too. She is clearly unwell and is distracting the boy, smiling at him. I’m sat, gowned up and pressure-socked, fresh from my meeting with the anaesthetist in which we have talked in great detail about how he will manage the vomiting I get post-surgery, and pain relief because I’m allergic to morphine. I feel reassured, and I tell him so. I am hopefully to be in the anaesthetic room for 0830 and the theatre for 9, although there might be a short delay as we wait for a bed.

Ah, the B word.

The time begins to slip by. Patients trickle into the blue bay (ready to go), and a couple of go off for their surgery. Gaggles of green-gowned theatre staff pass in the corridor, carrying notes. Interesting that it’s called theatre; I guess it’s because those surgeons of old used to perform operations in front of an audience. This is also a kind of immersive theatre, those little tableaux, separate yet in it together, wondering what the other is in for. There’s doubtless a dramatic template in our heads. My old ambulance boss, Dougie, once asked a doctor in the ED what was the most difficult part of his job; Holby bloody City was the reply.

So, we talk to our relatives or friends, half watch the BBC news, keep half an eye on each other. From time to time a surgeon or anaesthetist leads another patient off to make their pre-op notes. Nurses and HCAs, smiling and chatty, pop in and out and talk to people, bring pre-op medications. I’ve already had my paracetamol. I’m not worried, just glad to be on the way to knowing what’s what, tempered by the knowledge that in the near future I will know and there will no longer be room for that little miracle I’ve been carefully holding in a little pot in my head with lid screwed firmly down.

The little boy and his Dad say goodbye to the woman just down the row; the man clutches the top of her arm and squeezes for a couple of seconds, pulls her towards his chest. She smiles. The little boy, red school jumper (he loves the badge) and big winter coat, holding hands with Dad and walking away. I tell her how lovely the boy is, and we strike up a conversation. I have to ask her permission to talk about it here, so for now it remains between us.

The woman’s surgeon appears, asks her to come with him. She returns with a nurse who is visibly upset; her all-day surgery has been cancelled because there is no critical care bed. She knew when she saw the surgeon’s face. Her surgery should have taken place now, within a strict time-frame after the end of some other treatment. Now it will be another two weeks at least.

A nurse comes to tell me, at 1100, that there is a bed meeting just starting.  Someone will come and talk to me when the meeting is over. It’s been a slow, Hunt-like dawning, the signs and symptoms accruing into the jolt of knowledge that my operation is in jeopardy despite having been first on the list in theatre 4.

At 1215 a bed manager appears. We go to one of the consultation rooms.

“Good news or bad news?” I ask.

“Bad news, I’m sorry”. He shakes his head.

He is clearly wondering whether I’m going to be angry. I’m floating, having known this was coming, and a lump of something clunks in my chest. We sit, and I ask the bed manager where the problems are.

He is open, apologetic, a kind man.

There is a flood of medical admissions at Derriford, which does not have the spare bed capacity to manage. Social care of course is in crisis also and we are stuck. There are two emergency neurosurgery admissions including a trauma, which of course get the theatre slots based on their clinical need. This isn’t about patient choice, or a truly 24/7 NHS, this is about saving lives. There are a couple of more urgent cases than mine which have gone into another theatre; again, cases whose need is of a higher priority. Mine, and presumably some others in similar need, have been dropped.

“I could let you sit here all day and hope, but in the end there will most likely still be no bed.”

I should receive a phone call on Monday to tell me if there’s any chance of surgery next week; but that again depends on clinical need and the bed situation. I thank the bed manager and tell him that I don’t blame the hospital at all for this. I really don’t. There is one proviso, however – I’m going to blog about my decision to go to the BBC with what happened later, and Derriford hospital really must at some point come out publicly and explain the situation to all of us. How are we to know the real causes of this crisis when everyone is apologising and not telling it like it is?

As with all these issues, the picture is complex and nuanced. Yet here we are, with these poor staff buffering the ire of upset patients as they tell us that we can’t have our expensive surgery and that the surgical teams who want nothing more than to do a fantastic job and who’ve prepared and planned and explained, are now as angry, stressed and upset as we are. We had talked, the woman and I, about trusting our surgeons. I’d made the point that they’re all obsessives, immersed in their art and in their science, in their patients, in the planning and the discussions and the human fears. These aren’t people who are motivated by money.

What has this relentless financial framing of everything done? All the grand political speeches about efficiency and management and patient choice, and unaffordable costs to the taxpayer. We are told endlessly of the legendary effects of competition, enforced tendering (enshrined in the NHS by the Health and Social Care Act 2012), the driving down of costs. You can’t make a silk purse from a sow’s ear.

It’s resulted in a simplistic, self-perpetuating notion of efficiency and target cultures, a hogwash of corporate branding and a grand FUBAR of squandered surgery, buckets of cash effectively chucked down the drain. The waste of today is obscene.

It’s left people in dire need floating away on a tide of political spin and lies, blaming each other while the offshore hedge funds that are often behind ‘investment’ in our public services channel all our money away in order to fulfill their purpose in life – to make a profit, preferably without the annoyance of having to pay any tax. How is that good for patient care? Why this profiteering model and not one of social enterprise? Look to our tangled political culture of donations the vested interests for your answer.

The nurses offer me tea, a sandwich, biscuits. They say that the day case ward over the way is now a proper ward with 12 beds, in an attempt to up the capacity. But they’re operating on the edge, with no leeway, no resilience in the system. They think the hospital should cancel the routine cases for a couple of days, let it all breathe. They are upset, empathising. I go off on a rant. They tell me I’m allowed.

Meanwhile, in parliament, Caroline Lucas had sponsored the NHS Reinstatement Bill, developed over the past couple of years by Professor Allyson Pollock.  With a cross-party group of MPs in support (but no official backing from Labour – why not?), it was being filibustered by Tory MPs. Smug at their cleverness, waffling about deporting foreigners. They don’t like the bill, so they talk it out, all part of parliamentary process in which we cannot interfere; it’s a tradition, a religion even.

This link explains that we now no longer have an NHS. And we don’t. The bill was our chance to get it back.

So a challenge: venture from your grand Gothic theatre and sit here on our lowly stage, you puffed up parliamentary performers, makers of pig noises, and farters in the general direction of democracy. Join us, in the blue bay on Fal Ward, and watch the fear flitting across faces, listen to the conversations, the little jokes, the stories. Then account to me, and to my new friend, for what you are doing to our NHS and our democracy. We are angry. Come and sit with us. Come and look us in the eyes.

Incidentally I have yet to receive a response from Geoffrey Cox QC MP. I’m going to ask to see him in person. I’m going to look him in the eye and hold him accountable.

 

 

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The dog formerly known as Bun

IMG_2701“Bun Bun! Come!”

I attempt a whistle, and for the first time in weeks manage to make a fairly piercing sound (thanks again roids). You’d never know, however, since Bun continues to hoover up rabbit poo on the far side of the field and betrays no sign of having heard me whatsoever. I try again.

Oblivious.

I pull the bag of sausage slices from my coat, and shout:

“Sausage!”

Bun comes bouldering towards me, 300m at full sprint, a polar bear after a seal. She skids to a halt and sits, head and ears perked and tail straight back, so I can drop the sausage into her mouth.

Honey Bun came to me aged 3 1/2 as the victim of a family breakup, loved but largely untrained and with little in the way of socialisation with other dogs. She’s now 9, and is well-behaved, loving and generally gorgeous, funny, tolerant of other dogs, but with a sniff and food obsession and high intelligence commensurate with her labrador and standard poodle ancestry. She sometimes needs a firm hand, as in this case, where usually I would go to her and make her come to me, then run through a few commands just to remind her who’s boss (?). She is trained through constantly reinforcing wanted behaviours, and then tailing off the treats so that the dog is never quite sure whether she will get one but thinks it’s worth a punt.

I have mentioned our worries about her during the period since December where she was clearly upset by the changes in atmosphere and the moving of things from one house to another, and over which I now know I was unwell. The result of this is that she’s been fed more treats and generally overindulged.  Yes she’s spoiled (another memory is coming to stay here for a night and telling Mum I didn’t need clean bedding to which she replied: “But that’s Honey’s bedding”; Mum had been making up the bed in the spare room for her with her own duvet, cover and blanket, each time she stayed which was often then, when I was working shifts).

When we discuss dinner, Mum will say “Honey and I are having liver”, or “I’ll get a pheasant out of the freezer for Honey”.  That’s partly  because we love our dogs, and partly because my farmers’ daughter mother considers dogs who live in veggie homes to be nutritionally and emotionally deprived. Yet Bun is still expected to behave and knows her boundaries.

M and M arrive and Bun is in the garden. M calls her to say hello.

“Bun!”

She blanks M completely. I tell M about the sausage call.

“Sausage!” she says.

Bun screams into the kitchen, cornering like Guy Martin, and sits by the fridge.

So, as an unintended consequence of my illness, the dog formerly known as Bun now answers only to Sausage.

I imagine similar stories relating to kids.

Beds and blurring

I’d tried to rationalise the blurred vision, and was still unsure about what to do by the morning yesterday. An optometrist I know had contacted me to say she’s never heard of cataracts developing that rapidly, and to get my visual field checked by an optician as the tumour could be affecting that so I felt quite reassured.

I decided on the GP, partly from knowing that Derriford would be in full Monday morning chaos sorting mode, and partly because while I want them to know I’ve developed this new symptom, it felt more appropriate to get the other possibilities checked out locally. Also, the only thing that would stop it if it is Hunt-related, is removal of the tumour which they are doing their utmost to arrange in the fallout from £4.5billion of cuts to social care to the acute setting.

I was given a duty doctor appointment for 1130, where I saw another excellent doctor I know mostly in a professional capacity from his work for Devon Docs. He worked through my concerns starting with the breathlessness and checked my chest (clear as I thought) and general obs. My eyes looked good, and I was able to see at the peripheries.

We talked about the situation, and I explained that I’m half thinking these symptoms are in my head in more ways than one, as I continue to circle with the two top choices between a primary brain tumour and mets.

He ran over the very many side effects of dexamethasone, and mine are there. So the doc’s conclusion is that side-effects are top of the list, but that we’ll exclude a few other causes so he takes some bloods to check for various other problems including anaemia which is another cause of breathlessness.

I ask him about the blurring and  its specific cause. He’s not sure, but suspects that it has to do with changes to the pressure in the eyes, which are filled with jelly-like substances called the vitreous humour and the aqueous humour. Seeing the shifts in fluid in my body, it’s easy to translate into small changes within the eye that begin to distort the vision so that made total sense.

The bad news there of course is that I need the steroids. All medications have unwanted side-effects and risks. They are given on the basis that the benefits in a specific situation outweigh those negatives. In my case there’s no question in my mind that being a bit bleary-eyed is preferable to the problems I was having over the past few weeks and even months. So I am going to have to deal with the blurriness, potentially for a prolonged period. Already it varies, but I’ve only had a few hours of being unable to read completely. Otherwise it’s like the period an hour or so after you’ve applied viscous ointment to an eye and there’s a thin film over the lens. It’s only really noticeable if I try to watch tv which I haven’t been doing much of in any case, though I did desperately want to watch Raised by Wolves. I have Radio 4 podcasts, a cd book from my friend L, and my music. M has set up my laptop to read text (while other M shaved my legs, though I probably won’t notice the hair now).

I called Tony my nurse late afternoon and left a message, but it’s feeling pretty bleak in terms of bed prospects. While the neurosurgery department have been wonderful in so many ways, I do have this one criticism about information. I understand absolutely the situation they are in, the frustrations, and no doubt the many other people who are in the same boat, or who have had their less urgent surgeries cancelled due to events beyond the control of the department. Magnify the way I’m feeling by all those people, and it’s a whole lot of stress. Might it be possible to provide some kind of regular update for those of us strung up and swinging in the winds of this bed crisis? Perhaps a daily phone call, or a message board on line, or an email, even giving a simple message of we still don’t know? That would make a huge difference to me.

One other momentous event happened yesterday, which was an overwhelming day all round. More on that later. Now I’m off to give Sausage her breakfast.

 

Buck passing

“I understand you have a problem with Derriford Hospital?”

The call is from Geoffrey Cox MP’s office. I’d though I’d been pretty clear yesterday that I have no problem whatsoever with Derriford Hospital, but this of course is the mindset of our political class. Where does the buck stop?

“No, I have no problem whatsoever with Derriford Hospital, nor with anyone else in the NHS. I have been treated amazingly from the first visit to my GP till now. I have a problem with government cuts to social care which is the prime reason that Derriford is being forced to cancel urgent neurosurgery.”

“So what would you like Mr Cox to do?”

I explain again, far more succinctly that I did yesterday, that I’d like to know Mr Cox’s thoughts on the situation with the social care crisis. I’d like to know what the government is doing to solve this crisis.

I would like to know who in government will take responsibility for the situation with the NHS and social care.

I would Mr Cox to ask Jeremy Hunt to take responsibility for the current state of the NHS, and to identify the issues and address the funding gap and the bed shortage. This is his job. I would like him to manage the situation without blaming anyone else, whether that’s trusts, or junior doctors, or nurses.

“I realise this is a political point, but it’s a key political point. My personal situation is the direct result of the failures in government health and social care policies since 2010.”

I tell the aide that I’m not doing this to queue jump, to kick up a stink about my own situation. I’m doing it for all of us waiting for urgent neurosurgery this week, and next.

I can expect a letter, the woman says.

 

Still no beds

I’ve still not heard about my op, and so I call Tony my neuro oncology nurse. He says it’s impossible to say when the surgery will be, as Derriford hospital has had to cancel 90% of its neurosurgery ops this week. I will hear as soon as there’s news, he promises, but it might well be next week now.

Bed-blocking is a key issue, and this is bound with 6 years’ of cuts to social care budgets and the concomitant increased pressures on district general hospitals who have to take up the slack. If there is no care there, and the community hospital beds have been cut repeatedly, managing frail elderly people becomes increasingly a case of shoving them into ‘spare’ beds which exist for acute conditions, surgery and so on. To have 90% of the neurosurgery in a top district center cancelled in a week is pretty devastating.

For my type of diagnosis, NICE guidelines state that I should be referred within two weeks of the diagnosis; this was easily exceeded and I saw my first neurosurgeon within 3 days, specifically because he did not want to leave me hanging around over the weekend without having discussed the plan. He (Mr Titus Berei) then called me personally on the Tuesday morning to tell me he’d spoken to Mr Fewings who is now my consultant. Mr Fewings saw me three days after that. So, nothing but excellence and compassion there. Ditto for the referral from my GP, which was done at 5pm on the evening of my request for an urgent appointment, and the full neurological assessment had been undertaken including all the scans and bloods by 5.30 the following afternoon in the AMU at Derriford.

Now, the guidelines state they have 31 days in which to start treatment, the first part of which is excision of my tumour. Until such time as this can take place, I have no histology, no certainty about what I’m dealing with, and no treatment plan. Imagine hanging there, swinging on gibbet hill, waiting for your neck to snap. Derriford hospital neurosurgery department was ready to smash that target too, were it not for circumstances outside their control, circumstances caused entirely by austerity, government mismanagement of the NHS over the past 6 years and swingeing cuts to social care.

That, bearing in mind my mental state, resulted in a surge of anger. Anger that the real story is not out there. Rage that this government continues to lie and spin and hide evidence and divert the blame onto Trusts for financial mismanagement, stopping bursaries for nurse training, attacking junior doctors over some ridiculous meaningless mandate for a ‘truly 24/7 NHS’ that was predicated on the willful misrepresentation of a report claiming 16% more deaths for those admitted at weekends which even the report’s author countered.

Meanwhile, notice how Jeremy Hunt and Cameron et al take no responsibility, ever, for their briefs. They are paid public servants, yet they are not accountable for their mismanagement of the NHS and other public services, it’s always Labour, or Trusts, or feckless poor people, or doctors, or nurses, or people expecting to be paid fairly for what they do. The (un-mandated read my lips no top down reorganisation of the NHS) Health and Social Care Act 2012 actually removed the responsibility of the Secretary of State for Health to provide free health care for the population. Are you angry? You should be.

Having spoken to Plum this morning, I had posited the idea of contacting my (Tory) MP, and she encouraged that idea strongly. So I dialled Mr Geoffrey Cox QC MP’s surgery in Tavistock and launched into a frighteningly coherent rant through lips which are today especially rubbery, and which I feared would simply degenerate into the tears I have yet to shed (because if I start to cry, I suspect I might not be able to stop).

I have asked several key questions, and made some very specific points about accountability, transparency of government, ideological actions and ignorance of, misrepresentation of or burying of evidence.

I have asked what is going be done to fund social care so that this type of nightmare no longer occurs. And I won’t take the £600k bail outs currently being handed out to Tory-run councils only as an answer to that.

I have asked why we have among the lowest beds per head in Europe.

I have asked how exactly government policy is aiming to deal with the current crisis and who in government is going to take responsibility for it.

I have asked for absolutely no spin or bullshit, nor devolving of blame; I have asked my elected parliamentary representative for straight, open answers on the situation as he sees it and the actions that his government is going to take to address them.

I have pointed out the stupidity of the 24/7 NHS in situations such as this. I didn’t mention the shambolic and pathetic attempts by the Dept of Health advisor the other day to explain in corporate business speak to a committee of MPs exactly how they had failed to cost any of the 24/7 NHS, nor to account for whether or not the £10 billion so-called bail out of the NHS included this money.

I did point out that junior doctors have my support, 100% (the strike next week might potentially affect my surgery too, but I’ll take that), and that this is not about money, it’s about saving the NHS from destruction prior to privatisation.

I warned Mr Cox to be straight, since as a paramedic I know what goes on, I know first-hand the effects of coalition and Tory cuts so he can’t fool me.

I pointed out that anyone can suddenly find themselves in my position – and that’s when you need the NHS.

I mentioned that had we been under an insurance-based system as in the US that I would most likely be sunk now (the least efficient, most expensive, and least equitable system in the world really only seems like a great model with which to replace our incredible, equitable, cost-effective NHS when you’re a politician with personal interests in giant private healthcare and insurance corporations, as numbers of our representatives of all parties are, doesn’t it?)

The NHS, still surviving after years of big investment by Labour, was still a great value system in 2014, but note the plummet to  28th in the world by this year. Now the spiral of crises in funding and beds is hitting terminal velocity; yet it’s not the government’s fault. Regardless of that, if I lived in the US, and if I had managed to get insurance, it would have been massively expensive and studded with exemptions to enable them to avoid paying my bills because of my past medical history.

The advisor I spoke to took the rant with good grace (and rather too many casual ‘okie dokies’ if he is, unlike politicians, subject to a performance review target culture) and is passing the information urgently to Mr Cox, who will be looking at the situation in Derriford, and then I hope addressing some of my policy points and – crucially – the social care crisis.

I’m still feeling rather calm, but it would seem I’m going to really need that shrivelling prayer.

Oh, and I’ve just posted off my DVLA form B1 and driving licence to voluntarily surrender it on medical grounds.

 

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.

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.