Sharing

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I’m half floating, and half leopard crawling through mud beneath a cam net. Yet when I wrote Days of whine and roses, I ended on a floral positive – I just cannot help myself – and felt that endless cycle of effort exert itself, the wanting the next part to be over, conflated with knowing I’m wishing my short life away.

Then this message arrived, from a woman I’ve never met and who became a Facebook friend via wild swimming (what else), and who also broadly shares my political views. She’s given permission for me to blog it; I very nearly cheered in a hurrah kind of way, like the deep purple irises bursting from the top of my flowers.

Shared experiences don’t have to be about the same types of life-crises, or about that imaginary hierarchy of illnesses, the one that makes people apologise for daring to compare when they feel their own life event is less significant. It’s not, and that’s not how it feels when you have to live through it: I remember so many times being unable to sleep or eat for worry over an upset that a week later was gone, sorted out, and of little consequence; long chats with people who have faced worse than I ever had, understanding their differing perspectives and how they reached them; potentially serious but recoverable illnesses, in which I was faced by a difficult but finite period of feeling unwell and physical and emotional recovery; worry about ageing and my deteriorating fitness: endless discussions with friends about dementia, and arthritis, and osteoporosis, and how much wine we drink; all of these brought me to the place I am now, hard cored the track I’m stumbling down.

Sharing experiences is so important on a human level, as is that acknowledgement of the need for slumps. The indulgence of the negatives. It’s a beautiful message.

Birdsong, and another day.

I’ve just read ‘Whine and Roses’. I think some of your gloom may be post-op blues (see, there’s even a name for it); you’re bang on time… Mine hit me in waves after my hip replacement, on day 3 (mostly withdrawal from the surgical drugs, I think), day 11ish and week 5. It’s well described in the hip and knee replacement forums, and very widespread. I think it’s it combination of things: drugs, or withdrawal from them; relief after confronting surgery; fear of what’s still to come; sleeplessness and exhaustion; loneliness; grief; and in some cases – definitely me and I guess you – loss of independence… I wept and wept… And you have far more ‘real’ reason than I had.

It’s difficult to handle, but it’s probably what you need. A sort of emotional tempering, like water on heated metal. If your news is bad, you’ll need resilience, and you’ll have more of it if you’ve sat down with your fears and got to know them. If your news is good, well, your feelings need honouring anyway.

Liminal states are difficult, always, and often scary. They are also magic times, I reckon, since you are closer to truths and wisdom, if you let yourself be. Your instincts are good, but your usual coping strategies aren’t available in the same way: you know to “open the window and let the storm in”, emotionally as well as meteorologically, but you need to find some alternatives for walking in the rain and swimming, temporarily at least. Jacuzzis and drawing were my new discoveries… Yours will probably be different…

The summer following my surgery was transformative for me. I’d never been bored before, since I had always been an avid reader, but I stopped being able to read. I hadn’t had two hours to myself for more than a decade, since I’m a working single mother; but that summer, hours alone stretched into days, sometimes. I’d never just SAT, but sit I did, in the sunshine, doing nothing but healing. Quite extraordinary. I was like some kind of pupa, only recently a wriggling caterpillar, not recognising herself, waiting to emerge as – well, maybe not a beautiful butterfly – let’s say a moth!

We’re used to thinking of boredom as something to be prevented or kept as short as possible; but that summer, I discovered that boredom can be transformative…

I’m waffling now, so I’ll stop. What I really want to say is that, although you’re in the loneliest in-between place, it’s ok; it’s where you’re supposed to be right now. If that doesn’t make sense, just ignore me!

Sending love and courage. Xx

I also received a beautiful card that arrived yesterday via Moorgate Ward: it’s the photo on the top of this post showing the path to Bantham beach from the dunes, a view I know so well, and where I walked just a few weeks ago. It’s from an NHS worker in the Midlands who follows my blog, and who thanks me for telling it like it like it is. I thank you back, NHS worker, for your lovely card, for your support, and for carrying on with the bigger fight, to save our NHS.

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Days of whine and roses

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Here goes then; Andy Williams on the iPhone and an emotional emitus of sorts. I’m trying to be honest about how I feel, but sometimes it just isn’t going to work and I have to divert away because I don’t know how to control it, nor what to think, nor how to express my world at the moment. I’m not even sure where I am, other than it’s a liminal sort of place between the me that used to be, and the me that is very not as she used to be.

My world is here, in a house that’s not mine, with some of my things, and my parents and dog. I can’t drive,  or walk far. I’ve not had many physical visitors since Op Hunt Saboteur, and I’ve not felt engaged in any real sense with people other than occasionally; it’s like looking in through windows streaked with years of grime. I’ve been angry rather than sad, knowing it’s not going to be good news next week, yet not really knowing how bad it might be and how I’ll react if that’s the case. I’ve picked up on campaigning Facebook posts, something I really didn’t want to do, and become involved with people who are cross with me which I can’t deal with. It’s a struggle to type them, but I can see to read online far better than I can in a book. I’m so angry with the government I can’t really think, the scale of their perfidy in selling all our assets off. Fear at what they’ll do next, then the thought that actually why do I care? I doubt I’ll be here for the revolution.

Displacement of course, but then I’ve always been displaced by injustice. I’ve still heard nothing from Geoffrey Cox QC MP. But I have so many other administrative tasks to sort out, and I can’t get my head around them at all. One is my tax return, due now I think. Apparently I’ll get fined if it’s late, but it’s impossible to speak to them without hanging on the phone for literally hours which I can’t do either. The second is benefits because I’m afraid I’ll lose my £73.10 per week if I do Airbnb in an effort to keep my cottage although it’s only going to pay the bills, and maybe not always in full.  Then there’s the mortgage cock ups that I thought I’d managed to address with Nat West, who have admitted the repeated failure to take my DD was their fault, acknowledged that I wouldn’t have noticed what with everything else going on in my head, and paid me £50 compensation, before sending me a letter telling me that credit reference agencies will be informed of my late payments. I ended up crying.

Oh, and I have to complete my work assessment for the DWP by 6 April, which also involves knowing what treatment is next. And I have to tell them about Airbnb, which means I need another appointment with the Macmillan benefits advisor. So I woke up worrying this morning about that.

My world is the same every day. I wake at about 3am, I get a mug of ginger tea and oatcakes with some cheese. I fiddle around with my iPhone on twitter or Facebook. I blog or write about whatever’s in my head in a document that I might use parts of in another blog. I wait for the first light to creep beneath the blind, for the bird band to strike up. Then I get up and make tea and toast, take my steroids and other meds.

I have breakfast, Mum tries to chat and I’m grumpy because I hate mornings and want to be left alone. Then I try to be chatty for a bit. I go back to bed, doze or sleep for a couple of hours. I get up, take more steroids with more food, go out with Bun maybe; wander really slowly feeling the air abrasive in my chest, count my respiratory rate (higher than usual), wonder what the nodules on my lungs are.

I go back to bed in the afternoon if I can, sleep or doze, think a bit, Facebook and Twitter, mostly political. I get up for dinner, chat for a bit, go back to bed sometimes, sometimes just sit here and listen to music. Then I have a snack and go to bed at 11 ish till 3, and it all starts again. I am terminally bored.

My left side is noticeably weaker as of Friday, and my arm and leg start to feel hollow. By yesterday I had realised my left arm had no muscle tone at all, and my left knee started to buckle. I think often about what to do. Both hands had developed a mild tremor. I’d ended up having to clean my cottage with Mum, and although I did the light work I felt shattered. But it was developing before that. Prime suspect is the tailed dose of steroids; is the brain swelling returning? I feel unsafe on the stairs. I already know that dexamethasone can cause myopathy or muscle wastage quite quickly in some people, especially if they develop Cushingoid features which I most certainly have (Cushing’s syndrome of moon face and belly fat, rather than the more cadaverously dashing Peter Cushing). But I have been tailing off and on a low dose of 2mg twice a day for four days, so that’s less likely.

My left arm is noticeably smaller than the right, although I still have a pretty good bicep on the right. My left knee has swollen from the osteoarthritis and the muscles are not defined at all, though I can still see muscle on the right. My face is more numb than before (the inside of my cheeks and mouth have been that way for some time, but my rubbery mouth had improved with the steroids). I dribble water when drinking, twice. When I flex the right arm, the bicep feels strong. On the left, I can’t feel it at all. My left hand is also more numb.

I think it has to be some returning cerebral oedema. The limb deficits I have are left sided, apart from the weak and strange writing, so my left side is going to be more affected by weakness in any case. But the right side isn’t feeling much different as far as I can tell. I consider calling the out of hours GP, but decide against it for now.

We’re off to lunch with my brother and family, and I double my lunchtime dose of dex back to 4mg. We have a lovely meal of lemon sole Jamaican style with rice and peas and plantain. He’s a mean cook my brother. I’m still wobbly as we arrive home, but I can feel some tone in my left bicep. Before I had that odd sensation of energy vanishing like water draining from the muscles. By 6 I feel more steady on the stairs, and the hollow in bicep and knee has started to fill. A most weird thing, and a huge relief. By this afternoon, on the doubled dose, I’m able to walk Bun a little way on the moors.

The weight isn’t going to help, but I can’t stop eating. My vision had improved to vaguely smeared, but it returned to blurry most of the time within a day.

Looking out of the window at the hammering rain that heralds Storm Katy, the wind begins to bluster. I feel that need to sniff the air and get my hair tangled in the tempest, to be elemental. But it would probably blow me over, and I’d have to get past my Mum, who at 78 is stronger than me. I wonder whether I’ll ever feel okay again, enough to walk up tors, or swim in a strong current or jump into the river. I open the window and let the storm in.

This week I’ve resolved to see people, if only for a short time. It’s the endless sameness, the need for sleep every morning and afternoon. I sleep. I spend most of my time in the bedroom, like a transitional teenager.  Sausage, the dog formerly known as Bun, spends the day on my bed with me, then the evening downstairs with Mum and Dad.

Part of the problem is that I can’t read books or watch films, something I do normally. I can see screens better than books, but can’t concentrate enough to sustain it. The audio books make me fall asleep. I listen to Radio 4 and music.

My music choices are odd too; I’m not usually into folk, but have somehow downloaded a fair bit, including some of the kind that I hate involving fair maidens with child and dastardly men who skip away scot free. I’ve discovered Purcell’s Dido and Aeneas with Jessye Norman as Dido, and play that over and over (thanks Fi). Madame Butterfly is always on my list, and that’s remained. Then there’s Anthony and the Johnsons who are calling to me at the moment; Andy Williams, Dusty, a bit of Adele, Birdy, Kate Bush, Eels, Fleet Foxes. Rachmaninov. Bowie. Nadia Reid, Tanita Tikaram, Ricki Lee Jones, Mozart’s Requiem. Also some Sicilian music I discovered via watching Montalbano on BBC 4; Olivia Sellerio, and the amazing Requiem by Fratelli Mancuso and Armoniosoincanto which is Sicilian folk and Latin choral music combined. It seems to replace my emotions rather than eliciting them; vicarious unfeeling.

I want this weekend to be over. I know I’m not going to hear anything till Tuesday at the earliest. But I don’t want to wish time away. I received a beautiful bunch of tied flowers in the post, from my school friend Pip’s parents; bay leaves, yellow roses, white somethings and purple fresias and irises. They lift me when I look at them. My colours.

Nurses and other expenses

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I had a stressful day on Friday that I’d rater forget about, related to extraneous events that I just can’t deal with at the moment.  I’ve posted a happy picture of me and a  friend swimming last May because it makes me smile.

Luckily, or not, I’ve been diverted by the nurse shortage, which is of course due entirely to events outside the government’s control, and for which their policies and short-termist swingeing cuts cannot possibly be held accountable. Oh, and they’ve been saying, ad nauseum in answer to any number of questions in parliament, just how many ‘extra’ nurses (doctors, paramedics) there are since they started running the show.

Top of Hunt’s list of reasons for the NHS’s staffing problems, is the rising bill associated with fed up staff whose pay and terms and conditions have been eroded significantly since 2010. These staff, many of whom had worked for the NHS for decades, suddenly started to up sticks and display their greed and lack of compassion and vocation by working via private agencies instead of the NHS.

Hunt doesn’t like this. I thought that was how the great god Market was supposed to operate, Jeremy? Otherwise, why are you privatising NHS Professionals? This is the public, in-house staffing agency which makes a profit for the taxpayer. Why, you could even develop it, drive those agency costs down with another nice bit of enforced competition (see Health and Social Care Act for how that works, though it is rather expensive at £5billion a year from the NHS budget just for competitive tendering).  I’m beginning to wonder about Hunt’s brain. Surely blind adherence to dogma and an utter disregard for logic precludes such high office? Hunt is certainly having the kind of effects on the NHS that his tumour namesake continues to exert my own life. The things he’s made me do.

The nurse shortage was highlighted by a newspaper report the other day and it’s a key area of concern not least bearing in mind Hunt’s inexplicable decision to stop nursing degree bursaries and replace them with tuition fees and loans. But the whole story is far more shocking than that.

This report raises a host of relevant issues. The Migration Advisory Committee has recommended that nursing should remain on the shortage occupation list allowing non-EU nationals to be recruited from abroad. It also argues that that the Department of Health (DH) and the NHS failed, with no good reason other than the perceived need to save money, to create enough nurse training places.

It’s estimated that 9.4% of nursing places in England are vacant; and there were 17% cuts to nursing training places under the Coalition government which was a “significant contributing factor” to the current shortage.

The NHS training body Health Education England wanted to commission 3,000 nurse training places in 2016/17. But as a result of “funding constraints” it only commissioned 331 – one tenth of what was needed.

The MAC report concludes:

“It is clear to us that the current shortage of nurses is largely of the health, care and independent sectors’ own making. They did not learn the lessons from the late 1990s/early 2000s when a similar shortage (and reliance on foreign nurses) occurred. Almost all of these issues relate to, and are caused by, a desire to save money. But this is a choice, not a fixed fact. The Government could invest more resources if it wanted to.”

Then a quote from a Department of Health spokesperson:

The Department of Health is “delivering on our plan to train more home-grown nurses”.

What? Could anyone in possession of any of the facts, or indeed a functioning brain, say anything more utterly stupid? It’s no wonder everyone was asleep till the budget woke them up.

Unfortunately, yes, they could. I’m not even going to let you guess who said it:

Hunt in the BMJ: “We’re reforming the funding of nurse training in order to make sure we can afford to train more nurses.”

I suppose he’s referring to his aforementioned plan to replace bursaries for nursing training with loans and tuition fees; bursaries that allow many older people with valuable life experiences to train as nurses, at a time of recruitment crisis and shortages. A policy that will not only actively discourage, but will effectively prevent, many of these people who have families and limited financial resources from training as nurses Hunt has also acknowledged that staff planning has been lacking in the NHS for decades. Yes, it has. So at what point since 2012 when you took over as Secretary of State for Health did you consider actually doing something about it Jeremy?   Bravo Mr Hunt indeed.

And behind all of this of course is Mr Hunt’s big push on safety. Safe staffing involves having enough suitably qualified staff, and the Francis and Berwick reports into the Mid-Staffs failures specifically address this concern and recommends NICE  – an independent body – to undertake the review. Jeremy liked this, because it allowed him to batter nurses over the head with their lack of compassion and vocation, and their silly pretensions at understanding how to manage the complexities of modern medicine, surgery and technical equipment when they’d be far happier floating up and down with lamps and starched hats, porting flannels with which to transfer pathogens onto fevered brows. Except that the actual evidence might result in the need to actually produce real qualified staff rather than imaginary ones and having to pay them to boot, darn it.

Enter NHS England, the body set up to run the NHS after the Secretary of State for Health was absolved of that little responsibility by the Health and Social Care Act (2012), the one that officially made the NHS no more. (You might have missed that too.) They decided, before the Nice report was published to take over responsibility for the research themselves. Now you might wonder about vested interests versus independence, you might wonder about standards of evidence. You might wonder at NHS England’s their lamentable budget and plan to save £22billion more in ‘efficiency’ savings despite the parlous state of NHS trusts’ finances. You might have predicted that the DoH would withold the NICE information under Freedom of Information. But nicely, NICE then decided it was in the public interest to release the information later, and you can see their reasoning here.

There are many examples of government tactics to avoid answering difficult questions; they’ve reached a level where debate is not happening because spin is automatic, it’s reported often without question in the right wing tabloids and broadsheets, misused statistics are stated as fact, significant evidence is buried in favour of cherry picking from often discredited research (the NHS Risk Register has still not been released).

One of the nastier methods involved the Prime Minister’s repeated use of his late son Ivan’s disability as a means of blocking debate on the NHS in parliament because this proved his love for the NHS. The Camerons must have been through hell, and nobody can argue that they didn’t do their very best by Ivan. They didn’t hide him, he was clearly deeply loved. Yet their experiences are always mitigated by wealth, by the ability to set up a converted basement at home to care for their son. Cameron used Ivan as emotional blackmail to get out of answering questions about his intentions for the NHS. The Camerons’ is also not an experience made more harrowing still by the bedroom tax and the government fighting a High Court decision arguing the bedroom tax discriminates against disabled people by challenging some of them in the Supreme Court.

The NHS is an now a collpasing omnishambles, to borrow an ill-fated phrase from an ill-fated leader; one created by government policy over the past fifteen or so years that introduced the internal market (those fundamental conflicts of value systems between the human and the financial again) although Labour at least invested money and our NHS ranked highly among health services in 2012. Since then, the coalition and Tory governments under Cameron have destroyed it. They haven’t asked us what we want, they’ve lied, been caught lying, continued to get away with lying to us and to each other. Many of the staff in the NHS have no idea what the Health and Social Care Act did – which is laid the foundations for privatisation while burying the bodies of pitfalls and costs beneath the foundations of their spin flyover. It’s time for the government to take responsibility and do the job we are paying it to do, while telling us exactly what that is.

Finally, I couldn’t resist adding this piece from Conservative Home in full. I’ll let it speak for itself. At least the author is honest.

The Government’s dispute with the doctors’ union continues to escalate, with junior doctors preparing to hold the first full walkout in the history of the NHS.Writing in the Daily Telegraph, James Kirkup gives the recalcitrant medics a warning from history. He warns that the BMA is repeating the mistakes of the National Union of Mineworkers, over-estimating the nation’s dependency on their members.

That Britain’s economy could survive without British coal was unthinkable, right up until it wasn’t. Kirkup argues that technological progress and competing models of provision mean that our monolithic state healthcare provider may soon find itself similarly outflanked.

But whilst that might be true, it is by no means certain that we have reached this point now. For all that Arthur Scargill’s attempt to topple Margaret Thatcher is the stuff of legend, it shouldn’t eclipse the fact that there were plenty of miners’ strikes before that final confrontation and the miners won most of them, enjoying public sympathy as they did so.

Jeremy Hunt could end up being a modern-day Margaret Thatcher, bringing truculent trades unionists to heel and unleashing modernity on one of the UK’s totemic industries. Or he could be Edward Heath.

As Simon Jenkins points out in today’s Daily Mail, public support for the NHS is currently bulletproof. This makes it incredibly hard to reform: in fact, the public health lobby have convinced many politicians that it is easier to reform the public than to make a serious attempt to reform public services.

“Cost to the NHS” is thus one of the main pillars of modern drives against smoking and obesity. But setting aside any liberal qualms we might have about that, it isn’t clear that this represents a viable long-term solution.

Anybody who the state ‘saves’ from a tobacco or food-related death will still die of something, and the NHS will pay for it. If that person is forced to live a long life then they will likely end up costing the NHS far more than they would had they died younger – the increasing ability for medical science to prolong our senescence is by far the greatest structural challenge the service faces.

Treating expenditure on smoking and obesity-related health problems as money that can be straight-up saved, without accounting for the inevitable transfer of the burden to other parts of the health budget, is therefore extremely disingenuous.

Assuming that we can’t force people do be so healthy that we can afford the NHS, we’re then still confronted with the need to reform it.

It may be that needless deaths caused by industrial action lead to a dramatic sea change in popular attitudes, but as it stands we’re a long way from a place where “wholesale reform via head-on confrontation” seems likely to work, even as a last resort.

Rather, Conservatives should have a long-term, strategic vision for healthcare reform which involves the piecemeal adoption of decentralisation, liberalisation and modernisation in doses the public will tolerate.

Obviously there are a huge number of things this could involve, and Party policymakers should canvass widely for proposals. But when it comes to tackling the outdated and overweening influence of militant unions in the NHS, here are two suggestions.

In his article, Kirkup mentions “the George Washington University study that estimates 85 per cent of a typical doctor’s work can be done perfectly well by a “physician’s assistant” with a fraction of the training or wages.”

If that is the case, perhaps one way to increase staff supplies in the service – without resorting tocontroversial over-dependence on foreign nurses – would be some form of ‘Territorial NHS’, or Health Service Reserve, modelled on its military counterpart.

Volunteers would receive pay, training, and legal rights to take time out of their ‘civilian’ life to work for so many weeks of the year in the NHS. This shouldn’t be impossible: the Armed Forces reserves already offer recruits the opportunity to train in a huge range of technical skills.

A larger, flexible pool of ‘physician’s assistants’ would reduce the NHS’s dependence on full-time professionals. This would not only ease immediate wage and staffing pressures, but make it easier for management to respond to future shifts in demand.

Like any nationalised industry, one of the major problems facing the health service is its need to predict future demand without the aid of psychics. The long training current staff require makes it impossible to rapidly adjust to unexpected demand (without importing labour, that is.)

A ready pool of capable staff, which can be topped up relatively quickly, could thus plug gaps as they arise and make it easier to do that with British personnel.

Given public affection for the NHS, and the esteem in which its staff are held, there’s no reason to think that recruitment would be impossible.

The other way the Government could clip the BMA’s wings would be to diminish their capacity for strike action.

One could approach this task in at least two ways. The blunt-force approach would be to declare doctors, at least, to be one of the essential professions – such as the police and the military – whose members are forbidden to strike. If the junior doctors keep up their current antics this may well become politically possible.

But another way would be to step up the decentralisation of the NHS and make hospital trusts legally-distinct employers.

At a stroke, this would bring the public sector into line with the private by making politically-motivated, industry-wide strikes impossible.

This is because, with sympathy strikes and secondary picketing illegal, trades unions can only call strikes over a specific grievance with an individual employer. In the private sector this has led to conciliatory, service-based unions.

But because all public sectors workers are ultimately employed by the Government, they have been spared the effects of this legislation.

Making hospital trusts independent would not only mean the end of the national strike, it would also yield other benefits. By employing staff on private sector terms such essential and sensible reforms as locally variable and performance-based pay, as well as rational, private-sector pensions, would be as irresistible as they have been in the private economy.

Faced with an incentive to innovate and reduce costs, some trusts may even start to innovate with things like the “production-line” surgical hospitals pioneered by Devi Shetty – channelling the savings into other areas.

It would also mean that in the event of a dispute at any trust, the Government would not be on one side of the table, under political pressure and with the easy out of simply paying up from taxation or borrowing.

One day, the BMA will have their 1984. But it would be complacent to assume that this is it, or that bloody-mindedness alone will bring it about. Conservative strategists owe it to themselves, and to the country, to lay the groundwork properly.

 

PS Henry here describes himself as ‘centre-right’.

 

Dredging

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Finally I felt ready yesterday to talk with a friend who’s been living with metastatic breast cancer for some time. I was putting it off because I couldn’t quite get to grips with the idea that my apparently non-invasive breast cancer (I had Ductal Carcinoma In Situ, or DCIS, diagnosed in Dec 2010) is the most likely  reason I’m in this situation now.

I researched DCIS in depth at the time, obtained copies of my histology reports and made some key discoveries, which I discussed with my surgeon. I was treated conservatively in the first instance, which is wholly justified in the majority of cases of DCIS; indeed there’s a strong argument that surgery is unnecessary for a significant number of lower grade DCIS (low grade means not very active so you can leave it and wait and see; high grade is aggressive and needs to be treated). Mine was found to be high grade and larger than the expected 10mm, at between 50 and 60mm. For that reason, I was recommended to have a mastectomy by the multi disciplinary team (MDT) while my surgeon was away; he disagreed with their recommendation because there were clear margins around the lesion.

For various reasons involving the type and grade of DCIS, I went with the MDT and also persuaded my surgeon to perform bilateral mastectomies. It was complicated, and involved an open discussion. I had felt always that I’d been lucky because my cancer had been caught by accident (I’d had a benign cyst which sent me to the clinic where the DCIS was picked up on mammogram) and the mastectomies meant no further treatment. In particular, I avoided radiotherapy which would have been necessary had I stuck with the original wide local excision surgery (known colloquially as a lumpectomy). Radiotherapy isn’t pleasant and has significant side effects.

I was signed off from the breast cancer clinic after a year, having had a brief check-up and review, thinking phew, that’s that over with. And over all that time my mother was going through treatment for a new aggressive breast cancer in her left breast, having been treated successfully 18 years earlier for three different types of tumour in her right.

So the talk with my friend involved some acknowledgements of the thought that I haven’t been so lucky after all, along with the missing primary tumour option; of course my primary tumour has long gone with the original lumpectomy and then mastectomies. So the thought of what Mr Fewings called a seedling landing in my brain via the bloodstream, and perhaps some in my lung via blood or lymph, is quite surreal. The MDT meeting for my case was yesterday, so they know the answers, it’s just that I don’t yet. And of course it’s Easter.

Living with cancer is something my friend understands. Waiting for scan results is her worst time, and of course that’s a regular occurrence. But mostly she lives her life, tries to stay healthy and fit, plans a little ahead but not more than a year. We discuss the positivity thing, it’s uses and the downside. Be kind to yourself is her thought. Don’t blame and pressure yourself for not being well. Penny Brohn is one of her recommendations, and my friend found it incredibly useful for her state of mind, for coping with the fear and anxiety. So I will be looking at that once I know what’s happening next (always once I know what’s next). There’s also a minefield of treatments, all tied up with Big Pharma and its massive power to charge for expensive drugs for which the evidence is not always clear. I can highly recommend reading Dr Ben Goldacre on that topic. My friend has done her own research, and in some cases has asked a doctor friend to do it for her where she knew she’d find information she didn’t wish to know. She’s asked for one treatment in particular that wasn’t recommended in the mainstream, but which has been excellent for her. So taking charge is key.

It was a kind of dredging to let the flood waters speed through discussion for me. Half formed and suppressed thoughts soaking the ground and forming a quagmire. Such a wise woman, my friend. So good at articulating and thinking beyond the obvious. It’s not been an easy journey for her, and to gain the benefits of her experiences is beyond price for me. We are part of a small group of women who met through having breast cancer on the Breast Cancer Care forums. We all had mastectomies in March 2011, and supported each other virtually via a secret Facebook group. We’ve been through a series of cancer and non-cancer related life events since, and have met in person in London, and for a spa weekend in Wiltshire. More genuine friendships and support via social media. It can be such a marvel.

I suppose in summary, I’m in an odd place this week. But I feel a breakthrough.

Head and Boggy

My boggy head bubbles pop and blip and bloop less often, then disappear rather suddenly. Removing the clips had released some scalp pressure, and washing my hair 24 hours later was bliss; the touch of water easing it all, the cleanness of it, is a catharsis. All those icky sticky bits, blood, bugs, staleness, washed away. It’s sore rather than painful, certainly the least painful surgery I’ve had.

Then the head feel changes again. The vestiges of the Hunt headache have dissolved to a wisp of ectoplasm, and now there’s the tightness over the site of the craniotomy. When I pressed the dressing accidentally on day 3, I felt a definite squidge and it was hard to resist squidging it some more to see what happened. I felt it when travelling by car, centrifugal force pushing fluids outwards. Now the squidge has gone and in in its place is a firm, circular pressure. I guess this is the bone, screwed back into place, starting to re-grow to fill in the gap. I’m still sleeping propped up, because the sensation of pressure increases as I lean towards the horizontal.

I’ve finished the Kepra now, and am on day 3 of the low dose of dexamethasone; just 2mg twice a day. This morning I’ve felt able to resist my first breakfast (the 3am one) which is a breakthrough; while hungry, I’ve lost that horrible gut gnawing. The steroids have all but wiped out the osteoarthritis in my hands and knees, although I can feel the lack of muscle around the knees. My back, trashed by a decade on ambulances and the site of recurrent injuries – most recently a bulging disc – is an absolute dream. I was also due to have shoulder decompression surgery and the pain from certain movements and from lying on my left side (the side I have to lie on at the moment) was a constant; no longer. If it weren’t for the cancer I could probably do cartwheels. If I lost weight, that is…

 

Death and all his enemies

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Yesterday I went to have my scalp clips removed in the MIU, and saw my old Dartmoor Rescue mentor J who’s a nurse there. While the MIU student removed the clips very professionally and with little in the way of discomfort, I explained the two main options of what my cancer might be (a GBM4 or a metastasis from an unknown primary), and about the physical weakness I have now, the ways I’d tried to carry on being that physically strong person I’d been for most of my life. Now I’m not. I haven’t been for months and months. I told her how I’d tried to find ways of getting over it, the I must lose all this weight I’ve gained, I must push it up hills instead of giving in and ambling, I must get fitter and get to grips with my increasingly fragile mental state.

The acknowledgement that I’ve been feeling this way because I have cancer is a momentous one that affects me in so many ways.  It means this is not anything I can overcome through physical effort or force of will. As J pointed out it’s purely about keeping my body as well as I can for the treatment, I can’t get fit. And my mind is aligned by blogging.

Yesterday I walked around the small beech banked area of Plaisterdown with Sausage the dog formerly known as Bun. I guess it’s half a mile, and it took me a good 20 minutes. I tried to engage my core and drop my shoulders, but I wasn’t up to arm swinging. As I moved I felt loss rather than gain in energy; the feel of mizzle seeping through my limbs to the ground, or the final dusting of glitter dropping from a Christmas card on twelfth night.

I’m weak from the op I know, but there’s not a huge difference from beforehand. I have medication in Kepra (last dose this morning) that makes me dull and tired, and the steroids that have blown my face up to the size of Jupiter and my feet and ankles to cushions, and blurred my vision. But I’m fundamentally weak.

I don’t need to be told by anyone that I’m strong and positive, I don’t need to be buoyed by well-meant words. I need to be realistic, until I find out for sure what treatment options I have and whether the potential benefits will outweigh the side effects. Yet I still like positive thoughts. One more cognitive dissonance. I spoke last eve to Kernow Stef who’s been sans broadband thanks to a house move. She likes to send me waves of positives because we usually swim in the sea. Last year we met at Whitsand and were playing in some quite poky surf, where she suggested taking the wave on backwards; as I leapt up it hit me in the back of the head and shoulders, and positively smacked me face-first into the foaming water and then the sand. That’s the danger with positive waves.

Death is something we fight against because our culture doesn’t understand it. Camille Paglia (a controversial but always interesting woman) makes an excellent argument that, through banishing birth and death to masculine, clinical atmospheres like hospitals (they work, she says, in Apollonian ejaculatory straight lines) we have disengaged with the feminine core of life and of nature, the blood and guts and circularity of sex and birth and death, and the rounded, unbounded bodies of women. So we reject death, fear it, try to control and master it – and our bodies. In my experience you sometimes have to allow death to happen, and I have been present at deaths from a variety of causes where the person has fought, struggled, and not gone gentle into that good night. Others have just slipped away, and some were killed with no chance to do anything and probably no more than a split-second realisation that this is the end.

I’ve resuscitated people in their 80s and 90s whose lives are not what I’d call a life. How many conversations I’ve had over my years as a paramedic with frail, pained elderly people who want nothing more than to slip away. I wish they’d let me go… Usually they suffer deep loneliness, fear, pain, falls. It’s most often a fall that results in an ambulance visit, if only to get them up and check them over. Usually there’s all sorts going on. They tell you their woes. It’s one of the more sustained emotionally difficult parts of a paramedic’s job, dealing with such misery and hopelessness because there really is no solution but blessed death.

Then, later on when they do finally die despite the long lists of medications that regulate their heart failure, and their blood pressure, and their diabetes, and their pain, and their dementia, we are sent to perform advanced life support, to attempt to save them. From what? More of the prolonged death to which modern medicine has subjected them, usually without any meaningful discussion of choice (how about if I give you this drug you might stay alive for another couple of years, or you could not take it and this is probably what’ll happen?) That drive to improve longevity and give people a healthy, fulfilling retirement has turned many lives into a kind of purgatory of waiting for it to be over.

Resuscitation starts with taking what are called heroic measures to save a life. A paramedic’s job is essentially in this context to keep the patient oxygenated and perfused, and it’s the kind of drama that everyone thinks paramedics engage in all the time. When I worked in Newton Abbot I was doing maybe 20 a year, less in other areas. So it starts with the airway and breathing, then involves such interventions as intravenous or intra-osseous fluids to maintain blood pressure, followed by CPR as the lungs and heart give out. Of course you can arrive at any point in that decline, or you can precipitate an arrest by moving a dying person from their bed to take them to the hospital. If the person is fit and was relatively healthy, then a successful resuscitation is a marvel. If they were dying of old age or an incurable disease, it’s an utter travesty, and a pointless one. We do it because we can.

Advanced life support is now so well drilled that we get people back quite often. The insult to the brain and body is huge, and the survival rate of an out of hospital cardiac arrest is much smaller than you’d imagine, especially one where the patient is neurologically intact. Often, they weren’t neurologically intact when they died, and were languishing in a nursing home with dementia. Why on earth are we even considering resuscitation? There are many moves afoot to try to prevent this kind of thing, to allow a natural death, but the overstretched GP service which plays a key role here is fighting a losing battle with cuts and 10 minute appointments, especially in areas like the southwest where the retired population is disproportionately large and where resources have not been increased in proportion to house building and retirement complexes.  It’s certainly not an issue to cover in one of Jeremy Hunt’s 60 second on-line appointments. How do you deal with that in even 10 minutes? Add in the Daily Mail and co, and you have a minefield of misinformation, a blurring of lines between euthanasia, the killing of elderly people without their consent, and CPR as some kind of miracle treatment to sustain life. It’s an understandably emotional bog of fear and horror at the thought of a natural and timely death that makes no reference to evidence or genuine humanity. The Liverpool Care Pathway fell foul of that. There were most certainly communications issues and mistakes in some cases; yet we all love a hospice which specialises in exactly that kind of care for terminally ill people, but we can’t allow our elderly dying to be supported and leave the world calmly because somehow we think we’re murdering them unless we treat each stage in their decline as a medical emergency. They’re suffering alright, but not in the way you think.

The oldest person I’ve been forced to perform advanced life support on was 96, and I know of one that ran the full time aged 101. Give him a chance, he’s a fighter… is the kind of thing people who ask you to do everything you can will say. A chance? At what?

The majority of the cardiac arrests I performed Advanced Life Support (ALS) on were in their 70s and 80s, with a fair few in their 90s, and some much younger but with advanced COPD and cardiovascular disease, or complications from diabetes such as limb amputations that tell you their circulatory system isn’t functioning. You do get those sudden arrests in younger people, from MIs, or drug overdoses, sometimes strokes, sometimes with no obvious cause. Those are the ones that it’s for, the ones any doctor will work flat out to get back (doctors have the power to call time on cardiac arrests that we don’t), although the outcome might not be good. They’re young, they still have lives to live. That’s what we do the job for and there’s no greater reward than receiving a card or a visit from someone you brought back, especially when you thought they were toast. These have a reversible cause. Old age and terminal illness are not reversible.

Quite often, you’d get a fit octogenarian back, and they’ll be apparently okay, but I still wouldn’t like to be them; a sudden death in your 80s sounds like a dream to me from where I’m sitting. Resuscitation and a prolonged death through frailty and a mass of comorbidities does not. We’re supposed to die. If we don’t then we need to stop reproducing, and perhaps all retire to Teignmouth with squads of elderly paramedics (retirement age soon to be 70) resuscitating each other. I’m simplifying a complex argument to explain my current thought processes about my own situation (you can’t ever draw a line of course) and as always, communication and debate is what’s needed, with individuals and their families and friends. One to expand on later, and to consider in depth, without hysteria.

A resuscitation is not pretty. It’s not like the ones you see on telly. Usually there are body fluids from every orifice, stinking and spewing. Vomiting can be intractable, and continue to well as you compress the chest and clear the airway, suctioning frantically, trying to drain positionally, dashing to intubate if you can see at all. Shit and piss seep, so you kneel in it unless you squat, and then your muscles start to scream. There’s a pervasive scent of death. Strange gasps and squeaks; sometimes a spooky sigh; the thumps of good, deep chest compressions; cracks as rib cartilage, and sometimes ribs themselves, snap under the pressure. The sensation through your hands is disturbing, but you push through, compressing at 100 a minute, about 5cm down each time; you begin to sweat and pant after a couple of minutes, need to swap over to keep the effective compressions going.

You bag your patient, grip the padded mask to the face that was recently animated. Sometimes you need help to pull the slack skin of the cheeks over the mask to get a seal to oxygenate them before inserting an endotracheal or laryngeal mask airway. Your patient’s face won’t look alive, and it’s oddly coloured; maybe blue-grey, or tinged with purple around the lips and nose, or the colour and texture of a church candle. It depends on how long the down time is, or whether or not you’ve got a decent airway and chest compressions going. You might have no idea what this person was like, or you might know them well as one of your regulars, or someone from the area where you work that was a family friend. They’re dead cold.

You shock to re-establish an organised heart rhythm, not to restart the heart. In fact, the shock stuns the myocardial cells, all of which are firing away individually but out of synch or too fast to allow the heart to pump blood. You don’t, as they do on TV, shock asystole, which means a flat line – there is no electrical activity at all. That gets adrenaline only, via an intravenous cannula (IV), or maybe from an intraosseous cannula drilled into the humeral head or the tibial plateau.

Anyone who dies at that age is dead. Bring them back, resurrect, you prolong their death from frailty and old age. But somehow we’ve come to the point where too many people consider it a patient choice rather than a completely inappropriate and unjustifiable set of actions, which are not based on evidence in such cases. And we are supposed to practise based on evidence, not vague whims commensurate with the choice of 300 types of breakfast cereal in Tescos.

To give a human being who’s had a long life the dignity of a peaceful death is not giving up on them. I felt physically sick as I crushed the chest of a frail, failing 96 year old and her breast tissue sank beneath the ribs, which fractured and detached from her sternum as we continued chest compressions. Her chest was like a bird’s, protruding sternum and each rib curving back. She was in a nursing home. We managed to call a halt on that one after fifteen minutes or so, via the local GP. But paramedics have been called in front of the HCPC for making such decisions. Had we ‘got her back’ we’d have condemned her to yet more un-death, that vampiric existence of frailty and feeling, probably, the way I feel now but in spades.

I’ve had families overrule a DNAR for someone who’s got so many problems they’re in a living hell, and we’ve had to do our best to resuscitate them too. I’ve been asked to take many dying patients into a main hospital from a community hospital because nobody’s managed to have the DNAR conversation. So I have to resuscitate up to the point of cardiac arrest, at which point I can stop because the doctor has decided that CPR is not appropriate, while a trip to the ED is.  If that involves inserting an intra-osseous cannula into the humeral head of a dying nonagenarian who still feels pain, you can’t tell me that’s okay; it’s torture. To flush an IO causes severe pain, screaming pain. In that case I called the ED consultant and he overruled the other doctor whose instructions I had been ordered to follow, before calling the doctor and making his feelings clear. But I could have just done it. And some people would argue I should have.

Then there’s the flip side, the way we run our social care mostly for profit. It’s the carers, usually paid below the minimum thanks to no paid travelling, and tight, fifteen minute slots, who bear the brunt. Once I found an 18 year old who’d overrun on her slot by an hour already, and who’d been told by her manager to leave her elderly charge who’d wet himself when he fell, because he’d had his time when she picked him up and she wouldn’t get paid. She’d stayed anyway, changed him and washed him, then realised he wasn’t right and called me. Bless her heart and a pox on her manager. Patient care is at the heart of everything we do, allegedly. That one was passed via the GP to social services. We treat our elderly like packages or pets.

We were once called by the police who’d broken in on a concern for welfare to an elderly woman who’d grown into her chair; ammonia-soaked flesh literally made our eyes water as we entered. She was waiting to die. She’d dispensed with her social care such as it was, which is her right. Someone was coming and feeding her, doing the odd bit of washing. But mostly she sat in her own excrement and ate cake, waiting to die. We managed to persuade her that we should wash her and change her clothes, swap the chair cushion. We built it up with inco pads, called the local community nurse who appeared at once and tended to her. We got four visits a day from carers, in carefully-timed fifteen minute slots of course, there’s a profit to be made here. Sometimes she’d let them in, sometimes she’d throw things at them and try to hit them. She wouldn’t let a doctor in the house. She lived around another two years, and the last time I saw her she was clearly dying but wouldn’t let me in. I wanted to make her comfortable, but she hadn’t been comfortable for years, only death would end her suffering.

When you hold the hand of the dementia patient being sent from his community hospital bed where he’s dying to ‘investigate’ gastric bleeding at 4am, and tell him where he is for the 25th time, then when he asks tell him that no you’re not staying with him, you’re leaving him here with a nice nurse, whom you know doesn’t have time to sit with him, and watch the panic in his eyes, it’s pretty upsetting.

You can’t ever say that’s in the best interests of the human being whose death ought to be a matter of comfort, management of pain and distress, and familiar faces in a familiar place. We need to fund social care, we need to address loneliness, and the management and care of dementia. We absolutely should be allowing a natural death in the vast majority of these cases, not performing resuscitation and ALS.

I hope I can make the decision to let death come when it’s time; that’s likely to be sooner than later for me.  I don’t want to fight it in a hopeless attempt to stay here for someone else’s concept of life at all costs, when life for me is such a matter of experiencing the moment, taking risks, loving the adventure. You can keep a shell of a person painfully and horribly alive with a cocktail of medications for years, or you can decide to stop treating, to allow some dignity. That’s where the choice should lie; risking that wild swim into huge swell, the one where you drop off the back of a wave and are sandwiched between it and the rebound, or perching on a canvas chair in a car park on the moors, with the car door open in case something wild or dangerous happens so you can safely escape back to so-called civilisation.

Notes on social media

It’s now day six post-op, and I’ve been blogging retrospectively to catch up, since I could only experience it and recollect, scrawl notes most of which I couldn’t read, and try to remember the key points of how I felt, the surreality. Once I start, it pours.

This is my primary means of communicating with most people, and consequently I’ve grown a rather weird disconnect with the world, because my head is in a completely different place over the past three days from my blog posts.  I’m being supported from so many quarters, but I had asked not to be messaged directly for a while, though some people have done it anyway, and I appreciate that. It was the volume that I couldn’t deal with. I love the Facebook and text messages, but there is a pressure to respond, regardless of peoples’ assurances they don’t want a reply that doesn’t exist in the same way as if you receive a card through snail mail; it’s one of those social media things that can become quite a negative if you don’t control it. When you send messages rather than talking in person or on the phone, it’s a two-way communication and you don’t know the state of that person’s head. You know they’ve seen the message, and they know you chose not to answer or to call back later. I’ve come a cropper on Facebook posts several times, where I’ve meant something to be humorous and it’s been taken the wrong way. It happens in real life too of course, can be misconstrued so much more easily in the absence of physical or verbal cues. I still like getting messages, and I have replied to some, but forgive if I ignore or just do an xx.

There’s also a pressure in that I feel bad if I don’t ‘like’ every social media comment on a blog post, and soon with those mawkish Facebook and Twitter like-escalations into ‘loves’ that fire off smaller hearts, nothing less than physically appearing in the poster’s house and snogging them will do. Yet it’s social media that built many of my friendships and connections, often with people I’d never have met otherwise, through two Facebook groups in particular; the Outdoor Swimming Society in the UK and Did You Swim Today from the US. It’s mushroomed into a vast, informal international network of swimmers whom I now ‘know’. Many have appeared in Devon asking to go on swims, and through shared adventures have become true friends of the type who are there for you when you realise you have a brain tumour. We’ve travelled and met with other swimmers who share so much of our own world view that we can’t help but become friends. That shared interest in living life, in exploration and adventure soon branched off into art and writing, and craft projects. How would I know these lovely people without Facebook?

I haven’t seen anyone bar family since the op, with the exception of one of my swimming friends, Fi, who dropped in on Sunday as she lives in London and had made the trip to swim and to see me and I while she had a work gap. She negotiated down to 10 minutes, but of course stayed an hour. It was so lovely to see her, and she brought spring hedgerow flowers that smelled divine and some of her famous kombucha. We talked about lots, and in particular, death, which is something I need to do. I’m tired, sleeping when I can (mostly in the day) but still in need of human contact. So the balance between social media, iPhone, and actual people is quite hard to manage. The less I see people the more I need to check Facebook which quickly becomes a compulsion. Mum finds visitors stressful because she’s of the generation where her house must always look perfect, and I find her hoovering and polishing at all hours (which she does anyway, but she thinks she needs to do more each time someone appearas). I genuinely don’t care if my house is a bit of a mess. All extra things to negotiate.

Today I washed my hair…

Hair and head bogs

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Sometimes, Mum would wrap my freshly-washed hair around bits of toilet paper and tie them up at bedtime. She’d complete the effort with kiss curls; coiled strands just in front of either ear, pinned in place by two crossed Kirby grips. The photo is from my cousin Sarah, on the left here, showing the two of us in 1964 aged three, on the beach at Bude. See my ringlets! Mum used to say: we all must suffer in the cause of beauty. I can remember her in the same era backcombing her hair, layering it in spray, adding hair pieces and grips and big doughnuts like roadkill moles, the constructions needed to achieve the Dusty look. Sometimes I got the Audrey Hepburn topknot (hair covering the mole that was as big as my head, and wrapped beneath, skewered with curved pins into my scalp), or the dreaded ringlets, which meant a night with knots hurting my head, unable to get comfortable, and the tussle between those and the pulling of individual strands of hair was some kind of torture. And tonight, my first night home, l’m back there in that powerless state with my new dressing catching now dry hairs all over and irking the Hunt scar in a way it hasn’t been irked before. So I grab the dressmaking shears and cut through one side of my hair, releasing it as Mum shrieks. Finally, a rebellion. Relief, but the dressing’s fallen off from the top. Mum manages to re stick it using one of the new dressings, but when I press the feeling is horrible, a kind of squidge and bubble. I decide to ignore it, and get the dressing redone properly at the Minor Injuries Unit in the morning.

I sleep till 4.30 which is some kind of miracle, then wake and write. As an active resister of routine, at the moment it’s quite comforting to know that I have one. Meal times aren’t usually a feature of my life – I eat when I feel like it. But here at my parents’ home meals are eaten at the dining room table, and they’re planned. I have extras thanks to the steroids which give me a gut-gnawing hunger, and so I start with my first breakfast of oatcakes and cheese – at the moment I have a passion for cambozola – somewhere between 3 and 4am, with a mug of ginger tea. When Mum gets up to make tea somewhere between 6.30 and 7.30 I have my second breakfast of toast with marmite or peanut butter and a mug of builder’s tea with steroids on the side. Then at 9 ish I eat oats with chopped nuts, dates, live yogurt and banana, with a cafetiere of coffee and a glass of apple juice. A whole day’s food by 10. Then there’s the pre-lunch snack with steroids on the side again, the lunch, the pre-dinner snack, dinner and late night snack, and the other meds I take, two of which are tailing off at different rates. It’s hard to keep track. I’m going to be an elephant, anyway, but one with a routine.

Mum and I are sat in the tiny MIU waiting area in Tavistock. We hear the shuffle, a clop clop clop. He appears in the doorway, sheepskin coat, tween cap, walking stick and pointy-toed gait. We smile and say hello.

They don’t tell you about old age, maids, tis a bugger! I used to be able to leap a five bar gate, now I couldn’t jump a straw! He gesticulates low down. These legs is dreadful…

I reckon he could leap higher than I could today, the life force is strong in him.

What happened to your cap then? There’s a triangular singe mark across the peak.

Got im damp and dried him by the fire, and he caught a bit. People’s always mentioning it, telling me I should get a new cap; well I got two spares but this bugger’s got plenty of wear left in im, he’ll outlive me! 88 I am!

He’s a regular, in need of social contact and dressings.The thing I miss most about my job is the contacts like this one; chatting and laughing with people who’ve lived incredible lives often, lives that have seen so many changes and upheavals. He shuffles off with the nurse to get his legs dressed, waving and smiling, muttering Tis a bugger.

A few minutes later and the MIU HCA is looking at my scar which is excellent, and in a flash she’s replaced the dressing with one that I barely notice. I have been worrying, because of the head bog. I’m not minor injuries trained, although a number of paramedics now are. It’s a specialised area, assessing wounds and how best to treat them. My approach is the classic ambulance one – clean, cover with something sterile and big to prevent infection that ensures nobody thinks you’re a Johnner (St John Ambulance are known for their most beautiful bandaging) and send them off for a professional assessment. When it comes to more significant injuries, and in particular head trauma, there’s one sign that we all look for; bogginess. It took me some time to work out what that meant when I started in the ambulance service, but once you’ve encountered it you know. We all talk about head injuries, but bogginess hints at the real concern which is compromise to the skull and thus an underlying brain injury. A boggy head wound goes to the ED, no questions. Now I’m feeling boggy myself and it’s most strange.

One of our favourite wild swims is down the river Aune or Avon from Aveton Gifford to Bantham. We go on the high spring from towards the top of the tidal reach, and swim down the ria three and a bit miles with the ebb. The top stretch is silted mud, and the water is opaqe, greeny orange and brackish. Here when you swim you feel the silt, press with your hands and mould it, release bubbles from dwellers in river mud. I know there’s a world under that brown gloop, a deeper, chthonian world I’m brushing with my hands as I pass. Lower down as the salt water sinks beneath the less dense and cooler river, there’s an area where methane from rotting vegetation is trapped beneath sand layered lightly by currents. As you tread you feel your feet are on clouds and streams of bubbles rise as you move, tickling your legs as you sink back into the water. My head contains a mix of those sensations, and perhaps some Dartmoor mire; one of the places I used to take my nephews bog-trotting, where you run and the ground wibbles and undulates as you pass.

It started with a need to blow my nose. I did so gently, and was surprised by bubbles blipping up from the left nostril beyond my eye. Air in the sinuses. Then when I touched the top of my dressing, the bog in my head began to bubble and squish. Reading the information on craniotomy, the piece of skull is replaced with srews, but is prone to lifting and moving till the bone heals and I guess that’s what I’m feeling, along with the swelling from the op (although I’m happy there’s not much of that as I have no major symptoms). The brain and spinal cord are encased by meninges or membranes, which have beautiful names: the dura mater is the tough mother, the outer protection; the arachnoid mater (spidered with blood vessels) sits beneath; and then the pia mater is the soft mother, the membrane covering the brain itself. Between the latter two is the subarachnoid space, filled with cerebrospinal fluid (CSF) that acts as a protective buffer. Those membranes have been cut, and I hope restored. Something I’ll ask about later, how do they repair such fine entities? To notice fluid moving from within is most strange. The potential presence of CSF in the form of watery bleeding from the nose or ears particularly is one of the signs we paramedics look for in our trauma survey and I’ve seen it on a number of occasions. So it’s especially odd to be feeling it, although in such a controlled way. Still, as Mr Fewings says, yes it’s brain surgery but if it goes well it’s fine. I think it’s fine. It just feels odd.