Tuesday, 19 June 2018

Parent bashing

I see the Guardian is enjoying its pre-summer holiday fun with its now familiar 'Leave those kids alone' headline. Huh. Parents. One moment it's neglect; the next we're helicoptering.

I just want to remember a bit of background culture.

Not so many years ago (Sir) Michael Wilshaw urged more structured learning in school-based nurseries.

As I remember, he advised 'well-directed play', which I guess is code to parents for Teach your child how to play before they get to nursery at age 2! Then your little Tinkertop will be ahead at school and succeed in LIFE! Maybe his agenda was to reinforce the culture of school league tables and early testing.

I guess some nurseries took up the offer, telling Tinkertop how to play with the toy trucks in a manner which would comply with all road signals. Then upcoming parents could be properly instructed in the pre-nursery input expected of them. Direct your child's play to focus their learning potential and maximise performance in age 5 tests - realise your child's true potential!

But it's not the first time that the government, with its departments and think tanks, have set about telling parents what to do and how to do it, threatening us with the guilt of dire consequences if our child fails to comply.

As in, your child will fall behind if they miss one day of school. Your child will fail to get a good job if they don't follow the school rules. And (one of the best yet), Your child will fail if they don't have a good grasp of grammar.

As a semi-neglectful parent of daughters, who have between them missed some 10,000 days at school (and I have yet to find one drawback about this), I can truly say I want parents to rebel. I really do. I want parents to loudly call out nonsensical parent-bashing crap every time they encounter it. I want them to kick up so much fuss we can't see the pavements for the packs of feral kids sent out to see if they can construct a functioning alternative society before tea-time.

Let's face reality. Schooling is big business from pre-school to further education. The government has turned the whole lot into a retail job, running on the same lines as the outfits in your shopping centre department stores. Courses have 'sticker prices' and now it seems normal to talk about money, not widening a person's thinking, as the end goal to a life lived in schooling. Research, findings, policy-forming think-tanking: I suspect much of it. They are basically seeking to reinforce the schooling system that we have, rather than to radically approach and present challenging thinking.

So how about a different puzzle for us all to spin on. How many graduates do you need to staff a coffee shop?

Saturday, 9 June 2018

Welcome to the ecare system

In the last month, my husband lived in hospital for over a week. He was admitted through the emergency route on his 7th chemotherapy cycle.

A week. The longest time he has yet needed to stay. Not surprisingly, he is depressed, tired, upset, and angry. Told he can go home, this is suddenly denied him and he must stay for another day. Then another 8 hours. Someone didn't scan down the onscreen information, you see? They only looked at the first line, and the second line gave different information which would have meant a different instruction and a different result.

My husband is close to crying. He wants to cry with frustration. He wants to come home. I feel him lost in the hospital and, as I make another trek across the hospital grounds, I am afraid of the future.

Anyway, background information about my husband, whom I have known for 30 years, it doesn't matter. Neither does his name matter, and neither does any interaction anyone might have with him.

None of this matters because now he is a barcode that needs scanning.

When his barcode is scanned, the computer screen instructs the assistant. The assistant looks at the screen. They do what they are told. Then they leave the room where my husband stays alone.

When the nurses, students and assistants come to scan the barcode, these are the four interactions I have heard offered to my husband, who stays in bed day, after day, after day, while I am scared of the future.

I have numbered these interactions 1, 2, 3 and 4, for your reading convenience.

1. I'm just coming to scan your barcode.
2. Can I have your barcode?
3. Hmm. Barcode.
4. No words. (Nurse enters room, scans barcode, and leaves.)

These thoughts strike me.

Your nurse doesn't need to be human. Perhaps this would help, because then we wouldn't be disappointed. A robot doesn't care.

The doctor doesn't need to be in hospital. They could be sat anywhere in the world - the USA, India, Australia - a call-centre operative, outsourced in a globalised medical supply system. Professionals working quickly and remotely; scanning the onscreen information and sending instructions digitally. This would be easier. We wouldn't expect a human to smile.

In the old days, there used to be folders that followed you around. A person could scan, quickly, the pages of information to make a judgement. Yes, that liver function has always been high: a strange abnormality brought on by reactions to treatment. We can see how temperature follows the same pattern, so yes, let's use judgement now, in a stream of oversight, discrimination, speculation.

But that is old style. Folders are lost. Hand writing is impossible to read. Mistakes are made. Reading from a screen, one line of information, without the oversight to impede the medical decision. We could fit in twenty patients an hour on such a rapid throughput.

I'm an old dinosaur. I don't belong in this world. There is a bright new future, and I'm not part of it. The healthcare services are now looking to 5G: robotic surgery, wearable devices, online doctors, remote procedures. Technological transformation of medical services brings in consumers and markets, buyers and sellers. New markets. New economies. The healthcare budgets of old nations are vast.

This is the language of healthcare. It is of the economy. It is 'new value chains' and 'beneficial partnerships'. They will 'improve resource efficiency' and 'meet consumer demands for greater convenience and freedom of choice' with 'value for money'. This 'technological transformation' will offer 'opportunities for telecom operators to penetrate new value chains'.

But the loneliness, confusion, and dismay that might result from an all-computer system, we could deal with, couldn't we? We could access the hospital range of touch-screen devices to amuse us as we sit alone in our isolation wards and side rooms. Viewing packages available on request. Prices range from day rate to long-term. This is e-care. Enjoy your stay.

Tuesday, 29 May 2018

In the playhouse

New Shed for Squirrel. Former playhouse. Roof changed from wood to polycarbonate after a holly tree fell on it. Big can of paint from Re-Use centre and result. (Much loafing about with books, I hope.)

Friday, 18 May 2018

What does 'education' mean?

What does it mean, this word education?

For the lazy, it just means 'school'.

The school this month says it means exams. They say, It's all about exams.

For some people in government it means oversight.

My neighbour says it means SATs.

I hear, for the little'uns, it means tests.

In one of our national newspapers this week 'education' means approve, monitor and inspect.

These definitions don't sound right to my ears. They all sound a bit uninspiring. Is it so? Education has become not curiosity, wondering, experimenting, learning; the time to explore.

Education means learning the mark scheme. This week, at school: What do we think of 3.2 in the mark scheme? Oh my broken heart, for what education means. I still want education to mean, What do we think of King Lear?

Well, you work it out. What do you mean by this word, education? (Careful. You might pick a fight with the school, your neighbour, or a national newspaper.)

Otherwise, outside, from over here, education is philosophy. Education never meant tests, exams, learning the mark scheme 3.2.

It means, the freedom to explore whatever you like.

Thank goodness then, we still have otherwise than at school. But we're holding on to that, only by the skin of our teeth.

Wednesday, 2 May 2018

Think very carefully before you're bullied into home education by a school

Beware. Times they are a-changing.

The laws and guidances pertaining to home education might be changed by the time you read this.

At present, there are no laws, no statutory duty and no powers for government to oversee, monitor, register, control, inspect, or interfere in any way whatsoever with your choice of elective home education. Neither are you required to register or seek approval from any local authority to educate your child at home.

In home education, we have enjoyed a sort of trust tradition. The state has trusted the parent, believing that the parent knows what is best for their child. Here is an implicit understanding: a parent will move heaven and earth to support, encourage and develop their own child’s interests, abilities and aptitudes.

But times, they change. We have entered a world of suspicion, surveillance, monitoring, tracking and targeting. Civil liberties is a contested area.

But the government has powerful clients like Capita and Pearson whispering of solutions to these issues. They run very nice databases and big educational-technology projects. Wouldn't it be 'right' if all citizens could, 'for connected purposes', 'be embraced' by the new opportunities that a technology-driven world can offer?

In this new world, governments and corporates could work hand-in-hand to 'help' us all, and bring about 'social cohesion'. Surely there's nothing wrong with a bit of data sharing of your child's emotional, educational and welfare needs?

Home educators, with an insistence on parental rights and freedom to eschew educational database compilations and choose what ever field they damn well like for their child are, in this happy new world, more than just an awkward squad. We must appear as awkward as dinosaurs with attitude.

For many years, as the pressure is applied to all citizens to conform, the government has ‘had a go’ (to put it mildly), at the image of us off-beat home educators, treading our own paths. Once, we were seen as eccentric hippies. The worst that was probably said of us was, 'Let them get on with it. They are harmless and bonkers.'

Over the last 20 years, as we have been seen as more 'dangerous' to the vision of conformity, then the campaigns to bring us to heel have become more vicious.

Now home educators are routinely cast as child abusers. Terrorists. People with dark secrets to hide. People who need to be watched. People who are up to no good. Feckless. Inadequate. Mentally unstable. Mothers who have Munchhausen's Syndrome by Proxy.*

My personal favourite is that my children are invisible. (I must have imagined them all along.)

But now, we have a very specific problem in the world of home education. Schools. Schools are joyless, soul-sucking places which no longer let kids run about and be kids. Kids are now proto-customers for whom their parents are indoctrinated into believing they must buy verbs and number lines. Otherwise their child will never get a job. (The jobs don't exist, but shhh about that.)

Some parents (quite rightly IMO) tell the schools to fuck off. Parents and child choose instead to run about in the woods and learn about beetles.

Some kids, trapped in this miserable SATs factory, simply go bonkers. (Not surprising.) The schools then tell the parent to fuck off. Or, 'Why don't you 'home-school'?! The parent then has a miserable time; isn't dedicated to home ed, has no philosophy about education, and thinks the answer must be in a text book, somewhere. They sink or swim.

Think very carefully, then, before you home educate. Instead of attending to the basic structural and social problems - the trust in you as a parent, the pressure on government from corporates, the demands placed on schools by government ministers - all the attention will focus on You.

You will spend all your time looking over your shoulder, wondering what is coming at you next.


Make provision for local authorities to assess the educational development of children receiving elective home education; and for connected purposes.

Be it enacted by the Queen’s most Excellent Majesty, by and with the advice and consent of the Lords Spiritual and Temporal, and Commons, in this present Parliament assembled, and by the authority of the same, as follows:—

1 Duty of local authorities to assess children receiving elective home education

(1)The Education Act 1996 is amended as follows.

(2)After section 436A (duty to make arrangements to identify children not receiving education), insert—
“436B Duty of local authorities to assess children receiving elective home education

(1)Local authorities have a duty to assess the educational development of children receiving elective home education in their area.

(2)Local authorities have a duty to provide advice and information to a parent of a child receiving elective home education if that parent requests such advice or information in relation to their obligations under this section.

(3)A parent of a child receiving elective home education must register the child as such with their local authority.

(4)Local authorities must assess annually each child receiving elective home education in their area (hereafter referred to as “the assessment”).

(5)The assessment set out in subsection (4) must assess the educational development of each child.

(6)The assessment may include—
(a)a visit to the child’s home;
(b)an interview with the child;
(c)seeing the child’s work; and
(d)an interview with the child’s parent.

(7)A parent of a child receiving elective home education must provide information relevant to the assessment to their local authority when requested.

(8)The Secretary of State must by regulations made by statutory instrument specify—
(a)the arrangements for parents to register a child with their local authority under subsection (3); and
(b)the methodology of the assessment.

(9)A statutory instrument containing regulations under this section is subject to annulment in pursuance of a resolution of either House of Parliament.

(10)In this section “elective home education” refers to education given to a child at home following a decision by their parent to educate them outside the school system.”

2 Guidance relating to elective home education

(1)The Secretary of State must update the guidance for elective home education 
for local authorities and parents to account for section 436B of the Education 
Act 1996 by the end of the period of one year, beginning with the day on which 
this Act comes into force.

(2)In updating the guidance in subsection (1), the Secretary of State must have regard to—
(a)the expectation that elective home education must include provision of supervised instruction in reading, writing and numeracy, which takes into account the child’s age, ability, aptitude and any special educational needs and disabilities, and
(b)the views of children and parents who elect home education.

(3)The Secretary of State may carry out a public consultation to inform the guidance set out in subsection (1).
In this Act— “elective home education” refers to education given to a child at home following a decision by their parent to educate them outside the school system; and “local authority” means—
(a)in relation to England, the council of a district, county or London borough, the Common Council of the City of London and the Council of the Isles of Scilly;
(b)in relation to Wales, the council of a county or county borough.

4Extent, commencement and short title
(1)This Act extends to England and Wales only.
Home Education (Duty of Local Authorities) Bill

(2)This Act comes into force at the end of the period of two months, beginning with the day on which this Act is passed.
(3)This Act may be cited as the Home Education (Duty of Local Authorities) Act 2017.


* 'At our first interview Mr Badman was interested in what I had to say. His opening question was to ask me if home educating mothers suffered from Munchhausen's by Proxy. I thought this to be a curious starting point - that of questioning whether home education is a symptom of mental illness.' Memorandum submitted by Dr Paula Rothermel FRSA, Educational psychologist expert witness.

Sunday, 29 April 2018

The Law doesn't matter. This is Revenge.

The first thought I have on seeing a copy of the Times article - how police are tracking home-school kids - is, Revenge.

The fact that Lords and Ladies are supporting this - a police action which has no statutory basis - shows how much of a toss they don't give about the law.

They're taking revenge. Last time, you see, we got away with it. We protected a fundamental principle of law. We protected the legal duty we all have, when we citizens hit parenthood. You, parent, get to choose what education fits your child.

Learning - it isn't about verbs and nouns, facts and figures. It's the type of world your child knows; the type of world they are shown as aspirational; the type of world which makes us proud. 'Learning' means who they interact with; how they use private and social space; who they feel accountable towards; who they see as authorities in their world. 'Learning' means all the unwritten rules, the codes of behaviours, the way we can challenge those codes; who can break them, who cannot.

All these intimate, intricate power relationships we stitch into our everyday, which we casually gloss under that word. Education.

But I can see how one law - declaring a parent's duty to educate their child - simply gets in the way. It gets in the way if more powerful people than me are trying to readjust a world of structures and hierarchies and obligations. In our new world, they need compliant citizens who don't ask too many questions; who don't criticize power too deeply; who don't ask that most dangerous of questions: Why?

In someone's vision of society you need to demonstrate all your activities in a public way. Imagine a society where your actions can be monitored, regulated, authorised. Perhaps governments and business work hand-in-hand to pass your identities and personalities between them: to better manage your compliance for other regulations, sanctions and, um, social improvements. Let us then sing our new hymns: Our society will improve! We become a better people! In our hearts is the sun!

In this utopia, some behaviours can be addressed as anti-social, fined and punished. Some behaviours are rewarded. Some behaviours modified. How is your e-behaviour credit balance doing? The score which combines your attitude to learning and your receptiveness to engagement? Welcome to our new age: Social Panopticon.

But are you failing to agree to certain rules? Did you fail to engage in the market this year? Did you fail to show us behavioural compliance with the consensus? Did you fail to demonstrate how you would like to be embraced by technological progress? Um, I think we're now on the territorial fringes of totalitarianism, aren't we?

We old dinosaurs stand in the way. We unhappy band of home educators. We who are not trying to replicate school at home. Clinging to old fashioned, quaint ideas, like The Law. My band, my tribe, those laws, we all get in the way of social improvement.

Me, I won't buy a fridge to help me make online purchases, I'll simply do without a fridge. I won't change my energy supplier, but I'll turn off the lights and lower the heating. I don't live by the consumer world. I can repair things. I can make things. I am resourceful. I am crafty.

What can I say to the Lords and Ladies who are now eagerly supporting illegal action?

Know the world my children know. They know to trust themselves and their own judgements. They know they can change the world. They know that they are valuable people who will touch the lives of others in many positive ways. They are independent-minded, strong, and determined. They are inspired by the powers, crafts, talents and ideals of ordinary people. Not with people who assume power over us.

They know that governments around the world are corrupt. They see how money doesn't reach ordinary people. They know that unbridled corporate power leads to division, greed, and makes a new type of slave-owner. They know that many who take it upon themselves to lead can be easily seduced by money and power.

They also know that home education is just one type of educational structure and in itself it's not a problem. The problem is with shit parenting. And some parents are shit whether they offload the kids to school or shut them in a cupboard at home. If you want the statistics on that, I bet I'm on safe ground to assert that more kids who go to school are abused, beaten up, made into terrorists and nut-jobs by their parents than kids living outside the mainstream schooling routine.

Your basic problem, Lords and Ladies, is this. Schools have become joyless, miserly, soul-stealing exam factories.

Schools who have one eye to their customer base are desperate to off-load kids who are not making them look good. The very kids who need social support. Schools are suggesting to parents they might like to 'home-school'. They're using home education as their cover. Schools, not home education, should be your proper focus. Unless you are particularly vengeful.

Look how governments have demolished and destroyed what children love to do - feel free, run outside, explore the world, engage in hours of child-led play, ask questions of adults who do not know the answer, find out things with people who want to explore as they do.

Governments have destroyed this childhood because these children will grow up to create an adult world which is out of their control. The adult world created by free-thinking people will be dangerous to the controlling, organising powers. We have adults who ask Why? and who feel powerful enough to organise and act. They can create a world of spontaneity, exploration, and radical challenging to traditional vested interests. If you were on the controlling side, wouldn't you want to stop this type of world, dead? And take revenge on those who try to keep it alive?

I'm not engaging with the worlds of Soley and Deech. They represent a future that my children won't have. My children will go about this world, bright sparks, bright satellites, bright thinkers, who'll always ask, Why?

Sunday, 15 April 2018

Who's into Art Deco?

Look, it's a free 1930s armchair, which looked great in our retro office with art deco mirrors and theatre studio lights.

For God's Sake, will someone please take it off my hands?! If I have to take it down the tip, I'm going to be distraught. It's FREE.

Don't suggest ebay, auction, trading site, freecycle, local noticeboard, a reupholstery specialist, the local art school or the local theatre props person.

If you want it, get in touch. This is the closest I've ever come to begging.

Saturday, 14 April 2018

Families who...

This family has moved into new territories.

But my emotional attachments to the landscapes through which we lived our lives, they are still strong.

Our ways of living were informed by our alternative educational choices. Those decision points, in turn, were informed by dozens of well-springs.

At first, we picked our way through practicalities, observations, and loves. We drew on our anti-authority dispositions, our arrogances and ignorances. We bluffed it out and marshalled our forces because, once we embarked, we knew our decision must be the right one for us.

Looking back, I don't regret a minute of our home education journey. Although there were days which felt like a life sentence. Some days felt like a hideous mistake. Plenty of days felt wonderfully, gloriously, free.

Now, in our new landscapes with fresh problems, I need to choose how to support the community that, in one sense, we are no longer part of. But ideologically, emotionally, we stay. Right there.

Changes to the law affect every parent, and every family who have children to educate, by school or otherwise.

What choices we can make, everyday, in this world.

Tuesday, 10 April 2018

I don't want time. I want timelessness.

Emin's phrase is all over the news, setting off my jumping bugs. I am told, this is a love letter. This time thing, it is a love thing.

But the thing about love, for me, is that it throws me into timelessness, not time.

I want that. I don't want time. Time is defined. It has a start and a stop. When I am in it, I am counting; clock watching. I am enclosed, bound from this hour to that hour. It will surely end. I was indifferent, or bored, or I wanted it to end.

That was my time with you.

But when I am in love, then I leap off time; this moment, it was a moment, but it breaks free of its ticking weight. It is timeless; it does not stop. This collision, a cherished moment, a coming together, we can last beyond clocks and the tick tock of their hands.

You can keep your time. Clocks, I can wind them up, pack them away, fold them down, because we do not stop. What survives of us, is love.

Friday, 6 April 2018

Day 2 Chemo Cycle

Dig's lying-down day, cradling a plastic tube, and a bottle. The bottle, not artisan gin, but chemo-mix, delivered to Dig's arm via tube.

He must carry this apparatus around for 2 days. And nights.

Days, it's easy. The bottle slips into a pocket. Nights. Um. We thought, What? What do we do with the bottle? Where does it go? At first, I was terrified of my sleeptime. I would find myself holding onto the tube, now sleep-morphed into a train carriage strap. Then, grabbing hold of the bottle, slumbered into ticking timebomb, I would throw the lot out the train carriage window. The screaming would wake me up.

Thankfully! (You have no idea how much!) The dreams never happened like that (maybe Liam Neeson came to save the day, just in time). Dig secured the bottle into the crook of his arm, and slept, on and off, slowly growing used to the procedure of holding bottle before 360-degree turning.

But we are not only reminded of chemo by means of tubes and bottles. Dig feels its effects in other ways. Room temperature drinks are best, because with extreme reaction to cold, fridges are human skin meeting polar ice cap. Loss of sensitivity in fingers and toes mean Dig stares at his hands, wondering what happened. And, with extreme dry skin - think heat-grizzled river bed - Pliazon has become our new best friend. Pliazon calls itself a 'regenerating, moisturising and normalising cream'. But that is underselling itself. It is soft relief, a gentle freshness, and a reason to smooth hands over the skin of a loved one.

Thursday, 5 April 2018

Day 1 Chemo Cycle

Dig spends the day in the Oncology ward. He is keen to get down there before 10am, because all the best locations are by the wall sockets. Then he can power up various devices with which to pass the time.

I take him down, but I won't come in until late afternoon and pick-up time. Perhaps that is mean of me, I don't know. Instead of coming in and staring at the patients, the floor, the drips, the fluorescent lights throwing a bleak, bland light across us all, there is only the endless television, washing the walls with daytime programmes about car crashes on motorways and how to plan your dream home. I leave to use the time instead in all my practical ways - stitching books, ferrying children, stocking up foodstuffs, visiting the garage, making plans for this summer's garden.

And I tell myself that a chemo ward is not really the place for visitors. I feel in the way, taking up valuable space with my clutter of bags and flasks and books and coats. The floor in the centre of the room is kept purposefully clear. People are lined along the walls, where nurses can access arms quickly, respond to bleeps, position drips and wheel trolleys in a trice. Occasionally there is a great flurry. Modesty curtains are flung across rattling rails; there is the sound of retching, quiet talking, bitter laughter.

There is a leaden quietness about the methodical processes here: it reminds me of an industrial setting, a closed warehouse with set procedures and conveyor-belt timing. Nurses tick sheets, check charts, move patients, raise arms on pillows, balance bottles and drips, concentrate on injections. I feel my feeble attempts to be jolly are misplaced; forced, not spontaneous. I am adding to pressures and obligations. My few jokes are soon exhausted. Without me, Dig can relax and doze. He will have been given a strong antihistamine before the chemo drip is begun, to make sure his body does not react in shock to the poison. This will make him drowsy. Chemo drips take hours, and hours.

I can see the nurses do what they can. They've arranged four seats round a circular table with Homes and Gardens. They've put LED lights round a hand bell, which promises bright sparkling jubilation when someone completes their chemo course. It is a promise that this will end. Cards and notes are pinned to the wall: thank you, thank you, thank you.

When I bring him home, I feel like skipping in the bright sunshine of today. We have escaped, released, demob happy. But not yet. Not yet. Along Dig's arm runs a tube feeding into his body a poison mix held in a small plastic bottle. He tucks the bottle into his pocket for safety and I can disappear the sight of it. For moments, the shortest of times, I can forget, and say, Today I cleared the seat in the garden. I bought potatoes. I paid the electricity bill. I picked up Squirrel at the library. What chatter can be made of an ordinary day.

Wednesday, 4 April 2018

48-24 hours before it begins again

This is what happens in the 48-24 hours before Dig's chemotherapy cycle.

We start with him already frustrated, fed up, disconnected (having spent several days unwell in bed), and unhappy. He's also suffering hiccups again, intermittently, which are not hilarious, as they should be. They cause reflux and abdominal pain while preventing talking, eating and breathing like a normal human being. Cue bleak mood and expression of weary forbearance.

But! On the bright side! Beautiful Husband Dig character-shares with Luverly Wif Grit, the following unquenchable strengths: a strong streak of bloody mindedness, severe independence, quiet obstinacy, and visions of how things might be, if only we could get there.

Shared motto: We have to be imaginative enough to think of it, then brave enough to do it.*

Step 1. Go to hospital for blood tests. I don't go with him, because the test usually takes only a few minutes, and involves the drawing of blood (I have to avert my eyes, or risk passing out).

Today the process takes two hours 'on account of an Easter backlog'. (He probably just fibbed about that, and crept off to scoff a burger from behind the tyre shop, even though he has been banned from doing this by the hygiene certification rule.)

The blood test, as explained to us, is checking he's fit enough to begin the poison cycle. It might involve a neutrophil check, which is his white blood cell count. Under 1? He's in hospital. A bouncy 3.2? Soon he'll be at the starting line in the oncology ward. White blood cells fight the infections that he's almost certainly about to contract.

Step 2. Start taking steroids. These are teensy-tiny tablets. Swallowing these results in a clear-up of all the things you've ever been suffering from. On the other hand, prolonged use of steroids will turn you into a flobby colander before killing you, so thank goodness these are just a quick chemo blast.

Dig's state of mind at this stage swings between weary chemo-worn routines of I don't want anything, to moments of optimistic outgoingness, the sort of energy that expresses itself in: I could just eat a burger from the van behind the tyre shop.

For my part, the experience is not so much procedural needles-and-pills. Instead, it is all emotional complex stuff. I have already done the change of status from Wife to Partner to Person who stands over there-and I cannot remember her Name; back to Wife and Partner and so on. Now I must add another character type to my portfolio and it is Carer.

Shifting persona into Carer can be hard work, especially for a person who learned from her mother (like many other women, I suspect) bon mots such as: Stop whining and pull yourself together. No-one's going to do it for you. No-one's interested in how you're feeling, you just have to get on with it.**

Being a caring-type person who should use none of the above phrases is an adjustment I make. Some days Dig makes that adjustment easy. Probably because to look at his sorrows reminds me of his needs, his vulnerabilities, and the horrible process he goes through daily. Then time and attention is my day.

But this is how things stand as we edge towards Day 1. For me, a sense of powerlessness, and a great deal of fear. To Dig I give the better part of me. Care and love.

* I recognise this motto could be equally used by Macbeth and Lady Macbeth, but ours is meant in a good non-killing-kings way.

**I don't want to pass these attitudes onto my daughters, but I probably do. Girls, I'm sorry. I blame my mother.

Thursday, 29 March 2018

Beat that, Beyonce

Beyonce, if you need a perfect life - because, let's face it, yours isn't quite good enough - then we can swap places, and you can have mine.

Grit's life, more or less as she went about her business and texted to a variety of friends and family.

Oh! #myperfectday.

> Are you still sick? I just rammed the car into a metal bar, dented the door, and smashed off the trim.

> I have bought a bin.

> I will get potatoes from Lidl.

> Of course I drove back and picked up the trim. The garage can glue it back on.

> I bet I can get the dent out with a hammer.

> I also smashed the sidelight. I hope you do not want peas.

> I am at the dentist.

> Shark hates me.

> Does that mean we do not have to pay the £500 fine?

> Yes, I am taking her climbing. I have driven her up the wall. HAHAHAHA.

> We are going to A&E.

> We are coming home. He is malingering. They say clear off until you are dying.

> Thank you. Please say nothing to my advanced driving instructor.

Monday, 26 March 2018

3 Negatives, 3 Positives

1. Planning blight.
What are you doing next Tuesday? Living with cancer treatment turns our calender into a tombola. Pick a date. I might be able to leave the house for more than one hour. Or not. We might be at hospital. I might be recovering from 2 hours sleep after a night spent on a plastic chair in Accident and Emergency. We can't plan next Tuesday like we can't plan a holiday or secure a day trip.

2. Income drop. Sudden, severe, scary.
The accountant has called Dig's career path, adventurous. As in, we work on our wits and make an income from what we can. So far, twenty years on, it worked! But our client hears that word, cancer, and the income of 25k drops to 12k overnight. Maybe it will disappear altogether. Say what? Disasters come in threes? The icing on the cake will be rep from the VAT office come round again to scrutinise the accounts because we have no invoices going out.

3. Increased expenditure in unexpected areas.
Who knew I would need to buy a plastic sleeve? And another one! Thanks to the first being thrown away by accident. Um, maybe because it looks like a plastic bag with a string at one end. And the hospital car parking! Parking the car at the oncology ward, I whisper my gratitude to those people who fought to get free car parking for cancer patients. If it were not for you, my last and treasured one hundred pounds would vanish in a trice.

1. Gratitudes.
I can chronicle the mood swings, tears and temper tantrums, the sleeplessness, terrors, anxieties, hiccups and nausea, and I will. All with the usual and pervasive tone of woe and mortality. But we're still laughing, sitting together round the dinner table, getting jobs done and notching up big successes. Like the children's playhouse, end of garden, now project-planned for conversion into Squirrel's writing shed. Looking forward to that summer clear out, paint from scrapstore, freecycle, old desk installed with home-made bookcases. Ta-da!

2. The people we meet.
People who live another day, ring bells, clap, laugh, tell stories, find beauty in the everyday, count blessings, chase butterflies, watch birds, ask how are things, forgive me, say hello, and simply smile, when I am searching in my heart for the tiniest thing to be glad about.

3. Family and friends.
People, I love you for being so warm and happy to share your thoughts for us. The only downside to this is that I am usually very bad about keeping you updated. I keep resolving to do so on the blog. (Which I know I will do badly.)

My 2 and 3 there, they sound the same. Maybe they are enormous positives, growing beyond numbers.

Tuesday, 6 March 2018

It's not all cancercancercancer

No, indeed. Life is not all cancer. Some of it is theatre! Not theatre of the operating kind, but of the dramatic and fateful variety. Tales of ne'er-do-wells, villains and bad choices, fortunate findings, unhappy women and unhappy endings. Ah, the theatre! Love of my life!

Example: Hedda Gabler. The National touring performance. Now, not coming to a theatre near you (unless you're at this moment in Dublin). We travelled to see this in Northampton. Except we didn't see it. Someone needed an emergency ambulance half way through, and the performance was cancelled. We tried to see it again in Milton Keynes last week. When there was snow. The performance was cancelled to stop us travelling to the theatre. A fact I found out, after I'd travelled to the theatre with a car load of ticket holders.

Example: The Birthday Party. Pintery offerings at the old comedy theatre, London. Plot: Disturbing happenings in a front room. Glad it isn't my front room, although it sets the nerve endings a-tingling, simply by knowing that everything chilling and disturbing happening in your front room is also very ordinary. Would you like a cup of tea with your toast?

Example: Passage to India. Northampton. I didn't go. I gave up my ticket to the Travelling Aunty who had a jolly good evening out with the gritlets. The report back was, 'like the book except on a stage'.

Example: Imperium. RSC, Stratford. Brilliant. I loved every minute of it, this study of Cicero's life, played wonderfully by Richard McCabe, and taken in great gulps over two Saturdays. The construction of the episodes, by zooming in on the players entering Cicero's life, made for unputdownable theatre. I particularly thrilled at Caesar, thoroughly unctuous, played like a horror show that you can't stop watching. I could watch it all again.

Example: Twelfth Night. RSC Live/Cineworld screening. Strangely, I didn't enjoy it as much as I have enjoyed other interpretations of this play, although Adrian Edmonson is a treat to watch. Here, too much emphasis on Victorian singalongs for my liking. But, having paid a dollop and a half for sets like that, I don't suppose you can do much else but use them to put on a musical.

Example: Cat on a Hot Tin Roof. Young Vic/NT Live. (Not Live at All / Encore screening.) I don't think I even tried to get tickets for this live. Sienna Miller without her clothes on? I don't have that amount of money. Thank goodness then, for the Encore screenings, suited for hand-to-mouth merchants like me. All the cast were excellent. The set was perfect. Costumes, sound, lighting, the lot, an example of great professional theatre.

Not theatre, but like it: Knickerdrawer Notebooks, stitched with story in mind. Every book is a book to play with: story, drama, character and, um, theatre. As soon as you hold one of these in your hands, it's a world waiting to be transformed.

(I have to do some marketing somewhere. This weekend, Central Milton Keynes, Stall 13. Vintage and Handmade Show. Come and see me and let's talk drama.)

Monday, 26 February 2018


We have a conversation, all day, everyday. It is, basically, the same conversation, with minor variations. It goes something like this:

Have you taken it?
What is it?

What is it now?

Take it again.
What is it?

What is it?
Perhaps it'll go down.

What is it now?

What is it?
Right. Ring the hospital.
No. I'll take it again.
What is it?
They said 38.
They did not.
They did.
Take it again.

This conversation goes on, and on, and sometimes I ache with the immobility of it, the confinement of it: this is a conversation I cannot leave. I am trapped by it, listening for those numbers to rise, or to fall. By their rising or falling, my actions are decided.

At a temperature reading of 36.6, when the ear thermometer can be laid to one side, there is no conversation needed. I can leave the room, go back to work, drink tea, pop out for milk, muse about the evening.

But as the thermometer beeps, 37.1, I am edgy, watchful, cautious.

At 37.5 I am pacing about the room. The listing of numbers, like a rehearsal, a bouncing of sounds back and forth to each other, this ordeal is in full swing, and we cannot stop.

37.5. 37.6. 37.5. 37.4. 37.7.

On, and on, it goes. At night I sleep in my clothes in case the numbers stop, which they must do, at 38.0.

Day, or night, morning or evening. It doesn't matter. At 38.0, a different set of actions begin. I pick up the hospital bag and wrap scarves around my husband. I run and fetch the car, and order him to wait in the hall and not go back to settle in his office in his stubborn, stubborn way. Fifteen minutes later, I drop him at the Accident and Emergency unit which is the entry point to fluids, drips, bags, wires, tests and staying by his side until we know he will be rattled away on a trolley-bed to an isolation room in a ward where I can visit tomorrow.

These numbers define my life. They are neutropenia. And Dig is in hospital, again.

Monday, 19 February 2018

Chemo Hiccups

Day 2 and the bed is shaking.

At 3am, this reminds me of a once-upon-a-time state. The early days when we couldn't keep our hands off each other. Oh how I wish those days back again! Surely there's nothing to stop those wondrous days returning! Apart from age, exhaustion, children, absence, separations, grief, loss, broken hearts, surgeries, sprains, strains, injuries and arthritis.

But here, in this mocking echo, the bed is shaking. With great heaving gallops. But I know no pleasure at all in this rhythmic shudder. Because these are the chemo hiccups.

They should be funny. Because hiccups are funny. They make the wearer jump, add surprise to any sentence, and give the most serious scholar the air of an unintentional buffoon.

As the bed shakes, I try to find the chemo hiccups amusing. I really do. But truth is, they are wearisome, troublesome jolts that show no signs of stopping whether it be midnight, 3am, or alarm-clock time.

Cold water and surprises are no remedy. My never-fail recipe (sip water through a straw with your fingers in your ears) works not one bit. Sipping hot milk, nada. Standing on one foot, upside down, both eyes closed, deep breath, key down the underpants, nothing works. After several days, and nights, Dig's diaphragm is painful, his muscles are exhausted, and I haven't slept a full night since last Tuesday.

Don't send me remedies. These hiccups originate not in an unsettled stomach or unbalanced airways, but from the vagus nerves, running neck to colon, shocked from the poison that floods Dig's system. I console myself. We are reassured by the Macmillan nurses. After a few days, the hiccups will subside. Medications are available for reflux, aches, muscle spasms and troublesome breathing. Not so readily available is remedy for broken heart, or grief.

Friday, 16 February 2018

Counting the days

Before this started, I was already in a bad way with time.

Time was ever a tricksy sun-and-moon arrangement that bewildered me. In my head I try to hold on to it: a single moment, a hand clasp, a kiss, an arrangement of flowers, and I look up to find the day has passed and the month is ripped from the calender.

I have often thought myself lucky for my inabilities with clocks. It creates a detachment, for here are moments of timelessness when I can wonder, and dream. I have been fortunate. To live outside of set hours is to be open to spontaneity, to distractions, diversions, and wanderings.

But now, now, I live to a different rhythm. I live in Cancer Time. I have lost the reminders of Monday. Tuesday. Wednesday. That patacake rhythm that clapped me through the weeks and placed some structure round my wanderings. Now I live with numbers to mark the days. 1. 2. 3. They tell me what to do.

I count them out. Write them in pen to my diary. 1drip. 2pump. 3flush. 4. 5. 6. *Beware 7-12.* 13. 14blood.

The numbers are important, because they dictate my actions, outline my freedoms, define my behaviours.

This is how I know them.

1. I drive Dig to the hospital and leave him in the Oncology Ward where he is hooked into a plastic tube delivering a Chemotherapy drug. The drug enters his arm through a line which people refer to as a picc line. He is marked; pin-pricked. As if a map of his anatomy is pin-pointed to the exact location where this drug must enter. A fine line tracks into his body, from the outside to the inside; plastic to flesh; colourless liquid to living, breathing human. He stays there all day.

2. He is at home with a small bottle and tube through the day. He sleeps two nights with a small bottle by the bed. This is easier than I expected. At first, I thought I couldn't hold him through the night, but we have found we can place the small plastic bottle to one side to hold one another.

3. I drive Dig back to the hospital for the bottle and tube to be removed, and his arm cleaned. This is a process which the nurses call flushed. It is a word like a reward. We won. Dig is demob happy, but will be tired, and sensitive to cold, so Day 3 means that I turn the heating up and keep the rooms at coddling temperature. I overheat. I sometimes try and fool him, and slide the thermostat dial down a notch or two, but his body shivers, and back up to 20 that number will go.

4 to 6. We have learned this. Go out. Go to the cinema. Go to the shops. Walk, if that's possible, along the road and back again. Work. Answer emails. Write a little. Read a book. Be distracted by ordinary things. These are the pleasure days.

7 to 12. The chemotherapy drug works by killing what it can, including the body's ability to fight infection and keep the body safe. A sign that infection is taking hold is a rising body temperature. If Dig's temperature reaches 38, I leave a note for the children and pick up the bags I've packed. We spend the night in the Emergency unit. After 4 hours, Dig is given a place to lie down. Blood tests are taken and fluids are given. I doze on 2 chairs pushed together. By 5am we know whether Dig is coming home, or staying in the hospital for 3, maybe 4 or 5 days. The first week, he came home with tablets, 3 times a day. Week 2, he stayed in isolation 3 days until his body's ability to fight infection recovered. The magic number, when he can come home, is 1.

13. We can breathe, assess progress, count blessings, look at the diary, count numbers.

14. Blood test. Before each chemotherapy cycle, Dig has a blood test to make sure his body can take the poison we hope renews life. The cycle starts again with 1.

Tuesday, 13 February 2018

Thinking it through before I begin

It's taking me some time to think how I want to write about life, living with Dig's cancer. My uncertainty stems from my precarious position. This is uncomfortable. I don't know the story. I don't know what will happen. I can't be certain about anything. And I can't yet answer this most basic question: What is this bomb blast that surrounds us, as we get up every day to tread our normal paths?

A large part of me answers, then don't write at all. And certainly not in public. Head down, keep going. No one is a part of this, except us.

But I respect the shared human knowledges that come through text; the hand-holding of folk wisdoms; the comfort of the written word. Blogs, forums, anecdotes, discussion lists, interest groups. They've all been friends to me. They are reminders; to do lists; promissory notes. Don't forget this will happen. Be prepared for that. Watch for the impact of this drug. Have you tried this? Did you remember to ask when you had the chance? Maybe our experiences can be useful, from me to you.

But then again, I know that my purpose for writing is utterly selfish. Here's my self-indulgent therapy of a tippytappy keyboard. Words remind me to have a goal, a focus, a point. They help me put one foot in front of another, and remember what I'm doing. Now I want to record the days to know that they were here. In them, we lived. And through them, I know I can find my cold eye to turn on my own experience.

But what is this story I'm telling? I don't want it to be drugged up with words like Oxaliplatin and  Fluorouracil. You can find places enough for those. I want it to be a story with love and gratitude, kindnesses and bright sides. And humour. Because if we don't laugh, we don't survive.

But there are moments, many, many, when the path's all messed up; the words are jumbled, and not much meaning will arise. But if you're facing cancer, that just might make sense.

Wednesday, 17 January 2018

How many battles would I like to fight?

Not content with Dig's cancer diagnosis - for which the blog will morph into a whining pile of self-pity larded with too-much-anatomical-information* - I could choose other battles too!

1. Lord Soley Bill. Oh, you school choosers! How fortunate you are! You are cocooned already by the Corporate Curriculum. Your frogs are a nice, warm temperature. You know nothing of struggles out here, in the land of the free. Our frogs are still fighting.

We won't be free much longer, if LS et al. get their way. We'll all be at gas mark 9. No child left behind? Every child matters? There is a pragmatic behind that. These days, every citizen is an asset waiting to be stripped for the $$$$$ payback. The education budget translates into a lot of yachts.

2. Or I could choose the ongoing misery that is Squirrel's School. The battle is simply this: to get the school to stop treating Squirrel like a person of no independent thought, and start treating her like a young woman who has chosen to be there. The irony is: Squirrel is the least likely person to cause them problems.

Squirrel is laid back, easy to get along with, widely educated, articulate, fluent, an A-grade candidate who just asks Why. Yet the school cannot figure this, throwing themselves on techniques of reprimand rather than discussion. Not surprisingly, they have made for themselves a basic problem: that Squirrel doesn't fit the conveyor belt they have built. They have been creating consumers of facts, but Squirrel is a producer, creator, original person who makes her own destinies. She wants the school for 3 A Levels, not for their insistence on detailed scrutiny and control over her every action.

I do not know how you school choosers handle schools when they turn ordinary kids into problem kids. For a parent, it must be a long journey into emotional pain.

What I do see is that the Modus Operandi of the school is attempt to divide parent and child. It feels to me as if there must be the School Rule Book paragraph 1.3: To divide and rule, insinuate/use downright lies. Paragraph 1.4 probably suggests offering stuff like, 'your child is best supported by supervision to address their underperformance'.

I feel fortunate to be able to calibrate this nonsense by 17 years of self-directed learning in a virtually non-supervised home ed environment. This at least I can use to assess the quality of school 'supported supervision to target underperformance' (a seat in the library independent learning hub, on her own).

3. Myself. Yes, I can beat myself up any day of the week for various shames, guilts, losses, griefs, despairs and sorrows! Currently, I am in battle with life itself, facing (not for the first time) a profound overhaul of all my assumptions, expectations, wishes and desires.

Looking on the bleak side, this moment is something I am used to, this teetering-on-the-edge moment; knowing that I'll be leaving behind what is familiar and comforting; knowing that I am about to be pitched into the strange, fearful, bewildering, unfamiliar, scary. I feel ill-equipped to deal with it all, but know too that I'll be thrown into reliance on my instincts to chart a way through, and that will make a different person of me, once again.

* might be useful, if you face the same

Friday, 12 January 2018

Candidate for worst day of 2018, so far.

1. We receive an email from Squirrel's prison. Previously, on Prison Update, we have suggested Squirrel needs a slightly more flexible timetable. Without the attentions of a school for the last 16 years, she has self-educated to A-grade GCSE standard, and can do private study, thank you very much.

But! Squirrel's prison insists! Squirrel must be present in school for all her non-contact 6th form day. i.e. from 8.30 to 3.15. Even if she has just two contact hours that day. She must present herself at the extensive self-learning hub (aka library).

The library, I need add, consists of one shelf books, a desk, and a chair. Here she is supposed to 'study' while being supervised. Mmmm. Supervised study looks an awful lot like being chained in solitary confinement as in a monk's cell. Tell me, is this the Modern Expectation? Fine, then, study away! But if study means educating yourself with the aid of 7,000 books, five computer systems, an office equipped with uptodate software, her private space with all stuff, books, resources, own networked computer, and Planet Internet, then, um, come home.

Sorry to pull rank, you crappy-equipped crappity crap prison, but we can do better.

But! Squirrel's prison says she needs to be in school, alone and chained to a desk if she is to perform. They also added, for good measure, some acronyms, and the novel idea that Squirrel needs to be in school because then they can give support. Squirrel has worked out that this support must mean the 'Independent Study Self Learning Hub Supervisor' (aka librarian) shouting Be Quiet to the 6th formers hiding in the space under the stairs.

2. Shark had two teeth extracted. Shark was all, Uh? what is your problem. I can have two teeth extracted any time. I'm taking that in my stride, so stop whining, because it is embarrassing. I nearly passed out.

3. A pot of cream threw itself, with full Verdi operatic drama, out of the fridge as I opened the door. The cream splatter was over my shoes, the floor, under the fridge, across the wall, down the curtain and in my face. It was the La Traviata moment of fallen cream. Mop-up took an hour.

4. I had an Angels and Demons argument with Tiger over a pack of balloons.

5. Dig finally told the children about his diagnosis of cancer. As every Good Husband know (learn from his Good Wif Grit), you introduce bad news only after eating dinner.

6. Donald Trump is still heading up the USA, sending us all to global warfare, so what does anything matter? We're all going to die anyway.

There is no bright spot to any of this, except number 6. La famille Grit now has a new phrase for any family member exhibiting pugnacious behaviour, ill-tempered hostility or general belligerence. Don't start getting Presidential.

Sunday, 7 January 2018

12 Days of Christmas: what day is it?

I have lost all track of time. The Christmas tree is down, on the stroke of Twelfth Night, as is customary in these parts. Clearly, that phase of the year is done for us.

I have lost time because all my attention is focused on Dig and the kids. The kids are back at their respective prisons, and it has come hard to all of us. Dig, he of weak and fragile constitution, requires special attention, so for him, I am attentive, and consider myself candidate of Best Wif Badge.

But I learn much! Never having done much Good Wiffery, I now find that some elements are important to this culture called Good Wif Service. I discover that Dig's requirements include the following:

Muffins. (Part 1) They must be scored properly otherwise 'it is all horrible'.
Muffins. (Part 2) They must be served at the right temperature otherwise 'they are inedible'.
Water. Must be served tepid and in a thermos flask otherwise it is squeally noise.
Paracetamol. Capsule type, not effervescent nor breeze-block type. Otherwise it is 'uughghgughghg'.

It is intriguing, I can say that, learning new things about one's partner of nearly 30 years. How lost time is all about reflecting.

Tuesday, 2 January 2018

12 Days of Christmas: 9

I've had enough of this Christmas lark now, thank you very much.

I'm clinging to my 12 days only to fulfil my fantasies of wearing my Tudor smock and burning my evergreen next to the pig pen.

That is what I have decided to do, by the way. I am going to become an old woman. Maybe an old woman peasant fitted to some Central Asian state, circa nineteenth century. In my mind's eye, I have padded felt clothing and my middle is tied with string. I am in retreat. Perhaps I have heard about the railways, but my donkey is just fine. Also, I have a ladder to mend the roof. And I live alone. No folks pass this way. I will eat the pig next year. This year, grass.

This is my new fantasy, because times are hard. They are going to become quite, quite Worse. It is possible that for a while I will become mad.

Anyway, because we tell each other that life is filled with bright sides and lead silver, for the time being I still hold onto my Cineworld card.

Rich rewards then, because today we see the Cineworld advance screening of Three Billboards Outside Ebbing, Missouri.

This film is fantastic. All hail to McDonagh's writing, which pulled no punches at all and hit me straight between the eyeballs. That is a rare treat, to be punched in the face by a writer of uncompromising words. And splendid acting. I want Frances McDormand to go on and on, forever. See it, as soon as it comes out, for a perfect study of characters in a small town exploring extreme states of vengeance and justice.

Unless you like romantic comedies to take your mind off 2018. In which case, avoid.

Monday, 1 January 2018

12 Days of Christmas: 8

New Year's Day! Dig has bought me, amongst other treats, a radical year, in the shape of the Verso Radical Diary.

Did you know, January 1st 1994, is the day that Zapatista forces overtake towns in Chiapas, beginning an ongoing revolution against the Mexican state?

Personally, I wouldn't trust the leaders of the Mexican state any further than I can throw them, what with the border drug wars, reported corruptions and missing students. But strangely, they did briefly get my sympathies last year when Toddler Trump got into the sand pit.

Troublesome times, this 2018, when one is thrown into sympathies with torturers in order to avoid association with an unhinged narcissistic sociopath.