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.