Monday 26 February 2018

37.5

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?
[Beep]
What is it?
37.1

What is it now?
[Beep]
37.2

Take it again.
[Beep]
What is it?
37.4

[Beep]
What is it?
37.3
Perhaps it'll go down.

What is it now?
[Beep]
37.2

What is it?
[Beep]
37.5
Right. Ring the hospital.
No. I'll take it again.
[Beep]
What is it?
37.5
They said 38.
They did not.
They did.
Take it again.
37.3

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.