Day 250

Just after eight this morning, I went for a dog walk. It was unzipped jacket with a light scarf sort of weather. Beautiful blue sky. I was keenly aware of the pavement beneath my feet, the dogs’ leads in my hands, and a deep sense of gratitude.

I’ve been aware of a milestone approaching. Day 250.

250 days since I began treatment for breast cancer, which, in my case, was chemotherapy. 250 days since I walked along a corridor at The Beatson West of Scotland Cancer Centre to the Macmillan Day Case Unit. 250 days since my first infusion of Docetaxel.

What I couldn’t have known on that Thursday was that three days later, just after eight in the morning, I would phone the Beatson emergency helpline to say I was spiking a temp. Or that I would be told to go immediately to the Queen Elizabeth University Hospital, be sent home a few hours later, then phone the emergency line the next day to say I was still spiking a temp and felt dreadful.

I couldn’t have known I would spend seven hours that Monday in a busy, noisy Emergency Department waiting to be seen by a doctor, and when I was, and my blood results came back in the wee small hours, that I would be told I had sepsis.

250 days ago, I had no idea those things would happen. I also didn’t know that I would have four further unplanned hospital admissions. Or anything about the ‘bear hugger’ I would be put in at some point during my third emergency admission because my temperature had dropped so low due to a chemo-induced infection.

I think it’s fair to say that back then I was pretty rubbish at chemotherapy. Had it been an exam, I’d have been lucky to scrape a C.

I’m better at it now.

Granted, the treatment I’ve been on since March (TDM1) is very different from the chemo I had pre-surgery, but, even so, I’d like to think I might be edging towards an A.

My body’s ability to cope with TDM1 is just one of the things I was grateful for on my dog walk this morning. I also felt gratitude for every bit of kindness and care I’ve received over the last eight months. From doctors, nurses, pharmacists, medical secretaries, receptionists, folks at the brilliant Beatson charity, from my family, from neighbours, from friends old and new.

In the last 250 days I’ve had eight cycles of pre-surgical chemo, two surgeries, fifteen sessions of radiotherapy and am now in cycle three (of fourteen) of TDM1 treatment.

I lost my hair, my eyebrows, my eyelashes, my sense of safety, my sense of dignity (did I mention the campylobacter infection that accompanied the sepsis…?), but not my terrible sense of humour.

I couldn’t have managed it without each and every person who wrote me an email, sent me a text, posted me a letter, hand-drew me a card, knitted me a hat, gave me a scarf, bought me thick woolly socks, sent me flowers, went for a walk with me, made me banana bread, supplied me with Pan Drops, sent pyjamas across the Atlantic, carefully chose a book for me, dropped off a care package at the door, said a prayer for me, or took a moment to wish me well.

Getting to day 250 takes a village.

I’m very grateful for mine.

Day 218

It’s 218 days since I first walked along the corridor to the Macmillan Day Case Unit at The Beatson West of Scotland Cancer Centre. 214 days since I was admitted to the Queen Elizabeth University Hospital with neutropenic sepsis. A day since I last walked along the corridor to the Macmillan Day Case Unit.

In the meantime, I’ve had another four unplanned hospital admissions and two planned ones in three different hospitals. The unplanned four were for chemo-related infections and the two planned ones were for surgery.  

It’s a lot.

And that’s okay.

But it’s a lot.

I cry more than I did. It comes on unexpectedly and has a primordial quality. It mainly happens when I’m alone, but sometimes there’s a witness.

In my mind’s eye I see the face of a friend. I facetimed her from hospital 200 days, or so, ago. I didn’t speak. I just cried.

The moment is etched in my memory and whilst I wish it hadn’t happened, for her sake, it’s a reminder that I’m not alone in this. That those who love me are willing to be there even in my most difficult moments; to witness emotion I struggle to identify – anxiety, despair, fear, grief, hopelessness?

Today I cried for reasons I can’t pinpoint. Yesterday I had the double whammy of radiotherapy (13 of 15) and an infusion of TDM1 (2 of 14), so it might simply have been exhaustion. For the first time in 218 days though, I wanted to write about it.

Writing has long, for me, been a way to better understand illness. In my case, multiple sclerosis. To help make sense when there seems to be none.

The desire to return feels good.

Like I’m becoming me again.

I’ve been collecting objects and images that will someday be included in a project with the working title Artefacts of Illness. The photo below is of Area 2 in the Macmillan Day Case Unit at a little after 6pm yesterday when things were winding down for the day.

it is what it is

It’s been a while. A while of not writing.

A while of having nothing to say.

Except certain phrases:

Don’t get cancer.

It’ll be fine.

It is what it is.

I say them often. On a loop.

Not to the same people.

I seem to reserve Don’t get cancer for friends. People my age, or within fifteen years of my age, give or take. And when I say it, I mean it. Like I can prevent cancer from happening with words; as though I can ordain it to be so; demand that this not happen.

An imperative; an incantation; a command.

I don’t want anyone else to live this experience and yet I now know it’s a concrete possibility. There’s nothing I can do to stop it. Except issue this directive and cross my fingers that words have a power I don’t possess.

Family members are most likely to get It’ll be fine.

And it will be fine.

I feel it in my water and in the kindness and good wishes that encircle me.

I feel it in the treatment I receive. I feel it in the care I’m given. [I’ve learned that treatment and care are not one in the same. This is a thought for another time. A time when I have more words.]

It is what it is seems to be for everyone. It’s indiscriminate and uttered most frequently.

I’d like to have more words. But I don’t. Not yet.

I’ve been told this is a season. A season that will pass.

When it does there will be words.

I promise.

Birds of a Feather

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On March 24th, a friend and I got together over Zoom. We’d both initiated lockdown the previous week, as we both have multiple sclerosis, and thought we might like to use the time to collaborate on some sort of creative enterprise as a way to pass long lockdown days. We’re also both writers. Georgi a poet to my fiction writer.

By the end of the call, we’d signed up to two projects (not quite in blood but with our fiercely perfectionist natures, we might as well have done). The first leant more into Georgi’s artistic disposition and the second into mine.

They Closed the Real World is a Google Doc in which we respond, turn about, to the world in which we find ourselves and to the writing that has been left there the previous day for us. Georgi’s first entry into this document ended with the following: We sit and drum on our keyboards, typing quickly, making sense slowly. We’re safe. Hope you’re safe. Jealous, we listen to the birds. Their real world is open – shifted, yes – but wide and open.

I responded as follows on March 26th: I listen to the noise of the sirens as I once listened to birdsong. Something in me stops. Attends. Imagines the body from which the sound emanates. Metal now, not feathered. No tiny skeletal muscle moving in time to the notes; drawing down morning air and releasing it as music. I think of that Larkin poem. Ambulances. All streets in time are visited.

Socially Responsible Looters is the second Google Doc. It’s very sweary (leaning into my love of expletives) and is a novel in progress. The idea being that two characters meet at Harthill Services just after lockdown has been declared. One is heading east on the M8, the other west. Both sides of the service station have been abandoned. Abby, Georgi’s runaway teenage character makes her way to the other side, where she encounters my character who is a forty-something bundle of backstory and badness.

Neither of us knows anything about the other person’s character or plot intentions and we both seem to derive sadistic pleasure from gifting a tricky twist to start the other’s writing day.

I’m a little numbers obsessed, so copy and paste my Google Doc entries into a Word Doc entitled: G & G Projects. As of today, it has 32,600 words in it. Not bad for 96 days.

We’ve decided to have a little more fun, so met via Zoom on Friday to discuss the Socially Responsible Looters Podcast we plan to do. Watch this space…!

If you’re interested in learning more about our collaboration, Georgi wrote a piece for the MS Society that was published to celebrate National Writing Day on June 24th.

Georgi’s piece

 

When Pain Doesn’t Define Your Story

The Writers' First Aid Kit

I’m thrilled to be leading an online fiction writing workshop with Glasgow Women’s Library on June 25th. The one-hour workshop is designed for women who experience chronic pain and offers an opportunity for participants to try out fiction writing as a means of distraction to help manage it.

I discovered the power fiction writing has to distract me from chronic pain, quite by accident. To fill the time during an extended period of bedrest after an MS relapse, I  began to write and noticed that when I was fighting with word after word and sentence after sentence, I didn’t notice my nerve pain (which might normally be described as the sensation of broken bits of glass being pressed into my skin).

I wrote fictional tales inspired by my interest in the people I would see when I ventured out of bed and into the waiting rooms of hospitals, clinics and GP surgeries. I made up stories about the lives of the people I saw: a young man struggling to stand up; a middle-aged couple bickering their way through the dead time until the name of one, or the other, was called; a well-dressed woman speaking quietly into her phone; an elderly couple holding hands.

In this way Ian was born. I gave him a wife, Gemma, and two young sons. I wrote about Sarah and Craig Anderson. Childhood sweethearts who weren’t so sweet on one another anymore. There was Jean and her husband John, married, and in love, for twenty years. Each time, I would give one of them a neurological illness. I was curious to see what effect it would have on them: on their relationships; their friends and their family. Perhaps it was a way for me to explore the future. Importantly, it kept nerve pain at bay.

I thought this might just be something odd about me. Perhaps for others the drugs worked and they didn’t need to resort to writing. Then I read about phantom limb pain, neuroplasticity, distraction technique, and it began to make sense, so I kept writing both for the pain relief and the opportunity to inhabit other people, other places, stories that weren’t my own.

I’m excited to lead the workshop and have others try out fiction writing as a distraction to help manage chronic pain. It’s now fully booked, but we’re planning to hold a second one over the next couple of weeks, so if you’re interested in attending please don’t be put off, just add your name to the waiting list.

ONLINE: Fiction Writing to Help Manage Chronic Pain

 

 

Stories from Home

IMG_1068 2I’m thrilled to have work in the anthology, Stories from Home. All the proceeds from its sale are being donated to The Ambulance Staff Charity. TASC offer emotional, financial and community support to paramedics, ambulance crew and their families across the UK. They say of their work, ‘We’re passionate about caring for the mental, physical and financial wellbeing of those who care for us. Because they care, we care.’

In the introduction to Stories from Home, editor Hayleigh Barclay writes, “COVID-19 has brought about numerous changes for us all throughout the world. However, for our Ambulance Service staff, their dedication and frontline care has remained consistent despite facing extraordinary times.” She goes on to explain, “Now more than ever our ambulance crews deserve our appreciation – they are first on hand in an emergency, saving lives before patients even reach the hospital, reassuring relatives whilst simultaneously responding to a crisis.”

My two stories are, Carole and Rumbled.

Carole was written on a spring day in 2018. Our third Wisconsin winter was finally over, or so I thought. After months of frigid temperatures and an outside world hidden under snow, there had been a thaw. Patches of green had become visible for the first time that year. I got up early one morning and everything was white again.

Ronnie was on a work trip to Malaysia so I was home alone with the dogs. I made my first coffee of the morning and sat down in the room in our beloved old Neenah house we called the snug (with its fireplace and bookshelves for walls we couldn’t help but be reminded of a cosy backroom snug in a Scottish pub). I watched the snow inch higher and higher and I began to wonder.

What if. What if today had been the day someone somewhere had planned to do something of consequence. Something they’d been working towards for months.

The snow fell all day long. It obscured everything. My garden. The street beyond. I wrote to its slow, steady rhythm. I conjured up Carole. I invented a life for her. A life changed by an unexpected winter storm that arrived in spring.

My second story is called, Rumbled. I’m not sure it’s a word with which my American friends will be familiar. We use it on this side of the pond (or at least in my bit of Scotland) to denote that the truth about someone or something has been discovered. In this case Susan, the narrator of my story, despite her attempts at misdirection, will be rumbled by the reader.

I’m honoured to have my work included in this anthology. The poems and stories in it are brilliant. Amazing writing with something for everyone to enjoy. My stories are fortunate to keep such fine company.

If you’d like to read the anthology and support the work of TASC as you do, here’s a link for friends in the UK and one for friends in the US.

Happy reading!

Illness: A Narrative in Four Parts, Parts Three and Four

I’m very grateful to The Polyphony for serialising my essay on being diagnosed and living with multiple sclerosis. I much prefer writing fiction, but over the last three years I’ve had to push the boundaries of my comfort zone and write four non-fiction essays as part of my doctoral project on the relationship between object and illness. Illness: A Narrative in Four Parts was the first of these essays. I hope it provides something of a context for my project and for the fiction I write.

If you’re interested in reading more of the essay, here are links to parts three and four.

https://thepolyphony.org/2020/05/06/illness-a-narrative-in-four-parts-part-three/

https://thepolyphony.org/2020/05/07/illness-a-narrative-in-four-parts-part-four/

Many thanks to @the_polyphony for serialising my essay and to the wonderful staff and students of @UofGWriting for the encouragement and support I’ve received.

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Illness: A Narrative in Four Parts, Part Two

My four-part hybrid essay is a piece of memoir that explores my experience of being diagnosed with, and living with, multiple sclerosis. In part two: I’m moved from the emergency receiving unit to the skin ward (because there’s a bed in the skin ward); I have to break bad news to loved ones; I spend my first night in a hospital bed; and, in an attempt not to have to spend a second night, I make a bad decision.

https://thepolyphony.org/2020/05/05/illness-a-narrative-in-four-parts-part-two/

With many thanks to @the_polyphony for serialising my essay.

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Illness: A Narrative in Four Parts

I’m a fiction writer. It’s what makes me happy. But sometimes I write fact. A case in point is an essay I’ve written for my doctoral project entitled Illness: A Narrative in Four Parts.

My essay is being serialised this week in the brilliant medical humanities journal, The Polyphony. If you’re interested in following along, part one can be found here: https://thepolyphony.org/2020/05/04/illness-a-narrative-in-four-parts-part-one/

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Filling the Days

A friend sent me a message yesterday to ask if I could offer any tips on “the craft of keeping to a routine and filling your days whilst maintaining good well-being in all its forms” during this difficult time. I presume her reason for asking me is that in March 2007 I found myself in a form of lockdown.

I went to work on a Friday morning (blaming the unusually bitter spring weather for the cold numbness that had crept into my toes) and by the wee small hours of the following Monday I was in the emergency receiving ward of our local hospital having lost the feeling from my toes to my thighs. I wouldn’t return to work until June and, even then, I was only allowed to do so in a phased return (three hours a day on Tuesdays and Thursdays).

The reason for this turn of events was an episode of transverse myelitis (TM). TM is a disorder caused by inflammation of the spinal cord. There are four classic symptoms:

  • weakness in the arms/legs
  • sensory symptoms such as numbness or tingling
  • pain and discomfort
  • bladder dysfunction and/or bowel motility problems

TM can also be an early symptom of multiple sclerosis, which is what I was diagnosed with in the May of that year. By this time the numbness and altered sensation was not only affecting my feet and legs but my torso, arms and hands as well.

I had to adjust to a long period of bedrest and the disruption this confinement would wreak on my previously busy life (as a secondary school teacher with a husband and two dogs). Bearing in mind this happened thirteen years ago, my options were a bit more limited.

  1. I began to fill the days by playing solitaire on my laptop. Game after game after game. I played solitaire so often I figured out how to cheat against myself, just to mix things up a bit.
  2. After hundreds of these games, I started to write poetry. My intention was not to produce publishable work, it was just to write because, as someone who is a bit obsessed with words and language, I found that it was an excellent way to distract myself from both the discomfort and the long hours spent alone.
  3. A friend of a friend did a genius thing. A kind thing. She dropped off a stack of DVDs. There were loads of them. All contained tv detective programmes that were new to me – most were from other countries. I binge watched episode after episode on my laptop before I learned that it’s sensible to ration the good stuff.
  4. My husband loves to cook, but up until this point I had pretty much taken for granted the pleasure of eating a really nice meal. That stopped. I began to savour each bite of every meal that was brought to me by tray. This also allowed me to help my husband who was finding it difficult (as an engineer) that he couldn’t fix me or the situation. He wanted to help and his cooking became a tonic for both of us.
  5. I allowed myself to become curious about the way the texture of time had changed. Its passing was somehow different and I chose just to hold the thought rather than worry about what it meant.
  6. On a daily basis I reminded myself that this bedrest and the isolation it inevitably brought was for the best. It was helping my immune system to calm down and my body to recover. It would allow me to be able to go outside again, maybe not in the next day or week, but eventually.
  7. I made plans for things I wanted to do when I was able to return to “normal life”: join a poetry class; take up knitting; climb Ben Lomond for the fourth time.
  8. I also did some unhelpful things, like ordering a miracle cream for nerve pain off the internet and reading too much (and too indiscriminately) about the disease with which I’d just been diagnosed. However, this did teach me the difference between helpful and unhelpful activities, so I’m taking it as a win.

As friends and family will know, I’m a bit obsessed with numbers. I like even ones, particularly anything with an eight in it. It therefore seems appropriate to stop my list here. I hope there are things that could be extrapolated from it that might prove useful. Maybe drop off a nice meal or a stack of great DVDs to someone who’s self-isolating; allow yourself to be distracted by something you enjoy: reading, writing, knitting, drawing; don’t buy anything described as a miracle off the internet.