Stories from
the day hospice
By Chrissie Giles
With illustrations by Marianne Dear
1/
Thank you
Contents
With thanks to the patients, families, staff and
volunteers at Princess Alice Hospice, Esher
(www.pah.org.uk).
Foreword5
Introduction: Stories from the day hospice
6
Post-its10
Good bad jokes
12
Aldona14
On the ward
16
Objects18
Rory20
Blowing hot and cold
22
Life, death and an egg salad sandwich
24
Jackie26
The easy tree
28
A little less conversation
30
I am also endebted to Gillie Bolton for her advice
and her book, Write Yourself (Jessica Kingsley
Publishers).
For Edward and Kevin, and dads everywhere.
With thanks to:
First published in 2013 by Wellcome Collection, part of
The Wellcome Trust, 215 Euston Road, London NW1 2BE.
wellcomecollection.org
Copyright © The Wellcome Trust 2013
3/
Foreword
“
You matter because you are you. You
matter to the last moment of your life,
and we will do all we can, not only to
help you die peacefully, but also to live
until you die.”
Dame Cicely Saunders, founder of the modern hospice movement
Your local hospice isn’t just about inpatient care.
Hospice care is also provided in people’s own
homes, through outreach into other settings
such as care homes and in day centres based
in hospices (often known as day hospices or
palliative day care services).
Despite the challenges of living with a serious
and potentially life-threatening illness, day
hospices are places characterised by the sound
of laughter and a strong sense of hope. I know –
both from my experience of working in hospices
providing palliative day care and from research
I have undertaken in this setting – that people
derive a strong sense of optimism, comfort
and great camaraderie from being part of the
community of palliative day care.
Day hospices provide a variety of services –
ranging from nursing and medical assessment
to creative activities, complementary therapies,
advice and information. But perhaps most
important is the relationships that individuals
make with each other and the staff and
volunteers involved in their care. Through these
friendships people share all sorts of stories,
memories, thoughts and ideas. They are often
funny, sometimes sad, and always insightful
and inspirational.
4/
At the heart of hospice care is an ethos of
valuing and respecting each person and tailoring
care to their individual needs and wishes,
however big or small. It is fitting, then, that in
‘Stories from the day hospice’, hospice care is
brought to life through the voices of individuals
and their personal narratives. Although these
particular stories came from a single hospice,
I am confident that they will be similar to those
of the many people across the UK who benefit
from hospice care each year.
It is my hope that these stories will dispel some
common misconceptions about hospice care
so that more people facing terminal illness can
benefit from the personal, dignified care on offer
from hospices. Most importantly, I hope that you
enjoy reading the stories and are inspired, like
me, by the courage and creativity of all involved
in bringing the day-to-day experiences of this
world to life in this publication.
Heather Richardson
National Clinical Lead, Help the Hospices
(the UK charity for hospice care)
www.helpthehospices.org.uk
5/
Introduction: Stories from the day hospice
“You want to hear stories of my life?” one
woman asked. “Most of them are X-rated.”
It wasn’t the first thing I was expecting to hear
when I walked into the day hospice, but then,
what did I expect? If I’d ever been in a hospice
before I didn’t remember – and it doesn’t seem
like the kind of thing you’d forget.
I’d come to the Princess Alice Hospice in Esher
to discuss setting up a creative writing group.
Two things in particular stick in my mind from
that first visit: how warm it was inside and that
everyone greeted each other by name.
The plan was to work with a group from the day
hospice. This part of Princess Alice Hospice
opens four days a week and gives day patients
the chance to come in and socialise, relax, get
creative and have some complementary therapy.
The nurses see each patient to make sure their
symptoms are under control. Chaplaincy and
social work staff offer spiritual, psychological
and emotional support. More than once
someone snuck into the writing group a little
late, blaming a conversation about a walking
frame or shower seat, or shiny-handed and
fragrant from a massage.
We met for an hour once a week, with a couple
of unscheduled breaks, over the summer of
2012. In the stories that follow (text and audio
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available at wellcomecollection.org/hospice),
I’ve recorded some of the more memorable
experiences of my time in the
day hospice. Unless stated otherwise, names
have not been changed, as requested by the
group members.
said, on hearing her husband’s cancer diagnosis,
“It’s the end of life as we know it”. In those few
seconds, life is immediately, permanently and
often terribly different, and you have no choice
but to live with a ‘new normal’.
“
Days and weeks become punctuated with
hospital appointments: chemo, radiotherapy,
physiotherapy, nutrition, counselling; visits from
the district nurse and community nurse; trips
to the pharmacy. Everyday tasks can become
exhausting. The things you do for pleasure may
be more difficult or even impossible now. Can
you still drive? Can you still work? Can you be
left alone for extended periods of time? How do
you relate to your loved ones now? How do you
relate to yourself?
We’re all dying, but unlike
the people here, we don’t
have a stick in the sand.”
Dr Craig Gannon,
Deputy Medical Director
It’s striking when you spend time with people
living with a life-limiting (terminal) illness how
fluid ‘normal’ is. Things get turned on their head,
and patients, their families and friends find
themselves regularly reappraising who they are,
what do they do and how they fit. At the hospice,
I constantly found myself wondering how I’d
cope in a similar situation.
Most of us live with what is essentially a
functional denial of death, allowing us to exist
with the knowledge that no one lives forever
while ignoring the fact that death will happen
to us and everyone we love.
Given a diagnosis of a disease that will probably
end your life, everything changes. One carer
“
It’s not just preparing you
to die – that’s part of it –
but also about preparing
for the best.”
Dr Craig Gannon,
Deputy Medical Director
psychological, social and spiritual care, help to
stay independent, complementary therapies,
financial advice, and bereavement support.
‘Palliative’ refers to an approach that aims to
prevent and relieve suffering, in this context,
towards the end of life.
There are 28 beds at Princess Alice Hospice.
These are used to provide terminal care – that is,
up until a person dies. People are admitted for
other reasons, too: for help with controlling their
symptoms, rehabilitation (such as physiotherapy
or occupational therapy), respite care (to give
them and their carers a break) and psychosocial
crisis (or “scoop and rescue”, as one member of
staff neatly phrased it), when a patient needs to
be moved out of their home situation urgently
because of – for example – family issues.
Some 80 per cent of the patients served by the
hospice have cancer. The remaining patients have
other chronic conditions, including degenerative
neurological disorders like motor neurone disease,
Parkinson’s disease and dementia.
Hospice support is not restricted to those who
are thought to have only months or weeks to live.
Hospices provide holistic, palliative care for
patients and their families. There is no consensus Day hospice, hospice-at-home and specialist
community nurses support patients and families
on a precise definition, but ‘holistic’ is taken to
following diagnosis. The community Princess
mean an approach that treats the patient as a
whole person. Aspects of hospice care therefore Alice Nurses care for over 800 patients at any
one time, offering specialist care management,
include the control of symptoms and pain,
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symptom control, practical advice and emotional She emphasised the importance of treating the
patient as a whole person. She urged doctors
support, seven days a week.
to work in a team to support patients and their
families to the end of life and beyond, to bring
“We’re looking after living patients, so we
relief and provide support. She founded the first
want them to do more living,” says Dr Craig
modern hospice, St Christopher’s, in London in
Gannon, Deputy Medical Director at Princess
1967, where she died in 2005.
Alice Hospice.
In other words, hospices are more than places to die. “Cicely Saunders would thump the table about
listening to the patient and how keeping them
at the centre means you can’t go wrong,” says
If we stop listening to
Andrew Knight, Director of In-patient Services,
people, then we’re
Quality and Evaluation at Princess Alice Hospice,
doomed.”
“but we need to remember this. As we’ve
Andrew Knight,
grown up as a speciality we’ve become more
Director of In-patient Services,
Quality and Evaluation
professional; we sometimes forget to listen to
what the patient wants to tell us.”
“
Hospices in the UK care for 250 000 people
every year. Those helped by them have one
woman in particular to thank: Cicely Saunders,
founder of the modern hospice movement.
Saunders qualified as a nurse, then a medical
social worker and then a doctor. She worked
closely with patients suffering terminal illnesses
and built up a new philosophy around caring
for the dying.
She pioneered research into the use of opioids
to treat cancer pain, something that was not
widespread at the time, partly because of fears
of triggering addiction and euphoria in patients.
8/
Patients want and expect to give feedback, he says,
and to see that if they had comments, they could
get things changed. “We’ve introduced SKIPP – a
new patient outcome tool – to see how patients
are, how they were, has hospice made a difference?
People tell you things that are really humbling.”
From the first writing group, it was clear that
frustration plays a massive part in the lives of
people given terminal diagnoses. Frustration
at loved ones’ avoidance of conversations that
the patients want and need to have with them,
frustration at having to live with a failing body,
and frustration at the bureaucracy of medicine
– the appointment that clashes with a holiday,
travelling by public transport for over an hour for
a lung function test that takes just five minutes.
On top of this, the annoyances, obligations and
worries that drain energy from all of us are still
present. One woman has damp in her flat, which
her landlord is not attending to. Another worries
about her relationship with her estranged son.
Another has not seen her grandchildren since
before Christmas.
there’s something comforting about knowing
that if these things have to happen anywhere,
they will do so in a place that not only anticipates
them, but also exists – at least in part – precisely
because of them.
And while I may not have got to hear any X-rated
stories in the end, the candid and open spirit
of that woman’s response was typical of every
member of the group. No matter what was
happening to them, each person listened, wrote
and shared something with everyone else there.
I am humbled by the humour, energy and time
Sometimes it’s only when a person mentions
these people put into the hour we spent together
their decision to stop having chemo, or their
worries about whether to be buried or cremated, every week, especially when you realise that they
are living lives in which those things may be in
that you remember where you are.
very short supply.
“
Across the day room, there’s
a cluster of laughing. ‘What’s
the joke?’ someone asks. ‘Her
toe’s itching,’ says Margaret,
cocking her head in her
neighbour’s direction. We
look at her neighbour, who’s
nodding in an exasperated
way – her leg is amputated
below the knee.”
Chrissie Giles
Senior Editor, Wellcome Trust
The hospice didn’t feel like a sad place. Terrible,
traumatising, painful things happen there, but
9/
Post-its
Frustration comes up again and again – at
the failings of bodies to ‘work’ and to have
the energy to do what you want them to. The
The single words written on Post-its told their
pressure of having to behave in a particular way
own story.
for relatives. The lack of listening, respect and
Guncho spoke around her choice of word, talking response from people working in healthcare.
about regrets, the decisions she rues, the eternal
John has a degenerative neurological condition
struggle to avoid rose-tinting the past. Yvonne
and finds talking very difficult. He took the nurse
regrets the drinking that caused her disease.
Margaret was no-nonsense, saying she wouldn’t in the room with him and pointed at various bits
of equipment until she pieced the story together.
change anything.
He had had a fall in the week and now there were
discussions about whether he should be in a
Whatever we start with, it always comes back
wheelchair full-time.
to the illness. With clarity as keen as a razor,
Guncho sums it up: she knows that she isn’t
Others responded to John’s story – we’re all
accepting of her situation and she knows
on a decline, that’s where we’re all going,
that she can’t be. How can anyone not in that
situation understand? “Regrets are like the rain,” isn’t it? We’re all heading for the wheelchair
bit eventually.
she says. “Although we need some rain it is
always unwelcome when it comes.”
Someone comments on the better weather, yet
sunny and hot isn’t always a good thing, bringing
What smell would your chosen word be? What
swollen legs, worsening agoraphobia and
weather? What animal? The smell of human
reminding people of holidays past.
faeces, rotting things, a hurricane, a caged
animal, a fierce tiger.
Margaret tells me that she could have done
anything with her life – gone to university,
One woman picks the meerkat from the
insurance company adverts. She likens the recent whatever, but all she ever wanted to do was have
ad where he has to jump through a flaming hoop a family. She’s just met her newborn sixth greatgrandchild but can’t hold her yet because of the
on a motorbike to her attempts to keep her
chemo she’s been having.
family happy.
Frustration. Fall. Enough!
10/
“Should we warm up the same next time?”
I ask as we wrap up. No need, the group
replies. “There’s not enough time for that –
we just want to get on with it!”
11/
Good bad jokes
One of the nurses sat in with the group, revealing
in our ‘one thing about me that might surprise
people’ opener that she trained to be a baker.
The first writing exercise and Freddie*, an excabbie with a keen, dry sense of humour, began:
“I’m on a roll to become a baker”.
Freddie, the cockney ex-cabbie, wanted to
write a letter to his mum, who – he said – held
everyone together during the war. You didn’t
have friends then, he explained, because you
kept running away from one bomb, then another.
We were writing letters and Margaret was
thinking about how to start hers. “Well,” I
asked, “How do you address your son?”
“I don’t,” she replied, without missing a beat,
“He dresses himself”.
Talking about the best presents we’d ever got or
given, he began a story: “All cabbies love a bit of
bent gear.” He described giving his wife a top-ofthe-range food mixer that she rejected because
of her suspicions about where it came from.
Apparently, she’s still using it today.
Audrey, as ever, was bursting with things to say
– she was so keen that she’d already done the
subsequent stages of the letter-writing exercise
without any prompting. She wrote a letter to
her own “dear lonely heart” and read it out with
flashing eyes, the words rolling in her rich accent
from pinky-purple painted lips.
An ambulance siren went off in the distance.
Margaret said, “Oh, I don’t like that sound, go
away.” She tells us how she was waiting outside
the hospital for her taxi the other day. Being a
self-confessed chatterbox, she got talking to the
man next to her. Just then, a hearse pulled up in
front of them. “Is that mine or yours?” she asked.
She’s a compelling storyteller, often regaling us
with stories of her upbringing in South America.
In one session, she clasped her book to her
chest, proclaiming, “I get it all out into here. I
have written my life’s story!” In another, she told
us that she’d once lost a job for talking too much.
12/
*This name has been changed.
13/
Aldona
A memory of my mother
by Aldona
I was an only child and wasn’t really separated
[from my mother] until I was 13. I was evacuated
and I found it very, very traumatic. I was possibly
too close to my mother.
Aldona was on a break from day hospice for much
of my time there, but her sense of humour and
intelligence was obvious from our first meeting.
She has a very sensible, practical air and looks
younger than her age (over 80). She enthralled us
with stories of her life, travels and family.
This piece finishes with Aldona saying how her
imagination was affected by the war. When I
read this to the group, Aldona added that she did
begin writing a journal in her adolescence and
has enjoyed a lifelong love of reading and writing.
During my final week at the hospice, Aldona gave
She now finds it hard to read and write – a clear me four handwritten sheets of paper accounting
source of frustration for her. As we chatted about her experience of seeing the Himalayas for the
first time, written as a follow-up to the previous
which person she would like to think about for
an exercise in the writing group, the story below writing session. In sloping, black felt-tipped
letters, she concluded: “I have been lucky enough
started to form. I transcribed her speech and
to see them once more…and the impact was the
read it back to her. Aldona spoke with great
same – absolute joy and awe”.
fondness of her mother, recalling her beautiful
soprano voice, her red hair and even the perfume
she wore (Chypre by Coty).
14/
Evacuation was as hard for her as it was for me:
torn between trying to look after my father and
look after me. I suppose I spent the day crying
a lot. My mum didn’t get the opportunity to see
me very much until later. It was the first really
traumatic time of my life. The first real upset I’d
ever had.
She was a spinster, very kind. She looked after
us pretty well. We were not there very long, we
were moved on. I made such as fuss that I got
sent to some relatives. It was not much of an
improvement as I didn’t like it there either,
I was too much of a miserable kid.
That had a very – I realise now – bad effect on
my imagination. After then I couldn’t use my
imagination, it placed a block on it. I used to
make up stories etc. My imagination came
back again, but never to the same extent.
When the war first started, the weather was
very good – it was a hot summer. I was probably
wearing school clothes – navy blue, school
blazer. I had a small case with a few clothes in,
the usual thing.
Evacuation was a new experience and I was
very lucky as I was with a good friend of mine.
We were billeted to the local lady librarian. She
had a small private library, which was good as
we could read any books we liked. That was one
of the things I remember most – it made a big
impression. It was mainly fiction, I suppose, but if
it was printed, I’d read it.
15/
On the ward
I’d been asked to go to the ward to see one of the
patients. Here, people are given inpatient care,
either as respite for them and their carers or to
support them at the end of their life.
Jack’s* mum walked over next to me and put
a wide, shallow box on the bed. She opened it
and inside was a jumble of cards and envelopes:
pink princesses, glitter and hearts alongside the
navy, gold and khaki of football, beer and cars.
There was a card ready for each birthday of his
young son and daughter, all the way until their
twenty-firsts.
A breeze from the open patio door flapped the
floor-length net curtains. Objects were scattered
on the windowsill: a card from a friend, a pouch
of tobacco, an empty water bottle, an inhaler.
His head drops forwards and his breathing
becomes more pronounced. Is he just thinking?
Sobbing? Sleeping? “Jack?” He wakes up and we
pick up from the part we got to, but he nods off
again. Heavy inhalation, short exhalation and a
small wobble of the head.
A quiet knock on the door is followed by a louder
one. His daughter, son and partner are outside.
The little girl, who has a large gold foil medal
around her neck, asks politely if they can come
in. They walk through, see their sleeping dad and
bound onto the large lawn to kick a ball and do
handstands. I take the notebook and its 33 words
and leave.
*This name has been changed.
Jack sat in a wheelchair, his muscular arms
decorated with swirling tattoos. His red, swollen
legs showed below his shorts, weeping, fluidfilled feet and ankles wrapped in absorbent pads.
He started to dictate a letter. One line in, he
breaks to tell me about the recipient, a short
summary that explains how he wishes he’d have
more time with this person, who has come back
into his life relatively recently. He continues,
thinking about each line and how best to put
what he’s feeling.
16/
17/
Objects
Eileen, who has a degenerative neurological
condition, rolled the die around her palm. “I chose
it because it’s exciting,” she said. The driftwood
captured several people’s imaginations, prompting
one person to talk about their own life living
across the ocean in Ireland. Brian loved the box
I pulled an assortment of things from a carrier
and decided it was one of a set, yet this one was
bag and spread them along the length of the
table. There was a long, gold-coloured key, a small the special favourite.
wooden box painted in bright colours showing a
At the end, as we left the room, some of the group
chicken, a round paperweight containing dried
asked me where the box was from, but I couldn’t
flowers, a small piece of driftwood full of tiny
give them the answer – I can’t remember when I
holes and a red die.
got it, or where from. Their answers were better,
anyway.
Pick an object and describe it. What questions
would you ask it? What answers would you give?
Fourteen of us crammed into the room. The aircon
was fighting noisily against the clammy July air,
bodies arranged in a variety of chairs in a very
approximate circle.
*This name has been changed.
Freddie* didn’t pick an object but created a story
that incorporated them all – the box was opened
by the key, and inside sat another object, too big in
reality to fit. He’d made sense of all of the things
presented in a way he was comfortable with, even
if his logic wasn’t shared by everyone. Always
ready with a crack, Freddie stumbled as he read
his writing aloud and declared: “I’m a great writer,
but not a great reader.”
18/
19/
Rory
Claude made us laugh
by Rory
I didn’t meet Rory until fairly late into my time
at Princess Alice. It’s hard to miss his beaming
smile, shaved head and bright eyes. On meeting,
we shook hands and Rory tapped at the iPad he
was holding. A jaunty electronic voice explained
that he has a neurological condition and
communicates via a text-to-speech app.
Rory’s initial list evoked some strong images of his
late father – a man with a sharp sense of humour
who would go to football wearing a tie and whose
claim to fame was appearing on TV playing the
spoons. Rory tapped out the piece below and
shared it with the group, bringing smiles around
the circle.
In the group we were working on an exercise
about a relationship with someone we knew
well. We started by thinking of all the things
we associated with them: the smells, textures,
sounds, tastes, colours and objects. We then
thought of a specific event that involved them.
From that, we let ourselves write.
In response to this piece, he wrote: “I am quite
a basic person and describe things as they are
– nothing too deep – and that way quite a vivid
picture can be built up of how I see things. I think
I have captured the many attributes of a great
father, friend and mentor.”
He made us laugh,
He made us cry
Because we were laughing so much
We would have tears in our eyes
His treat was to go and watch football
His team was Ipswich Town
He wore a tie, not scarf,
The adverse results never got him down!
As a young chef in his early twenties
It was war, and he joined the Navy
As the bombs dropped on his ship, The Welshman,
He said, “Sod the bombs, just make the gravy!”
He passed away at 81
Having given laughter to many
He was very careful with money
But he would give you his last penny
He worked hard all his life,
A man, not born into wealth
His hard work was always hampered
By his continual bad health
Whilst his life was, at times, a struggle
He put on a brave face and could at times appear
quite daft
He gave to others the gift of humour
And his aim in life was to have a damn good laugh
High blood pressure, diabetes, ulcers and phlebitis
Irregular heartbeat, in-growing toenail and
rheumatoid arthritis
Swollen knees and ankles aching
And not to forget that awful bronchitis
Claude, we will never let the humour and
memories die!
He made light of his ailments
And tried to be merry
By making others laugh
In fact, so much, it hurt my belly!
He joined a small entertainment group
Supported ably by Lily, his wife
Then to our surprise he was nominated
To play the spoons on Esther Rantzen’s That’s Life!
He was a fantastic father
And husband as well
A blend of discipline, guidance and laughter,
How much pain he was in, we could never tell
20/
21/
Blowing hot and cold
Generally, when I arrived at the day hospice, lunch
was finished. Around the room, people in various
states of post-prandial relaxation would read,
chat or doze. I’d been visiting over the summer,
so sometimes the doors that line the back of the
room were open to let fresh air in, sometimes they
were shut to keep the torrential rain out.
Whatever the weather, though, you could
guarantee that some of the group would be
drinking cold drinks, bathing in the cool air of
a fan, while others would be huddled in thick
layers and hats, strategically positioned out
of the way of the draughts.
22/
Take the Margarets. One of them, more often than
not, would be zipped up in a brightly coloured
fleece, arms and legs fully covered. A few seats
down, the other would be in short sleeves,
reclined on her chair to feel the breeze on her face.
One particularly warm day, feels-the-heat
Margaret and her friend were sitting in their usual
places, heads back, feet up. A few inches from
their faces, they held battery-powered pocket fans
that were whizzing away. “Flipping heck, ladies,”
said one woman as she passed. “When I heard
that buzzing start, I thought you’d got something
else out of your handbags.”
23/
Life, death and an egg salad sandwich
It was a gorgeous day outside. In the corridor of
the ward I stood, back resting on the pale walls.
I was waiting for the nurse to come out of Jack’s
room so I could go in and start writing with him.
Across from me, the door of another room was
open. In the background, through the patio
doors, I could see people working in the hospice
gardens, strolling in the sun or sitting on benches,
sandwiches unwrapped on their laps.
On the bed was a man. An electric shock of
adrenaline shot through me in response to how
grey, ill and near to death he looked. Breathing
with loud, laboured inhalations, he was otherwise
still, eyes closed.
a lawnmower I heard them discussing anagrams
for the word ‘sulphur’. Further up the corridor,
towards reception, a young man with the same
face as the man on the bed was pacing up
and down.
Three weeks later I was in a similar room in a
different part of the country. Sat on a turquoise
chair with a spongy seat I was having a lowvolume argument with my husband about
whether I was going to eat half of the egg salad
sandwich I’d just bought from the hospital shop.
Between us, his dad lay: eyes closed, breathing
quietly, the day before he died.
With her back to me, a woman was sitting at his
side, head turned towards someone at the end of
the bed that I couldn’t see. She had a puzzle book
open across her lap. Above the distant drone of
24/
25/
Jackie
Untitled by Jackie
A huge hug is given, engulfed in love,
A family relationship.
My son,
The very light of my life.
Jackie and I arrived at Princess Alice at around
the same time. Softly spoken and thoughtful, she
brought a sensitivity and calmness to the writing
group. Her stories outlined the importance of the
countryside and, in particular, horses in her life.
She didn’t like to be upset and tried hard to
suppress any negative emotions she felt. In the
Post-its exercise, where we each wrote down a
word that we felt had been particularly pertinent
to us over the last week, she was the only person
to give two words: one she perceived as negative,
and a positive one to balance. The positive word
was ‘foal’, reflecting a new arrival in her family.
She said being part of the group had helped give
her a bit of confidence about writing. “My head’s
such a muddle,” she said. “This showed me that
I can still get my thoughts down on paper.”
This piece is about her son. When she read it to
the group – tearfully – many of us found ourselves
welling up too. Jackie said that her family loved
the poem, especially her mother, who read it
aloud to everyone.
Warm, familiar laugh that warms me through and through
Eddie Murphy’s double.
Country odours, animals and leather,
All is soft, natural browns, warm woolly jumpers
Mixed with stubbly cuddles from a hurried shave.
Never enough time.
Mobile phone – never stops!
No trouble, catch up with you later, sounds good to me.
Always on the go.
Craggy, weathered smile.
Works so hard, my boy.
You ready mum? Car’s outside
What first?
Bedding, duvet and pillows for car journey? Any.
Separate ones for the van?
Case?
Medication, water.
Wait til you see your garden,
Shrubs, trees are in bud waiting for you.
All’s good.
Weather’s on the up.
26/
27/
The easy tree
I’d been going to the hospice for a couple of
weeks and hadn’t yet met Brian, but I noticed him
straight away this particular Tuesday. An older
man, he reminded me of the granddad I knew
only when I was a child. He has a wide smile and
twinkling eyes and was resplendent in a patterned
Hawaiian-style shirt, evidently one of several such
items in his wardrobe.
Discussing what we might put in a ‘museum
of me’, Brian told us about the ‘easy tree’. “The
whole gang used to go up there,” Brian said,
describing a hawthorn tree that was so loved, the
spikes were soon worn away, rendering the tree
smooth and no longer painful to climb. Its name
came from the fact that it was so easy to climb,
even girls could do it.
Everyone that saw him greeted him with affection,
chatting excitedly, catching up on his news. In the
writing group, he came up with some fascinating
tales from his childhood, including the time his
dad went what he described as ‘rootling’ on
holiday in Great Yarmouth. Scouring the rocks on
the sea edge, he found an iron BC coin – you could
still make out the head on one of its faces. Brian
still has it today.
We asked whether the tree was still there,
imagining Brian erecting a plaque next to it.
“No,” he said, shaking his head. For a reason he
still can’t work out, he and his friends got together
when they were around 15 and destroyed it.
28/
29/
A little less conversation
One week I was circling the day hospice,
corralling the writers into our room. In the corner,
Jo was cocooned in a large chair that gave the
appearance of almost swallowing her up. Puffy
faced, she opened her eyes. Her left check was
swollen with a dark, woolly-edged bruise. She
spoke slowly and a little slurred, telling me she’s
had a fall and is going to stay in the main room
and rest today.
The day hospice has a fluid population – any
given week, people could be absent because
they’re on a break from day hospice, too ill to
visit, on holiday or at a medical appointment.
Even so, the week after, when I didn’t see Jo,
I panicked a little. After the group, though, as
people found their drivers and made their way
out of the day hospice, I saw her in a wheelchair.
I knelt down to say hi, noticing as I bent the
white plastic wristband around her arm.
One of the nicest but potentially derailing
aspects of the writing group was our love of
chat. Towards the end of the course, I asked the
writers to reflect on how the sessions had been.
With characteristic insight, Guncho wrote: “the
more we are asked to write, the more we want
to speak. It’s like we are starved of company –
myself included”.
Jo loves to chat. She’s someone who is as
interested in you and what’s happening in your
30/
life, as she is in herself. One week, talking about
the book her son has published, she breaks the
conversation to ask if I have a new kitten, noting
the scratches on my hand (inflicted, in fact, by
a cat old enough to know better). In the group,
she smiles as she writes, remembering the
past. As she reads out her words, she paints
great tales of the sixties, especially the fabulous
clothing and shoes that she couldn’t even think
about wearing nowadays.
often in brightly coloured suits. Even though one
foot is bandaged, she wears a matching highheeled shoe on the other. On our first meeting,
the rest of the group dared me to guess her age.
I was at least 20 years under the correct number
and refuse, still, to believe she is in her 80s.
Jo’s friends from day hospice were delighted to
see her, departing with heartfelt orders for her
to take care and be well. On the way out, Rose
passed behind the wheelchair and said goodbye.
As Jo replied, cocking her head back, Rose
cupped Jo’s face in her hands, kissed her on
the forehead and left.
Her cheek was still dark grey and now (she
reached up to take off her glasses) there were
two black eyes to go with it. She tells me that she
fell out of bed and has been in the hospice as a
patient since last week. “I’d rather be here than
at home, though,” she whispered conspiratorially.
“Do you they treat you well then?” I asked. “Ooh
yes,” she smiled.
Rose is a statuesque, elegant, white-haired
woman. She is always immaculately dressed,
31/
“
Across the day room, there’s a cluster of
laughing. ‘What’s the joke?’ someone asks.
‘Her toe’s itching,’ says Margaret, cocking her
head in her neighbour’s direction. We look at her
neighbour, who’s nodding in an exasperated way
– her leg is amputated below the knee.”
Inspired by a creative writing group at Princess Alice Hospice, Esher,
‘Stories from the day hospice’ originally appeared as a blog series to
accompany Death: A self-portrait. By popular demand we have published
these moving and uplifting stories in a thoughtfully illustrated booklet.
Publishing at Wellcome Collection
wellcomecollection.org
The free destination for the incurably curious
Wellcome Collection is part of the Wellcome Trust. The Wellcome Trust is a charity registered in England and Wales, no. 210183. Its sole trustee is The Wellcome Trust Limited,
a company registered in England and Wales, no. 2711000 (whose registered office is at 215 Euston Road, London NW1 2BE, UK). MP-5420.51/02-2013/7K/MD