Di met Emma, who she’d never seen, in the foyer of the Wellcome Gallery on Euston Road. She identified her immediately because she belonged in some way to the set of Emmas – real life and fictional – with which Di was familiar. The title of the poem is how Emma described her life-journey to date (verbatim). The telescoping of the personal and the mythic, the mundane and the fairytale is a thread that runs through the poem. The giant pink O design on her jumper instantly suggested Alice in Wonderland’s rabbit hole. She seemed sprung from the pages of Arthur Rackham, a celebrated Victorian book illustrator whose works include illustrations to European fairy tales and folklore, and her description of home life on the narrowboat was gothic – ‘schauerlich’, meaning gruesome or blood curdling, is a recurring adjective in German Gothic literature (ETA Hoffmann, Brothers Grimm). The ‘O’ that recurs through the poem is also performative – referring variously to sounds made in conversation – as in the oh! of surprise, the oh no! of dismay or the oh of recognition.
In the UK, the National Institute for Health and Care Excellence (NICE) assesses new drugs and treatments to decide whether they represent good value for the NHS and improved outcomes for patients. But patients may receive unlicensed treatments in research studies, as Emma reports. A separate Cancer Drugs Fund established by Prime Minister David Cameron in 2010 was discontinued after unfavourable review but, in 2016, NICE took on elements of its role by allowing interim use of treatments prior to licensing and full review. Overall, 64% of NICE recommendations since 2000 stated that the NHS should use the new cancer drugs that NICE had assessed. Initial cancer treatments are ‘first line’ and, if they stop working or have significant side effects, your options for ‘second line’ treatment in the NHS and in research studies will depend on the treatment you have already had as well as other factors.
Bluebird
in the dog rose
inked on skin
jacket of coral
rucksack
Beanstalk green
boots brown as paths
through summer woods
or muddy beelines
on the allotment.
People are rarely
how you imagine them.
She is.
“Emmas are Emmas,”
she laughs.
This Emma
has a Masters in Fine Art.
Disenchanted
with the insider narratives
of the art world
she takes a job in an electronics lab.
Soon she’s running it from scratch.
“I’m quite quick,”
she grins.
The mobile features morph
like clay on a potter’s wheel.
A steal of something French –
though she’s a Londoner
growing up in Devon –
a flash of Louise Brooks,
a swirl of Arthur Rackham.
Rose madder
O
pulses on grey jumper
pulls the listening I
down the rabbit hole
into her story.
First
Fragment.
Trading land
for water
she suggests “a moving house”
to accommodate
the wandering spirit of her husband –
a trained violinist
who resists
the lunatic fiddling of devils,
the harmonics of poets,
to gig with the band.
Inside the boat
space is tight.
Spiders in the bed,
earwigs in the wooden spoons
schauerlich
but a successful year on the road
will mean they can upsize.
O
She discovers a lump
in her right breast,
has “a full dance card of cancer treatments.”
While it goes swimmingly with the band
she pukes her guts up on the sofa.
Mum and sister
fish her off the boat
land her in a flat in Peckham
where Mum can stay.
Younger sister
who she says
“wants to be older than me”
exerts an authority she does not have.
Second
Fragment.
Two years later
a 70 foot narrowboat
is home.
O
“A hat-trick of mets” –
liver, lungs and bones –
she’s hobbling around like an old lady.
But she’s taking her meds, making it work,
“one foot in front of the other.”
She shrugs off the memory
like a scratchy sweater
or an old skin,
says cancer is one more curve ball
Life’s thrown her way.
As we speak
the pink pen wefts
scraps of conversation to the page,
ruffles and arrowheads.
She mines words,
understands performance,
has “loads of sketchbooks.”
She’s worked for The Arts Council,
The British Council,
The Whitechapel Gallery,
The Poetry Cafe.
But in the holograph she calls
herself
she sees a crazy cartoon character
swerving this way and that
knocked off her bike.
She is
however
resilient
as the girl
in the fairy tale,
indefatigable
as the child
in the ring o’ roses.
Third
Fragment.
She hasn’t worked since 2016.
Before then
jobs went wide of the mark
or never found purchase.
But in not working it seems
she’s now on target.
O
Metastatic cancer is deemed
treatable not curable.
Access to drugs is critical.
She badgers her oncologist for a drug
available in the US
but not here,
gets put on a trial.
After
she campaigns for Pfizer
to drop its price, make the medication available.
Success.
But not entirely.
The drug’s approved as a first line therapy only
which means
at the time she was diagnosed
she wouldn’t have been able to take it.
She talks at The Crick:
How I hadn’t been cured
and why that might have been.
Barriers to cancer care,
accessibility of data outcomes,
she weighs in.
The arrows are starting to prick
the body politic,
bringing, she says,
a sense of ownership.
Near their mooring
they keep seven chickens in a run.
The chickens are not free
to do as they please
because there’s a fox
who lives next to the door of the run.
In this Morality Tale
she is the Fox –
a philosophical one.
The protected Pharma-fowl
gobble up the returns
but she’s unwilling to demonise,
reasons
“It’s human nature to take a bit more.”
As if sprung from the pages
of the fairy tales that fascinate,
she can knit, embroider,
whittle spoons out of wood.
I picture her
in the heart of the Forest
Red Riding Hood
busy with her to-do list,
Grandmother
rewinding the curve balls,
The Woodcutter
whittling the block to her will.
The Story continues.
