Patience

“Having a baby and having cancer are two such massive things in your life” … and Emily has had to deal with both of these life-changing experiences at once.


Johana Hartwig interviews Emily Underwood-Lee about her story.

X-Ray image from the flyer for Patience

by Johana Hartwig

Emily Underwood-Lee is one strong lady. Diagnosed with cancer when she was pregnant, she has continued to work as performer, Research Assistant and PhD student at the George Ewart Evans Centre for Storytelling, University of Glamorgan. She is mum to daughter Lillian, now 18 months old.

The diagnosis

Emily first discovered that she had cancer when she was 18 weeks pregnant: “I thought that it was a problem with my milk ducts, the lump in my breasts, I thought that I was getting mastitis or something pregnancy related, but it turned out that it was a tumor that had revealed itself because of the pregnancy. It had pushed itself to the surface, making it obvious.”

I ask if the cancer was discovered because Emily was pregnant.

“I wouldn’t have found it so quickly otherwise. From what people tell me, you have a tumor for an average of seven years before you find it, because they start so tiny. Pregnancy accelerates the growth as well, so if you’ve got all the hormonal changes it makes them grow quicker.”

Emily Underwood-Lee looks very well, her tone is upbeat, she is candid and friendly and I warm to her instantly. There is little hint of what she has gone through or indication that she is still ill. I ask her if the cancer is in remission.

“You don’t go into remission with the type of tumor I have. Basically the longer you live, the better the odds are that it’s not going to come back, but they never have a guarantee. They can never say it’s gone, but at the moment they can’t see anything.

“It affects me massively still. It changes everything about you and the way you relate to the world.

“There are also physical side effects from the treatment. I am still going through fatigue and I still have a lower resistance to infection and I’m still going to have to have more surgery.”

Lillian

Emily takes Lillian to all her hospital appointments. Emily explains: "She’s seen all my scars. She’s kind of interested in what the medics do. She’s always getting in there with the needles. It’s really hard to keep her away from the bandages and everything; she wants to poke about and have a look.

“I will always have six monthly checks at the hospital, so that’ll always be part of her life as well.

“It’s a genetic cancer so she is going to have to be aware. Odds are that she’s got the same gene. So I want to always be very open with her.

“But the emotional stuff I’ve been writing to her… I’ve written a journal for her and I will keep that for her until she asks or until I think she’s old enough to take it all on board. Because it’s quite hard I suppose, I don’t want to burden her with all that stuff.”

Research work

Emily’s background is performance art, rather than traditional storytelling. Her PhD looks at feminist performance art and autobiography. "I’ve always been interested in the performative elements of storytelling and particularly interested in autobiography and how we create stories in our lives.

“I’ve been doing some work in Velindre Hospital. It’s really strange going back and talking to staff not as a patient but as a practitioner. I have been looking at how narrative can be used in health care. I suppose what’s interesting for me is that for me personally it’s re-empowered me, because when you have this diagnosis, I guess it’s the same as being pregnant; you think you can make all these decisions, but actually in the end you have to do what the doctors tell you.

In order to write about my experience , I’m making it fiction so it’s completely under my control and I get to decide what happens,how and in what order, and what the outcome is."

Patience

For the last 6 months, Emily has been creating Patience, an audio-visual performance based on her experiences and research.

Emily describes Patience: "It is entirely autobiographical, but some of it is based on my imaginings or my fantasies or my hopes. I wouldn’t call it fiction, but it is fictionalised.

“It’s vocal, it’s words, but I found as I was rehearsing I couldn’t speak them, so I’m performing silently with a recorded soundtrack over it and there’s film footage of a lot of my medical procedures. The hospital has been amazing at giving me all my scans and my mammograms and there’s footage of Lillian cut in there. I hope when she’s bigger that she will physically be in the performance, but at the moment I can’t rely on that because she might fall asleep or run away.”

Emily will perform ‘Patience’ live at the Atrium, Cardiff, on the 21st of October 2009.

Tour dates

Patience is touring Britain and will appear at:

Tour dates to be confirmed – for more details, contact the George Ewart Evans Centre for Storytelling

Patience<br />
by Emily Underwood-Lee I grew some lumps, I grew some lumps, I grew some lumps.<br />
One was a baby, two were something more sinister. A short meditation on cancer and maternity. Wednesday 21st October 2009, 1pm, Cardiff School of Creative and Cultural Industries, Adam St, Cardiff

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