Health

How breast cancer survivors heal the psychological scars

5 May 2016

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Recovering from breast cancer can be overwhelming and many people need help to heal the psychological scars. Now, charity Breast Cancer Care has launched Moving Forward, a series of free courses in a number of NHS hospitals, giving patients the chance to ask specialist questions, find out more about treatment side effects and meet people who are going through the same experiences. Because, as US comedian Tig Notaro found after her double mastectomy when she took to the mic of the Largo comedy club and said, 'Hello, how are you? I have cancer," talking and sharing experiences has the power to reassure, inspire, make you feel less isolated and help you move on. Here she tells her story…

"It seemed like a cruel joke"

When I was first diagnosed with breast cancer, my initial reaction was to keep it a secret. I was fearful I'd never work again, date again, that I'd be considered damaged goods. At first, breast cancer wasn't funny at all.

I noticed a lump in my breast in 2011, a year

before I was diagnosed. I know this is so naïve, but because my

breasts were so small, I thought there was no way I could have

breast cancer, especially since I was young, didn't smoke, and

didn't have breast cancer in my family. But after a mammogram, my

doctor started talking to me in a concerned tone. Based on the

tests they'd done so far, she said it was "probable" I had cancer.

I got very quiet. "Do you have any questions?" she asked. I told

her I didn't. I just wanted to leave. I went home, got in bed, and

cried.

A few days later, I had a biopsy, which was

basically like an ice pick stabbing me over and over. This

confirmed I had stage two cancer. Doctors said a double mastectomy

was my only option. I was stunned. I kept thinking that maybe I'd

meet a doctor who'd say it wasn't necessary, but every doctor I

spoke to said it was. At that point, I was referred to several

reconstructive surgeons, as it was just assumed that I'd want

reconstructive surgery. Then one day it hit me that I didn't think

I wanted that. Reconstructive surgery, I'd heard, would make for a

longer and more painful recovery. Given I didn't have a huge chest

to begin with, it seemed like so much trouble to go through. And I

just don't identify with having fake boobs. I figured I'd feel more

natural with scars.

"A very different body"

On September 4, 2012, I went to the hospital.

I was scared and nervous: I knew I was going to be coming out of

surgery with a very different body. Afterwards, I was wheeled into

a gigantic suite filled with 20 of my friends, many of them

comedians. Megan Mullally, Natasha Leggero and Missi Pyle stopped

by. It was not a mellow scene. I asked them to do some jokes, so

they did some sets. A couple of actresses sang to me. When another

friend burst in late rattling off a list of excuses - busy day,

traffic - I turned to her, all drugged, and said, "You know I

just got my tits ripped off, right?"

After surgery, I was put on hormone-blocking

treatments, which will last for five years. Chemo was suggested,

but I refused, since it might affect the possibility of having kids

some day. At first, I couldn't bear to look under the bandages at

my body. I held off for two and a half weeks for the bruising and

swelling to go down, because I thought it would be too much. But

even then, I asked a friend to look at my chest first. She looked

and said, "You'll be able to do this." And I did. I was OK with it.

Whenever I said anything negative about myself, my friend Sarah

Silverman's favourite thing to say was, "Don't talk about my friend

like that." I think that's a great way to think when you talk badly

about yourself. Instead, I tell myself, "You're doing a good job.

You're doing your best."

**"I accidentally went

public"**

Before all this, I was a much more private

person. But breast cancer was something I just felt I didn't want

to be private about. Why? I don't know. Maybe it was because at the

time of my diagnosis, I was on the tail end of all the hell I'd

been going through. I'd sat next to my mother gasping for breath

for 12 hours before she died, having tripped and hit her head. I'd

lost 20lb due to a bacteria infection eating my intestines. My

girlfriend and I had just broken up. So to be told, "You have

cancer," it was like, "Enough already." Although I'd initially

wanted to tell no one, suddenly I snapped. The next time I got on

stage could possibly be my last.

And so a week after my diagnosis, I stepped up

to the mic at the Largo comedy club in West Hollywood and said,

"Hello, how are you? I have cancer." At first I was nervous, and

couldn't imagine how people would respond, and there were certainly

awkward moments. But once I got going, I realised that the audience

was on my side. I jokingly referred to my double mastectomy as my

"forced transition" to becoming a man. I contemplated whether I'd

ever date again and the idea of posting an online profile saying,

"I have cancer: Serious inquiries only." And how I hated how nobody

would casually talk about their day - as in, "I had a rotten day…

oh, never mind. It's not cancer." Comedian Louis C.K. said it was

one of the best stand-up performances he'd ever seen, aside from

Bill Cosby.

The next day, Louis called me and suggested I

release it as a stand-up album. I laughed. It was not a tightly

honed performance; it was as raw as an open mic - just me talking

out loud on a wing and a prayer. Yet a month and a half later, I

called him and said I'd reconsidered, thinking how I could possibly

help people. Within six weeks, the album Tig Notaro Live sold over 100,000 copies. It

taught me that taking that leap to expose yourself is what people

connect to, that there are certain important things that stare you

in the face that need to be said.

Recently a friend of mine joked, "To get more

attention, what are you going to do next, get AIDS?" But things

have actually been going well in my life. Doctors say my prognosis

is great, that I have only a 7% chance of recurrence.

**"I wasn't insecure, I was

empowered"**

Seeing how much my openness has helped people

has been amazing. People write to me all the time - people who've

been diagnosed with cancer, people who have lost loved ones, people

who are weeks away from dying - saying that my story inspired them,

made them feel like they can do this now. It reminds me how lucky I

am to have friends and family, and work, and health insurance, and

a sense of humour. I always marvel over how people get through

things like this who aren't comedians. My sense of humour is this

extra voice in my head, talking to me, pushing me ideas on how to

get through this.

Before breast cancer, I didn't think too much

about my body or my chest. I cracked jokes about my breasts being

small, but I wasn't insecure about them. After my double mastectomy

I thought I would miss them, that I'd feel sad every time I looked

at my body. Instead, I feel empowered, confident, attractive. I

feel like everything I've gone through makes me more attractive,

because the decisions I made were my decisions - I didn't just do

what was placed before me. Before breast cancer, I don't think I

respected myself as much as I do now. Now I think, 'Huh, you're

pretty cool.' @TigNotaro

To find out more about Breast Cancer Care's Moving Foward courses, visit breastcancercare.org.uk.