Tag Archives: Surgery

Cancer as a battleground

I listened to a really interesting podcast of Radio National Australia 360 Documentaries entitled Cancer as a Battleground http://www.abc.net.au/radionational/programs/360/cancer-as-a-battleground/4156650

In the developed western world the dominant discourse of cancer is as a battleground. This was really started in US in 1971 with the appropriation of $100 mill to launch a war against cancer. There was a belief that cancer, a major burden of disease, could be defeated in much the same was as other major diseases like smallpox, polio etc. It only needed enough money to find the magic cure. So the war on cancer, like the war on drugs and the war on terrorism became an easy slogan to garner our attention and justify large amounts of public funds to create a voracious research machine.

The weapons of war, chemicals, radiation and biological are deployed against the bad cancerous cells inside our body. The focus is on ridding the body of these alien cells and thereby allowing the diseased person to survive.  Treatment is constructed as a battle of good versus evil with all the power of the artillery available to the modern medical system waged against this evil.

In this podcast it is pointed out that we don’t question the war on cancer as we question other wars and without this debate we are caught in an earlier more naïve view of war like World War 2; one which is seen as goodies versus baddies and can be won with the baddies being defeated.

“ We start to run, swim, bake, grow moustaches, wear pink, have afternoon teas etc to fight the war – like nationalist buying war bonds during war.”

We love war stories and admire war heroes. In the battle against cancer there is a whole machinery for the construction of suitable heroes. We particularly look to celebrities. The breast cancer industry has constructed a number of celebrity heroes such as Melissa Etherington, Farrah Fawcett and in Australia we have

Kylie Minogue, Olivia Newton John, Jane McGrath and Belinda Emmet. The thing that all these women have in common is that they are beautiful, blonde, famous and rich and all present a pretty, polite, packaged face of breast cancer.  In Britain Jane Gooding – Big Brother contestant went from being regarded as a loud mouthed racist bigot to a hero when she was diagnosed with cancer. Women living with breast cancer feel they can’t possible live up to these heroes, who make it public that you are not doing it right.

We like to hear about heroism but we don’t want to talk about defeat. The medical profession often finds it very difficult to talk about death. “Our doctor told us that Angela would be off the trial. I asked him what I should do now. He said well you should make an appointment in 4 weeks time but don’t make it yet, what do I do in the meantime well you should get your wife’s affairs in order.  Then it hit me he was trying to tell me that my wife was going to die. All this code I think why cant he just talk to me honestly one adult to another”

We create a hierarchy of heroes, with some types of cancer more sympathetic.

“Surrounded by breast cancer sea of pink, my aunt with lung cancer was envious of support, she felt guilty as people assume she smoked and therefore brought her own cancer on.”

Talk of battle turns inwards into the minds and bodies of patients. Patients go to all ends to win this war. Similar spirit of ANZAC, spirit of patriotism, brings people together to construct hope.Pick a fight with you cancer – game on – patients speak of their bodies as the enemy to be battled.

“Being positive can cause trouble because people can feel that if they are not perpetually positive then they are letting themselves, their families, their doctors down.”

“Language of battle makes it hard to accept defeat.”

“We talked about everything except that she would die. When she died she had a pile of books titled you can beat cancer next to her bed”

“Her battle meant that I could never say goodbye.”

We seem less prepared for death than ever. If we don’t battle what is left is just the uncertainty of death and is that too terrible to face.

There is also an additional narrative that people cause their own cancer by they way they live their life, they have drunk too much alcohol, smoked, not exercised enough or else as Louisa Hay has argued not managed their emotions properly; they have repressed their anger, been too stressed or anxious.

This simplistic, black and white view of cancer is imposed on all people with cancer. As a woman with breast cancer I found myself feeling guilty that I had caused my cancer, which left me feeling powerless and lacking confidence in my own body. In this frame of mind I had limited confidence to challenge the onslaught of the medical system as it deployed its weaponry against my body.

I have found that by engaging with my body through the use of a fusion of creative arts, movement, painting, poetry, and photography, I have been able to reconnect with the power and wisdom held within my body and my intuitive right brain. I have been able to tap into the many complex layers of my female body, which has assisted me to accept my cancer, to make sense of the cancer treatment, to accept my changed body and to live my life as I want to live. I have been liberated from the battleground.

Using creative arts I have been able to explore the messy, confusing side of cancer. The simplistic battleground narrative does not allow space for questioning motives, strategies or indecision. There is no time for delay and the pressure is placed upon you to jump on the medical conveyor belt and not get off until you are cured. To be cured of breast cancer means to look like you used to so the aesthetic decision of whether to have breast reconstruction is included in the treatment.

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Well of Despair

I realise that this black hole of grief reminds me of my experience of depression. When in a very depressed state I had such a strong visual image of being stuck a couple of 100 metres below ground in this deep well not being able to reach the pin prick of light above me.

The Black Well of Despair

Stuck up to my chin in black oozing mud
Just enough clearance to breathe
The rancid stench of decay fills my nostrils
The taste of death in my mouth.

Raising my eyes
I can just see the pin prick of light far above me
I am deep down, deep down
Stuck in this deep well of despair.

One day I know
I will have the strength to climb out
To make the tortuous journey back up
Back up towards the light and rejoin the living

But for now I am stuck
Stuck here
In this deep black well of despair

Kay Gravell
April 2012

 I was talking to a friend about this experience of feeling like I am in a deep well of despair and she commented that she immediately thought of the sacred well. As in Greek mythology wells contain sacred water and are the source of spiritual rejuvenation.

Black hole of grief

I took this image of my painted body soon after I had had my mastectomy This close up image of my chest wall painted black is a grim reminder of my missing breast. I have carried this image around with me for the last few years . It has been a strong symbol of my grief.

The black space

I peer into the white rimmed
black space.
Where my left breast used to be
now looks empty
Bottomless
Black.

My rounded breast
punctuated by a nipple
dripping in red paint
proudly adorns my right chest.

It has such beautiful symmetry
sensual shape
just the right size
to be gently cupped by a hand.

The concaved black emptiness
stares out at me
like an unblinking eye.

A large black pupil
holding hidden depths
of unknown meaning.

Kay Gravell
29th April 2010

 

Trace of my life

Small  story books

An exercise I did with the group of women who had had a mastectomy was making small story books. Firstly you cut an A4 piece of paper into thirds and give each person one of these long narrow pieces of paper. They are invited to create a concertina folded book by folding their paper in half, then half again and so on until there is a concertina with 8 folded squares. They are then invited to paint their paper on both sides with a water colour wash using an abstract pattern; this will form the background to their story. Once this is completed each person writes for 10-15 minutes completing the following statements by writing in free association:

I am …………..

I want …………….

I need ……………

After 15 minutes each person sits with their writing and chooses one phrase, which they write on the front and back folds of their story book. Then they just complete the story writing a word/phrase/sentence in each folded section. When they get to the end of one side they turn the page over and there will be the starting phrase again and complete this side. Once the story books are completed each person takes it in turns to read their story out.

The one I completed is shown below:

I was scared
I thought I was going to die
but facing death
wasn’t so scary
just a slipping
into the light
leaving a faint trace
of my life behind.

I was scared
Then I found
real peace
knowing I had
lived my life to the full
with no regrets.
Can I hold this wisdom?
I
was scared. 

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When I read it out the other women gave me their responses

Slipping into the light banana

No need to remember how just making traces

Scared but accepting

Uncertain of your hold on life

This again brought out the theme of the silver lining i.e. that through facing death I had found a sense of calm that has eluded me all my life. I just need to remember this and hold onto it. One woman asked me why I thought I was going to die. Had I read all the literature that would have told me I had low probability of dying. I said no I hadn’t felt drawn to read lots of stuff but I was scared of dying as I was having my fourth general anesthetic in as many months. I want to be present at my death. I find the idea of dying on the operating theatre under general anesthetic really scary.

This activity got me thinking about leaving a trace of my life behind. This was a powerful idea for me. I had always wanted to leave a something big behind, some sort of legacy; to know that I had made some sort of difference to the world in some way; maybe a novel that would live on after me etc. It was a relief to know that I could feel at peace knowing I had left just a light trace of my life behind.

Night Before My Mastectomy


It is the night before my mastectomy. I go for a walk along the beach. I have walked along this beach so many times. This will be my last walk with both my breasts. I train my consciousness into my left breast. My breast is sore. I have already had two pieces of my breast removed. I try and feel into my breast. Can I detect the cancerous cells? I don’t know. Maybe it does feel different. But I feel perfectly healthy. It seems so bizarre that I can feel so sick when I’m suffering from a common cold but when I have the life threatening disease of cancer I feel perfectly fine.

I am scared about my surgery tomorrow. It will be my fourth operation under general anaesthetic in two months! I hate having general anaesthetics! Having my life go past without having any conscious experience of it freaks me out. The thought of dying under anaesthetic scares me. I want to be present at my death; to be able to welcome the moment of leaving this life. I am scared I will die tomorrow.

As I walk along the beach I think of all the amazing support I have received from so many people over the last two months. My breast, or the cancer in my breast, is giving me such a precious gift. I have had so many people call and visit me and wish me well. I feel so loved. I feel happy, content and at peace. I no longer feel driven to construct my life. I now know that my life is here. Perhaps for the first time in my life I am truly satisfied with who I am, with my life as it is.

“The essence of it is to let yourself see how much clinging to how you want your life to be is nothing more than a process of self-torture. Drop it, and allow yourself to fall openly and unguardedly in love with your life as it is and everything in it” (Santorelli, 1999, p. 182).

I have an incredible feeling of peace wash over me. I realise I am ready to die. I would leave this life without any regrets. I have lived my life to the full and to the best of my ability. Although I would like to live longer to continue to experience the amazing miracle of human life, I am reconciled to the fact that I might die tomorrow.

I have the humorous thought that I guess that’s one way of dealing with all my concerns about getting old. Maybe this has happened to me to allow me to see the beauty in growing old, to truly realise what is important in my life. I now know what is important in my life. It is about relationships with people. To feel connected to others.

I have a sudden realisation I have been doing this all my life. I have actually been tending to the most important aspect of my life all along. I have given myself such a hard time for not achieving more, contributing more to the state of the world. I now realise I have made a contribution to the world, at least in a small part of my world.  I am reminded of the poem I wrote just before I was diagnosed with cancer, in fact it was the day before my annual breast screen in which the cancerous lesion was detected. The last two stanzas now seem eerily prescient.

At times I feel shriveled by my fear!
What are my fears?
Fear that I will waste  this precious gift of life.
That I will not be worthy
of being allowed to live
while others have died young.

My sister Ann who died at 35 years of age.
I’ve had an extra 20 years of life
What have I done with this?
Have I made good use of this time?

YES I can now truthfully respond. I have made good use of my life. I have not wasted this precious gift of my life. As I walk along the beach the night before my mastectomy. Not knowing whether I will survive the operation to walk along this beach again. I have a moment of insight.

Beauty is in my connection to myself and to others

After my first surgery – need to go in again.

A week after my surgery I visit my surgeon to get my pathology results. I’m confident everything will be okay. My surgeon blasts through my confident exterior when she says I’ll need more surgery. I don’t have clear margins. She’ll need to take a bit more. She draws me another diagram illustrating how she’ll just need to take a slightly larger incision.

Nipple Painting

The night before I go into hospital to have my nipple cut off I make a series of paintings. I cover my nipple with paint and then use it like a brush.

 

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Nipple Painting

Tomorrow my nipple is being cut off.
The perfect symmetry it provides my breast
will be replaced with a scar.

My nipple, a site of such strong sensation.
In response to emotion, sexual arousal, touch, temperature
it magically changes shape, colour, texture.
A barometer of my inner and outer world.

A constant reminder of my womanhood.
As I move forward
my nipples are the extremity of  my phuysical boundary
like a cat’s whiskers
they are a radar
sensing the atmosphere ahead of me.

How do I celebrate my nipple?
Commemorate it?
Connect with the emotion of its loss?

I have a desire
to somehow retain its character
to allow it to make its mark,
to feel its physicality.

Like a paint brush
I move my paint somothered nipple
across the paper
making a series of abstract marks.

I immerse myself in nipple painting.
My nipples become tender
the abrasive movement across the paper
becomes more painful.

I paint slashes of red.
The pain shooting through my nipple
feels like a knife cut.

Kay Gravell
12th November 2008

Treatment

 

I was advised by my surgeon that to avoid the cancer spreading further I would need to have the cancerous cells removed unfortunately this meant the removal of my nipple. My surgeon described how she would delicately slice my nipple off removing the cancerous cells located behind it. She draws me a very neat diagram showing that she’ll just remove my nipple and a small area of tissue behind it.

.

It sounded so neat and insignificant but it didn’t feel insignificant!

Ode to my nipple

I am going to have my nipple cut off!
My nipple that nourished my three beautiful children.
The sight of my newborn baby latching onto my nipple
blissed out as the milk flows.
This incredible miracle of sustaining life
enacted through my nipple.

I am going to have my nipple cut off!
My nipple that has brought me so much sensual pleasure.
Waves of delight coursing through my body
with my lover’s touch.

I am going to have my nipple cut off!
I’ll feel unbalanced.
My left nipple that has already  survived two operations

The first when I was 20 and working at the Anti Cancer Council one summer
entering data on cancer survival rates.
I found a lump.
It was benign.
I wouldn’t be entered into the research data.

The second operation five years ago.
We’ve discovered hypophasic cells in your breast ducts.
We’ll have to go in again.
We probably won’t be able to save your nipple
said the grey haired surgeon
with all the sensitivity
as if he was discussing the loss of my toenail.

Booked in for surgery before Christmas.
My nipple was saved
by someone whose need was more urgent.
Perhaps I don’t have to do this?

 I went to the Mercy Breast Clinic.
What a difference!
From the crowded bus shelter environment of the public system.
This was like an upmarket hotel.
Beautifully groomed reception staff,
the smell of freshly brewed coffee,
a few people, mostly women, some with male partners,
quietly reading the morning papers
like tourists waiting to go on a day tour.
The waft of anxiety, the only hint.

 A dark splodge is found in my annual ultra sound.
It looks so inoffensive, just a small dark shadow.
I watch the screen as a core sample is removed.
Five times the hole puncher is fired into the dark shadow.
My breast is bruised
Amazing colours of blue and yellow surround my nipple.

 I won’t be able to save your nipple
my surgeon told me with concerned care
You have malignant cells in your breast duct.
Just behind your nipple.
Its your decision but I believe
its best to be sure  we get all the malignant cells.

 My sister went into surgery
I’m just getting a lump removed she said
Its no big deal
She awoke from surgery
without her left breast.
She died a year later.
She was only 35.

 I am going to have my nipple cut off.

Kay Gravell
16th Septemeber 2008