Category Archives: My Breast Cancer Story

American Art Therapy Association Conference

I’m excited to be heading off to the American Art Therapy Association (AATA) annual conference in Baltimore Maryland from 7-10 July 2016, where I will be presenting a Master class on arts based research. My presentation will be based on my Doctorate in Creative Arts Therapy which I undertook at MIECAT, Australia. See the abstract below.

Abstract

This enquiry is grounded in my own personal experience of breast cancer. I experienced the loss of my breast, not only as a change to the shape and feel of my physical body but also in the way I understood and expressed myself as a woman. Still largely based on the bio-medical paradigm, the medical system in Australia encourages women to have a breast reconstruction at the same time, or soon after, their mastectomy in order to nalise their treatment and ensure they get back to “normal” as soon as possible. This enquiry explores how I used creative arts to nd meaning in my lived experience of breast cancer; in particular, how I made sense of my changed body, came to a decision to not have a breast reconstruction, and explored how to live as a one-breasted woman.

Using creative arts I attempted to speak from my body. Situated within a review of di erent discourses of the body, my enquiry centres on an understanding of the feminist phenomenological body as a continuously forming shape-shifting entity intermingled and coconstructed with the social and natural world. Working alone and alongside other women, I undertook numerous enquiry cycles using a range of di erent art modalities, with a particular focus on sensory knowing formed through relationship with the art materials. Touch provided the bridge between my experiencing, emotion,

and movement into art-making, allowing me to heighten my sensory awareness thus providing the space for new knowing to arise within my body.

Using a fusion of di erent modalities, my enquiry centred on two key images. One image created from my painted body allowed me to explore existential issues of mortality and the meaning of life, while the pink lady image provoked me to explore my feelings of anger, vulnerability, and shame. Through these images I discovered that a particular artwork is able to hold the complexity of lived experience.

My own arts based exploration of my breast cancer experience provides a method for other women to follow, it will inform my own arts based practice, provides a template for arts based groupwork, and contributes to the understanding of women’s lived experience of breast cancer that can influence the support provided by family, friends, and health services.

The full thesis is available on https://ikoninstitute.academia.edu/KayGravell/Thesis-Chapters

 

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Plaster casts

I decided to make a plaster cast of my chest before my first operation.  The experience of wetting the plaster bandages and then applying them to my chest was quite meditative and comforting. I smoothed the plaster bandages creating a second hardened skin. Encased in my protective plaster armour I  felt secure, but I was aware that I was creating a plaster memorial of my intact left breast. I made another plaster cast after my mastectomy. This plaster cast accentuated the new concave shape of my left chest wall.

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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

Japan Trip

I had a planned trip to Japan and decide to go ahead with this before my surgery. Being in another country allows me to be truly present to every moment of my experience. Although I am immersed in my experience of Japan, my nipple is constantly at the outer edge of my awareness.   I see nipples everywhere! I take photos of nipples in the forest, in the city, in buildings, in the street, in the airplane and in temples.

 

Incredibly I seem to come across ‘damaged or missing left nipples’ everywhere!

Breast Prints

I decide to do a series of images of my left breast. I smother it with paint and make imprints on the paper. I want to portray a sense of decay and death but it just looks beautiful. Like a joyful dance of breasts.  Full of colour. Each breast imprint is so beautiful with layers of colour. They remind me of a gang of parrots and lorikeets with their bright colours and alert eyes, formed by my nipple. It seems a great way to immortalize my nipple to have it captured in such a joyful, colourful manner.

The DCIS Booklet

I read the booklet on DCIS and am blown away by the presentation of the data on treatment outcomes, in which 🙂  symbol is used to represent survival and
😦 symbol to represent death. I think, well I guess you would be a bit sad if you die!

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.

She operates two weeks later. It is frustrating knowing that my healing breast will be again be cut into. I know the nurses and the drill. Although I hate having an anaesthetic it all goes well and I’m back home that night tucking into a delicious dinner.

I attend my follow-up appointment curious to see whether I will need to have radiotherapy. My daughter insists on coming with me even though I told her I don’t need her as it will be just be a standard follow up. The nurse checks my wound and says its healing well. I still haven’t seen my scar as I have had dressings on it all the time. I’m curious to see how I will look. I guess I can get a false nipple to wear; I’d seen an episode of “Sex in the City” in which one of the characters had worn one to attract men.

We wait in the room for the surgeon, eventually she walks in her expression as inscrutable as ever. She sits down and says, “it is totally unexpected but we still didn’t get clear margins. We will need to take the whole breast off to ensure you are clear. It has been growing so stealthily without being picked up by any of our tests, we would never know what was happening.” You will have to have a mastectomy. I was in complete shock! Here I have been worrying so much about how I would be without a nipple and now I am going to have my breast cut off! Suddenly the aesthetics seem so less important than living or dying.

The day before my operation I have another appointment with my surgeon. The nurse shows me different prosthesis I could use and gives me a free Berlie mastectomy bra.  It finally hits me there in her office. By this time tomorrow I will no longer have my left breast. My surgeon asked me what sort of mastectomy I want. Whether a clean cut to the chest wall or one that entailed a smaller incision and retained some skin so that I could have a reconstruction later. I don’t know! Part of me would like to have a clean excision to my chest wall and proudly bear my scar. But another part of me would like to keep the option of having a breast reconstruction later. She then asks me whether I want to have the lymph nodes that the breast drains into removed. I DON”T KNOW! This is all too much.

For the first time she doesn’t sound so confident that the pathology will be clear after my breast is removed. I guess her confidence is dented as well. The prospect of me having invasive cancer now seems like an option. For the first time I am scared! I don’t want to die! Not yet! When is a right time to die? My previous concerns about losing a nipple seem less significant and my concerns about having slightly sagging breasts now appear truly trivial.  I walk out of the clinic with my nice pink Berlie gift bag. I feel others compassionate glances as they know this means I’m having a mastectomy.

Diagnosis

Microscopic image of breast cancer cells dividing (image downloaded from www.wellcomeimages.org)

I was diagnosed with DCIS in my left breast during my regular annual breast screen and review in September 2008. I had been having annual reviews at a breast clinic as my sister died of breast cancer at 35 years of age and I had a number of problems with my breast. The cancer was detected in the ultra sound scan and confirmed through a biopsy. The cancerous cells were located just behind my nipple.