fifty shades of pink… the rant…

One Left, My Reality.
Photographed 2009, created 2013 by Carolyn Frayn

One Left, My Reality. Photographed 2009, Piece Created 2013

I began writing the following last October, pink October as it’s known. Although it seems to me we swim in pink 12 months of the year, I’ve noticed those off coloured waters long before I hit stage IV. Now that another October is upon us I thought I’d make it public.

I realize that things have been changing, that some of the greed has been forced into the light – however, I would still like to add my voice, and the following still seems relevant to me.

You know those pretty in pink ads that seem to be everywhere? They smack me in the face constantly. Those images of lovely, intact, healthy women posing with yet another pink product bribing you with their good intentions? Or, the products on store shelves with perfectly clean pink ribbon icons of hope, under which is written, “proud supporter of ‘name your’ breast cancer foundation?”

Pink ice scrapers, pink runners, pink hammers, almost every product known to us with a pink ribbon or pink banner of some sort; toilet paper, paper towels, bottled water, processed foods, you name it, I’m sure there is a pink version.

Pink ribbons on urns.

Don’t put me in that.

Personally, I find it overwhelming. It’s marketing. It’s cunning advertising campaign. It’s a thin veil hiding the ugly truth. Breast cancer seems to have become the best way for corporations to raise their profit margins. Breast cancer sells books, magazines, toiletries, necessities, and sundry bottles of unhelpful nonsense. Breast cancer apparently pays very well.

It is not, however, paying off for those of us who will die of breast cancer.

While we are living with this horrid, disfiguring, crippling, painful, killing disease, are we are supposed to sit back clutching our pink ribbons of hope, while we lose our ability to work, become a burden in our minds, and watch others profit heavily from our misery?

I call bullshit.

Breast cancer is killing us. On average 30% of those who have breast cancer will be dealt the stage IV cards. Many feel that number is higher, and please keep in mind the statistic doesn’t include those who start off with breast cancer at stage IV. We 30% plus have terminal breast cancer. There is no cure, we will not get better.

fifty shades of pink, a work in progress.
messed up, fractured, broken… what the pink ribbon means to me.
2013 © Carolyn Frayn

Breast cancer that reaches stage IV is also called metastatic breast cancer, the lesions that grow inside us, the tumours that hit bones and other organs, are known as mets. The terms metastatic breast cancer and stage IV breast cancer mean the same thing, our breast cancer has hit the terminal, the final destination. I know I repeat myself – it’s worth repeating.

Metastatic breast cancer is not a recurrence, it’s a deadly spread of our primary tumour or mass; those errant cells that start mutating within our breasts. Metastatic breast cancer means one thing, breast cancer will kill us if something else doesn’t first, like heart disease from our many, many poisonous, difficult and intrusive treatments. Some are diagnosed stage IV from the get go. Some get there pretty damn fast after their first diagnosis, and others are hit many years later. Metastatic breast cancer is a random beast.

Perception of Consciousness Three. © Carolyn Frayn

Perception of Consciousness Three, by Carolyn Frayn
Photographic Art with Encaustic on birch panel

Early detection does not catch everything. Early detection is a bit of a bust. Early detection is not a cure. If there were a cure, the irregularity and oft misleading results of early detection would not be such a concern.

Even with early detection, you may still endure years of some or all of the following: mutilation / amputation, chemotherapy, radiation, Herceptin if your breast cancer is HER2 positive, and hormone therapies if your cancer is hormone receptor positive. The many drugs we endure are nothing like taking Tylenol, or a series of antibiotics; they are hard core, they wreak havoc within our bodies, they are brutal to our systems, and they cause permanent damage. During those years, if you are properly informed, you know that breast cancer may still be swimming around inside of you, hoping to find another shore to pitch it’s tent.

Early detection does not eliminate or lessen the fact that 30% will reach stage IV, included in that number are those whose cancer was “detected early”.

In Canada approximately 5200 women and 60 men die of breast cancer every year. That’s 100 Canadian women a week. That’s 14 Canadian women a day. Globally, metastatic breast cancer claims over 450,000 lives each year.

For some reason those statistics do not fall within the accepted dynamic of the pink warrior mind set, at least not the mindset I know about. I guess we are the ugly truth. We who live with metastatic breast cancer are apparently hard to face within our pinked up world.

Personally, I wish I’d been force fed this information while I was stage III. I wish there were pamphlets, videos, lists of blogs, readily available statistics that were in my face BEFORE I joined the stage IV breast cancer parade, held after midnight, no pom poms. Perhaps I would have been prepared. Perhaps I would have finished some of the many things I thought could wait until I was older. Metastatic breast cancer has a wicked sense of irony.

The median expiration date from a stage IV diagnosis is 3 years. That is telling us that half of us will not live three years, the other half will live 3 years or longer. Some statistics claim the median is 2 years. Others say ignore the statistics because you could live much longer. I’m all for living longer, but those numbers made up the harsh reality wall I hit July 29th, 2012, those were the numbers I was told the day the metastatic tumour was FINALLY discovered on my C6 vertebra.

Statistics are a bit misleading however, and sometimes down right off kilter. But it’s the only piece of pie chart we have available to consume.

One statistic I found states that our 5 year survival rate is 10%, our 10 year survival rate is 2%. Those percentages are bleak aren’t they? What that does NOT mean however, is that those small percentages, also known as humans, will live a pain free, normal life.

While we live with a lot of unknown, we live with one certainty – mets are growing inside us, the pain is here to stay, and our journey will be very difficult.

The pink culture is not preparing people with breast cancer for what might come. The campaigns are so focused on positive imagery the gritty reality remains behind curtain number three. The booby prize. I had to say it. I never realized just how sexist the english language was until breast cancer knocked the wind out of me.

We who have breast cancer are NEVER free of breast cancer. Please believe that. If you are a breast cancer patient, be vigilant, don’t let new pain be brushed aside. Remember that there is no past tense with breast cancer – no one HAD breast cancer – it can come back and bite you in the ass – or in my case, the neck – at any time.

The truth is hard? New breast cancer survivors are scared of us? I’ve heard and read similar sentiments but, that’s my point, nothing should be pink-washed. Information passed to the newly diagnosed, or the recently treated, should not be sugarfied.

My response to those who feel we should quietly and carefully tread the pink waters so that we don’t rock the pink boat – don’t upset anyone still going through initial treatments, or those who just rang the chemo bell – is this:

Life is hard. I’m scared as hell too. And – my life still counts!

My future is one of pain and poison, not hope. Hope ran out the back door when I found out breast cancer took up residence in my vertebra. That future sounds pretty damn hard right? I’m going to speak my mind. I don’t wish to sit on my hands and quietly wait for death. I want to see progress. I wish someone told me every single hard truth four years ago.

One quarter of Canadian women do not believe that breast cancer can kill.

We are all aware of breast cancer. We speak breast cancer out loud, we celebrate it! However, the awareness does not relate the facts – the whole truth – that we are still dying.

Many people are not aware of METASTATIC breast cancer until it touches them directly.

There is no hope for 30% of us. Not at this time. I’m sorry, but are those not extremely horrid odds? Why did I not know this? Why don’t more people know this? Why do people still tell me outright that breast cancer can’t kill me, that it doesn’t kill anyone anymore?

Did pink-washing sanitize the facts?

I have no answers. I can scream out loud from the highest mountain that save the ta tas, save the boobies, feel yourself up, and porn for the cure just solidifies how this disease has become a jump on the bandwagon dumbed down pink fucking sexist joke to my senses… but who is listening? Apart from my loving family and friends? Apart from those of us who have fallen victim to breast cancer’s hushed reality?

Save the women. Save the men. Please. Most of us have already lost one or more of our breasts. Who the hell cares about our breasts when our lives are being lost? Cut off the limb to save the patient? Yes – but is the patient being saved? Or, do we not count anymore now that we’ve hit the pink wall?

Is the pink movement more important now than the women it was created to inform? I don’t believe the women behind the salmon or pink ribbons that initiated these waves of marketing ploys had a profit margin in mind. Certainly not the salmon ribbons. They wanted awareness – and they got it. A very good thing to be sure, and one we are all grateful for… however, it’s long past time to move on from awareness, it’s time to cure the damn disease.

I have not found any Canadian links along the same vein as the US based Metavivor. Most organizations that I’ve found continue equating awareness with a cure.

METAvivor – The METAvivor Research Program was established in 2009 with the singular goal of funding research to end death from metastatic breast cancer (MBC).