Dear Junkee

I was sitting in McDonald’s this afternoon in the CBD of Melbourne, I’d just sat down to eat my cheeseburger after wig shopping, and stumbled across a piece that was paid for by Pink Hope Community, written by Karni Maizels (http://junkee.com/makes-happy-id-tell-21-year-old-self-life-breast-cancer/175454). I commend Karni on coming forward and sharing her story to raise awareness for breast cancer. I have breast cancer too. It’s hard, and it sucks.

But this article made me cry. I cried because it was so deeply hurtful to those in my position with Stage 4 breast cancer – that is, cancer that has metastasised.

The part that hurt the most was one of her final comments:

If Not Now, Then When?

Facing the possibility of your life ending at the age of 24 reinvigorates your will to live. When I received my diagnosis, all the plans that I had for myself – like travelling, a promotion at work, saving for a house – went out the window. Knowing my life might end kept me up at night, thinking about why I was so hesitant to do all the things I wanted to do.

I’m sorry, but I call bullshit on this for so many reasons, but mostly the facts below. The five year median survival rates for breast cancer by stage are:

Stage 1 (or Stage 0 as it is also known) breast cancer has an almost 100% survival rate, even with a BRCA mutation.

Stage 2 breast cancer has a survival rate of 93%.

Stage 3 breast cancer, 72%.

Stage 4 breast cancer has a survival rate of 22%.

Her plans for travelling, a promotion, and saving for a house would have been interrupted temporarily, not permanently.

I have had to leave my job on salary continuance insurance, which runs out in 12 months because I’m not an executive at the company I work at. I am too unwell to go back to work full time, I cannot afford to work part time. And do I really want to spend my good days working in a job that doesn’t matter to anyone or anything except the company’s bottom line? I have lost my career.

I will never be able to have my own house, because I won’t live long enough to save for a deposit. My superannuation is invested so that I can have quick access to it should I need it to pay for a carer or specialised equipment or hospice care or all of these as my health deteriorates.

I can only travel because my life-prolonging medication – which I have access to on a compassionate program through the pharmaceutical company and that only just became accessible to some women on the PBS a couple of months ago – allows me enough “healthy time” between appointments to knock things off my bucket list. A literal bucket list because I am dying. I am using some of my superannuation money to afford this.

I’m 34 years old. Cancer has taken my hair, infiltrated my liver, eating my spine one vertebrae at a time, it’s taken my ovaries (precautionary, but it turns out they had cancer as well), and it’s going to take my life.

I don’t want to die. I don’t want to have cancer. But I do. And I live with it, every day.

I am a strong woman who is coping with this as best I can. I carry my diagnosis with pride, I use it to try to make small change when I can, and just try to keep another day above dirt without dissolving into tears and throwing a pity party about it all.

It’s bad enough that in October, breast cancer is going to be inescapable. But seeing articles glorifying people who were pretty much never going to die is so hard. I go from trucking along at a pace to stopping dead in my tracks and crying in a cheeseburger at Maccas. I get emotional whiplash.

The whole of October is dedicated to breast cancer awareness and fundraising. Everything is pink. Food, kitchen products, clothing, pins – you name it, in October it will be pink and donating a portion of proceeds to a breast cancer charity organisation, most likely BCNA or the McGrath Foundation.

I guess I should be thankful that I get a whole day to recognise Stage 4 breast cancer – October 13 – and I like to think that it’s just a coincidence that it falls on the 13^th, and not because it’s unlucky that we will likely die within five years.

I guess I should be thankful at all that my type of breast cancer – Inflammatory Breast Cancer – even has its own day and its own ribbon, given its rarity and aggression. My cancer doesn’t grow with a lump and a bump. It grows in layers, barely detectable by even the most experienced hands. Until it spreads to the skin, it’s unlikely to be noticed even if I had done regular breast checks.

I guess I should be thankful that I’m discouraged from attending many of the breakfasts and celebrations in October, because it would just overload my schedule. I’m discouraged from attending these events, just like I am discouraged from attending support groups, because my Stage 4 diagnosis, which is terminal (it’s always terminal), scares the other women and men who have so #courageously #battled the beast and come out the other side a true #blessed #warrior.

I’m sure you can feel my sarcasm.

Women like me don’t get a smiley editorial and a glamour shoot.

Women like me don’t get the attention that is so deserved. Less than 10% of all breast cancer funding goes towards where it is so desperately needed – into metastatic cancer research. We’re all aware of breast cancer, but how many people are aware that when it metastasises, that 78% of us will die within five years?

Breast cancer sucks enough as it is but rubbing our faces in the survival statistics by promoting Stage 1 and 2 stories is just mean.

So please, spare a thought and some coverage for the women (and men) out there who are truly struggling with breast cancer diagnosis and our legacies. We fly under the radar on so many things, from lack of allocated breast nurse resources and research funding, to just simple recognition of our plight.

Cancer is going to take everything from me eventually. But I still maintain that cancer is the best thing that has ever happened to me. I am a better friend, a better person, for having it. It has changed my perspective on my entire life – what remains of it – and if I can help just one person going through it by being ridiculously honest about the good and the bad of it all, then that is enough of a legacy for me.

If you’d ever like to talk to someone to give you the real rundown on what Stage 4 cancer is like, please get in contact. I would be more than willing to speak with you about what it’s like for me.

Kind regards

http://www.themutantmammary.com/