bloodypink

There are a few things I want to get off my chest. Oh fuck, that’s hilarious. I really really didn’t mean that. But you have to admit its apt. Its this October pink thing. The breast cancer awareness thing. I have supported it resolutely every October and every year get involved. And this year I will too. Not by buying completely inappropriate products with a pink ribbon on them and most definitley not purely for the fund raising, well that that even gets where it is intended, but more for the solidarity.  I see hope and comradeship and comfort for those who need the support a group brings. I see the opportunity for some to share their love and admiration for those they know who are doing it tough. I see how those who feel hopeless in the face of it, feel they are doing something. I see its beauty in the huge strength it gives those going through breast cancer knowing they’re not alone. And I know the money raised does so much good. So much of the pink effort is about awareness and early detection of breast cancer and I get that. There is hope. It becomes about saving your breast and not losing your life. And that we can face. Save the tatas. Most of the money raised is allocated to research into early breast cancer. And by that I mean anything other than metastatic breast cancer. Breast cancer that has spread to other organs in the body.  Everyone who dies from breast cancer dies from metastatic breast cancer. It is stage 4. There is no stage 5. When I was first diagnosed I was non invasive stage 0, but with a high grade tumour. Then following my recurrences ended up invasive stage 3. An aggressive little bugger. The cancer had broken out of my breast and was on the move but hopefully we got it all before it settled anywhere. Before it metastisized. We live in hope. The reality is that 30%, yup I’m using stats, of early stage cancers will become stage 4. Will metastisize. And all breast cancer deaths occur becasue of metastasis. In fact most with stage 4 die within 24 months of diagnosis..

‘Despite these stark realities, the popular breast cancer fundraising movements give on average only 2% of their research funds to researching metastasis. Instead, their primary focus is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those facing the ultimate death sentence of stage 4 breast cancer. And while only 6% – 10% of initial breast cancer diagnoses are metastatic, 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die.This does not need to happen.  Many metastasis researchers believe that metastatic breast cancer could become a chronic, rather than terminal, disease, if only there were more money to do the research necessary to develop effective treatments’. These are the words of Metavivor. An organisation driving this worldwide.

So when you support any of the cancer fund raising initiatives, ask how much is being allocated to metastatic breast cancer. Or donate to Metavivor. I reckon by now we all know about breast cancer. To the point its almost become wallpaper. We are desensitised by its proliferation. I reckon most of us are over the pink. Or maybe thats just me. We all know about early detection being key. So don’t be a dick get tested. And insist on an ultrasound. But irrespective 30% will still die. And thats not pretty and that’s not pink. Discussions need to change. Things need to change. And selfishly I’m hoping it might happen in my lifetime.

 

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sucks

So we all know life sucks from time to time. And we all know to be grateful for the non sucky moments because they too will pass. As will the sucky ones. I keep telling myself this as I plan my next months. Yup I am having chemo. Again. A different chemo to the one I had before but chemo. And yes I will lose my hair, and potentially my nails, and my eyebrows and eyelashes and get mouth ulcers and vomit and rashes and nausea and extreme fatigue and neuropathy and generally hate the world. And it all fucking sucks. But I am resilient. I am a warrior woman. And I knew it was coming. I knew it the minute I read that awful word invasive on my pathology report. I knew that a systemic response would be needed. Its the medical consensus of many learned oncologists and pathologists and surgeons and who am I to argue? Anyway I know too much. I know the consequence of winning that argument but losing in the long run. And that’s not an option. Chemo sucks but having cancer sucks a whole lot more. So I am at peace with relinquishing control (okay a bit) and being guided by those reknowned for being cautious, sensible and non aggressive in their approach. And deep deep down I know I’ll sleep better knowing we are doing what we can.

pit

I received a huge parcel yesterday from the breast cancer network australia. A my care kit. Included was a berlei bra with inserts to fill any gaps, a handy reference guide to cancer, how to live with cancer, what your friends need to know, what your partner needs from your friends, a diary to record every awful moment, some pink sweets. Oh did I forget to mention it was all pink. Very pink. With a floral pattern. And so meaningful. And filled with pictures of women with that look in their eyes. The look I have grown to hate. The woeful we are so sad look. I do understand how packages like this make many women feel not alone, cared for and understood. But there is no way it doesn’t also make them feel pathetic and justifiably needy. You start to be that sad person. Especially now you have unwittingly signed up for this pink club full of well meaning people who feel sorry for you.  I just hate the way it is packaged. And I don’t mean the pink, although I hate that too. I mean the whimsy, the tone of voice, the feeling of weakness, the we’ll hold you up, the message of you can’t cope on your own with this. Mostly because its misleading. You have to cope on your own. You have to find your inner strength. You are so capable of doing it if you are allowed to. Without sinking into this pit of pink. Every single breast care nurse, therapist associated with breast care, breast cancer counsellor that I have encountered along the way has looked at me that same way. Head slightly tilted, pity and sadness in their eyes, as with a slightly hushed voice they ask, how are you doing? And I feed their need. I smile wanly. I don’t cuss and I don’t laugh. I get all needy, wondering how soon they’ll leave. Whilst I respect the selfless thing they do I do wonder how selfless it is really.  It seems to help them by feeling they’ve helped me so I let them believe they have. But they haven’t. Or maybe they have. By making me even more resolute. To not be the person they think I am. How novel would it be if one of them anyone one of them so enterwined in the breast cancer care bullshit looked me in the eye with a glint of steely humour and said, well this fucking sucks doesn’t it?  I wonder if I can send my pink package back with some suggestions where the funds could be better spent? I far preferred the other package I got from my very dear friend. My fuck cancer packet filled with goodies to take along to keep me company as I wait wait wait. And not only because it was predominantly black.

warrior woman

I met a wonderful friend of a friend of mine yesterday. I can’t stop thinking about her. You see she is a warrior woman. A gentle tenacious bright funny warrior woman, who has a brain tumour and was given 14 months to live. She was told the doctors could do no more for her. So she pursued her own path. She is currently on 27 months and counting. She has been dealt many blows by life yet is positive, witty and real.  She is self effacing and humble. She is an inspiration and she is my fear. Was my fear. You see she also had breast cancer and a mastectomy and chemo and all the stuff they scare you into having to make sure you are here five years later.  She made her five years and had just decided against a big celebration of life party when they discovered her brain tumour, a secondary from her breast cancer. I have no doubt the irony did not escape her. That meaningless silly bloody goal of 5 years that we hold like a beacon of hope, living in limbo, counting the years, months, weeks and days, definitely even if not obviously, believing that on the stroke of midnight of our last day of being 5 years cancer free, we will finally be set free. Free from cancer. Free from fear. And whilst I booted fear a while back, meeting her made me face it for real. She gave me goosebumps and her matter of fact retelling of her tale reduced me to tears. But not for me, but for the wonderful inspiring human being I was graced to be in the company of. I would be proud to be her. I am honoured to have a daughter named Kate just like her. May she grow to be just like the warrior woman I met yesterday. Strong and present and true.