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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lipstick

So by now some of you may have seen the video B posted of me. It was not a good day but I guess that’s the point. They aren’t good days. They’re the best we can make them days. So whilst I’m so grateful for all the beautiful comments about how wonderful I look, how well I look, they worry me. I don’t want to in anyway trivialise the awfulness, the fear, the yuckiness, the desperateness, the late night bathroom floor moments, the self pitying, the pain, the soreness. It’s hard to share those moments, but it’s easy to share the smiles. It’s not always easy to smile mind you and I think you all see it for what it is, but I just need to make sure you do. A choice. A touch of lipstick, a creamy foundation, some mascara on my fast departing lashes, is my armour to fight the day. I share because I want to give strength to those who are struggling, to show how sometimes a smile, tough though it may be to smile, helps lift the spirit and does give you energy to move forward.  That chemo whilst it makes you feel shit, is not something to fear.  If even just one person who chose not to do chemo because of fear, fear of being bald, fear of the debilitating side effects, fear driven by others fear, fear driven by others self serving ideologies or conspiracy theories or self healing crap and then leaves it too late sees me and feels hopeful, then fuck it’s been worth it.  Healthy living, healthy eating, exercising, reducing stress, being mindful, making the right choices, keeping your system alkaline, living a moderate healthy life are all fucking givens for living. I did it all. I lived it. Yet I got cancer. So, what? Am I a bad person? Do I have many lessons to learn?  Fuck yes, we all do. But the one I have learnt is do not fear.  It’s what kills you.

rapunzel

I really have grown. A growing up I would have chosen differently but hey. Life does its thing when we are asleep. I’m just grateful I woke up. I cut all my hair off on Saturday. Well 30cms off so I could donate it to kids for cancer. It had to be on Saturday because B needed to be there and I had to do it before chemo starts. And B is away this week. So I had to do it quickly and without really thinking too long about it. And it didn’t bother me. Well apart from looking far too mature, and perhaps there is a message in there somewhere. First time round it bothered me a lot. My hair was my security. It made me me. But I did learn I was so much more than my hair. It was just something I could control. This time I chose to cut it off with knowledge and no fear. And still, those scissors were like a shard piercing my this isn’t really happening again protective shell. Just for a moment, I hated reality staring back at me. But I’m ready for this. And I need you to be too please. I’m getting far too many head tilts lately. All my hair on my body will fall out. I am not fearful. Yes I have heard about cold caps. Yes I am glad, really I am, that your mother’s aunt’s second cousin had chemo and kept all her hair. Unfortunately you know too little. Or fortunately. Not all chemotherapy is the same. There are different regimens used depending on you, your type of cancer, your grade, your stage, your history. How you respond to treatment is also so very personal and enterwined in all of the above and who you are. There are many different types of breast cancers too, and treatment depends not only on stage and type but on whether it’s hormone receptive or not, BRACA postive or not, HER2 positive or not, invasive or not, advanced or not blah blah blah. Mine is advanced. And invasive. And hormone positive. I think you get the gist. I am not fearul of losing my hair. All my energy will be directed at healing and saving my life not at saving a few strands of hair. I vomit at the thought of all that fear. I truly feel so light and empowered right now, which is exactly where I need to be. And I do love the care behind your suggestions, but if there is none, please fuck off.

Thursday I start. Every 21 days. 4 cycles. Could be worse.

too soon

In response to a text asking what’s up from a very dear friend of mine. I started to respond nothing. Just waiting waiting waiting. It’s killing me. I chuckled at the irony and was about to hit send, when I thought. Shit is it too soon? Too soon for humour, albeit dark. So I didn’t. But I wished I had, because she would have got it. And it’s honest. And I prefer it to the gentle pity and sadness I feel around me. Please don’t be scared of me and this thing. Or for me. I get why you are and I love you for it, but don’t be. I’m really not. I’m just annoyed I have to find a new label. I was liking the nearly 10years cancer free one. But as B said, stop labelling stuff. And he’s right, I do. I realised that as through my initial fuck my life tears I said to him, I loved that Kate and Jem were the girls whose mom had had cancer, not the girls whose mom has cancer. Really just cos I can’t stand the pity. For me, for them, for us. But I know its source. That damn fear. And I understand it. And I love you all for it. But I release you all from it. It’s killing me.

So where am I? In bed with two gorgeous dogs for company, healing and waiting for my petscan on Thursday and oncologist feedback thereafter. Waiting waiting waiting.

three hundred and forty six

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26 December. I unwittingly tried to minimise change in my children’s worlds. Tried to protect them from the one thing they actually needed to learn to deal with. The one constant in the world we know. Change. I blame my control freak tendencies and forgive myself because my intentions were good, my motive was love. So I am grateful, so very grateful that I have learnt that whilst change can be painful, it can also be beautiful. If you embrace it. It is liberating, you grow from it, you learn a lot, not only about yourself but about others. And I most especially learnt what I was capable of. And not to be fearful. I know my girls have grown immeasurably too. I knew it for a fact today when I stumbled across this passage Kate had found meaningful enough in her book to capture. Things do change. And life doesn’t stop for anybody. I am grateful my girls know this.  Really know it. And more importantly embrace it. Embrace the adventure of life, the ups and downs.  And are learning not to take what they have right now for granted. And I’m grateful I no longer feel guilty they had to face fears I would rather they hadn’t, I now see it as a gift. To us all.

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.