I think I’ve been hiding. Well not really hiding but maybe licking my wounds so to speak. Reflecting. And not aloud. Trying to get my head around last year. As in, what the fuck was that? Building strength and in particular replenishing those inner reserves so I can keep on keeping on. I realised in January there were just none left. In fact I never even realised it. B did. And my friends. Who wanted to know where I had gone. And not only physically. But my presence had gone quiet. And they were worried about me. Its well documented how consciously fighting, dealing with your reality, treating it, makes you feel like you are doing something positive. Something conscious. Something noble to help yourself heal. And unconscious too, by being present in the everyday and just willing your best self to show up at each and every shitty little moment. And sharing with you all, made sure the best person was there, with the presence of you. Truth be told, I wasn’t worried about me, in fact I was that caught up in my inner being, I never even realised how far in I had gone. I think its called regrouping. So, its been a year and a month since my life as I knew it turned out to be a big fat lie. Well part of it. And I hate lies. Despite my thinking otherwise I’m only now truly accepting of it all. Not of the lie, but of the big beautiful truth. The truth of how blessed we all are. How blessed I am. How life is about suffering and illness and beauty and ugliness and lies and truth and fucked up ness and exquisiteness and what makes us unique is not how fabulous our lives are but how we don’t let the fabulousness or lack thereof define us but rather teach us, and help us find a new way of being. That isn’t rooted in ignorance, because as much as we think it is, ignorance ain’t bliss. We are all scared to know because then we can’t hide. I knew I couldn’t be guaranteed of being cancer free, but I chose to believe I was, to hold onto the words I wanted to hold onto, whilst deep down I knew this would always be my story. And whilst I said it, I never accepted it. So, now I really do know, and I’m living my life knowingly. Accepting that life and it’s difficulties are not battles to be won or lost because how then do we excuse ourselves if we lose no matter how hard we fought? Did we not fight hard enough? Were we not worthy of surviving? Bull crap. We are all worthy, we all just have a different story. And mine is no worse or better than yours, its just mine. And I’m going to live it the best way I can, because only I can. Fuck cancer, fuck everything that is shit in the world, and the best way to do it is to reframe it into our own unique stories that make us grow up and be grateful for every little moment. I hate the always positive shite as you know, I think I’m too much of a realist, although sometimes I don’t want to hear sad stories, because it breaks me inside a little more each time. And no, its not called denial its called acceptance. Stuff exists I can’t fix. Stuff exists I abhor. Platitudes piss me off. But truth and love and being present. Being honest. Being there. Just showing up and sharing the suckiness that life is sometimes, is what matters. It really just is what it is.
So, what is my current reality? I remain NED. I see my oncologist and my cancer surgeon every three months interchangeably. I’m still not mad about her but hey she’s good. I continue on my meds for the foreseeable future. I have surgery ahead of me to remove my right breast in totality. I need to schedule that because as with anything we are the ones who decide. No one else. And I will do it. I’m just liking being me for a bit. Stuff will be dealt with. And that’s so not hiding.
That’s what Kate said I was yesterday. And the funny or not so funny thing is, I was. And I am. In fact I am completely unplayable. I also always have been. A bit. It’s what makes you love or hate me. I have always ignited quickly. And often irrationally. And I can be a real bitch. But I had learnt to breathe a bit. But all this fucking around with my hormones has just sent me off the charts. It was already happening before this last recurrence due to Femara, my previous aromatase inhibitor, and my ‘mood stabilising’ meds no longer being effective. But now with all the new crap we have serious lift off. I react to everything with absolute venom and anger. There is no momentary recognition, ok this is annoying but really nothing to react to, there is just simply ape shit fucking hell hath no fury like a woman on Aromasin angry. The thing that really pisses me off though is not that I’m not given some slack for not being me. Or for being the worst version of me. Nor even that I have to humiliate myself by constantly saying, seriously guys cut me some slack here, I mean cancer. Even I’m bored by that. And the eye rolls indicate so are they. As we all are. The thing that actually pisses me off is that we are even having to be in this space. I have to be on this medication. It makes me impossible. Okay, more impossible. And I know I’m being impossible. But knowing doesn’t change a damn thing, psychobitch cares less. Then I think maybe you can stop doing what you’re doing that makes me become psychobitch even if it doesn’t seem fair. Because fuck it, none of this seems fair. But why should you. And who knows whats going to set me off. So I feel squarely fucked. I have to be on these meds. I knew the side effects were going to be beyond challenging. I never really thought they would create a chasm between me and those nearest to me. They are prescribed to give me more time before the next recurrrence and to reduce the risk of new cancer. And I like time. But if we all end up hating each other, is the time worth it. And then there’s all the other shit rattling around in my brain. Psychobitch feeds off that shit. Anyhow before you all wonder if you need to call for help, I’ve recognised I need to. I need to dump all my anger, grief, disappointment, stress, insecurity, unworthiness, uncertainty on someone. Someone who doesn’t love me and really couldn’t give a fuck what I say or do or think or believe. It won’t help me not be psychobitch, I need more meds for that. But it might make her a tad more tolerable. In the meantime, you have been warned. Psychobitch coming through.
I witnessed an outpouring of emotion in B this week that reminded me how it is so not all about me. Before you comment I really do know it’s not. But we make it about ourselves to protect everyone. And ourselves. If I’m coping or seen to be coping then they can cope too. It never ever is only about us but the one thing I know for sure, cancer, facing one’s mortality head on again and again and again, is a truly lonely reality. One that can’t be shared in its entirety. Not even with those who love you. Sometimes especially not even with those who love you. Not even with those who’ve been there and are still here. Because it’s just so bloody unique. We are. The circumstances are. Your realities are. You are. There is noone, as much as they wish to be there, with you in your head. Which for me is where the battle is won and lost. Your acceptance and willingness and determination to do battle is alone. You dig deep alone. And you hold yourself together. Because you must. Because if you start to cry, you fear you will never stop. I did what I must and do what I have to to carry on. But the depth of despair in those who can’t show you how deeply it hurts and how damaged they are at having to witness you suffer is beyond comprehension. By you not showing your vulnerability because you just can’t, doesn’t allow them to show theirs, which is just immense. To hold someone up, while helping them hold themselves up, by not sharing their real fear, so you can’t share yours is all kinds of fucked up. But all kinds of necessary. For some. Certainly for me. But sometimes the brave face we wear and force on others is so very unfair because whilst it is about us and our survival, it is about so much more. And yet I do still believe, be there in whatever form your loved one needs and when the time is right, let your guard down and show them your truth. Acceptance is a battle well and truly fought alone but within the safety of your presence one gets there a little less scarred. Pun intended.
I’m trying to be understanding and not throw something. This is how I started a post last week but never shared. I also didn’t throw anything. I just let it go. I know love is shared in a multitude of different ways and I know the terrain of cancer or any disease is not one easily traversed by those on the sidelines. And I understand how we all view the world is sculpted by our own experience and reality. But really. If you know me you know exactly who I am and what I think. Because fortunately or unfortunately there is nothing I do not share. I’m outspoken, I swear, I’m hardcore, I’m soft, I’m firm, I’m flexible, I’m insecure, I’m bold, I’m cautious, I’m controlling, I’m fallible, I’m scared, I’m brave but what I’m really really not is judgemental. Even the things I share about how not to speak to a person with cancer should be read in the tone in which they are intended. If that makes you fearful of how to be with me then its obvious to me you really don’t know me. Just tell me how you feel. Just rock up on my doorstep. Leave a note in my letterbox. Just send me a message. Call me. Just be there. Without your presence needing to be acknowledged because believe you me it is. No one is invited in. In to what? It just happens. But whatever you do, know I will not respond well to judgement of any kind. Especially not judgement and self pity masquerading as love and concern. I want to bold that last line, but I don’t like bold fonts. This fucking world is tough enough for many of us at times and when we are blindsided by more crap all we need from our friends is fuck I love you , I’ve got you. I’ve got your back. And don’t tell me you are concerned for me or fearful of the choices I make. How insulting to me and my life thus far. I’m an educated aware woman. If what I feel I need is a long lunch with copious amounts of pinot gris then believe you me that is exactly what I need.And if that makes you worry about me, hah, how sweet of you but really find someone else to worry about. I’m sorted. I never asked you to. Life is a beautiful wonderful and yes, sometimes fucked up gift and I’m determined to make the most of every little moment without worrying about what you might think. And if you are thinking about me please let it be with regret and kindness because I promise you that’s what I’m doing for you. Because really really, people in glass houses shouldn’t throw stones.
I will be pleasantly surprised apparently at how fast my eyebrows go back. So said my oncologist and actually I am. She was also a tad non plussed that they fell out a couple of months post treatment but then again it does happen. And they are growing back, all just looks a bit smudgy now. I’m less pleasantly surprised that my eyelashes were also not done with falling out. But the little stubby bits also seem to be getting a tad feistier. I’m a little done with this all.This letting the dust settle is not as easy as it seems. At least before I felt like I was busy in treatment as unpleasant as it was. I was actively doing something. Something more than popping a horrendous pill that just makes me feel old. I’m finding it rather hard to settle back down to being me. Because I don’t feel like me. But I’ll find me. Just like my eyelashes, I’m feeling a tad feistier everyday.
I was asked about my new tattoo yesterday. I haven’t yet understood my need to mark the insights and the awareness that cancer has brought me onto my skin. Maybe its as simple as a need to make my own beautiful statement rather than only see the ugly scars I had no control over. And don’t worry, I do see those as beautiful too now. But you know. And probably also the realisation of the impermanence of it all. So who really cares? Go mad I say. My beautiful refined heart tattoo is shared by all as I hold my hands up in thanks and gratitude and to honour the love in us all. Notice the play on refined and tattoo and see my wry smile. It is no surprise to those who know me that I admire women. I admire all humanity, but I reserve a special spot filled with admiration for the strength and connectedness that exists among women. Those who allow truth to be their story. And we are blessed with many such women in our family. An uniquely strong bond exists between us all. My sister and I are blessed my brother married our soul sister. And my mother is our reluctant heroine. She is beautiful and difficult and funny and delightful and impossible and has an inner strength we all have inherited. And its that strength that binds us and that allows us to know no matter what, we can do and be anything. We all have two daughters. And all six girls are beautiful creatures, both inside and out. And the bond they share is exquisite in its absoluteness. And without this unique and true sisterhood my life would be incomplete and my strength would be diminished. Cancer made us all look up and see once again the fragility of life and the beauty of love. So we decided to honour this beautiful bond and the love we share and we cherish with an exquisitely delicate heart tattoo, connecting us all in a very personal way. We will all always be one and together nothing is impossible. It symbolises the strength our love gives us all. To carry on. To be the change. To honour ourselves and the love we share each and everyday. To know how strong we are. But most of all it celebrates life. And our gratitude for it all. Its a little heart but what it symbolises is huge.
It’s been a month since my last chemo and four short months since my life was thrown into disarray. I’m not sure if the fact that unless I have to I’m not making it out of bed before 11am has everything to do with my body healing from the onslaught that has just been or my mind refusing to deal with my new reality. I am good and positive and so very grateful and my smiles are real but I am struggling a tad. I started taking the Aromasin, despite really resisting it because of the side effects and because, denial. It’s prescribed for advanced breast cancer in post menopausal women. Me. I lied in my earlier post about getting through the grief at losing who I was and having to accept who I really was and am. Well not really because it was a subtle tongue in cheek post and a huge cry for help. And I know I’m not defined by this but it’s my now moment. Then for some macabre reason last week I purchased a book called Without my mum. You got it, the mom dies of cancer at fifty or thereabouts and the woman has to deal with the reality of being a motherless mother. I don’t like that description. And not only because of what it means. It’s just horrid. Could be other ways of saying the same. A motherless mother. Clearly I’m not wishing that on my girls. I mean really how would they cope. That was meant to be funny. So I took my damn tablet. And will for the next 5 years at least. I could simply exercise even more, sprinkle more turmeric, imagine my cancer leaving my body and hope for the best. Or I can be an even more active participant in what is and what will be. So I’ll do both. The only problem is I have to find a way to get out of bed earlier first.
There is no magic number. A chemotherapy regimen is recommended based on you, your cancer, its stage, its idionsyncracies. And four combined cycles of taxotere and cyclophosphamide, so eight in total, our learned friends have discovered is optimal in most cases (can I stop proving I’m not most already) to achieve the desired result in cancers like mine. But four is not a magic number. I’m believing for me it’s three. And the irony of my love of all things symmetrical is not lost on me. So, I saw my brilliant insightful oncologist yesterday, and dammit she is brilliant and lovely in her slight emotionless yet very present way. We discussed much and then she sat back and said, right now I want you to just let the dust settle. For two months just let the dust settle. Is it only me who imagines the sparkles in that dust? I’m letting that magic dust settle. My body and my mind and my family were thrust into some fucking mammoth grinder the past four months with no warning, no reprieve and no breathing space. So for two months we breathe and I heal. I can do that because my brilliant insightful oncologist told me to. The reaction I had was a delayed hyper sensitivity to taxotere on a scale she has never seen. The risk of giving me more could result in life threatening internal swelling and long term tissue damage I’m not signing up for. The other option could be to start me on a new chemo regimen, from scratch. But, both my brilliant insighful oncologist and I know that will not be my reality. And she is comfortable with that. And so, so am I. Because my cancer is hormone receptive the past 12 years I have done everything I can to block all estrogen. Fuck has it been 12 years since my first diagnosis. Really? Can you blame me for being bored? But hey, I’m still here. Anyway, despite various meds I have been on to do this, and even very rudely been forced into early menopause, it came back. Or it never left. See, mindfuck. So I’m on a new kick ass adjuvant therapy the goal again, 5 years. 5 years NED. Aromasin, an aromatase inhibitor used to treat advanced breast cancer in post menopausal woman. Yup, thats me. Excuse me whilst I quietly upchuck, haven’t we been here before? Anyway. I’ve noticed the use of the acronym NED more and more. So, I haven’t been cancer free, duh, the past 8 years, I have just been 8 years NED. No Evidence of Disease. Slow learner, or just my denial coping strategy? So, I get that I live with cancer. And am happy with NED. And remain vigilant. And healthy. And that there are no absolutes. There are no one hundred percents. There are no guarantees. But there is the beautifully messy thing called life. And I love every last messy bit. And once the magic dust has settled and I am more me and less embroiled in this mindfuck. We will decide the rest. In the meantime, last chemo celebrations are way overdue.