B shaved my head this morning. Not much can beat that for a truly intimate, I see you moment. You see nothing in life is ever perfect. Your hair doesn’t fall out neatly all at once. Each chemo session ravages you a little more. Bit by bit. But it also allows you a semblance of control. Of ownership. I have huge bald spots. I would look like coco the clown on a really bad day if what still remains grew. Or something from a horror movie. Actually I’ve always hated clowns. Anyway. How strange our new normal is. Yet how beautiful. The girls wander past the bathroom. Not even pausing, just smiling. It is what it is. We do what we must. Another 21 days are nearly done, which means it’s chemo this week again. Damn time rolls around fucking fast. Feeling less vulnerable, but still prickly. Just trepidation I think at what this week holds. And sets off. And at my fragility. It slowly breaks you down. Bit by bit. Thank fuck I’m halfway. It really is all up from here. Time for some red lippy methinks.
I had a little tantrum yesterday. As in, I don’t wanna do this again. I can and I will and I am, but I really really don’t wanna. It’s those fucking bald spots that did it. And I know I am so much more than my hair, and I know I am blessed to not be terminal, and I’m doing this to ensure I am not terminal anytime soon, but allow me this rant. Rocking the no hair look, and I mean no hair, no eyebrows, no eyelashes, no pubes, yay me, should be a once in a lifetime achievement. Dammit. I know you can all see through the smile, it’s kind of hard to hide the vulnerabilty in my eyes or the tears that well up when I least expect it. And I am brave and I will do what I need to do, so please believe that what I say and what you see is true, but bloody hell, I don’t wanna. It’s cool to be unique, to be different and yes to be the one percent. Apparently that is what I am. A one percenter. The likelihood of cancer recurring after a mastectomy and chemo is one percent. Seriously. Serves me right for always wanting to stand out.
So. Think I’m feeling the trepidation of knowing what’s coming. Welcoming it in a weird way because it’s still my best shot. But this thursday I willingly poison myself again. Time to shave me thinks.
I have a fetish for a man’s forearm. A strong forearm with slightly curly blonde hairs I can twist my fingers in. It always does it for me. Makes me feel safe, loved, held, invincible, fragile. And it belongs to one man. B is my everything. I could not be or do any of the crap I have to if it weren’t for him. Just holding me. Letting me be me. Being kind, being tough, being caring, being blunt. I am a fucked up case of normal and not normal, with moments of calm and moments of utter insanity. I think we all probably are, some of us just hide it better than others. I have the best gift of all. Someone I hide nothing from. Someone who really does know the dark and the light that is me. Someone who seems to see the light. And quite like the dark. I’m feeling especially maudlin today you see, because today is B’s birthday. And its a crap time for us. And I just felt i wanted to scream from the rooftops how much I adore him. And how much I know I am adored. But I know the girls would be mortified. So I wrote it down instead. You are the only reason I can do this. I see in your eyes the belief in me that makes me know I can. I don’t know why or how we found each other or what made us make it work, but I am grateful every day I breathe that I have you. Not only because of our two beautiful daughters but because I honestly know that any part of my world without you in it, would just not be. You make me be. You make us us. We are us. We are the only thing I know to be truly real. Happy birthday my angel. I love you. And those beautiful forearms.
It’s been a tough five days since chemo. I have desperately tried to remove myself from the nausea that follows me whether I stand, sit, lie or sleep. I hate the way I taste and smell, I hate the way everything tastes and smells. My body aches, I have sores in my mouth, my head feels trapped in a cave with moss in my pores. I feel so tired, it hurts sometimes to talk. But I can feel the easing. I am woman. Hear me roar.
I don’t have a lot of friends. Real friends. And I choose it that way. I am social and gregarious but yet guarded and uncertain. Fuck off, I am. Even more so in this wildly accessible world we operate in. I seek authenticity. I hurt easily. I can shut down in an often imperceptible way. I expect a lot and I give a lot. My best friend in the whole wide world is B. He holds my heart, my soul, my fragilty, my me’ness with such tenderness and such honesty. He softens me in ways only he can see. And me him. I trust him with my thoughts, my heart, my truth and my life. I choose him above all else. And then there’s my family. Who know the worst and the best of me yet love me still. And I them. Deeply. But it’s the friendships forged over life stages that didn’t need to survive or count that I want to honour. That handful of beautiful exquisite fuck the world women who see deep into my soul and past the pretense. We are all so different, such different ages, we live all over the world, we are connected by blood, by marriage and by nothing at all. But something binds us. Something so raw and honest. Something called truth. I need you to know I see it, I am grateful for it, I protect it and I thank you for it. Especially right now. Fuck, it keeps me sane.
I have to admit I’m a little bored. I’m supposed to be packing and I’m sitting here researching the side effects of docetaxel and cyclophosphamide. It’s not what I’m reading that’s boring it’s actually quite interesting. Fascinating even. But nauseating. Truly nauseating for those in the know. It’s the fact that I am reading it that bores me. And that all I think and talk about right now is this insiduous, (I like that word C), fucker. I am bored at being here again. I am bored that my family are here again. Seriously if I need to be the poster child (I uses the term lightly) for anything, did it have to be this? And I don’t mean to be ungrateful, I really do get the goodness that can come from crap. And that crap happens. And what sets us apart is how we handle the crap. And that my determination to be positive (hate that word sometimes, because really what chioce do we have) and my strength to do what I must could help others. And I am so grateful for that. But I’m bored. And yes, probably mildly depressed.
I met my oncologist. She is brilliant by reputation. And I found her delightfully as insightful as she was brilliant. My brilliant insightful oncologist has unfortunately not ruled out chemotherapy. She is mindful of not overtreating nor undertreating me. So I am to be discussed and reviewed further. Love all these brilliant minds being a tad baffled by me. I think. Final decision to be made next Thursday. If you believe that you’ll believe anything. Anyway I’m not scared. It’s awful but I will do whatever I need to. And anyway I need a haircut.
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.
I’m not a fool. And I know no-one thinks I am. And I am so filled with love at the courage it takes for people to reach out and be present and try fix things. You can’t. I can’t. It’s not to be fixed. It’s to be held, accepted and faced. And responded to. And that I have done and will continue to do. Please be confident in the knowledge that I have researched the hell out of this. I have pursued alternative therapies, I have eaten raw food only, I gave up sugar, juiced myself and my family until we all threw up a little in our mouths at the thought (love you for this my friend). I too have the internet and can google and be swayed by those who feed on the fear we all have within us. I get it. I really do. And I so applaud you for your chosen path. It’s just not mine. I am too conscious of the untold stories, the swept away stories of those who didn’t survive by simply healing themselves. And sadly their slavish followers. I have not chosen my approach lightly. But with wisdom and compassion and peace. It is holistic but it also encourages scientific scrutiny. And for those who feel if I had done something else maybe we wouldn’t be here right now, or that I chose this, I hear your fear. But you can keep it. And your judgement. But I’ll take your love.