Category Archives: stuff

genius

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A friend asked what I did last time I was bald, did I use soap on my head? Shampoo? I couldn’t remember. Well now I know. I shampoo. And condition. How funny. Clearly not necessary but yet it is. Life is as it was. Yeah fucking right. This all happened a tad too quickly. I keep catching glimpses of this vaguely familiar bald chick in the mirror. What the fuck?  Anyway, second chemo down. I can’t say the day was as much of a hoot as last time. Mostly because our inappropriate trauma nurse Aaron wasn’t there, so we missed the David Lynch esque experience. But also because my damn veins are shutting down. And I simply refuse to have a portacath surgically inserted. Anyway the persistent and delightful nurses succeeded at attempt number six. I’ll even forgive them the ‘are you still sure you don’t want a portacath inserted’ comment after it all. Because they were delightful. And only concerned for me. And to be honest I was feeling particularly upbeat as I finally got the results of the BRCA1 and BRCA2 gene test back, and I have no genetic mutation. This is clearly brilliant news for my immediate family and especially my beautiful daughters. I can’t pass a gene fault on because I don’t have one. Yehaaa. But before you go down the path of why then, who the fuck knows. About seventy five percent of cancers are not due to known gene mutations, so in this instance I’m one of many. And for my family, pleased to be. Weird as that sounds. No decisions re immediate prophylactic surgeries needed. But vigilance still required. And that is cause for celebration.

wanna

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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.

hero

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I’m so not a hero. Whilst I’m blown away by all the beautiful comments due to my oversharing I really am not. A hero I mean. I’m just really trying my damndest to get through this thing intact. Well intact ish. And to be authentic. I don’t believe in the always be positive crap. I mean obviously be positive. But always be positive? What a crock of shit. Sometimes be sad and own that moment. Sometimes be angry and own that moment. Sometimes be vulnerable and own that moment. And yes fuck it, share it with those who love you. Be authentic. No one is happy and positive all of the fucking time. That is just weird and masks you from real emotion. It doesn’t allow people to let you see them in all their ugliness and glory. But let them be moments you allow, acknowledge and let go. Because being happy and positive is so much a better choice. So I choose to love this beautiful messy life we are all blessed to share. I’m a bit of a quote girl and fuck me I think I’m  becoming a tattoo girl too. On my list of things to do today is phone my oncologist to find out if my white blood count is high enough so I can get a tattoo. I mean really, who is so deep in la la land. Anyway. A quote my girls have heard ad nauseum, you can’t control what happens to you, only how you choose to respond, is how I choose to live my life. The big word for me in this is choose. We have a choice. That is what sets us apart. And makes us us. Why would you choose to give up? To be fearful. To not be positive. I don’t. So the hair thing is really a choice to live my truth. Saying fuck you to this thing. But yet acknowledging it. My hair will fall out. So this is not a new hairdo but a big huge it is what it is. See the quote thing again? Anyway it’s choosing to be light at a not light time. Choosing not to go into hiding.  I wake up and see this strange odd woman looking back at me and I smile. And I feel like a warrior. And why would you not. Not decide to smile. A smile hides a heap of shit but damn it can make you feel good. It’s just a choice. And if that makes me heroic, dammit I’ll own it.

So where am I now. Day 13 of first chemo. They count it in days. Because at roughly certain days you should expect a new kind of hell. So on day 13  I’m supposed to feel slightly less nauseous, more fatigue, the debilitating muscle pains should abate, and my white blood count should improve. All good in the land of hell actually. And just as I feel like me again it’s time for the next round. And that’s next week already. Day 21. When my hair should fall out. Loving the should. Maybe I’ll stay blonde. What a hoot.

mine

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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.

blah

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Yesterday was a weirdly comical day with blah moments. We made a new friend Aaron, the inappropriate trauma nurse who was helping out on the chemo ward for the day. He looked more lost than us. He grabbed my chart to go through what was needed, giving me an odd look. The head nurse told him that was the next door ladies chart. Phew he said, you don’t look like a Betty. The start of many chuckles which got us through the day. I had decided to wear my new jump suit. As you do. Gotta feel stylish for chemo right. Except not so when you are attached to a chemo drip and need to wee a lot because of all the fluids flushing the poison throughout your system. What was I thinking. Aaron met my brilliant insightful oncologist and as she left the ward, wheeled his chair behind her, and said, is that your doctor? Smokin’! I think I might have cancer. Barbra our head nurse had the hands of an angel and managed to get my cannula in my fucked up veins from my previous chemo so no surgical port needed, yay me. She kept mocking the patronising tone of the dvd she shared with us showing  me how to inject myself today to boost my white blood cells. You know how I feel about pratronising tones. Oh and Betty’s partner broke her reclining chemo chair. So all in all we fit in quite well. I was sent home three hours later armed with all sorts of anti nausea meds and cortisol steroids to get me through the next three weeks till next chemo. It seems my nails will almost certainly fall off. Some patients seemed to have success with black nail polish, something to do with keeping the light away from the chemicals. So, I’m having my nails done today. Bit like that haircut. Oh and B and I just fucked up the self injecting thing so perhaps we should have mocked the dvd’s patronising tone a tad less and listened more. Ok it was me, B’s beautifully thorough and I’m too impatient. I’ll take his lead from now on. I will. Onwards and upwards.

rapunzel

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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.

sucks

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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.

friends

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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.

bored

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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.

lost

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I promise it’s not you. It’s me.  I know sometimes it must be hard to be there for me when I block you at every turn. Especially your offers of companionship. You see when I’m alone I don’t need to be brave for anyone. It’s that brave face for the world thing. For my kids thing. Because what choice do I have thing. And it’s not a lie thing. I am that brave face you see. Because it’s in those moments within me that I find the strength to be the person I need to be. It does help to share but some things just can’t be shared. This cancer fight is fought late at night when I rage with the world and cry my ugly tears. And not because Im fearful. I know my outcome is good. I know we got this early enough and we will manage it. But the worst thing already happened. It came back. Or it never left me. And that is what I need to face on my own. With your help. But mostly on my own. It’s where the fight is fought and won. But please don’t stop offering. I love you for it. And sometimes I do get lost inside my mind.

So for those who asked, preliminary biopsy results of my right breast were good, but they aren’t all in. They’re being processed further? Whatever the fuck that means. Anyway I remain quietly confident taking my lead from my brilliant kind surgeon. Today I meet with the oncologist, who my brilliant kind surgeon promises will have all my results, so we can agree how to keep this fucker away. Or blow it to smithereens.