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 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.
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.
The weirdest thing, well one of the weird things about this little detour is that I felt fabulous. That’s the odd thing often about this cancer thing. If it’s caught early enough there are no symptoms. No visible, palpable, anythings. Now I feel like a sick person. Not only because I have been cut, pricked, prodded, put under too many times, scanned, ummed and ahhhed over. But because I keep getting asked if I’m ok, because I look grey. Funny how when someone asks you that, you instantly feel grey. Feel sick. Feel like a cancer patient. It’s kinda what I meant with that pink rant too. If you are surrounded by sadness you become sad. Well not today. Today it’s friday. And I’m going to lunch. To celebrate life and vigilance. Hopefully my red lips hide the grey.
I wrote an earlier post which I deleted because I was angry when I wrote it. I guess the only message I really wanted to convey (but it was lost in the rant), is be kind. This again. Think before you speak. Especially to young women whose mothers have just been diagnosed with recurrent breast cancer. Don’t be ignorant. And don’t assume I am. Or they are. It’s truly unfortunate that they aren’t. But it’s condescending to assume they are.
But. This post is a good news one. Goodish. Preliminary PETscan (I’ll write it in capitals because I don’t mind it having power today) results show no areas of concern elsewhere in my body. But. There is now evidence of what appears to be an ‘internal mammary lymph node mestasteses’ in my right breast. Whaaaat? Anyway, now I have to have another fine needle biopsy and CT scan early next week to check it out. Then armed with all this fucking knowledge, the medical oncologist will decide what next. With me of course. But right now, it’s mostly good news. Just with a damn but.
29 September. A lit fire to welcome you home. A made bed. And not by me. Bliss. I am grateful to be so looked after. And spoilt. I’m never leaving.
I am humbled, and often surprised to be honest, by who is reading me. And very grateful that my musings, and often my rants strike a chord with some of you in some way. Mostly because whether it’s crap about cancer, relationships, teenagers, children, moving home, moving country, surviving in a new one etc etc, most of you it seems can relate in some way to my venting. Even if it’s not always particularly attractive. And sometimes a tad uncomfortable. And maybe sometimes a little too much. So for you, and for me I’ll continue. But mostly because I have to finish my 365 gratefuls. Which brings me to my next point. It seems some and I have to admit mostly men (sorry) and in fairness those new to me, can’t understand why some of my posts are numbered. And some not. Oy vey. Ok … so, the numbered posts started at one and are currently at one hundred and forty six and are stored under category grateful posts 365. This was the starting point of all of this. For 365 days (aka one year)I need to formalise via this blog one thing I am grateful for. To help me focus on what I have, not what I don’t have. To acknowledge in the down days how much I have to be grateful for, the unexpected, the mundane, the expected. Gratitude is everything. This led to some questions from you about what where and how I am today, so the musings, sharings and ventings started, categorised mostly under stuff, but some also under why, which is where you’ll find this one. The three categories are on the right hand side of the home page (why, stuff, grateful posts 365) but you can also highlight any of the blue tags to see blogs on a particular subject, be it love, friends, wine, breast cancer whatever, whatever. Hope this makes a little sense. I have to say I know this is weird for some of you, confronting for others, helpful to others. But those who get it, who get me and the need for this, I thank you. Because it really is helping me.
I am horrified at how rapidly my eyes are getting weaker. I realised today I can’t even do groceries without my readers … not if I want to read any form of small print. They are just all so uninspiring. So, at the risk of being seen as very shallow I am so grateful for online shopping today, and the four pairs of funky readers I ordered, from vintage to cats eyes and even George Burns inspired ones.