Don’t you hate how when you reach a place, a decision, mindfully and finally peacefully, it suddenly gains its own momentum? Mocks you for ever thinking it was on your terms. To back up a bit I last shared 4 months or so ago after a previous hiatus and promised I hadn’t been hiding. And I hadn’t. Really. I’d just gone in. But these last 4 months I’ve been consciously out, busy filling my life with normality. I realise now I’ve also been waiting. But less consciously. Waiting to feel strong enough to give my kind cancer surgeon the nod to cut away my remaining breast. And an equally kind plastic surgeon the nod to try his best to recreate some semblance of feminine normality from nothing. Nothing. Everything has to go. Breast tissue, skin, nipple. Everything. I’ve been waiting to feel peaceful about deciding to deal with the what ifs rather than the what is for the first time in this fucked up recurring reality. And I’ve been waiting to feel peaceful about doing what I know I must. The irony is not lost on me that my first cancer surgeon 13 years ago advised me if she were me she would have removed everything. To not live in fear of recurrence. Although she admitted she’d never been faced with that decision. You never know how you’ll be until its you. And I hope it never is. So I chose to deal with what was. What is. And have continued to. And I have no regret. I refuse to be led by fear. To live in fear. Who knows how different I would have been had I done something I was not ready to do. Or felt was not necessary to do. I have never been overtreated. We’ve just done what is reasonable based on what we were presented with. The fact that my cancer isn’t reasonable and that I insist on being a one percenter, noone could have predicted. It could have been different. It also could have been worse. So now my waiting is over. I have peacefully come to the place of readiness both physically after the toll of last year and mentally, to move forward. To do what is reasonable. And now necessary. So I went to see the plastic surgeon my kind and committed cancer surgeon recommended, and he was lovely. On the same day I had a bone scan. An ongoing follow up to see if there is any metastases in my bones. You really don’t want that. And thank fuck there isnt any. It seems that aborted chemo did its bit. I also had another CT scan and damn if those pesky lymph nodes in my right breast that bothered the radiologists last time, are still bothering them. Not my reasonable doctors so much. So nor me. But. Once we open you up to remove your breast, we can check them out with pathology and do what is necessary says my reasonable doctor. So the momentum has started gathering. Its becoming a little more urgent. And it seems the plastic surgeon is in huge demand, which I suppose is a good thing (therein lies another conversation altogether). It seems my surgery is somewhat complex, go figure, due to previous treatment and surgeries, so my cancer surgeon wants to work with someone well versed in autologous reconstructions. The only time my cancer surgeon, my plastic surgeon (don’t you love the ownership) and the anaethetist they like to work with are available together in the forseeable not too distant future is the 5 September. Not distant enough. Much sooner than I had planned. I’ve got stuff on. Fuck. So much for mindfully and peacefully. Shit now needs to get done.
Anyhoo. I thought I might share this next phase too. Not just because it helps me, but it seems there are those who think a mastectomy is a boob job. Best I tell them otherwise.
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.
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.