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.
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.
So I went and saw my oncologist last week for another lets see how things are going visit. I’m liking her a tad less every visit. It’s that emotionally unavailable bit. And I get it. But I just need her to see me. Me. Not a cancer patient. Anyhooo I am trundling along, my bloodwork was good, my fatigue is lessening, I’m starting to make peace with and accept the side effects of the Aromasin. It just becomes your new normal. I have changed my mood stabilising meds, see what I did there, and psychobitch seems to be making fewer appearances, although my family might disagree. I am delaying decisions re future treatment until next year. 2016 has done enough. I am finally getting at fifty that life is a series of commas. There are no full stops. And especially with cancer. It is not over. It never was over. I will never be able to say with certainty I am cancer free. So what am I you ask? I am officially in remission, which is defined as ‘a temporary diminution of the severity of disease or pain’. Yay me. No seriously. It’s as good as it gets. There is no evidence of disease. For now. I am feeling more like me than I have in a very long time, psychobitch and my inabilty to remember anything vaguely important aside. But there is the reality of the ‘for now’. And all that does is remind me, and you I fucking hope, that it is all bloody temporary, the good and the bad. It will all pass. So celebrate every little good and seek it out, see it, and deal with the bad with as much grace and dignity as you can muster, because it is just a comma. Not a period. Period.
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 thought I’d let things fall where they needed to this past month or so. Heeding the advice of many that whilst things feel like they’re falling apart they’re not. They’re just falling into something different. And ain’t that the truth. Bugger is I was quite happy with the before. But growth is something I welcome and change something I’ve learnt to. And we do grow and even transform when we have huge obstacles to overcome. Into something new. But I just can’t quite settle into the new me yet so I’m still letting things fall in to place. Or further apart. And then hopefully back together again. All I do know is, I am not who I was. But dammit, this new me needs to get her shit together soon. I’m feeling far more vulnerable now than when I was kicking cancer’s ass. I was focussed. I was determined. I was a warrior. I had a purpose. I had an army. I was positive. I was not needy. I was not uncertain. I am not fearful, nor am I negative. And I am so very grateful. But just a little hesistant. A little uncomfortable. A little do I just carry on like nothing happened. Like everything is not different. Forever. Do I live every day like its my last. Do I bother. Do I doubt it all. Do I celebrate it all. Do I just be. Do I love the different me that looks back at me. Obviously I know the answers and hopefully I’ll do exactly that once things all fall into place. And they will. And then they won’t. But universe, no more growing needed. I’m all grown up now.
I had a little meltdown two days ago. Well not really a meltdown but a little emotional dumping of stuff. All over my girlfriends. My family and B. Mostly to do with my inability to move. My desire to get up and go has got up and gone. And I just can’t fucking find it. And then lots of other stuff too that I thought I had so dealt with but um clearly not. I am not perfect. I know you know it. And I know it. But I have to be. I know I don’t really. But its what I do. I’ve been the perfect cancer survivor. The example of how to be. The person friends say, don’t worry look at Lianne, she’s survived. And look I mean really look how well I’ve handled my third recurrence too. Look at me. But actually don’t. Because then you’ll see how less than perfect I am. How scared I am. How I’ve never really known how to be. How being perfect is how I hide the imperfection that is my fear. My truth. And all our realities. Beause we are all imperfect. Which is just beautifully perfect. Anyway. I don’t know how to be perfect at this new phase. And I don’t like this feeling. I don’t like it. Not one bit. I don’t like how I feel. I don’t like how I think. I don’t like how I look. I don’t like feeling so frustrated by it all. I don’t like how its all changed. I don’t like feeling like it was a lie. I don’t like not being a survivor. And yet I always hated that word. I don’t like it one little bit that its owning me. I don’t know how to be me right now. I don’t like feeling so self pitying and self indulgent. Me me me. I know how damn lucky I am. And I am so very grateful for it all. And I know its all to be expected, and all in the realm of normal for what is my new normal. Thank fuck for my friends, family and B for allowing me to spew. For loving my imperfections, because they all know what a fuck up I really am. We all are. For knowing I’m really not dealing well with this. How I’m struggling knowing what I thought was, never was. How dark it is in my head sometimes. But dumping keeps it real. Sharing lets me see what I think. And gain perspective. And perspective is a beautful thing. And yes I am perfect. Perfectly imperfect. Or imperfectly perfect. Oh fuck who cares, i just want to get up and go.
So the dust has settled two months post my aborted fourth chemo session. It wasn’t as magical as I had hoped. Or as miraculous. I’m no more able to digest nor make decisions about tomorrow. So I’m sticking with today. I saw my brilliant insightful oncologist on Monday. I had decided I wasn’t liking her as much as I thought I was, but I’m realising its more to do with her lack of emotion than her counsel. She smiles a lot but her eyes don’t twinkle. Its got to be tough dealing with disease and death daily. So I feel for her, and I decided to cut her some slack. So whilst Im still not really liking her, I do admire her. Hugely. I was frustrated that I wasn’t feeling significntly stronger than the last time I saw her. How constantly fatigued I am. How sore I am. How there is no feeling in my fingertips. How sluggish I feel. How sluggish my mind feels. How podgy I am. She reminded me of the trauma my body, never mind my mind, had been through and continues to go through. Extreme fatigue is a reality for 3-6 months post treatment, and I’m not even there yet. Never mind the extreme reaction I had to the taxotere. I mentioned I wanted to move forward. I wanted to be me again. I wanted to do everything I needed to do this year, so next year could be a better one. She said no. Well, not so bluntly, but basically told me to go away and not rush anything. This is a long term plan. We are managing a long term reality. My ovaries have shut down so an oophorectomy is not necessary. Removing my right breast is a decision I need to make, but right now there is no survival benefit. Had to write that down. No survival benefit. More concerning is the recurrence we’re dealing with appearing in other organs than a new cancer in my healthy breast. No survival benefit in my current reality. More risk, given the trauma my body has been through. I’m not really responding well to the language she is using. So the instruction to me, continue with the lovely Aromasin, monitor the side effects closely, get beyond the fatigue before making harsh calls, see my kind brilliant cancer surgeon in October and her again in November. With numerous blood tests in between. The reminder we are managing a long term reality. Living with cancer. And managing it. Luvverly. So we celebrate NED. We celebrate magic but not miracles. And we move forward. Moment by moment.
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’m trying my damndest to say you go girl as I put mascara on my three eyelashes, two on one side and one on the other. It’s not working so I’m about to text my friends and say if either of you moans about not knowing what to wear I’m going to spew in your faces. Fuck fuck fuck. I have tried on five outfits. All my clothes are fairly classic and not frou frou at all, okay then borderline masculine, and yet in all of them I look like a fat bald chap wearing a dress. No offence meant but just not the look I was going for. Fuck fuck. And then I burst out laughing and never sent my text cos oh for fucks sake. Who really cares. It is what it is. I obviously get the big picture life blessing. But right now I’m having a little picture vanity moment. And to be honest its actually quite liberating because there’s not much I can do about it. I could have got false eyleashes I suppose but they’d struggle to stay pasted on with nothing to cling to, so for what. And I could continue to feel sorry for myself. But for what. Because I don’t feel like me. I don’t look like me. Fuck that. Who cares that my eyeliner smudges everywhere because there are no lashes to stop it from bleeding. Or spreading. Or whatever the right terminology is. Did you even know that was a thing? Me neither. But still, on goes that eyeliner. I’m quite liking this not giving a damn moment. But please don’t tell me I look great with that look in your eyes. You know the one. Just lean over and unsmudge me. It is what it is so help me be me. Because sometimes it’s a little hard. A little hard for all of us to be us in any given moment. So just lean in. Oh and you go girl.