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.
You good? A question I have been asked a few times this past week. By those who don’t know me well but can see by my bald head that life clearly has gone a tad awry for me but don’t know how or why. Quite like that question. Asks everything yet really expects nothing in return. Allows me to say yip I’m good. I don’t need to answer how I am because then I’d need to think about it and I don’t have the energy. And to be honest the relief in their eyes when I say I’m good is almost palpable and so beautiful I feel good. And so it goes. And in the greater scheme of right now I am good. Really good. The dust is settling on the mayhem of the horror that was. I officially have no evidence of disease, my hair appears to be sprouting, albeit not quite uniformly, but hey its hair. But in the lesser scheme of things I am tired, so very very tired and sore, so very very sore. The cancer meds are not easy to take. The upside is I get to nap most afternoons. The downside is I’m starting to plan my days around those naps. The upside is I’m gaining some clarity in those quiet moments. And there is no downside. Disease is a funny thing, it shocks you awake in a weird way. Facing your mortality opens your eyes in ways you don’t want to see. But also do. It makes you feel foolish for thinking things mattered when really they didn’t. It makes you so very grateful for seeing what matters, for knowing that humanity matters and for how blessed you are and encourages you to let things go with love but with relief. Somethings and some people are happily just not for you. I am me and I am living my truth. Because sincerely life is so very precious and honestly I have no more fucks left to give. For stupidity, narrow mindedness, bigotry, indifference, xenophobia, insincerity, fear and hatred. You go your way. I’m good with that. Really really good.