I hate my oncologist visits. Not because she’s not my favourite in terms of warmth and empathy. Well that too. But because immediately it all becomes real again. As much as I feel an observer, there are those moments I feel so nauseous I have to excuse myself as I sit in the waiting room, surrounded by bald heads, decaying spirits and hopeful faces. The smell, the smiling nurses, the ‘to us cancer is personal’ slogan. Still too fresh. Still nauseating. A stark reminder of what was and will be. But what I hate even more is receiving a message the next day to please call the doc rooms to discuss my blood work. I love the ‘all looks good’ calls.. For fucks sake. I know better and I don’t live in constant threat of doom, but in that moment my world crashes. And it takes all that is me to bring myself back to for goodness sake girl, pull yourself together. Anyway, cancer markers good, thank fuck, calcium levels out of normal range, need to be rechecked in four weeks to make sure not indicative of something out of the ordinary. For fucks sake like what. What is ordinary. What is normal. I’m just, today, me one, cancer O. Fuck yeah.
And I got a glimmer of something I liked in my oncologist. Maybe it was the smile reaching her eyes as she told me she found me inspiring and will be using me to encourage so many of her patients who don’t go the whole way. She means no nipple tattoos. Cos they’re obviously not nipples, just like my boobs aren’t boobs. So women just don’t bother. Especially older women. Well I did and its made a heap of difference to me. I like me a little more. In that moment I’m not reminded of the horror immediately. And the moments are all that matter. I like her for seeing me this time.
Who knew my new rallying cry, tits up, would actually work. It seems I am blessed with elastic skin with strong contraction abilities. It is hard to fathom how one month post surgery my left dangly removed implant stretch skin thing has contracted back incredibly. The skin contracts back if there is nothin left to stretch it. Some a lot, some not at all. Mine has. I knew about contraction but seriously. Not much can blow me away but this has. The looks of incredulity on my sister and niece’s faces when I showed them were priceless. Summed up how I felt. They saw me a month ago. And were devastated for me. Fuck me the body is an incredible thing. This time I am happy once again to be unusual. I saw my stylish Canadian plastic surgeon yesterday again. And ate humble pie. He knew. Or in my defence he hoped. And he was so brilliant with me. He also knew me losing it was also about so much more than how awful I looked. It was needed. It was about time and it was cathartic. Fuck cancer sucks. Look my man made breasts are in no way beautiful but they are more symmetrical. (As my baby daughter taught me re my eyebrows and I wish more knew this, they are sisters not twins) And thats all I wanted. And them to look breast like. And no not in a bra, but in real life. The real life I see reflected back at me in the mirror. So more surgery still needed to make a nipple, try fill in some dents, lipectomy under my arm where things have shifted as they shouldn’t and then fuck please we can be done.
Although it never is. Kate had dinner with her friends last night and beautifully they expressed concern over me and does this now mean, no more breast tissue, no more cancer? Unfortunately no. As I’ve bleated on previously, I am the one percent, my cancer came back where there was no breast tissue, where I had had a full mastectomy. So there is no guarantee of anything. I will be pricked and prodded and have to be vigilant with every bump and any fatigue, weight loss, aches and pains. But I plan to do it as I have to date, without fear. It truly is what it is. I will do what I can and what I must. As must we all. Tits up and onwards.
Things didn’t quite go to plan on titsday. Damn I love my witty friends. It seems complications can arise with reconstructions. You’re kidding right. Especially when you’re dealing with one mastectomy from more than ten years ago with radiated flesh, scar tissue from numerous surgeries due to unexpected recurrences etc etc. And one mastectomy from September with no expansion, my call, and extremely thin skin due to the aggressiveness of the treatment. As one should do with a one percenter. Anyhoo, my latismuss dorsi flap used for the initial reconstruction phase on the right had lifted a bit, so needed to be tightened and needed a small implant to fill the space left. There was no space for the smallest implant necessary on the left ‘breast’ to match due to no expansion, my call, on the right, so the old ten year old implant which had to be removed was removed and replaced with some fat grafted from my tummy. Not enough clearly cos I see no evidence of it bar the bruising and the pain. And cos my left previously beautifully but too large reconstructed breast now looks like I breastfed my children with it. I guess I said I wanted what I had. Didn’t mean it literally though. And the right looks like and feels as if it is bolted to my chest. And has no nipple. Basically I woke up a little underwhelmed. Underwhelmed??? What was I thinking. I always preach about managing expectations and the reality of how reconstruction from nothing is different to simply augmenting an existing breast, how its not a boob job, so why the fuck did I believe it was? After all these years and all this knowledge and all the pain and all this growth. That I believed I would wake up with two acceptable looking smallish breast mounds with two acceptably reconstructed nipple like things, finished and klaar. And therein lies the problem. I so desperately wanted this all to be done, I heard what I wanted to hear, and believed that despite my stylish Canadian plastic surgeon making it very clear he wouldn’t know what he could do until they removed my old implant and saw what they could do to match two very different realities, what they would do. I heard him, but I didn’t listen. I just knew he would do what I needed him to do, because it was time. Because surely this I can control when there is so much I can’t. Like any of the past two years and my uncertain future. Fuck me the chick is a slow learner. Nup. Not time yet. So I’m well, healing and waiting to see how things settle before we do the next step. Because there will be a next step. For fucks sake. But the point is, really really is, I am well. For now. And that’s the best outcome ever. What the fuck was I thinking. Anyhoooooooo. Onwards and tits upwards.
It’s time. About fucking time actually. Bizarrely almost 2 years to the day my world turned inside out again. In my last post I mentioned on 13 December we would decide to expand or not. We decided I needed to decide. I decided not to. I want to go back to the size I was. Not who I was because fuck she was a handful, but so were her boobs. And those I liked. Anyhow she doesn’t exist anymore and nor do her boobs. I was told to go away and have Christmas with my family sans expansion and we would reschedule surgery for the new year. So I did as I was told. January was too soon healing wise, and in February my stylish Canadian plastic surgeon decided he needed a break. So 6 March it is. And not a moment too soon. Fuck me these past two extra months carrying around this uncomfortable unexpanded tissue expander in lieu of a boob has been a tad challenging. But also started to become weirdly normal for me. I became strangely ok with this is how it is right now. Every now and again my bikini top would slip down, not much to keep it up, and no I can’t wear a fake prosthesis cos the unexpanded expander under a very thin layer of skin is damn uncomfortable, or I’d catch a glimpse of myself in the mirror, not often I might add, I keep myself hidden from myself. Just so I can forget for a while. You know that out of sight out of mind thing? It works wonders you should try it. Until I notice someone’s glance linger where there is nothing, well there is something, a weird crinkly something, sort of not nothing but not enough of something. Anyway I catch a glimpse, shudder and think damn must get that sorted. That is not attractive. Should really just have gone free and flat. Nope still not there yet. I like me some boobs. Even if they’re not really boobs. Smoke and mirrors y’all. Will be very happy to be a handful again. For now. No Evidence of Disease and a handful. Yay fucking me.
So Tuesday my stylish Canadian plastic surgeon will remove the unexpanded tissue expander and fill the space with a small implant and reduce my left previously reconstructed breast to match. He will also do what he does to fashion a nipple and areole out of the back skin on my chest. The only symmetry I currently have is the symmetry of absolutely no sensation in my chest unless I flex my back muscles, go figure. Now I just want them to match. To sort of look and feel similar, give or take 10 years and much scarring and different surgeons. I’ve given up all semblance of control, sort of, but I love symmetry. My stylish Canadian plastic surgeon reminded me that they can only do what they can do, but he knows I will be happy. Compared to now. His version of trust me I’m a doctor. Well I do and I know I can’t control any of it, but I will be thrilled at this finally coming to rest. Bar a blood test or three. And then I can get my next tattoo. ‘You can. The end.’
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.