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.’
Bloody hell this healing process takes fucking forever. Its been two months now since my second breast was removed. It’ll be three months when all is healed so the tissue expanding can happen to make space for an implant if I so desire. Haven’t decided yet. Have been dealing with ongoing seroma, ‘a build up of fluids in a place on the body where tissue has been removed’. I seem to have a lot of it. Two weeks ago my stylish canadian doc aspirated 150mls. And i was left with a little pouch containing nothing but a tissue expander and some lat tissue. Hmmmm. Not sure that’ll make a boob. Latissimus dorsi flap breast reconstructions are traditionally done using your own tissue and an implant to give a more natural feel and the majority of patients (amputees, survivors, thrivers? Fuck so confused by what term to use) are happier longer term than those with only implants. At this point I start to think what are you bleating about you’re alive. Survivor guilt is a thing. But never let it negate you and your fears, issues, idiosyncracies. They are valid. Ok, note to self over. Annnd I have been ‘happy’ with my existing reconstructed breast like mound thingy. Just don’t remember it taking this long to heal, but then again there has been the onslaught of chemo etc. Reckon this body is holding up the middle finger right now. Anyhoo, the continuing fluid build up means it looks like I’ve got a boob still. Bit flippity floppity but oh well. Its quite handy when you want to go to the beach. That sounds flippant but its not. I have my very dear friend to thank. I was hiding as I had been, albeit knowingly, when she bullied me into her car and out for a coffee on the beach a couple of weeks ago. The sun was shining. It was glorious. Everyone was out and proud in their cozzies and worshipping the sun. My happy place. I was feeling grumpy and scarred and flat and confused. So she took me cozzie shopping. Fuck me. Not many people who can know what I need when i don’t even know. It all felt so normal as we found “busy’ padded tops that would disguise the fact that I was mishaped and that one side was primarly empty. I needed help doing my top up and she helped me. It was all so easy. I didn’t flinch once. She made it so. It was only days later that she admitted she had found it so emotional seeing me standing there asking if this is ok, with my scarred semblace of a boob, that it took her breath away. She hid it well. And it helped me so.
So on 13 december we start expanding or not. Then we schedule phase 2 and 3. Insert implant or not. Remove implant from other breast and reinsert new one. Or not. Reconstruct nipple from bit of back skin on breast like mound filling in for my areola. Tattoo both nipples and areolea to match. Et voila. Oh ja and follow up blood tests and oncologist check up. Just to keep it real.
There are a few things I want to get off my chest. Oh fuck, that’s hilarious. I really really didn’t mean that. But you have to admit its apt. Its this October pink thing. The breast cancer awareness thing. I have supported it resolutely every October and every year get involved. And this year I will too. Not by buying completely inappropriate products with a pink ribbon on them and most definitley not purely for the fund raising, well that that even gets where it is intended, but more for the solidarity. I see hope and comradeship and comfort for those who need the support a group brings. I see the opportunity for some to share their love and admiration for those they know who are doing it tough. I see how those who feel hopeless in the face of it, feel they are doing something. I see its beauty in the huge strength it gives those going through breast cancer knowing they’re not alone. And I know the money raised does so much good. So much of the pink effort is about awareness and early detection of breast cancer and I get that. There is hope. It becomes about saving your breast and not losing your life. And that we can face. Save the tatas. Most of the money raised is allocated to research into early breast cancer. And by that I mean anything other than metastatic breast cancer. Breast cancer that has spread to other organs in the body. Everyone who dies from breast cancer dies from metastatic breast cancer. It is stage 4. There is no stage 5. When I was first diagnosed I was non invasive stage 0, but with a high grade tumour. Then following my recurrences ended up invasive stage 3. An aggressive little bugger. The cancer had broken out of my breast and was on the move but hopefully we got it all before it settled anywhere. Before it metastisized. We live in hope. The reality is that 30%, yup I’m using stats, of early stage cancers will become stage 4. Will metastisize. And all breast cancer deaths occur becasue of metastasis. In fact most with stage 4 die within 24 months of diagnosis..
‘Despite these stark realities, the popular breast cancer fundraising movements give on average only 2% of their research funds to researching metastasis. Instead, their primary focus is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those facing the ultimate death sentence of stage 4 breast cancer. And while only 6% – 10% of initial breast cancer diagnoses are metastatic, 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die.This does not need to happen. Many metastasis researchers believe that metastatic breast cancer could become a chronic, rather than terminal, disease, if only there were more money to do the research necessary to develop effective treatments’. These are the words of Metavivor. An organisation driving this worldwide.
So when you support any of the cancer fund raising initiatives, ask how much is being allocated to metastatic breast cancer. Or donate to Metavivor. I reckon by now we all know about breast cancer. To the point its almost become wallpaper. We are desensitised by its proliferation. I reckon most of us are over the pink. Or maybe thats just me. We all know about early detection being key. So don’t be a dick get tested. And insist on an ultrasound. But irrespective 30% will still die. And thats not pretty and that’s not pink. Discussions need to change. Things need to change. And selfishly I’m hoping it might happen in my lifetime.
I was googling, I mean researching, breast reconstruction options, pros and cons, longevity of autologous reconstructions sans implants etcetera etcetera as you do and did a double take at the word amputation. Holy shit. I just had my second breast amputated. Fuck, that sounds so much worse than removed. And no doubt I felt the same 13 years ago, but I forgot. I was liking the dealability of removed. Funny how we frame things to make them more palatable. More doable. And why not? Whatever it takes, just so long as you know you can only lie to yourself for so long. Anyway, my right breast has now been removed. I miss my nipple more than I miss my breast. Weird feeling nothing. But at least now I won’t have a single nipple stand anymore. But the complete lack of feeling is a tad disconcerting. I thought I would like the symmetry of nothingness. No doubt I will get used to it. Its been two weeks since my amputation, couldn’t resist, and I am recovering well. I have been extremely well behaved and not done too much at all. I also haven’t looked too closely at myself because it looks like shit. Sorry to my stylish Canadian plastic surgeon, and he is, but it does. I know its only phase 1, but whats with this wad of tissue sitting under my armpit? And that ain’t vanity, because I do know how much worse it all could be, so I am so very grateful to be at this stage in this phase of my cancer story, its just fucking uncomfortable. What is this though? If not vanity. A need to fit in? To feel whole? Why am I reconstructing my breasts. Why do I feel I need these false mounds on my chest to feel normal. They’re not normal. They’re also not me. Actually they are if we whip out and don’t add any implants, they’re just my back on my front. Which is all kinds of fucked up that I love it. Nothing is ever as it seems. And you all know I’ve always wanted to be flat chested, so why not now? Why am I putting myself through this hell again, being butchered again, so I can feel like a woman? I don’t need false breasts to feel like a woman. What even is a woman? Did I just say that? Get a grip Cawood. Anyhoo. My breasts don’t make me, no more than my hair made me. And I need them less than I did, to feel like me. Its called growing up I think. Fuck, Lianne couldn’t you have had this epiphany two weeks ago, before they slashed into your lat muscle to recreate part of a breast? So I’m sitting here with what they call a “shark bite” cut, evidence of where part of my right lat muscle was cut and flipped under my arm to form a breast mound, with back skin filling the hole where my nipple and areola were. They also inserted a tissue expander as I’ll need an implant too as phase 2. So next step is to remove the tissue expander and insert an implant, and then recreate a nipple. Phase 3. I remembered I had forgotten to ask my stylish Canadian plastic surgeon how. In keeping with my going with the flow stance. Me very consciously walking my talk. My control really hasn’t altered any outcome thus far, soooo. Anyhow, apparently he manipulates the back skin, that I currently have on this weird swollen breast like mound into a nipple like shape, so no more harvesting of tissue from elsewhere. Unlike last time. How lucky am I. Seriously despite my tone I am. I really am and if nothing else I’m going for some semblance of symmetry here and i love symmetry. The doc is happy with me post surgery, was a bit of fluid build up, the scar is puckered, i am fucking swollen, but hey you’re doing so well, he said. And I am. Did I also mention pathology was all clear.
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.