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.
So last Monday I had my man made nipples and areolae tattooed. Amazing what can be done with a little shading and artistry. Nicole, the beautiful feisty cosmetic tattoo queen, is an artist. An empathetic, caring, beautiful artist who has blown me away with her skill, her confidence, her humour and her kindness. I love my weird, very scarred, oddly shaped yet strangely normal, made up of back skin and pelvic area skin, with different shaped nipples, one ten years older than the other, and with the odd short and curly and absolutely no sensation, boobs. Or foobs some call them. False boobs. One with an implant one without. Ok, not normal at all but I’ve got what I wanted. The smoke and mirrors. At a glance I forget. In fact I remember but I smile rather than grimace. The tattoos are healing and crusting so hopefully all goes as it should without too much touching up required. Okay maybe not loving the foobs, but loving the illusion. But please know as happy as I am, as accepting as I have learnt to be, as often as I show you and I will, I would still rather have your perfectly imperfect breasts. Your old, saggy mismatched boobs. Your breastfed my children and look at them now breasts. Your flat breasts, your large boobs, your inverted nipples, your stretch marks, your droop. This has been torture, not a choice. I will do it again in a heartbeat to be here. But still. Please stop telling me how much better mine are than yours. Even if just to be kind. And remember, as do I, to always count your blessings. Nothing, nothing lasts forever.
My last stay at the hotel not of my choice was as much fun as all the others. Doubly so because no rooms were available at the inn so I shared with a very obnoxious woman. Compassionately she was not dealing with the loss of her breast, I know this because she woke up and said I thought I’d be sadder than this. Her husband and her then spoke nonstop about their tesla, apparently it was broken into, their yacht, he needs more vit D it seems and half an hour on his yacht is not sufficient, their range rover. Anyway, it is annoyingly distracting trying not to hear when people speak as if you’re not in the room, but I felt my waning compassion return when it was apparent his life beyond that room mattered more as she said, stop arranging your social calendar, I just had my tit cut off. Harsh but true. He still only returned at two the next day. My returning compassion wavered a tad though as she treated the nurses like they weren’t there. But I did know two things. One, she just wanted to be seen. I am blessed with the presence of B. And I’m not meaning in a physical sense. I know how much pressure he is under and how much more pressure this puts him under and he is also who I rage against. Yet his presence is unwavering. And second, as my compassion welled up till I couldn’t breathe, she is at the start of a journey (still hate that word) I wouldn’t wish on my worst enemy. Then again, I also relish the unbelievable learning opportunities she and her husband will encounter and hope it enables her to be seen and him to see her. And them to see others. The lesson in it all remains, see each other. Really see each other. And not only when times are tough. But at least then for fucks sake.
So, had my last surgery three days ago. I’m saying last on purpose with my middle finger up. My stylish Canadian plastic surgeon formed a nipple out of the back skin on my breast. It’s all crusty and enlarged and seems to be pointing in the wrong direction, but apparently it will shrivel and I must be patient. Some divots and dents have supposedly been filled in with fat from my tummy. My tummy is sore but I see once again no evidence of fat being transferred. To me my manufactured breasts seem unchanged but I know to give it time. I have a huge slash under my arm so I’m guessing that all wayward tissue has been successfully removed. I am biding my time. But I am done. Apart from some tattooing once everything is healed to complete the smoke and mirrors, I’m done. And in case I forgot all I’ve been through every doctor and nurse I encountered these past few days reminded me as I had to relay my history time and again. Some with dangerous head tilts. Some thankfully not. My goodness you have been through a lot, hopefully this is it. Hopefully it is.
These bloody checkups come round fast and consistently. Thankfully but also with a tinge of what the fuck. Is this how I measure the passage of time now. From surgery date to surgery date from oncologist appointment to oncologist appointment from script renewal to script renewal from blood test to blood test. Bloody hell. So, last oncology check up happened last week. I have reverted to type as in I do it because I must but it never instills fear or trepidation. In the same way I pop my aromasin like its panadol and then wonder why I feel so shite most of the time. Must be menopause, or old age. Anyhoo having a general chit chat with my oncologist, I mentioned B always comments on how I complain of headaches every morning, was wondering aloud at how bad my eyes have got when before I know it, I’m whipped off to have a brain scan. What the fuck? And that wasn’t the worst part, the worst part was that they couldn’t get a fucking vein to play along to inject the contrast dye. I had my scan with tears pouring down my stay very still face. Not due to the pain, nor due to fear, but due to that moment that has happened so much in my life when I am oblivious just before it all goes pear shaped. Was this another of those moments? Thank fuck not. So all I got out of this and its heaps is that, apart from my veins being fucked and that some phlebotomists are so much better than others or that I’m right to wince anytime someone suggests taking blood, but more that I am so justified in living in oblivion. Because each and every moment is a new one and who knows what the next one holds, so live it and love it and rejoice in the not knowing. Your worst fear may not come to pass, so don’t live life as if it will. Live life as if it won’t. And if it does, deal with that then. Oh and if you ever have to undergo chemotherapy and they strongly suggest a portacath. Take it.
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.’
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.