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.
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 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.