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.
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.
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.
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.
There is no magic number. A chemotherapy regimen is recommended based on you, your cancer, its stage, its idionsyncracies. And four combined cycles of taxotere and cyclophosphamide, so eight in total, our learned friends have discovered is optimal in most cases (can I stop proving I’m not most already) to achieve the desired result in cancers like mine. But four is not a magic number. I’m believing for me it’s three. And the irony of my love of all things symmetrical is not lost on me. So, I saw my brilliant insightful oncologist yesterday, and dammit she is brilliant and lovely in her slight emotionless yet very present way. We discussed much and then she sat back and said, right now I want you to just let the dust settle. For two months just let the dust settle. Is it only me who imagines the sparkles in that dust? I’m letting that magic dust settle. My body and my mind and my family were thrust into some fucking mammoth grinder the past four months with no warning, no reprieve and no breathing space. So for two months we breathe and I heal. I can do that because my brilliant insightful oncologist told me to. The reaction I had was a delayed hyper sensitivity to taxotere on a scale she has never seen. The risk of giving me more could result in life threatening internal swelling and long term tissue damage I’m not signing up for. The other option could be to start me on a new chemo regimen, from scratch. But, both my brilliant insighful oncologist and I know that will not be my reality. And she is comfortable with that. And so, so am I. Because my cancer is hormone receptive the past 12 years I have done everything I can to block all estrogen. Fuck has it been 12 years since my first diagnosis. Really? Can you blame me for being bored? But hey, I’m still here. Anyway, despite various meds I have been on to do this, and even very rudely been forced into early menopause, it came back. Or it never left. See, mindfuck. So I’m on a new kick ass adjuvant therapy the goal again, 5 years. 5 years NED. Aromasin, an aromatase inhibitor used to treat advanced breast cancer in post menopausal woman. Yup, thats me. Excuse me whilst I quietly upchuck, haven’t we been here before? Anyway. I’ve noticed the use of the acronym NED more and more. So, I haven’t been cancer free, duh, the past 8 years, I have just been 8 years NED. No Evidence of Disease. Slow learner, or just my denial coping strategy? So, I get that I live with cancer. And am happy with NED. And remain vigilant. And healthy. And that there are no absolutes. There are no one hundred percents. There are no guarantees. But there is the beautifully messy thing called life. And I love every last messy bit. And once the magic dust has settled and I am more me and less embroiled in this mindfuck. We will decide the rest. In the meantime, last chemo celebrations are way overdue.
15 January. My final grateful, gotta love a leap year. I am grateful for a final contemplative moment. For a weak wireless signal, so I found myself on the balcony desperately seeking connection. To no avail. But an imperfectly perfect end to my 366 gratefuls. I am grateful for real time and real connections. They are all that matter. And for them I will never ever stop being grateful. For love. And for this glorious imperfect life.
13 January. My friend Leigh. I am grateful for my friend Leigh. For my pioneering friend Leigh. She is a teacher, a sage, a leader, an inspiration. I am grateful for her honesty, her bravery, her sharing, her ear and her forever friendship. She has lived through some serious shit, and that smile is always there. She has taught me there is always a way. To fok maar voort. With style. And grace. And dignity.