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.
Five years is a long time. Five years is a great time to be cancer free but not so sure if it’s a great time to have been away from where I come from. Congratulations have been offered and accepted as my family and friends all knew I was only staying for two years. OK, so they and I knew I would stay longer but happily went along with my self delusion because they all knew it was what I needed. It’s not a great time, because it is a long time and so much and so many people have changed. The gap we seem to have left for some has diminished. And that was inevitable but also sad. But actually it is also great. Because it has helped me on my journey. To truly understand impermanence. And attachment. I have definitely learnt the lesson I have oft referred to in my musings, the gift I have finally accepted. The acceptance of change. Which often is loss. I think after 5 years you get a real understanding of what mattered, what matters, of who matters and of whom you matter to. And that it’s all good. I can now smile at this journey, from the absurdity of the first visit home to the authenticity of this visit five years later. Five years is a long time to be away from where I come from, but a great time to grow.