mindfuck

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.

mine

I have a fetish for a man’s forearm. A strong forearm with slightly curly blonde hairs I can twist my fingers in. It always does it for me. Makes me feel safe, loved, held, invincible, fragile. And it belongs to one man. B is my everything. I could not be or do any of the crap I have to if it weren’t for him. Just holding me. Letting me be me. Being kind, being tough, being caring, being blunt. I am a fucked up case of normal and not normal, with moments of calm and moments of utter insanity. I think we all probably are, some of us just hide it better than others. I have the best gift of all. Someone I hide nothing from. Someone who really does know the dark and the light that is me. Someone who seems to see the light. And quite like the dark. I’m feeling especially maudlin today you see, because today is B’s birthday. And its a crap time for us. And I just felt i wanted to scream from the rooftops how much I adore him. And how much I know I am adored. But I know the girls would be mortified. So I wrote it down instead. You are the only reason I can do this. I see in your eyes the belief in me that makes me know I can. I don’t know why or how we found each other or what made us make it work, but I am grateful every day I breathe that I have you. Not only because of our two beautiful daughters but because I honestly know that any part of my world without you in it, would just not be. You make me be. You make us us. We are us. We are the only thing I know to be truly real. Happy birthday my angel. I love you. And those beautiful forearms.

It’s been a tough five days since chemo. I have desperately tried to remove myself from the nausea that follows me whether I stand, sit, lie or sleep. I hate the way I taste and smell, I hate the way everything tastes and smells. My body aches, I have sores in my mouth, my head feels trapped in a cave with moss in my pores. I feel so tired, it hurts sometimes to talk. But I can feel the easing. I am woman. Hear me roar.

blah

Yesterday was a weirdly comical day with blah moments. We made a new friend Aaron, the inappropriate trauma nurse who was helping out on the chemo ward for the day. He looked more lost than us. He grabbed my chart to go through what was needed, giving me an odd look. The head nurse told him that was the next door ladies chart. Phew he said, you don’t look like a Betty. The start of many chuckles which got us through the day. I had decided to wear my new jump suit. As you do. Gotta feel stylish for chemo right. Except not so when you are attached to a chemo drip and need to wee a lot because of all the fluids flushing the poison throughout your system. What was I thinking. Aaron met my brilliant insightful oncologist and as she left the ward, wheeled his chair behind her, and said, is that your doctor? Smokin’! I think I might have cancer. Barbra our head nurse had the hands of an angel and managed to get my cannula in my fucked up veins from my previous chemo so no surgical port needed, yay me. She kept mocking the patronising tone of the dvd she shared with us showing  me how to inject myself today to boost my white blood cells. You know how I feel about pratronising tones. Oh and Betty’s partner broke her reclining chemo chair. So all in all we fit in quite well. I was sent home three hours later armed with all sorts of anti nausea meds and cortisol steroids to get me through the next three weeks till next chemo. It seems my nails will almost certainly fall off. Some patients seemed to have success with black nail polish, something to do with keeping the light away from the chemicals. So, I’m having my nails done today. Bit like that haircut. Oh and B and I just fucked up the self injecting thing so perhaps we should have mocked the dvd’s patronising tone a tad less and listened more. Ok it was me, B’s beautifully thorough and I’m too impatient. I’ll take his lead from now on. I will. Onwards and upwards.

sucks

So we all know life sucks from time to time. And we all know to be grateful for the non sucky moments because they too will pass. As will the sucky ones. I keep telling myself this as I plan my next months. Yup I am having chemo. Again. A different chemo to the one I had before but chemo. And yes I will lose my hair, and potentially my nails, and my eyebrows and eyelashes and get mouth ulcers and vomit and rashes and nausea and extreme fatigue and neuropathy and generally hate the world. And it all fucking sucks. But I am resilient. I am a warrior woman. And I knew it was coming. I knew it the minute I read that awful word invasive on my pathology report. I knew that a systemic response would be needed. Its the medical consensus of many learned oncologists and pathologists and surgeons and who am I to argue? Anyway I know too much. I know the consequence of winning that argument but losing in the long run. And that’s not an option. Chemo sucks but having cancer sucks a whole lot more. So I am at peace with relinquishing control (okay a bit) and being guided by those reknowned for being cautious, sensible and non aggressive in their approach. And deep deep down I know I’ll sleep better knowing we are doing what we can.