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.
I really have grown. A growing up I would have chosen differently but hey. Life does its thing when we are asleep. I’m just grateful I woke up. I cut all my hair off on Saturday. Well 30cms off so I could donate it to kids for cancer. It had to be on Saturday because B needed to be there and I had to do it before chemo starts. And B is away this week. So I had to do it quickly and without really thinking too long about it. And it didn’t bother me. Well apart from looking far too mature, and perhaps there is a message in there somewhere. First time round it bothered me a lot. My hair was my security. It made me me. But I did learn I was so much more than my hair. It was just something I could control. This time I chose to cut it off with knowledge and no fear. And still, those scissors were like a shard piercing my this isn’t really happening again protective shell. Just for a moment, I hated reality staring back at me. But I’m ready for this. And I need you to be too please. I’m getting far too many head tilts lately. All my hair on my body will fall out. I am not fearful. Yes I have heard about cold caps. Yes I am glad, really I am, that your mother’s aunt’s second cousin had chemo and kept all her hair. Unfortunately you know too little. Or fortunately. Not all chemotherapy is the same. There are different regimens used depending on you, your type of cancer, your grade, your stage, your history. How you respond to treatment is also so very personal and enterwined in all of the above and who you are. There are many different types of breast cancers too, and treatment depends not only on stage and type but on whether it’s hormone receptive or not, BRACA postive or not, HER2 positive or not, invasive or not, advanced or not blah blah blah. Mine is advanced. And invasive. And hormone positive. I think you get the gist. I am not fearul of losing my hair. All my energy will be directed at healing and saving my life not at saving a few strands of hair. I vomit at the thought of all that fear. I truly feel so light and empowered right now, which is exactly where I need to be. And I do love the care behind your suggestions, but if there is none, please fuck off.
Thursday I start. Every 21 days. 4 cycles. Could be worse.
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.
I don’t have a lot of friends. Real friends. And I choose it that way. I am social and gregarious but yet guarded and uncertain. Fuck off, I am. Even more so in this wildly accessible world we operate in. I seek authenticity. I hurt easily. I can shut down in an often imperceptible way. I expect a lot and I give a lot. My best friend in the whole wide world is B. He holds my heart, my soul, my fragilty, my me’ness with such tenderness and such honesty. He softens me in ways only he can see. And me him. I trust him with my thoughts, my heart, my truth and my life. I choose him above all else. And then there’s my family. Who know the worst and the best of me yet love me still. And I them. Deeply. But it’s the friendships forged over life stages that didn’t need to survive or count that I want to honour. That handful of beautiful exquisite fuck the world women who see deep into my soul and past the pretense. We are all so different, such different ages, we live all over the world, we are connected by blood, by marriage and by nothing at all. But something binds us. Something so raw and honest. Something called truth. I need you to know I see it, I am grateful for it, I protect it and I thank you for it. Especially right now. Fuck, it keeps me sane.
I have to admit I’m a little bored. I’m supposed to be packing and I’m sitting here researching the side effects of docetaxel and cyclophosphamide. It’s not what I’m reading that’s boring it’s actually quite interesting. Fascinating even. But nauseating. Truly nauseating for those in the know. It’s the fact that I am reading it that bores me. And that all I think and talk about right now is this insiduous, (I like that word C), fucker. I am bored at being here again. I am bored that my family are here again. Seriously if I need to be the poster child (I uses the term lightly) for anything, did it have to be this? And I don’t mean to be ungrateful, I really do get the goodness that can come from crap. And that crap happens. And what sets us apart is how we handle the crap. And that my determination to be positive (hate that word sometimes, because really what chioce do we have) and my strength to do what I must could help others. And I am so grateful for that. But I’m bored. And yes, probably mildly depressed.
I met my oncologist. She is brilliant by reputation. And I found her delightfully as insightful as she was brilliant. My brilliant insightful oncologist has unfortunately not ruled out chemotherapy. She is mindful of not overtreating nor undertreating me. So I am to be discussed and reviewed further. Love all these brilliant minds being a tad baffled by me. I think. Final decision to be made next Thursday. If you believe that you’ll believe anything. Anyway I’m not scared. It’s awful but I will do whatever I need to. And anyway I need a haircut.
I promise it’s not you. It’s me. I know sometimes it must be hard to be there for me when I block you at every turn. Especially your offers of companionship. You see when I’m alone I don’t need to be brave for anyone. It’s that brave face for the world thing. For my kids thing. Because what choice do I have thing. And it’s not a lie thing. I am that brave face you see. Because it’s in those moments within me that I find the strength to be the person I need to be. It does help to share but some things just can’t be shared. This cancer fight is fought late at night when I rage with the world and cry my ugly tears. And not because Im fearful. I know my outcome is good. I know we got this early enough and we will manage it. But the worst thing already happened. It came back. Or it never left me. And that is what I need to face on my own. With your help. But mostly on my own. It’s where the fight is fought and won. But please don’t stop offering. I love you for it. And sometimes I do get lost inside my mind.
So for those who asked, preliminary biopsy results of my right breast were good, but they aren’t all in. They’re being processed further? Whatever the fuck that means. Anyway I remain quietly confident taking my lead from my brilliant kind surgeon. Today I meet with the oncologist, who my brilliant kind surgeon promises will have all my results, so we can agree how to keep this fucker away. Or blow it to smithereens.
The weirdest thing, well one of the weird things about this little detour is that I felt fabulous. That’s the odd thing often about this cancer thing. If it’s caught early enough there are no symptoms. No visible, palpable, anythings. Now I feel like a sick person. Not only because I have been cut, pricked, prodded, put under too many times, scanned, ummed and ahhhed over. But because I keep getting asked if I’m ok, because I look grey. Funny how when someone asks you that, you instantly feel grey. Feel sick. Feel like a cancer patient. It’s kinda what I meant with that pink rant too. If you are surrounded by sadness you become sad. Well not today. Today it’s friday. And I’m going to lunch. To celebrate life and vigilance. Hopefully my red lips hide the grey.
I received a huge parcel yesterday from the breast cancer network australia. A my care kit. Included was a berlei bra with inserts to fill any gaps, a handy reference guide to cancer, how to live with cancer, what your friends need to know, what your partner needs from your friends, a diary to record every awful moment, some pink sweets. Oh did I forget to mention it was all pink. Very pink. With a floral pattern. And so meaningful. And filled with pictures of women with that look in their eyes. The look I have grown to hate. The woeful we are so sad look. I do understand how packages like this make many women feel not alone, cared for and understood. But there is no way it doesn’t also make them feel pathetic and justifiably needy. You start to be that sad person. Especially now you have unwittingly signed up for this pink club full of well meaning people who feel sorry for you. I just hate the way it is packaged. And I don’t mean the pink, although I hate that too. I mean the whimsy, the tone of voice, the feeling of weakness, the we’ll hold you up, the message of you can’t cope on your own with this. Mostly because its misleading. You have to cope on your own. You have to find your inner strength. You are so capable of doing it if you are allowed to. Without sinking into this pit of pink. Every single breast care nurse, therapist associated with breast care, breast cancer counsellor that I have encountered along the way has looked at me that same way. Head slightly tilted, pity and sadness in their eyes, as with a slightly hushed voice they ask, how are you doing? And I feed their need. I smile wanly. I don’t cuss and I don’t laugh. I get all needy, wondering how soon they’ll leave. Whilst I respect the selfless thing they do I do wonder how selfless it is really. It seems to help them by feeling they’ve helped me so I let them believe they have. But they haven’t. Or maybe they have. By making me even more resolute. To not be the person they think I am. How novel would it be if one of them anyone one of them so enterwined in the breast cancer care bullshit looked me in the eye with a glint of steely humour and said, well this fucking sucks doesn’t it? I wonder if I can send my pink package back with some suggestions where the funds could be better spent? I far preferred the other package I got from my very dear friend. My fuck cancer packet filled with goodies to take along to keep me company as I wait wait wait. And not only because it was predominantly black.
I wrote an earlier post which I deleted because I was angry when I wrote it. I guess the only message I really wanted to convey (but it was lost in the rant), is be kind. This again. Think before you speak. Especially to young women whose mothers have just been diagnosed with recurrent breast cancer. Don’t be ignorant. And don’t assume I am. Or they are. It’s truly unfortunate that they aren’t. But it’s condescending to assume they are.
But. This post is a good news one. Goodish. Preliminary PETscan (I’ll write it in capitals because I don’t mind it having power today) results show no areas of concern elsewhere in my body. But. There is now evidence of what appears to be an ‘internal mammary lymph node mestasteses’ in my right breast. Whaaaat? Anyway, now I have to have another fine needle biopsy and CT scan early next week to check it out. Then armed with all this fucking knowledge, the medical oncologist will decide what next. With me of course. But right now, it’s mostly good news. Just with a damn but.