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.
I was asked about my new tattoo yesterday. I haven’t yet understood my need to mark the insights and the awareness that cancer has brought me onto my skin. Maybe its as simple as a need to make my own beautiful statement rather than only see the ugly scars I had no control over. And don’t worry, I do see those as beautiful too now. But you know. And probably also the realisation of the impermanence of it all. So who really cares? Go mad I say. My beautiful refined heart tattoo is shared by all as I hold my hands up in thanks and gratitude and to honour the love in us all. Notice the play on refined and tattoo and see my wry smile. It is no surprise to those who know me that I admire women. I admire all humanity, but I reserve a special spot filled with admiration for the strength and connectedness that exists among women. Those who allow truth to be their story. And we are blessed with many such women in our family. An uniquely strong bond exists between us all. My sister and I are blessed my brother married our soul sister. And my mother is our reluctant heroine. She is beautiful and difficult and funny and delightful and impossible and has an inner strength we all have inherited. And its that strength that binds us and that allows us to know no matter what, we can do and be anything. We all have two daughters. And all six girls are beautiful creatures, both inside and out. And the bond they share is exquisite in its absoluteness. And without this unique and true sisterhood my life would be incomplete and my strength would be diminished. Cancer made us all look up and see once again the fragility of life and the beauty of love. So we decided to honour this beautiful bond and the love we share and we cherish with an exquisitely delicate heart tattoo, connecting us all in a very personal way. We will all always be one and together nothing is impossible. It symbolises the strength our love gives us all. To carry on. To be the change. To honour ourselves and the love we share each and everyday. To know how strong we are. But most of all it celebrates life. And our gratitude for it all. Its a little heart but what it symbolises is huge.
It’s been a month since my last chemo and four short months since my life was thrown into disarray. I’m not sure if the fact that unless I have to I’m not making it out of bed before 11am has everything to do with my body healing from the onslaught that has just been or my mind refusing to deal with my new reality. I am good and positive and so very grateful and my smiles are real but I am struggling a tad. I started taking the Aromasin, despite really resisting it because of the side effects and because, denial. It’s prescribed for advanced breast cancer in post menopausal women. Me. I lied in my earlier post about getting through the grief at losing who I was and having to accept who I really was and am. Well not really because it was a subtle tongue in cheek post and a huge cry for help. And I know I’m not defined by this but it’s my now moment. Then for some macabre reason last week I purchased a book called Without my mum. You got it, the mom dies of cancer at fifty or thereabouts and the woman has to deal with the reality of being a motherless mother. I don’t like that description. And not only because of what it means. It’s just horrid. Could be other ways of saying the same. A motherless mother. Clearly I’m not wishing that on my girls. I mean really how would they cope. That was meant to be funny. So I took my damn tablet. And will for the next 5 years at least. I could simply exercise even more, sprinkle more turmeric, imagine my cancer leaving my body and hope for the best. Or I can be an even more active participant in what is and what will be. So I’ll do both. The only problem is I have to find a way to get out of bed earlier first.
So it seems the crown on my head as the self appointed poster child for chemotherapy has slipped. They tend to do that when we think we’ve got things. Love these continual life lessons in humility and limitations and frailty. I was rushed into ICU on Sunday am with an extremely severe reaction it seems to docetaxel, one of the chemotherapy drugs I receive. Day 10 into my third chemo. It presented on Friday as a rash on the back of my neck which rapidly took over most of my body with hive like welts and was beyond endurable, burning and soooo itchy. Suffice to say I endured, googled it, called oncology on Sat, spoke to the doc on call who was not too fussed mostly because I didn’t have a high temp and gave me some obvious suggestions. Dickhead. (Clearly I was not a fan of his manner). So I proceeded to self medicate with a bicarb bath and coconut oil. Soothed me momentarily. Ok for about 5 mins. Then took some serious antihistamines and antiinflammatories and pain killers too. Did not sleep a wink all night. Oh and nor did B. Happy anniversary angel. Through thick and thin hey? How you loving me now? I couldn’t scratch so I rubbed and smacked and raged and hit my body against anything I could. Including B. Pain seemed a relief from the burning neverending itch. Early am I went to the bathroom and collapsed on my return, into B’s arms. Have I mentioned I love him. He heard me mumble something, probably fuck, jumped out of bed and grabbed me before I could smack the floor. I came to hearing him call angel, angel, angel (he obviously still loves me) with a slight panic in his voice. That was when I started to panic. What the fuck was I doing on the floor? He bundled me back into bed, took my temp. 37.9. I have four emergency chemo cards that all say at 38 you rush to the hospital. Do not pass go. Not 38 yet. So I reckoned, I’d self medicate with the dexamethesone, cortisolsteriods I take before and after chemo for immediate allergic reactions, and this is clearly an allergic reaction although not immediate. See how self sufficient I think I am? But I needed to eat to do that. So B went to get me something to eat. Isn’t he lovely? I fell asleep for two hours. So didn’t eat or medicate. And woke up to a temperature of 38.3. So B took me to emergency, and because I have a beautiful bright red alert card, I was rushed though. I was quite a sight and they admitted me immediately to ICU, where I overnighted for constant observation. My temp was sky high and my blood pressure was scarily low, and my white blood count was high, all that could indicate my body fighting a serious sepsis, not just an allergic reaction. So, I was hooked up to every machine known to man, and had a very eventful, not restful evening due to the cortisol steroids and whatever they gave me. Apparently I was quite agitated during the night. Moi? I suspect it was because I told a lovely nurse (fuck they are all lovely and true angels that walk this earth) off a little. Only because of Bill, a lovely old gentleman who had had surgery on his hip and was completely confused from the anaesthetic so kept thinking he was at home and calling for his wife and daughter and trying to remove his drips and generally and understandably frustrating the very busy ICU staff. But still, Bill was a human. A real sweet human being. In the middle of the night I heard a broken helloo…hello… hello. From Bill. I waited and no one came. We have monitors to press to call the staff but he obviously couldn’t or forgot. Again hello ….hell..o? So I thought fuck it. And pressed my button. The nurse came instantly. She has to walk past his bed and I even heard him saying hehell..o? as she passed. I said to her I’m fine but I don’t think you heard Bill calling and it’s been quite distressing to have heard him throughout the night, he is obviously in much pain. She said yes, she did hear him, and they go to him constantly, but he is so confused and is convinced she is his daughter. I said to her, well, go be his daughter. She looked at me. Said so you don’t need anything. And walked away quite rapidly. I thought fuck maybe I wasn’t sensitive enough to how much she has had to do but fuck it, poor Bill. But I heard her go sit gently with Bill and reassure him and chat and do all those lovely things. Unsung heroes I say. Anyway I slept well after that, never heard sweet Bill again. Or anything. Until 5am when an uppity little phlebotomist came to take blood and insisted she had to use my right arm, as my lymph nodes have been removed from my left arm. Started smacking at my flat to non existent veins. I know well those are the rules. But when your veins are flat to non existent from chemo and your arms are swollen to twice their normal size from some weird reaction and the oncology nurses can’t get in under usual circumstances and the senior emergency nurses couldn’t get in and the ICU nurses couldn’t get in, and believe you me they tried, there is no getting in.They finally found a vein in my left foot (C the humour does not escape me) that they had cannulated and were using and protecting. So believe you me, miss uppity you are not getting in. I obviously didn’t call her that and I was friendly. But she was uppity. And it is useless to try. And hell for me. So you have to use the left foot as have all the others. For blood, for drips for whatever. Blow me down if she doesn’t start smacking at my veins on my swollen right oompaloompa arm again as if she’ll do it. There was nothing about her that inspired any confidence. I pulled my arm away and said I know what your rules say but you are not trying my arm, you will not get in. I have a cannula in my foot for you to use. She definitely flounced off saying well if that’s your decision. I said it is, and actually, I said, speak to the doctor and see what his decision is, or anyone on this bloody ward. Ok so maybe I was a little agitated. She went straight from me to sweet old Bill, and I heard her ask him to roll over. The fucking man has just had major hip surgery for fucks sake. Thankfully one of the ICU nurses rushed over and said exactly what I had thought. Well, not exactly. What a prick, scuse the pun, if she were a man. Anyway, after a bit, Monique, one of the beautiful ICU nurses came to me. Clearly miss uppity had been telling tales. I mentioned I might have been a bit rude to miss uppity who was so officious and really not listening to me. Monique simple bent down on the floor, asked me to dangle my foot over the edge of the bed, and took all the desired blood. And told me not to worry, she is like that. Why they send ‘professionals’ to do the job the ward staff do a million and one times is beyond them. Said under her breath. So bloody agree. Unsung heroes again. Anyway, perhaps I was a tad agitated, but apparently they gave me my steroids very late which does tend to hype one up. I woke up Mon morning in ICU, with no more clarity, but a slightly reduced rash, but still oompaloompa arms and very low BP. Moved me to a private ward to keep me under observation and on all kinds of fluids and antibiotics, did an ECG and bloody hell I don’t know what. So far it has been diagnosed as idiopathic urticaria. Bascially means severe rash caused by no idea. Clearly related to chemo, my depressed immune system but just not presenting as expected. Love being difficult. So the lovely head honcho doc here has me in his care and together with my brilliant insightful oncologist will no doubt come to see the way. If not the light. So I’m here for now, until I agitate them too much. Whilst singing their praises of course. Its just that I know more about me than any one of them. And I’m determined to see this through.
I had a little tantrum yesterday. As in, I don’t wanna do this again. I can and I will and I am, but I really really don’t wanna. It’s those fucking bald spots that did it. And I know I am so much more than my hair, and I know I am blessed to not be terminal, and I’m doing this to ensure I am not terminal anytime soon, but allow me this rant. Rocking the no hair look, and I mean no hair, no eyebrows, no eyelashes, no pubes, yay me, should be a once in a lifetime achievement. Dammit. I know you can all see through the smile, it’s kind of hard to hide the vulnerabilty in my eyes or the tears that well up when I least expect it. And I am brave and I will do what I need to do, so please believe that what I say and what you see is true, but bloody hell, I don’t wanna. It’s cool to be unique, to be different and yes to be the one percent. Apparently that is what I am. A one percenter. The likelihood of cancer recurring after a mastectomy and chemo is one percent. Seriously. Serves me right for always wanting to stand out.
So. Think I’m feeling the trepidation of knowing what’s coming. Welcoming it in a weird way because it’s still my best shot. But this thursday I willingly poison myself again. Time to shave me thinks.
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.
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.