bloodypink

There are a few things I want to get off my chest. Oh fuck, that’s hilarious. I really really didn’t mean that. But you have to admit its apt. Its this October pink thing. The breast cancer awareness thing. I have supported it resolutely every October and every year get involved. And this year I will too. Not by buying completely inappropriate products with a pink ribbon on them and most definitley not purely for the fund raising, well that that even gets where it is intended, but more for the solidarity.  I see hope and comradeship and comfort for those who need the support a group brings. I see the opportunity for some to share their love and admiration for those they know who are doing it tough. I see how those who feel hopeless in the face of it, feel they are doing something. I see its beauty in the huge strength it gives those going through breast cancer knowing they’re not alone. And I know the money raised does so much good. So much of the pink effort is about awareness and early detection of breast cancer and I get that. There is hope. It becomes about saving your breast and not losing your life. And that we can face. Save the tatas. Most of the money raised is allocated to research into early breast cancer. And by that I mean anything other than metastatic breast cancer. Breast cancer that has spread to other organs in the body.  Everyone who dies from breast cancer dies from metastatic breast cancer. It is stage 4. There is no stage 5. When I was first diagnosed I was non invasive stage 0, but with a high grade tumour. Then following my recurrences ended up invasive stage 3. An aggressive little bugger. The cancer had broken out of my breast and was on the move but hopefully we got it all before it settled anywhere. Before it metastisized. We live in hope. The reality is that 30%, yup I’m using stats, of early stage cancers will become stage 4. Will metastisize. And all breast cancer deaths occur becasue of metastasis. In fact most with stage 4 die within 24 months of diagnosis..

‘Despite these stark realities, the popular breast cancer fundraising movements give on average only 2% of their research funds to researching metastasis. Instead, their primary focus is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those facing the ultimate death sentence of stage 4 breast cancer. And while only 6% – 10% of initial breast cancer diagnoses are metastatic, 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die.This does not need to happen.  Many metastasis researchers believe that metastatic breast cancer could become a chronic, rather than terminal, disease, if only there were more money to do the research necessary to develop effective treatments’. These are the words of Metavivor. An organisation driving this worldwide.

So when you support any of the cancer fund raising initiatives, ask how much is being allocated to metastatic breast cancer. Or donate to Metavivor. I reckon by now we all know about breast cancer. To the point its almost become wallpaper. We are desensitised by its proliferation. I reckon most of us are over the pink. Or maybe thats just me. We all know about early detection being key. So don’t be a dick get tested. And insist on an ultrasound. But irrespective 30% will still die. And thats not pretty and that’s not pink. Discussions need to change. Things need to change. And selfishly I’m hoping it might happen in my lifetime.

 

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epiphany

I was googling, I mean researching, breast reconstruction options, pros and cons, longevity of autologous reconstructions sans implants etcetera etcetera as you do and did a double take at the word amputation. Holy shit. I just had my second breast amputated. Fuck, that sounds so much worse than removed. And no doubt I felt the same 13 years ago, but I forgot. I was liking the dealability of removed. Funny how we frame things to make them more palatable. More doable. And why not? Whatever it takes, just so long as you know you can only lie to yourself for so long. Anyway, my right breast has now been removed. I miss my nipple more than I miss my breast. Weird feeling nothing. But at least now I won’t have a single nipple stand anymore. But the complete lack of feeling is a tad disconcerting. I thought I would like the symmetry of nothingness. No doubt I will get used to it. Its been two weeks since my amputation, couldn’t resist, and I am recovering well. I have been extremely well behaved and not done too much at all. I also haven’t looked too closely at myself because it looks like shit. Sorry to my stylish Canadian plastic surgeon, and he is, but it does. I know its only phase 1, but whats with this wad of tissue sitting under my armpit? And that ain’t vanity, because I do know how much worse it all could be, so I am so very grateful to be at this stage in this phase of my cancer story, its just fucking uncomfortable.  What is this though?  If not vanity. A need to fit in? To feel whole? Why am I reconstructing my breasts. Why do I feel I need these false mounds on my chest to feel normal. They’re not normal. They’re also not me. Actually they are if we whip out and don’t add any implants, they’re just my back on my front. Which is all kinds of fucked up that I love it. Nothing is ever as it seems. And you all know I’ve always wanted to be flat chested, so why not now? Why am I putting myself through this hell again, being butchered again, so I can feel like a woman? I don’t need false breasts to feel like a woman. What even is a woman? Did I just say that? Get a grip Cawood. Anyhoo. My breasts don’t make me, no more than my hair made me.  And I need them less than I did, to feel like me. Its called growing up I think. Fuck, Lianne couldn’t you have had this epiphany two weeks ago, before they slashed into your lat muscle to recreate part of a breast? So I’m sitting here with what they call a “shark bite” cut, evidence of where part of my right lat muscle was cut and flipped under my arm to form a breast mound, with back skin filling the hole where my nipple and areola were. They also inserted a tissue expander as I’ll need an implant too as phase 2.  So next step is to remove the tissue expander and insert an implant, and then recreate a nipple. Phase 3.  I remembered I had forgotten to ask my stylish Canadian plastic surgeon how. In keeping with my going with the flow stance. Me very consciously walking my talk.  My control really hasn’t altered any outcome thus far, soooo.  Anyhow, apparently he manipulates the back skin, that I currently have on this weird swollen breast like mound into a nipple like shape, so no more harvesting of tissue from elsewhere. Unlike last time. How lucky am I. Seriously despite my tone I am. I really am and if nothing else I’m going for some semblance of symmetry here and i love symmetry. The doc is happy with me post surgery, was a bit of fluid build up, the scar is puckered, i am fucking swollen, but hey you’re doing so well, he said. And I am. Did I also mention pathology was all clear.

waiting

Don’t you hate how when you reach a place, a decision, mindfully and finally peacefully, it suddenly gains its own momentum? Mocks you for ever thinking it was on your terms.  To back up a bit I last shared 4 months or so ago after a previous hiatus and promised I hadn’t been hiding. And I hadn’t. Really. I’d just gone in. But these last 4 months I’ve been consciously out,  busy filling my life with normality.  I realise now I’ve also been waiting.  But less consciously.  Waiting to feel strong enough to give my kind cancer surgeon the nod to cut away my remaining breast. And an equally kind plastic surgeon the nod to try his best to recreate some semblance of feminine normality from nothing. Nothing. Everything has to go. Breast tissue, skin, nipple. Everything. I’ve been waiting to feel peaceful about deciding to deal with the what ifs rather than the what is for the first time in this fucked up recurring reality. And I’ve been waiting to feel peaceful about doing what I know I must.  The irony is not lost on me that my first cancer surgeon 13 years ago advised me if she were me she would have removed everything.  To not live in fear of recurrence. Although she admitted she’d never been faced with that decision. You never know how you’ll be until its you. And I hope it never is. So I chose to deal with what was. What is. And have continued to. And I have no regret. I refuse to be led by fear. To live in fear. Who knows how different I would have been had I done something I was not ready to do. Or felt was not necessary to do. I have never been overtreated.  We’ve just done what is reasonable based on what we were presented with. The fact that my cancer isn’t reasonable and that I insist on being a one percenter, noone could have predicted. It could have been different. It also could have been worse. So now my waiting is over. I have peacefully come to the place of readiness both physically after the toll of last year and mentally, to move forward. To do what is reasonable. And now necessary.  So I went to see the plastic surgeon my kind and committed cancer surgeon recommended, and he was lovely. On the same day I had a bone scan. An ongoing follow up to see if there is any metastases in my bones. You really don’t want that. And thank fuck there isnt any. It seems that aborted chemo did its bit. I also had another CT scan and damn if those pesky lymph nodes in my right breast that bothered the radiologists last time, are still bothering them. Not my reasonable doctors so much. So nor me. But. Once we open you up to remove your breast, we can check them out with pathology and do what is necessary says my reasonable doctor. So the momentum has started gathering. Its becoming a little more urgent. And it seems the plastic surgeon is in huge demand, which I suppose is a good thing (therein lies another conversation altogether). It seems my surgery is somewhat complex, go figure, due to previous treatment and surgeries, so my cancer surgeon wants to work with someone well versed in autologous reconstructions.  The only time my cancer surgeon, my plastic surgeon (don’t you love the ownership) and the anaethetist they like to work with are available together in the forseeable not too distant future is the 5 September. Not distant enough. Much sooner than I had planned. I’ve got stuff on. Fuck. So much for mindfully and peacefully. Shit now needs to get done.

Anyhoo. I thought I might share this next phase too. Not just because it helps me, but it seems there are those who think a mastectomy is a boob job. Best I tell them otherwise.

dump

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.

love

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.

now

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.

whoopsidaisy

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.