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’m trying my damndest to say you go girl as I put mascara on my three eyelashes, two on one side and one on the other. It’s not working so I’m about to text my friends and say if either of you moans about not knowing what to wear I’m going to spew in your faces. Fuck fuck fuck. I have tried on five outfits. All my clothes are fairly classic and not frou frou at all, okay then borderline masculine, and yet in all of them I look like a fat bald chap wearing a dress. No offence meant but just not the look I was going for. Fuck fuck. And then I burst out laughing and never sent my text cos oh for fucks sake. Who really cares. It is what it is. I obviously get the big picture life blessing. But right now I’m having a little picture vanity moment. And to be honest its actually quite liberating because there’s not much I can do about it. I could have got false eyleashes I suppose but they’d struggle to stay pasted on with nothing to cling to, so for what. And I could continue to feel sorry for myself. But for what. Because I don’t feel like me. I don’t look like me. Fuck that. Who cares that my eyeliner smudges everywhere because there are no lashes to stop it from bleeding. Or spreading. Or whatever the right terminology is. Did you even know that was a thing? Me neither. But still, on goes that eyeliner. I’m quite liking this not giving a damn moment. But please don’t tell me I look great with that look in your eyes. You know the one. Just lean over and unsmudge me. It is what it is so help me be me. Because sometimes it’s a little hard. A little hard for all of us to be us in any given moment. So just lean in. Oh and you go girl.
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’m so not a hero. Whilst I’m blown away by all the beautiful comments due to my oversharing I really am not. A hero I mean. I’m just really trying my damndest to get through this thing intact. Well intact ish. And to be authentic. I don’t believe in the always be positive crap. I mean obviously be positive. But always be positive? What a crock of shit. Sometimes be sad and own that moment. Sometimes be angry and own that moment. Sometimes be vulnerable and own that moment. And yes fuck it, share it with those who love you. Be authentic. No one is happy and positive all of the fucking time. That is just weird and masks you from real emotion. It doesn’t allow people to let you see them in all their ugliness and glory. But let them be moments you allow, acknowledge and let go. Because being happy and positive is so much a better choice. So I choose to love this beautiful messy life we are all blessed to share. I’m a bit of a quote girl and fuck me I think I’m becoming a tattoo girl too. On my list of things to do today is phone my oncologist to find out if my white blood count is high enough so I can get a tattoo. I mean really, who is so deep in la la land. Anyway. A quote my girls have heard ad nauseum, you can’t control what happens to you, only how you choose to respond, is how I choose to live my life. The big word for me in this is choose. We have a choice. That is what sets us apart. And makes us us. Why would you choose to give up? To be fearful. To not be positive. I don’t. So the hair thing is really a choice to live my truth. Saying fuck you to this thing. But yet acknowledging it. My hair will fall out. So this is not a new hairdo but a big huge it is what it is. See the quote thing again? Anyway it’s choosing to be light at a not light time. Choosing not to go into hiding. I wake up and see this strange odd woman looking back at me and I smile. And I feel like a warrior. And why would you not. Not decide to smile. A smile hides a heap of shit but damn it can make you feel good. It’s just a choice. And if that makes me heroic, dammit I’ll own it.
So where am I now. Day 13 of first chemo. They count it in days. Because at roughly certain days you should expect a new kind of hell. So on day 13 I’m supposed to feel slightly less nauseous, more fatigue, the debilitating muscle pains should abate, and my white blood count should improve. All good in the land of hell actually. And just as I feel like me again it’s time for the next round. And that’s next week already. Day 21. When my hair should fall out. Loving the should. Maybe I’ll stay blonde. What a hoot.
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.
14 January. My mother-in-law is an inspiration to me, and to anyone who meets her. At 85 she has more energy, a sharper wit, a better handle on a manual vehicle, a keener mind, is better read and more informed than many her junior. In fact, that’s all got nothing to do with her age. She simply is a woman to behold. And be loved. I am grateful she is in my world, to inspire me daily, to guide me and to give me hope. And always a new perspective.
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.