These bloody checkups come round fast and consistently. Thankfully but also with a tinge of what the fuck. Is this how I measure the passage of time now. From surgery date to surgery date from oncologist appointment to oncologist appointment from script renewal to script renewal from blood test to blood test. Bloody hell. So, last oncology check up happened last week. I have reverted to type as in I do it because I must but it never instills fear or trepidation. In the same way I pop my aromasin like its panadol and then wonder why I feel so shite most of the time. Must be menopause, or old age. Anyhoo having a general chit chat with my oncologist, I mentioned B always comments on how I complain of headaches every morning, was wondering aloud at how bad my eyes have got when before I know it, I’m whipped off to have a brain scan. What the fuck? And that wasn’t the worst part, the worst part was that they couldn’t get a fucking vein to play along to inject the contrast dye. I had my scan with tears pouring down my stay very still face. Not due to the pain, nor due to fear, but due to that moment that has happened so much in my life when I am oblivious just before it all goes pear shaped. Was this another of those moments? Thank fuck not. So all I got out of this and its heaps is that, apart from my veins being fucked and that some phlebotomists are so much better than others or that I’m right to wince anytime someone suggests taking blood, but more that I am so justified in living in oblivion. Because each and every moment is a new one and who knows what the next one holds, so live it and love it and rejoice in the not knowing. Your worst fear may not come to pass, so don’t live life as if it will. Live life as if it won’t. And if it does, deal with that then. Oh and if you ever have to undergo chemotherapy and they strongly suggest a portacath. Take it.
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.
So by now some of you may have seen the video B posted of me. It was not a good day but I guess that’s the point. They aren’t good days. They’re the best we can make them days. So whilst I’m so grateful for all the beautiful comments about how wonderful I look, how well I look, they worry me. I don’t want to in anyway trivialise the awfulness, the fear, the yuckiness, the desperateness, the late night bathroom floor moments, the self pitying, the pain, the soreness. It’s hard to share those moments, but it’s easy to share the smiles. It’s not always easy to smile mind you and I think you all see it for what it is, but I just need to make sure you do. A choice. A touch of lipstick, a creamy foundation, some mascara on my fast departing lashes, is my armour to fight the day. I share because I want to give strength to those who are struggling, to show how sometimes a smile, tough though it may be to smile, helps lift the spirit and does give you energy to move forward. That chemo whilst it makes you feel shit, is not something to fear. If even just one person who chose not to do chemo because of fear, fear of being bald, fear of the debilitating side effects, fear driven by others fear, fear driven by others self serving ideologies or conspiracy theories or self healing crap and then leaves it too late sees me and feels hopeful, then fuck it’s been worth it. Healthy living, healthy eating, exercising, reducing stress, being mindful, making the right choices, keeping your system alkaline, living a moderate healthy life are all fucking givens for living. I did it all. I lived it. Yet I got cancer. So, what? Am I a bad person? Do I have many lessons to learn? Fuck yes, we all do. But the one I have learnt is do not fear. It’s what kills you.
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.
In response to a text asking what’s up from a very dear friend of mine. I started to respond nothing. Just waiting waiting waiting. It’s killing me. I chuckled at the irony and was about to hit send, when I thought. Shit is it too soon? Too soon for humour, albeit dark. So I didn’t. But I wished I had, because she would have got it. And it’s honest. And I prefer it to the gentle pity and sadness I feel around me. Please don’t be scared of me and this thing. Or for me. I get why you are and I love you for it, but don’t be. I’m really not. I’m just annoyed I have to find a new label. I was liking the nearly 10years cancer free one. But as B said, stop labelling stuff. And he’s right, I do. I realised that as through my initial fuck my life tears I said to him, I loved that Kate and Jem were the girls whose mom had had cancer, not the girls whose mom has cancer. Really just cos I can’t stand the pity. For me, for them, for us. But I know its source. That damn fear. And I understand it. And I love you all for it. But I release you all from it. It’s killing me.
So where am I? In bed with two gorgeous dogs for company, healing and waiting for my petscan on Thursday and oncologist feedback thereafter. Waiting waiting waiting.
26 December. I unwittingly tried to minimise change in my children’s worlds. Tried to protect them from the one thing they actually needed to learn to deal with. The one constant in the world we know. Change. I blame my control freak tendencies and forgive myself because my intentions were good, my motive was love. So I am grateful, so very grateful that I have learnt that whilst change can be painful, it can also be beautiful. If you embrace it. It is liberating, you grow from it, you learn a lot, not only about yourself but about others. And I most especially learnt what I was capable of. And not to be fearful. I know my girls have grown immeasurably too. I knew it for a fact today when I stumbled across this passage Kate had found meaningful enough in her book to capture. Things do change. And life doesn’t stop for anybody. I am grateful my girls know this. Really know it. And more importantly embrace it. Embrace the adventure of life, the ups and downs. And are learning not to take what they have right now for granted. And I’m grateful I no longer feel guilty they had to face fears I would rather they hadn’t, I now see it as a gift. To us all.
I met a wonderful friend of a friend of mine yesterday. I can’t stop thinking about her. You see she is a warrior woman. A gentle tenacious bright funny warrior woman, who has a brain tumour and was given 14 months to live. She was told the doctors could do no more for her. So she pursued her own path. She is currently on 27 months and counting. She has been dealt many blows by life yet is positive, witty and real. She is self effacing and humble. She is an inspiration and she is my fear. Was my fear. You see she also had breast cancer and a mastectomy and chemo and all the stuff they scare you into having to make sure you are here five years later. She made her five years and had just decided against a big celebration of life party when they discovered her brain tumour, a secondary from her breast cancer. I have no doubt the irony did not escape her. That meaningless silly bloody goal of 5 years that we hold like a beacon of hope, living in limbo, counting the years, months, weeks and days, definitely even if not obviously, believing that on the stroke of midnight of our last day of being 5 years cancer free, we will finally be set free. Free from cancer. Free from fear. And whilst I booted fear a while back, meeting her made me face it for real. She gave me goosebumps and her matter of fact retelling of her tale reduced me to tears. But not for me, but for the wonderful inspiring human being I was graced to be in the company of. I would be proud to be her. I am honoured to have a daughter named Kate just like her. May she grow to be just like the warrior woman I met yesterday. Strong and present and true.
Arienne and I had a chat with an inspiring woman today. An unexpected gift, this chat. She is a fifty something stylish elegant Canadian woman who has lived in Australia since she was nineteen. She is a true example of a woman living her life by her ideals. Living fearlessly. She was driving home late last friday afternoon (she lives in Eumundi which is a bit away from town), when she spotted three young hitchhikers. She noticed them particularly because the only girl was carrying a suitcase. Who hitchhikes with a suitcase, she wondered. And the poor girl was struggling a bit. And there was a storm brewing. And they were carrying a sign for Airlie Beach. Which is over 800kms away. She passed them and then seeing the sky, she turned back. She asked if they knew how far away Airlie beach was. A dutch boy and a french boy and girl, they clearly didn’t. Nor that it was illegal to hitchhike in Australia. She thinks it was because she was once looked after as a young hitchhiker that made her offer. Offer to give them a lift. And a place to stay for the night because of the impending storm. The trio graciously declined and said they would attempt to get a bit further. She gave them her number to call her if they changed their mind. And off she went. They did. And what a perfectly wonderful evening she had. What lovely young graduates with much to share. And even more perfect when the young frenchman said he would like to contribute to dinner as he had some food with him. She was not expecting Tasmanian Salmon. In a backpack en route to Airlie Beach. How perfectly french. She giggled and laughed and remembered as she shared. What a gift to her that evening was. How many of us would have done that? How many of us would have even considered it? The compassion, empathy and concern for others so outweighed her concern for herself. How wonderful to live a life free of fear. How inspiring. What a wonderful gift she gave them. The gift of her, of her time, of her lack of judgement. The gift of kindness. What a wonderful gift she gave us today. By simply sharing.
Approval Addiction is the title of a book my friend gave me to read. She wasn’t trying to tell me something. It’s something we recognise in each other. Seems like such a harsh word, addiction. Am I an addict? I like approval. We all do, if we’re honest. But am I that dependent. That needy. The more I read the more I recognised myself. And I never got past the first two chapters. Because I stopped. Because I’m not. I am not that dependent. Not anymore. I talk a lot about respect and honesty but my other big thing is fear. Fear is the thing. It strangles us. It makes us make the wrong choices or none at all. Books like this exist because of our fear. The world is as it is because of fear. It is what feeds my need for approval. The fear of not being liked, the fear of not being taken seriously, the fear of offending, the fear of being anonymous, the fear of failure, the fear of being ignored, the fear of being alone, the fear of illness, the fear of being destitute. The fear of death. Of late I’ve pissed a lot of people off because I don’t care so much anymore. I can’t pretend anymore so you’ll like me. I like me. And I’m truly not afraid. Maybe the book is not so relevant to me anymore. So, I will not be ending this post with my name is Lianne Cawood and I am an approval addict. Not anymore.