Radiotherapy Treatment #5: August

August is my least favourite month of the year. 

It shouldn’t be. 

It’s the month both my parents celebrate their birthday’s. The month Alex’s dad was born and also the month his wise and beautiful Buba came into this world. 

But more recently it became the month I lost both my maternal grandparents and being from the Southern Hemisphere, it is the last month of winter. A season I am not that fond of now that I seriously lack my own winter coat. 

Winter coat aside, the main reason I am not a fan of August, is because of a dream (or maybe it was a nightmare) I had about 5 years ago. In 2010 we were living in our tiny, mouldy one bedroom basement flat in Maida Vale. For us it was just perfect. The location was central and the neighbourhood was great, friends and pubs nearby. But one morning in early January that year I woke in a lather of sweat only to recall a dream I had from the hours before. I was Angelina Jolie (she has been a dream theme that has continued during my disease in many different forms). 

The dream was very clear and simple. I had a similar tattoo to the one that she has on her arm listing out the dates, longitude and longtitude points for each of the places that her children were born. Mine was slightly different. I had only one date that I remembered. The others had been scribbled out. It was my date of death. 13 August 2013. 

I kept this to myself for a few years only telling a few people mainly because I thought I was crazy and I didn’t want to think about it. But as the date approached the more and more apprehensive I became about it and for my family. I changed dates of flights, appointments and importantly (in my eyes) the date of my minor surgery I was scheduled to have ‘clean my tubes’ out. After three years of no success, I bit the bullet decided I would see an actual gynaecologist about my inability to fall pregnant. The GPs up til now had said we only have half the picture with what’s going on with Alex, so it was time to have my side investigated. I would need to have a more invasive test. For me I feel like this is when my clinical trial experiment all started…. All scheduled on the date of my death???? Well I fixed/controlled that and changed the date quick smart! The OCD me!! I changed the date, making sure it was the day before allowing the 13th to be a recovery day, which suited me fine. I would be safely wrapped in bed not able to go anywhere….It was a definately a forced change in my trajectory as Zoe would say. And, in my mind I haven’t worked out if I was not meant to (or ready) to go down that motherhood path (which began within 3weeks of the surgery) which set me travelling down this harsher more savage road that has irreversibly changed mine and those around me paths forever. I not sure it matters, just that I left it and a new road opened and I took it. Open and willing. Trying to do so with open arms and a newly found heart and soul. I still feel lucky…

So August isn’t my favourite, but I know just a tick away Spring is due and I get to remember the most magicial week of my life. I know this is not living mindfully and it a cycle I will eventully break. My today is all about making new wonderful memories in the moment. My brother is home from o/s and I missed him dearly, we are ‘housesittying’ in another beachside suburb which is new and exciting, and it is Alex and mines 5th year wedding anniversary. And although each year is different and more complex than the next I wouldn’t change what we have created for anything. Our path is hard, but we don’t do normal. That’s not the reason why we are together. That’s not the couple we are. I wouldn’t have it any other way. 

  
Love you poopie xx

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Cycle 7 Day 12: Tell Me What Is Love Revisited. Another Gawler Account.

This is a warning for my Mum….. please don’t get too upset when you read this!! 

I was so disappointed when I realised that the contemplation exercise we were to do was the very one I had done 8 weeks previously. (See my post from Cycle 5 Day 11

I knew the questions, I knew my answers, I knew what to expect. Ok it wasn’t exactly the same because I was doing the exercise with Mum, but what was I going to get out of it?!

I donned the superiority cap (Ms Know It All) and turned to Mum to start the contemplation. 



The first few rounds we talked through the superficial stuff. What love means to us, the types of love, who we love, how and why we love the way we do. Essentially I repeated what I had said during the previous retreat, not diving deeper instead just acting out what I thought were the right things to say. But as Mum shared more and more, I felt I could too. I said that I thought love was innate but I wasn’t sure if I knew how to love. I wondered if it wasn’t in me. I felt like I did it wrong (now there is some good use of the English language!). Maybe I felt like I knew there was another way, a way that was more natural than how I love at the moment. More free, more easy, like I felt during the last time I did the exercise.

When Mum shared that the day I was diagnosed was the worst day of her and Dad’s life, I felt like something snapped inside. She was so upset. My heart broke a little. 

All my life I have tried to please, to do the right thing, to be the good girl. I remember as a child splitting my head open for the second time and saying to Mum when the stitches were going in ‘why does this always happen to me and not Vas. I am the good one!!’ (you know it’s true Vassil!!!!). I tried endlessly to create a perfect reality that was pleasing to me and to others, even if it felt wrong deep down. And although the development of my disease was something that was totally out of my control, a small part of me felt like a disappointment to my family. And now if I don’t get better and do as I am told by the doctors that I will be even more of a disappointment. Ridiculous I know but that’s some times how I feel. It’s not something I like to dwell on but I sometimes think I have ruined their lives and there is no turning back. 

Talking through it with Zoe today gave me some perspective. I told her that when Mum and I sat at the end of the exercise and had to hold our gaze on one another I struggled. Not in the awkward, uncomfortable way I had experienced with my colostomy bag friend but because I was so sad that I had created such pain and heartache in their life. I could see it in her face. I could hear it in her voice. It was the most real she had ever been. And I was the cause. 

I know this is not my fault, I know that no one is to blame. But perhaps in my subconscious I really feel this way and the exercise had brought it to the surface. I was physically having to look it in the eye and it was tough. 

Zoe said I had been fighting this my whole life, it was time to sit with it and be ok with it. Be ok with being a ‘disappointment’, be ok with failure. Be ok with not being perfect. No one is! I need to own it, whatever ‘it’ is because it is real and it is mine. 

I had a strange sense of peace when I left her. Similar to the lightness I felt after I completed the exercise with Mum. 

——————–

Well that was a little babble worthy!

I think the chemo is still in my system working its foggy magic on my brain. But I guess another layer of me exposed…. Gotta love self discovery. Always something new to find. Always something new to learn. Lucky I am still interested, guess it’s the scientist in me!

Cycle 5 Day 11: Tell Me What Is Love

All the talk of blood and hearts this week reminded me of an excercise I participated in at Gawler. It was called Reflections.

We had learnt how to feel our ‘centre line’ during meditation, what they call Mindfulness of Emotion. (A step that I conveniently skipped when I taught myself at home). The reflections exercise used this process but we were to use it to answer four questions. 

So we partnered up and one person would ask the other the 4 questions. The person responding needed to feel their throat, heart, solar plexus and lower stomach and describe what they felt in response to the questions. The words didn’t need to make sense, you just needed to say what came to mind when focused in on the sensation.

The questions were hidden behind a board. When they were revealed I got nervous. 

Tell me what is love

Tell me how you’ve missed love 

Tell me how you’ve withheld love

Tell me how you can be more loving 

I could hear people around me giving long winded answers. Lots of explanations. Mine were short and sharp. Often just one word. I’d done a lot of these types of exercises with Zoe in the energy course, but never with specific questions. 

The words I spoke came from within, from a deeper place. It was lovely. Comforting. Eye-opening. I realised how simple love is. How abundant it is. How easily accessible it is within me. It is warm, light and everywhere. I realised how I shut it off (well I felt what it was like) and how I can allow it to flow into my life more freely. 

If I was nervous about the first step of the exercise, the second step took me WAY out of my comfort zone. 

We had to stare into our partners eyes. Not avert our gaze or pull a face. Just sit with it. For an extended period of time. Umm AWKWARD much!!! 

So I sat and stared into the eyes of man….that wasn’t my husband.

My extremities twitched in protest. My arms tried to turn inwards and I felt pins and needles in my legs and feet. I imagined a black swirling mist moving all around them. I fought it off. I focus on my centre-line. Focused on my partner’s eyes. I felt a tingle in my chest and this warmth broke out across the top of my body. It was vulnerable but beautiful. At that moment everything went a little blurry. I could only see his pupils. It was not about him, it was what was inside of me. How to give love to myself. I didn’t want the feeling to stop. I decided then and there to go back into the ‘real’ world with an open heart. (Something that I forgot about for most of last week, but writing this has been a nice reminder). I am ok with not ‘bracing’ myself when I go outside. I can take off the armour. I am safe. This is how I want to live. 



I did forget to mention one thing…. My partner, who I spoke of above, had a colostomy bag and as a result of its location he had no control over the noises that his bowels made. For those who have read my Vipassana posts will know about my love of farting in meditation halls (not me personally 😉 ). Well, my partner was wonderful at it throughout the entire retreat. He always managed to time his musical notes for just the right moment, when things were too serious or too sad. It would always lighten the mood, always bring a smile and a laugh. At the beginning of the first exercise he let a ripper go. He actually shook his body to get more out. We had a giggle and then for whatever reason I felt like my focus fortify. It allowed me to go deeper, feel more. It’s like he broke the ice in order to prepare us for the second exercise. To him I am grateful! 

Cycle 5 Day 8: Life Blood and an Angophora Tree

I started writing this post on the weekend unsure where it was going. I felt like I needed to write it, there was an urge to get something out. But I didn’t finish it. It was almost there, just like another two posts I have in draft waiting for me to hit ‘publish’. 

Today I feel like I’ll be able to finish it and here’s why….. I am having a blood transfusion.

Over the weekend I asked Alex if I was a tree, what type of tree I’d be. 

I’ve asked him similar types of tree questions before, like what my SULE (safe useful life expectancy) would be. It’s a measure used in the arboricultural world to categorise a tree’s health, well being and as the name suggests life expectancy. He always say 1A. There is no problem on visual inspection from the outside. You show no signs or symptoms of disease.

Would I be deciduous? No….. Would I be flowering shrub? No….. Or more like a eucalyptus? You’d have terminal flowers. Meaning from your crown (he points to my head) not your arse. You wouldn’t have rough bark. But you would drop stuff you didn’t need every now and then. And you’d shed bark. 

*quiet reflection*

You’d be an Angophora

I smiled. Yes! I love angophora’s. They are one of my favourite trees. They have this amazing bark. It turns a grey colour, hardens and then peals off to reveal this smooth but mottled surface. It has a magical deep orangey pink hue. When the afternoon sun hits it, it can take your breath away. 



Alex’s comments lifted my spirits for a short while. I had a bit of a rough week. I haven’t been riding as high as in the days following the retreat. Zoe warned me this would happen. As did the facilitators at the Gawler. It’s a cycle. 

I also didn’t breeze through chemo last week. I thought it was due to lack of sleep and perhaps some anxiety over the results of a scan on my heart I had to have done on Thursday. 

I’ve had four nights of hot sweats. I soaked the sheets through, so slept on a towel like a menopausal lady (which might also explain the cranky and irritable attitude). I soaked the towel through too. Ewww. I’d shower, change clothes then get back in beds . It meant interrupted sleep and that’s never good for me. I talked with the doc and it could be a number of things. My disease, my hormone levels, the drugs. Alex says the moon. It wasn’t a full moon, but there was a new moon, the eqiunox and a solar eclipse all on the same. He also says the ocean reflects my mood, that’s why he checks it so often (not just to assess the waves for a surf or the gutters for beach fishing)….

I also had a heart scan this week. They picked up fluid around my heart on my last CT. Again it could be my disease, the drugs, or all the work I’ve been doing to open my heart, connect with this centre, become more loving. It’s watch and wait for the time being. 

Both have slowed me down a bit. Physically and mentally. And I haven’t felt myself, not sick but just weird. Even with the inspiring visitors and catch ups we have had this week, I haven’t been able to maintain an energy that I normally find within. I wondered what was going on with me.

Yesterday was a chemo day. I cried on the way to the clinic, in the waiting room, in the bathroom, while my pre bloods were being taken, when I talked to Vas. What was wrong with me???!!

My bloods came back and few more pieces of the puzzle slotted into place. My haemoglobin was pretty low so I was told I needed to have a blood transfusion. I totally freaked out. I cried more. I said I didn’t want to have someone’s blood in me. I said I wanted to wait. To see if it would improved by itself. To see if I could get it back up myself. 

I was surprised at my reaction. I wondered if it is because I associate blood transfusions with the sick and dying. I had felt ‘off’ but I have never really felt like a sick person. I don’t believe I am sick most of the time. This was a slap in the face. This was me having to receive something from someone else because my body couldn’t do it on it’s own. This was me having to ask for someelse’s help. Was this me failing? Is this why I’m so resistant? 

I took a moment to breathe. I spoke to Zoe. I felt my centre-line. I was calm when I made a decision to go ahead with chemo. I would have the transfusion a day later. 

I went through a range of emotions over night. I was scared, fearful. It was the first time I thought about really dying from my disease. I think I was angry too. And I took it out on Alex on the way home. Luckily he loves me unconditionally. 

So I returned to the clinic and today I am here, receiving someone else blood. Someone’s life force. I am recieving it with gratitude. Trying to be accepting. It still feels weird though. 



I have left behind those pre-conceived ideas of what type of person receives a blood transfusion. I was a donor in my twenties. I didn’t really think of the end product. I’d like to think whoever’s blood I am recieving did so with good intentions. And those intentions are being delivered straight into my veins. 

And so once again my beliefs have been flipped on their head. Yet another notion I am forced to rethink. That was my perceived truth. A truth from the other side of the fence. Now that I am a blood recipient my truth is different. But maybe a little more accurate now that I have experienced it first hand. 

I think about that beautiful Angophora. My skin was looking a little pale. A little ‘grey’. I’m leaving here with a new hue. Ready for the old layer to start to break off and reveal that glowing pink bark beneath. 



Cycle 4 Day 16: Give up the Ghost? 

While I was waiting for my prescriptions in the Pharmacy yesterday, I heard a song that transported me back to the Forgiveness session I participated in at the Gawler retreat. It was in the second week so was emotional (avert your eyes if you need too….) 

The song I heard was Ella Henderson’s ‘Ghost’. Its a break-up song, I know, but I hear the chorus and I am swept up in my own life, in particular my thoughts turn to Moses….

I keep going to the river to pray,

Cause I need something that can wash away the pain
And at most, I sleeping all these demons away

But your ghost,
the ghost of you, it keeps me awake

During the Forgiveness session we were ask to complete two templates. One for something we wanted to forgive ourselves for. The other for something someone else had done to us. I could think of a million things I wanted to forgive myself for. Silly stuff that I have carried around for years. It was going to be tough to pick just one! But when I put pen to paper, there was a surge of emotion I didn’t see coming and the petty issues gave way to something much bigger. My temples started to pulse and the tears began to flow. We had been asked to feel our centre line during the excercise. I could feel nothing but the buzzing in my head. 

My body (and mind and maybe spirit) was telling me to forgive myself for ‘letting Moses go’. Well that’s what I wrote. Freely and easily through a blur of tears. I couldn’t see the page but the words kept coming out. I wrote that I wished he’d been born, that wanted to have “loved him physically and kissed him on the head”. I read the rest of the template. “It was the best decision I could have made at the time for me. I forgive myself, release it and set myself free”. After sobbing for some time we were ask to read the template out, silently if we wanted and then burn it. I looked around and said I don’t want to let it go. I felt defiant. 

Reluctantly I got up, read it to myself, and watched it burn. I’d done something similar on my due date with Alex. It was cathartic but I was surprised at my reaction. And knew I had not entirely let it go. 

I had not realised the guilt I felt for my choice a year ago. I’d created an air-tight story that I would tell to anyone who listened why I did what I did. Logical, rational. One I don’t think I’d  change even now. But maybe I had being telling this story to protect myself as much as to justify to others. Fearful of criticism (self and others). Typical Anoula, hard on myself, my harshest critic. Here I was punishing myself, not willing to let it go. Not willing to forgive myself. 

I was never sure why I tell people my whole story. I didn’t think it was for pity, but sometimes I thought I did it to shock. Now I wonder if it is to punish myself or if it’s to keep his memory alive. In the meditation session that evening I imagined the albino monk in the Da Vinci Code whipping his back. Over and over. That was me. It needs to stop so that can continue to heal. 

I am so grateful Moses came into my life. As Alex said without him, we might not have her. I would never had gone to the doctors if it weren’t for him. 

So yet again, I realise I still have work to do. I need to work out the balance between honouring the memory and living with the choice (and giving up the ‘ghost’). Some way to go, but I’m getting closer. Thank you for still listening. 

Ergh, that was tough to write but it’s out now. I also remembered the next song that came on after ‘Ghost’. It was Billy Ocean’s ‘When the Going Gets Tough, The Tough Get Going’. I smiled. Walked home tall. 



Cycle 3 Day 14: If You Are The One

I don’t watch a lot of television any more. I don’t like it filling my head space with junk.

But there is one show that I could watch back to back. Over and over…….. ‘

Now don’t laugh, but it’s the Chinese dating show If You Are The One.

On a work trip to Shanghai a few years back I asked my colleague if TV shows like ‘Idol’ were made in China? “Yes. The Voice China is our second most popular show” What was the most popular I asked? “If You Are The One”.

I vaguely remembered seeing it on Australian television, maybe late at night while channel surfing. I knew the premise of the show but I’d never taken the time to stop and watch it. 24 single girls, 1 eligible bachelor, all looking for true love.

I know what your thinking….. crazy cancer girl sitting on the couch in her PJ’s watching some game-show with sub-titles. Hoping that each contestant finds the woman of his dreams, and that they go on to live happily ever after (obviously after their Aegean cruise and she’s worn in her new pair of fashion shoes). Arh, fairytale endings…

But that’s not it!! It’s not just cheesy entertainment to me. I relate to it at a deeper level (again I hear you laugh – I’m a marketer’s dream, right?).

What I like is the contestants varied take on love, their requirements for a relationship and their consideration to cultural traditions. I guess what I admire the most is the (brutally) honest and open discussion about love.

Love is not a topic I am all that comfortable with. It’s not something I used to think about. Nor was discussing it ever top of my agenda, but my interest in love and it’s healing potential has grown since my diagnosis so it’s little wonder why I am hooked on this show. 

"All you need is Love"

All you need is Love?

Over the past year I have thought more deeply about the notion of love, the feeling of giving and receiving love, I’ve explored loving myself without judgement and struggled to understand unconditional love. I remember experiencing an overwhelming amount of love and support after being diagnosed. I smiled a lot in those first few months. I still do. To know how loved you are can lift your heart, clear your mind and make your body feel whole. So I started to asked myself (and others) questions about love in my quest to better understand this emotion. How can I ever know unconditional love if I’ve never have a child?! What does it feel like? Have I experienced it? Is this it? Why do I feel a wall around my heart sometimes? Is this why I can’t connect with ppl? Why do we hurt the ones we love the most? Why does my heart feel empty one moment and full the next? What’s the physiology behind this feeling? Can love heal?

I have not become an expert on love nor have I discovered anything that hasn’t already been written or discussed for centuries, so I will only say that I believe love is beautifully simple in its nature. However, it is something that I (and most humans) like to complicate, confuse and dress up with other issues or emotions. Stripped back it can be so easy. So pure, so healing.

Maybe that’s idealistic of me…… Maybe it’s the chemo talking…….. Maybe I will just keep watching If You Are The One, until someone confirms my belief and answers all of my questions…..