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 1 Day 1: Time To Go Again

I start on treatment again today. I had a long talk with my oncologist about my pain, about sweating, about the headaches. I get the feeling he is just trying to control it now. Not get rid of it. Alex said that’s his job. Getting rid of it is up to me. Sometimes I am blown away by his insight. It’s true.

While we were in Fiji I was having a whinge to Alex about his behaviour. Everything in excess, everything fast. Do, do, do! He reverts to teenage Alex when he is on the island. It is something I was struggling with. I couldn’t keep up.  But I was surprised when he shared with me a small piece of his heart. He said that nothing in his life had ever felt more real, given him more focus or been more important. Some times I wish I felt this way. 

My biopsy results showed nothing new. Except a more confused histology diagnosis, which doesn’t really match my history. More testing needs to be done. And so the plan is too start this chemo for two cycles and then see…

Why do I feel so flat!??? This is the longest I’ve not been on treatment. My tumour has obviously flared during that time. When I think about ‘no more options’, I always come back to ‘well I’ve always got me’. It is an option, but today I think back over the past several weeks of ‘no’ treatment and I wonder about me. I wonder about relying just on me, my body and my mind.  Sometimes I am weak. Sometimes I play the victim. Sometimes the pain takes hold and I just can’t. Maybe it’s post holiday blues…. I am missing the warmth and sunshine of Fiji. 

———

Getting hooked up now and I already feel better, stronger. Ready to go once again. 

  

Cycle 9 Day 5: Scientists v Healers

We often think of healers as differing from scientists such as yourself, do you have any thoughts on how to reconcile these things?

This was one of the questions I was ask ‘on set’ last week during the filming. I thought it was a beautiful question, one that I had never contemplated previously, but one that is so relevant to me now in so many ways.

I had wanted to provide an eloquent and articulate response, that would be inspired, captive the audience and hopefully open up new speaking opportunities….. Instead I gave staccato sentences, that didn’t flow and made me look a little stupid. I was sent the questions beforehand but I had only glanced over them, not wanting to come across like my responses had been scripted…. Lesson learned for next time!

I’ve had a bit more time to think about it.

I would never had even considered these two professions in the same sentence before cancer, but I now believe they share many similarities and I think the notion of ‘belief’ is the common thread between both.

In my scientific mind, a healer believes in the impossible. It’s a belief without restrictions, requirements or caveats. It is often an experience that is individual and unquie. One that can not be replicated. It involves intuition, emotion and a spiritual connection. In a scientist’s world there are rules and methods. Evidence is key, so is reproducibility. It can sometimes be narrow and black and white, but deep down a scientist must also believe in the impossible. If they did not believe in the first instance then why persist with experiments, trials and theories. Why dedicate their life works to it? They work methodically and logically to try and prove what was previously thought of as impossible. They are intellectual dreamers who think outside of the box. Sometimes risking their careers and reputations for their beliefs. Sometimes shunned by their own community for being too out-there, too forward thinking, too radical. But isn’t it this radical thinking that enables us to take those leaps and bounds to advance our knowledge…..

So are they one and the same? Where does that leave me? How do I now fit in? How do I reconcile it all? And does it really matter?

I do my best to balance both sides without living in internal turmoil. Cause in some ways this is what cancer has given me. I can’t disregard all that I know as a scientist. I travelled this path and gathered this information for a reason. So maybe it is my calling to be a better scientist, to be a braver scientist, to push the boundaries, be radical in my thinking. I am reminded everyday that the human body is a miraculous organism. It’s designed to heal or we would not make it out of bed in the morning. So I already believe in the possibility. I just need to hold it. I need to forget the doubt, that creeps in and deviates me from my path, that accepts laziness as the norm and that gets in the way of my dreams.

So can this scientist believe in miracles? In my heart, I now would say yes. And my head is slowly coming on board. After all, one generations miracles are another’s scientific fact. I’m going to get in ahead of my generation and just believe.

  

Cycle 8 Day 8: Another Season

I was born on the first day of summer. We were married on the first day of spring. So it seems only fitting that our first born was due on the first day of winter (well, thereabouts).

It’s a year since I walked to the top of Moses Mountain to read him a letter and say goodbye. I sobbed at every step of the way. I wanted to remember and at the same time I didn’t want it to be over.

I wasn’t sure where the path lead or what was at the top, but as we neared the peak I noticed a beautiful Xanthorrhoea ‘flower’ bent over, pointing to a overgrown path.

 When I saw it I knew this was the spot. Alex and I trudge through the under growth  before it opened up into a cliff top clearing staring straight out onto open ocean. We hugged and cried as I read my letter. The clouds opened up and the sun glistened on the water making a path to directly to us. When I lit the letter and let it burn away, the light retreated, the clouds closed over and I knew he was gone. I was so sad. I hadn’t fully let go. I didn’t feel a weight lift. He was free but I was not.

Today it still doesn’t feel real. I still sometimes think I am in shock. Maybe I have PTSD…. But today will be different to the first day of winter last year. Today we will plant a new pot of lavender. The zodiac flower for Gemini. I will water you and watch you grow as each season passes.

You will be remembered x

Cycle 6 Day 8: Watertherapy and Chemotherapy 

I shared the ocean pool with a tv star today for my early morning swim, but I was more star-struck by the pod of 30 or so dolphins playing, surfing and feeding just of the beach. It was a beautiful start to a chemo day.



Chemo took longer than usual. I have to have extra tests done on my heart and talk to more ‘health professionals’ before they agree that I can start treatment. It gets a bit exhausting and today I was the one calming down Alex who was frustrated with the poor communication between the staff. We were able was to resolve all the issues when the main man, my oncologist turned up, and chemo went ahead. All our questions were answered by the time we left. 

As the sun was setting Alex took me squid fishing in my favourite spot. Paradise. 



It was a magical start and end to the day. All the medical stuff in between seems so irrelevant right now. I was planning on sharing the trials and tribulations of the last two weeks to give some extra context around yesterday’s post, however I think these two pictures will do.