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

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 4 Day 15: A Clinical Trial – Would you participate?

I always thought, if asked, that I would particpate in a clinical trial. I wonder how many feel the same way?

I remember my first job (which was at the hopsital where I am currently being treated) having to dontate a vial or two of my blood every other week to the PhD students in my department who needed monocytes for their experiments. I had no issue with it, I volunteered willingly. In fact I would ask to see what my cells looked like under the microscope once they had been isolated and stained. Or wanting to know how they behaved during the experiment and whether or not it was expected for ‘normal’ cells.

Even when, a few years later, I went to work for the ‘dark side’ at a pharmaceutical company, my opinion and thoughts on being a clinical trial patient did not change. I know that ‘Big Pharma’ gets a bad wrap in the press sometimes for its practices and ethics. I remember in my first year in industry hearing one company employee calling the department I worked for the ‘Sales Prevention Department’, so I understood where this public mentality came from. But my job, my responsibility was to ensure that the rights of trial patients were being upheld and to check that the data that was being collected was accurate and correct regardless of profit margins or sales forecasts. My role was not to see and talk to patients to check on their well being, there are other external mechanisms indepentant to the company and the doctor in place for that. My job was to audit the doctors, their process, practices and the information they were providing the company. You were trained to look for oddities, anomalies in the data. You become a little bit like a detecitve trying to verify that what is in front of you is fact. That it actually occured they way it was recorded. I digress…

I had no hestiation to say ‘yes’ to the current trial I am on. But the reasons I said yes are very different to the altruistic views I held prior to my diagnosis. I always believed I would particpate in a trial because I would be contributing to the greater knowledge of that disease, whatever disease that may be. But when it came to the reality, I said yes for more selfish reasons. 

I remembered an oncology drug I worked on that had an incredible result for one woman with ovarian cancer. It was advanced and she had failed many other standard treatments. But this drug, the one I was working on, did wonders. I remember seeing the before and after scans. It had virtually disappeared overnight. I’m not even sure if that product made it to market but it worked for that one woman and for her that was all that mattered.This is how I think now in terms of the clinical trial I am on. Yes, the sceince behind the molecule makes sense. Yes, the tumour biomarker says I am a match to the drug. And yes, my results will go into the collective datasets for the greater ‘good’ and understanding of this disease, but I am doing this for myself and no one else. I am n=1.

As with all things in my life, my ingrained patterns of behaviour have sowed a small seed of doubt about the trial. My doubts might stem from a different place than those who might be scared of big pharma or don’t agree with their practices. Perhaps it’s my body, and the pain which has slowly appeared over the past few months. Or maybe it is that I always assumed that if I was on a trial it would be too late for me. It seems strange of thinking given the number of drugs I have work on over the years that have been of great benefit to patients with diseases like HIV, Rheumatoid Arthritis, Crohn’s and cancer…. Maybe it’s because these drugs don’t cure as such. They turn the diseases in chronic illness. Manageable and no longer life threatening. The perfect scenario for the drug company, I hear some say. I do believe that cancer is on it’s way to becoming a ‘chronic illness’ that is managed and not life-ending. We may not be there yet, but I think we are close. Is that a bad thing?? Not in my eyes as a cancer patient. I am starting to babble now….

Anyways for me this is just another pathway to re-write, they keep coming up and I keep knocking them off. One thought pattern at a time.

So…

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Cycle 4 Day 14: Body, Mind, Breath

I had an inkling I was a dysfunctional breather when I started learning some of the pranayama breathing techniques and I did the opposite of everyone else (inhale – stomach goes in; exhale – stomach goes out. It should be the other way around). But then I remembered the breathing issues I had as a child. They would normally appear at night and the only way to fix the problem was if I sat up in bed and took a deep breath. I would get up often to tell Mum and Dad – but I think they thought I just wanted to stay up and watch more tv. I remember Mum telling me the story of the boy who cried wolf…. (Mum, you didn’t scar me, if that’s what you are thinking – so don’t worry!!! 🙂 ) And maybe it was Dad. We can always blame him, because he doesn’t read my blog!

Breathing difficulties have been a relatively minor (but constant) issue throughout my life. We all breathe, however we don’t pay too much attention to it. There is no need too. It occurs naturally, without thought or being conscious of it. Having lung cancer has changed all of that. I am very, VERY conscious of it. Only days after getting out of hospital, my friend took me to a group meditation “Focus on your breath. Going in and out of your lungs. Not trying to change anything about it. Just observe.” With each breath all I could think was “Inhale – You have a tumour in your lung! Exhale – You have a tumour in your lung!” I was so agitated, I could not wait to leave. Longest hour of my life!

I am far more comfortable with watching breath and appreciating each and every inhalation and exhalation now. Meditation and yoga have really assisted with this. More recently, I met an osteopath who specialises in dysfunctional breathing. I knew she was my type of practitioner when I found out that she was also a naturopath and had trained in Traditional Chinese Medicine. I started taking some of her breathing classes and I quickly developed a lady-crush. She is so knowledgable about the science of breath. Its biochemical and biomechanical actions in the body, but also its ‘psycho-physiological’ function and the strong link with the autonomic nervous system. I associate healing with the parasympathetic nervous system. It was the primary reason why I began meditating.  I felt my parasympathetic nervous system was being dominated by my sympathetic nervous system and that it was virtually non-existent when I was diagnosed. Using the breath to bring this system back into balance seemed right up my alley.

Spending more and more time with my osteopath I have come to realise that the way we breathe is a reflection on our own well-being – physically but also mentally and emotionally (maybe spiritually too?). I think about the flight-fight response, or when we are dealing with shock/stress, or when we cry uncontrollably and how our breath alters accordingly. The same can be said for the breathe when we experience the relaxation response, or when we are happy or feel real love. It’s funny how everything I seem to do seems to reiterates the same message, just in a slightly different way. I had become aware that the breath and mind/emotion/thought are linked at vispassana. During the first evening discourse the teacher talked about the breath being the bridge between the conscious and unconscious mind. Breath being one of those bodily functions that is unconscious but can be regulated if we think about it. Again, right up my alley!

So my formal breathing practices have begun this week. I chart my progress. It’s like another little experiment. I am a weirdo, because this excites me. But the benefits of better breathing are endless. And its simple, and its free and we all know how to do it!  I think us humans like to complicate things in order to solve problems. To show how clever and advanced we are….

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