As well as invading my body cancer has silently crept it's way into the structure of our life; walking into our home it is subtly changed, as if the colours have become muted and our usually routines have slightly shifted on their axes. Cancer invades everything, it's fingers gather everything I hold dear into a dark place. So before the sh*t really hits the fan and I head off into the unknown of surgery and hospital we decided to escape to somewhere new that wasn't known to us or to my cancer. Somewhere we could pretend that cancer didn't exit and everything was hunky dory; somewhere to become grounded again, peaceful and quiet where there was space to breath and just be. So we travelled to deepest Aberdeenshire to the Barley Bothy; a beautiful tin and wood bothy in the middle of a barley field. And there in the tranquility and quiet, we spent our time keeping the log burner fed, watching the stars and breathing deeply.
How do you get ready, how do you prepare for surgery that is going to radically alter your life? I have no idea! Here I am with less than three days to go until the surgeons knife cuts through my flesh and through me as I am now, and I am at a loss of what to do with myself and with the time I have left as the current incarnation of me. I had planned to clean and tidy, to prepare - for what I don't really know. And yet I find myself stuck to the bed, by an inexplicable force - holding me there wanting to make time slow down. Instead of doing, I find words springing into my mind that I am pouring out onto these pages; I have no idea if anyone will ever read them, yet they keep coming. The inertia required to overcome the heaviness I feel pinning me down right now is immense. Change is both challenging and frightening and yet I know, that if I want to live, I have no choice but to embrace the surgery and the changes it will bring. Time, of which I no longer know how much I have, is the great healer and I hope that there is time for me to heal, to adjust to this change.
As a cell biologist one of the biggest challenges I face is biological variability (def - apt or liable to vary; deviating from the usual type). In trying to define a characteristic, biological variability forces us to use the mean; we can describe the average or mean characteristic but never encapsulate all possible variations of that characteristic into one value. I have come to love biological variability; that point at which you think you have something sussed and you try an experiment one more time and get a different answer forcing you to think further and delve deeper for an explanation - biological variability creates the complexity of life. Yet, I have seen biological variability confound scientists who work within the boundaries of defined laws and outcomes and so it seems, in my experience, that biological variability also confounds medicine.
Medicine, I have found, tends to practice on the basis of the absolute mean and doesn't cope well with variability - outliers confuse the practice of medicine and little consideration is given to the case that people and their symptoms don't always fit into the constraints of the mean.
Take for example my cancer - ovarian clear-cell carcinoma - it doesn't produce the standard ovarian cancer marker, CA125; making it easy for clear-cell to slip under the radar unnoticed and go about it's devastating work silently and unseen. Ovarian clear-cell carcinoma is an outlier - only a small percentage (less than 7) of ovarian cancers are clear-cell; so it is not an 'average' cancer and it does not sit at the forefront of the mind of the medical practitioner it presents itself to.
In working to the constraints of the mean misdiagnosis can occur, so it was with much empathy that I read this post by Kate Davies on the misdiagnosis of her stroke. Kate's words led me to think of my own diagnosis and the path that led me to where I am now. Especially, to the letter from the registrar telling me that my blood test results were normal and, a year and a half of pain and concerning symptoms later, to the late night phone call telling me that abnormal cells had been found and did I understand the implications of this?
By focusing on the mean, medicine becomes deaf to those who present outside the mean, by focusing on the mean medical practitioners fall into the trap of diagnosis by assumptions.
As an outlier the need for medical practitioners to learn to listen, not just to the verbal communication but more especially the non-verbal communication of their patients seems ever more urgent. I have learnt the words to say, the red flags that mean I can advocate for myself and create the inertia to get things moving. But it has taken time and learning to get to that point, time that maybe I don't have to loose, to get a medical practitioner to listen to me to consider that my cancer and I are outliers; that together my cancer and I make up the complexity and wonder of life.
I thought at the beginning of this 'journey' it would be polite to introduce my cancer; I have ovarian clear-cell carcinoma (all the c's).
I've spent the last twenty years of my life working with cells. Observing, watching them grow, studying the location and behaviour of the proteins within them. And now as I look at my cancer cells, at the cells that are me but unless they are tamed will kill me, I find them devastatingly beautiful. And here is the quandary, those cells are part of me, they are me, so how do I fight with myself? How can they be stopped without stopping me? On a physiological level they are fascinating; I wonder about how they have mutated, what has changed within them to make them march to their own beat, but then I find myself also wondering how are they going to change me?
image source http://en.wikipedia.org/wiki/Clear-cell_ovarian_carcinoma
At the beginning of this year I toyed with the idea of spending more time in this space, recording more of the made things and some of the messes! And then out of the blue, I've found myself sucked down into a vortex of what really can only be described as sh*t - I've been diagnosed with ovarian cancer. So here I am standing at the edge of a precipice, I have no idea how far I'm going to fall and if there will be anything to break the fall. As much as I wish time would stand still, it is marching on and so one of the toughest 'journeys ' [if that's what it should be called - I'm still deciding] of my life is about to begin. So as well as some of the made things and messes, I plan to use this space to record what happens next.