The following ‘letter’ is my ramblings as I try to make sense of yet another of my attempts to engage the ‘wisdom’ of conventional oncology. Please remember these words are based on my experience and the frustration I experience when I hear of the experiences of my clients and the many cancer patients I have come to know.
A few days ago I had an appointment with my GP. As always, he greeted me warmly.
“You’ve had a recent oncology appointment haven’t you?” he asked. This surprised me, I hadn’t seen my GP for months…I wasn’t aware he knew of my appointment. “Tell me how you thought it went.” he added. I laughed. I could see he had expectations of my answer. I soon learnt why.
The last paragraph of the report that my GP had received from the ‘temporary’ oncologist I had seen explained his inquisitiveness… (Unbeknown to me ‘my’ oncologist had moved over to another state eight weeks prior to my appointment)
“No oncologist here will be willing to see Karen unless she agrees to have treatment. For this reason I have referred her back to you…”
Dear Western Oncology,
After thirteen years on the periphery of the oncology system I shouldn’t really be surprised at the comment at the foot of the report written to my GP. I’d experienced it in many other ways, on many occasions, by many oncologists as I’d tried to seek help and support, and understand why treatment protocols are as they are and whether they’d be of any benefit to me. And yet, despite previous experiences…I was surprised; I was troubled…again.
As cancer patients we are reminded, often, about what it is to be human. The experience of being so aware of the fragility of life heightens our sense of appreciation of what is so valued in the human experience…or at least to my human experience. Our perceptions are fuelled by the feelings of our heart in response to the experiences we have. What was I to make of the comment that closed the report you wrote to my GP? I felt rejection…and you rejected me because I didn’t comply 100%. Do you know why? Do you know what I understand? Do you know which journals I’ve looked at? Or which published studies I’ve based my decision on? I may have misunderstood the information but I’ll never know that because we haven’t had a conversation about any of this. You’re the specialist that is trained; the person best placed to help me understand but oncology, as a discipline, prefers a patient to be compliant, passive and submissive. Cancer patients have to be ‘good’ – the little girl or boy that brings an apple to their teacher kind of good…or so it seems.
How do cancer patients gather support from ‘specialists’ if that support is so conditional? Was there room in the comment made for a relationship to develop between me and the oncologist I’d been referred to? I really wasn’t sure. Was I courageous enough to try, yet again, despite the comment? I wasn’t sure of that either. I knew that trust and the quality of relationships were important to me; the quality of any relationship is what trust is built on. This is one of the foundational stones of who I am in life.
Trust is a product of the relationships we have. We see it in the relationships we have within our families, with friends, within our communities, our societies and the relationships there are between countries. We also see it in the relationship we have with our self. Without trust, fear is able to fester; resentment and anger come in to the spotlight and suspicion becomes an additional voice to contend with. These medalling forces form divisive feelings highlight the attraction of ‘giving in’; of succumbing to my fragility – despite the masks I wear of ‘coper’, ‘strong woman’, having a ‘positive’ outlook and being ‘resilient’. For me these medalling voices shout loudest when I enter the medical world of oncology irrespective of the clinic being private or public…the mould appears to be the same…at least it does within the realms of adult oncology because the triggers and constraints seem to be the same and the specialist staff in adult oncology assume a patient will trust them, without question.
When a patient is diagnosed with a chronic health condition trust is what enables them to relinquish some control of the most precious gift they have…that of life. Their life. Their life though is not just the physical. Oh how easy living life would be if it were…how much easier the work of our medical and holistic practitioners would be if life was simply about the physical. But it’s not. We are a beautiful, complex, colourful blending of the emotional, spiritual, mental AND physical. We can’t hang each of these on a coat peg at the door of the oncology clinic and choose only to wear the physical. With us come the anticipations and anxieties, the fears and vulnerabilities, and the need to understand via the questions we ask. It’s a way for us to be known…for you to see us despite the destructive, harrowing, maiming treatment protocols you suggest. Our questions are our need to understand; a way to gather information so that we can come to terms with the compromises we come to make and ‘let go’ of what was because many of the decisions you want us to make will have a profound effect on our ‘new’ life. Questions aren’t asked, at least not in my experience, as antagonistic probes with which to irritate you. They are a means to understanding and a way of opening up a dialogue so that we can maintain some responsibility for our health and a way for us to ascertain how willing you are to support us, through treatment, and consider what each of us need because we could so easily be your mother, father, brother, sister, wife, husband, or child. Someone you love.
We all know that our time on earth is finite but with the diagnosis of a life threatening condition, time becomes acutely finite.
‘Time is the coin of your life. It is the only coin you have. Only you can determine how it will be spent. Be careful lest you let others spend it for you.’ – Carl Sandburg
My questions are the change I use before trusting you with the more valuable coin…that of my life. I hadn’t realised that by asking questions you would abandon me.