I have just had a long, positive, conversation with my replacement Oncologist/Haematologist setting out my daily treatment from 28th December to 26 January.
I began the conversation by saying that I have gone from a place of trust to wariness, suspicion and hostility. I also said I have to be able to trust the team looking after me, I am not medically trained or knowledgeable and nor is it sensible to suppose I should be. The sad truth is that it came down to personalities, having my lived experience denied to my face and being deceived to serve an agenda I was not an informed party to.
Within seconds of beginning our conversation, I knew I was talking to a very different beast (human being), whose language and tone was sympathique, empathic and caring. He reminded me of a previous conversation we’d had where I had said to him, ‘I trust the team implicitly and unreservedly’. On the phone I said that as far as I am aware, prior to starting chemotherapy, they had saved my life, which he confirmed, they had. Chemotherapy was necessary because the thing that nearly killed me was still alive and well and quite ready to do it again. At no time did I question the truth of that, knowing that I was in a critical battle to live and that I had nothing with which to fight such an aggressive cancer under my own steam. These are simple but critical truths and I added, ‘I want to live, obviously’. He responded by saying he needed to correct me, it was not an ‘obvious’ thing to say and that many people he treats say they don’t care if they live or die and some want to die. Whilst I don’t think I should have been surprised, I was still profoundly shocked. I realised that there were two things going on for me, a love of life and, critically, a profound concern, love and care for quality of life.
I did once despair of life and I am grateful that I survived and that life has become precious to me and that I now consider that as obvious from my personal viewpoint, even though I know many people do despair of life and tragically end it.
My brush with death has reshaped my entire personality, such that I want to find ever new ways to express and communicate what a truly amazing and miraculous thing life is in a world that too easily and frequently treats life as an expendable resource and a commodity.
There is nothing trivial about the month of treatment ahead, not least because I am a recluse and being out and about for anything is non-trivial, but then being a Human Being with human thoughts, feelings, wants, needs and desires is entirely Non-Trivial. One of the reasons I find it difficult being out in the world is how conditioned people are to treat life trivially, which is precisely why I will not have a television in my home. The month ahead is, therefore, challenging on many levels in which being a humanist and loving life is non-trivial.
One of the ways I am thinking about dealing with it, is to take as many of my ‘You are here’ models to give to the nursing staff, not least because these models are a joke played seriously which take time and effort to produce and are a great way of breaking through to people in just a kindly, gentle, way, bearing in mind that hospital staff face tragedy and stress on a daily basis. My mini ‘You are here’ models are, then, a non-trivial coping mechanism for me and a means of connection as well.
I once said to someone who asked me what I do, ‘I’m an artist.’ to which he responded, ‘Who says you’re an artist?’ I replied, ‘I do.’ Fair enough,’ said he with a glint in his eye.
The point is, as a human being and as an artist, I want to engage with life, interact with it, be involved, play and get mucky in it. Life is an interactive experience and it is life itself which is the greatest canvas of all on which we paint our lives. There is no instruction manual and nor is there a time scale other than the certainty of death at some indeterminate point.
No one asks for cancer and only a madman would put it on their ‘to do’ list, but when it comes along it is a complex, difficult and challenging ride and it’s a ride I want to be fully engaged in. The cancer nearly killed me, and did briefly, of which, strangely, I have very real and vivid memories, but the entire point of treatment, no matter how harsh it is, is life and living, in which quality of life is an essential ingredient, even and perhaps especially when the going gets tough.
The simple truth is that right now I am nervous and scared, not of dying, but what the next month is going to involve and the resources and support I will need to get through it. The first round of Chemotherapy took me to the very edge, which felt like a precipice, of my ability to cope. The guy I spoke to today said that it is his experience that most people find Methotrexate easier to deal with and I have no reason to disbelieve him, because he spoke to me and treated me as a human being, with dignity and respect. Cancer is a whole lot more than a mere disease, it takes all of our innate humanity to deal with it and to survive it and it is right and proper that it should because it is life threatening. And that is physically and psychologically non-trivial!
Keith Lindsay-Cameron. 24 December 2020.
Conspiracy of Kindness 