Five months ago I developed a chest infection which would not clear up. I had been overworking: four part time jobs, three children, Christmas with its expectations, and a winter of coughs and colds. My general practitioner suggested a chest x ray examination. I went with my 5 year old daughter in tow. The result was extraordinary and the radiologist looked suitably impressed. My daughter turned to me, "Mummy, has your cancer come back?" "I am afraid it has, my love," I replied.
At first I crept into my bed and withdrew from the world and howled. How preposterous not to see my lovely children grow up. How unbearable to have had only half my life with my love. How disappointing to leave all my exciting work plans at such a vulnerable but optimistic stage.
So, four years after the first diagnosis, I have a tumour like an avocado pear in my right lung and a small crescent of functioning liver remaining. I am probably dying: the biggest adventure of all. The past five months have appalled, surprised, and exhilarated me and given me insights into my life in a totally unexpected way. I would like to share some of this richness.
Breast cancer is a roller coaster of an illness with windows of complete wellbeing, the last of which lasted two and a half years. I was more than well. I was fired with energy and vigour. I focused on my family with an intensity that sometimes bewildered them. This holiday must be the best yet; that school must offer my child the most; I must have all the good things now. It was my abiding luck to have had a partner who could love me and give me ease during this turbulent time. I decided not to get involved in medicalising my remission. I took only a passing interest in oncology literature, had an open mind on tamoxifen, which I eventually took for 18 months, and had regular check ups.
I felt an enormous need to move my intellectual life along. I wanted to make changes to medical education and look at how we encourage young doctors to recognise that primary care offers riches as a career and a life. This work has been the most exciting time of my life and I have been privileged to spend it with an extraordinary bunch of colleagues as a lecturer in an academic department of primary care, as a vocational training scheme course organiser, as a general practice postgraduate tutor, and as a regional assistant adviser.
I began to formulate a vision for my illness. I decided not to have further chemotherapy. A very tough decision: it was the oncologist's best offer and best offers need to be respected. My heart told me to nurture all the wonderful bits of my life rather than to try again and, I suspect unsuccessfully, to poison the tumour. I decided to spend time thinking about core values, to clear the clutter, to be there for my friends and family, to follow up my ideas, and to write poetry and letters.
All my life I have been the doer and the fixer. Doctors have this terrible problem: they need to be needed so badly. I have been difficult to live with because of my quickness and my impatience but I have begun to learn the joy of receiving gifts, people's best offers. Everything from flowers and trinkets to a fellowship of the Royal College of General Practitioners. My education certainly taught me nothing about the grace of receiving. In addition, my anger has evaporated. The anger has always been a plague. I have always been quicker and brighter and more impatient than most other people. It energises shapes and delivers, but it can hurt and bewilder. I have put off dealing with it again and again. I am sure that always having a good five month plan as well as a five year plan helps to diffuse and defray this, and to some extent protect from disappointed dreams. But it also distracts from dealing with the internal focus where anger resides.
At the moment I have a golden window of time. The steroids control my liver pain, have given me comfort and stopped the catabolic state, which was beginning to get rather spooky, and in addition have given me an even sharper mental edge. Modern science has so much to offer and the teamwork that goes on between my palliative care nurse specialist, my general practitioners, and my hospital colleagues anchors my sense of knowing that this business of dying is oddly doable. Advanced cancer is a curious condition. I believe that we understand it very poorly. The spiritual and personal resources to work within it are enormously powerful, and there are many choices fight it, accept it, reflect on it, and live with it. Fearing is the real trouble spot. We all need help with this.
Our openness about my illness has allowed so many channels of communication to blossom. My friends and colleagues have told me that dying isn't usually like that, more a sad and slow withdrawal from life with loss the dominant theme. In our society people get medicalised and pitied and feared and isolated when they are dying. They have so much to offer if we can just accept it as a time of specialness and privilege. One friend commented that what we really need are midwives for dying. The essential elements of particular skills of companionship, passage, and journey with a prescribed endpoint mirror each other in birth and death. My Macmillan nurse is a very fine midwife.
I am having a wonderful time fixing treasures for my children. There are diaries and tapes of stories told and oral history which a friend has agreed to type up for me. The trinkets, the photos, and the lovely clutter of my nest are something I feel is one of my best offers. My man is desolate, but we are trying to prepare strategies to deal with this too. My children are developing ideas about levels of communication beyond death, which are very exciting to nurture.
My spiritual journey is rich and varied. I think that a mother's watching brief passes beyond death. My lifelines and the threads I have woven in my world are here and real and I will be a difficult person to forget. I am content and comfortable at home and my house is full of company and bright things. My death when it comes will be a journey. I am writing a book about this phase of my illness, about the dreams I have had, the dialogue I have entered into with my tumour. It is much clearer to me now what really matters and what is clutter. Unconditional love is a feature of this time, offered and received without judgment. I am sure that these energies are important for healing. I am much better than my liver function tests suggest I should be. The wellbeing is physical and spiritual.
I have no clear idea of my time path. I know that I have time to live and love and, despite my perilous illness, there is a curious sense of openness about my journey. Perhaps there is another chapter to unfold.
CLARE VAUGHAN lives in London
[Clare Vaughan died on 6 July.]