Sunday, January 2, 2011
THE STIGMA OF CANCER AND THE CONSPIRACY OF SILENCE
Had he lived, John Diamond, British broadcaster and journalist, would have been my age. He died of throat cancer at the age of 48 around 10 years ago . “Cancer is a word; not a sentence," he had said once during the course of his treatment . In all my years working with equally wise and never say die survivors this is one of the very many great truths I have learnt.
But it has not always been easy for many who have had to embark on this journey of courage and resilience. Over the last few weeks I have been asked by friends and readers of my blog to write something about my work and what I am involved in and I want to share this experience from some years ago…
The dilemma of two mothers
It was my first meeting with the young lad; a bright-eyed and sharp looking fourteen year old who had just been diagnosed with leukaemia. He was accompanied by his mother who took me aside the very first minute she could to warn me against mentioning the word “Cancer” in the hearing of her child. ‘I do not want him ever to know he has this disease; he will never recover from the shock” she said. It broke my heart to see her struggling with this secret she had sworn to keep from her beloved son ; the heart ache she had to hide.
My mind went back to some weeks ago when another concerned mother had begged me to show the very same consideration to her sons; only this time it was the lady herself who was diagnosed with cancer. ‘Please do not call home ever and do not mail anything to our home address” she had insisted. ‘My sons will not be able to bear the shock of knowing their mother has cancer”.
Both these loving, caring mothers were, without even realising it, being trapped in a web of conspiracy and silence which would only isolate them further with nothing but the stigma of cancer for company. Fear, ignorance, prejudices and the myths and misconceptions surrounding cancer has forever led people to view it as a sinister, contagious and worst of all, a shameful disease maybe brought upon themselves or their loved ones through some misdemeanour on their part.
In both these cases it was nothing but the fierce desire to protect a loved one from the trauma and anguish that exposure to the situation they thought was sure to bring about. What was unfortunate was that the perceived stigmatization and the enforced silence would only prevent the understanding and acceptance that was essential to ensure good management of the disease. Hiding the diagnosis from the patient or /and the primary caregiver would become the biggest deterrent to good compliance and therefore effective treatment.
Prolonged counselling sessions eventually chipped away at the insecurities and unveiled probable causes for the need for the secrecy and silence. Fear of ostrazisation by family, friends, school mates and co workers came first. But most of all it was the inability to realise that in those closest to you, one found support and sustenance. And that, they would move heaven and earth to make the world the best place for their loved ones to be in. And then, what relief once there was no need to hide anything any more.
Like the mother who was the patient said, once she shared the diagnosis with her sons it was as though the greatest weight was lifted off her shoulders. Even the fact that she had cancer was easier to handle now. She had given it a lot of thought when I suggested that if ever her sons learnt about it from someone else or by accident they were going to feel she did not trust or love them enough to share such a momentous occurrence in their lives. Meeting other mothers and families in similar circumstances at support group meetings went a long way in convincing her that her sons had the right to know. In the years following the diagnosis, the proud mother tells me there is nothing she does not know about her disease which her sons have not scoured the internet for and given her the latest updates for. “They are my eyes and ears” she says proudly!! “What would I do without them “
And going back to the young boy from whom his condition was being kept a secret, a secret that was becoming more and more difficult for the mother to keep; the doctor shared with me that the young lad was very much aware of his diagnosis but was happy to let the mother believe that he was in the dark. He apparently was, in his own way; with help from the internet learning all about the cancer for which he was being given this specific treatment protocol. One fine day he confronted his doctor and in turn swore him to secrecy so that his “Ma” would not suffer. He confided in me saying that he was very aware of his rights as a patient but as a son his duty to keeping his Ma happy came first.
It is now eight years since the diagnosis and the once young teenager who was kept in sheltered silence is now an adult lending his broad and capable shoulder for his Ma to lean on and take courage from.