Challenge of ‘UNCERTAINITY’

Living with Cancer-the challenge of ‘ Uncertainity’.
R.Srinivasa Murthy

The diagnosis of cancer is life changer. Life is no more the same after a diagnosis of cancer.

‘ Uncertainity’ of life becomes an essential part of life.

‘Uncertainity’ comes from both the uniqueness of cancer which is individual specific in terms of the unknown way the cancer responds to treatment and the changes that have to be made, thinking of the eventuality of death, in case the disease progresses.

The responses to the ‘Uncertainity’ falls into one of the three types. These three types of response is not exclusive of each other or sequential. Each individual and family members pass through them forward and backward as the time passes.

NON-DISCLOSURE TO PATIENT:
Before considering the three responses, I must refer to a small group of persons who are kept in ‘ignorance’ of their condition in the Indian setting. In India, as in many Asian countries, family members frequently do not allow the doctor to disclose the diagnosis.
This is reported in a 2009 study by Chaturvedi and a more recent study by Chittam, 2015. This is a special challenge of those working in non-western countries like India- A key question here is how we accommodate cultural practices and differences, including values, within the context of biomedical cancer care (Broom et al, 2016).
The person in the ‘dark’ has limitations in adopting a healthy lifestyle towards recovery, may fail in treatment compliance and more importantly loose the opportunity to reorganise his/her life goals and use of the remaining part of life. This issue needs greater consideration in India.

Living with Cancer and Coping:

The challenge of living with ‘Uncertainity’ is to harmonise the response of the ill persons and that of the rest of the family.

First response, by far the most common, is to replace ‘Uncertainity’ with certainity. This occurs by looking for a ‘CURE’. In almost all cases of cancer there is no cure. There is only a better or longer period of disease free status.

However, most of the persons diagnosed with cancer and their caregivers in the family and the medical team find it attractive to pursue the chimera of cure. This would mean medicine/surgery/radiotherapy, maintenance drugs, altered food intake, use of alternative therapies, religious interventions and you name it and people will follow it.

The positive aspect of this response is that it is good to think of ‘cure’ and the energy generated can keep the fear of death, ‘Uncertainity’ at a distance.

However, this approach is the only response is costly in every sense of the term. It costs money. It costs time. It costs effort.
More than all of this, if this response if the only response, the disappointment of relapse/recurrence is that much greater. Further, if the death occurs in an unplanned manner, the individual /family have lost the opportunity to plan the end of life situation.
I have heard repeatedly, individuals/families , recollecting, how all the time was lost in looking for a cure. Frequent comment, ‘if only I knew that there was no cure, I would have lived the end of life doing things other than spending in medical settings’.

The LOSS of an opportunity to have quality time with self and the family is the biggest loss.
Another negative dimension of looking for cure, is the often reported financial difficulties- ‘we sold our property for the treatment’ ‘I do not want to leave behind my family in poverty and destitution’.

Second type of response is the extreme is utter despondency and feeling that life has ended. What is the point of living with ‘Uncertainity’ . Why enjoy or do things? Further, the individual or family could withdraw from all nor mal activities and thus result in a ‘social-spiritual-psychological death’ much earlier than the body death.
For the family members to respond to a person who does not see hope is most taxing. They can not do anything to help the person. Further, they can not get on with their life, as it would look insensitive to the ill person. Also the family will feel confused in trying to be positive and also being supportive.

The lost family, social, and sometimes professional time can be significant. There is some indication, that negative emotional reaction could hasten the progress of the illness. Certainly the quality of life of the individual and the family is significantly affected.
Sometimes, in these situations, individuals end their life. Recent examples are that of senior police officer, Sri. Himanshu Roy and the 38 year old, Marathi director suffering from intestinal cancer.

It is in these situations that individuals separate, moved away or move to an institution so that they can be alone.

The third response would be that takes into consideration, the ‘Uncertainity’ and REFORMULATE LIFE or find a ‘purpose of life’ .This necessarily means that things have to be prioritised, activities have to be given up and new meanings found( mostly spiritual). Unfortunately, this approach is the most difficult to follow.

The reasons are many.

Firstly, there are limited models to follow Most of them are stories of the victories( the first kind) or that of the second type.

Secondly, this response can occur only with a good understanding of the nature, stage and medical information about the cancer, which is rarely provided by the medical team. In order to protect or to promote the positive approach, most medical teams avoid discussing this important asppect of treatment. Even when confronted, ‘why do you worry- leave it to me” “go and enjoy your life”(as though having cancer is like being in a picnic!!).

Thirdly, the move, what I would like to call, from ‘ struggle to surrender’ requires opportunities with the treating team to explore the different avenues. No medical team has the time or the expertise.
Fourthly, especially in India, families do not allow the medical team to explore this issue for fear that the ill person will loose hope, can not take it, what will we do if he/she breaks down etc.

As a consequence an ordinary person diagnosed with cancer, is life for looking for the mirage of ‘cure’ or feel internally hopeless and miserable.
One of the worst outcome of the aboue three situations, is when the ill person and his/her caregivers are not on the same page.

Let me explain.

Susan Sontag, in her book, Illness as a Metaphor, has referred to the two kingdoms of the well and the ill.

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
I want to describe, not what it is really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about that situation: not real geography, but stereotypes of national character.
My subject is not physical illness itself but the uses of illness as a figure or metaphor. My point is that illness is not a metaphor, and that the most truthful way of regarding illness – and the healthiest way of being ill – is one most purified of, most resistant to, metaphoric thinking.
Yet it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped.

The biggest challenge for the family is to go on living in the kingdom of the wee while seeing the family member occupying his place in the kingdom of the sick.

It is challenging for those in the kingdom of the well, to understand the emotional turmoil and differing set of priorities and values of the person in the kingdom of the sick. The most frequent response of the family is to ;

“We are doing everything for you, why are you still unhappy”;
“We have to have a life of our own”

The area that causes the most difficulty is in terms of the TIME FRAME that the ill person and the well persons have. The ill person, by the very nature of the illness and ‘ uncertainity’ has a shorter and more focussed time frame. The rest of the family would like to think of the life long/long term life time and plans for everything from money, materials and relationships.

This problem has been experienced by others with a diagnosis of cancer.

One of them is Marilyn French who had this to say:

“I no longer have large scale desires. I no longer wish for or expect undying love, perfect harmony within my family, a life in which everything is right (which, however absurd it may be, I did desire and kept anticipating before). I have only small desires- for a glass of cold orange juice, a good book, a visit with someone I love. Not only do I have no large desires for myself; I no longer have them for the world. Coming up against the absolute limit of death destroyed my fervent belief that an ideal world would be created if only people would do X and Y, believe what is before their eyes, let themselves be happier. It destroyed my absurd and unconscious belief that because I could see the ideal, I had the responsibility to help others see it, to create it. The weight of this responsibility was heavy, and carrying it made me angry. I was also angry because I was frustrated that no matter how simple it all was, it was not happening.

Coming close to death as I did engraved on my consciousness the understanding that the ideal is not going to happen, that it was always a delusion, the daydream of a wilful child, engraved upon my body by yearning and misery and helplessness like the faulty tattooed on one’s body by acid-dropping needles that prick it as the sinner is turned around and around on a huge rotisserie, in Kafka’s The Penal Colony. Coming up against failure in so absolute a fashion calmed my anger and cooled my ambition. I am no longer driven, I no longer imagine I can do much to help bring about the millennium of the human ideal, or that I can change anything at all. I have relinquished my painful freight. I am free. I am permitted to enjoy myself. I have noticed that my laugh has changed, is more spontaneous, deeper. I am almost serene. I can not say that I am happy that I was sick, but that I am happy that sickness, if it had to happen, brought me to where I am now. It is better place than I have been before. I am grateful to have been allowed to live long enough to experience it.”

When the ill and the well can not recognise the differing world that they inhabit, it can be cruel to both of them.

Cancer is a true life changer and challenges the ill and the well.

I recall, reading in George Johnson’s book: The cancer chronicles, the following incident:

‘During that year our marriage ended, seventeen years after it had begun. For a long time our lives had been diverging. The cancer had brought us closer but now it was gone. Brushing so near death makes a person think about how she wants to spend what is left of life. Nancy had her reasons for deciding it was not with me’ .

What a price cancer demands from the ill person and his family??