A Different Life

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.

—Susan Sontag

A diagnosis of advanced ovarian cancer in February 2013 split my life down the middle, like an axe on wood. The person I was before that event became a stranger, the person after a stranger too. For I led a different life.

Disease and the effects of chemotherapy made me old. I crept, held rails, looked out for toilets and places to sit down. The couch at home became a “place of safety”. Each morning I swallowed a clutch of pills.

Daily activities became almost insurmountable. Confidence was lost not only in driving but in making tiny decisions—how far to walk, how to use the computer again, remember a PIN number, search for food in the cupboard, for glasses, keys, handbag, without a sense of panic.

Feeling unwell, deeply fatigued and fearful that I wouldn’t make it, I dreaded supermarket shopping. At least, I told myself, I was out doing something normal. People in the aisles who were “well” I envied, but came to realise that many had burdens, health or otherwise, of their own.

Before leaving hospital, my rehabilitation was planned. A metal portacath, capped with silicone, was inserted under the skin above the breast. The bump looked like a pacemaker. A small catheter from the portacath fed into the blood stream near the aorta. Chemotherapy and pre-meds for nausea and allergy were delivered efficiently and painlessly through this gateway. Uncomfortable, constant injections were unnecessary. Lasting up to ten years, portacaths are an example of today’s technology from which I was lucky to benefit.

Weekly Taxol, Carboplatin and later Avastin were my only defence against cancer. My oncologist compared them to an industrial cleaner. A blood sample analysed weekly monitored kidney and liver function, white and red blood cells, haemoglobin and platelet levels. Due to chemotherapy’s toxic assault some of my results often fell outside the normal range.

The eight-weekly Ca 125 blood test indicates the amount of cancer present in the body. Below 30 it is no longer detectable. Over eighteen months my level fell from over 2000 to 33. With this encouraging result the drugs were reduced from weekly to fortnightly infusions.

The saying, “The cure is worse than the disease”, is not fanciful. Side effects of chemo include an intense tiredness exponentially more severe than ordinary fatigue. I wake up drained. Energy and motivation do not exist. Food and rest give minimal respite.

Chemotherapy numbs the nerves in feet and hands, a condition called “neuropathy”. The hands merely tingle but the feet are “made of clay”. They are not my feet. I stump. But they are not painful and I can walk.

Anxiety is a disease in itself. Uncertainty and threat engender negative thoughts. What if I die? How long will it take? How can I cause my family so much dislocation and pain? I bargain for time. Give me ten years. I am hypersensitive and reluctantly attracted to every catastrophe in the world. And the list of disasters is endless.

Some say they welcome the experience cancer has given them. Never could I say that, though I have been exposed to new values. Cancer has taught me a reverence for energy. Energy can be destructive but is also the source of everything people do, responsible for artistic, scientific, physical, humanitarian work. Even a nudge of the desire “to do” brings fleeting euphoria. It’s like a small explosion of hope. Or seeing a light lead out of a cave. I tried to put this into a poem about fatigue:

Wanting to Do

is a memory

whose ghost returns

when a tiny chore,

a “doing” which she’s eager for

suggests itself:

fold clothes, put knives and forks away,

wipe table down.

Small acts of tidiness

give pleasure

in a body’s short-lived willingness,

return her to normality

or its pretence.

When she compares this energy

if so it can be called,

to what it used to be

she stands appalled.

I also learned the importance of “getting outside” to the sky and trees. It’s an escape from the too- familiar indoors. It brightens and opens the mind. Hopeful thoughts arise. I make plans for tomorrow.

Peace of mind is a new priority, that “still small space” we are supposed to hold within us. For the mind can hold a person hostage. Some find peace in meditation. I walk, swim, cycle, write, join friends, cultivate an inner life, talk to myself. The strong me counsels the weak me. I know myself, can say anything, and I’m always there.

I valued friends before but never so much as now. Shakespeare knew their value: “Grapple them to thy soul with hoops of steel.” Their presence comforts. They remove me from myself, the pettiness of illness. It need not be an elevated “other world” they take me to. There is pleasure and forgetfulness in everyday chat. What is said takes on an unexpected importance.

How do I manage “a different life”? I try to listen and to think about other lives. Our children make my world a better place. Occasionally I take valium, and regularly an anti-depressant. Lying against my husband’s warm back, he has become “my sleeping pill”. Old memories return. I read, reread and write down the sayings of others:

“Your emotions are just emotions. They are not you … you have a much deeper self than the bioelectric switchboard in your head.” (Phillip Hulme)

“A light heart is a wonderful armoury for living.” (Nikki Gemmell)

“Traveller, there is no path. Paths are made by walking.” (Antonio Machado)

Lance Armstrong managed his “” cancer in his own spectacular way. It had spread throughout his body. He recovered and won the Tour de France five times, to prove, he stated, “to what extent cancer can be beaten”. Despite his drug dealing and addiction, his lying and bullying, he established the Lance Armstrong Foundation to assist people with cancer. He always had time for them because “he had been there”. He must have engendered hope by example and by what he managed to do afterwards. Most people would be content with much less!

He says, in his book Every Second Counts:

You can alter any experience with your mind … it’s up to you to determine what the quality of each moment is …

What surviving cancer teaches you is the magnitude of your dependence on others, not just for self-definition, but for your existence …

The only things I can’t afford to lose are my life, and the lives of those I love …

The other side of Fear is Courage. A Vietnam veteran, John Glennon, in “This (Courageous) Life” in the Weekend Australian describes courage in a metaphoric way:

Courage lives in a small glass bottle. We all have one. No one knows when it will run out—or why—but it is finite. If you are lucky, you will never have to reach into the bottle and find it empty … Those who have had to look into their bottles too many times will never judge someone whose courage has simply run out.

I know I am not alone when everyone, even the unborn baby, must one day die. But we go through death separately, by ourselves.

Clive James, struggling with emphysema and cancer, too weak to fly home to Australia, remains productive and engaged as a writer, scholar and speaker. His last goal is to write “the perfect poem”. That gentle wordsmith stated he was not afraid of death. He had had a most fulfilling and fortunate life and to complain would be bad manners.

Nor can I complain of a “different life”. It may change again. It is a life. And I am in love with living. As Robert Frost wrote in his poem “Birches”, where he didn’t want the trees to fling him into Heaven: “Earth’s the right place for love: I don’t know where it’s likely to go better.”

Susan Sontag wanted to live life twice as energetically as most people. For her, “stillness was mortality”. Who would not want to claim citizenship and use of only their good passport?

Or have it returned.