Eating the Underworld (22 page)

Her memories of our home life also differ vastly from mine; from the descriptions of its emotional atmosphere to the more concrete details, such as her memory that my mother did not want anyone cooking in the kitchen except herself. Lily describes envying children who were able to cook at home. I don't remember a prohibition on either of us in the kitchen. I have clear memories of polishing my cooking skills in our childhood home. Irish stew and
blancmange
were among the favourites I regularly
served to the family. They seemed unutterably exotic to me, compared with our usual fare of
klops, sauerkraut, gefilte fish.

These differences in memory are testimony to the complexity of inner life and the way it colours and shapes our perceptions of outer life. Psychologists have known for years that fantasy, unconscious needs and re-interpretation of events all affect our memories of past and even recent events. It is confusing, disorienting. And yet in this profusion of difference, our own experience is all that we have.

This book began with a need to write about my mother, to add to her memory. It has taken me into territory I never expected to explore publicly. It has been discomforting, disturbing and distressing at times. I have had doubts, flinched from revealing myself and my family in this way. But it has been like many a journey—the first step taken with no way of knowing where the road will lead you. One of the things I have discovered as a traveller, however, is that I must honour my own voice, my own truths. Knowing that they are all I can own and that as I give them form, they in turn become part of a larger mosaic. A twisting, turning pattern of many stories, many truths that taken together form that greater story that each of us spends a lifetime trying to understand.

Chemotherapy

I'
M QUITE BALD NOW
, although I still have my eyebrows and eyelashes. It's all happened over a couple of days. To my amazement, I'm beginning to quite like the way I look without hair. Very
Star Trek
-ish. But also, there's a kind of elegance to it. It's as if I can see my face more clearly, more purely.

In the shower today I notice that my underarm and pubic hair have nearly gone. My legs too are hairless and feel incredibly smooth. Obviously, one of the hidden benefits of chemotherapy is no more shaving or depilatory cream.

For the first time, I also notice a bit of tingling and numbness in the tips of my fingers; the way they would feel if you had been squeezing them tightly for a while, or thawing them out from extreme cold. This must be neuropathy—the nerve damage that comes from the effect of Taxol on the nerve endings. It almost feels as if my fingers are turning into twigs, like the trees that Taxol comes from.

Martin took some photos of me in my new hats last weekend and they've just come back. They're marvellous; the best I've seen. It's amazing for me to look at them, such a transformation. As if I'm seeing myself for the first time without a cloud of hair to hide behind.

A strange thought occurs to me today. I suddenly realise that if I could go back to last year and wipe out the recurrence before it started, I wouldn't choose to do it. This thought startles me. Really startles me. It feels like being on a journey; some strange trek into an underground country. But it's a journey that I'm
supposed to be on. And even though it's dangerous, it doesn't feel like one that I'm going to die on. I'm sure everything would feel different if it did. That was the terrifying thing about this recurrence—being faced with the possibility that this could kill me. But now I don't think that's going to happen.

When did this transformation happen, I wonder? Somewhere along the line I have shifted from the terror of seeing my survival statistics so unexpectedly down-graded, to a sense that it will be alright. I can't pinpoint the moment; there's no event flagging it and no particular reason. It's not as if my new prognosis has changed over the last couple of months. And yet, somewhere in my head, it has.

Perhaps it's just a natural human resilience. You find ways to adapt, to function in any situation. Everything becomes relative. When you think you've got a ninety-five percent chance of cure, a sudden drop to fifty-to-eighty percent seems terrible. But when you're settled into the new category, you start thinking: hey, this is workable.

And now that I've got used to the new status quo, it's almost like an adventure. The things that most terrified me have already happened—the recurrence, the first chemo, the loss of my hair—and I've survived them. So I'm free now to simply explore the strangeness of it all, to wander around the odd new surroundings.

There is also a feeling that is difficult to put into words without sounding fatalistic, which I'm not. It is a sense that somehow this is all part of a story, my story.
It's not that I am a depersonalised actor in a play; on the contrary, the experience is immediate and deeply personal. It's that these events form part of a
narrative
and the subject matter is my life. It's a story that I can't fully see right now but one that I'll be able to. A year from now, two, three, however many years, I imagine being able to look back and say, ‘Aha,
that's
what it was about! If
x
hadn't happened,
y
would never have eventuated.
This
is where the story's led to!' I don't mean this in the psychological sense, as in the search for underlying causes, but rather in the pure narrative sense, the discovery of plot unfolding.

It's an intensely comforting feeling. Being part of a story always is. It says there is meaning, reason, the opposite of chaos. And now that I've claimed it for my story, the beast seems tamer, less frightening. I'm harnessing it with that most ancient of magics, the storyteller's spell. I'm taking control.

I've read that you lose a huge proportion of bodily heat through your head. That knowledge is now no longer academic. I'm astonished by how cold my head gets and how cold it makes the rest of me feel. In bed at night, all of the rest of me is tucked up in an eider-down while my head feels like a naked baby hatchling on the pillow.

Tonight I wrap a long black scarf around my head for warmth. On the way to the bathroom I glance absently in the mirror. Uncle Fester, of the Addams Family, is looking back at me as startled as I am. We both burst into laughter. I note that there is money to be made hiring myself out for Halloween.

The cold reminds me though, in a very literal way, how much less ‘buffered' I am. I feel open to the elements in a way which is totally new. I am used to thinking of ‘naked' as being the most physically exposed I can get. And yet here is a step beyond naked.

I am discovering how hair has clothed and protected me in ways I hadn't even dreamed of. My eyelashes, guarding my eyes. The fine hairs inside my nostrils, a barrier for microscopic invaders. The hair on my head nurturing the delicate temperature of my body.

It is the stripping of a second layer of skin; a layer I have found out about only through its absence and it is unnerving. There are gaps, it is saying. Broken fences. There is less between you and the outside than you imagined. And the outside is trying to move in.

Eve came over for a visit today. Eve and I first met over twenty years ago, in the night-time kitchen of a monastery. We were at a five-day, residential Elisabeth Kübler-Ross workshop for therapists, held in a monastery in the hills outside Melbourne. We've been close friends ever since.

Eve hasn't been able to get down much, but rings regularly, so we can have phone-visits. It's her first sight of me since I lost my hair. She really loves it and says I am looking wonderful. And it's true: everyone's saying that. It's the last thing I would have expected before starting chemo. It's bizarre really; how what you thought was going to be one thing turns out to be quite another. It reminds me of a story Eve once told me.

Back in mediaeval days, a poor peasant farmer loses his only horse. It has run off during the night and his
friends gather round to commiserate. ‘What a disaster,' they say, ‘now you won't be able to plough your field. What a terrible thing to happen.' The peasant responds by shaking his head, ‘'Tis neither good nor bad,' he says and won't be drawn any further.

A short time passes and the Lord of the Manor is gathering forces for a crusade. His men comb the district, appropriating all the peasants' horses. The peasant farmers are distraught, but there's nothing they can do. A few days after the Lord's sweep, the poor farmer's lost horse finds its way home. Now he is the only peasant farmer left with a horse. His fellow farmers gather around in envy. ‘How fortunate you are,' they say. ‘You must be the luckiest fellow. This is a wonderful thing.' The farmer shakes his head and says, ‘'Tis neither good nor bad.'

Some time later, the farmer's son goes for a ride on the horse, which bucks and throws him. The farmer's son breaks his leg and can no longer help the farmer with the harvest. His fellow farmers gather around to sympathise. ‘What a terrible thing to happen,' they say. ‘Now your fields will lie rotten. This is a disaster.' The farmer shakes his head. ‘'Tis neither good nor bad,' he says.

A few days later, the Lord's men are on another sweep of the district. This time, they are co-opting all the young men for the Lord's army. The peasant farmers' sons are dragged away to an uncertain fate, fighting in a foreign country. However, the poor peasant's son isn't taken; his broken leg would simply hinder the army. The peasants gather around
to congratulate the poor peasant. ‘This is astonishing,' they say, ‘you are blessed. We have lost our sons, but you still have yours. What a wonderful thing this is.' The peasant shakes his head and says (no prizes for guessing), ‘'Tis neither good nor bad …'

And so the story goes on, for as long as the teller has energy.

In my internet group lately, there's been a heated discussion over some of the more spurious New Age-type principles. One of the list members has been sending daily posts exhorting everyone to fight their cancer with ‘positive thoughts'. The posts contain enough woolly thinking to revolutionise Australia's sheep industry. They're full of extravagant claims, unbacked by research, and carry the zeal of a television evangelist. They drive me nuts. Virginia, Ina, Sima and I take turns in posting sane, rational rebuttals, along with requests for back-up data to prove the claims. None is forthcoming, of course, but I learn that the ‘delete' button is a brilliant device, which can solve many problems. The lack of this in real life is clearly one of the great oversights of Universes R Us.

I'm struck by the mix of attitudes in the group. People with late-stage disease and a couple of recurrences feel hopeful, and people with early-stage disease are often disabled with fear. The group is extraordinarily compassionate and supportive to all comers.

One woman writes that she was diagnosed with stage 1a, with a ninety-five percent chance of cure three years ago, and that she still spends most of each day paralysed with terror, petrified that the cancer might come back. The group posts back letters of support saying, ‘Yes, we understand. The diagnosis of cancer is a terrible shock. Of course you're upset. It takes time to get through it.' She writes back thanking everyone for the support and says no-one else understands.

I feel concern at her letter. To feel so incapacitated three years on from a very positive prognosis seems worrying. I have the feeling that she needs more than support, she needs therapy. The experience of illness has triggered issues that she needs more help in understanding or managing.

But I don't post this in. The writer sounds fragile and I'm not sure how she'd take the suggestion of therapy from a stranger. I don't know her and I don't want to upset her. And she is so obviously needy and drinking in the support. And so I say nothing.

Afterwards, I wonder if in ‘protecting' her, I did her a disservice. That in being careful not to upset her, I have actually failed her. It reminds me of how easy it is to fall into the trap of overprotecting the weak, so that they become even weaker. And how in the end, that weakness can become a kind of tyranny.

Reading her correspondence makes me remember how lucky I felt at the time of my diagnosis when I realised that my cancer was early-stage rather than late. When they heard I'd had cancer, people would say to
me, ‘How awful for you.' And I would say ‘No. No. It wasn't like that. It wasn't awful. It was amazing. I'm so lucky.' I could see them measuring me up for the straitjacket, or alternately elevating me to heroine of the year.

But I really did feel blessed; that I'd been given a miraculous second chance at life. This recurrence doesn't carry those happy certainties; it's taken longer to find my bearings with it. Occasionally, when I'm reading about ovarian cancer, I come across those deadly paragraphs that talk about how lethal recurrent ovarian cancer is and I get the ice-cubes in the stomach feeling. But generally I'm okay. I think there are enough exceptions in my case to give lots of room for hope.

A lot of the women in the group refer to ovarian cancer as the ‘Beast'—a ravening, devouring monster. I've never thought of it like that. The image I had of it in my head after my initial diagnosis—a bumbling, confused lout who postured a lot but hung around home—didn't change with my recurrence. Although there were no ovaries left, the tumour had attached itself to the closest thing to home: a piece of my bowel, just where the old ovary would have been. Perhaps if my tumour had been more widespread or inoperable, I'd also be thinking of it as the ‘Beast'?

I notice that one of the side-effects of chemo is that I've started to misread the printed word in very inventive ways. My most memorable experience of that was decades ago when I was a psychology student. I spotted a noticeboard saying that the department was
going to be showing a short film entitled,
The Calming Effects of Librarians on Wild Animals
. I was hugely excited by this and waited eagerly for the big day. That was when I discovered that the actual title of the film was
The Calming Effect of Librium
(a psychotropic drug)
on Wild Animals
. Today I read in the paper of a play entitled
The Ideas of March
and think, what a great title. Only to find that it is really the much more plebeian
Ides of March
. This new ability adds a touch of creative colour to the generally dismal daily news.

The cold symptoms are starting to clear up. I continue to be startled by the difference this makes to my energy levels. One of the delights of finishing chemo will be not having to worry about colds. Not that I won't get colds, but that I won't have to cotton-wool myself if I do.