Eating the Underworld (28 page)

The tiredness continues. As does the string of roadblocks, debacles and mishaps. One of my friends, as I woefully recite the string of things that have gone wrong lately, says to me, ‘Well, at least you've got your health.' I snap back, ‘
You've
got your health. I don't know what I've got.'

It is just beginning to dawn on me what I have actually been wrestling with these past few months. While I've been focused on getting through the treatment, there hasn't been the room to let myself think about the ‘what ifs'. What if the treatment fails? What if my tumour recurred because it's unusually persistent and it's not going to take this lying down? What if my recurrence-which-wasn't-supposed-to-happen means that I am indeed in that group of women who will die from ovarian cancer? The
questions flood me and I have no answers. No-one has the answers.

I get up this morning and realise that I'm beginning to feel better. I'm starting to move out of that awful trough of despair. I'm still very weak energy-wise and still emotionally drained, but I'm beginning to recover particles of my former spirit.

I am reading a piece about the side-effects of some medication. ‘Can lead to bloating,' it says. In my chemo-brained state, I misread it as ‘floating'. My imagination goes into overdrive. I immediately see battalions of bald women gently ballooning into the sky.

Another day, and I'm definitely feeling better. Looking back, it seems as if I was in another universe over those last few days of depression; like walking along and suddenly stepping into a puddle that turns out to be head-high.

I wrote a poem today, plus half of another one. They just came out. And they're good. It's such a strange and lovely feeling; like reclaiming myself. In the last weeks of chemo, I wasn't even able to read poetry; I didn't have the concentration to do it justice and I didn't want to read poetry when I couldn't ‘hear' it properly.

I went for a walk on the beach today with Eve. It was luxurious, like coming back to the world again. Although, after half an hour's walking, the soles of my feet felt as if I were walking on coals—the neuropathy kicking in. All the thrills of a fire-walk, without the danger.

I have my CT scan and chest x-ray today. I turn up at the hospital and am offered the first of the four
revolting cups of aniseed-disguised-with-orange-cordial-flavoured liquid that I have to imbibe. I'm then led to a cubicle to engage in the entertaining sport of attempting to tie up the hundred ribbons of my hospital gown (points lost for not matching each ribbon with its opposite partner) with my hands behind my back. Somewhere I imagine there is an audience of giant squids, laughing uproariously at videos of squirming hospital patients, and congratulating their director on his success at infiltrating this hilarious design into human hospitals around the world.

The CT scan itself is a fairly innocuous experience. You lie on a narrow couch and are slowly rolled through an archway containing the scanning machinery. Lights flash and revolve around the archway in what could be quite attractive patterns if you weren't so uncomfortable from having to hold your arms stiffly above your head. Rather disconcertingly, the walls speak to you—the technicians having scarpered to safety once the scan starts rolling. The walls have extremely well-modulated voices and tell you to do things like breathe, hold your breath, breathe, hold your breath. Their imagination is clearly limited. At a party, they would be the bore in the corner, inspiring more and more florid techniques of avoidance.

Today, I ring up Jim's office to find out the results of the scan. I'm fully expecting the receptionist to say cheerfully, ‘Yes, it's fine.' Instead, she says it's too complex to understand and I'll have to wait until tomorrow morning when Jim's in and can ring me. This immediately sets off alarm bells.

In Greg's office, when my blood tests are normal, the receptionist happily tells me so. In the last year, I've discovered that when they're not normal, she'll say, ‘Doctor hasn't seen them yet, so you'll have to wait till he's looked at them.' This is code for ‘Something is wrong and I'm not allowed to tell you what.' It leaves you hanging in suspense for however many hours it takes the doctor to get back to you, all the while not knowing what is wrong and suspecting the worst. Does this same spy-talk apply to Jim's practice?

I'm immediately catapulted back into the country of Waiting for Bad News. I've forgotten how ghastly it feels. I rent three videos to distract myself and resort to a sleeping tablet to get to sleep.

I wake this morning with fear pulling at my stomach, as if there are strings in there and someone's pulled too tight. There's only an hour or two to wait until I can talk to Jim. It's like all the waiting I did in the lead-up to the recurrence.

The phone rings. It's Jim's secretary. Jim has looked at the report and pronounced it okay. I feel weak with relief. Quite literally. My bones and muscles take on the consistency of jellyfish. An hour later, I still feel as if I've run a twenty-mile marathon.

I look in the mirror today, and to my amazed delight I can see tiny hairs beginning to sprout on my scalp, like the first buds of spring. It's coming back! My hair is really coming back! I want to hug those tiny sprouts. I want to throw them a party and feed them chocolate cake and champagne. I want to hang banners all around the house. I'm going to be normal again!

I see Greg today for the first time since he operated on me for the recurrence. It's a formal marking of my graduation from being a chemotherapy patient. It will be strange to be back there on the old examination couch; as if I have stepped out of time and come back again.

Greg tells me that from now on, he and Jim will alternately take my three-monthly check-up sessions. If the tumour returns, Greg says, then unless I am very lucky, surgery wouldn't be appropriate and I'd need more chemotherapy with Jim. He pauses. Then adds, but I might be lucky and have it come back in a form amenable to surgery. Another pause. And then he says, or maybe I might be really lucky and not have it come back at all.

‘That's the plan,' I say.

I see Jim today, also as part of my ‘graduation' ceremony. I'm more nervous than I anticipated as I flip through magazines in his pale, streamlined waiting room. He smiles broadly when he sees me. My counts are all back to normal. I'm surprised at how strong the wave of relief is, like realising you've been holding your breath only when you release it.

With some cancers, after five years of remission, you can say you are cured. Ovarian cancer is not like that. It can come back after six years, ten years, sixteen … Jim is optimistic today. He's really pleased with my progress through chemotherapy. ‘You're in remission,' he says, ‘and with luck, there's a good chance that you'll stay that way.' My heart feels like a balloon that has been let off its anchor.

I look up just at that instant, to see a brightly coloured parrot perched on a branch directly outside the window. As I watch, it spreads its wings, like an upside-down rainbow, and flies high into the sky

The Examination Couch

M
Y HAIR IS MAKING VISIBLE PROGRESS
. There are also tiny sprouts of hair on my eyebrows and eyelashes. Only a few days ago, I had to squint closely to see them and still wasn't sure whether I was imagining things. Now they're clearly here. The first I knew about my returning eyebrows was when I spent ten minutes trying to wipe a black speck off my skin. It took that long to work out that it was actually a returning hair. It's incredibly exciting.

A couple of weeks later and my eyebrows are now visible as a definite, fine line of tiny hairs. The same for my eyelashes. Each morning, I get a thrill out of looking at them and seeing their progress. It's moving to see the extraordinary regeneration, the optimism of the body. It's like the new green growth in the blackened aftermath of a bushfire.

I think I am only now digesting the experience of the last few months. It's like being at the theatre. While the show's on, you're fully absorbed in it. It's only after it's over and you're walking home that you have the space to analyse and understand it.

When I had my initial diagnosis, I felt sure I was cured. I didn't doubt that I'd be around years from now. This time, certainty isn't so easy. Right now I feel a genuine ‘I don't know' about that. Maybe I will be around, maybe I won't. It's not something I brood on or am preoccupied by, but it's there in a very real way.

I was trying to talk about this feeling, and how strange it is, to a friend. She came out with the old chestnut of, ‘But no-one knows whether they're going to be alive in two years' time. Any of us could get run
over by a bus tomorrow.' That line irritates the hell out of me. Of course it's true, but it's also meaningless. For people who haven't faced death, this theorising is just an abstraction. It doesn't touch them in any real way. Sure, at an intellectual level, they can recognise that it's possible that they could get hit by a bus tomorrow, but it doesn't have any emotional reality for them. Whereas, for those of us who have actually come face to face with death, the uncertainty is far from abstract. We feel it at a gut level—a profoundly shattering knowledge that we must find a way to live with or move through. It is only when you live with this uncertainty that you realise how automatically the other crowd, to whom you belonged less than a year ago, takes life for granted as they effortlessly make plans for next year, next anniversary, next holidays, next whatever.

It's a while since I've written in my journal. The deluge of problems continues. I seem to have spent my time trouble-shooting. Every time I think the sun has finally made it out, another downpour arrives. I feel distraught at times. This is not how I imagined it would be.

Today Amantha comes into the house looking worried. She's just returned from a routine visit to her doctor, to check up on a few minor symptoms. The doctor has suggested an ultrasound.

‘Do they hurt?' Amantha asks me.

‘No,' I say. ‘They're painless.'

I look at the ultrasound request. My heart contracts. It's a request for an ultrasound of the ovaries.

‘What does your doctor want this for?' I ask.

Amantha shrugs. ‘She thinks I might have cysts.'

I make myself relax again. Ovarian cysts are common and usually harmless. Nothing to worry about, I tell myself.

A week goes by. Amantha is feeling slightly nervous about the ultrasound. I come with her to keep her company. I am sitting in the waiting room when Amantha comes out, looking even more worried.

The ultrasound has shown up a cyst. She has to go back to her doctor to find out more.

‘What does it mean?' Amantha asks me.

I reassure her; tell her that everyone has cysts at one time or another. They're usually pretty harmless. Most women don't know they have them. They come and they go without causing problems.

It's a week or two till Amantha gets an appointment with her doctor. I go with her this time.

The doctor studies the radiologist's report carefully.

‘It's an ovarian cyst,' she says. It's not totally clear what kind it is, but the doctor wants to get it checked out further. ‘So I'm going to refer Amantha to Greg Henderson,' she says. And the floor drops away from under me.

Greg, my gyn-oncologist. Amantha is being referred to a cancer specialist.

‘Is the cyst dangerous?' I ask, struggling to catch my breath.

‘Probably not,' she says cautiously. ‘But in view of your history, I just want to be sure.'

In view of my history.

In a small percentage of women, ovarian cancer is hereditary. It's something I can't bear thinking about. Can't bear the possibility of. Can't bear even the thought of anything happening to Amantha.

As we leave the doctor's office, Amantha is terrified. ‘Have I got cancer?' she asks. ‘Have I got cancer?'

I have to stay calm for Amantha. ‘The doctor's just being super cautious,' I say. ‘It'll turn out to be nothing.' Amantha relaxes a little. Inwardly, I am jelly.

And so a week later, we find ourselves at Greg's. Watching Amantha disappear into his office is like entering a nightmare. It feels like hours before Greg reappears to beckon me in.

‘It looks okay to me,' he says. He thinks it's a benign, garden-variety cyst. You can't be totally sure without a biopsy, he explains, but he doesn't want to do anything so invasive at this point. We'll adopt a ‘watch and wait' procedure. He wants Amantha to go back and have a second ultrasound in a couple of months. Hopefully the cyst will have disappeared by then. If it hasn't or has grown bigger, then surgical investigation is on the cards.

Amantha is still frightened as we leave Greg's office. Inside, so am I.

The two months crawl by. The second ultrasound is scheduled for the day before my poetry book is launched. I can't even think about the launch. I sit on my chair in the clinic's waiting room willing the door to open. Finally it does. Amantha comes out smiling. Greg, thank heavens, thank goodness, thank everything, was right.

In the Constellation of the Crab
is launched today. I think up my speech on the way in, still intoxicated with relief about Amantha. There are lots of people and a wonderful feeling all around. The Anti-Cancer Council did a great job. I come home exhausted, but buoyant. The book has been so important for me. It's been my way of creating something transcendent out of this experience; something that records it, as an explorer would, but also rises above it, sees the other possibilities in it, the link to a wider universe.

I think back to the experience of being wheeled to the operating theatre just nine months ago: I am groggy, scared and cold under the thin hospital blanket. The hospital ceiling flows past me. I am upside down in the world. And then suddenly ‘On the Way to the Operating Theatre', the poem I wrote about this same experience two years earlier, fills my mind. The comforting warmth that floods through me is unexpected. It is like a greeting, a companion, a voice saying, ‘Someone has been here before; you are not alone.' It was me, of course, who had been there before, but the voice is saying much more than that. It is throwing me a line, a connection, to a vehicle far larger and more mysterious than a jolting hospital trolley. Suddenly I am on a
journey
. My companions are Odysseus, Orpheus and the thousand others in myth, fairytale and history who have been prepared to lose sight of the shore. Who better to travel with? And who knows what is there to be found?

Greg is ready to resume writing our book on ovarian cancer. I meet him to talk about how to
plan it. It's a strange feeling. I've suddenly switched from being a patient to being a writing colleague again. It's unsettling. It's like coming in from a war zone and being suddenly transported into normal life with no debriefing. For the last few months, I have been Doris the cancer patient, now I'm not. That's not a loss. I never liked being Doris the cancer patient. The problem is that now I am suddenly Doris who?

The question mark is my question mark. Everyone else thinks I am just Doris again. I seem to be the only one who doesn't know who I am. But no, it is not that. It is the reverse. It's not that everyone else knows who I am, it's that I am the only one who knows who I am not.

Greg and I talk again about my switching doctors. We were on the verge of doing this when the recurrence struck. Greg has someone in mind for me. It's important to do it and I want to, but I also feel a little sad and apprehensive. How will I get on with this new person? What will he be like? It's been so comforting having someone who knows me. I feel like the new kid in school again.

John, my new gyn-oncologist, is in a different hospital on the other side of town. He's a calm, thoughtful man whom I like instantly. He considers my questions and answers them fully, giving the sense that he has all the time in the world. As the standard gyn-oncologist's schedule reads like the average work week compressed into a day, the all-the-time-in-the-world impression is prize-worthy. I like his responses too. There's a quiet optimism about them; although,
he notes, of course, that the road ahead is full of uncertainties. I feel enormously relieved as I leave his office.

Life post-cancer is strange. In a way, it's stranger than life during cancer. Then at least, you know what you're doing. Cancer fills your life like a school schedule—doctor's appointments, blood test appointments, treatments, scans, regimes to follow. Your progress is updated frequently. There are regular exams and feedback follows. You know where you are.

Post-cancer, there are no road maps. I'm still feeling tired. Much more tired than I had imagined I would be. And my whole body seems to have slowed down. Keeping at my normal weight requires more effort than it used to, as if even my metabolism is sluggish. Everyone imagines that cancer leaves you transparently thin. The women on my email list laugh hollowly at this assertion. They write, bemoaning the non-dispersable pounds that have piled on during and post chemotherapy. They diet and exercise and still remain frustratingly chubby-cheeked, while everyone tells them how well they look. Translation: you don't look like the death's head I expected. Their doctors cheerily tell them not to slim down; that fat is good. Translation: at the end, when the cancer has spread and obstructed your bowel and you can't eat, that fat will keep you alive a little longer. This does not make them feel good. Some women write that their oncologists have told them that their difficulty in losing weight is quite common after this chemotherapy. The tiredness everyone seems to take for granted.

My hair is beginning to look like one of those army
buzz cuts; very trendy at the moment. I'm still wearing hats a lot, but when I remove them, everyone assumes I have been to one of those super-expensive, beyond chic hairdressing salons. The sight of a shaved head is still relatively rare in the Melbourne I frequent, but I am told there are suburbs in Sydney where I would already be passé. I also have a lot of very fine blonde fuzz on my face, which probably wouldn't be trendy anywhere. This, I believe, is a passing phase as my hair follicles everywhere receive their get-out-of-jail card.

Apart from the sense of physical weakness, I'm shaky emotionally as well. As I read about ovarian cancer, I continue to come across those sentences that say, ‘Once ovarian cancer has recurred, it is deemed to be incurable.' And my heart jolts. Is that what I am? Incurable? No, of course I can't be. And I read myself my personal Pollyanna tract, the one that goes: ‘It was just a left-over teensy weensy single seed and it's gone now and you've had chemo, so it's never coming back again.' Some days I believe it, some days I don't and some days I manage to believe both things at once.

I am sitting at my desk today, working through a pile of paperwork, when the phone rings. It's from the Australian Society of Hypnosis. They're having their national conference at Alice Springs and Uluru; will I chair a symposium there? Yes, I say immediately. I have never been to the Northern Territory, although I've occasionally thought of doing so.

We work out arrangements, what the symposium will be about, what I'll have to do. It's in two years' time, in September, when the Territory is supposed to
be at its best. I put the phone down. The Red Centre. What will it be like? I feel a sense of excitement. And then suddenly I think: two years. Will I still be here? And then I think, what the hell. If I'm not, they'll just have to find someone else to chair the symposium.

It's an odd flip, one that I've repeated before. One minute I am the parachutist—jittery, peering terrified over the edge of the hatch. The next minute I've jumped, trusted to Fate; the parachute will either open or it won't.

But the dislocation of that moment keeps revisiting me. I've made a plan for two years' time and I don't know whether I'll be alive or not. It is totally disorienting; a gap in what was supposed to be a smoothly continuous future and I can't join it together. And just as the tongue seeks out the crevice left by an excised tooth, so my mind keeps returning to it, trying to put it back. But it is as if I've lost a piece of the puzzle; a piece that I never even noticed before. Sometimes I feel that I am down on my knees, hunting for it, muttering to myself over and over, ‘Where is it …? What happened to …?'