Eating the Underworld (17 page)

With the original diagnosis, I went into fighter mode. It was a battle. I was going to win. A recurrence makes you question all that, throws everything into doubt. If it's a battle, then cancer has won the first
round. What does that make you—a loser? Of course it doesn't. But it's a hurdle you have to lift yourself over.

I ate some dried apricots yesterday. I don't know quite why I ate them except that, like mountains, they were there. I paid for it last night. I spent the night racked with painful spasms. It felt like someone reaching out and shaking me by the shoulders saying, ‘You've forgotten about pain have you? Well here's a little reminder.' I was struck, in fact—when the pain was over and I had the energy to be struck—by how easily I do forget pain. I remember it at an intellectual level, but I forget what it really feels like and what it does to me. And how grateful I am when it's over.

A friend phones me today, to apologise for not ringing. She says she has been scared and not known what to say or how to say something positive in the face of what was happening. I appreciate her honesty and thank her for it. I tell her that I've realised you don't have to think of ‘positive' things to say. Being the recipient of sunshiny inanities irritates the hell out of most people anyway.

I don't want to be treated with kid gloves. I know what I've got ahead of me, but I also know I'll deal with it. I don't need people to ‘lift' me up; I'm not depressed. But I
am
in the middle of a frightening experience. What's important, I say, is simply being there in some way—by phoning, sending cards, or visiting. The sense that people care about you is what counts in the end. We chat pleasantly for a while, then say goodbye. She doesn't ring again.

Pain

C
HEMOTHERAPY IS TWO WEEKS AWAY
. And it's not just the chemotherapy I'm not looking forward to, it's getting back into the whole hospital experience, of having things
done
to you, instead of doing them; the infantilisation that both you and the system enter into, the sheer number of discomforts you have to tolerate, the issues of being brave.

Being brave. This is something I've discovered the second time around. I am a brave person, I don't have to try to be brave. What I've been amazed by is how hard it's been for me to admit to being scared. Not to people who know me really well, but to people who know me less, but whose opinions I care about.

It happened while the Ca125 counts were rising. At each rise, I felt really scared, vulnerable, frightened. I wrestled with the issue of whether it was wimpish to be scared, whether I was being a panic merchant—after all, nothing had been proven yet, this could just be a false alarm. I remember telling Greg that I felt frightened and he replied that he would be terrified if he were facing cancer. I immediately relaxed.

I saw Greg yesterday and feel much better. I was still ‘Doris' and not a disease or a prognosis. He was able to say that this experience was scary for him too. It felt good. We're back to being real people again. There's no infection in the drainage wound and he said the bleeding should stop in a few days.

It's funny how superstitious you get in situations like this. Sitting in Greg's waiting room, I opened, at random, a poetry book I'd brought to read. The book
fell open at a poem called ‘She Lived'. Yes! I thought to myself, feeling ridiculously light-hearted.

Today, following a yen for something sweet and crunchy, I find a box of Chinese fortune cookies in the cupboard. I break one open, and in the split second before I read it, feel a sudden, totally irrational anxiety. What will it say? What it actually says is, ‘This insert has a protective coating.' After a moment's puzzlement, I turn it over and read, ‘Your future is as boundless as heaven.'

It's wig-buying time. The idea is that you buy your wig while you still have your own hair, so that you can match it. I discover that longish, curly-haired wigs that look real are thin on the ground. On your head, they become the reincarnation of eighties big-hair, mutated and gone wild, like those freak pumpkins that grow to six times their normal size. I do, however, find a cheap, spiky Tina Turner style that looks racily wild and is very flattering.

I still can't really imagine losing my hair; it feels so much an integral part of me. Although, as Martin points out, think of the time I'll save in the shower and the money I'll save on hair products. Amantha, in a similar vein—and demonstrating an uncanny knack for positive reframing—says, referring to the insurance-subsidised time I'll be taking off for chemo: ‘Think of it as a writing grant.'

They say your hair grows back thicker and curlier after chemo. This opens up a whole new possibility—chemo as an exquisitely expensive hair treatment. Only available in certain, selected salons.

In truth though, I'm terrified of losing my hair. It feels like such a stripping bare of myself. When I look in the mirror, what will I see? And while I never felt that I was losing my femininity with the loss of my uterus or ovaries, I wonder if I'll lose it with my hair—the female equivalent of Samson.

And yet it occurs to me that this is also like one of those ancient purification rites. Hair is cut or shaved off at those ceremonies too, signifying the shift from one role to another. I like thinking of it like this; as part of a ritual where you cross—cleansed and hairless—towards renewal.

Taxol, the drug responsible for the hair loss, comes from a tree—the Pacific yew. It grows along the rim of the Pacific Ocean in America. I look up yews and find that traditionally they have been considered among the most sacred of trees. They were associated with rebirth and planted in graveyards because of their reminder of the eternal circle.

This comforts me. I have always liked the thought that my chemotherapy comes courtesy of a tree, with their yearly renewal—seemingly dying each winter, only to revive in spring. I feel seriously relieved too that they've now found a way to extract Taxol's active ingredient without harming the tree. I hate the thought of a tree being killed.

I alternate these thoughts, though, with feeling just plain scared of what lies ahead. Two doctors who find out I'm going to be on Taxol instead of the lighter chemo both purse their lips and make depressing little tut-tut sounds about high toxicity and whether
my body will be able to take it. This, of course, is just what I need right now.

I see Jim, my oncologist, again today. It's much better than last time. I deliver my speech about medical ‘truths' and positive interpretations and he listens and says he'll be happy to do that. As I am standing by the receptionist's desk before leaving, he passes by, touches me on the shoulder and says, ‘You'll be alright.' It's a warming gesture. I am struck all over again by the power of simple, human contact.

The wound from my drainage tube has finally stopped bleeding. It feels wonderful to be able to take the bandage off; as if it's been the last impediment to healing. I go for daily walks and can feel myself getting stronger and fitter every day. Although, as I luxuriate in this new-found robustness, it crosses my mind that it's a bit like fattening up a turkey for Christmas.

We've organised a date for chemo to begin. It will be in March, nearly a month away, in the first weeks of autumn. It's time to make myself an hypnotic tape for chemo. As with surgery, I know that hypnosis helps minimise the side-effects of chemotherapy.

I'll put in suggestions of the chemo as healing energy and focus on welcoming it in and having it work in harmony with my body.

I calculate the dates of my six chemo sessions. If I go through them as quickly as is possible, the last session falls on the day after my birthday. That's what I want to do. Celebrate my birthday, knowing that it also celebrates the end of chemo.

The hypnotic tape must be working. I wake up this
morning and notice that I'm feeling different. I'm thinking of the chemo as an ally, rather than something to be feared. The phrase ‘Welcome Taxol' keeps floating through my mind, as if I am opening the door to welcome a good friend.

I find out about an amazing website today—oncolink. As an internet moron, most websites are amazing to me, but this one is exactly what I need. It co-ordinates cancer-related information and websites, and through it I discover the ovarian cancer discussion list. ‘List', I discover, is cyber language for group and the list's formal title is Ovarian Problems Discussion List. I'm thrilled.

I'd like to be part of a support group, but I'm in an odd position: any support group I joined in Melbourne would have my patients in it—difficult for them and difficult for me. An online support group for women who have ovarian cancer is ideal.

When I join and introduce myself, I am struck by the warmth and vibrancy of these women. It's definitely not an average group—they're educated, intelligent and active in exploring treatment options. Bright, lively minds as well as hearts. And there's a wealth of knowledge as people share the results of their research and other useful issues. I also get all my best jokes from this group.

On learning that I'm about to start chemotherapy,
group members write to tell me to drink lots of water. Kathy tells me of a relevant research paper which she found and followed. She drank increasing amounts of water for each successive chemo session and the chemo side-effects became milder and milder. She gives me guidelines as to how much to drink. I gulp when I read the amount—four litres—and think, no wonder she signs herself Kathy the Camel. But Kathy writes back to reassure me that it's do-able. The trick, she says, is to carry a water bottle with you and take constant sips. It's the small, practical things like this that the hospital system often doesn't tell you, so it's wonderful to have this sorority to journey with.

And finally, I've worked out a pattern for a hat that doesn't look like a tea cosy. Amantha has made a prototype for me which looks terrific. I immediately order a whole slew of them from my own personal cottage industrialist. Amantha looks aghast at the number. ‘Do you really need them all?' she asks weakly. I nod ruthlessly. I want them all. I want all the colours of the rainbow. I am determined to be surrounded by colour over these months.

The hats are brilliant. They're light, comfortable, easy to make and they look fantastic. Every time I leave the house, I have people trailing after me to ask where I bought my hat. I feel like a glamour girl from
Vogue
.

I'm still trying to imagine what it will be like to have no hair. Will I walk around the house bald, or will I feel the need to wear a hat or wig even when I'm by myself? I simply can't get my mind around it. I was an
ugly duckling as a teenager. I used to hide behind my hair. A bad haircut would give me the urge to lock myself in the cupboard for weeks, until it grew out. I used to straighten it, iron it, blowdry it and otherwise torture it with a stunning variety of sadistically conceived techniques. If my hair looked good, I felt good. If it didn't, it was paper-bag-over-the-head time. The intervening years have given me some small sense of perspective about hair—I don't immediately head for the nearest dark, enclosed space when my hairdresser cuts my hair too short—but being bald is still going to be distinctly character-building.

A patient whom I haven't seen for years phones me today. She's concerned because she needs more chemotherapy for recurrent ovarian cancer. She also obviously needs to talk about how difficult the chemotherapy has been for her. She doesn't know that I'm facing it myself. I feel a real struggle between the therapist in me, who would naturally invite her to talk, and the me who's awaiting chemotherapy and wants to say, ‘No! Don't tell me how bad chemotherapy is. I don't want to know.' The therapist wins out and I talk with her for a while about her treatment and possible strategies for the future.

Keeping yourself separate from other people's experiences is one of the hardest things with this illness. You hear of someone having a bad time and you automatically think: will that be me? You read an account of someone succumbing to cancer and you feel depressed; you read of someone surviving and you feel elated. It's as if your vulnerability and uncertainty have
thinned the boundaries between you and others, so that they are more permeable than usual.

I have a long talk with Amantha today. It's hard for her. As well as worrying about me, she has her own worries and feels they're dwarfed by what I'm going through. She thinks she doesn't have the right to worry about them. It's the old comparison game, usually about as helpful as the ‘think of the starving children in Africa' gambit when you push your plate away with uneaten food.

Three days to go until I start chemo. Three days before everything changes and I can't go back. I am reminded of the old Ghost Train at Luna Park. You get into the carriage. It starts to move down the track. You know that it's going to burst through that door into darkness, as if you had smashed through a movie screen into another reality. It will jolt into different speeds, shock you with unexpected pauses, accelerations beyond breath. You veer and turn. You don't know where you are anymore.

But this is why you took the ride, you remember. You rock around corners, one vista flicks disconcertingly into another. You stop trying to orient yourself. And then just as you are prepared to be lost forever, in a sudden jerking swerve, you are swept through walls that turn out to be doors, into the sudden oddness of the normal world.