Eating the Underworld (23 page)

Jim's description of the way colds can slide swiftly into pneumonia when your immune system is down has left me paranoid about germs. I'm determined to finish chemo in the fastest time possible and I'm not letting any germs get in the way. I've never been obsessive, but I'm beginning to get a taste of it now. I can spot a person with a runny nose at a hundred paces. When I venture out into the flu-laden autumn world, I feel like a deer trapped in a volley of sharp-shooting coughs and sneezes.

This awareness of physical vulnerability plays hide-and-seek games in my mind. On the one hand, there is the me who has developed the hearing range of a radio telescope with regard to distant coughs. On the other, is the me who is reading today's paper—an
article on the outbreak of a rare and unpleasant infection. The journalist is cautioning people not to panic. The average person is quite safe from infection, he says. Only children, the elderly and those with impaired immune systems are at risk. Oh, I think, that's not me. I relax. Then sit up suddenly. Impaired immune systems—that
is
me!

I have to renew my driver's licence today. This means getting a photo taken for identification on the licence. A pause for thought ensues. Do I get photographed bald? Do I wear my Tina Turner wig? My hat? Heavy-duty decision-making here.

After an animated internal debate, I finally decide on the curly-haired wig that looks most like my old hair and the old me. As I put it on, I realise that this image bears no relation at all to what I really look like today and maybe none to what I will look like in a few months' time, a year. It's a strange feeling to realise that I don't know what I'll look like even six months down the track. My hair changes my face so much that I have visions of not even being able to identify myself in a police line-up. Which leads to the conclusion that this may possibly be the ideal time to commit a crime.

It is disorienting to have to rediscover my physical self. So many things I ‘knew' about myself—from what my face looked like to my levels of physical resilience—are in flux, up for grabs. And all of them are so intimately connected to the larger issue of ‘who am I?'

The only other time I can remember this odd jolt of physical redefinition is many decades ago. I must be
about nineteen. I have lost the pimples and pounds I piled on during my teenage years, but their image stays with me. I am coming home from university, walking past the large, polished windows of our house, when I suddenly catch sight of an attractive, young woman also walking up the path. She's pretty, I think, and am about to turn around to see who she is, when with a shock, I realise that she is me.

The breath-catching sense of discovering I am not who I thought I was is disconcerting. It's like living in a house all of your life and then suddenly discovering that three new doorways have appeared overnight. Where have they come from? What rooms do they lead to? How do they fit with the rest of the house? What will you put in them?

Time is going by so fast. This morning, I realise that another three days have disappeared without my noticing. After luxuriously sleeping in, I wake and thank God for the el cheapo insurance which is delivering this privilege. I bought it on a whim a few years ago, mainly because it was so cheap. It never occurred to me that I might actually end up using it; a charming denial based on my certain knowledge that I was not only immortal, but as physically durable as the bionic woman. It's provided a welcome financial cushion while I've been off work.

I'm lucky too to have my writing, a sense of my own strength and the possibility for hope about my future. That sounds unutterably sanctimonious, written down like that. But how else can you say it? I'm noticing how difficult it is to talk about the
positives in a situation like this without either using snappy humour or sounding as if you're lobbying for sainthood.

Just got the news that my blood count's okay and I'm having chemo tomorrow, which means that I'll be halfway through! I ring my friend Celia to tell her the news. We're both really excited about it, saying, ‘Terrific! Isn't that great!' As if I've won a prize. How odd, I suddenly think, to be celebrating the fact that I'm going to have chemo tomorrow. But it's not about that really. It's about the praise due to the body for its extraordinary work. It's been bouncing back, taking things in its stride, doing what it needs to do, healing itself in the face of this onslaught.

Last night, I dreamed that the women of my ovarian internet group were down by the sea. We were in an eerily beautiful place where the sea met the shore. We would go on walks there, our feet leaving tracks of light in the sand. Suddenly, one by one, the tracks vanished. I tried to find out what had happened, where the women were disappearing to, but no-one knew. I woke with a sense of icy, pervasive loss.

Some of the women I'm close to in the group aren't doing well. They're having relapses, their treatment isn't working. They've fought so hard, survived so much and with such grit and courage, that it's unbearable to know that the disease now seems unstoppable.

All of us in the group are trying to find words for our grief, our horror and the sheer rage at the unfairness of what is happening to our friends. A couple of women leave the group saying they can no longer bear the losses. We all understand what they are feeling.

A discussion opens up. Can the caring and support found in the group make up for this, the terrible, regular confrontation with death? Is it better not to make friends than to go through the pain of losing them one by one? It's a variant of the old argument about the risks of love. For us too, there is an additional sting—the torment of watching friends die is compounded by the knowledge that we have their disease.

I think I'm feeling stir-crazy. I'm frustrated by how little I do each day. This morning, I am wandering around making soup and wanting to feel ‘useful'; as if I have to be
doing
something in order to be useful. It's hard to go from someone who does demanding and intensive work, brings in good money and takes care of the family, to someone who sometimes doesn't have the energy to swat a gnat and spends most of her days lolling around reading or napping. That phrase ‘lolling around' is the give-away, isn't it. Do we think it hints at a distinctly Protestant work ethic? I mentally slap myself on the wrist and tell myself in greeting card-ese, that, as I loll around reading and napping, I am being useful simply by
being
. This doesn't wash with the Protestants.

This need to make myself useful is irritating. I don't normally have any problem in lounging around with a
book. And of course, it's only now that I'm discovering why—because I've
paid
for it by working beforehand. I become intrigued by the question of these internal bank accounts: how has the pay scale been determined, who is in charge of the valuations and has it been indexed for inflation?

I'm really feeling the fatigue these days. It's an odd, unnatural tiredness. Your brain can see that you have spent a fair amount of time hanging around the house doing nothing, but your body is insisting, in an outraged voice, that it's actually just come back from an arduous five-day hike.

The lack of energy has been increasing (or is that decreasing?) exponentially. It's currently at a particularly aggravating level, where I don't have enough energy to do very much, but I do have enough energy to feel frustrated at not doing much. Occasionally, I find myself wondering what energy actually
is
. It's so intangible and yet so clearly either there or not there. How is it created, transformed, blocked? These arcane thought excursions are rare, however. Most of the time, I just feel like a horse champing at the bit, saying, ‘Enough already! Get this off me!'

I feel fed-up and irritated with the whole experience. I've just been looking back over my journal and reading my notes about this as a transformative experience. Well right now, I think ‘transformative, shmormative'. Who was that woman who wrote those words? Some Pollyanna-freak? Some saint? Do I know her? I'm pissed off, is what I am. I want to be out there doing the things my friends are doing and not having
to think about chemotherapy or cancer. I want my hair back, my eyelashes, my taste-buds, my energy, my
self
. I'm sick of needles, side-effects, drips. I'm sick of it all.

This irritation wasn't something I felt at the beginning. Then, I was too busy—there was too much to take in, too much to do. I was frightened, everything was new. I'm an old hand now, for whom familiarity has brought contempt. I'm free to feel annoyed now that I've decided my life is no longer hanging in the balance.

And as well, this is the middle part of the journey; the part with its own particular set of difficulties. You're not faced with the challenges of the initial upheaval that demand to be ‘transformative'. You're not ‘almost through' with it yet either, adrenalised by the buzz of the home-stretch. You're still trudging along what has become a familiar though not enjoyable track, coping with the ‘drudge' part of the journey. You've got a fair bit behind you, but you've got a fair way to go. And the novelty has definitely worn off.

Even friends respond differently to this part of the journey. It's old hat to them now and phone calls and visits are much less frequent. Most of them have determined that I'm coping well and concluded that that means I need them less. A lot of them effectively disappear. Only a handful of friends make the effort to keep in regular contact. There are times when I feel forgotten and isolated.

Even as I write this though, I begin to feel ashamed of myself for griping like this. I'm lucky to have the
luxury of feeling irritated at this stage. Some of the women on my email list have never even made it into remission. I think of what they must live with and anything I'm going through pales immediately. This has to be one of the down-sides of the list; you can't even get in a decent burst of self-pity.

It's like living that old saying—that there's always someone better to compare yourself with and always someone worse. It's an odd oscillation. When you're in one mode, you disown the other. On one side of the spectrum it feels shameful and whingeing to be complaining in the face of suffering worse than yours. On the other side, you feel resentful and miserable, comparing yourself with friends who are brimming with health and carrying on uninterrupted lives. The complicated part is that both experiences are valid. The trick is in allowing them to be so.

I'm due for my blood test this morning, to see if I can have my fourth chemo this Friday. I have my blood taken at a pathology centre close by. By now, I have the nurses pegged out. I know which of them will leave me feeling like a failed needle-point sampler and which are the ones who are ‘good' at veins. I have their names memorised; I recite them to myself with a fervour greater than that of the most ardent football fan.

To my dismay, Megan, one of the good ones, left last month. Now there is only Kathy, the snake-charmer of
veins. I ring up airily to check what time she's on this morning. Disaster. She's not working here today. Where is she? I ask. The receptionist is curious. Perhaps she has picked up the edge of panic in my voice. ‘Are you a friend?' she asks.

‘No,' I reply, ‘a fan.'

This does not seem to reassure her. Doubtfully, she provides me with the phone number of the other clinic.

I ring to make sure that Kathy is there. Kathy herself answers the phone. I explain that I am following her from one clinic to the other. Even as I say this, I am aware that it sounds slightly odd. ‘It's just that you're so good with veins,' I add helpfully.

Kathy hesitates. I notice that my little speech is beginning to sound like the vampire's Mills and Boon.

Kathy has noticed it too. I can hear a slight wariness in her voice. Has she picked up an unusual stalker? Bravely, she tells me I can come in any time this morning. I respond with an exuberant ‘Wonderful! Wonderful!' that seems to startle her even more.