by Doris Brett
The words give me the sensation of swallowing eels. Death. For a couple of days, all I can think about is: will that be me? Then I regain my balance. Okay, I decide, you can look at this two ways. One: because my cancer recurred when so many don’t, you could say that it’s more aggressive or persistent than most. Bad news. Or, two: you could see it as simply a left-over seed that grew. It’s been removed, I’m going to have chemo to clean everything up and then I’m back to where I was two years ago, looking good.
I go for the latter interpretation. One of the advantages of not having statistics to hand is that you can create your own. I decide I’m going to create good ones.
Night Sweats
In that sweet weather we can’t remember,
it all comes back to me.
How the body slips hotly
again and again
into summer. It is the odd
sun of that other country,
further away than sleep,
further even than the dream
of the uses of hands and feet.
It is not the sea
that made us, but something about heat
and a life that we lived once, flickering,
unlimbed, the body in memory
shimmering, salt-slicked,
liquid as the thousand minds of fish.
I HAVE TIME OFF WORK, thank goodness. My disability insurance will kick in to cushion me over the next few months. I’m putting my practice on hold until treatment’s over. As a psychotherapist, you need energy and concentration. I don’t know how much of that I’ll have and I don’t want to give my patients less than they deserve. And, purely selfishly, I don’t want to tire myself out.
But I also don’t want this time to be lost time; something I just get through for the sake of getting through. Years ago I read a book by a woman who had ovarian cancer. It was a bitter, angry book. She ended by saying that her experience with cancer had been wholly negative; that it had only taken away from her, that she had not gained or learned or been strengthened by it in any way. That she was writing this book to dispose of the myths that cancer brings gifts along with its troubles and that suffering ennobles.
I remember that woman now. I know what she is saying. Suffering isn’t noble—it’s awful, often horrifyingly so. Suffering in itself is a terrible thing. But suffering has a context; the experience of suffering is coloured and changed by the meaning we ascribe to it. I don’t want to just ‘suffer’. I want to create something from it, find something in it, learn something from it, do something with it.
It doesn’t make the hard things easier, but for me it’s a way of saving the self from being demolished by suffering. I don’t doubt that I will feel bitter, despairing and angry, but I don’t want that to be all I feel, all I do. I want to come out of this experience with more than that. I don’t know what the ‘more’ will be or how successful I’ll be at achieving it and it’s frightening to contemplate, because really, despite all these brave words, what I really want is not to have the experience at all.
When I was sick last time, the poems were my imperative. They were my way of creating something from the experience. This time, it doesn’t feel as if poetry is what I need to do. But I don’t know what is. It feels odd, not to know. As if I have landed somewhere and forgotten to arrange my lift home.
After a few rather unsettling days of dithering around, I wake suddenly with the thought that I have to write a journal. This idea is so startling that it precipitates me out of bed. I cautiously examine my face in the mirror. Could the thought have somehow lost its way and landed in the wrong person’s head? Journal writing has not been on my list of preferred activities since I was fifteen. At that time, to my horror, my diary was taken from its hiding place under my bed and read out loud for the amusement of others. This induced a very sturdy case of diary phobia that has remained intact until … now?
I get settled with a lap-top and start typing the first entry. It feels strange initially. I am definitely rusty, but it is more than that. The page feels so shockingly open, as if I have suddenly transposed into the Maidenform girl—arriving at a cocktail party, to discover I am wearing only my underwear.
I persevere and discover that it begins to feel good. I determine to write something each day—a travel journal through chemo country. But it is more than that, I realise. It is also my need to find the story of my illness.
Soren Kirkegaard, the Danish philosopher, wrote that, ‘Life can only be understood backwards, but must be lived forwards.’ In the face of a life-threatening illness, it is as if you live both forward and backwards at once. You crane anxiously into the future, trying to see if it is really there. You look behind you, trying to understand, examine the past. It is like standing at the fulcrum of finely balanced weights. Everything comes together at that point. You can see the landscape like a view from a mountain; clearly visible in some directions, obscured in others. And the topographical lines you draw on that landscape are the story lines of your life. You need those lines, because how else will you know where you are?
I’ve been home from hospital for a week and the pain is, at last, starting to get more manageable. I can’t believe the difference it makes! The constant, intense pain of the last ten days has felt as if it will swallow me whole. It takes all my energy to keep on top of it and there’s none left over for just being me.
Tabatha is getting very impatient with me. She has a clear view of household priorities. I am not meeting them. During my days of acute pain, I am curled up in agony on the couch with Tabby barking, groaning, rolling her eyes and pointedly nudging me and her leash alternately. She is clearly exasperated. I had seemed to be so well trained and now look at this.
I have read somewhere about animals who are exquisitely sensitive to their owner’s needs. They lie devotedly by their owner’s side, communicating their empathic sense of shared pain, shored up by the occasional loving lick. Clearly, Tabatha and I have not read the same literature.
She is our second standard poodle—they’re the big ones, about the size of labradors. Our first was also Tabatha, née Tigger. She was originally Lily’s, handed down to my parents. She was big, black and boisterously immersed in that extended puppyhood that poodles are supposed to have. It was love at first lick when we encountered her. As soon as we moved into our house, she moved in with us. Lily had another hit with her next hand-me-down. Snowy, the golden labrador, click-clicked her way around my mother’s house, as her adoring companion, for the rest of her life.
Tabby has decided that if I can’t walk her, at least I can feed her. She is rattling her feeding bowl and moaning pathetically. I know from experience that I have about five minutes’ grace before she gives up and, in a fit of existential angst, demands to be let out into her therapy room.
Tabatha’s therapy room was originally designed to be her outdoor kennel. Martin constructed it lovingly, complete with a little window and wall-to-wall carpeting. As she’s definitely an indoor dog, her kennel was supposed to have the same function as a Brighton Beach bathing box—a place to provide a little shade and relaxation while she’s out enjoying the natural world.
Tabatha had other, more advanced ideas. Entirely off her own bat, and with a perceptiveness that made me proud to say that she is a psychologist’s dog, she decided she needed a therapy room.
I believe the Japanese have done it before her, but Tabby—if we can believe the ethologists—was starting with a handicap of several rungs lower on the phylogenetic scale. We first noticed her mental health arrangements years ago. She’d put in a request to go for her third walk for the day, but it had been refused. Obviously disgruntled, she went outside, straight to her kennel, from which emerged a cacophony of furious scratching, pummelling and snarling. Alarmed by these Desert Storm sound-effects, Martin and I rushed to see what was wrong.
Through the window, we could see a flurry of black fur as Tabatha beat the hell out of something. What was it, we wondered? Mountain lions were di
scarded only because of their relative local scarcity. Surely an ordinary cat wouldn’t arouse such commotion?
As we watched, Tabby sauntered out—relaxed, at ease, with the air of one who has just had a deep, calming massage. There was no-one else in the kennel.
From that point on, every time she felt frustrated by one of life’s little roadblocks, Tabby would take herself straight off to her kennel, beat up the carpet and emerge as her usual, sweet-tempered self; a dog who had not an aggressive bone in her body.
Feeding Tabby reminds me that it is time for my medicinal croissant. All that fasting after the bowel surgery has left me below my normal weight. It’s an unpleasant feeling; a sense of my body being insubstantial and fragile in a way that I don’t like.
On the other hand, for the first time since surgery, I’ve had the focus and concentration to actually read. I’m wallowing in Stella Gibbons’ Cold Comfort Farm. It’s decades since I first read it but it’s just as sharp, and Flora Poste remains my idea of a literary heroine.
I see my new oncologist today. Greg only does surgery, so he’s referred me to a specialist in chemotherapy. Greg thinks I’ll be put on a carboplatin/cytoxin combination; a relatively easy regime to tolerate. Most people don’t even lose their hair on it.
Martin takes some time off work for this first appointment, which is great because firstly, I’m not allowed to drive yet and secondly, on your first visit to an oncologist, you need all the moral support you can get. We arrive armed with a list of questions.
Jim, the oncologist, is a pleasant, straightforward kind of man. He might not call a spade a bloody shovel, but he would definitely call it a spade. I get a shock when he announces that he thinks I need to be on a carbo/Taxol chemotherapy regime, a much tougher one than the carbo/cytoxin. Apart from the fact that it’s harder on the system, the Taxol addition means that I’ll lose, not just the hair on my head, but every hair on my body. Carbo/Taxol, he says, has now become the gold standard for ovarian cancer treatment. In one respect, I’m lucky, because at this point in time, the Australian government hasn’t approved it for initial treatment, only for recurrences.
Having just recovered from the shock of discovering that I’m going to lose my hair, I then proceed to be really stupid and ask him for a prognosis. He says, as usual, that there aren’t many statistics to go on, but that he’d estimate that I have a fifty to eighty percent chance of being alive in five years. All I hear, of course, is the fifty. I give him my rosier version of events, ie. that there was one left-over seed, it’s gone now and I’m going to be okay.
He proceeds to shoot this one down in flames. If there was one seed left over, there were many lurking all over the place. That’s why I need the chemotherapy—to clean them out. He’s not being nasty as he says this, just telling me what he believes.
I go home in shock at suddenly being demoted from someone who had a ninety-five percent chance of cure, to someone who has only a fifty percent chance of being alive in five years’ time. I note, too, that the figures don’t mean that I’d be cured, or even well, in five years’ time if I was in the lucky half. Only that I’d be alive.
I’ve known of course that a recurrence changes the picture, but having someone say it out loud makes it terrifyingly real. I wake the next morning feeling tearful and wondering how much time I’ll have left with Amantha. She and I cry together and the mood slowly lifts.
The next morning, I think things through. Jim was obviously just trying to impart to me what knowledge he has. But the truth is that he simply doesn’t know what’s going to happen. There may be seeds left over, or there may not. He has no way of telling. I may be dead in five years, or I may not. He doesn’t know that either. The future isn’t fixed. For anyone. Even if the odds are a thousand to one, everyone’s entitled to hope that they’ll be the one. And someone has to be.
In the old days, doctors didn’t even mention the word cancer to their patients. The impact of the diagnosis was thought to be so frightening that to deliver it was like delivering a curse; one that could lead to the patient dying even earlier, out of sheer terror and hopelessness. Only close relatives were told the ‘secret’.
Nowadays, the pendulum has swung right around. Doctors deliver the truth with the zeal of reformists. Largely, that’s driven by legal and ethical issues and the change of cultural climate. But as well as that, delivering the ‘hard news’ can free them of it. They don’t have to ‘carry’ it for the patient. The trouble is, it can leave the patient staggering with the impact.
And everyone gets so worried about inspiring ‘false hope’ in patients. This is an interesting concept. If you asked people whether they’d rather live in hope or with a sense of certain doom, you wouldn’t get too many takers for the latter. Hope is what keeps people going. No-one has the right to take that away. It doesn’t mean you have to lie to patients. You can let them know that the situation is very serious, but you can also let them know that nothing is set in stone and no-one can predict the future.
I decide that I’ll talk to Jim at my next appointment. I’ll tell him that I know that most medical ‘facts’ are open to several interpretations. I don’t ever want him to lie to me, but I always want him to give me the most positive interpretation. And no more asking people for prognoses. I’m going to focus on my own version.
The wound from the drainage tube in my abdomen is still seeping blood. Greg wants me to come in tomorrow so that he can check to see that it’s not infected. It’s going to be the first time that I’ve seen him in ‘civvies’ since my sudden redefinition as a patient. I feel nervous and uneasy about it; an irrational fear that he’ll react to me differently now. That my identity will have been taken away and I’ll have been ‘demoted’—back to the anonymous, depersonalised role of patient. It’s re-awoken that intense need I had when I was first diagnosed to be ‘me’.
Having a recurrence feels very different to the initial diagnosis. When it was confirmed that the cancer had come back, I was horrified to find myself feeling fleetingly ashamed; as if I had failed. The feeling didn’t last long, but it rocked me. Here I was, a sane, rational professional in the field, caught up in this irrational feeling of stigma. Oscar Wilde’s lines echo in my mind: ‘To lose one parent, Mr Worthing, may be regarded as a misfortune; to lose both looks like carelessness.’
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
When it’s over, the body
can’t bear to remember
how it was that time—
taken by something larger than passion
and surprised, a kind of horror
at the way you ceased to exist.
You didn’t ask to be loved like this.
Didn’t imagine even, it could really happen.
Now you see
that this is the hesitant follower
in shadow—the face you saw,
dismissed in a thousand streets.
It is the wallflower,
which has been sending you shy
messages all its life—small tokens,
a veiled note, a found rose.
In its imagination,
you are already making
the small, low sounds of love
as it rushes forward,
will not let you go.
CHEMOTHERAPY 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.
