Eating the Underworld

by Doris Brett

  I get up, still shaking off the effects of the dream. Amantha calls out that Greg rang for me yesterday while I was out. He wants me to ring back. It must be about the book, I think to myself. And then one minute later, it hits. Numbers! The nightmare about not getting the right number. It must be the blood test. Something is wrong with my Ca125.

  Shakily, I dial Greg’s number. He’s with a patient and will ring me back. An hour later, the phone rings. ‘It’s your Ca125,’ Greg begins. ‘I’m sure it’s just a lab glitch, but it’s risen above normal.’

  The ‘normal’ range is below 35, although some researchers say that for women who have already had ovarian cancer, the cut-off point should be even lower. My Ca125 has been stable at 15. I suddenly remember my dream-search for the number 15 tram. And how I found it, only to discover that it was actually the number 42 tram. ‘What has it risen to?’ I ask.

  ‘41,’ Greg says.

  I take a breath and calm myself. Laboratories make mistakes all the time. The Ca125 marker can rise for reasons other than returning cancer—an infection, an inflammation. It will be something benign. This is just a blip. It means nothing.

  ‘What I think we should do,’ says Greg, ‘is retest you in a month’s time. We’ll probably find it’s just gone back to normal.’

  He sounds calm. Later he will tell me that his heart dropped like a stone when he opened that envelope and saw my elevated Ca125.

  I ring a medical friend. I want to know more about the Ca125. I want to know all of the innocuous reasons it could rise, so I can recite them to myself. Calm myself. The friend says, ‘I think it’s very likely that this means you’re having a recurrence.’ So much for plan A.

  Plan B involves worrying. It is a hard weekend. Martin is away at work, as is Amantha. Fear really does feel like chills. My mind is racing. I know that once ovarian cancer recurs, it’s almost always deemed incurable.

  It’s hard to concentrate on anything else. I alternate the scary thoughts with upbeat ones: it’ll work out okay, it’ll just be a blip. But it feels as if the black-gloved, horror-movie hand that slides around door handles in the dark, has found its way into my heart and is squeezing tight.

  I ring up some friends. I want company. Someone to chat to. A hug. They’re not home. A couple of friends know what has happened, but haven’t rung to offer support. I’m not good at asking for help, but I figure this is Nature’s way of making me learn. I ring one of them.

  And this is where fantasy and reality collide. In the fantasy version, I do it—I ask for help and immediately, my karmic lesson having been learned, I’m enfolded in the open arms of friends. They come immediately, with the friendship version of chicken soup, saying, ‘Why didn’t you ask us before? Of course we’re here for you.’ Fadeout.

  The real version takes over. What actually happens is …

  I ring a close friend whom I’ve supported through many difficult times of her own. She was with me on the morning I got the news of my Ca125 rise, knows what it means and how terrifying it is. That was four days ago. She hasn’t rung since. I think of the hours I spent on the phone with her each day when she was going through her crises and I feel hurt that she hasn’t called. I take a deep breath and tell her that I’m frightened, that the last few days have been nerve-racking. That I’m aware of her silence and disappointed that she hasn’t been in contact. And then she attacks me. Launches into furious speech; tells me I am selfish, demanding and self-centred for wanting support at this time.

  I am beyond shock. I hang up, not quite able to believe that this has happened. A couple of days later, she realises what she has said and sends apologies. I am too hurt and angry to respond. It is weeks before I feel able to resume our friendship.

  It’s a lesson on the intense and confusing reactions a cancer diagnosis draws from people. Another good friend will respond in the same way with anger, minus the apologies. One more will simply stop speaking to me. I have other close friends, but out of all of them, these three are the ones to whom I have given the most concerted and sustained support during their many troubled times. I am shaken to discover that now, when I need help from them, they are turning their backs and, indeed, attacking me for asking.

  It is hard to describe the impact of this experience. It is worse, in many ways, than the shock of diagnosis. I experienced that as simply a random throw of the dice. It affected me intimately, but I never felt that it was aimed at me. Being diagnosed with cancer was not something that I was singled out for, that I deserved or didn’t deserve. It happens to millions of people and I happened to be one of them. Cancer has no face. It’s like the weather—impersonal.

  With friends, however, the experience is deeply personal. These are people I trusted and cared about. Their reaction now feels literally unreal. A part of me keeps expecting the film to rewind and the projectionist to say, ‘Oops, sorry, wrong film.’ I struggle to make sense of what has happened. I am aware too that whatever the mechanism, obviously I have had a role in it. I am a part of this. I need to find out what it is, understand what I have done, what they have done. But right now, I am too wounded, too angry, too raw.

  I know intellectually, of course, that this mix of friends’ reactions is pretty much the norm. My patients invariably have at least one friend who dropped them like the proverbial hot cake on discovering they had cancer. The fear that cancer inspires cannot be underestimated. Many people simply cannot bear to think about it, let alone come into regular contact with it and the reminder of their own mortality. Others react in infantile ways, angry that you will no longer be able to be ‘mummy’ and support them in the ways to which they have become accustomed. Others still are so overcome by the anticipated pain of losing you, that they can’t bear to have contact with you. Still others don’t know what to say to you and so they say nothing and keep away. None of this, of course, makes it any easier on you. It still feels like abandonment.

  A few years later, I will discover an internet site containing an article by psychiatrist, Karen Ritche. It is titled ‘Angels and Bolters: A Field Guide to the Wildlife of Cancer’. ‘You will find out who your friends are, as the saying goes,’ she says. ‘As if that’s a good thing,’ she continues. ‘As if anyone ever really wants to find out who can be counted on and who can’t.’ I am up out of my seat, cheering by this stage, as she goes on to detail, among the ‘wildlife’, the Preachers, the Clueless, the Angels and, close to my heart, the Bolters.

  Bolters … disappear when you are diagnosed with cancer. The Bolter is someone who was always around before you had cancer, but now does not call and does not show up. Bolters may or may not send a card before they leave. When questioned, Bolters make excuses: they knew you were tired, or they knew you would ask if you needed anything, thus blaming their absence on you. Like the Clueless, their distance reflects their own discomfort. They stay away because they are afraid of their own sadness or mortality.

  There’s a comfort in knowing I’m not alone in this. Because one part of me whispers sometimes, in a small, hateful hiss, that it is shameful to have friends turn away from you. That it reflects your worth. That you are the pariah in the corner, humiliated and rejected. That something is wrong with you.

  At a time when we are so vulnerable and fragile, how easy it is to enter into this deadly pact with what is most destructive within us. I shake off the Welcome to Christmas at the Leper Colony feeling, but it is a sobering way to begin a terrifying journey.

  It is not till long after that I am able to think about the choices I made in ringing those particular friends. I have recognised by then that there were other friends whom I didn’t ring, who would indeed have come over and given me the support I needed. The friends I turned to for help were the ones I had given the most help to in the past.

  It highlights again the shadow of the younger self I thought I’d left behind me; the one who felt she had to be extra good, nurturing and responsible; the one who was there to take care of people, not ask to be taken care of.
I recognise the amazed gratitude I still feel if someone, unasked, goes out of their way to do something for me. The astonishment, because I haven’t ‘earned’ it. And I can see that in turning to those friends to whom I had given a great deal, rather than those with whom I’d had a more equal relationship, I was again bowing to that inner fear. The accusing voice that says, who am I to impose, to dare ask from others, something purely and selfishly for myself? I realise with fascination too, how, with those particular friends, I managed to evoke a response that mirrored exactly that same inner, recriminating voice.

  Having failed the test (‘Asking for help’: discuss and dissect, with special respect to the underpinnings of friendships), I discover I am about to get a supplementary—the summer crash course is coming my way. The next few months will act as a kind of magnified Petri dish for friendship. There are those who will drop out of my life altogether and others who will rise to the occasion. Some friends, whom I haven’t seen much over the years, will go out of their way to keep in contact; while others, of whom I’ve seen a lot, will retreat to a single token phone call or less. Clarifying is the word I keep thinking of.

  But this is not the clarifying of a mist gently evaporating to reveal answers. This is the clarifying of paint-stripper. A solvent that stings and burns with its harshness, but reveals what was truly there all the time.

  With that first weekend behind me, I feel stronger. The world regains some normality. I become more optimistic. It’s definitely a lab glitch, I tell myself. I remember that I had a bit of a bug when I left for Perth. A scratchy throat, a feeling of slight malaise. Of course! If it’s not a lab glitch, then it could have been the infection sending up the Ca125. Undoubtedly, the next test will find it safely back down to normal levels.

  Greg decides that the next test will be in two weeks. I get through them by taking myself in hand, Mary Poppins-style (‘Now children, come along!’). I think about how relieved and even silly I’ll feel when the new results come back as normal again. I remind myself of the statistics I’ve been given—only five percent of women with stage 1a die, ninety-five percent live. With odds like that, it couldn’t possibly be a recurrence. It doesn’t make sense that I could have been saved—one of the lucky few to have been diagnosed early—only to trip into that terrible five percent hole. Luckily, no-one is there in those first weeks to lazily blow smoke rings upwards, roll their ennui-lidded eyes and say in Garbo-ish accented words, ‘And you theenk ze universe makes sense, darlink?’

  I’m feeling fairly calm as I go into the Pathology Centre to have my blood taken. As I hand in the written request for the test, I notice that the official paper for this pathology centre is white with fine blue lines—like the blouses in my dream.

  The Ca125 test takes longer to evaluate than the average test. It’s a wait of one week until the results come through. I manage patience for five days, but on the sixth day, with the results so nearly at hand, the waiting becomes intolerable. I’m jumpy and tense. I dream that I am trying to add up numbers, but that they keep coming out too high. The last hour, waiting for the results to come in, lasts for agonising centuries. Finally, the phone rings. My Ca125 has climbed a few points higher.

  A few days of intense fear and anxiety and then I am back to reassuring myself. Okay, so it’s not a lab glitch, it could still be an infection. Or it could have no explanation at all. Just a response to some mysterious internal climate that means nothing at all. Or at least not cancer. Ninety-five percent, I keep telling myself. The odds are with me.

  I have also discovered a corollary to Einstein’s relativity theory. Time expands in inverse relationship to the proximity of test results. And in particular, it expands exponentially in the last few hours before delivery of results. It occurs to me that with all this slowing down of time, theoretically, if you could manage to ensure a constant stream of impending and critically important results, you might just keep yourself young forever.

  A month goes by. Time for the next Ca125 test. The rationale for the wait is that if it’s cancer—with the rate that those little guys go forth and multiply—a month should give them time to double.

  This time, the wait for results is excruciating. Mary Poppins is by now only a distant, umbrella-shaped speck in the sky. I manage the first few days after the blood test, but by the end of the week, when I know the results will be in any day, I am a frayed, high-voltage wire.

  I feel fragile, on the easy edge of tears. I wake at 4.00 on those mornings, poised over a precipice. The house is silent with sleep and it feels as if I am entirely alone, filled through every pore with deep, invasive terror. It is at these times that the sense of what may lie ahead of me takes on its most concrete shape. It is when my mind begins to reach out and touch the fact that it really may be death waiting for me with the next batch of Ca125 numbers.

  This wait is so much harder than that of two years ago. Then it was concentrated into ten days and I had the optimism of the unscarred, first-time fighter. Now, the wait stretches and stretches. Nothing definitive, nothing relieving. And I know too much by now about ovarian cancer and the deadly meaning of a recurrence.

  Finally, the hour has arrived. I phone for the results. Engaged. I phone again. Not ready yet. And again. Give us an hour. I am dementing rapidly. And then at last, they’re in. But they’re not what I want to hear. The numbers have gone up again. My Ca125 is now 55.

  At least it hasn’t doubled, I say to myself, hopefully. That’s good. If it had doubled, we could have been practically certain that it was cancer. It’s only gone up a bit. What does it mean? Greg doesn’t know either. He agrees that it would have been much worse if it had doubled. But at the same time, it hasn’t gone down. Or even stayed steady. So we still don’t know. He suggests another test in a month. See what happens then.

  I catch my breath and return to some semblance of normality. Only, it isn’t really normality. I’m going through the motions—doing pretty much the usual things, but it is like skating on the most delicate of thin ice; caught between the safety of the shore, which beckons in the distance, and the terrible, freezing depths. Which is it going to be? I am astounded by the trivial talk I hear people engaging in—at tram stops, in shops, in queues. How can they possibly be interested in these insignificant things? It seems unimaginable that I too was one of them just months ago.

  Apart from Martin and Amantha, no-one wants to talk about what is happening. No-one wants to admit the possibility that I might be facing a recurrence. My friends wave it away—it’s not going to happen, end of conversation. I can feel their reluctance, as solid as a push. I know it’s too frightening for them to think about, but I’m frustrated. I don’t want to talk about it endlessly, but I do want to be able to say, ‘I’m scared of what might be ahead,’ and have someone take the prospect seriously, sit down and recognise with me that sometimes the nightmare really can happen.

  The Christmas holidays fall between now and the next test. I’m determined to enjoy them. We’re going away, as we always do, with a group of old friends. We all meet up on that first day in Merimbula and the women head out to walk to the township. It’s been a month or two since most of us have seen one another and we bring each other up to speed on our lives. When it comes to my turn, there’s an awkward silence as I tell them about the Ca125 results.

  It’s not the silence of people who don’t care, but rather that of people who don’t know what to say. The talk turns to something else and we walk on. Apart from a particular friend who takes me aside to ask how I’m doing, it’s not mentioned again for the rest of the holiday. Once more, it’s a telling lesson on how hard it is for even those who genuinely care, to respond to such frightening issues.

  It’s a sunny day and it feels so good to stretch out and walk. I realise how constricted I’ve felt in the last few weeks. I haven’t walked regularly, as I usually do, and I’ve stopped going to my dance classes. This ten days in Merimbula is like time out. There is, however, an unreality that permeates it. Even tho
ugh it is not spoken of, the knowledge of what lies in store is always there with me. It provides an odd split. There is the me who is able to have fun, hike, laugh at jokes and be my ‘normal’ self. And then there is the other me, stiff with terror about the threat to come. This other me is not addressed. She is a silent and lonely watcher on the holiday scene. I mostly meet her at night, lying awake in the dark.

  When I get back from Merimbula, I’ll have to go for the last blood test. If my Ca125 is still climbing, Greg thinks we can’t leave it any longer. He’ll do a laparoscopy, which consists of inserting a fine scope into my abdomen, so that he can see what’s going on.

  I am remembering my dreams most nights. One in particular stands out. I am floating in the sea near Perth. I am supposed to sit for an exam, but it has been deferred for a bit. As I float, I meet a large spider-crab, native to Perth. We chat to each other. It tells me, in a rather aggrieved tone, that its reputation for aggressiveness is undeserved and that it isn’t really such a bad sort. I commiserate with it and we chat on.

  It is not until some weeks afterwards that I realise, with a rather eerie feeling, that it was my tumour that I was talking to in my dream. In the Zodiac, Cancer is the crab and my tumour has been classified as very aggressive. Perth, the symbol of death and rebirth, seems the perfect place for the crab to reside. Years later, the memory of floating lazily in the blue waters off Perth chatting to the indignant spider-crab, is still perfectly clear. It has both the oddness and the absolute rightness of Alice’s adventures in the looking glass.

  I return from Merimbula to the next blood test. The definitive one. The night before the results are due, I have a vivid dream: I am on a bike in a marathon-like event. It is frightening, but exhilarating, swooping down and around the sharp curves of the path. The last stretch of track is angled so steeply upwards that I have to dismount and walk the bike to the top. There is a woman up there who has dropped out of the main group because she couldn’t make it. She has skinned knees and is in pain. I decide to distract her, to take her mind off the pain. At the same time, I suddenly become worried that I have lost my way and strayed off course. Someone gives me a map and I see that the course takes in a stretch of water. Everyone except me has crossed over in a ship, but I have had to take the underground path—longer and harder, but the right path for me. I am on track, I think to myself. I am on the right track.