by Doris Brett
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.
‘Yes,’ she says rather weakly. I can hear her thinking that at least if there’s any trouble, she’ll be the one with the sharp instrument in her hand.
After the blood draws, I ring Jim’s secretary, to see if my blood counts are okay. They’re not. She tells me that they’re very low and she doesn’t think I’ll be able to do chemo on Friday. She adds that Jim hasn’t seen them yet, but she’ll ring me when he does.
I am stricken. Not have my chemo this week? That means I won’t be able to finish on my birthday. I feel like a child denied a long-awaited treat. (But Mummy, you promised me my chemo … wah!)
Waiting to hear from Jim, I am as nervous as an athlete waiting for the umpire’s decision. I have been in a competition, with each blood test doubling up as the scoring board for ‘me’ versus ‘the treatment’. So far, it’s been me: 3, treatment: 0. While not exactly thumbing my nose at it, I’ve been getting cocky. Now it’s bouncing about on the other side of the ring, shadow-boxing the air and saying, ‘Hey baby, now we’re getting down to it.’
Jim rings after a couple of hours. Yes, my blood counts are very low, but he’s decided to give me the chance to get them up. I can have another blood test on Friday morning and if my counts are high enough, I can have my chemotherapy that afternoon. And to top this all off, I don’t need to take my dexamethasone in advance; he’ll give me extra in the drip if I do have chemo.
Buoyed by the chance to score again, it takes a moment for me to realise that I only have a day and a half to get my white count zooming into ‘sock it to me’ zone. How I get this to happen, of course, is another question. I sit down and think about the hypnotic tape I made for myself at the beginning of chemo. Back then, I included a suggestion for keeping my white counts high, but I see now that the image I used wasn’t the best. I had focused on the count—that is, the number—as being like a cork floating in water. It was pushed down, but would immediately bob up again. It occurs to me now, that it would make more sense to focus on the bone marrow, where the white cells are actually manufactured; to imagine it revving up, producing more and more of the white cells I need.
I remake my tape using this new image. I imagine a factory full of enthusiastic workers. It is lit up and bright, bouncy music is pouring from it. The production line rolls at full speed, day and night, tended with increasing zeal by its energised workers. They are producing neutrophils, a particular kind of white cell, that Jim uses as his measuring stick for chemo-readiness. I play my tape twice a day and call up the factory image each time. I have no idea if it’s going to work.
I did it! My neutrophil count went from 0.6 to 1.4. I get home from chemo and hospital this morning feeling groggy and very, very tired—but victorious. The fatigue is much more marked than before and when I read, the letters on the page go blurry. But hey, it’s four down now and only two to go! While I was in hospital, I was told that my platelets were also very low and that I might need a transfusion. I decide instead to add them to the production line of my bustling hypnotic factory.
A few months into the future, after I’ve finished all of my chemos, I will pick up the results of all my blood tests over the chemotherapy period and spread them out before me. I am graphing the changes in levels of neutrophils and platelets. And it is fascinating. Before I changed my tape, the neutrophils and platelets were cycling in tandem, rising and dipping together on pretty much parallel lines. After I changed the image on my tape, focusing on the neutrophils, my neutrophils started to rise. The platelets continued to go down. Two days later when I began to focus on the platelets as well—bingo, they began to rise. And even through the succeeding fifth and sixth chemos, they both remained higher than the level they’d reached for the fourth chemo. It’s not a controlled double-blind experiment with hundreds of subjects, but as a single case study, it looks pretty good to me.
It’s a couple of days since coming home from chemo, and I’m still very tired, but the blurry vision has gone. My concentration span is now a wraithlike echo of what it used to be. It’s hard to settle down to reading a novel, for instance. As usual, I’m amazed by how little I remember of the chemo experience. The strongest image that I’m left with is of Neil, an oncologist who was standing in for Jim, examining my hand and wrist, looking for veins. He turns my hand over delicately, touching the veins with his fingertips tracing the thin blue lines. He looks as if he is examining an ancient map or reading tea-leaves. Then he just slips in the needle.
I’m definitely feeling much more debilitated this time. In tandem, I’m also feeling bored and cranky, like a sick child who doesn’t have the resources to entertain herself. I wake in the morning, thinking of lots of things I want to put in my journal but by the time I’m up, the flow of thoughts has deserted me. I feel like a blob.
My eyebrows have almost disappeared and I have about three eyelashes left. Sometimes when I look in the mirror, my face looks so pale and featureless that I think ‘where have I gone?’ It’s like becoming a watercolour instead of an oil painting. I never realised how much expression eyebrows and eyelashes give a face until I saw their absence. It’s stranger than losing my hair. Then, my face was still my face; maybe even more so. Now, it feels as if my face is disappearing.
My lashes and brows really started diminishing a few weeks ago. Around that time I went to the chirpily titled ‘Look Good, Feel Good’ seminar at the hospital. The seminars are run to help women make the most of their hair-by-chemo, complexion-by-drugs new looks. Cosmetic companies donate samples and there’s a whole pile of wigs to try on.
It was fun opening our goody-boxes to see what cosmetics we’d been given; like being at a children’s party. We each had a sprinkling of different brands. I copped an el cheapo one and was deeply envious of the woman sitting next to me—she’d lucked out with Christian Dior. No-one else was on my particular chemo regime and so I was the only one who was going to lose eyelashes and eyebrows as well as hair. I learned how to pencil in eyebrows, but about the eyelashes, alas …
Eyebrow loss, however, has a curious side-effect. Making my face up each morning proves to be unexpectedly entertaining. As I draw in my eyebrows, I discover I can pic
k my expression for the day—surprised, thoughtful, grim—whatever my fancy desires. The eyebrows say it all.
Today, in a shop, I have to produce my old driver’s licence; the new one hasn’t come through yet. I pull it out and am suffused with the oddest feeling. The woman pictured, with all that hair, looks familiar. Who is she? It takes a second for my brain to click in and tell me that it’s me. I feel as if there are two of me; as if our paths diverged mysteriously the way parallel universes are supposed to split off, and that one of me, the one with the hair, is going about her usual business in her usual world. The other me, the one without the hair, has been transported into another world, quite separate from the normal, outside world and has remained there for the last five months. People visit, but it’s like visiting a prison or a boarding school. They simply alight briefly on the outside, like butterflies, and can have no comprehension of the other reality within.
Fifth chemo time and my blood count is high enough for me to go ahead with it! White cell counts usually get lower, and stay suppressed longer, with each succeeding chemo. But my neutrophils are double what they were at this time last chemo and my platelets have jumped up and are much higher too! I am impressed. I think my body heard when I was talking to it. What a strange thought that is.
This chemo is an eye-opener. This time, at the beginning, one of the nurses notices that I am distinctly uncomfortable. She notices this because I am writhing around like a snake on amphetamines, convinced that if I can just stretch my legs enough, or get them into the right position, the ache will go away. She decides to dilute the chemo more than usual and runs it through more slowly. Magic! No more burning or achy, restless legs. If only I’d known the first time.