you are not the same
Dorothy Porter, ‘Not the Same’
Through the pain of the breast cancer diagnosis and treatment I sank so low. When I went down into the pit of my stomach with my elevator emotions, got out and had a look around, I saw myself as someone who was never going to become an old woman, or achieve things like becoming a writer, or support my family financially in a job which satisfied my desire to care for others in a professional role. The word ‘loser’ kept springing to mind. After the blackness of this despair, the opposite, light, seared through into my daily existence. I was happy: plain and simple. And alive.
I was alive.
Every Monday in Celso’s first few years of life we attended a feeding group, and in the afternoon he and I drove to another place north of the city for speech therapy. Every Tuesday I took him to a ‘neurotypical’ playgroup for newborns to five-year-olds in a cavernous room in a Baptist church. Every Wednesday he attended an Early Childhood Development Program playgroup for high-needs kids. The children in this group had Down syndrome or other chromosomal disorders; some were autistic and a few had unspecified problems and an overarching diagnosis of Global Developmental Delay (like Celso at the time).
I enjoyed both playgroups, where I spoke with other mothers. I loved it when Celso sparked another child’s interest and they played ‘hello’ or a toddler rolled a ball to him as a means of introducing themselves. In the preschool primordial world of playgroups, morality wasn’t known yet and no societal rules were followed; a grumpy boy poured sand over Celso’s head and into his eyes because he’d taken hold of the boy’s tractor; or a boy with flyaway blond hair and a brain that short-circuited and stopped him from walking properly kissed Celso’s hand.
The reverb after being told your child’s disabled is numbing. I took a step back with the force of it. Then leant into it. I hoped Celso wasn’t so developmentally delayed that he couldn’t function in the standard schooling system or socially. My pregnancy fantasies of having a brilliant boy, like his erudite father, were gone. I’d imagined us both teaching him the wonders of life. The genie in the bottle was expectation. I let it out and let it go. There was a risk that Celso’s medical issues isolated me from other mothers’ experiences of mothering. In high-needs groups I found an understanding of the depth of tiredness and the circuitous, rolling worry associated with caring for these special children. It was the same situation I’d had with my cancer: snap. I went to support groups for young women with breast cancer, and support groups for young women with breast cancer and young children.
Come bath time for Celso I’d perch an Astro Boy rubber stamp on the bath’s rim: One, two, three. I flicked it into the water. Celso would lean over and shudder with giggles. Red-faced, he grinned with all of his teeth filling up his face. Then he’d pause and pass the rubber stamp up for me to do it again. Flick. Cackle.
Stripped down to its core, my primary focus was still about mothering a child. In this I could connect with other people and their parenting experience. This was important. Writing and mothering went deep for me. The world sat well when I did both: the sun shone, petty things were left, unkind words forgiven. My diagnosis of breast cancer only re-confirmed my need to have both at the centre of my life. This, and my relationship with my partner. All three were essential to my happiness.
Where else to go once you’ve seen the bottom?
I could comprehend how it was possible to keep sinking: to suicide. I’d never had a true suicidal thought or more importantly a plan before cancer; I wanted life in full Technicolor, please. I had Dorothy Porter’s puckered scar across my chest to indicate where I stood in the black well; my heart had a new kick to it; I was not the same. Oh, but for the gods, I was happy again. The minutiae of daily life, mostly domestic, didn’t overwhelm me; there was a heightened quality that surrounded my interactions with friends and family. I boarded that plane to see old family friends instead of putting it off, and sent that letter I’d meant to write. The most surprising of all was my complete forgiveness of my father. My relationship with him to date had been my Achilles heel. As a child I suffered a deep sense of abandonment and sense of failure that I wasn’t loved by Daddy. Or was this another inheritance? The grief from my mother’s primal wound as an adoptee making its way into the next generation’s psyche?
My primary school teacher encouraged my poetry, as I’ve mentioned, and asked one day for me to read out another piece. I did, then promptly burst into tears. I wrote about how, when I was an infant, my family lived in Firle (a tiny village in south England) and that I used to go into the vegetable patch and pull out Mum’s carrots, plunk, plunk, and that maybe I had also pulled out my father’s heart. Marisa, the ‘it’ girl, a head taller and blonder than any other girls (a future Guess model), put her arm around me. She was kind, sweet and good company. The scene with Marisa was melodramatic but it reflected how my little nine-year-old self felt.
I guarded my heart and words with my father as a young woman, determined to never let him get to me again. But I failed. In the week I was very ill and hospitalised, my father waited on me hand and foot: cooking all my meals, doing all the laundry and letting me rest. The complex weave of my self-protective armour and the pain underneath dissolved. It wasn’t conscious, or worked through. It just went.
In Invisible Cities Marco Polo described the cities he had seen and imagined to the Chinese ruler Kublai Khan:
In Ersilia, to establish the relationships that sustain the city’s life, the inhabitants stretch strings from the corners of the houses, white or black or grey or black-and-white according to whether they mark a relationship of blood, of trade, authority, agency. When the strings become so numerous that you can no longer pass among them, the inhabitants leave: the houses are dismantled; only the strings and their supports remain …
They rebuild Ersilia elsewhere. They weave a similar pattern of strings which they would like to be more complex and at the same time more regular than the other. Then they abandon it and take themselves and their houses still farther away.
Thus, when travelling in the territory of Ersilia, you come upon the ruins of the abandoned cities without the walls which do not last, without the bones of the dead which the wind rolls away: spider-webs of intricate relationships seeking a form.
I recalled this image when I tried to conjure the words to describe what kept me standing and hoping. In the moments when I basked in the simple happiness of caring for my family and remaining healthy, the external ambitions of becoming a writer or a professional in another arena dissolved, and I just wanted to live with my friends and family around me: geographically and emotionally. What I did for a crust and the house that I lived in were not important. The strings that grounded and connected me to others were. The dress made by a relative who gave it to me and then took the time to share a cup of tea: a pink string of familial love. My son holding on like a koala and squealing with joy after I’d picked him up: a red string of blood love. My partner making me laugh: a blue string of contentment and attraction. The thought that I could call people who understood me: yellow strings of joyfulness. The knowledge that I could get on a plane and someone on the other side of the planet would welcome me into their home with real love and affection: an orange string of kindness and shared moments.
When my world fell apart on diagnosis, the criss-cross of multi-coloured connections and friendships became the flexible scaffolding that held me upright.
Every female organ apart from my brain: what makes a woman?
Choosing a doctor is difficult because it is our first explicit confrontation of our illness. ‘How good is this man?’ is simply the reverse of ‘How bad am I?’ To be sick brings out all our prejudices and primitive feelings. Like fear or love, it makes us a little crazy. Yet the craziness of the patient is part of his condition.
Anatole Broyard, ‘The Patient Examines the Doctor’
Your son ha
s a cold? asked a nurse.
Yes.
We’ll have to put you in a room as people are neutropenic here.
Damn, gynaecology–oncology! Because I was having optional surgery I didn’t think of the cancer side of things. A woman with no effective white blood cells could catch Celso’s cold and miss out on timely surgery. I tucked his echidna puppet into his arms and hurried us past the women’s magazines and health pamphlets to an open door that the head nurse gestured towards.
We bundled into a plain box that was the consulting room, and I sat down in entertain Celso mode. I blew up a surgical glove and let it fly around the room.
Sorry, do you mind if I change my son’s nappy? He’s pretty whiffy, I said to the tall man who’d appeared in front of me.
The gyn-oncology fellow cheerily replied, Of course, change his nappy. He’d just introduced himself.
I grabbed Celso’s backpack and put my giggling son down on the gynaecological examination table in the adjoining room. I giggled back because the leg paddles were against my knees when normally I’d be knees up. Celso found the strange moving table and lights fascinating.
After I treble-bagged the poo we were back discussing my impending hysterectomy.
Your ovaries, fallopian tubes, uterus then cervix are taken out through your vagina.
Hmm … lovely. From what I’ve heard you have to blow my belly up. What’s the pain through the shoulders like?
It depends on how much is used and individual reaction to pain. You’ll be in hospital, so the pain will be managed.
Good. That was all I needed to know.
I found out later that the young surgeon with his Germanic clear skin, blue eyes and pretty appearance was a father of a one-year-old. Did he think of his partner’s future fertility when he saw others’ child-bearing years taken away, by him?
His ease with my hectic toing and froing and Celso’s rambunctious destruction of the medical room wasn’t so surprising in lieu of his parental knowledge.
Your last pap smear was a year and a half ago. We’ll need to have another check before surgery.
Okay. But my crotch is hairy like a bear fresh out of hibernation, I thought.
Its aesthetic lines weren’t on show under the fluorescent lights – it was just about whether there were any pre-malignant cells cooking there too and whether all my female organs could pass through my vagina.
Midway through the surgeon’s scraping the sides of my vaginal wall, Celso came in grinning with a What’s going on? look.
Oops, your son’s come in, said the nurse standing to my right. A nurse was always present when male doctors did gynaecological examinations.
It doesn’t matter, I replied. It’s my vagina. You didn’t come out of it but you grew up near it, I said to Celso.
The surgeon grinned. That’s right, he said, half turning to face Celso.
Celso took a cursory look over the surgeon’s shoulder. Not interested. Instead he spun the wheels on the examination table near the nurse’s faux-leather pumps.
I left after three-and-a-half hours of consultations and waiting, having had:
A blood test.
A consultation and pap smear with the gyn-oncology surgeon.
Discussions in detail with a nurse who had measured my depression/anxiety levels (okay).
Discussions with my anaesthetist about my aversion to general anaesthetic. She would get my records.
A chat with a case manager: You can have a light breakfast of toast and tea then no food after 7 a.m.
And lastly a conversation with a physiotherapist, who told me what to pull and what not to. However, her first words to me on walking into the room were, Is your child disabled?
No, he’s likely autistic. I smiled. Fuck you very much, I thought.
Afterwards in the harsh light of the room I softened my response to her, realising she’d come in armed with the information that Celso had a cold and was fed via a MIC-KEY button inserted into his stomach. His tube was stuck out of his feeding backpack. Autistics often have ‘funny’ guts and fussy food habits. It’s not unheard of for some to require nasogastric tubes to put weight on their bones if food refusal goes on for too long. However, Celso was different from this. His was apparently a mechanical or neurological fault in his body’s make-up, rather than simply a factor of autism.
I walked home wheeling Celso in the pram, well armed with what was about to happen. The public system was good. This was the first time I would have surgery for breast cancer treatment as a private patient in a public hospital.
Line up your probe at a 45-degree angle to the incision site. See? Your view is clearer.
Oh, yeah. I heard in reply through the swinging grey surgical doors, the vintage of M*A*S*H.
Of course this wasn’t what the gyn-oncology consulting surgeon said but this was what my mind translated from his discombobulating words. He was the senior surgeon; the German gyn-oncology fellow who’d conducted my pap smear worked with him.
Hi, I’ll be in in just a minute, my anaesthetist said from around the M*A*S*H doors. She had the sharp-eyed stare of a bird of prey. Tall and bone thin. Her intelligence radiated through her face. I liked her.
I found out later she was a mother of twins and an 18-month-old, with a nanny at home to assist.
So you’re pretty fit? asked the anaesthetist’s understudy. He went on, I’m studying so much I don’t want to think of how unfit I am.
Buddy, I don’t care if you’re just a Hawking brain wheeled in here to bark orders – you being smart is good. You’re brain fit then! I said.
Yes. There is that.
We started waxing lyrical about drugs. Zofran was amazing. It ceased my nausea straight away, I said.
I know, from just a wafer on the tongue. It’s an excellent anti-emetic. So, what we’re going to do is this … The young anaesthetist in training proceeded to explain all the drug combinations he was about to give me, which approximated five types, to stabilise me and hopefully let me wake up nausea free.
The gyn-oncology consultant bounced into the fishbowl-sized cubicle. I just want to read my notes first.
He’d accepted me on his public list after seeing me in his private suites. A kindness he could’ve rejected, considering I’d baulked at his surgical charges to go private.
Here he is! I said as his German colleague arrived through the swing doors. It was standing room only. From my lying-down position on the trolley his head seemed to scrape the grey ceiling.
Both men flicked pages back and forth until the consultant’s notes were found.
Ah yes, I remember you now. The writer! (If only.) I finished my novel. I’ve given it to some other doctors here to read. It’s 50,000 words and fairly fast paced.
Well, I handed in the first half of my MA manuscript yesterday, I said.
That must’ve been a good feeling.
It was! I said, thinking, Bastard. What I actually thought was: Bloody hell. You, doctor, have finished an adult thriller that’s on wads of paper being read by other high achievers in this hospital monolith, while – you know – consulting in public hospitals on how to save lives and running your own private surgical practice. Such a ‘let’s do lunch’ kind of guy. I mean really.
In truth it wasn’t until this final moment with my womb and ovaries intact inside me that I actually understood what I’d agreed to, with my heart and not my head. On the trolley so close to the scalpels and metal dishes I placed my hands over my lower abdomen by way of a silent goodbye.
She has tachycardia, said someone in white.
There’s a baby! My heartbeat was running too fast.
Wow! You really don’t know where you are, replied my bird-of-prey anaesthetist.
No, I know I’ve woken from surgery but I heard a baby.
Oh yes, that’s from a C-section.
&
nbsp; Oh!
Why do they put the happy, happy post-C-section new parents with women out of gyn-oncology surgery? I’d just had my womb removed at 37 and the woman next to me just had issue from hers. What if I was childless and woke up to this?
In recovery I attached myself to a rapid-fire conversation with an African nurse, and told her how brilliant the consulting surgeon was. I held her gloved hand tight. My eyelids were heavy. I could barely see her. At intervals I peered over at the woman opposite me, who remained unconscious. Her blood pressure was dropping: 60/40. A flurry of blue-backed and white-backed nurses did something, and the unconscious woman regained consciousness briefly then was out again. Her cheekbones were angular but well padded. A relieving nurse sat slumped next to her, keeping an eye on her blood pressure. The woman looked seriously unwell. I wanted her to open her eyes.
A strutting father walked past the end of my gurney. He was followed by a new C-section mum holding their tiny baby against her chest. She appeared oblivious to the porters pushing her bed. The baby’s head of hair was a swirl of red and black.
The father had walked in and out of recovery to tell relatives about the baby. His repeated knocking to be allowed back in had annoyed the staff. He had a mouth full of methadone teeth: half-rotted stumps wrought by a major addiction and its recovery. What looked like scars on his neck were scrawled tattoos. His fingers were ringed with cheap silver. He was happy. His healthy child was born. A pure moment for him and his girlfriend.
New life and the end of my capacity to nurture it.
Now: what’s current in the breast cancer arena?
Quicksand years that whirl me I know not whither,
Your schemes, politics, fail – lines give way – substances mock and elude me;
Only the theme I sing, the great and strong-possess’d soul, eludes not;
One’s-self must never give way – that is the final substance – that out of all is sure;
Out of politics, triumphs, battles, life – what at last finally remains?
In Danger Page 15
