My Story

by Jo Malone

  There was a café opposite the hospital. After a workout, I’d bob across for a sandwich or a snack. ‘You want anything, Mary?’

  ‘Cwa-fee,’ she said, while riding the exercise bike, pedalling at a leisurely pace. ‘A cwaf-ee and a donut!’

  God, I loved that woman.

  When my spirits were low, I’d walk into Larry’s office with a barrage of queries, moans and groans, which both he and Karen soaked up with infinite patience. More than once, I’d vent my frustrations, unable to maintain stretches of positivity, no matter how hard I tried. Angry thoughts didn’t totally go away and, as the chemotherapy took its toll, I used to resist its advancement and unfairly blame Larry for putting me through the mincer and then expecting me to emerge intact.

  ‘You keep saying I’m the same person,’ I’d say. ‘But how does anyone emerge from this as the same person?!’

  ‘Well, you are the same person,’ he’d reply. ‘But I think it might help if you go see someone and talk these issues through.’

  ‘Ohhhh, a shrink! Of course! That’s the answer to everything in America, isn’t it?’

  What a pain in the backside I must have been to this man trying to save my life and make me understand the nature of cancer. I was awful at times. I admit it. But Larry, unruffled and unfazed by emotional reactions that he had seen a thousand times before, simply scheduled an appointment with Dr Mary Massie, the psychiatrist who ‘specialises in the psychological treatment of women with breast cancer’.

  I told him that I’d begrudgingly see Mary for ‘counselling’ not ‘psychiatry’. Such semantics mattered to me at the time, though I’m not sure it did anything to diminish my bolshie resistance. On the way to a Sloan Kettering satellite office, my defences were up. I know exactly what I’m thinking! I know exactly who I am! I have cancer. I’m not messed up in the head!

  Mary, slim, studious, in her fifties, with round, black-rimmed spectacles and shoulder-length fair hair, greeted me warmly at the door with her gravelly New York twang.

  ‘Well, Mary,’ I said, sitting down on the sofa and folding my arms, ‘you’ve got exactly ten minutes to give me three ways I can get my life back, otherwise I’m out of here.’

  She raised her eyebrows, looked at her wristwatch and sat down opposite me. ‘Okay. Ten minutes.’

  ‘And you’ll have to turn that radiator off – it’s too hot. I’m burning up,’ I said.

  ‘Can I suggest you move away from the radiator then?’ she replied. ‘I can’t turn down the heating just for this session – it’s a joint heating system.’

  My pretence at control was soon dismantled. ‘Right, yes, of course,’ I said, shimmying to the other side of the sofa. She began to dismantle my resistance, too, explaining how women in my position often feel overwhelmed with emotions. ‘You arrive here with the same fears as every woman diagnosed with a life-threatening illness. Will I survive? If I get through this, how long will I live?’

  I softened as I listened but the process still felt futile. ‘But what’s the point? I mean, I’m going to die before you. Look at me, disappearing. Look at you, all lovely and healthy!’

  ‘How on earth do you work out that you’re going to die before me?’

  ‘Well, I’ve got cancer.’

  ‘And you’re being treated for cancer.’

  ‘Right, but—’

  ‘Jo, as healthy as I sit here today, I could go outside and be hit by a car and die. You could walk out of here and live for another fifty years. Your illness doesn’t have to be viewed as a permanent thing.’

  Mary Massie had me onboard in less than ten minutes. She understood the psychological devastation and the power of the word ‘cancer’. Indeed, as she explained, there was a time when doctors could never say it, preferring to use ‘lumps’, ‘bumps’ and ‘masses’. ‘But we can talk about it now,’ she said. ‘And we don’t have to allow cancer to affect the mind.’

  As to my question – how do I get my life back? – I wouldn’t get the immediate answer that I had demanded. But, over many weeks, she would help me keep matters in perspective, even on the occasions when I derailed slightly. I came to rely on Mary because, with each session, she helped me find the way out of a dense forest into a clearing where my thoughts felt less overwhelming. I must have seen her two times a week as we discussed my need for control and my anxiety about the unknown. We had conversations about God, about verses in the Bible, about spirituality. I would scream, shout, despair, cry, and sit with my head in my hands. Mary encouraged the raw emotion, wanting me to keep nothing suppressed.

  ‘Do you know why I think you’ll survive this process, Jo?’ she said one day. ‘Because you come in here and you’re truthful with your emotions. You’re not afraid to rant and rave. That’s not anger, that’s your fight. Don’t lose your fight, Jo.’

  In the end, I couldn’t wait for our sessions to begin, for the optimism and sense of stability that her insights brought. I couldn’t have been happier to be sitting in the psychiatrist’s room. Larry was pleased, too, I think – it meant he no longer had to face my bombardment of questions.

  In the middle ground between my cancer and my survival, in a bedroom that was fast becoming a colourful den of Lego, sat Josh, then nearly three, always playing, smiling, and being loving. Ironically, as I went through my darkest time, he would have only happy memories of those months in Manhattan: sledging in the snow in Central Park, throwing jagged pieces of ice into the frozen lakes, pizza at Serafina’s on 61st Street, and, of course, the hours spent at FAO Schwarz toy store, on the ground floor of the GM Building where Estée Lauder was based. Josh wasn’t interested in the jellybean counters, or the array of cuddly animals, or the famous floor piano. No, he darted off to find the Lego department, eyeing the castle that we’d buy him for Christmas two years later. What’s interesting is that these weren’t just any old memories; these would be his first conscious memories of life.

  The only cancer-associated memory he’d retain was the day I asked him to shave my head, but even that was couched as ‘giving Mummy a buzz cut’. I had started to shed so we wanted to involve him so as to dilute the shock of seeing me bald. We never hid the cancer from him. We said its name and told him why we were in New York, even if we did keep him away from the hospital. In being upfront and honest, whether he understood or not, we intended to remove the fear.

  A hairdresser came to the apartment for the haircut and, when we arrived at the moment of the shearing, she offered Josh the electric shaver as I sat in a chair in the living room, with a towel around my shoulders. He lapped it up, giggling as my blonde locks fell to the floor and Gary looked on. But then he noticed that I had fallen quiet, and I didn’t think fast enough to wipe the tears from my eyes. Josh stepped forward, looked at me, and fell quiet, too, thinking I was upset about my new style.

  ‘Don’t worry, Mummy,’ he said, ‘it will soon grow back.’

  Once done, the hairdresser grabbed the mirror to present my new back and sides. ‘It suits her, doesn’t it, Joshie?!’ said Gary. ‘Our own G.I. Jane! Isn’t she?!’ Josh started cheering, without really knowing what he was cheering; so I cheered with him, celebrating my new Demi Moore look.

  Two or three weeks later, there was a wonderful moment in a playground near the hospital. The nanny had taken Josh to the swings while I had a routine scan and blood tests. Afterwards, I went to join them and, as I approached the gardens, I noticed him in the distance, playing with another boy on the roundabout while the nanny talked to a couple sitting on a bench. As I got closer, it became obvious that Josh’s new friend was a cancer patient; he was gaunt and had no hair.

  I walked over to the nanny and that’s when I noticed the father was crying.

  ‘Are you that boy’s mother?’ he said, standing to greet me.

  ‘I am. What’s he done?’

  He laughed. ‘Have you any idea how magical your son is? My boy comes here every day and none of the kids will play with him because they’re too scared. But your son
came right over, took his hand and off they went to play.’

  I looked over and the little boy was laughing and squealing as Josh pushed the roundabout. He earned some extra Lego that day, and if anything positive came out of this time, it was the fact that he wouldn’t grow up being frightened of people who looked different.

  Roughly three weeks after receiving the buzz cut, I was relaxing at the apartment one evening. Gary was catching up on some work, Josh was in bed, and Steven Horn was round, cooking spaghetti bolognese. We were idly chatting about the movie we’d recently seen at the cinema, Love Actually, when I happened to scratch an itch on my scalp . . . and all these bristles dropped like dandruff. Not thinking anyone had noticed, I slipped off to the bathroom, rubbed my head with both hands and more bristles fell into the sink, like they do when a man has an electric shave. Eventually, my eyebrows and eyelashes would go and there wouldn’t be a single hair left on my body but, in that moment, as I stared in the mirror and realised that even the G.I. Jane moniker no longer fit, it was a horrifying sight. I seemed to be fading away – in hair, in weight, in presence. I looked like an emaciated, wizened, androgynous being.

  Meanwhile, Gary, who had quietly observed my rush to the bathroom, had prepared Steven – time for the men to steel themselves. None of my closest friends were ever frightened of my cancer, but that’s not to say they found it any easier to witness.

  When I emerged from the bathroom, Gary hugged me and asked if I was okay, not wanting to make a big fuss. I headed to the kitchen for a glass of water. Steven was standing at the stove, his back to me, stirring the spaghetti. He heard me approach but didn’t turn around, keeping his head down. ‘Another ten minutes and dinner will be ready,’ he said.

  ‘Steven? You okay?’ I asked.

  But he kept stirring the pan, as if I wasn’t there.

  ‘Steven, it’s okay – you can look at me.’

  He turned around and the tears were streaming down his face. ‘Jo, I’m sorry. I just can’t bear seeing you go through this.’

  The next morning, aware that I had refused a wig because it was too itchy and made me look like a mannequin, he unexpectedly turned up at the apartment with a gift: a Sex and the City baseball cap. Until that moment, I don’t think I realised how much the people around you share the pain and distress, yet it is so often suppressed because they don’t feel they have the right to voice it. While cancer hasn’t invaded their bodies, it certainly grazes them. And no one’s grazes were bigger than Gary’s.

  He had actually vowed to himself not to cry in front of me because he didn’t want me worrying. But as stoical as he was, I knew that he, too, was going through his own emotions. I knew it for sure one Sunday because Josh told me.

  They had both been to the park together and, that evening, I was the one who tucked Josh into bed.

  ‘What did you and Daddy do today?’ I asked him.

  ‘Daddy, cried – he cried a lot.’

  While the tears were inevitable, Gary kept us laughing equally as much, and that’s what I preferred to focus on. My cancer didn’t dim his humour and he’d search for the silver linings and be a constant source of amusement, sometimes unintentionally so. Like the day he returned from a haircut at Bumble and bumble., my favourite salon.

  Knowing it was my favourite, he brought me back a little treat, tucked inside a brown paper bag. I picked out the familiar plastic bottle, took one look at it, looked at him and asked, ‘What’s this?’

  He looked puzzled, as though it was a trick question. ‘Your favourite shampoo.’

  I stood there, non-eyebrows raised, saying nothing.

  Then the penny dropped. ‘OHHHHHHHHH!’

  What I loved about this gift was the fact that Gary still viewed me as the person he loved, unchanged; not a woman who was fighting cancer. We both roared with laughter and, you know what, sometimes the cliché is true – laughter really is the best medicine. Humour, like pain, is subjective but I needed moments of light relief to make an otherwise miserable experience feel bearable. And we didn’t toss away that bottle of shampoo – we kept it in the bathroom, looking forward to the day when I’d be able to use it again.

  A strange thing happens when you lose your hair and walk down the street in a city like New York – you feel conspicuous and invisible all at once. But even with my Sex and the City headgear, there was no hiding the sickly palour and the hairless nape of the neck that told everyone I was bald beneath the cap. I sensed the sympathetic glances from passers-by but also noticed those who didn’t wish to make eye contact. Some days, I found it hard to look at myself.

  I had a portable make-up mirror in the bathroom, with a magnifying side that allowed me to scrutinise every detail of my face, not for wrinkles or signs of ageing but for the drawn cheeks, scrawny neck and sunken eyes that I’d trace with my fingers just to feel that they were still mine. ‘You look awful,’ I’d say to myself. And I did. Which was why the bathroom, and those moments at the start and end of each day, became the place for my quiet crying. From the end of November, as my physical decline continued, I prayed a lot, too, saying silent prayers in my head, whether at the church down the road, or lying in bed. I didn’t ask God for much. I simply asked for the strength to get through because the weaker I felt, the more I wondered about making it.

  I maintained the medical rituals, rubbing Cetaphil moisturising cream into my scalp to stop it becoming flaky; gurgling with Biotène mouthwash to prevent mouth ulcers; and downing the anti-sickness pills to stop me from vomiting. But there was nothing I could do about the memory lapses. Let me tell you, ‘baby brain’ in pregnancy cannot hold a candle to ‘chemo brain’ – I’d walk down the street and forget where I was. As for imagination, forget it – my mind was too tired to wander anywhere. What with the daily injections and chronic fatigue, it felt like I was spending most days either sleeping or dealing with side effects. But I kept marking down those ‘X’s on the calendar, through Halloween, through Thanksgiving, and into the final month of treatment – December.

  That’s when the snow came and I developed the most awful neuropathy – a condition that causes a maddening itch within the hands and feet, but it’s an itch within the veins that can’t be scratched. Think of the worst case of chilblains and times it by a hundred.

  There must have been two inches of snow on the ground when Steven took us to choose a Christmas tree in Union Square. On the way back, after ordering our tree for delivery, the itching was so unbearable that we stopped at a Starbucks for respite. While Gary bought a round of hot chocolates, I sat at a table, removed my shoes and socks, and scratched the soles of my feet more furiously than a dog with fleas.

  ‘Oh, my Gaaad, that is dis-gusting!’ said a woman sitting nearby.

  Steven almost flew at her. ‘Hey, lady, have you any idea what—’

  But I stopped him. ‘Let’s go,’ I said.

  I didn’t want the aggro or the sympathy. I just wanted the itching to stop.

  We flagged a taxi, but, as my feet continued to burn up, I asked the cabbie to drop us four blocks from home. In the street, using Gary for balance, I again took off my shoes and socks, then padded through the snow barefoot – it was all I could do to extinguish the fire in my nerve endings. I don’t think I have ever been so happy not to feel my feet due to the numbing cold.

  The one person I turned to throughout this itching torture was a gentle soul called Dr Lily Zhang, the acupuncturist whose expertise was used by Sloan Kettering to alleviate side effects. I had seen her every fortnight since being in New York. When she inserted those needles into me for the first time, I felt my body fill with energy. I started to understand why the Chinese swear by this traditional medicine. I swore by Dr Lily, as well as the apple-spice tea she served in her Zen-like office with its bamboo shutters and a trickling waterfall in the waiting room. I felt so safe in that space as I lay with ice-cold towels draped over my hands and feet while she worked her magic, bringing me relief.

  One night, I had a
temperature so high that there was talk of me being admitted into hospital, but the doctors were wary about the risk of infection so I stayed home and Dr Lily came to me. My body was obviously fighting something, because I was dripping with sweat and aching all over. ‘We do some things, then you relax,’ she said.

  She inserted her needles then sat at the foot of my bed, reading a book. That woman brought my temperature back to normal in less than two hours – she was a miracle worker. Once her job was done, she packed away her tools and off she went. I’ve never met anyone in alternative medicine who can compare to her and, bit by bit, she pulled me through the chemotherapy, the final dose of which was on Tuesday 23 December 2003 – an occasion I was determined to mark in style.

  I had been anticipating this date for sixteen weeks, and knew exactly what I was going to do: I was going to have the last word. I was going to take back from cancer what it had taken from me in the summer of 2003.

  On the morning of my final dose, I applied make-up for the first time in weeks, wore my black Armani suit, and slotted two diamond earrings in my pocket – a repeat of the outfit I should have worn to the Serpentine Gallery party before my diagnosis ruined the evening. Symbolically, this was my way of picking up where I had left off.

  I arrived at the clinic overdressed to the nines, aware that every other chemo patient would be wearing the usual comfortable clothes: tracksuits, sweats, t-shirts. Edna, the Russian nurse who administered my every dose, didn’t bat an eyelid as I strode in, head held high, looking glamorous – she understood what the day meant and she wasn’t going to make a big fuss. No one made a fuss at Sloan Kettering. Be who you want to be. Do whatever you need to do in order to get through. That’s the philosophy.

  I’d be sick over Christmas but I didn’t care because this was the final lap. I took my seat in one of the ‘chemo cubicles’, rolled up my suit sleeve, relaxed into the chair, rested my head, and closed my eyes. And as I felt that cold juice coursing through my veins one last time, I smiled.