My Story

by Jo Malone

  I managed to get through Christmas morning for Josh before we headed to Steven’s for the turkey and trimmings, although I fell asleep for most of that afternoon and evening. I didn’t expect a memorable festive time, but he and his friends did their best to recreate the magic.

  The spirit of Christmas past will forever contain elements of the magic that Mum and Dad created for me as a kid. Conversely, there had been many Christmases since when we hadn’t spoken at all. During our stay in New York, my parents called me a handful of times, maybe once every two months. I remember Dad crying in one call, saying he wished I wasn’t so far away. And yet we had been so far away for so long, even when we were in the same country.

  My mother-in-law, Maureen, was amazing at this time, and she flew out to spend a week supporting me and looking after Josh. Gary’s Dad, David, shaved his head the moment my hair fell out in a show of bald-headed solidarity. ‘And I won’t grow it back until yours has grown back,’ he promised. I honestly don’t know how I would have got through those months without the special people in my life.

  Among them were women in New York like Evelyn Lauder, Rose Marie Bravo and Town & Country editor-in-chief Pamela Fiori, who turned up unannounced on my fortieth birthday in November, armed with balloons, cake and sorely needed cheer. ‘Honey, we weren’t going to allow you to celebrate alone!’ said Evelyn.

  London friends sent care packages filled with British tea bags and M&S treats. They wrote letters sharing their news, attaching photographs of different events attended and occasions celebrated – their way, in those pre-Facebook days, of keeping me updated and involved.

  I would also lie in bed, close my eyes and imagine dinner and laughter with my circle of friends. I’d go there in my mind, reliving past events and favourite memories. I’d visit our home, too, and ‘walk’ from room to room, wanting to feel its comfort and familiarity from three thousand miles away. But on Boxing Day that year, I didn’t need to imagine my London life. Because two London friends came to me.

  Gary had been saying how he had bought tickets to the circus and wanted me to get dressed. All I wanted to do was lounge around in my dressing gown, but I made the effort for Josh. Around noon, as we prepared to leave, Gary made himself scarce, and that was when the doorbell rang. Expecting it to be a delivery, I answered the door . . . and my friends Joel Cadbury and Ollie Vigors were standing there, having jumped on a plane that morning from Heathrow. Suddenly aware that I was without baseball cap, I picked up a book from a side table in the hallway and used it to cover up my baldness. ‘Don’t look at me! Don’t look at me!’

  Joel rolled his eyes. ‘Do you think we care about that?!’ he said, hugging me.

  Their visit made my Christmas, and Gary had secretly made up stockings so that everyone had a present to open before we went to lunch at the Mandarin Oriental. For a second, I could have kidded myself that everything was back to normal. Indeed, in the knowledge that I had completed my final cycle of chemo, ‘normal’ was just around the corner – 2004 couldn’t arrive quickly enough.

  When I next saw Larry, in the first week of January, the only thought on my mind was ‘the switch’ – the swapping of the tissue expander for my permanent implant. Get that done, and I could go home. I arrived for my appointment full of relief that this day had finally come.

  ‘Okay,’ I said, with a sigh. ‘We made it – the end!’

  Only it wasn’t the end. I could tell by the look on Larry’s face.

  ‘What’s wrong?’ I asked.

  ‘I don’t think we’re quite finished, Jo.’

  ‘What do you mean? You said sixteen weeks. Sixteen weeks of chemotherapy and I’d be done. That’s what you said, Larry. I’ve done everything you asked. I can’t do this again . . .’

  I could feel myself shaking as I spoke; part dread, part anger. But Larry, as gentle and compassionate as ever, explained that not all treatments run to plan. ‘I know it doesn’t seem fair but it’s important we get this right. I’m sorry, but the chemotherapy has to continue.’

  The prescription of potentially another sixteen weeks threw me completely. My approach to life is to know the plan, the timetable, and the direction, and to stick to it – to know where the finishing post lies. Now, after crossing that line, and dressing up to celebrate the victory, I was being told to return to the start and rerun the marathon.

  Larry could see my dejection. ‘I asked you to trust me at the beginning,’ he said, ‘and if this wasn’t necessary, I wouldn’t be putting you through it.’

  Fall. Get up. Dust yourself down. Get on with it. Turn the page. That’s what I told myself. Later that day, I bought a second calendar and marked out another sixteen weeks, to be chalked off with an ‘X’, day by day, from January to April 2004. Instead of Christmas, I now set my heart on the change in seasons, from winter to spring.

  That same week, I received a photograph in the post from Ruth Kennedy: a framed holiday snap of her, me and our friend Jane Moore, the author and journalist, in a restaurant in Venice. And across the top of that picture, Ruth had written: ‘One day, you will wake up and feel on top of the world.’ I pinned it to the top of my second chemo calendar – a daily reminder of another finish line that I had to cross.

  Even though I wouldn’t repeat the exact same cycle – the chemo would now be administered in smaller doses much closer together – the second round hit me harder than the first, mainly due to the continued cumulative effect. It also meant that I couldn’t have the implant fitted, meaning another four months wearing the uncomfortable tissue expander, which, come Christmas, couldn’t expand any more.

  Physically, my body felt against the wall. Mentally, I really didn’t know how much more I could give. My chemotherapy-scrambled mind couldn’t think straight, became easily confused, and my memory lapses seemed greater than ever before. The spirit within me wanted to fight but sometimes I wondered if I had the strength. Some nights, it felt like I was on the edge and cancer was winning.

  It certainly felt that way in the early sleepless hours of one morning, sometime around March 2004.

  Gary was fast asleep beside me at the end of a particularly rough day. I felt as poorly as I had ever felt. My temperature was high, the sweats and aching wouldn’t stop, and there was a great rash across my torso that resembled a burn. I didn’t even have the energy to roll over on to my side. As I lay there, still tasting the ulcer-preventing mouthwash that I’d swilled before bed, I heard and focused on Gary’s breaths: his lungs full of life; mine, feeble and wheezy. In the dark, I reached over with my right hand and placed it on his chest to feel the rhythm of him sleeping soundly. I closed my eyes and kept my hand there for a while – each of his breaths anchoring me.

  I was too scared to sleep, because I had convinced myself that I wouldn’t wake again. What scared me was the sense of calmness that surrounded the fear, and that calm sent my mind racing. Was I calm because I was accepting it? Is this how death happens? You reach the nadir of suffering and then the body meekly surrenders as you sleep? Whether in my mind or body, death seemed close enough to frighten me.

  I lifted up the duvet and looked at my skinny frame – there was nothing really there; nothing I truly recognised as me. I pulled the duvet up to my chin, and, even though Gary was beside me, I felt panic – a panic that I had probably generated with my own downward-spiralling thoughts but a panic nonetheless. And I felt a compulsion to see Josh, regardless of how weak I was.

  I slipped out of bed on to my knees and I crawled across the carpet, on to the landing, into his room, towards his single bed, where I placed my hands on the safety bar and kneeled there, looking down on him, in his pyjamas, on his back. I now listened to his breathing – slight and full of innocence. I hated what cancer was doing to me, and I hated the idea that it could take me away from my son. I spoke to God there, though it was more a plea than a prayer. ‘Please, God,’ I whispered, ‘I don’t want to die. Let me see my son grow up. I don’t care what I have to go through, but let me se
e him grow up.’

  I kept watching Josh because just being with him brought calm. I gave it a good ten or fifteen minutes before crawling back to bed and, as my head sank into the pillow, I felt instantly at ease, no longer scared of the dark. Gary was still fast asleep. I tucked my hand into his and closed my eyes.

  I had a dream that night, one that I remember as vividly today as I did the following morning: I’m sitting in a swing chair in a garden on a summery day. I feel utter peace. I’m holding a glass of white wine. I glance at my hand and notice brown spots – the aged skin of an elderly woman. I look up. In the distance, I see Josh as a grown young man, with his arms around a girl, and they are giggling out loud. And that’s the only sound I hear and then I sense someone telling me, ‘This is the day I’ll call you back . . .’

  It may have just been a dream but it gave me one more thing to hold on to – and, psychologically, it would mark a turning point.

  TWENTY-THREE

  I sensed my ‘fight’ returning while having lunch one day in a small Italian trattoria eight blocks from the apartment. It offered the tastiest home-made pasta but, more than anything, it rarely got busy and the tables were nicely spaced apart – important factors when, due to my vulnerable immune system, I had to be wary of other people’s germs. That’s a point worth noting: a cancer patient is the one who’s at risk of catching something, not the other way around.

  There was only me and one or two others in the restaurant on this particular day – Gary was flying back from London that evening – and I was tucking into a bowl of spaghetti when I noticed an old lady walk in, swamped by a big fur coat, and accompanied by a young man who turned out to be her grandson. The waiter showed them to the table next to where I was seated. There must have been three feet between us but, as I took a sip from my glass of water, the woman was eyeing me warily. I had grown used to frowns and stares, so I ignored her. Yet even though she said nothing, her discomfort remained loud.

  When the waiter returned to take her order, she spoke to him from behind a cupped hand. Then she gathered her handbag, stood and moved with her grandson to the other side of the room, making me feel contagious, unclean, like I had the plague.

  How dare you do that to me!

  I didn’t take my eyes off her as she relaxed at her new table, seemingly comfortable now that she had removed herself from potential harm. I placed my fork and spoon in the bowl, dabbed my mouth with a napkin, stood and walked over. She looked aghast at the sight of this fast-approaching disease, dressed in an

  Abercrombie & Fitch sweatshirt, white Gap jeans and a baseball gap.

  ‘Excuse me,’ I said, polite but firm. ‘Can I just say how hurtful that was. Can I also point out to you that I have breast cancer. You can’t catch cancer by sitting on the table across from me. You can’t catch cancer even if we were to hold hands.’

  She blanked me, nonchalantly avoiding eye contact, but I had made my point and she heard me. I returned to my table and ordered coffee, feeling a little proud of myself for standing up for myself and for everyone else whose humanity is ignored because of an illness. A minute or so later, the young man came over. ‘I’m so sorry,’ he said. ‘My grandmother – she’s from a different generation.’

  ‘No need for you to apologise,’ I said. ‘I thought it was rude, so I had to say something.’

  He and I went on to have a pleasant chat about my treatment and my time in New York. The lady, too old to give a damn, never came across or said anything, turning her head as I paid my bill and headed out. Sadly, this wasn’t an isolated incident.

  That same week, I had gone shopping at a famous apparel store, in search of a cashmere sweater for winter. I felt lousy and probably looked terrible, but even cancer patients need retail therapy now and again. I was browsing a circular table, picking up one sweater after another when a stroppy shop assistant hurried over. ‘Can I help you?’

  ‘No, thank you. I’m only looking.’

  ‘Well, if you’re only looking, please don’t touch the sweaters.’

  ‘I beg your pardon?’

  ‘Just don’t touch the sweaters, honey.’

  Translated – you have no hair, you’re ill, and you’re infecting our clothes.

  I looked at her; she looked at me – a battle of wills. And so, like a child wrecking someone’s sandcastles on the beach, I used both of my hands to fan, ruffle and scatter the entire collection of sweaters, leaving them in disarray. I turned on my heels and left the young lady to pick her chin up off the floor.

  I hadn’t felt so empowered for months – back to being the disruptor, my old self. And as I walked down the street, I heard Mary Massie in my head. ‘Don’t lose your fight, Jo. Don’t lose your fight.’

  Mary continued to be a source of strength. I took my vivid dream into one session and explained how close to the edge I had felt that night. What bothered me, I told her, was that my every waking thought was consumed with my illness. All I seemed to do was bounce between the apartment and hospital, and the link between ‘A’ and ‘B’ was cancer. Every task I did revolved around cancer. Even New York felt like an all-immersive experience of cancer. It was in me and around me, and I wanted it to stop. ‘I get up every day and it’s all I think about. I go to bed at night and it’s all I think about. It’s even in my dreams.’

  ‘Explain to me why you think about it so much,’ she said.

  ‘Because I’m fighting it, and it’s hard to forget what you’re fighting.’

  ‘Jo, the more we think about something, the more we expect it, the more it’s there. A day will come in the not-too-distant future when you’ll think, “Oh, I haven’t thought about it in the last hour”, and then, “Oh, I haven’t thought about it all afternoon.” But we get there by not attaching to the thought of cancer. You make it sound as if the thoughts are in control of you when they’re not.’

  She made me see that the less I ruminated, the more room I would have to think about life in general; the less intense my focus on the disease, the more I’d be able to appreciate the bigger picture. We spoke about my creative process and how I choose to focus on fragrance; likewise, she said, you can choose not to focus on something. How ironic that I, this woman who needs to feel in control, couldn’t control her own thoughts.

  With practice, and fortified by those moments in the Italian trattoria and the apparel store, I found more room to focus on the horizon, rather than just the spot where I stood. As Mary said, it was the doctors’ responsibility to focus on dealing with the cancer; it was my responsibility to keep the mind focused. I was done with feeling lousy, with crying, with being constantly fatigued. I wanted to fight for the future portrayed in that dream. I hadn’t felt so determined in months. And, as things would turn out, the arrival of this renewed defiance was well timed for the next challenge that lay around the corner.

  A month or two into my treatment, I contracted shingles, which was a worrying new side effect because it wouldn’t take much for a virus like that to turn into a critical condition. For my own good, I was hospitalised and placed in isolation – a bubble within my New York bubble. I didn’t care that I felt cut off from everyone else. Those four walls felt like my safe room, protecting me within a pocket of air that only I could breathe. Doctors, nurses and caterers, even Gary, had to gown up each time they came in to see me. Two weeks in a bubble is a long time, let me tell you. But there was an unforeseen benefit to having this virus – Larry halted the chemotherapy.

  He said the virus was a sign that my body had taken as much as it could. ‘It’s over, Jo. You’re finished,’ he said – the words I never thought I’d hear. More than six months after my mastectomy, I could now look forward to ‘the switch’ and finally go home. All I had to do was have a final scan to make sure everything was okay.

  Days later, I underwent the scan without an ounce of apprehension. I couldn’t remember the last time my mind had been worry-free. I joked with the nurses. I told them how excited I was to return to London. Afterward
s, I sat in the waiting room, awaiting the formality of the results. And then Dr Heerdt walked in, sat down beside me and gently explained that they had detected something suspicious in the other breast.

  As much as this news was a sucker punch that winded me, I wasn’t frightened. I wasn’t frightened because the instant she told me, I knew exactly what I was going to do. This time, I would be the one calling the shots, not cancer, not the doctors. In fact, I had never felt stronger as Dr Heerdt showed me the scan, pointing out speckles of calcium deposits that concerned her. Such deposits can sometimes be an early indicator of cancer, and sometimes they can be nothing. ‘But we’ll have to keep an eye on them,’ she said.

  I didn’t even ask another question. ‘I’ve had enough, Dr Heerdt,’ I said. ‘I’m not living with that kind of worry. Take it off. Book me in for another mastectomy.’

  She, and Larry, implored me not to be so rash, to sleep on it, to go speak with Mary Massie. But I was emphatic. I wasn’t going to live with a one per cent chance of cancer returning. ‘I don’t care what anyone says, I am never going to go through this again.’

  I knew what this decision meant: more surgery, more pain, another scar, and another damn tissue expander to join its ever-lingering companion on the other side. But a few weeks of discomfort was preferable to years spent worrying. Knowing the nature of my mind, that’s exactly what I would have done, forever checking for lumps and going through the anxiety of cancer possibly returning. I didn’t want that sword hanging over me, which was why it didn’t even feel like a big decision. In the scheme of life, and with my heightened appreciation for that life because of everything I had gone through, a preventive, prophylactic mastectomy was no price to pay. In fact, it would be one of the best decisions I would ever make. And that was the point – it was my decision. My choice. I was eliminating risk, claiming my survival and doing it on my terms.