Blaise sent me an email telling me that MM had died. He lives in Bangkok but knew M from Durban 30-something years ago when they were all young and reckless and falling in and out of love. He’d seen a notice of her death on FaceBook.
The last time I saw M we were in the cancer ward at the Donald Gordon hospital, waiting to be fed our chemo cocktails. There we sat like addicts in an opium den, waiting for a chair so we could be hooked up to our very own vial of poison. I didn’t know M, though we shared a disease, an oncologist and a macabre black humour. For all of an hour of conversation with each other, we laughed at our parlous state of being. And, wordlessly, cracked a nod at each other’s pain and fear. And dread.
I didn’t know M, though I knew of her through mutual friends and the myriad intersections that connect journalists in Johannesburg. In just this way, she knew of me, and wrote to me after my first blog in July last year.
“Hi Charmain I didn’t know how to get hold of u so sent a request via facebook. I have been living with breast cancer for five years so can relate to your blog. U have many more characters to meet in the parallel universe u r now entering…. Don’t be reticent to ask for help; it’s not something u need to do on yr own. I also found tt part difficult but got over it. Hang in there. It’s not something u want to do or really choose to do but u find yourself in a very different world and one u had no idea existed! Take care M”
Then, in November, I followed up, sending a complaining message about how awful I felt, how exhausted… I had lead in my bones and couldn’t lift my head off the pillow, I wrote, ending with a question: how are you?
M sent me this:
Hi Charmain I am not feeling too bad but dr M has reduced my chemo amt for t last two sessions which has made the difference between functioning and not functioning. Well functioning right now is lying on t couch emailing u! Positives, your next chemo will not be red….. U will get to put your hands in ice gloves. Do tt it makes such a difference to your nails. I have a week off next week which always gives me a little taste of “normality”. Take care dear one and we must keep in touch. M
We didn’t. I quit chemo at the end of November so our paths at the onco ward never crossed again. And now MM is dead and I am deeply affected by the death of this dear woman who I did not know, who I spent no more than a few hours talking to, this woman who – in a way – is my reflection in the mirror. No, not my reflection, but a reflection. She fought so fiercely, keeping on and on with the chemo after her breast cancer had metastasised into another part of her body. But she succumbed in the end and the chemo did not save her.
I am not quite sure why I am so utterly shaken by M’s death. I suspect it’s because she’s the first person I met in the cancer ward who’s died. Because her dying suddenly made cancer very real – if that makes any sense at all.
Within days of M’s passing, a friend’s beloved aunt died of cancer. Hers was a different kind of cancer to mine, but we’d had our tumour removing operations within weeks of each other, which sort of sealed our common fate. She’d had body burning radiation and seemed to be doing so well. And then her body hiccuped and bucked against the brutality of the treatment and so began her decline. Have you seen death notices? X died after a long battle with cancer, bravely borne. Bravely borne? Bravely Borne? As if there were such a thing. That absurd Irish avant-garde playwright, Samuel Beckett, famously wrote: I can’t go on. I’ll go on.
Is there any other way? It really is a mantra for life, isn’t it? It’s that teeny little niggle that gets me out of bed in the morning when my joints are so sore I think my hip bones might give and I’ll topple onto the parquet flooring. It’s that silent voice in my head that stops me from slicing my wrists open when I wake bathed in sweat after a night terror. It’s that thing that keeps those with nothing left to live for from jumping off bridges.
Courage, GW once told me, is fear walking. GW – Gillywinks, my AA sponsor – is the woman I rely on most often to keep me on a righteous path in my recovery, in my life. It’s a hackneyed old phrase, but I thought it was the most astonishing thing I had ever heard. I could actually see it in my mind’s eye – the stick figure Fear walking, masquerading as Courage, a little puffed up, a little bent over, flinching at unfamiliar sound, Fear putting one step in front of the next in front of the next. It truly blew me away that first time I heard it, pronounced by dear GW with her customary sincerity. Going on when you can’t: it gives form to the inevitability of life, the inexorable path that we are on, that our life force refuses to let us abandon. On we go, even when we can’t, because we must. Because to get off the path would be to abandon all hope. And those who do – abandon hope and return to their maker before their time is up – are destined to come back and back again (according to Hindu lore) until they’ve learnt to go on when you can’t. That seems to be the common reincarnation interpretation: that some level of wisdom needs to be attained and each biological life provides us with a blank slate to reach a purer state so we can advance spiritually. My mother, a staunch Catholic, would brook no argument about the possibility of anything other than the conventional version of Catholic heaven and hell. And so we Naidoo children were an island of Christian solitude in our narrow, enforced belief system – surrounded as we were by Hindus who believed in karma and reincarnation. Hindus who celebrated Diwali, or the festival of lights in which exquisite tiny clay lamps were lit in windows across our suburb – lights that signified the triumph of light over dark, goodness over evil. You’d have thought that this was a fairly standard religious tenet that could have been the mission statement of just about any religion other than, possibly, the dark arts or black magic. And anyway, it seemed unhealthy to so completely exclude another religion when we lived in an Indian area, in an Indian environment. In fact, it could be construed as being a little dangerous that our devout Catholic mother thought that our neighbours were, essentially, idolatry heathens who worshipped images and false gods. It would be wrong to say that our mother held our neighbours’ religion against them. She just felt superior in her belief that hers was the true God, that hers was the only genuine way to get into heaven.
Who could blame mama? She’d been schooled by the Missionary Sisters of The Precious Blood at Little Flower School in Ixopo. Apparently these sisters, mostly German – their order was founded in Switzerland in 1833 – “responded to the needs of the Coloured community in the Ixopo area by offering to educate their children.” And so in 1923 (the year mama was born) an iron shanty was built to house eight pupils and the school opened. Eight years later, Norma Therese Maharaj was shipped off from her home in Dundee in northern Natal to be educated by the nuns. She was a bit of an anomaly with her Indian surname (grandpa was a high caste Maharaj), her pale translucent skin inherited from her coloured mother. Her ID book said she was Indian, but she looked coloured, with the light colouring and her curly brown hair. So perhaps she did fit the racial classification requirement. When she was turned over to the nuns, her dose of behaviour modification and mental re-education began… and it was intense. To the day she died, she told stories of cruel and unusual punishment meted out to her in a way that denoted that she deserved it, that the nuns were right to starve and humiliate the girls. These young girls came from poor working class backgrounds. My Indian grandpa, Frank Sewlall Maharaj was an assistant mechanic for a car repair workshop in Dundee, my coloured (her mother was Zulu, her father French) granny Alexandra (Ally) Maharaj (nee Vere) worked as a chambermaid at the only hotel on Dundee high street. They had no car. Granny Ally, ably supported by grandpa (a recent convert to Catholicism from Hinduism) believed in a wrathful God, whose servants on earth were Priests and Nuns. These very sisters were offering to educate this little Coloured girl, to shape her faith. And so they delivered their daughter into the hands of the Sisters of the Precious Blood. Only the nuns did more than that. They turned my mild mannered mother into something of a zealot. They warped her thinking so completely that she stopped seeing shades of grey, her world became a checker board of good and evil, right and wrong. Mum often told the story of how the nuns, sitting by their warm hearth on a bitter winter night, had the girls file past to say goodnight. The hungry girls, who’d had a meager dinner of thin gruel and a hunk of bread marched past sing-songing: Good night Sister Annunciata; Good night Sister Mary Magdelena; Good night sausages, this last to the plump sizzling wurst which would be the nun’s supper. “That’s so cruel, mum” we’d say when she told us the story. But my mother was insistent: It was character building and taught them (her) discipline.
Then there was the incident with the apricots. The nuns had an orchard and the girls were expected, as part of their chores, to pick the apricots, split them open to remove the kernel and lay them out to dry on the roof. Because the girls were often hungry, they’d fill their skirt pockets with handfuls of fruit. But my mother, an innocent, was caught coming down the ladder with fistfuls of newly split apricots in her little hands. For her sins, she was made to kneel on apricot kernels for half an hour. And she was only 10! We, her children, were outraged on her behalf. My sister Antonette asked to be told the story over and over again. She cried every time. But mum said it cured her of any thieving thoughts she might ever have had. And it is true. My mother was scrupulously honest. To be fair to her, the cruel treatment she received at the hands of the nuns weaned her off violence for life. Never once did she use pain as a punishment for her children. She abhorred any form of corporal punishment and refused to take away a child’s dignity by humiliating them through hitting. That’s what she believed and so ours was a non violent household. Apart from our childish scrapes involving hair pulling and biting and scratching, nobody ever got hit in our house. Except for that one time, when I was 16, when dad slapped me across the cheek. I’d gone – with Shaun and Antonette – to a matinee at our local cinema. Dad dropped us off, and would fetch us two hours later, when the movie was over. There was no wiggle room for any form of bad behaviour. Certainly no snogging (or worse) behind the shed; boyfriends were forbidden. And so when, two hours later, Shaun and Antonette ratted me out – I’d sat in the row behind them and held hands with a boy called Bryan – my father called me a bad name, and slapped me across my face. We were all so startled by this extraordinary act that everyone was speechless. There was sudden silence. Even Timmy, our Jack Russell who’d been yapping and running back and forth in his neurotic way (he was my mother’s dog) sat back on his haunches, shut up and cocked his ear. The look on my mother’s face was, at first, surprise. Her brows knit in a question as her head dropped to one side. Shaun and Antonette were open mouthed, an O that matched their eyes. And then the full import of what had happened hit mum and the surprise, perhaps even a little confusion, was replaced with red blotches on her pale skin. It was time to be afraid. Red blotches meant apoplectic rage, usually followed by screaming and the thrashing of fists – helplessly useless fists punching air. My father stepped back, alarmed, his hands coming up to his face, across his mouth. Mum’s look of withering contempt almost dropped him at five paces. We waited for primal sound to emerge from our mother, but nothing came. She was calm and that made us all a little more afraid. My mother was never calm in times of distress. She panicked. She shrieked. She beat her breast. She prayed. Calm was not a word we associated with my mother. When she did speak, it was to me, snivelling, snotty, aggrieved me. Me standing there with my father’s handprint on my left cheek. “Charmain,” she said in a quiet voice, “we’re going for a walk now. When we get back, your father will apologise to you.” Then she took my hand, nodded at Shaun and Antonette to follow, and we – all four – left the house. We were a somber quartet, songless but with loud raspy breathing that might have passed for song. Down the crazy path we walked, to our front gate. Out onto the rutted dirt road in front of our house. Right passed WindsorHigh School, where my father was headmaster, my mother the librarian who also taught history and biology. Down the track towards the river we went, in silence, holding hands. A protest line. Defiant picketers walking against violence in the home. If someone had broken into song, it would have been We Shall Overcome, possibly accompanied with fists raised in the air. But we were silent. Finally the biology teacher in mum broke through and she stopped to give us a lesson, to point out grasses indigenous to Natal. When we were on the riverbank, mum reminded us never to go into the bilharzia infested waters. Then we sat on the bank and made whistles from the river reeds, blowing and laughing and forgetting for a minute that the oldest Naidoo daughter had been slapped by her father, had been called a tramp by her father, which so not true, which was so undeserved, which was so unfair, which entrenched her fear of intimacy and really paved the way for a lonely life. All that in one slap. Poor dad. He wept when we got home. And apologised, although he did not hug me. My father was not given to tactile displays of affection. If you hugged him, his body went stiff as a board, his arms remained at his sides. He could have been a Doric pillar but for the softness of his flesh and the smell of him – a mixture of brylcreem and Old Spice. And so the most dramatic event of my young life was over. We went on, the five of us (Anton was at boarding school). Conscientious objectors. Mahatma Gandhi’s. And all because the Sisters of The Precious Blood had been cruel to my mama.
And so the die was cast, and by the time my mother was a teenager, she was steeped in Catholic doctrine and dogma that would follow her all of her life. Much of her life was spent in prayer, in devout contemplation. A longstanding joke growing up was that Mum should have been a nun. What with her obsession with God, she should have been a bride of Christ, ministering to the poor, making sure that no little girl ever had to say goodnight to a spitting sausage as she made her way to bed, hungry. I wonder what she’d say if I told her that I thought she and I had known each other in a myriad other lives; that I thought that we’d been thrown together again in this life for us both to learn lessons and that sadly, we’d both failed and were destined to be together again in another lifetime. God forbid. If I’d said all that to her, she’d probably have spent more time on her knees, praying for me: a novena or two; money to Father to say mass for my soul.
No, reincarnation was not a possibility for my mother. But there was one thing she was good at: the art of carrying on. My mother had a sigh that made sighs sigh. But maybe that was because she could endure things. Like her famously bad back or the terrible headaches during which my dad’s booming voice was reduced to a whisper and us were sent to our rooms with a book to keep us from speaking. These words were meant for my mother: I can’t go on. I’ll go on!
I can’t play the piano. My little brother Shaun (God bless him) could. He was a brilliant pianist and made a career out of it as a composer of a new form of classical music that made him quite famous – his pieces were performed by orchestras across America. But then he choked on a piece of steak in a restaurant and died, silly Shaun, and broke my heart. But he could play the piano, clever Shaun. Really, really well. I can’t. Play the piano. It’s something that made my mother grind her teeth in frustration. Her faith in me was touching, if a little misguided. You can do anything, she used to say, if you put your mind to it. I am not an opera singer, although I used to have an angelic voice which the younger me raised in praise of God at Sunday morning mass in the Catholic church at the top of a hill in my home town Ladysmith. My mother gnashed at that too. She thought I could have been an opera singer. I certainly was built for it in that Jessye Norman/Nellie Melba sort of way. A large chest and a head for the high notes. Mrs O’Neill, my music teacher, thought I had potential too. She called mine a big voice. But it was all over before the fat lady had a chance to sing. I started smoking at 16 and ruined my voice forever.
As for piano lessons, I quit after three months of banging out chopsticks heavily, tunelessly. I never could quite distinguish my arse from my assai, my adagio from my adagietto. It was hopeless from the start. I loved listening to the piano. But being played by Arthur Rubinstein or Vladimir Horowitz. Not me!
Then there was the needlework phase. Mrs Singh- from-next-door was a magician with her sewing machine. She produced perfect white trilobal safari suits for my father, complete with military style epaulettes. Short sleeves – for the heat you know – and fold over pockets. Some had a rather useless belt that tied round Dad’s ample middle section, and fastened at the front with a big buckle. He wore his suits like a uniform: with white socks and white shoes, shoes that MaKay the gardener kept white with a special white cream smoothed on carefully with a sponge. Once applied, the shoes had to be dried out of the sun or they cracked. It was the 60s and Dad was at the height of fashion. Roger Moore wore his toffee coloured safari suit as James Bond in The Man with the Golden Gun! Ted Lapidus, the French designer, dressed Paris’ crème in them.
In fact, both my parents took to 60s fashion with a gusto. Poor Mrs Singh- from-next-door was commissioned to turn synthetic wrinkle resistant crimplene in vermillion or peppermint or sage into little numbers for mum to wear to school or church. Once they were stitched, they were sent off to a man whose name I can’t remember, but whose embroidery – by hand – was legendary in our small town. Painstaking patience was needed to cover the bodice of a minty crimplene dress with clumps of saffron roses, or to edge a loose fitting oatmeal coloured trilobal frock with perfectly symmetrical embroidered gold stars… My favourite Mama outfit was a jaunty little thing in navy with white piping and a dropped waist. SO Chanel. But with sleeves. “I can’t abide my arms,” my mother used to say. I now know how she felt.
It was on one of those visits to Mrs Singh- from-next-door’s sewing room that they, the two women, devised a plot to teach me how to sew. “It will fit better. And save you a fortune. Always. Shop bought is terribly expensive,” Mrs Singh- from-next-door would say every time she got me to thread the needle of her Singer as we prepared to practice hemming. I was also expected to learn how to cut cloth from Butterick or McCalls patterns! The very idea set my nerves on edge, and I hadn’t even had my first panic attack yet at 15.
I did not want to be Mary Quant or Yves St-Laurent or Oscar de la Rente. I tried, but in the end I gave in and gave up. I hated sewing. To this day I can barely thread a needle without wincing. I have to take to my bed for a lie down if I have to re-attach a button. I’m not a sewer. Needles and thread do not give me the kind of thrill that they gave my cousins who produced the kind of clothes that Paco Rabanne wouldn’t have turned his nose up at. My utter lack of sewing ability did urge me to earn a good enough living where I could afford to buy prêt a porter. Thank God! (Take that Mrs Singh.)
Norma fluttered her hands in front of her face and sighed her disappointed sigh and bemoaned the fact that I could never stick to anything. Which really was not true. If I found something interesting, or useful, or necessary, I certainly managed to give it the kind of attention it needed.
But I have never lost a moment’s sleep worrying about not being able to play the piano, or sew. Though, if truth be told, there has been the occasional twinge of regret at not giving Opera a shot. I love the idea of me as Maria Callas, with her shaky middle register, in a full throated (heart breaking) rendition of Vissi d’arte in Puccini’s Tosca. Before she throws herself off the battlements! I’d have made an excellent opera singer – if I hadn’t started smoking and ruined my excellent voice. But I’m not about to throw myself off any battlements because I’m not an opera singer. I just wasn’t invested enough in becoming Maria Callas or Renata Tebaldi to stop myself from starting to smoke. I have few regrets in life, which is just as well since regret is rather like jealousy or guilt, an utterly useless emotion that takes up too much time and really has no resolution in the end.
And so, I know what it feels like to give something up and not once think that I’d made the wrong decision. And so it has been with chemo.
I gave up chemo at the end of November – my last session was November 29, the day before my 55th birthday. And I have not had a single moment of regret. Not one. All I feel is complete and utter relief. I feel like I’ve woken up from a horrific nightmare, in which demons and wraiths were ripping my body asunder, in which faceless people were holding me down under water and I couldn’t breathe. In which poison was being pumped into me as I lay strapped down in the laboratory of a mad scientist… Oh, wait. That wasn’t a nightmare. That was real. It actually happened! Six times in three and a half months last year. Aaaaaaaagh!
Actually, I do have one regret – and it’s a big one: it’s that I started chemo in the first place.
Someone asked me recently when my next check up was, and what my doctor thought of my decision to stop.
It was a good question, one I had not thought about until that very moment.
The truth of the matter (after thinking about it for about a minute) is that I don’t really care what any doctor has to say and I’m never going for a check up. Ever.
I don’t want to know if the cancer comes back (I seriously hope it doesn’t) because if I did know, what difference would it make? I’ve made the decision never to subject myself to allopathic cancer treatment ever again. So how would it help me to know?
In fact, if I knew then what I know now…
If I was sitting on my couch watching Game of Thrones on that Saturday afternoon, June 15th, and they unexpectedly killed off Catelyn Stark, and I lifted my hand to my mouth in surprised horror, and brushed against my right breast in such a way that I felt the lump… I would have noted the lump, and then just gotten on with my life.
I would not have had the lump checked, not have gone for a mammogram, not have had a biopsy, not have had a double mastectomy and certainly not have entered into an agreement to follow up this process with barbaric, debilitating – cruel – chemo therapy.
We will (might?) come to regret the way we live our 21st century lives at some future point. Everything we do now seems to happen in real time. Send someone an email, and an immediate response is expected. Don’t respond quickly and you can expect a text message or a follow up email. “Did you get my email? To reiterate…”
Or you might be hunted down on FaceBook, or on LinkedIn or one of the other social networking platforms. If there is silence beyond our comfort point, those of us who live in Johannesburg might call the cops, or start phoning friends. “Heard from X? I’ve left several messages and still no word.”
It’s preposterous. Any attempt at “going quiet” is a near impossibility. If you want to drop off the grid these days, you have to do “an Algernon”. (In Shaw’s delightful farce, The Importance of Being Ernest, Algernon invented a needy uncle Bunbury with whom he had to spend extended periods of time. This subterfuge was intended to give him time to himself; a reason to refuse social engagements and an excuse so he never had to explain his whereabouts to anyone).
We live our lives in real time leaving almost no room for rumination, for deep consideration, for meditation.
It’s all instant, now, this minute, this second for us 21st century-ers. Sure, we’re not our ancestors and their daily dreary tasks have been mechanised. Thank goodness that we do not have to manually till the soil, milk the cow, churn the butter, polish the floor on hands and knees, wash clothes. We’ve saved ourselves heaps of time to do other things, less physically demanding things. You’d think that we would have more time on our hands, to spend on intellectual pursuits like reading or playing chess. But no, we’re too busy watching reality television or living our lives in real time.
I sometimes long for the days when you could board the UnionCastle in Cape Town and wend your leisurely way across the seas to Southampton. I long for letter writing where you are forced to wait for an answer sent from near, or far, a hand written letter in which the writer uses real words, not acronyms (LOL, WTF, OMG). I long for a world where people read books, real books not e-readers or kindles. Where universally accepted reference points like Greek mythology, or Shakespeare or the Bible are recognised and understood. Where the pace of things slows to a delicious halt at the end of the day, where the family sits around a dinner table instead of in front of the television. Where holidays are spent playing scrabble instead of every family member speaking to someone not in the room on their PDA or I-Pad.
We all seem to be obsessed with having a long life – even though the lives we are living right now are filled with the most mundane trivial minutiae.
Which is why, if I could go back to June 15, 2013, the day I found the lump in my right breast, I would shrug my shoulders and move right along. I would do nothing about it.
Why? Because we are all so intent on living longer that we forget to live now, being present and in the moment. I am guilty of this too… or at least I was until this bloody awful thing happened to me.
The message machine – that is the media, and magazines, and talk shows, and radio and television and personal accounts and blogs and twitter and FaceBook and the Pink Ribbon brigade – has put the word out: CHECK FOR BREAST CANCER: Have a mammogram every year after 40. Check yourself for lumps. Detect the cancer early and you might save your life. All of which is true. Also, medical techniques have improved enough to make early detection fairly simple.
All well and good. But then, once the cancer is detected, the machine goes into overdrive and you get onto the cancer carousel with all the speed of modern technology.
There’s little time to think, to weigh up options, to ponder outcomes or deliberate on best practice. Its go, go, go. Get it out. Get it out. Get that blasted tumour out.
Then blast the body, still recovering from major surgery, with huge doses of toxic sludge, delivered through veins, veins that will turn black, as will your nails. Your hair will fall out. Your mouth will get sores. Your mouth lining will come away leaving you with horrid dry mouth. Blah Blah Blah Blah
My last chemo session – a treatment of Taxol and Herceptin – cost R66 000. One treatment. R66 000.
There’s something about Christmas and New Year that brings on a state of intense self analysis. It all kicks off with my birthday at the end of November so I have a month of deep introspection: Where am I in my life plan? Where should I be? Have I done the best I could? Where am I going? What do I need to do to ensure that I am happy, safe, peaceful, not-lonely, healthy.
This year, I suspended my personal examination, or at least I put it on hold for a while. Instead I went back to Port Elizabeth, where the best healers in the land live. (Apparently it’s PE’s ley lines – they provide perfect spiritual alignment apparently – that attracts such excellent healers to this city.) Celeste Laubscher, who has a halo of white light around her, is someone whose healing ability I trust. Implicitly. When I lived in Port Elizabeth, I had a weekly appointment with her: Friday morning, 8am. She’s more than a therapeutic reflexologist – as her card says. She’s a medical intuitive. So when she said, as I sat with my feet in her reflexology boots, that she was delighted to see I was doing so well, I beamed. “You have a strong back,” she said. I wondered why that was significant. “Because if you have a strong back, you can cope with anything.” Celeste ordered a metal detox. And suggested a series of lymph drainage massages to get me back to full strength.
And a mantra: I forgive and release the past. I forgive and release the past. To be said throughout the day.
And that is what I am doing right now. I repeat the mantra aloud and in my head often throughout the day. I have a weekly lymph drainage session with Linda Stiglingh, a wonderful massage therapist who I have gone to twice a month since I was 25. Lymph drainage massage hurts. But it is very effective in getting the lymphs to start doing their job again (the lymphatic system is basically a channel that carries a clear or whitish fluid called the lymph which helps clear the tissues of organisms and toxins capable of causing infection). My darling friend Sahm still gives me healing Reiki. I have reflexology as often as I can.
But, most importantly, the only sop I have made to cancer is to radically change my diet. I have cut out every single carbohydrate. (Bar milk in coffee)
There are a host of disparate views and ideas and studies about cancer and how to treat it on the internet. It is utterly confusing. But, there is one thing that everyone who has studied cancer or put forth a theory on how cancer cells grow and live are agreed on: Sugar feeds cancer. There are a host of studies that suggest that the best cure for cancer is removing sugar in all its devious forms (all those oses – dextrose, fructose, sucrose, lactose, glucose – and corn syrup, corn starch, honey, nectar etc). from the diet. That includes starchy vegetables, and fruit.
And so I am on a high fat, protein rich diet (with green and leafy vegetables).
I’m also making a list of things to do to live life as fully as possible.
If you have suggestions for I can live a fuller life, how I could introduce some fun into my life, email me: email@example.com
Nelson Mandela died on Thursday, December 5, at ten to nine in the evening.
On the previous Thursday, November 28 – the day before my last chemo session – I had this dream.
I’m sitting in a waiting room, waiting to be called into the oncology ward, to be hooked up to a Taxol drip. (Taxol: a compound, originally obtained from the bark of the Pacific yew tree, which has been found to inhibit the growth of certain cancers.)
Only it’s not a hospital waiting room that I seem to be sitting in but an office. There are women around me, none of them familiar. And then I see him, Madiba, sitting in a corner all on is own, and I think to myself: I wonder why nobody is talking to him, why he’s by himself. And then the dream shifts and we are all sitting around a table, waiting… And I realise that we’re all dead and yes we’re waiting, but not for chemo, and in my dream I hear myself say to no-one in particular: So… Me and Madiba are going to the angels together.
And a week later, half of that dream came true. And though I’d known for ages that the end was near for him, news of his death still came as a sad surprise and left me feeling curiously bereft. And a little intrigued by my dream and what it meant for me. Was it prophetic? Am I going to die? Not that any of it matters. By the time Madiba died, I’d already made my decision to quit chemo.
Looking back on it, there was something supernatural about how it happened, something quite mystical.
Saturday was my birthday and a group of dear old friends traipsed through my apartment bearing good will and gifts.
I’d had chemo the day before, so by early evening on Saturday I was so tired that putting myself to bed was a chore.
Sunday was spent in a stupor in front of the television.
On Sunday night I went to bed at 10 and fell asleep immediately. It’s my gift, really, the ability to sleep. I have always been able to. Before menopause, and night time sweats and overheating and waking to wee, I would sleep uninterrupted for eight hours and then wake refreshed. Even now, there’s no mystery about it. I climb into my bed and am asleep within minutes. I might wake in the night to wee or curse out loud at a hot flash, but I fall right back to sleep. For me, torture is not being able to sleep. Lying awake, tossing and turning, desperate for oblivion makes me more anxious than it should. Because it is treading on such foreign ground, I don’t quite know what to do when sleep eludes me. Should I get up and make a cup of tea? Should I watch the telly until my eyelids droop? Zone into Face Book? Faced with possibility, I always choose to lie there in the dark, and wait it out. I used to be able, on the rare occasion I couldn’t sleep, to meditate. But since the word Cancer entered my world, talking to God, chatting with the angels; attempting to meditate in any way has been all but impossible. Prayer needs contemplative space, internal silence. I have not been able to focus for months.
But on Sunday night, or very early Monday morning – 1am to be precise – when my eyes flew open, there was a clarity and a sharpness that surprised me.
I lay there in the dark, unafraid, calm, my breathing slow and measured, my eyes closed comfortably in the inky blackness of my room.
This was not the space inhabited between sleep and wakefulness, that almost dream state with whispers of consciousness.
I was awake. In the middle of the night. And happy to be so. Without a shred of anxiety.
And, more importantly, I was in a hyper focused state, able to concentrate without distraction. Behind my closed eyelids, random images flashed as though onto a movie screen. A green field edged with meadow flowers in a myriad of colours. A dancing streak of pink that morphed into a stripe of violet, then a slash of green.
There was no sound other than the quiet ticking of my heart and the gentle rrrsssshhh of blood coursing through my veins.
There were long pauses between the image changes, as though my brain were on a timer. On and on the slide show went. A Hawaiian Hula dancer in a grass skirt nodding and swaying on a dashboard. A swatch of shweshwe cloth, drab brown, patterned with a white overlay. A choir, voices raised in song, standing on a revolving platform on a mountain side
And then the images stopped, like a projector run out of film, projecting only bright white light onto the wall where once pictures appeared. I didn’t flinch. But in that living, breathing flurry of light, I knew I wanted to stop the chemo. Nine more months of this half life would make me crazy.
Death would be infinitely preferable to this inexorable descent into purgatory. To expand on the Catholic metaphor, I was certain that I did not want this temporary punishment, and I was unsure if the process included – as it promised – a state of purification; not of my soul but of my body. I remembered being prepared for my first holy communion by an overzealous young nun – who tugged endlessly at the coif of her habit – and who was determined to let us know that purgatory was not a place we wanted to be. It’s an in-between place, Sister Annunciata said, for those who die with non mortal sins (mortal sinners go straight to hell). But it’s an uncomfortable place, purgatory, she told six year old me. And to prove her point, she brought along Renaissance paintings by Italian artists influenced by Dante - images of dirty, broken naked bodies piled on top of each other in filth and mud, writhing in agony as individual souls tried to claw their way out of the heaving mess. In some paintings, the torture was intensified because heaven was within view: clean heaven, sweet smelling heaven, happy heaven. And then of course there were the purifying fires – flames engulfing the souls as they paid for their non mortal sins, souls writhing in agony.
Chemo therapy was my purgatory.
I wonder why its called therapy? Therapy literally means curing, healing. Wikipedia says it is the attempted remediation of a health problem. Really? Chemo curing or healing? One friend who’s been through the process emerged deaf in his left ear. Another friend has never regained sensation in her feet and walks like a duck to compensate for that. Yet another friend’s right arm swells up when she flies – damaged lymph glands. She says it sometimes takes six weeks for the swelling to go down. I’ve heard that chemo brain takes between two and three years to recover from – if you get your ability to think clearly back again! The list is endless. Nobody walks away from chemo unscathed. It leaves its mark in some form or another. Like purgatory, the road to redemption is paved with pain and scarring.
My decision to end chemo did not come out of nowhere. I’ve been chronically ill before, as a child with asthma.
It usually started with a wheeze that quickly morphed into short shallow breaths and then tortured gasps as the little me struggled to get air in my lungs. The rasping sound was almost more frightening than the slate grey colour that spread from my lips to my cheeks, starved as I was of oxygen in the early stages of an asthma attack. I’d had them from when I was very little, or so my mother said. But I only remember the mild panic of not being able to take air in at age five; the limpness of my body as I lay there, panting; my eyes round, my forehead damp. I would like to say that my mother was calm, that she took charge and gently coaxed the little me into a calm place, that she encouraged my lungs to open by being gentle and serene, by willing me to breathe. But that would be anything but the truth. Mama lost it in a crisis. She panicked so completely – her body tense; her voice high pitched – that she was the opposite of being the grown up in charge. I remember being clutched so hard that if I were not having an asthma attack I would have found it hard to breathe. While she panicked, she wept copious tears, her body tense and wracked with sobs.
My dad kept a healthy distance from any illness or physical suffering that his children were forced to endure. His way of dealing with my asthma attacks was to get into his car and head off to the green grocer where he would select the juciest, lushest black grapes (all with seeds back then). That was his way of acknowledging my blocked airways: Here, have a grape. And so it became a family tradition that when I was sick – not Anton or Antonette or Shaun, only me – grapes were sought across the length and breadth of the land. Granny and Grandpa had a vine in their orchard which produced the smallest sweetest black grapes, like raisons. They were made to deliver bunches to 7 Buckingham. The Singh’s across the river had a rickety old trellis trailing large spider-web infested golden grapes that – should they be allowed to dry – would have turned into sultanas they were so sugary. Uncle Amod, the green grocer, worked wonders when grapes were out of season, and to this day I will never know where the brown paper bags filled with grapes of every description came from. My daddy called them Charmain’s grapes. A little like Lorenzo’s Oil, they were my elixir, my rejuvenating medicine. Sometimes they were plucked from their stems, washed until the milky white coating on their surface was thoroughly gone, and put into a glass bowl. There I sat, picking up a grape with my little fingers and biting into it. Sticky juice ran down my chin. It’s hard to be the child in the family with an affliction, the one where the parents are always enforcing an extra caution rule. “Don’t over excite Charmain. We don’t want to bring on an attack,” was a constant refrain. I was “delicate” and so Anton stopped me from playing gutter cricket with the other kids in the neighbourhood. I remember one time, in Estcourt, we – all four – built a go-cart out of an old crate. We used wheels from an old doll’s pram attached to the under carriage with bits of twine. The guttering outside our house was wide, a concrete culvert that ran from the edge of the sidewalk to the tarred surface of the road. To test our nifty contraption we needed human cargo and, since she was the littlest at four, Antonette was our guinea pig. The gutter sloped down a gentle hill, and down this slope we pushed the home made cart, faster and faster until it developed a life of its own, the momentum growing as it sped towards the open manhole. Into the gaping hole the cart went, throwing Antonette onto a jagged edge in the concrete, splitting open her little head. Blood spurted from the wound. We were terrified, of our mother’s reaction. “Don’t tell mum,” we begged the bleeding four year old as Anton tried to staunch the blood flow with his grubby tee shirt. Antonette needed many stitches and we were punished by our very angry mother. But, Oh, how wonderful it felt to be the one who didn’t have to be rushed to the hospital or to the doctor, the normal one. Of course I had to take a hit from my asthma pump to deal with the euphoria. But the thrill of it!
The story in my family is that I grew out of my asthma.
And now I will grow out of cancer.
I’ve raised this before: At what cost is life worth living? How far am I prepared to go to prolong my life? To answer that, I have to list the things that I know about myself.
If anything, I have felt nothing but a huge sense of relief since I made the decision.
And that old adage: when the student is ready, the teacher will come seems to be coming true. People are offering alternatives, some of which seem to make sense. But that’s for another time. For now, I believe with every fibre in my being that the cancer is gone. The tumour has been cut out and I will – once the poison has worked itself out of my system – be in rude good health once more.
I’m exploring new – easily doable – alternate options. I’ll let you know when I do what they are.
I’m looking at my diary, at the last time I found the energy to write anything. Here is what I wrote…
It’s a week today since the fourth bout of chemo, the last of the dreaded red devils. I woke this morning with every inch of flesh aching. Black tracks trail across my skin, as if left by a snail dipped in ink. My veins and blood vessels revolting against the venom coursing through them, the gore within spiked with the bane that is the bane of me. Thin, sticky mucus drips from my nose in an incessant stream, like brain fluid pouring from me, attempting to flee the toxic pathways that lead all the way to my cerebral cortex. Nausea lurks at the back of my throat, kept at bay by manic swallowing and attempts at deep breaths which are really half sobs. My brain is throbbing and if I were to rephrase John Keats I would say: my head aches, and a drowsy numbness pains my sense, as though of hemlock I had drunk… Wait. I have drunk hemlock! Nothing as though about it. I can hear it: my heart beats – ba boom, ba boom, ba boom – too fast, a little out of rhythm like I lost the beat and even though I’m trying to get it back, get back to metronome regularity, I can’t. It will not be tricked out of the panic zone it has retreated to.
Its morning. Another morning. And I am weary before I’ve put my feet on the floor. Before I’ve lifted my head off the dent in my pillow. I go to the window and gargantuan effort is needed to lift the Roman blind, to let in the day.
Early morning Johannesburg, under a sea of blue sky hovering over a sea of every shade of purple – mauve, lilac, violet, lavender, damson, grape, heather, magenta… Jacaranda season, usually my favourite time of the year.
November has always been my special month, the month of my birth, the month of my best memories.
All through my life – every birthday - my mama would tell me the story of my birth, a tale so personal, so mine that it is seared into the part of my brain that is associated with smiling and just thinking of it can usually lower my blood pressure and make my shoulders drop.
It’s Sunday, November 30, 1958. My pregnant mama wakes at dawn, feeds two year old Anton his porridge and sets him to play with his wooden train on the carpet in the orange sun filter curtained lounge. She eases her belly attached to an aching back into the bath, as she does every morning, and hums a happy tune.
Then she lays out her turquoise cotton dress with its honeycomb smock top that billows out under her breasts, to make room for the entombed me. Her shoes are black patent leather, pointy. Her church gloves are abandoned for the summer heat and the breathy climb that lies ahead, up the steep slope of the hill at the top of which sits Ladysmith’s Catholic Church. My parents, carless in those early years of their marriage, walked the two or three – maybe even four or five – kilometers to mass every Sunday morning without fail.
It’s early still, the sun not yet overhead, but already my mother has beads of sweat on her upper lip. She stands at her bedroom window in the synthetic white slip she always wore under her clothes, looking out at her newly planted rose garden from behind the lace curtain. There were always lace curtains, even though our house was protected from public view by a Snow White-like thorny hedge, high and wide, beautiful and dangerous, impenetrable. Lace curtains to keep anyone seeing in. It was always like that. The Naidoos terrified of scrutiny. Would we pass muster behind our high hedge and our lace curtains? There mama stood, behind floor length lace, hoping for the slightest of breezes to cool her swollen body. And then the first twinge came and mama screamed for my dad who was putting on his brown woollen suit.
He had one shoe on and one shoe off when my mother screamed, and in his panic he slipped on a black loafer though his other foot was covered with a brown brogue – worn only on Sundays with the worsted double breaster.
Dad went into his controlled panic/organised mode: call the midwife, Sister Carmichael. Check. Call the in-laws, (mama’s mum and dad, my granny and grandpa, and mum’s sister, my Aunty Barbara). Check. They lived in Washbank, a tiny hamlet a good 40 minute drive away and would screech into the driveway in Grandpa’s Dodge, just minutes before I made a loud entry into the world.
Sister Carmichael arrived in her beige Morris Minor, her nurse’s cap folded like the bow of a ship on her hair – caught at the back, as it was, in a neat chignon that sat at the nape of her neck.
Sister Carmichael frightened my father. From the first, her formidable efficiency and crisp no-nonsense manner made him feel clumsy and tongue tied and useless, none of the things that he usually was. A blithering idiot was how he described himself around her. If she sensed his fear and exploited it, we will never know. But she did treat him, or so mum thought, with disdain.
That morning, he took her instructions on board, hurtling to and fro, making sure there was boiling water and a cup of tea for Sister C, and cubes of ice for mama, and an ice lolly for Anton, though it was barely 9am and the porridge was still heavy in his teeny tummy.
And then, as the church bells began to chime – one, two, three, four, five, six, seven, eight, nine, TEN… out I popped with a howl of rage at being plucked from the comfort of the womb, at being grabbed by my feet by a woman who despised my father. At 10 o’clock on Sunday morning, Charmain Alexandra Naidoo arrived screaming into the world that was 1958.
It was the year NASA was formed, the year Bobby Fischer won the US chess championship, and Elvis Presley joined the army.
The actress Jamie Lee Curtis had been born eight days before and Louise Ciccone – who would become Madonna – had beaten us both to it by arriving in the world on August 16th. Did I arrive with the predisposition for cancer? For alcoholism? For food addiction? Did I know then that mine would be a life as fraught with challenges as it was filled with joy?
My father seemed to love me, and beamed despite Sister Carmichael’s disapproval of him, or so it is said. The other person who terrified my father was my grandpa. Dad called him Sir, often standing to attention when he did so. I’m not surprised that grandpa scared dad. My Grandpa was a stern, forbidding man, who believed in paternalistic power. He ran the entire family with an iron fist, with such firm autocratic control that I often wonder if it was the cause of my grandmother’s addiction to food. I don’t know what she weighed, but in my mother’s wedding pictures, she looks like she might weigh over 200kgs.
I once asked mama if her parents were happily married, and she brushed it off with her usual: “What a silly question. Of course they were happy,” like I’d suggested they were aliens from Mars, so absurd was my question.
When I asked if Granny’s extreme weight was, perhaps, caused by my authoritarian grandfather’s often menacing wrath, mama reacted like I’d accused my grandmother of being a prostitute, or even worse, a protestant. Glandular problems and a sluggish thyroid were proffered as the possible reason for grandma’s bulk. There was no mention of cream buns or pots of phutu pap covered with twice cooked double beans, smothered in real farm butter. Not one word about a sedentary life lived largely in a giant chair on the veranda of the deep wrap around stoep that shaded my grandparents Washbank home. She even had a piccanin fetch her grapes from the vine that straddled the fence of the orchard. There were always small snot nosed children running around the yard, their mothers and grandmothers seated on the broad wooden bench next to my granny’s big chair. These rural women came to the tiny hamlet to sell their goods – mielies grown in dusty back yards, woven baskets, clumsily beaded antimacassars to keep men’s brilliantined heads from leaving their mark on high backed couches. They’d always come to the big house first. Not that granny ever bought anything. But she offered cold water on hot days, perhaps a cup of tea and a fresh scone if the housemaid had baked that morning. Mostly she listened to village gossip, helped women talk through their problems, and granny – whose Zulu was quick and fluent, some say better than her English – would give advice, hand out a pinch of snuff or a fistful of grapes or lemons from her tree. Her own mielies, tended by a man who lived in one of the warren of rooms on the grounds of the large property, would often feed the women who’d walked miles to get to town. And their bare footed children in hand me down clothes, often mine, or Anton, Shaun or Antonette’s, had free reign of the yard and the orchard and the front lawn shaded by a giant eucalyptus tree. There they played with rusty tyre inners which they rolled along with a stiff piece of wire.
And all of this veranda activity was overseen by my gran, her pillowy body ensconced in the large rattan chair with its overstuffed cushions, the chair groaning under her considerable weight as she moved to fan herself, or hold an astonishingly dainty hand for such a gargantuan woman to her mouth as she laughed. Sadly, I inherited Granny’s fat gene and fear of physical exertion, though doctors (and I’ve been to a few) have ruled out a dicky thyroid. They have mentioned things like processed carbs and a decided lack of exercise as the cause of my weight.
Anyway, back to the day of my birth, and to my dad wearing one brown shoe and one black, wearing a stiflingly hot woollen pair of trousers and a pinstripe cotton button-down shirt. My dad, whose deference to my grandfather has grown into family lore, whose enormous respect for the surly man was repaid in bags of rice and bags of beans that mysteriously appeared in our pantry after grandpa’s visits.
I always found grandpa a little stiff, a bit uncomfortable but fiercely loyal. Like the time Mr Pillay, the principal of my primary school, threatened the six year old me with a punishment that was so awful (he would lock me in a classroom all night and I’d be alone in the dark with monsters lurking outside) that I had nightmares for days and wet my bed and wouldn’t go back to class no matter what coaxing… When mama told grandpa, he drove to the school, broke the aerial off his Dodge and had to be restrained by four grown men when he threatened to thrash Mr Pillay. Looking back on it now, it was a truly horrible thing to do to a six year old afraid of the dark. I wish the men had let grandpa land a punch, or at least let him brandish his aerial (apparently taken from him) a little more menacingly.
On that Sunday, granny and grandpa cooed and clucked over the gorgeous me. Gran gave mama a special rose that was still producing deep red blooms with velvety pile leaves when she died and the house was sold.
That is the story of my birth, as told to me by my mother – every birthday until my 41st birthday. She died 25 days before my 42nd birthday. Of a heart attack. But that is another story. Her story.
I wonder what she’d have made of me being diagnosed with cancer. She’d have panicked, no doubt about that. There’d have been hysteria, and much weeping and gnashing of teeth and her saying she wished she could swop places with me. And in the end it would be all about her and how by getting cancer I had caused her pain and upset and hurt her. How could I? And then I’d feel bad about having cancer because my having cancer made my mother unhappy. And how could I do this to my mother? How could I?
I’ve been sad these last days. There’s this line in Anton Chekhov’s The Seagull (where all the characters are perpetually dissatisfied with their lives) in which Masha – who always wears black and is asked why – says: “I am in mourning for my life.”
I sort of feel like that. I am sad for me. I miss my nipples – the endings of my breasts which had feeling and which stood up in the cold or when they flirted with the silk of my dressing gown. I miss my hair, which could be brushed, plaited, ghd’d, Brazilianed, curled, loved and loathed. I miss afternoons spent awake. I miss me.
It’s November and early morning and I am standing at my bedroom window surveying the scene unfolding before me; the tumble of purple and green mixed in with rooftop slate and tarmac grey, I gaze out into the crisp early morning and hear the distant hum of traffic from the highway, the sound of doormen clocking out, of maids clocking in, and my heart is heavy.
My breathing is shallow and fast as I press my head against the cool of the pane. And every nerve, neuron and cell; every fibrous tissue and fragment of cartilage is screaming ENOUGH.
I have not stripped naked in front of a mirror since before cancer, so I have not seen the butchery in its entirety. Well, not against the backdrop of the rest of the carnage.
Today is the day. I shut my eyes tightly and peel off the layers. It’s like watching a car wreck, I am utterly appalled and yet I can’t look away.
And there they are, my lacerated breasts. Raggedy Anne breasts, stitched together. Hard mounds covered by slashed and scraped skin. When I was little I had a teddy bear, a Steiff bear who came all the way from Hamleys in London to live at 7 Buckingham Street. He was called Bear, hardly an original name, poor Bear, but he did have a fairly predictable ending. True to his nature, and completely in keeping with his DNA default position, our fox terrier, Timmy, took on Bear, ripped the stuffing out of him. I remember nanny Gloria comforting me with a Zulu song while she stitched bear back together again. He’d lost an eye, and his mauling had left a furless swathe across his torso. But nanny Gloria, using thick black thread (jarring against his original golden fur), sewed him back together again. The eye was gone, so a giant cross stitch held the stuffing in over the eye. Bear of old – a thing of acceptability – was gone. New Bear was a rough and rugged version, a sailor with an eye-patch and a peg leg version.
My left breast has a round flap where the nipple used to be and a T-shaped scar under and around. My right breast looks like Bear’s sewed to eye. The surgeon tried to save the nipple, it died, was removed in a second surgery and the flap sewn together. On the side of my right breast, where the cancer lump was, is another lump – of scar tissue I’m told. It has a permanent blue bruise.
My breasts are hard. They feel like imposters taken up residence on my chest. They do not feel a part of me. I touch them and they are foreign, strange objects living inside me, alien invaders. Mostly, the area that used to be my breasts is numb. Or numb and sore in the same space. If that sounds odd, it is. I can feel the prosthetics. Occasionally, a very sharp twinge passes through my flesh, through where my nipple used to be. Apparently nerve endings beginning to dance again. A good sign, I am told. Though, three months after the operation, I have still no affection for my new breasts. They hurt, or are numb. They’re too high. They’re too small for my large frame. I look like a sumo wrestler, with oversized arms. I now have underarm fat and bra flop-over fat and back fat. Obviously I had all of that before, only with my large breasts I never really got to see any of it. I hate my new torso shape. I’m sort of square, flat, shapeless. And these new breasts, which I have dreamt of for so long, which I have coveted since I was a teenager with a double D cup size, are not what I imagined they would be. Sleep is all but impossible on my side.
And more importantly, I want my nipples back, the chance to feel my breasts, even my droopy breasts with their lost elasticity. At least I could feel them. Then my friend Blaise called me from Bangkok to say Ha Ha. You see, I turn 55 on November 30, and the Thai word for five is Ha. So I’m not sure if the Gods are having a laugh at my expense – Ha Ha – or perhaps the jokes on me.
I’m turning 55 and I’m wondering how much longer I want to live. Five years? Ten? Why do I need more time? I’ve had an astonishing life, almost all of it on The Sunday Times – a life filled with adventure and fun. The Sunday Times has sent me all over the world – to London (after Thatcher), to New York after it had been cleaned up by Rudi Giuliani. This will to live: can it not be compared to being greedy? To wanting more?
The four supposedly bad sessions of the red devils is over and I have begun the weekly Taxol and Herceptin cocktail. It’ll be a breeze after the red devils, I was told. But chemo is chemo is chemo… No such thing as good chemo I’m afraid. I am as tired as I ever was, and I’ve swopped one set of side effects for another.
So, here’s the thing: I want to stop. I want to get off the cancer carousel. I want to start to live again, to plan to get on with things.
I feel like everyone I know lives in WellLand and I’m stuck all on my own here in Cancerville. And it’s going on and on and on, and there’s no guarantee that the burning sensation in my feet which makes walking uncomfortable will ever go away, or the ache in my joints – especially at night – that wake me from my sleep.
Actually, it’s none of that. I can cope with the discomfort of it all. It’s the endlessness of it. I have cancer fatigue and I’m not even half way through the treatment. I can feel my legion of supporters moving on, or tuning in with less enthusiasm than they did before. Of course they still care, but there are other causes, other sick people, other life affirming things to do.
I want to stop the treatment. I want things to go back to normal. I want to stop. I want to stop. I want to stop. Should I?
I am trapped in a Magritte canvas… In The Blank Signature, perhaps, where nothing is as it should be. Woman, forest, horse, melding into one. And not. Witty and frightening in the same frame. Or, maybe, Golconda, where it’s raining men (no, not of The Weather Girl variety, though maybe it is?). Faceless bowler hatted men who all look like George Smiley in his trench coat, hunched up under the weather, falling from a cerulean sky onto red rooftops over close-curtained terrace houses.
They painted the subconscious, those surrealists. They captured those parts of our dream world that we visit in our sleep. They drew images from that nether space between sleep and wakefulness, often places we prefer not to visit, places we’d rather were hidden. They exposed our fears, and our desires. They depicted the dream and the nightmare, where very little makes sense. They took everyday objects (Dali, a clock; Max Ernst, a walnut; Magritte, a bowler hat) and turned them into things of memory, of menace – as they might be in a dream state.
And I think to myself…. I am in the grip of a dream, where nothing – and everything – is real. Where the impossible has happened, is happening. I am allergic to myself, to the smell of me, to the taste of me. I breathe out and the stench of something man-made, unclean, chemical is vapour before me. And the very smell of it churns my already unsettled stomach and I retch and retch until a thin stream of bile comes up and out of me, sometimes the colour of the red of the chemo cocktail that has gone into me. And I am repulsed: by the very act of vomiting, and by the smell that won’t leave me, not now – nearly two weeks after the last treatment.
And when I lie, listless and slack eyed on my couch, contemplating nothing, gazing into the middle distance unfocused and idle, I am reminded again of the surrealists, of their cleverness at distorting how we see the world.
If I were to draw myself, I would draw two of me. One looking at the other, but through some distancing object like a telescope dripping blood, or a hole in a wall interspaced by an ocean. The one being looked at would have arms where legs should be, the skin blackened, the pores open and spewing gore. The one looking would be aloof, contemptuous. The one being looked at would be resigned, embarrassed.
I want to change the picture in my head. I want the one doing the looking to be compassionate (if detached) rather than scornful. The one looking through the telescope has to find a way to connect with the one being looked at.
And so this sets me on the path of discovery and brings to mind something my mama used to say.
I don’t often quote my mama, Norma. She liked the cliché. She based her wisdom on all things biblical, invoking the wrath of Jesus often and vociferously. She lived her small life in small, meted out portions. That’s not to say that I didn’t love her. I just don’t quote her because she rarely had anything wise to say.
Except for this platitude (that I have never found use for until recently): Always find the blessing in your current situation, she’d say. Yeah, right!
Like when I was made vitrix ludorum at the end of my matric year, and it so incensed my classmates that they sent me to Coventry, disinvited me from my matric dance and broke my 16-year-old heart. (I can still see the apricot trilobal dress with its faux flower pinned on at breast dip hanging forlornly in my bedroom cupboard; the dress I loved and never got to wear.)
You see, my father was the headmaster of my high school, and my fellow matrics thought that the teachers had voted for me to curry favour with my dad. Or something.
Oh darling, mama said to me as she cradled my weeping head in her lap, life is hard. Just find the blessing in the current situation. I never have. Even now, when I think of that horrible time, I get a lump in my throat. Even now I am saddened by the cruelty of my so called friends. Even now I forgive them reluctantly, only because I know that not letting go hurts me more than them. Collectively.
Or when I played Shen Teh in Brecht’s The Good Woman of Schezwan, and the play tanked and I got the worst reviews… and it didn’t matter that it was 1976 and I was in my first year of drama at the university of Westville in Durban, and all around me people were striking and rioting and toyi-toyi-ing and making a stand against apartheid and on June 16 Hector Pieterson’s young life ended in the Soweto uprising…And I was so bad on stage, it was all I could think about. There I was, playing the part of the prostitute Shen Teh, so torn between morality and kindness that she has to create an alter ego… I was so bad on stage that mama, who loved me unconditionally and without criticism said to me – when the reviews came out: The blessing in this situation is that you now know that you’re no good at being an actress. Actually, darling, you’re really rather bad at it. The blessing (which will reveal itself to you at some later stage) is that you don’t have to waste years going down that path, attempting something that you’re so terrible at. There! Feel better?
I felt so not-better that if I’d been political, I’d have joined an underground movement and headed for one of the training camps in Moscow or Angola, or even Swaziland – though that wouldn’t have been far enough away from the bad reviews, from mama. And I never did get to find the blessing in being ridiculed for my performance of Shen Teh, which made me change the direction of my life, give up my dream to be an actress and settle for a life of words instead. A life diminished, a life stunted too soon. My young life forced into an alternate state of being, something that narrowed my options and made me see myself as a bit of a failure. I couldn’t act. And so I hated myself just a little more. Fat thighs, a size 14 when everyone around me was a size 0. Add “can’t act” to the equation = self loathing. My self esteem in the gutter, 16 turned into 20 into adulthood…
And then I heard that I have cancer. Well that didn’t exactly make me feel special. The universe showing up my weaknesses again. Physical. Again! Not flabby thighs or pot belly this time. Actual killer lump in breast. Finding the blessing was not top of my list.
I have to go back a bit to make sense of what I am about to say. On January, 29, 2007, I checked into rehab. I’d been drinking a bottle of Vodka a day and it was time to stop. I stopped. January 29 next year will mark seven sober years; I consider it my greatest achievement. But, when I stopped drinking, I also lost a large part of who I used to be. Mostly, it was a good thing. The old me was a mean, sharp tongued drunk. The old me was careless of other people’s feelings, of their dignity. The old me gossiped for the benefit of the anecdote. The actual content of the story – truth or lie – mattered less than the witty telling of a tale to a willing audience who let me know that I was being cruel even while they tittered behind their hands. Parties were easy for me, oiled (as I always was) for social interaction by a few stiff party starters in a bottle.
And then I stopped drinking and my life began to shrink. At first I was uncomfortable at parties. Without the grease from the party starters, my party joints creaked and I felt clunky and unwieldy in social settings. Self conscious and gauche, and it never got better as the night wore on. Remember I was going to be sober all the way through so no relief there.
I got lonelier and lonelier. And so I thought a change of scene would do it. Like the story teller sings of Pippin in Simple Joys:
So he ran from all the deeds he’d done, he ran from
Things he’d just begun
He ran from himself, now that’s mighty far to run
Out into the country where he played as a boy
He knew he had to find him some simple joys
He wanted someplace warm and green
We all could use a change of scene
And so I begged my boss to let me come home to Johannesburg (I’d been gone eight years) because I was lonely in PE. I forgot that you take yourself wherever you go.
Looking back on it now, it had nothing to do with PE and everything to do with me. I’d made my life small, so being in Joburg didn’t help the situation. Whereas I’d had a small PE life, I now had a small Joburg life.
I chose to buy an apartment that is enormous, but which – essentially – only has one bedroom, and no doors so that it really is best suited to housing one person. I think my subconscious was insistent on making it as hard as possible for anyone to come to stay. Comfortably. I introduced this ridiculous rule: I was in bed by 9pm, so going out to dinner was a no-no. I was up at 5am, when the world is still asleep. Whereas the old me used to cook, and have lovely dinner parties, I literally didn’t turn my stove on for three years. I shied away from having friends over. My flat became my hermit cave. I got further and further away from everyone else, and from myself. After a while, all but my dearest friends stopped asking me round. I fell off people’s dinner party lists, off their social gathering lists. I completely understood why. It’s annoying to have someone over and over to yours for dinner, with them never reciprocating.
I was so isolated – in my head and in reality – that I began to lose perspective. I’ve always been mildly dogged by gloomy periods – Churchill called his visits from the Black Dog – but now it moved into another space. Death and dying moved into the realm of the possible and I welcomed the thought of it. It would end my half life, my nothing life, my sad and lonely life. It actually became a source of relief, thinking of dying. I never once thought of killing myself. I’m too Catholic for that, too terrified that I would be banished to purgatory forever, never having the chance to get into heaven.
And then I got cancer and rejoined the human race. I want live. I want to celebrate life. I want to reconnect (am reconnecting) to people I love. I want to make a bucket list and fulfil all my dreams – dreams I thought I’d given up on a long time ago. I want to write a novel and see the northern lights and eat warm Mexican churros on a street in Guadalajara. I want to grow old and drive erratically down the main roads of Rome and Paris and read War and Peace and learn how to swim.
When I went public with my cancer (I think it was a subconscious life-saving thing to do) I didn’t realise what the impact would be. On me, mostly. I know now that I needed the support of everyone, old friends, new friends, family.
And I have had it: from friends I have not seen since university, old boyfriends, service providers I rely on to paint my toes or cut my hair, members of my family, stranger. People have responded with such warmth and love that I am blown away.
I am finding the blessing in my current situation. The blessing is that while my left ear has gone deaf, while my right eye is losing the ability to see, while I am vomiting over the toilet bowl… I have rejoined the human race. I love my life. I want to live. And I am eternally grateful.
I finally get it, Mama. If you look hard enough you will always find the blessing in the current situation!
So there I was, standing in my kitchen asking my housekeeper, Samkela, where the… erm, the thing…you know, the thing you put… er… those long pretty things, tall things?… you know… the thing?
Sam was perplexed. She did that thing she does when she thinks I’m completely off my head – chewed her bottom lip and tucked one foot behind a slender ankle; her head cocked at 90 degrees.
Were we playing? Cup? Washing machine? Fridge? Sam gamely trying to hold her end up in this ridiculous guessing game.
We settled on vase, only because I hauled one out of the cupboard and I handed it to her with a Harumph!
You will be happy to note that it’s not early onset Alzheimer’s. Or dementia.
Although, if truth be told, I have always had a bad memory, even when I was young and vital and wanted to remember things.
That said, I can (used to be able to) quote endless, useless, Shakespearean passages. I’m pretty good at remembering snippets of poems that I love. And I can remember numbers – phone numbers when you needed to and didn’t have a device that meant you didn’t need to, ie: a cellphone.
I can even recall our home phone number when I was little and Ladysmith had only four numbers – 2554.
Then again, I have never had to write down a lunch, breakfast or dinner arrangement with a friend.
Hang on… it seems that I’ve had a pretty good memory after all. Is it just that I’ve forgotten how good it actually was/is.
I mean I have done two crossword puzzles a day for years, mainly to keep my brain active. So why did I forget an appointment with the psychiatrist and a lunch arrangement with a friend last week? Why am I so utterly overwhelmed by a leaking pipe in my bathroom that I stand before it and weep?
It’s called Chemo Brain – and if you think that’s a made up thing (designed to excuse my incoherence, my memory lapses, my inability to concentrate) you’d be wrong. It is a well documented side effect of chemo therapy.
Look what I found on that respected MayoClinic website:
Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.
Though chemo brain is a widely used term, it’s misleading. It’s unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors
Signs and symptoms of chemo brain may include:
It goes under other guises; cognitive impairment; chemo dysfunction. I’d give you more words, only I can’t find them. The synapses that are supposed to remember words have gone into stasis.
I think it’s ironic that this is happening to me – a journalist whose life and job depend on words. And here I am losing mine.
It’s been the hardest part of having cancer, harder than losing my hair, losing my breasts, losing sensation in my second toe on the right foot, losing sleep as I step back into an oestrogen-free zone. Losing language, losing my ability to find ALL of my words in my very own lexicon is the shocker. The psychiatrist Kim Wides – even as she offered me stronger drugs in larger doses – said I could expect to get proper brain function back in a year. Or two. Or three.
Then she looked at me with her earnest blue eyes and said she’d never lie to me. I wished she had. Knowing that I am to live in this nether world where there are huge gaps where the words that I once used, and loved used to be panics me. It would matter less if I was a neuro-surgeon. I could point to charts and nod my head. Neuro surgeons don’t need words. Or if I was the conductor of a large orchestra, or a train driver. Or even a scientist like Einstein. None of them need words like I do, like a writer does, like a journalist. People keep telling me that I can fight this wordlessness, that I should do brain exercises and try tongue twisters. Someone recommended that I stand on my head to get a rush of blood to the head, which would jog the brain and reconnect the synapses… Curiously I did have two words that I seem not to have forgotten for her. I can barely keep myself upright. How to even get upside down makes me anxious.
I have a mantra, a positive affirmation that Celeste Loubser, my Port Elizabeth reflexology and healing angel once gave me. I try to say it, but forget how it goes half way through. Which ends up annoying me. It starts: I am a genius, and then I can’t remember what comes after that, so not only do I not feel like a genius, but I feel like an idiot and that’s not really helpful, is it? when you’re trying to find some part of yourself that is OK and that you can count on. I mean, I used to run newpapers for goodness sakes. I used to manage a staff of dozens. I could keep several balls in the air at once, and make decisions (good ones at least 80% of the time) with speed. The other day, I found myself standing before a fridge counter at Woolworths, before trays of Hass and Hall avocados, and dithering about whether I should go for pebble grained black Hass or smooth skinned green Hall… Flummoxed I was. In the end, I chose neither and bought a bag of ready to eat carrots (I hate carrots).
Then I picked up the phone to call Shona, twice. Then didn’t.
And all this after just two chemo sessions, two of the “Bad Ones” out of four. According to my straight talking psychiatrist, I’m in the danger zone. The weeks between 2 and 3 are the hardest, she says. (No joke.) It’s when you realise that things are not going to go back to normal anytime soon. That you’re in for the long haul, that you’ve committed to something that really, really is horrible. Depression deepens between 2 and 3, it’s harder to see the light at the end of the proverbial tunnel, the hand around your throat tightens and things appear bleaker and darker and uglier and sadder…
It’s why she offered harder drugs taken more frequently. Upping the dosage was not an option for me. Wafting through my diminished life incoherently, with even fewer words, is not an option that appeals to me.
But she’s right about one thing. Between 2 and 3 has been a trying time. I am exhausted. I’m so tired that getting out of bed in the morning is a trial. But I have learnt that you can live tired. That you can still move, and breathe and brush your teeth – even though it feels like walking through treacle. You can get things done tired. Not a lot of fun to be had when you are dog weary, but life is possible exhausted.
I keep going to work – mornings only is all I can manage – although I’m not sure how effective or useful my being there is. I can’t keep track of things, and so I’m anxious all the time. Thank goodness I work with some extraordinary people who pretend that I’m a useful contributor. I’m very, very lucky.
Discovery, my medical aid, keeps refusing to pay for certain treatments. I got a bill from Drs Gritzman and Thatcher, a Histopathology and Cytopathology lab, asking for R2 832.20. Discovery had paid R2 462 of their asking fee, but refused the rest. How, I wonder, am I to decide to use a lab that is medical aid rate compliant when I’m out cold on a steel table in a theatre having an operation?
Then something happened that made me cry, that restored my faith in humanity… There was a shortfall of about R6 000 between what Discovery paid out and the charge for two operations (sentinel lymph node biopsy and the bilateral mastectomy) by cancer surgeon Carol Benn. I’ve forked out R40k – over and above medical aid – since this sorry saga began. Overwhelmed, I called Carol’s practice and this is the response I got:
Discovery Health pays according to their scheme rate which seems to be a bit higher than what we know as a medical aid rate but lower than what we charge which are private rates.
I have discussed the rates that Discovery pay out with Dr Carol Benn and as she is very aware about the massive costs that are involved in this type of treatment, she has authorised me to write off any amounts that the medical aid does not cover on your account. I hope that alleviates some of the aggravation and stress as now is the time for healing and we do not want our patients to worry about anything.
Charmain, If there is anything you need assistance with, please do not hesitate to contact me directly on my cell number which I have listed below.
Practice / Accounts Manager
Dr Carol Ann Benn
Breast Care Centre of Excellence
076 878 8307
It was so kind, so unexpected. I am grateful and touched and more than a little astonished.
There are other things that have become bothersome. There’s this thing called peripheral neuropathy, the chemo induced variety. Well, the toes on my right foot have lost sensation and its changing my gait so that I feel like I’m walking like an old person – cautiously and deliberately rather than gaily and with a spring in my step. It’s the most ageing thing, old folk walking, worse than grey hair or a stooped back. It says: I’ve lost confidence and am fearful of falling, of toppling over like a ninepin, of losing whatever shred of dignity is left after incontinence and failing eyesight.
I don’t want to walk like an old person. The oncologist says sensation will come back. But a friend who has been cancer free for 8 years says he’s never regained feeling in his little toe. He jokes about it, but it also means that he’s not been able to play veteran soccer, something he used to love to do.
It’s impossible to tell what each day will bring. Exhaustion is a given. But some days my eyes are more sensitive to the light. Other days my skin hurts. Actually, my skin hurts all the time. So I don’t wear a hat, or a scarf. A friend suggested I should wear some sort of covering because my bald head “made people uncomfortable”. I was not offended by that statement. It said so much about her fear of dying, of coming face to face with her own mortality. I felt sorry for her, poor thing. Sometimes, it’s a good thing to experience the thing you fear the most. You suddenly realise that its not as scary as you thought it was!
Ah, the politics of hair. At work, young African women come up to me and tell me how fantastic my new summer look is. They think it’s a fashion choice. Some of the older men ask if I’ve lost a close member of my family. They think it’s a cultural choice. There’s something reassuring about people not immediately thinking cancer when they see a bald head.
There has been some joy and happiness in the middle of between 2 and 3… my beloved God-daughter Nandi married the love of her young life, Brett, in a fairytale wedding. She looked so happy, so beautiful that it made my heart glad. And, for the first time in a long time, that night, I went to sleep with a smile on my lips and a song in my heart. Thank you darling Nandi.
Chemo session 3 next Wednesday – October 9. You know the drill… send white light, happy thoughts etc etc…
It’s a combination look that I now sport – Uncle Fester meets Sinead O’Connor meets Buddhist Monk meets Nazi collaborator accused meets butch lesbian meets Yul Brynner meets aggro skinhead… and so on and so on.
There’s a history to shaved heads (who knew) that encompasses everything from religion to sub cultural choices to the military (remember that riveting scene with Demi Moore shaving her head on camera in GI Jane!)…. To cancer.
I had just such a heart stopping session on Saturday, with my two best girls on hand to hold my hand.
I was on the phone early that morning, a difficult conversation with a difficult friend and ran my hand through my hair – my frustration fall back habit. And a fistful of my lovely black hair came away in my hand.
My heart lurched in my chest as I weighed up the levels of trauma: on one hand, heart lurching every time I ran my fingers through my thinning hair? On the other, no hair to be run through with frustrated or merely errant fingers? That seemed the natural choice.
Alys agreed as we tried on panama hats (cerise and lemon and tangerine and aqua – none of them suitable).
Mandy and I were meeting Charlotte in Sandton to go shoe shopping – Nandi’s wedding is suddenly upon us. We would, the three of us, find a salon and get a hairdresser we didn’t know to do the deed.
So there we were, me and my best girls, huddled in an arb salon in Sandton. In the oddest coincidence, my neighbour Roze was under a hairdryer when we walked in, and then out – to discuss this huge step. With her head stuck in an old fashioned hairdryer, se didn’t see Rose. So she called me, then – when I didn’t reply – sent me this text: Don’t cut your hair today, she wrote. Do it during the week when you can do it calmly. It is a big thing so be in control. In a mall on a Saturday is not right. Just my opinion, Roze.
It was such a gesture of kindness, a message sent to slow me down and make me think about what a big step it was. Roze didn’t want me to underplay this head shaving thing, to treat it too lightly. Losing your hair is a big deal – something that could not have been more poignant – sitting as she was with giant curlers in her hair under a hairdryer. She was having her own crowning glory moment.
I suppose, in a way, it was time for me to have mine. It was the best time for me to do this, with my dearest friends beside me.
Joy, a blonde slip of a girl, brought out her electric shears, and my own GI Jane session began.
Mandy, darling Mandy, offered to go next. Shave it off, she told Joy: in sympathy she said. Charlotte and I had to be firm. She would regret it. I was just touched by the heart-warmingly sincere offer.
When they’d done, the girls in the salon refused payment – which made Charlotte and me tear up.
We’d bought a number of caps and hats at Woolies just an hour before, but I didn’t put one on as we strode out into the shopping centre. I honestly didn’t think I needed to cover up.
I have cancer. My hair fell/ was falling out. I have not been convicted of murder and am bald as a punishment. I am not a Nazi collaborator being paraded down a Paris street barefoot.
There is nothing shameful about why I have no hair. Which is why I am choosing not to cover my head – all of the time. Of course I wear a hat in the sun, and a scarf or cap or cloche when I’m cold. For the rest, kaalkop for me.
There was much hugging and well wishing from hairdresser Joy, and salon helper Nicole. Their random act of kindness – shaving off my hair for free – is something that reaffirms my belief that most human beings are kind, considerate and genuinely nice. And caring.
I have been blown away by people.
Alys arriving with a bag full of supplements and vitamins and a healing mouth wash and fresh Aloe vera… Sahm’s twice weekly Reiki. Maggie and Bridget cooking me nutritious delicious meals. Chippie and Jeremy offering to fill my freezer with home cooked meals. Janine lending me her flat to accommodate my nephew. Rose and Vinay looking after me the day of the chemo – sitting with me until I fell asleep, feeding me drugs to take the nausea away. Patti making sure that there are always beautifully scented fresh flowers in my office at work… hundreds of FaceBook friends sending me positive energy – rooting for me in a way that makes my heart glad. Christina in George giving me Bodytalk sessions from afar. Sophia getting a second opinion from her oncology specialist daughter in Cape Town. Pam sending me a beautiful pink Tuberose candle with a pink notebook to write my thoughts in. Peter calling from deep in the Eastern Cape every few days with words of love and support. Hilary making sure that my early mornings (a time of anxiety and dread) are company and coffee fuelled. Carol from PlettenbergBay sending me a wonderful book on healing and a magnificent rose quartz ball (along with sugar/wheat/taste free chocolates!!). Romana having bandanas made (with tiny angels sewn into the hem), then getting someone to crochet me a cotton beanie and posting them from PE. (Heaven help me if I’ve forgotten someone who’s been kind!)
Then there is the phonecall that came from Mrs Cowley, my wise guru. Mrs Cowley the medical intuitive whose opinion I trust, whose generosity and kindness are legendary.
“Welcome the chemo drugs as they enter your body,” she told me. “Bless the red liquid as it drips into you. Bless the people giving it to you. Thank it for helping your body to get rid of that which no longer serves a purpose. Do not fight this. Work with it, thank it, bless it.”
And on a more practical note, she recommended a high high nutrition diet, and a visit to a homeopath to ensure that my immune system is up to scratch and able to fight off any infection.
“One thing that is paramount: Do not have a treatment if you are feeling tired or weak or if you are sick in any way.” Dear wise wonderful Mrs Cowley.
I bumped into some of the women I first met in Carol Benn’s rooms at the cancer clinic at Milpark at the start of all of this.
And I am aware of how astonishingly easy my horrible time has been compared to some of these women.
For a start, I am so grateful for the people I work with. The support on days when I have turned up at work (for my own sanity) but been unable to focus or participate very much has been mind bogglingly generous.
My colleagues have been spectacularly caring. I’m a very lucky girl indeed.
I hate being predictable, but I have embarrassingly followed the Kubler Ross model, and have gone through each of the phases: denial, anger, bargaining, depression (lingering on this one a bit) and acceptance.
I suspect that I will dip into each of these phases again and again throughout the year ahead, when something new comes up. The anger has dissipated considerably. I only ask “Why me” every second day! I suspect that the mood stabiliser has something to do with this!
Someone sent me a fortune cookie where the message read: Find the blessing in your current situation.
Well, I have/ I am finding the blessing. I want to rush up to menopausal women in the middle of a hot flash and say: Don’t lose your rag, lose you hair. Heat escapes from the human body through the head, and so I am finding that my bald head helps regulate my body temperature. Its quite remarkable! If more women knew this, there would be a hair shaving revolution and the streets would be filled with militant middle-aged skinheads.
Seriously though, I am finding other blessings: I am reconnecting with the human race. I am learning to rely on people, I am asking for help. I’m letting people help me.
People are generous – with their time, with things, with thoughts. People are kind.
I have always been a little suspicious of people. I’ve questioned motives and reasons for people behaving in this way or that. I have never given people the benefit of the doubt – always believing that there was some hidden agenda for a particular behaviour.
And now I am having to eat humble pie as I discover that random acts of kindness are just that – acts of kindness that come from a place of deep empathy and care.
I said to Mandy the other day: All this astonishing goodwill, these acts of kindness… I must have done something good in a previous life to deserve all of this. To which my dear friend replied (very kindly but not necessarily accurately it must be said): In this life, darlin’, in this life… I want to believe that, but…
I want to change everything about how I see the world, about how I interact with it, about how I see myself in it. And I want to start now.
What is a life worth? At which point are you allowed to say: Stop. I want to get off. (And thanks for all the fish!)
Are you ever allowed to get off? Scotch that, we all know you are not. Killing yourself, in just about every religion is verboten, the ultimate sin. And in certain countries, the very act of attempting suicide is a crime.
No matter how dire your situation, “right minded” thinking is that every effort should be made to try and get you to change your point of view until it is in line with that of religion, of societal norms, of so called “acceptable” parameters. Life. Living. Keeping on. That seems to be paramount.
And so it was that the breast cancer machine went in to action when I vehemently declared that I did not want the year-long treatment on offer.
What were the odds: a 40% chance that the cancer would return, possibly within a period of two years.
But that meant a 60% chance that it wouldn’t. Those, for me, are jolly good odds. Especially when you get back to the question: What is a life worth? At what point do you say Cured, but at what Cost?
I left the oncologists rooms armed with the knowledge that I could take cancer off the list of things to die from. After all, the oncologist was offering me a cure. Not palliative treatment – he insisted – but CURATIVE.
But, that would take a year of the most horrific treatments. Worse, it would turn my world into Cancerville, sharpen my focus to cancer; limit what I would talk about, think about, read about, dream about. It’d be cancer, cancer, cancer. Cancer with breakfast, on my birthday, at Christmas, at dinner, in the supermarket… I’d have to start signing off CC: Cancer Charmain. People would come up to me, touch my shoulder and ask in a hushed tone: “How ARE you?” People would tell me endless stories about people I don’t know (their aunt, the woman they work with, a distant cousing, best friend, mother, aunt…) who had fought cancer and won. Or lost.
Couldn’t I decide to NOT have a year of treatment, and be cancer free? No? What if I did the treatment? What kind of deal was I making?
It felt Faustian – my pact with the devil: You have my hair, my breast tissue, my peace of mind, and I’ll have what? Life?
It felt counterintuitive: rather like signing up for, say, 12 bouts of water boarding at GuantanamoBay – willingly. And paying a whack for the non-pleasure.
It also felt Catholic, submitting to suffering like Our Lord on the cross, sacrifice for the greater good – rather like fasting (no meat Fridays in my household growing up) or giving up treats for Lent.
I didn’t want these choices. I wanted my old life, a little good, a little slothful, a little dull. A lot pretty damned ordinary. That’s it, I want ordinary. Run of the mill. Occasional episodes of happiness in a general drama of pain. I called Charlotte, fresh off a plane from France, and she came and shared my shock, and our eyes grew wide at the choice facing me. Life? Or life shadowed by death. I went over and over the odds: 60% in my favour, 40% against.
I didn’t sleep and when I did my life appeared in equations: numerals draped around Dali’s ticking, melting clock. I had night terrors, awake writhing in my bed. What was my life worth? How much did I value it? I’d always said I didn’t want to live too long, as if I or anyone has a choice in these things – unless you kill yourself, and I don’t want to. A hand planted itself around my throat and stayed there, a reminder of my mortality. I had a dressing change the morning after the visit to Dr Moodley. Sister Sheila said it was a no brainier. Of course I had to do it. A year, she snapped her fingers, will go by just like that. But she was missing the point. It would be an all consuming year - that was the point. I popped into Dr Benn’s rooms and asked Julie for a list of women who’d done a year of the Herceptin treatment. I wanted to interview them. And then I howled and would have beaten my breasts if they weren’t wounded and sore. So Julie took my elbow and led me down the corridor to the practice’s in-house oncology psychologist. Emergency appointment, she mouthed to Karen Applebaum’s receptionist. An hour later I was weeping in new surroundings, on Karen’s very comfortable couch. I’ve been in therapy just about all of my adult life. Jungian, Freudian, behavioural, NLP (neuro linguistic programming)… Done that. But this was different. The therapist didn’t have to ask how I was feeling. My honking loudly into a wad of soaked tissue was a dead giveaway. She knew why I was here. And she didn’t pretend to be neutral. She picked a side. She picked my “let Charmain live” side. She declared her interests upfront. I’m fighting for your life she said. I snivelled that I lived alone, had no support system and couldn’t go through with this alone. She asked if I’d asked for help from my friends? No? Well I’d be surprised how grateful people are when you let them help. And anyway (I was utterly gobsmacked by this) she would drive me to chemo if I couldn’t find anyone else. No big deal. I pressed on: I had no children, dogs or pot plants so really, no dependents. Why not die early? Hmm? She wondered why I wanted to commit slow suicide. That jarred my Catholic (lapsed) heart!! She called the oncologist (a good friend, on her speed dial!) for more information. We made a time for a few days later, Karen hugged me, and off I went to make my decision. I canvassed opinion from everyone. Blaise in Bangkok said he’d come and hold the bucket if needed, but it was my decision. Sahm, dear old friend Sahm came home from France with a wonderful miraculous medal of Our Lady which I carry everywhere on my key chain. She voted Life. And more importantly, in a way, she made an offer so generous that it still astonishes me: a Reiki treatment the day before every chemo session, one three days in, and an occasional one I the intervening weeks!! (She’s made good on the promise. Her Reiki bed lives in my study and it is often used!!). Darling, wonderful little sister Sahm.
I saw Karen again, utterly undecided. Some mornings I woke up resolute: I would NOT do this. I fancied the 60% odds. I would buy a new home and take exotic holidays with money Discovery would not cover for Herceptin (which comes with a R500000 price tag. They apparently pay a large portion, but not all). Other mornings would be wracked with indecision, doubt. Yet other moments were decided: get this thing done and so remove the sword of Damocles hanging over your head! Every non decision felt right at the time. It was a horrible, horrible time. Karen made another call to Dr Moodley to get another of my questions answered. He sounded frustrated: he was offering a cure! What more did the Aunty want? In that instant I said OK. I would go ahead with it: I would take on a year of chemotherapy. Heaven help us. But I needed help. I needed drugs to keep the black dog (an old friend) at bay. Which was how I got to meet Kim Wides, an oncology psychiatrist. Petite, blonde, pretty, her bookshelves giving equal space to back issues of Vogue and Thomas The Tank Engine and Grimm’s Fairytales (she has children), Kim is reassuringly efficient. And warm and kind. She, like Karen thought I should not be allowed to choose the no treatment option. I was too depressed to make the right decision. And so she gave me a mood stabilizer, an anti anxiety med (just for the week leading up to chemo session 1) and a sleeping pill.
We had to be at the centre by 8. Charlotte fetched me and our sombre party of two – silent in the face of what was to come – walked into the centre. For a brief second, my urge to bolt was strong… I felt as though the air had been sucked out of the room, that I couldn’t breathe. Was I really going to put myself through this?
Was it worth it? The cost seemed to high, and at this very moment, in this room filled with people desperately wanting to live, it seemed churlish to have these thoughts when I was being offered so much more than most of them – the chance to say goodbye to cancer forever.
And so we sat, Charlotte, Mandy and I. Two and a half hours of red dripping into my hand. Me willingly taking into my body the stuff that will kill a lot of me (like my hair follicles) before it cures me.
I went home and slept for five straight hours, waking with a monster headache and the worst nausea I have ever encountered. Thank goodness I live next door to an anaesthetist – whose job it is to manage nausea. I called him, and he came with drug, for my headache, for my nausea. Then he and his wife sat with me until I started to nod off, turning off lights, and locking the door behind them. I slept.
Day two was a good day. No nausea, everything pretty OK really. That night I woke at 2am, and threw up a bit, nothing horrific.
And then on the Friday the weakness came: exhaustion and despair descended on me like a cloud over TableMountain, sudden and all consuming.
I woke at 2.17am on Friday night, anxious and afraid. I rose from my bed and stood beside it, not knowing what to do. It was like I had amnesia and could not remember how to behave, what to think, what to feel, what to do. Should I lie down, or drink a glass of water? Should I walk around the apartment? What?
Saturday was diarrhoea day so acute that I had to miss my Nandi’s wedding shower, something I had been looking forward to for months. I lay in my bed, weak as a kitten, desperately sorry for myself.
Sunday dawned bright and sunny, and I was miraculously fine. I met Hilary for an early morning coffee, then we went out for a delicious vegan lunch.
By Monday, I was right as rain, ready for work. Delighted to be going back to work – work, with its people and discipline, with scheduled meetings and with a sense of purpose. My mood lifted.
On Friday morning, I woke to find a few dozen strands of my long hair on my pillow. It hit me hard. This is happening, Oh No, this is happening.
Also on Friday, at my weekly wound dressing, the reconstruction surgeon made the decision: my right nipple, saved during surgery, was dead and he would have to remove the necrotic tissue.
Back to theatre for me on Monday.
But before that, I called a hairdresser I’d only just met, and asked if he’d cut my hair off. Psychologically it was the right thing to do.
I don’t know if I’m going to go the wig route. I’m thinking more along the lines of bandanas and hats, or exotic scarves, or even cotton beanies… I might even just go bald. I have cancer. It’s not catching. It’s not something to keep hidden under a wig. Oh well, lets see how I feel when / if the hair goes.
Monday Morning: Mandy fetched me at 6.15, we were checked into Milpark by 6.30. And there we sat, and sat. And sat. Until 3.30 when I was finally wheeled into theatre. Why the plastic surgeon wanted me checked into hospital by 7am, I do not know. It was such a waste of a day. For Mandy. For me. More importantly, I’d drunk my last drink of water at 9pm the night before, so I went into surgery with a massive dehydration headache, starving and cold! All it would have taken was for the doctor’s assistant to call me to say I was on his afternoon list, and could I get to the hospital by lunch time! Small courtesies would certainly help so much and waste less time. Heaven knows I’m taking three days off work every three weeks and really I don’t want to take off any more time than absolutely necessary.
I went home within an hour of the operation and am sitting at my desk now finishing off this episode of my blog.
Here’s what I am learning about my body: That it is strong and resilient, and that I am handling this process (for now) with astonishing resolve and remarkably little discomfort and pain.
Except, that is, for the fact that I devastated by the hideous pigmentation marks that have appeared on my face, and that get darker every day…
I go back for my next round of chemo on September 18. Send me a happy thought on that day!
Today is a good day. I can write today. I was not able to write in weeks 5, 6, 7… I tried, but the result was so bleak, so utterly without hope that I had to call a halt to putting into words what I was feeling. Why? Because to document such misery, such anxiety, such all consuming fear and trepidation would make it real, would cast it in stone and give it a permanent place in my newly shattered life. And we couldn’t have that!
It’s like Pain Memory (something I only learnt about on July 26th, the day of my bilateral mastectomy): to be avoided at all cost.
Here’s what little I know about Pain Memory, learnt from several specialist pain and nausea managers – also known as anaesthetists – that I’ve encountered in recent weeks. Humans remember pain so they don’t repeat risky or dangerous behaviour that will hurt them. (Which is why anaesthetists ensure that you’re as pain free as possible when you emerge from surgery and try to keep you that way for the first 24 hours.)
So my self protection filters kicked into action in weeks 5, 6, 7… in this case, avoiding the entrenchment of mental anguish. I pretended, not terribly successfully I must admit, that everything was fine. (My friends who witnessed breakdown after breakdown, flurries of tears, fits of despair will attest to just how unsuccessful this was) Sort of. Fine in a horrible way. Well, actually not fine at all.
I don’t know why things descended into a Hieronymus Bosch canvas when they started out so well.
Fresh from St Francis Health Farm, I was detoxed and ready for the op. My bestie, Mandy fetched me at the crack and we checked into Milpark, probably the most expensive accommodations I’ve been in. Ever.
By 8.30 I was wired in a procedure called a hook wire biopsy which places a very thin piece of wire in the centre of the tumour. Apparently this pinpoints the epicentre of the lump for the pathologist.
A lovely anaesthetist, Dr Pieter Du Plessis, came to visit – pronounced my lungs in great shape, and not just for an asthmatic ex smoker. He’d see me in theatre. I wished we were going to see something fabulous. Bob Fosse’s Pippin perhaps, with a charming moral tale to learn as we tapped our way through Sweet Summer Evenings…
Claudia was in a bed across the corridor in the high care ward we would spend the night in after our operations. She too was having a double mastectomy.
At around 1, with Mandy in tow, I was wheeled to the theatre – a word with seven meanings.
the·a·ter or the·a·tre// (th-t r)
1. A building, room, or outdoor structure for the presentation of plays, films, or other dramatic performances.
2. A room with tiers of seats used for lectures or demonstrations: an operating theater at a medical school.
a. Dramatic literature or its performance; drama: the theater of Shakespeare and Marlowe.
b. The milieu of actors and playwrights.
a. The quality or effectiveness of a theatrical production: good theater; awful theater.
b. Dramatic material or the use of such material: “His summation was a great piece of courtroom theater” (Ron Rosenbaum).
5. The audience assembled for a dramatic performance.
6. A place that is the setting for dramatic events.
7. A large geographic area in which military operations are coordinated: the European theater during World War II.
There was recon ace, Dr Charles Serrurier, in a funny blue cap, and Dr du Plessis, and a lot of bright light, and a few angels hovering overhead.
I was returned to the ward by 5pm, chipper and quite cheerful. Marc and Larry’s flowers had arrived – all the way from Australia.
My beloved nephew Joe was there, all the way from Los Angeles. He’d warned me that he was coming to look after me – and here he was. Lanky, 20, gorgeous. So much like my brother, his father (who died so tragically and so young in May 2012 after choking in a restaurant) that it took my breath away.
Mandy was still there, my dearest dearest girl.
We were three in the ward that Friday night, Claudia, Leonie and me. Six weeks earlier, Leonie had had her bilateral mastectomy, only her T-junction wound refused to heal. She was taken back into theatre, opened up and re-stitched. Claudia and I quietly whispered that we wished we didn’t know that.
Saturday was party day. Attached to a pain pump, in my own private ward, the day began with lavender sweet peas and Hilary. Then came Janet with tulips, then Sue, then Joe and Shareen and Maggie and Nadine with a cappuccino, David and …
Flowers in buckets and bunches and floral displays that resembled a 60s hairdo arrived and scented the room.
I slept the sleep of the dead, my bed raised, on my back, my arms at my side. It was the last good sleep I had.
Sunday dawned, the day of the 702 Walk the Talk. Roads would be closed. Getting me home would be impossible. Well for anyone but David Forbes. My friend the intrepid warrior, the fighter for justice, on the side of those unable to speak for themselves. Himself a survivor of cancer – now seven years clean – David has been a rock. He understands, he listens, he lectures, he hollers sometimes. But mostly, he knows.
David would get me home. And he did. He and Nadine had me home by 10am. And then I was alone, in my home, on my own. Just me and my drains: a bloody plastic pipe dripping down from under each armpit into a clear plastic box.
I sat down on my leather couch, but that was too uncomfortable, so I plonked myself on a dining room chair at the table, put the drains box on the floor next to me, and surveyed the scene.
Me. Alone in the apartment. Immobile, attached as I was to the drains.
And the panic set in. The newness of the situation was overwhelming. Whereas I have always loved the solitude of living on my own, of inhabiting my own space, now it was a hostile environment, a lonely cave where I felt more than a little alien.
On Monday, Joe arrived and I felt like a plant exposed to sunlight after a good watering.
Joe made me laugh. Joe drove me to the hospital to empty my drains, Joe driving on the wrong side of the road, diffident but confident at the same time, a look of intense concentration on his face as he made unfamiliar turns into what – for him – would be into oncoming American traffic. Joe making me a cup of coffee, Joe reading me his remarkably good poetry. Joe and I having picnics on my bed. Joe playing me his remarkably good musical compositions. Joe with his quirky sense of humour and his gargantuan appetite. Joe reading quietly while I napped.
The house was a fluid stream of friends. Mandy filled my fridge, twice. Mandy bought me a beautiful top to go with my new breasts. Mandy brought flowers and magazines and books and Bio oil…
Eyds brought olive oil and her favourite book. Susan brought a thick fat candle that smelled like a forest. Maggie came armed with a murder mystery and a Buddhist Zen book, to suit either mood…
Flowers arrived, delivered by the doorman who then informed everyone in my block of apartments that I was sick. And so flowers came from Chibby in 502 and Corrie in 501. Rookaya brought soup.
The days slipped into a gentle routine. Joe, breakfast out. Sleep.Visitors. Sleep.
It was the oddest thing. I couldn’t read. Or watch television. I spent a lot of time pacing. I felt restless and anxious. I cried all the time. Because I felt sad. My poor visitors had to watch it. Me blubbing. And then blubbing some more. My rational mind kept telling me it was the anaesthetic, the pain killers. My resistance was at its lowest which was why I was crying. Sometimes crying can be cathartic. Often I feel tranquilised after a good weep. But this didn’t feel good. It felt a bit out of control and helpless.
Then around 8 days after the operation, the routine changed. Hospital. To Empty drains. To have wounds dressed. To visit Doctors Benn and Serrurier.
It was in Section 6B that I met wound specialist Sister Sheila. She has become my rock.
Fluid poured out of my wounded breasts at the rate of 150ml a day for 21 days. Dr Serrurier’s protocol is that the drains can only be removed if the level drops to under 100ml for three consecutive days.
Until the drains were removed, I was forbidden from driving. I couldn’t bath or shower because I could not get the wounds wet under any circumstance. I couldn’t wash my hair because I couldn’t lift my arms over my head. A flannel facecloth is no substitute for a bath.
My skin dried and sloughed white flakes. My hair took on the patina of death – dull and lifeless. And green. Like Rosa with the long green hair in Isabel Allende’s House of the Spirits.
I could smell my skin – scrubbed as it was with antiseptic bio soap.
Trapped, I did what I do when faced with forced immobility and rising panic. I ate. And ate. One morning I looked down and all I could see was a mound of stomach. Really? I’d grown a middle aged belly in the space of a few weeks? And then it dawned on me. My breasts had been reduced from a double D to a C cup. This meant that, for the first time, I could actually see my stomach as I stood looking downwards. It had always been there, just hidden in the shade of my pendulous breasts. It did little to reassure me that I hadn’t done all my middle age spreading in weeks rather than years.
My appointment card informed me that I was due to see the cancer surgeon Carol Benn on August 6. Tuesday.
Mandy took me. We met Claudia and her mum and I was mortified to see that she’d had her drains removed while I was still firmly attached to mine. In a ridiculous, eccentric moment, I invited Claudia and her mum to join Mandy and me in my session with Dr Benn. Looking back on it now, it was the oddest behaviour. And the fact that they agreed seems odder still. That said, there we were, with me being told that my grade 3 ductal carcinoma had been removed. This was an ER/PR positive tumour – which roughly means that my cancer was hormone fuelled – 8 out of 8 receptors apparently. Carol was a little concerned by the presence of Her2 and so she was asking for new pathology tests to be done. It would take another week or so.
I’m an idiot. At this point I should have asked for possible outcomes if the pathology results were one way or another. I didn’t. I went home and grumped around with my bloody drains and my bad attitude. Little did I know that all of this, horrible as it was, was going to get worse…
Eventually, three weeks after my operation, the drains finally came out. By this time the port under my right arm was raw and ragged from inadvertent pulling – often as I slept. Sister Sheila, my new best friend at the wound clinic, soothed my damp brow as I wept. She just sat with me for a while, holding my hand while I cried, shushing me gently.
Between hiccups, I explained that it was more than just the cancer that was getting to me. I’d had to come off my HRT and so my body was daily being stripped of more and more estrogens. My menopausal mad mood, not seen for five years on Hormone Replacement, was returning and I could barely recognise myself. But more than that, the extreme annoyance and irritation or yore had been replaced by a very unattractive self pitying weepiness. And in this space I could not see the light, or feel the sunshine on my skin or make sense of anything. And if this continued, I would go mad. The soft shushing continued. My arm was stroked, quiet occasional clucking…
The phone came from Julie one morning. Carol Benn wanted to see me. Tuesday, 13th August. At one. And then the news came. I had the perfect storm of cancer. Hormone positive, HER2 positive. The wrong grade (3) which meant quickly multiplying cancer… I was going to be ok. But it would require some protective treatment. She’d spoken to the unit’s oncologist and had warned him that I’d be round to see him this very afternoon.
Oncologist? Follow up treatment? I was truly flummoxed. I had not factored in chemotherapy. At all. I thought that I’d had a really well behaved tumour: It had not spread into the sentinel lymph node, it was small, 1.5cm. It was aggressive, but we’d caught it early.
I assumed that the surgery had solved all my problems and that once I’d recovered from that, I could get on with my life.
That was not the case.
Bewildered, quite aggressively angry, and filled with dread, I drove from Milpark to the Donald Gordon to see oncologist Dr Devan Moodley.
I barely heard Dr Benn’s receptionist Julie when she told me he was the most respected oncologist around. That he was academically and intellectually superior in every way and that others deferred to him because he was so accurate.
Going into Dr Moodley’s rooms in the cancer section at the DG felt like a descent into hell. For me, hell is the unexpected, the never-before-navigated, the unknown.
Venturing into unchartered territory fills me with trepidation in good times. Take away my menopausal madness meds and you could have multiplied what I was feeling by a thousand.
Dr Moodley is a very tall man. He has a booming bonhomie. He uses the word pathetic (to describe just how poor our understanding of cancer really is after all this time) a lot. He draws diagrams to make points. He has an unusual sense of humour, not quite gallows, a little macabre. He drives a Porsche Cayenne.
I could barely hear what he had to say after his opening statement: that treatment would take a year.
A year? A YEAR? And here I’d been thinking a bilateral mastectomy had saved me. That with the lump out, the cancer was gone! Talk about getting it wrong.
To give him his due, he spent an hour and a bit telling me why the treatment he was offering me would draw a line under my cancer. It’s not often, he said, that he was able to tell cancer patients that he could cure them. In my case, after a year of treatment, he could happily say that. Curative rather than palliative treatment was what he could offer.
The treatment would be broken into three parts – three months of three weekly doses of the red devil concoction of drugs called AC (unfortunately my father’s initials): A for Adriamycin and C for cyclophosphamide.
Then three months of weekly doses of another drug starting with T, then six months of a miracle drug called Herceptin.
This appears on the Herceptin website:
Who is Herceptin for?
Adjuvant Breast Cancer
Herceptin is approved for the treatment of early-stage breast cancer that is Human Epidermal growth factor Receptor 2-positive (HER2+) and has spread into the lymph nodes, or is HER2+ and has not spread into the lymph nodes. If it has not spread into the lymph nodes, the cancer needs to be estrogen receptor/progesterone receptor (ER/PR)-negative or have one high risk feature.* Herceptin can be used in several different ways:
*High risk is defined as ER/PR-positive with one of the following features: tumor size >2 cm, age <35 years, or tumor grade 2 or 3.
Me? I had all of those factors! Dr Moodley beamed at me. He was offering me a cure. A CURE! He looked a little perplexed when I asked what would happen if I refused the treatment.
His manner changed. He sat up straighter. If I refused treatment, he said, there was a 40 percent chance that the cancer would be back. Within two years. In that instant, my life changed immeasurably…
It’s booked. Friday, July 26, is operation day – the day in which two surgeons work together: one to remove the tumour and all surrounding breast tissue; the other to put my breasts back together in a way that makes them firmer and higher than they’ve been in a long, long while. I suppose there’s that to look forward to, something to hang on to rather than thinking about the process involved in getting there.
I’m ready; physically, mentally, emotionally. And it’s all due to this last week spent at St Francis Health Centre under the loving care of that famous medical intuitive Mrs Annelise Cowley. It was the best gift I’ve ever given myself – a few days breathing room, to take it all in, to find a quiet place in my mind and in my heart, to make sense of it all – in my very own way.
I wanted to come away physically more prepared for the operation and the detox at St Francis did the trick. I kept a diary!
I’ve just had dinner – a boiled mielie and a bowl of stewed pears. We numbered 9 around the table and as we introduced ourselves to each other, telling each other why we’re here, what we expect out of our week at the health centre, I’m in awe of how a group of people are thrown together at a very specific time… to teach each other lessons, to hold each others fears. There are three women in this group I know will be lifetime friends, women whose connection to the realm of the angels is palpable, women I can learn from, share with and confide in. They, all three, have kind eyes.
I sit in the blue dining room – blue is the colour of communication, of the throat, of dining. I’m uncomfortable with the blue. It’s so cold. Yet why? It’s my medium. I can talk. It’s what I do. Maybe it’s because blue is also about food, and about enough and I have to confront (among other things) my relationship with and issues about food, and sugar, and my feelings about “enough”. Am I enough? Can I ever have enough? What is enough? What’s good enough? Enough! Big word for me. Blue, it seems, brings out my insecurities about “enough”. But that’s what I’m here to deal with.
After our mielie (delicious, organic, crunchy on the cob) we head off to have our body stats done in the treatment centre, which is pink. Pink: The colour of unconditional love. I feel comforted in this warm place, filled as it is with the colour of unconditional love. The centre of the room has a glass topped table. Under the glass is a spiral of rose quartz stones. I put my hand over the formation of pink stone and I can feel the heat coming off it. Good energy. Unconditional love energy. And I lean over the table and my breast throbs – the cancer aches as pure love unsettles it.
Here, in this spiritual space where angels live, I must learn to love myself. To forgive myself, and the cancer. I’m being flippant so I tell Christina that I wish my mother were alive so I could blame her and she says the trick is to learn not to blame anyone. And for some reason it resonates with me deeply, and I have a miniature labyrinth in my hand and my finger is tracing along the grooves and there is a surge of hope.
The night sister invites me into the room to measure my body stats and I have to get on the scale and to stop myself from looking I ask her when I can see Mrs Cowley and she tells me I have to make an appointment. I tell her I have cancer and I think Mrs Cowley can heal me, and she looks at me – straight in the eye – and says: “You’ve come to the right place. There are angels here.”
And a sense of calm settles over me, and I have hope, and I walk to my room with a smile on my face. And as I unpack, I realise my swimming costume is pink, and my nightdress – the colour of unconditional love. I realise that I can’t read the murder mystery I’ve brought (Hakan Nesser’s Borkmann’s Point). It’s entirely inappropriate.
So I open my other book C G Jung’s Modern Man in Search of a Soul. It’s not quite 8.30. I settle in to read.
Day 1, 2, 3
And so it begins. The days morph into each other – massage, steam baths, reflexology, carrot juice, vegetable broth, aquarobics, Tai Chi, calesthenics. Meditation in the sanctuary, walking the labyrinth. The Labyrinth: walking in should deal with the past, the centre is the present, and the walk out focuses on the future. Each time, I ask a question at the start, and I’m surprised by the answers. I hear my father’s voice as I walk, and the trees rustle like they did at Besters when I was a child and my thoughts are stilled and my fears allayed.
On day 3 the ache in my lower back began, a dull throbbing pain that demanded that I keep moving, that refused to let me sleep – or even lie down. And so I roamed the corridors for a night, seeking relief from Tissue Salts 8, Mag Phos (handed out by night nurse; three tablets under the tongue). Coming off the coffee she said, though I think it’s that, as well as getting rid of the isotopes and the iodine dye and the anaesthetic… Eventually at 5am she called Mrs Cowley and I was allowed one Panado which gave me 30 minutes sleep. It took three days to stop squirming; for the pain to reduce to a dull throb.
On Wednesday night, I have a sequence of dreams.
In the first, I’m in my childhood home, standing in the entrance hall with my brother and there’s a noise on the front porch and we’re frightened. I peek through the window, and there’s a giant girl standing there. I open the door and yell up at her: “What do you want?” and she says she’s come to see the garden. And my brother and I are filled with indescribable relief. We’re safe. This giant girl just wants to smell the flowers.
In the second, there are gunmen in the house, and I’m with my brother and sister in my childhood bedroom. They’re trussed up like Thanksgiving turkeys for some reason, and I have to keep them safe from the armed men slowly searching our home. I open my bedroom cupboard and suddenly realise there’s a secret panel behind which we can hide. We clamber in, shut the door, and as I begin to untie them, I realise we’re completely safe; that nobody will find us in our hidey hole.
In the third, I’m with my mum and we’re in New York sitting on a bench in Washington Square. I look down and there’s an enormous boil on my leg. I prick it, and litres of clear liquid seeps out. As the last of the liquid runs down my leg, the wound heals itself. I look up and there’s a huge billboard with a man called John Barbarosa on it. And he winks at me and I laugh and mum laughs, girlish, tinkling laughs. We’re happy. And I’m healed.
It’s ironic that as I read Carl Jung, my sub conscious speaks to me through my dreams and I am reassured that I am safe, gathered in.
Day 4, 5, 6
Mrs Cowley day. She comes to fetch me from the waiting area, a small white haired woman dressed in soft pink. She leads me into her room and it is a safe haven, a sanctuary filled with angels and books and homeopathic medicines and she looks at me with her piercing blue eyes and I feel like she’s looking into my soul and I’m overwhelmed. I begin to cry. I can’t speak. I don’t have to.
She tells me cancer is a blockage in the body, it’s about being stuck. And she reminds me of a recent period of intense unhappiness, of feeling stuck. And also of a time of extreme fear. And she asks me to forgive all those involved, and to love and forgive myself. And I cry some more. Then she gives me an affirmation, to be repeated over and over and over and over again. To shift the frequency, she says. To dispel the fear, to let in the light. And I am to surround myself with love. By changing the frequency of fear to love, I will allow things to change in my world and in my life.
As I said at the start, I have begun the process of healing. And so, I truly am ready for what lies ahead this week. Mrs Cowley left me with this image, which I’m hanging on to: angels in the operating theatre singing Schubert’s Ave Maria. My surgeons, surrounded with the pink of unconditional love, deftly working my flesh. What could possibly go wrong?
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