In the Pink: Visiting Cancer Country

Car accidents, burglaries, job losses, relationship break-ups, cancer. Distressing occurrences, but they happen to other people. Aged fifty-two, I have routine mammograms every two years. Early morning appointments at a local clinic so I can get on with the rest of my day and cross that procedure off the medical check list, which has started to lengthen in middle age. But a letter from Breastscreen arrives with suspicious speed after the last mammogram, and suddenly I begin to wonder if I’m one of those ‘other people’.

The tone of the letter is upbeat and warm, considering the news that is being imparted: ‘an irregularity has been detected’. I am asked to attend the screening clinic at a city hospital for further tests: a more detailed mammogram, and if that still shows ‘areas of concern’ I will have an ultrasound, and if that doesn’t clear me then it’s core needle biopsies. All of these procedures are explained in the letter, along with the reassuring observation that nine out of ten women will be given a clear result after the mammogram and ultrasound. I’m about to become the one in ten who is not cleared.

Not wishing to worry my children or husband, I have played down the whole call-back procedure and go into the clinic on my own. It’s not a wise move. All the other women there appear to be accompanied by family members or friends. The surroundings are comfortable—couches with a colourful scattering of cushions, tea and coffee on offer and a fair range of current magazines and newspapers. The staff are exceptionally friendly and considerate, given the number of patients they have to deal with and how many languages are being spoken and translated by other family members. But the atmosphere is tense. We all know why we are here.

The mammogram and the ultrasound procedures don’t clear me, and so I’m prepped for the core needle biopsies. A quietly spoken, gentle Malaysian-born doctor in white coat and headscarf talks me through the procedure and permission form. She blushes when enquiring about breast implants—if I’ve had them I’ve been dudded, I sigh, looking down at my flat chest. She ticks ‘no’.

I’ve already done my reading on core needle biopsies—local anaesthetic into the breast followed by the insertion of a hollow needle that cuts and removes small samples of breast tissue. The pressure from the needle insertion is considerable and quite painful, despite the local anaesthetic. It feels to me like a staple gun. After three of these, all inserted in the one small area of my left breast, I’m feeling faint. The attending nurse sits me up slowly, places a small icepack in my bra over the treatment area, and gives me water and some sugary sweets. It’s then that I fully realise the foolishness of attending the clinic on my own. I don’t feel capable of getting myself home; I’m almost in tears and I feel violated. A nurse brings me a cup of tea and some painkillers and organises a taxi for me; my husband is at a presentation that morning and his mobile phone is switched off. Goodness knows what he will make of the garbled, distressed messages I leave for him, but I just want to get home and go to bed.

It’s there that my daughter, returned from university classes, finds me curled around the comfort of my quilt, my arms folded protectively across my breasts. She brings me tea and a box of tissues and gently prises the information from me; she wants all the details, she says, because then the whole thing won’t seem so surreal and scary.

Over the next few days the needle bruises turn yellow-green and then fade; they have almost vanished by the time I return to St Vincent’s for the results of the biopsies. This time my husband is with me and is holding my hand tightly as the specialist discusses the ductal carcinoma in situ that has been found in my left breast. Of more concern is the smear of malignant cells visible on the high-definition mammogram—not many, but possibly on the march.

Within two days I have an appointment with a breast surgeon, a woman of refreshingly dry wit and a probably unwanted reputation as a celebrity surgeon—‘She did Kylie’, various acquaintances who keep abreast, so to speak, of such things inform me. I’m more interested in how good she is at cutting out and sewing. She reassures me that the lumps in my breast are so small and so close to the muscles on the chest wall that I would never have found them; she can’t feel them herself, even with guidance from the mammograms. It’s another piece of bad luck that the tumours are on the left breast, and I am left-handed and tend to sleep on my left side. A treatment plan is outlined, appointments are made, and I’m handed brochures, booklets and hospital admission forms.

Suddenly my life is being run by this disease. It’s called being ‘on the journey’ in most of the material I’m given, but it’s not a trip I ever planned to make. It’s not a trip any woman would want to make. The surgeon’s advice is to tell family and friends straightaway, and to be prepared for the fact that people will react differently. Some send flowers and cards, some distance themselves as if I might be contagious, some deliver a much needed hit of humour: ‘Well aren’t you just the fuckin’ little attention seeker?’ says an old friend, who will never fail to phone or email every few days over the next six months, and who takes me out for coffee and lunch when I’m up to it.

The support literature is informative but often cloying. And it gives breast-beating a whole new meaning. Do I really want to go to a weekly support group? Won’t everyone be talking about the same thing? I don’t want to be defined by this disease. I have a sudden, ghastly recollection of mothers’ group gatherings at which there seemed always to be a competition for who had the most difficult labour, the worst hospital experience, but of course the best baby.

Well-meaning friends begin sending me those annoying email chain letters that link to breast cancer websites, many of which are owned by American companies such as CharityUSA.com, which lumps breast cancer support in with child health, animal rescue, saving rainforests and improving global literacy. ‘Please tell ten friends to tell ten today! The Breast Cancer site is having trouble getting enough people to click on their site daily to meet their quota of donating at least one free mammogram a day to an underprivileged woman.’ (Mammograms are performed free of charge in Australia for women aged fifty and over.) The main purpose of many of these sites is to link you with advertisers and sponsors. You can shop online at the Breast Cancer Site Store for such essential items as an Angels Watching over You Pink Titanium Ring, or a pair of Pink Ribbon Plaid Flannel Lounge Pants, a cosy pair of Quilted Faux Suede Pink Ribbon Ugg Boots, and even a Real Men Wear Pink badge—‘a handsome way to show support’. I could just about deck out myself and my husband in head to toe pink-ribbon gear.

Some leading Australian designers are in on the act, too, through the Fashion Targets Breast Cancer range put out by the likes of Collette Dinnigan, sass & bide and Easton Pearson. They donate 25 per cent of the recommended retail price ‘directly to the community-funded National Breast Cancer Foundation’, which also has a link to the ACCC’s Scamwatch site to ensure you don’t pick up the wrong pink products.

I find myself being swamped by a pink tide in shops and supermarket aisles. I’ve always hated the colour pink: pink caps on bottled water, pink wraps on biscuits, pink bottles of shampoo and hairspray, pink boxes of breath mints, pink knickers, pink teddies, and of course the ubiquitous pink lapel ribbons. The proportion of the purchase price that goes towards funding research and treatment is often minimal, as little as 5 per cent, but the seductive feel-good effect of buying these products must be an advertiser’s dream. Being a ‘National Breast Cancer Foundation Corporate Sponsor’ presumably has many benefits, including tickets to the cricket. Breast cancer is big business—big marketing business—spurred along recently by some high-profile and glamorous victims, not all of whom have survived. I google breast cancer and get more than 62 million entries; pros- tate cancer brings up less than one-third of that number. Bad luck, guys. Lung cancer, which kills slightly more women in Australia than breast cancer, rates only 19 million entries, mesothelioma only 5 million, and bowel cancer only 3 million. And what are the awareness lapel ribbon colours for these various diseases? Does anybody know or care? I find an ‘Awareness Ribbons Colours and Meanings’ website and discover that pink ribbons are for breast cancer, birth parents, cleft palate and nursing mothers; hot pink is for inflammatory breast cancer. It’s hot pink that saturates the Sydney Cricket Ground, including the players and the commentators, during the summer test matches. The florid display begins to oppress and annoy me, even though I know it’s ‘for a good cause’. Perhaps next year the hot pink suits and caps should be replaced by light blue (prostate cancer) or violet (testicular cancer), or go right out on a limb with purple and black (paranormal awareness) or the striped orange, blue-green, purple and yellow ribbon for STD awareness. And we are not talking telephonically here, Warney.

I’m almost blinded by the sparkly breast cancer bling on the uniform of the nurse who prepares me for my first surgical procedures—the insertion of a hookwire through the tumour area, which will assist the surgeon and her scalpel, followed by a mammogram. Both procedures are eye wateringly painful, and it’s hard not to flinch. I resolve to punch the next person who cheerfully informs me that ‘this needle might just sting a bit as it goes in’. The nurse twists my long hair up and out of the way of the metal plates flattening my pierced breast, inserted hookwire poking out, and asks if I’ll be having chemotherapy.

People keep telling me how lucky I am that the cancer has been detected early, but I don’t feel lucky. Why me? I keep asking myself. I’ve never smoked, I breastfed both of my children for at least a year, I’ve never taken hormone replacement therapy and I’m not overweight. There is some family history of the disease, but it’s indirect and a generation back. My English aunt had a mastectomy in her mid seventies and had been in remission for over five years before the cancer reappeared near the base of her spine. She begins chemotherapy about the time I have surgery, and after the first treatment she buys herself a fetching blond wig in preparation. Her phone calls from Nottingham are always cheering, and I take heart from the way she flirts with the doctors and continues with plans for her eightieth birthday party. My mother always knows what to say when she phones, and we repeat my father’s favourite saying each time: ‘Keep on keeping on’. My aunt is the first person my husband tells when the surgical procedure to remove several small lumps reveals that some of those busy little malignant cells might have taken themselves off to the lymph nodes in readiness for a joyride around my body.

Checking the cancer’s likely progress involves a state-of-the-art test called a sentinel node biopsy. I’m given three injections of radioactive dye around my left nipple by an honest nurse who assures me that the needles will hurt. She’s quick and careful, and after the hookwire procedure I’m ready for anything. But I’m disappointed to discover that I won’t glow in the dark overnight. The following morning, under the bliss of general anaesthetic, a Geiger counter is inserted into an incision in my left armpit to identify which nodes have taken up the radioactive dye first. These are removed and sent for biopsies. I’m left with two bandaged areas that bruise as if I have been kicked in the armpit by a horse, but it’s preferable to having a major clear-out of lymph nodes ‘just in case’, which used to be the procedure.

It’s the waiting for test results that wears me down. Surgery and the recovery period I can deal with—there’s a sense of achievement afterwards. My surgeon seems to have connections in the pathology labs, however, and my sentinel node biopsy results are back within days. Finally, some good news. The lymph nodes are clear. I break the news gently to my hairdresser, with whom I have discussed the prospects of chemotherapy and a smart short haircut if the news had been bad. He hugs me anyway, and takes special care with the colour and cut—not a word about trying a different style.

What I haven’t escaped is six weeks of radiotherapy, five days a week, at the egregiously named Tattersall’s Cancer Centre. Surely there should be a limit to the application of naming rights? Tatts me out of here. At least George Cole Adams is wearing a hat in the sign over the door, as are many of the chemotherapy patients I will see each day in the waiting room. Now, when I notice a person in the street wearing a close-fitting hat, I wonder if they are part-way through a course of treatment for cancer. I become a little self-conscious about my thick, long hair—it seems ostentatious in this environment. A friend jokingly reassures me that people will think I’m wearing a wig. The waiting room is quite comfortable, apart from the relentless blare of daytime television; I haven’t been so well-informed about celebrity gossip since I was at university. There is a puzzle table and a stack of 1000-piece jigsaws. Hard ones with lots of sky and clouds and gumtrees. A dedicated group of blokes, being treated for prostate cancer, like to work together on them. The shelf of books sits undisturbed, but then who would really want to get started on a boxed set of Jeffrey Archers? Although that’s about the level of my concentration. It’s the mid afternoon that is my undoing—a sandbag-to-the-back-of-the-skull tiredness hits most days, about a week into the treatment. My daughter decides that I’ve temporarily become an old lady: vague, sleepy and forgetful.

For the surgical procedures I had mammograms and X-rays. For the radiotherapy there are photographs: a mug shot for the cover of my folder, and a series of photographs of my left breast from various angles. Two radiotherapists bob around me as I lie on my back on a raised bench, my arms crossed above my head, naked from the waist up. Positional points are measured and recorded, and six tiny black dots are tattooed onto my chest to ensure the radiotherapy beams will target a specific area and avoid my heart and my lower left lung. Any lung damage will be permanent and might cause asthma to develop. More needles, but my son and daughter are impressed when they learn I’ve been ‘inked’. My left breast has a crazy spider web of black texta directional lines on it by the time the radio- therapists are done. The lines will be redrawn each day before treatment. I try to jolly things along a little by asking whether any of the photographs might find their way onto YouTube. There may well be a note in my file that reads ‘smart alec’, but I prefer to think the staff appreciate a bit of levity as they go about their business. The chemotherapy patients are also treated here, some so weak they are wheeled in on hospital beds, PICC (peripherally inserted central catheter) lines at the ready. We are all identifiable by our stages of undress under our treatment robes: bare legs means prostate cancer, bare chest means breast cancer, shaved head means tumour.

What, in the beginning, seems like an endless stretch of treatment moves along steadily. I get quite good at positioning myself exactly on the bench in the treatment room—left arm over right, above my head, straight spine despite my tendency to lean to the left, legs relaxed, knees slightly bent and feet resting to the sides. There is to be no shaving of my left armpit, and no wearing of deodorant or perfume anywhere near the treatment area. I console myself with attending to my right armpit only, and hope the radiotherapists will take this as evidence of my scrupulous attention to personal hygiene.

In the treatment room the wood panelling, carpeting and subdued lighting, and the mellow soundtrack of Nora Jones, K.D. Lang, Crowded House and Frank Sinatra seem more suited to a five-star hotel lounge, but it all takes my mind off what is actually being done to me, and the fact that I am shut in behind heavy metal doors. The radiotherapists, the nurses and the receptionists are cheerful and thoughtful. Somehow, within a day or two everyone I deal with there has learnt my name and can even pronounce it properly—all of which makes me feel welcome in a place I don’t want to be visiting. I am given my own locker and robe, and a little jar of sorbolene cream to apply to skin that is gradually reddening and blistering within defined lines, like a strange square of sunburn. It’s a peculiar sensation of heat that seems to burn from deep under the skin.

The daily ink markings and cream applications are messy, and I’m reduced to wearing old black cotton T-shirts and an unpadded bra with the underwiring chopped out. Buying a couple of soft, unwired bras proves a challenge; assistants in lingerie shops are puzzled as to why I am not attempting to make the most of my limited assets, until I explain. They are usually mortified, yet surely I’m not the only woman who has had to make such a purchase and for such a reason?

Days pass. Patients finishing treatment farewell the staff with cards and gifts, and I’m reminded of the peculiarly intense relationship that can form between an author and an editor working on a manuscript in a designated time. I wonder if anyone feels bereft once they leave the daily routine, and the familiar faces, especially those patients not surrounded by a tight network of family and friends. The standard farewell from the staff is, ‘We hope we won’t ever have to see you again.’ I say the same to them on my last morning as I hand over a huge hamper of chocolates and my patient parking card in return for my account. Although I’ll be back for regular check- ups over the next few years, I’m out of there.

The medical oncologist who will supervise my medications for the next five years orders tests for bone density and vitamin D levels. Both are abnormally low; the latter apparently a common symptom in breast cancer patients. He suggests vitamin supplements, lots of smoked salmon, avoiding anything that might result in bone fractures, and more time in direct sunlight, less in front of the computer. I throw caution and blockout to the wind, put away my lovely new bicycle, and take up sunbathing for thirty minutes each morning. The daily dose of Tamoxifen to starve the hormone receptors on my cancer cells produces none of the long list of side effects about which I have been warned.

The fog of tiredness lifts after a couple of months, and the peculiar square of sunburn over my left breast fades; in time, so will the surgical scars. I know I’m probably one of the lucky ones—my cancer was detected and treated early. And although the number of women diagnosed with breast cancer in Australia has more than doubled in the last twenty-five years, the death rate is falling, owing to early detection and treatment. Funds pour into breast cancer research. But after what I’ve been through, I feel I now have the right to say NO to all things pink. I donate directly to the Cancer Council of Australia and the Peter MacCallum Cancer Centre. That way, I know where all the money goes.

Copyright Bryony Cosgrove 2011