Every single day once I open my eyes, my imaginative and prescient bobs between my bed room and the horizon of sheets which have crept up the mattress within the night time. Because of secondary breast most cancers, I’m paralysed from the waist down, and might’t drag myself up within the mattress, so I stay slumped, inside and outdoors the day. Once I use the distant management on my hospital mattress to sit down my again up, I slide down within the mattress and my paralysed ft press in opposition to the mattress finish. I can’t belief myself to repair it, so I stay half below the sheets, ready for my husband, mom or carers to return and launch me.
Secondary breast most cancers is the unhealthy one – the one you die of. The general public image of breast most cancers is the first model – the one you’ll be able to probably be cured of, if you happen to’re keen to undergo a mastectomy, radiation and chemotherapy. The general public image of breast most cancers suggests that girls who’ve been subjected to this ‘slash, burn, poison’ mannequin of remedy ought to take into account themselves survivors. But breast most cancers can come again as Stage 4 at any time in a girl’s life, and secondary breast most cancers (SBC) is incurable. Relying on the kind of breast most cancers – there are no less than 4 subtypes – a secondary breast-cancer affected person is on chemotherapy, immunotherapy or hormone remedy for the remainder of their shortened lives, and remedy is life-altering for nearly all SBC sufferers.
I’m one of many unfortunate ones. In January 2022, I awakened one morning and couldn’t raise my leg. We received me into hospital, dragging my proper leg like a reluctant schoolchild, and shortly found I had spinal tumours, in an unusual location contained in the spinal wire. A number of days later, I misplaced feeling in my left leg, which turned out to be from a separate spinal tumour. I had radiation remedy which I used to be informed might stabilise the tumour. However the nerve harm on my spinal wire was unlikely to enhance, and I used to be informed I’d in all probability by no means stroll once more.
Not with the ability to stroll means a whole lack of independence. It dashes any hope I’ve had for a interval of respite by which I would journey, go to work, and even meet with buddies. It’s pressured me to just accept that I’ll, nearly positively, not see my dwelling nation, Australia, ever once more. I’ve spent many of the previous decade travelling overseas and much away from the Antipodes, and it was this adventurous life that I assumed I’d miss probably the most. But it surely seems to be the severing of my ties to dwelling, to the spare sound of the morning magpie and the smoky odor of fallen eucalyptus, that feels bodily insufferable.
They don’t inform you about everlasting paralysis at SBC Breast Most cancers camp, the place the emphasis is commonly on ‘thriving’ with a terminal illness. They don’t inform you about liver failure or lung illness, which might make the final months of many sufferers’ lives nearly insufferable. Then once more, SBC is sneaky and has the power to shape-shift and emerge malevolently in sudden locations. Apart from paralysis, I’ve a tumour in my left eye that has induced a retinal tear that makes it arduous to see. Girls I do know have bladder tumours, bowel tumours, and all method of bony tumours that have an effect on their mobility. After which there’s every SBC affected person’s biggest worry: mind metastases, which might trigger neurological signs resembling seizures, palsy, and sensory alterations.
All of this exposes the lie of efforts by mainstream charities to glamorise breast most cancers – to rejoice ‘survivors’ with a barrage of pink merchandise, pink-themed occasions, and pink-ribbon fundraising. It’s a automobile for the promotion of heteronormative femininity, one which’s largely about being pleasing, engaging and sexualised for the good thing about others. I discover little widespread floor right here with the visceral actuality of what I’m going via. As an individual with most cancers, I usually really feel stripped of the layers of different identities that I’ve casually worn for years. Now I’m swaddled with different labels – a affected person, a girl, a sufferer, a survivor.
But protecting me firm on this tough highway are a gaggle of feminist theorists who suffered via, thought with, and ultimately died from breast most cancers. Each Audre Lorde and Eve Kosofsky Sedgwick uncovered most cancers as one thing basically discursive, dominated by the same old discriminatory and unique classes of gender and race. They’ve guided me via among the unexpectedly radical, gender-fluid and contradictory dimensions of residing with breast most cancers. On the one hand it’s all ‘pink positivity’; but, on the opposite, it may contain years of interventions that trigger havoc with our hormones, make us lose our breasts and hair, and in any other case disrupt most of the typical markers of gender. These two opposing pressures – to carry out an excessive form of femininity and to be pressured to bother it in my very own physique – have been an important side of my very own expertise. Whereas I would really feel powerless within the face of how this illness is undoing me, Lorde and Sedgwick have granted me a measure of solace – a way of energy, and a method to withstand the political endowments of my situation.
The pink ribbon itself is most carefully related to the Susan G Komen basis – the biggest breast most cancers consciousness charity in the USA, which hosts the Susan G Komen Race for the Remedy yearly. Based in 1982 and named for the founder’s sister who died of SBC, the organisation in a short time grew to become probably the most highly effective within the breast most cancers group. It spearheads the pink-ribbon campaigns of October, the designated ‘Breast Most cancers Consciousness Month’, hosts massive charity galas, and has greater than 200 company sponsors.
Komen was not the origin of the breast most cancers motion; that was arguably within the ‘ladies’s well being’ motion of the Seventies, a department of feminist activism that sought to struggle the medical institution’s disregard for girls’s well being points (probably the most well-known output of that is the book Our Our bodies, Ourselves, first printed by the Boston Lady’s Well being Collective in 1970). The ladies’s well being motion was much more radical than Komen and its offshoots. Fairly than give attention to optimistic survivorship, it emphasised how the medical occupation ignored ladies and, particularly, didn’t try for a treatment or much less interventionist and traumatic remedies. The emergence of charities resembling Komen, the Estée Lauder Breast Most cancers Marketing campaign, or the Ralph Lauren Pink Pony marketing campaign arguably signify not solely the corporatisation but in addition the feminisation of the breast most cancers motion. As Barbara Ehrenreich has written in Smile or Die (2009), her memoir and critique of breast most cancers discourse: ‘Everybody agrees that breast most cancers is an opportunity for inventive self-transformation – a makeover alternative, in reality.’
Transmen are more and more presenting at medical doctors’ surgical procedures with lumps that should be investigated
The best way the mainstream breast most cancers motion has aestheticised the illness goes hand in hand with social stress to carry out heteronormative womanhood. Nowhere is that this extra evident than within the charity Look Good Really feel Higher: based within the late Eighties, it presents ladies with breast most cancers a free makeover (with merchandise donated by cosmetics firms) which features a class to show them how one can make up their chemo-ravaged faces. In different charitable efforts, pink glitter is sprinkled on vehicles, on yogurt pots, on bras, T-shirts and scarves. Conventionally engaging fashions and celebrities put on Ralph Lauren’s Pink Pony sweatshirts and generally even strip all the way down to their underwear to encourage ladies to ‘examine your boobs’ for lumps. Corporations investing in pink-ribbon tradition are hardly ever clear about the place their cash goes, as a result of it will reveal how little of it goes to analysis versus limitless consciousness campaigns. For instance, Yoplait, which ran a pink-ribbon marketing campaign every October from 1998 to 2016, donated simply 10 cents for every pink lid that buyers mailed again to the corporate. Because the medical author Gayle Sulik despairs in Pink Ribbon Blues (2011): ‘billions of {dollars} are siphoned into branding efforts as an alternative of the prevention and eradication of illness.’ Komen presently donates lower than 20 per cent of the cash it raises to analysis, and a big proportion is poured again into prices associated to fundraising, thus current to perpetuate itself.
This pink positivity is clearly extremely gendered, focusing nearly solely on those that determine as ladies. That is even supposing a small variety of males get breast most cancers, whereas transmen are more and more presenting at medical doctors’ surgical procedures with lumps that should be investigated. Certainly, breast most cancers, and the expertise of remedy, opens up an array of potential genderqueer identities. One would possibly even argue that the guts of pink-ribbon tradition is the demand to carry out upbeat, cheerful and engaging femininity, even when shorn of 1’s breasts, exactly in order to shut off the genderqueer potentialities it in any other case raises.
Even the emphasis on ‘checking your breasts’ exposes the bias of pink-ribbon most cancers tradition. It is a crucial, albeit scientifically controversial, message; it may additionally distract from consciousness of different signs in different, much less overtly ‘feminine’ elements of the physique, particularly of Stage 4 breast most cancers. The primary symptom of my very own most cancers was redness – not a lump – on the pores and skin of my breast. This was 2019 and I used to be 35 years outdated. The next yr, I began having chest pains, although they disappeared and it’s not clear in the event that they have been associated to the most cancers. However a later scan revealed a mass on my lungs, which turned out to be metastases.
Within the breast most cancers affected person group, there’s appreciable dialogue of femininity, womanhood and its loss. I messaged and spoke to some fellow members of METUPUK, the breast most cancers advocacy group I belong to, about how their remedy did or didn’t relate to any sense of femininity. Meg was one of many first to reply (all names have been modified out of respect for correspondents’ anonymity) and her WhatsApp reply was one of many starkest: ‘Being bald I felt like an “it” (with) no gender.’ Seeing their feminine identification via the prism of their look was a typical theme; baldness was steadily raised as a supply of grief, as was something to do with breast surgical procedure. ‘I had my mastectomy in 2016 and nonetheless not had my reconstruction,’ Anna wrote to me, ‘it made me lower than a girl, having a flat facet and never with the ability to put on a T-shirt or perhaps a V-neck costume … with out placing in a softy [prosthetic]!’
It’s notable that Anna mentioned she grew to become ‘lower than a girl’ – not simply that she felt much less like one. For a lot of ladies, our remedy chips away on the gender identification we now have rigorously constructed up over the course of our lives. Most girls must take hormones for years after main remedy, and doubtlessly indefinitely if they’ve hormone-positive Stage 4 breast most cancers. This usually includes a deliberate shutdown of the ovaries by month-to-month injections of both Zoladex (a luteinising hormone blocker) or Lupron (a gonadotropin-releasing hormone agonist), which might mimic menopause in premenopausal ladies; an aromatase inhibitor, which additional lowers the oestrogen ranges in postmenopausal ladies; and for Stage 4 ladies, new lessons of blockers resembling CDK4/6 inhibitors (which goal not hormones however proteins in breast most cancers cells) and selective oestrogen receptor degraders (SERDs). This melange of remedies basically works to make oestrogen ranges as little as attainable in order to not feed hormone-dependent cancers. On condition that round 70 per cent of breast cancers are hormone dependent, that’s a lot of ladies grappling with the bodily and psychological results of profoundly altered hormones.
One consequence is a change in libido and the bodily capability to have intercourse. Meg wrote to me about her vagina turning into ‘the Gobi desert’, and a few of us swapped ideas for oestrogen-free lubricants in our WhatsApp group. Cheryl mentioned: ‘I fell out of affection with intercourse after the first prognosis … I really feel completely nothing.’ Such emotions recommend a psychological as a lot as a bodily change. A placing level was how most of the respondents assumed that I meant intercourse and intimacy once I requested about how breast most cancers affected their gender identification. Femininity and intercourse are so carefully intertwined in public tradition that sexual intimacy is the place many imagine their identification is to be discovered, and broken.
Pink femininity must be so seen exactly as a result of it’s so unstable and weak
But this brings with it sure genderqueer potentialities. Molly noticed that trans and different gender-nonconforming individuals get breast most cancers too, but they’re excluded from pink-ribbon tradition. She had a buddy assigned feminine at start who was transitioning to male, however his mom wished him to carry off on all hormone remedy till he was 21 due to a household historical past of breast most cancers. Nonetheless, it could be that some hormone remedies prescribed throughout transition might lower breast most cancers threat. Among the laundry listing of hormone remedies for breast most cancers are the identical as medication taken throughout transition – most notably Lupron, which can be utilized as a puberty blocker in kids in addition to adults, and aromatase inhibitors, generally given for so-called ‘precocious puberty’. There may be so little analysis achieved to this point on transgender people and breast most cancers; one hopes there shall be extra quickly.
Molly discovered it hopeful, although, that the elevated visibility of transmen and transwomen was encouraging extra acceptance of fluid gender identities, and that genderqueer individuals have been ever extra welcome in grassroots breast most cancers teams. Maybe there are seeds of hope for a genuinely queerer breast most cancers tradition, which could see with higher readability what a patriarchal medical institution has elected to miss.
Cracking open the affiliation of breast most cancers with organic womanhood can reveal different intersectional identities, particularly the cross-pollination of gendered and racial selves. Sara, from METUPUK, wrote to me: ‘I’m from an ethnic group. That’s the worst factor, individuals from our group have a look at you and really feel pity for you, [the] worst factor goes to an Asian marriage ceremony when you’re recognized with most cancers.’ The expertise of breast most cancers sufferers from Black, Asian and different marginalised teams is never current in media portrayals, and though teams like Black Girls Rising exist to withstand this marginalisation, in mainstream breast most cancers tradition, there’s nonetheless solely a token effort to vary.
On this context, the frantic efficiency of pink femininity takes on a particular hue; it must be so seen exactly as a result of it’s so unstable and weak. Because the scholar Amy L Brandzel has written, the ‘anti-intersectionality’ of pink-ribbon tradition serves to shut off sufferers’ connections ‘to transgender embodiments, queered impacts, disabled communities’. Breast most cancers is a direct strike in opposition to stereotypic womanhood – with the hair loss that accompanies chemotherapy, the early menopause wrought by hormone remedies and, maybe most of all, the mastectomies, which contain a bodily and psychologically violent act. Confronted with this assault on normative femininity, pink positivity permits ladies to really feel they not solely retain womanhood, however that it has been augmented. Whereas these efforts are designed to point out that girls with breast most cancers are nonetheless wives, moms and lovers, the hassle that’s put into foregrounding the ‘female’ in breast most cancers charity and consciousness may very well be learn as a efficiency of a new femininity – a more true one than earlier than.
An uncommon variety of late-Twentieth-century feminist thinkers suffered and died from breast most cancers. Maybe probably the most well-known is Lorde, the poet whose book The Most cancers Journals (1980) nonetheless dis/comforts ladies residing with the illness. A slim quantity, it’s searingly trustworthy concerning the violence breast most cancers does to the varied veils that we in any other case conceal behind: gendered, but in addition racialised, sexualised identities. She writes:
For months now I’ve been wanting to put in writing a bit of that means phrases on most cancers because it impacts my life and my consciousness as a girl, a Black lesbian feminist mom lover poet all I’m [emphasis mine].
Lots of that means lies nested in these three phrases ‘all I’m’: they reveal the extent to which Lorde wrapped herself in each marginalised and generalised identities – a Black lesbian but in addition a lover and a poet. All these identities suffered from the invasion of most cancers into her life and her consciousness, however by itemizing ‘Black lesbian feminist’ first, Lorde emphasises how at odds with the breast most cancers expertise they’re.
Lorde’s reflections on the disorienting impact of most cancers could seem untethered from the bodily sides of remedy. However her different writings put the violence of surgical procedure entrance and centre, when she laments how the act of mastectomy untethers her from her femininity:
I imagine that socially sanctioned prosthesis is merely one other manner of protecting ladies with breast most cancers silent and separate from one another.
Lorde imagines a military of one-breasted Amazons marching to Congress and protesting the usage of carcinogenic brokers. She believed that environmental degradation was partially answerable for her most cancers, beliefs that linked her to the feminist environmental motion of the Seventies. Lorde is crucial of breast most cancers ‘positivity’, however her passages in opposition to mastectomy chime with different activists who tie the lack of a breast to a lack of female-ness. She reifies the connection between the girl and the breast, and cries loudly in opposition to the try to interrupt that relationship. The therapeutic she experiences afterwards is wrapped up in her sense of womanhood. She describes the group of ladies in her life, together with her companion, who rushed to assist her when she was recovering from the mastectomy: ‘Maybe I can say this all extra merely; I say the love of ladies healed me.’ Sisterhood and solidarity are central to Lorde’s understanding of womanhood, and her restoration extra particularly.
Sedgwick provides us a approach to assume that’s fairly completely different to the heteronormative, pink-ribbon platitudes
Lorde’s worry of the damaged relationship between lady and breast is echoed within the writings of Sedgwick, the feminist and queer concept scholar who additionally lived with and ultimately died from secondary breast most cancers. Sedgwick is taken into account one of many founders of queer concept, and labelled her personal expertise of most cancers ‘an journey in utilized deconstruction’. For her, queer concept’s emphasis on ambivalences, penumbrae, erasures and fracturing helped her probe her personal psychological responses to the illness. ‘I’ve by no means felt much less stability in my gender, age and racial identities,’ she wrote, calling her personal technique of remedy a ‘dizzying array of gender challenges and experiments’. Her response was in some ways typical – she mourned the violent interventions that produced the bald head, the shortage of breasts, the lacking eyelashes – however she additionally thought-about herself fortunate to have the crutch of queer concept to see her via. As she wrote in Tendencies (1993), Sedgwick coped by ‘hurling my energies … to the very farthest of the unfastened ends the place illustration, identification, gender, sexuality, and the physique can’t be made to line up neatly collectively.’
Her career-long infatuation with queerness (she was, herself, in a protracted heterosexual marriage, an irony that didn’t escape her) helped her in no less than one different manner. Within the Nineteen Nineties, the identical decade by which she was recognized, it was arduous to consider incurable sickness with out considering of the AIDS epidemic. Breast most cancers and AIDS activism had been linked earlier than: the AIDS Coalition to Unleash Energy (ACT UP) was the inspiration for teams resembling Breast Most cancers Motion, based in 1990. Breast Most cancers Motion refused to supply the depoliticised materials that got here out of mainstream teams like Komen, and targeted as an alternative on lobbying for extra analysis and probing into the causes of breast most cancers. This additionally linked sure corners of the breast most cancers motion with the environmental motion, as activists targeted on attainable carcinogenic chemical substances and pollution.
Sedgwick’s involvement with ACT UP predated her most cancers, and on the time she was recognized she was deeply concerned in establishing an area chapter and offering emotional assist for a distant, dying and pricey buddy with AIDS. After her prognosis, she deepened her desirous about AIDS and the position of incurable sickness within the fashioning of late-Twentieth-century identities. She was , she later wrote, within the ‘dialectical epistemology of the 2 illnesses, too – the sorts of secret every has constituted; the sorts of outness every has required and impressed – [this] has made an intimate motive for me.’
She understood herself to dwell at a degree in historical past and in a manner that pressured an intimate affiliation with early dying: not just for these in a queer milieu, but in addition for city ladies of color, pressured to the brink and past by poverty, violence and state indifference. When plagued with the inevitable ‘Why me?’ query, Sedgwick provides us a manner to consider a solution that’s fairly completely different to the heteronormative, pink-ribbon platitudes.
If a queerer, extra radical type of breast most cancers activism is to be impressed by ACT UP, it is smart for it to give attention to bettering entry to medication and accelerating analysis right into a treatment. And any analysis right into a treatment has to start out with the individuals really dying of the illness – ladies with Stage 4 breast most cancers – fairly than targeted purely on prevention. That is what the organisation I’m concerned with, METUPUK, seeks to do, and is joined within the US by the likes of Breast Most cancers Motion and METAvivor. All work to lift consciousness of the plight of ladies dying of SBC and of elevating funds for and selling analysis into SBC – versus main most cancers, which tends to have higher outcomes and is subsequently extra profitable. These SBC teams are vocal critics of the pinkwashing that occurs in October and all year long, and search to offer another for individuals (be they lady, man or nonbinary) who’re offended concerning the statistics and wish to see change. That is the pressing, important work that does certainly get me away from bed. It additionally evokes me as I attempt to get better from my spinal accidents. And one thing could also be working – as a result of, reader, I can wiggle my toes.
Philippa Hetherington died on 5 November 2022. Her household invite you to make a donation to METUPUK here.
