Today’s rant is triggered by seeing yet another photo of what it is to Have Cancer.
You see it all the time. mostly retweeted, or on facebook, or on instagram. the Brave Cancer Hero. the image of the Brave Cancer Hero is remarkably similar despite the extreme differences in how the many manifestations of disease react in people’s bodies. but the Brave Cancer Hero is pale, and in a hospital or medical setting. they are wearing a hospital robe, and they are smiling. it is preferable if they are thin, preferable if they are visibly unwell, and preferable if there’s a subheading about how they are dying, or young.
This image of cancer is something, during 6 months of treatment, i have never seen. when i was hospitalised, most of the patients in my ward were dressed during the day. i dressed every single day; not because i am courageous, but because sitting around in those goddamn white hospital robes is gross and uncomfortable and people can see your bum when you have to go to the toilet. i was NOT grossly ill for my first lot of treatment, and was only placed in hospital in order to monitor me in case of a manic episode. however, the two people who shared the room with me were ill. very ill. and they both dressed every day.
in the chemotherapy day ward, there are one or two patients lying down – usually those being catheterised – and the rest sitting in chairs, in their street clothing. before starting treatment, the most awesome image i saw was of this fantastic, sharply dressed woman in heels and jeans and bright lipstick and a bald head sitting in day ward, looking straight at the camera. cancer looks like that too. cancer looks like the woman in her 60’s who runs a farm, and comes in from the country to get chemo. or cancer looks like pregnant woman, looking exhausted but getting in, getting chemo, and going home. cancer looks like a woman i ran into coming out of a cafe, with a hat hiding her hair, and neatly drawn on eyebrows, and a smashing dress. cancer looks like me on a lazy day at home in jeans and a tshirt, or a fancy grey coat thrown over the top.
i am ok with people drawing strength from metaphors i find distasteful – as long as that language is not applied to me, it’s fine. but the images? i take that personally. it is not the cancer patients drawing this image of our lives. it is the hunger for cancer to be ‘othered’. for cancer patients to LOOK ill, to be obvious. to be marked, to define the non-cancer patient as something distinctly different.
the honest truth is, cancer looks like a healthy person almost all of the time. possibly what brings this home the most to me was my first exposure to the heartbreaking complexities of illness and medicine: the woman in the hospital bed next to me when i was getting my first treatment. she was so ill she was there just for diagnostic work – all of mine was done in scan clinics, because i was fine. she was very, very ill, and they poked and prodded every bit of her they could. scan after scan, biopsy after biopsy, and the good ol’ PET scan. they had mixed her chemotherapy, and were going to start treating her for an unknown primary. the day she was due to start, all the results were in, and there was not one bit of evidence that she had cancer. weeks and weeks of being in hospital, being told she had cancer because she was ill. she looked ill. i did not. her blood tests showed there was something seriously wrong, while mine were fine, with the exception of the highly specific tests which would never have been ordered as standard. though i’m sure her image would have made a better idea of cancer, it was me.
that photo was taken on day two of chemotherapy in hospital. this is my image of cancer.
that photo was taken about 3 months into chemotherapy. i’m in the new day ward here, and you can see the cord with the chemo going into me.
here i am with some goats. at this point, i’ve had 11 cycles of chemotherapy. i still have 6 tumours in my liver. one of them is still located in the most risky part, over arteries and the bile duct. one of them is smaller, but it is still 7.5 cm, and i am still very, very lucky to be alive. my blood tests are completely normal. i am probably healthier than most people. i flew this trip, i walked huge amounts, and i ate oysters. i am a bad cancer patient.
and this is a few days old. this is how i look now. this is me, 12 cycles of chemotherapy down. i’ve gained almost 10kg since diagnosis because i no longer vomit several times a week. i am starting training at the gym three times a week from next week, to get me ready, if not just mentally, for the gruelling months of surgery. my liver should be impaired from this much chemo, but it seems fine. it got easier with each session.
soon – very soon – i am not going to look like this. soon, i am going to be a proper cancer patient, pale and sick and probably a gross shade of yellow. i am going to be a little shadow, unable to get around. and goddamn it, i am going to wear clothes. i refuse to be that pale bravely smiling hero. i will stare down that camera. i will not compromise.
documenting how i look throughout the process – my #cancerselfies – has made me feel less shitty about the image of cancer. it has reminded me that this image is a lie. you can look and feel and seem healthy, and yet be terminally ill. cancer hides very well, and it is very, very scary. the image of the pale sick cancer hero makes us feel like that could never be us. but that is not what cancer looks like, for the majority of the time.
living with cancer for me is going to cafes, and getting annoyed when my coffee is late because the staff are run off their feet and the owner should have put more people on. it’s waiting in the car and checking instagram while my partner gets car parks. it’s listening to a Matthew Evens podcast, and discussing politics on twitter. cancer is cleaning up my couch because i am a goddamn slob. it’s trying to read Riders in the Chariot, and knowing it WILL get easier, but sometimes Patrick White is sluggish. it’s my word documents with essays in them, because i’m trying to develop a writing practice outside my blog.
cancer is also freaking out because my arm hurts, and i wonder if it means there’s more cancer in my lymph nodes. it’s picking up scans on CD’s from imaging places, and cringing from the weird twitches of pain in my right hand side, which i am pretty sure are just my liver reacting to tumour shrinkage, but could be them growing again. it is living with a body that has ceased to function in a way which will help me live longer, and having to intervene with aggressive, intense treatments and management techniques to try and keep as many organs functioning well enough to keep me alive for as long as possible. but there’s more trying to finish my knitted jumper, and sitting on twitter, or trying to manage my facebook habit, or getting really angry at smug & arrogant twitter accounts than there is Dealing With Cancer now. the initial pain, shock and challenge wore off long ago, and now it is normal. now it is ok. now it’s nothing to be afraid of, it is just how i live for now. and possibly forever, but no one actually knows.
cancer is a long haul for those of us lucky enough to not die soon after diagnosis. i count myself exceptionally lucky right now as the signs indicate my particular blend of bowel cancer is treatment respondent, and is thus more likely than not to stay so, with regular doses of chemo and adjunct chemo drugs. i will get used to the pain and the scars of abdominal surgery. i will get used to the ileostomy.
i think i will take, and post photos of myself when i am the Brave Pale Sick cancer hero, dressed in a stiff hospital gown, cords dripping from my abdomen, if not just to celebrate my being alive after the resection. but there’s no gentle weak battle smile. i will face that camera, and i will stare it down again.