#G I R L vs C A N C E R: MAMMOIRS OF INVASIVE DUCTAL BREAST CARCINOMA
THE COME UNDONE
Photography by Alex Cameron
Now then you ‘orrible lot. What the hell is occurring?
It’s been a good couple-o months since I got my blog on hasn’t it eh? And wowza what a crazy couple of months it’s been.
Not long after my last post I bounced about in Glasto fields, threw my first official #GIRLvsCANCER fundraiser and a gorgeous little ginger bundle of joy, namely my nephew Gryff Mahon-Phelan, landed into my life with a wallop. As did twenty-one rounds of tit-frying Radiotherapy fractions. Meh.
Before I began radiotherapy I was chill AF about it to be honest. Walk in the park compared to Chemo everyone said but let me tell you it’s more like walking through stinging nettles bare-legged mate. Yes it’s nowhere near as invasive but trust me, it’s taxing. Fatigue takes hold as the itty-bitty bod breaks down free-radicals and wreaks absolute havoc with my mood.
My body had literally nitto left to give and radiotherapy well and truly put the boot in. Exhausted, emotionally raw with what feels like every sodding emotion sat at the surface, I haven’t been in the right headspace to dissect and share something as heart-wrenching as my chemo experience. Until now.
Alex Cameron and I shot this piece way back in March at Artist Residence London a mere two days before my final chemo. I was determined to document the physical aftermath of chemotherapy in a way that was both raw and awing. Showcase my story so that I could glance back with pride not the trepidation or panic evoked by so many of the images of cancer we have unceremoniously shoved down our throats. Something beautiful. Something powerful. Gracefully undressing my experience. Piece by piece.
At this point in time I had my game face on and a solid warrior stance (a bit like a buffalo stance but with less ghetto gold). That’s how you handle chemotherapy you see, it’s a head down and power through job. No room to focus on exactly how hellish the whole thing is because you cannot break, simply bend around it a bit, it’s survival. Bear Grylls ain’t got fuck all on me.
Only now by writing about it am I beginning to process the emotional repercussions of this unkind but necessary treatment. How unimaginably ill I actually was and how incredible my body is to have withstood such trauma. Because despite how dreadful the undertaking, it saved my life.
So here goes…
Now, you’ll all have heard of chemotherapy but unless you’ve been up close and personal to the cretin that is cancer most folk won’t be aware of how the bastard thing works.
Chemo uses cytotoxic drugs to disrupt the way that crafty little cancer cells grow and divide. Type and grade aka how aggressive the cancer is will dictate the drug used and whether this will be combined with other treatments such as surgery, radiotherapy, hormone or biological therapies.
As my areolal affliction was ‘Grade 3‘ I was given four doses of the ‘red devil’ aka Epirubicin Cyclophosphamide (or EC as the kids are calling it) followed by four rounds of the demon that is Docetaxel. Owing to the tumour being of the HER2 variety my chemo was also combined with protein blocking baes Herceptin and Perjeta. Four fierce pharmaceuticals. Eight IV administrations.
Having what is essentially poison pumped into your anatomy is an extremely surreal and unique experience. Identical reclining chairs line a fluorescent lit room – some occupants of which sleep, others read or chatter to loved ones, a couple fidget consumed with fear. I always wanted to make like Morpheous and offer them a tab to take the edge off, except mine wasn’t red or green, it was a mini blue one by the name of Lorazepam. Hands down couldn’t have done chemo day without it.
It’s crazy how accustomed you become to the whole process too. Familiar faint salty taste of the saline flush, itchy snooter brought on by preliminary steroids and the incessant beeping of the portable drip devices. Something so unsettling suddenly becomes so routine. Becomes your reality.
My narcotics were administered every three weeks to allow my bod to recover from the short-term side-effects. Because in it’s quest to kill cancer cells chemo breaks down your healthy fast-dividing cells an’ all. Hence why you develop into such an incredibly poorly person at such a rapid rate.
Everything from your nail beds to your stomach lining are under attack, and although good cells will eventually repair whereas cancer cells perish, the damage it does is remarkably rough and unrelenting.
Being literally peeled apart from the inside out.
My oncology crew warned me that my barnet would begin to shed almost immediately as – fun fact – hair is the second fastest dividing cell in the body. Despite knowing this nothing, and I mean nothing, could have prepared me for the disturbing moment you see your body begin to dissolve.
I’d taken steps to ensure that the whole hair-loss process was as trauma free as poss. I cut my locks into a little pixie crop prior to chemo (big up Blue Tit for the trim) and endured the Siberian brute that is the ‘Cold Cap‘. Now the ‘Cold Cap‘ works by lowering the temperature of your lid, restricting blood flow and thus reducing the amount of hair-harming drugs reaching the follicles. Clever innit. And defo worth enduring epic brain freeze and a dodgy looking jockey cap for I’m sure you’ll agree. However with only a fifty percent success rate not everyone opts for the discomfort of donning a ‘Cold Cap‘ but being the cocky cow that I am I fancied my chances.
Two weeks after my first nuking whilst blissfully whiling away my afternoon getting my toes did at a local salon I ran my fingers through my hair and a few loose strands followed. Sure I was a little taken aback but no bother I thought, all part and parcel, I’ll just avoid brushing my bonce for a few days. I’d noticed some slight shedding during that time. A scattering of loose locks littering my pillow here and there. I remember thinking I’d gotten away with it. That I was bigger and badder than any chemo drug. That I had this pegged.
But later that week shit got very real. I decided to wash my hair; and watched wide-eyed as the contents of my scalp poured down my body toward the drain. I’ll never ever forget the feeling of sheer unadulterated panic, the shock inducing shrieks and shuddering sobs. I called out to Mummy Mahon as I helplessly watched the water pool around a plughole that was filling up with dead follicles. Convinced it was all gone. Frantically trying to rinse the evidence off of me. Terrified to touch my own head. Like a baby I sat in the tub trembling as Mother washed trails of tresses from my back, reassuring me that it wasn’t that much and presenting small fingerfulls as testimony. Mum later confessed that as she’d showered me with one hand she’d clawed away fistfuls of hair with the other. Stuffing them into the pockets of her dressing gown and PJ’s so that I wouldn’t have to bear witness to the full extent of my cranium catastrophe. That she’d cried to my Dad in the kitchen as she’d buried the mounds of her baby’s sodden hair in the bottom of the bin. We all felt shaken up that day. We were all afraid. Palpable proof that this cancer malarky was actually happening after all.
Luckily for me my locks grow in abundance so although I shed a shit load thanks to the ‘Cold Cap‘ I managed to keep hold of a hell of a lot. So much so in fact that I decided against braving the shave despite it being my initial POA for when alopecia kicked in. It would have been a way to regain some sense of control, a skinhead because I chose to be not because the c*nt that is cancer treatment dictated it. Although my tresses thinned dramatically into an odd fluffy texture I’d maintained a flimsy fringe which gave the illusion of a full head-o-hair beneath my bandanas. By mid chemo I was rocking a strong Friar Tuck style do (complete with shiny baldy atop my teeny pea-sized head) and I began waking to find that my pillow and the collar of my pyjamas weren’t as matted with malted mane as before. Honestly at one point my season’s must-have accessory was a ruddy lint roller fam!
Strange now to think that a few strands of hurrr at the front of my head acted as my salvation during one of the most traumatic episodes of my life. Silver linings eh.
Chemo induced hair loss isn’t all doom and gloom though gang, it does have some pretty epic perks too. Waving peace out to your pubes being a big one of them. Not gonna lie having a silky smooth Barbie-esque undercarriage twenty-four seven was fucking glorious, as was not having to shave my pins or pits for practically six months. My wise cancer surviving comrade Alice Purkiss once declared – ‘Mate there’s smooth, and then there’s chemo smooth’ – she weren’t wrong.
It took me a while to realise that my lashes and brows were on the bounce too to be honest, probs because I was distracted by the sorry state of my skin. Dried out and doing a very good impression of a Cullen my complexion was stale and see through like a beached bloody jellyfish. Sensitive and sore the palms of my hands and soles of my feet couldn’t put up with much pressure owing to knackered nerve endings; neither could my nails which became so brittle that even now will split under the slightest trace of friction. Bloating is another bullshit aesthetic side effect – ta muchly steroids. Before you can say Maris Piper your cheekbones give way to fluid retention and you’re taking a selfie of a potato where your face used to be.
Generally speaking I consider myself a strong individual. Resilient AF. But cor blimey when I had a reaction to my biological therapies I went downhill fast. Having never agonized over any kind of acne during my adolescence when a rash of bright red spots spread across my visage following my first ever dose of Perjeta I was dismayed. I attempted to cover it with maquillage which I rapidly had to remove due to irritation. Much to mine. Itchy white-headed horrors surrounded each and every one of my features causing eyes to stream and skin to crawl. I avoided Joe Public and hid indoors during those days, the double takes and second too long stares made me feel like a mutant and I wasn’t mentally psychologically stable enough to deal.
What you as observers won’t realise is that us cancer patients become accustomed to our new ‘look’ pretty sharpish. Used to seeing ourselves fade away bit by bit on a daily basis. We adapt to our altered appearance finding ways to feel more like ‘me’ in defiance of being defeated by the drugs. Soon it’s not the reflection in the mirror you begin to avoid it’s the look in others eyes reminding you exactly how sick you really are. Smiles painted on faces can’t hide the shock and sadness as they scan for traces of Lozza buried beneath the infirm slug-like shell stood in front of them.
And it’s those fearful looks that will live with me forever.
While the world is busy ogling your exterior deterioration what isn’t so easy to spot are the diverse ways in which the chemo drugs are corroding the bejayzus out of your insides an’ all.
In the days following my first chemo infusion my arm began to ache and feel fairly tight, I took no notice until the same thing happened after my second dose. And then some. Convinced I was in the early stages of a heart attack I hopped on the blower to my hospital’s hotline only to be told I had a common case of Phlebitis.
Bet you didn’t know that chemo could bugger up your veins did you? Nah me neither.
Appaz the ferocity of the drugs can create friction in the vein causing them to become irritated, sore and swollen. In this instance they had hardened too making it impossible to fully extend my arm as it was so sodding tight. Awesome.
In order to prevent the veins from collapsing completely my Dr decided I’d best get a PICC Line fitted. A long, thin central line that would be threaded up the vein in my arm and sit in the large vein atop my heart. Yeah I pulled that face too. Now, as somebody who was majorly worrisome when it came to needles prior to treatment, the prospect of having anything shoved up my vein was absolutely appalling. But with a little help from my pal Lorazepam and lots of local anesthetic thankfully it was a rapid, painless procedure. The most painful part of the entire thing was having to slog it up to the hospital every seven days to have the bad boy cleaned and preened. Long ting.
Don’t get me wrong as annoying as it was not being able to submerge in a bath properly for six months and having a constant reminder of chemo hanging out of your arm ‘Pete’ the PICC, as I lovingly named him, served a noble purpose. Gone were the days of being painfully prodded trying to find a poxy vein for cannula insertion or arms black and blue from attempts at extracting blood.
All that’s left of Pete now is a small scar on my inside of my upper left arm. A wee war wound acting as a reminder of that time I was pumped with poisonous pharmaceuticals. Seems silly but I often panic for a split second when I jump in the tub – shit I haven’t wrapped my arm in clingfilm!
Then I snigger as it dawns on me that there ain’t no need to be waterproof. Wally.
These are the days I always let myself soak a little longer.
I’ve forever been a bit of a night owl but there is a special place in hell for steroid induced insomnia.
For a couple of days pre and post chemo you are given some pretty potent steroids to pop. This is to help your bod power through, suppress sickness and reduce the risk of reaction to the drugs. Of course any substance that stimulates is OBVS going to hype you up a tad but OMFG was I alert. This coupled with menopausal-like hot flushes meant no amount of lavender oil infused baths or downloaded sounds of the sea could ease me in to the land of nod my friend. I was even double-dropping Kalms and downing Rescue Remedy to chill me the fuck out. Nish.
Twas those endless restless nights that I kept myself occupied with all things GIRLvsCANCER. Got my head stuck into a blog post or mapped out upcoming insta content. I’d jot down topics to discuss, catch up on correspondence or research ideas for shoots. Suppose I have a lot to thank the steroids for as it goes. Who’d have thunk it eh?! Fuelling the GIRLvsCANCER movement as well as my immune system. When all else failed though I turned to my old faithful, the Gossip Girl boxset. Perving on Chuck Bass til I ebbed into a blissful slumber.
As with most things in life what goes up must come down and it usually does so with an almighty thud. The emotional comedown from the ‘roids is something spesh. Irritable then anxious. Totes emosh then full-of-the-joys. A whole range of emotions in a sixty second turnaround. One minute you’re asking your sister to stroke your hair while you sob over the fact your clothes don’t fit anymore the next you want to knock her out for breathing. Literal ‘roid rage. Danny Dyer style.
Make no mistake fatigue will fuck with your mood like nobody’s business too. Cumulative effects of the chemo obliterating your white and red blood counts every three weeks wreaks absolute havoc with your energy levels and so the smallest of chores soon become insurmountable. I swear I had absolutely no idea what exhausted was until Cancer Related Fatigue kicked in and it can’t just be fixed with a cheeky nap and a Berocca. Oh no. It’s feeling as though your essence is slipping from your body and you could collapse into a puddle on the floor. It’s being so overwhelmingly weak that you get palpitations and feel positively peaky. It’s not ‘oh I need to lay down’ it’s ‘I have to be horizontal right now’ and no amount of rest can relieve it. Getting out of bed to nip to the loo or reaching for the remote completely burns you out. I remember at one point I’d ordered a pizza and by the second slice was too tired to take another bite. Too lethargic to chew?! WTF man!
Now any kind of sleep deprivation or prolonged tiredness will no doubt take its toll on your cognitive function but during chemo it’s next level. We’ve all been there haven’t we, the morning after a shoddy night’s sleep when you can’t quite think straight and are dopey as you like. Imagine that times a hundred thousand and you’ve got yourself a severe case of Chemo Brain. Although it sounds well jokes it’s absolutely crippling and one of the things I struggled with most. Not having the capacity to be myself. Not even a little bit. Not even at all.
I went from being a bird who would natter on at 100 MPH to being unable to finish a sentence. Some days simply smiling took more energy than I could muster which lets face it, is fucking soul destroying. I couldn’t keep up with conversations. Forgetting every other word. Busy places overpowered me and sketched me out – too many sounds and movements to make sense of. Concentration levels became non-existent. Pouring over the same page of a book umpteen times before giving up and going back to staring vacantly at the TV. An empty vessel.
That’s why having loved ones around is so super important during the throes of treatment. Someone to pass you a sarnie when you’re too drained to get to the kitchen or to sit and watch TV with you in silence. Because although you’re too tired to conversate you’re in desperate need of company. You’re lonely. The loneliest you’ve ever been in your life.
Right this section comes with an advanced warning kids. I’m about to get grim and graphic about some of the shittier side effects of chemotherapy. Literally.
So if you’re on the squeamish side or about to tuck into lunch I strongly suggest you leave now. Ready? Okay.
Unlike many of my chemo crew dem I was somehow spared the trauma of spewing my guts up. It’s one of the main and most upsetting side-effects of cytotoxic substances and yet although I fully expected it to, it never arrived. I’d often find myself feeling quite queasy but nothing that a quick anti-emetic and ginger tea couldn’t mend. Belter.
What I did struggle with however, was my digestive tract. Everything from my mouth to my, let’s say, south facing openings bore the brunt of chemo’s ferocious offensive on ones fast-dividing cells. Let me give you a run down from top to bottom. Pun totally intended.
As a female that thoroughly enjoys her food when my taste buds began to turn I was not impressed in the slightest. All my fave munch had a metallic flavour to it which made chowing down an almost impossible task. Trying to rack up five of my five-a-day was a nightmare too as anything even somewhat acidic set my tongue aflame. Fruit juices and smoothies? No-can-do. On the odd days my gob got all dry and shizz I’d rinse with lemon and lime water, a desperate bid to rid the furry underside-of-a-dog sensation that lined the inside of my chops. Chemo is sexy ain’t it folks.
OBVS this influenced the type of grub I wanted to graze on. Sure I was intent on snacking in a healthy styleee, boosting my immunity and energy levels whilst I was at it, but then your bod is under attack it craves calories. Usually calories presented on a round doughy base laden with melted cheese and various veggie toppings to be fair. I ate like I was on a hangover pretty much the entire time, hankering for anything that would coat my morose mouth and satisfy my insatiable steroid-charged appetite. If I was able to eat that is. It’s kinda difficult when you’ve got ulcers galore.
You still here? Fabulous.
Once you eventually manage to get some decent grub down ya the fun really begins. Like clockwork around four or five days into my chemo cycle I’d endure the most horrific heartburn and indigestion of my young adult life. The drugs absolutely obliterate your stomach lining and so digesting meals becomes one a heck of a hellish experience. Unable to get into a comfy position at any point whether stood, sat or propped up in my sick bed my insides burned like woah and I mean nothing, nada, nish could settle or soothe. Throughout those unbearably uncomfortable nights cracks would start to form in my resolve. How on Earth was I going to abide these tortuous side effects time and time again? But it passed, as per, and I persevered. Focused on the next load of ailments.
I often joke with my nearest and dearest that chemotherapy is an arsehole because believe it or not it was my anus that gave me the most agg. From my very first infusion I suffered something silly with, how do I phrase this? Twosies. Initially it was being unable to go at all. Chemo combined with anti-sickness and painkillers will dry you out and back you up like nobody’s business, however I was so unbelievably out of it for the first few days that I didn’t realise what damage I was doing whilst attempting to drop the kids off as they say. I soon sussed that a little laxative before bedtime would do the trick but my mammoth amount of straining (soz) meant by that point I’d essentially torn myself a new one. Yeah it’s just as painful as it sounds.
Whilst my best buds were off living it up in Amsterdam I found myself laid out in a Dr’s office, trousers down, rectum being examined. It was an all time low for sure. Doc confirmed I’d ripped my bum bum good and proper which despite epic amounts of Anusol and ice packs would be a pain in the arse – ba doom chish – to heal. I vividly remember the pain being so intense I had to adopt the brace position each time I had to empty my bowels and even resorted to squatting on the loo seat like those signs you see in international public toilets. Might sound dramatic to you lot but I broke down in a major way during those days. The most basic of bodily functions were failing me and it was a bit too much to deal.
Midway through chemo I moved to new narcs and my downstairs drama flipped the script. My stools went from being blocked to looser than you’d like. It wasn’t the shits as such it was just that if I had the urge, I had to purge. Lesser of the two evils, I calmly managed my updated anal misgivings, until one fateful afternoon whilst in the midst of almighty muscle aches I decided to ease the soreness with a warm bath infused with essential oils. Excited to soak my weary limbs I slid into the tub, closed my eyes, and coughed. What followed was, well I’m sure you get the picture. I hopped out quick sharp and let out the loudest cackle as I pulled the plug on my contaminated bath before texting my sis the poo + bath = monkey covering eyes emojis. You really do have to laugh.
By the time I was three quarters of the way through chemo the cumulative effects had truly taken their toll and my body’s defenses were hanging on by a thread. Because chemotherapy affects your bone marrow’s ability to produce white blood cells, you have a higher risk of infection, thus I was given a course of G-CSF injections to self-administer each cycle to strengthen my immune system.
Was I able to administer the injections myself? Was I fuck! Far too chicken. I called on my fam-a-lam to do the daily deed instead. And getting stabbed every day was much easier to cope with than the killer skeletal discomfort let me tell you. Generating fresh blood cells causes your bone dem sugar to ache incessantly which knocked me for six and became the bane of my existence.
The aim is to prevent neutropenia which is where your neutrophils drop to dangerously low levels making even the littlest of lurgies fatal to your bod. Scary innit. I was anxious about this happening the entire treatment. Taking my temperature militantly and making calls to the Marsden more than I should. And when it did happen, I didn’t expect it at all.
At cycle seven I had a hideous bout of the trots which had me back and forth to the lav no less than twelve times in eight hours – and having never been sick from the chemo drugs before when I barfed into my bedroom bin I was convinced I had a tummy bug and swiftly shimmied down to the CCU.
When the Doc came back with my bloods I was certain I’d be loaded with anti-biotics and sent on my way. What I didn’t expect was to be told that whilst normal human neutrophil counts sit at 2.5 mine were chilling at a solid 0.16. My penultimate nuking had done me in proper.
In short I had zero immunity and couldn’t fight off a fucking thing. Glorious.
As is procedure with neutropenia I was whisked off to a private room – aka quarantine – and drip fed both fluids and anti-biotics on mass for the weekend. Somehow the admissions Gods had smiled on me and I was placed on a private ward in the chicest hospital situation I had ever seen. At least if I was missing out on Drizzy at the O2 I was doing it in style eh gang.
Crazy now to think how fragile my physique actually was and all the ways in which I used to carelessly batter my body before. I swear down I will never ever take my health for granted again.
It’s now almost six months on from my last ever dose and although I feel more and more like me errrday I’m still very much dealing with the effects of the post-chemo comedown. My nose still runs like a tap and I’m at the point where I might start putting up posters around Hackney on the hunt for my missing period. Not to mention dizzy spells daily and super spotty skin thanks to my hormones being all over the gaff. Oh and how could I forget my old friend fatigue – my nemesis. Trying frantically not to burn myself out. A constant battle not to boom and bust.
I’m also currently getting to grips with crushing pains all up in my pelvis too. Likely to be Early Onset Arthritis from damage done to my bones, which is nice, at 32. Thing is – my hair may have sprouted back, my cheekbones resurrected from beneath the bloating and the twinkle might have returned to my eye – although my body is starting to look like mine it isn’t acting like it. At all. And that’s because my anatomy has been reduced to rubble. It’s desperately trying to claw its way back from chemo’s clutches, because as well as annihilating my cancer altogether (huzzah!), it came in like a wrecking ball and demolished the good stuff too. Destroy to rebuild hype. The foundations may be strong but I worry that there’s been some irreversible structural damage.
I live life at an altered pace these days, dead set on not overdoing it but also agonising over not wanting to lose sight of who I am. Or who I was I guess. So I’m sussing out how to be Lozza: The Sequel. Finding the balance between resting and raving is a right bastard and something that I haven’t quite figured out yet. I’m desperate to be a standard single thirty-something gyal about town but I can’t help but feel guilty on the bod and am worried I’m doing it a disservice, you know? I’m hardly about to knock booze on the bonce so I’m sipping on the sauce instead of shotting it for once. At least whilst I work out what sits well and what I should shun. Hangovers remind me of the chemo and send me west anyway to be fair.
And it’s not only the anatomical fallout to contend with. Coming to terms with watching yourself physically fall apart is no easy feat and takes its toll on your mental health big time. The emotional scars run deep in my veins. Etched into my bones. I’m broken underneath and not ashamed to say it, this experience has crushed me, twisted me and torn me apart in ways I try my best but can’t quite convey. Some days I crying at nothing. At everything. Totally lost in myself and my new world. Feel like an anxious, miserable C U N Tuesday most of the time. Shouldn’t I be bouncing off the walls at the little wins? And the big ones. I did just beat fucking cancer after all!
But much like Deadpool in the oxygen chamber chemotherapy bring you to the very edge, and just when you think you can’t take it anymore, that you might not make it, you recover. And it starts all over again. It’s a kind of torture. A test of spirit and resolve. Because it’s not until you have been pushed to your absolute limit that you see yourself for who you truly are.
Despite how difficult I’ll be forever grateful for this treatment, it has saved my life and it will save millions of others too. To all of my gorgey readers in the midst or about to embark on this hell of a ride – have hope and find faith. Get that head up and keep it there. Yes it’s terrifying but it’s temporary and your life will be all the richer for it. Fact.
I grieve my old life daily and mourn the girl I once was but this experience has been the making not the breaking. I’m proud of the woman cancer has made me and much like the Japanese art of Kintsukouri I will highlight my cracks because I am much more beautiful for having been broken. Mind. Body. Soul.
Until next time… Whatever it is, you got this.