2 years on

Today marks 2 years to the day that I was diagnosed with Stage 2 Nodular-Sclerosing Hodgkin's Lymphoma by an Ear, Nose & Throat doctor, on what was meant to be a routine appointment.  

I thought we would be discussing surgery to remove the "mass of necrotic tissue" from the right-hand side of my neck that had first come to my attention in February.  I'd be left with a sizable scar, I was told. Of course that was preferential to the unthinkable.

A few weeks before 5th July 2018, I remember sitting in the artificially lit rectangular waiting room of the Phoenix Unit with my parents as we anticipated the results of the punch-hole biopsy taken 10 days earlier.  I glanced around at the bald yellow faces, puffy and tired.  The sound of the printer on the reception desk in the corridor, continuously whirring and churning out documents, the rhythm and tone of it sounding weirdly like the Dr Who theme-tune, comical at first but becoming annoying extremely fast.  Elderly patients with fragile tiny bodies barely sitting upright like withered ancient owls, occasionally being wheeled in and out. I should have known really at that moment, I wasn't sitting in this room of seriously poorly people for the shits and giggles, even after Googling "what does lymphoma look like on an ultrasound" immediately upon leaving the tiny darkened side-room.  I had noticed the subtle but clear concern on the technicians face as she dug the cold probe around my collarbones and neck, side to side, quickly returning to the area on the right each time.  I was too young for cancer, too much life left to live.  No, definitely not cancer, there's a myriad of things it could be, Lauren.  Cancer didn't happen to 27 year-old women like me.  Definitely not?

Out of boredom and frustration, I read the titles one by one of the leaflets bursting out of the wire rack on the wall as some mundane daytime TV show played at a volume loud enough to distract me from getting lost in any train of thought for too long.  "The insertion of your Hickman line" read the paper a visibly shaken young man around my age was handed by the doctor as he exited his appointment.  "He must have cancer, the poor lad," my mother whispered into my hair.  In the few hours I waited to be called, the thought of how terrifying it would be to have tubes and wires hanging out of my chest kept popping into my head, intrusive, scary - unaware of this becoming my reality in less than a month, in order for nurses to administer the poisons that would save my life.

The haematologist (who ironically ended up being in charge of my treatment plan) told me as soon as my bum hit the seat, "it's good news, you DON'T have cancer," his smile audible, immediately reassuring me.  I imagine this is how an X-Factor contestant feels when they get through to bootcamp.  See?  Relief washed over me like a warm ray of sunshine, "we still need to find out now what is going on, we will need to remove the necrotic mass, probably infected lymph nodes, and biopsy the whole thing.  I will refer you to the ENT department, we won't be seeing you here again".  See, I was too young for cancer, wasn't I? Silly me, always jumping to the worst case scenario.  Typical pessimistic me.

We left the ward all three of us smiling arm in arm, the worry of the last few weeks of waiting for results having instantly evaporated, and stray tears of happiness rolling down my cheeks. "You can stop worrying now, eh, my darling?", my mother told me, rubbing my arm.  She was right, I could stop worrying.  So, I left the hospital that day being able to relax now that I had been told the mysterious, painful bean-shaped growths that made it hard to move my head were in fact not cancer.

                                                                        ***

More weeks passed by as I waited for the ENT appointment, my impatience growing just as rapidly as the lumps were growing.  Each day it seemed like I could feel another one, or was I imagining it?  No, it definitely started with just one, but now there was half a dozen, easily, the ones I knew I could certainly feel.  Maybe half a dozen others, smaller, not as defined.  Maybe my paranoia was clouding my judgement.

Never had the phrase "having the rug pulled out from under you" been more appropriate.  Nor the expression "clusterfuck".

"Can you excuse me please?  I just need to consult with one of the doctors on the haematology ward.  I'll be back in about 20 minutes or so.  If you can just stay here," the ENT doctor announced with a blankess to her voice, a soft-spoken Indian lady.    I should have known then, but there was a part of me then that was still naive, and largely confident, or maybe it was denial.    

The next few hours after that were blurry.  Crying, lots of crying.  Seeing my family and my fiance visibly heartbroken, the most gut-wrenching sight and sound imaginable, the hyper-realness of it all disorienting and nauseating.  No emergency stop button to press, no off-switch to remove myself from the situation and turn it all off because of how unbearable in every way it felt.  A barrage of emotions that I felt in my stomach, my legs, my head swimming with sheer panic.

"So please, I would like you to stay calm Lauren, but you won't be having surgery anymore, but some treatment in hospital instead..."

"...very good outcome, you are young and you can fight this, just a few treatments you will see very good results.."

"...your biopsy was interpreted wrong by our laboratory, students at a university hospital were sent your slide to study, the cells were found by them..."

Cancer.  I had cancer.  I was being diagnosed with cancer, without the doctor actually using the word cancer?  I had to ask, for clarification to make sure I was hearing everything correctly, maybe I was misunderstanding her or interpreting her fairly vague words wrongly.  "Do I have cancer?"

"Yes, you have cancer.  Hodgkin's lymphoma, blood cancer."

                                                                        ***

That day is still clear in my head.  Like a movie I've seen one-hundred times but not out of choice, a one that plays over and over each time I feel an ache, a pain, a twinge, any bodily sensation that causes me to worry.  It's a never-ending circle of course, most of us have experienced physical symptoms when we are particularly stressed or depressed.  My brain's internal film-roll playing on loop and I'm a front-row spectator, a never-ending nightmare of anxiety and uncertainty.  Sometimes it is so deafening I want to scream, but it's always there, quietly playing down some corridor in my mind.  I wish I could say that life gets exponentially better after finishing treatment and hearing the words "no evidence of disease", once the shackles of no longer having cancer are removed, once your cancer-patient costume of steroid-induced moon-facedness, grey pallor and baldness is revoked.  

Dealing with a potentially fatal illness at such a young age has changed me immeasurably.  The weight of emotions are heavy.  Fear, rage, despair, hopelessness, denial, anger, resentment, sadness, mourning, cycling rapidly, sometimes slowly.  Sometimes one drags me down and has a hold on me for days.  The realisation we all live on borrowed time, omnipresent.  It  rarely inspires me, mostly it scares the living shit out of me.  Death is a fact of life, and the only certainty, but it's not something most people think of the moment they open their eyes, and the last thing on their mind before they sleep, at least not people my age.  I often find myself saying, "I don't care", when in fact I really fucking do.  Cancer broke down my flimsy outer shell, and I grew another back that is hard as a rock, a stormy turbulent sea contained in a brain-sized prison.  

It has taken me two years to speak of the shambolic fashion of how I was diagnosed.  Two years to almost stop resenting those responsible who didn't think to inform me sooner of my diagnosis, instead the results just casually left sitting there on a computer for almost a week before the day in the ENT office they were discovered.  The poor ENT doctor whose usual daily clinic consisted of nasal polyps, tonsillitis and earache, completely unqualified and unversed in diagnosing patients with cancer.

Acceptance of your situation is fucking hard.  Acceptance of how people you thought you could rely on really letting you down, accepting that maybe you just weren't that important or worthy to them to even begin with.  Acceptance of how treatment ages the mind, soul and body.  The fucking unfairness of it all.  Daydreaming of a life that could have been mine, a carefree naive life.  A life that doesn't remind me of the time I almost died, in every single way.  

I can't wear those pyjamas anymore because I wore them for days on end in my hospital room, drenched in a chemical sweat soaked down to the sheets when I was admitted with sepsis.  The sound of a truck reversing, beep-beep-beep, the same noise my drip made for hours during the night when there was no staff around to silence it.  I can't be in this room, I need to redecorate and change my surroundings, these four walls I stared blankly at for hundreds of hours trying to remove myself from the ungodly pain.  Perfume I bought to cheer myself up, given away because it's as though someone managed to bottle the very essence of each chemotherapy session.  

Life being reduced down to it's most simple form; an ebb and flow of physical sensation, barren of comfort and sense of time awry, but the constant draining focus of withstanding such torturous, hell-sent pain.  The result is a unshakable numb purgatory.  Trying to remember the days when your bones didn't feel like they were exploding with the force and fire of an atomic bomb, impossible.

This is all reading like a very bleak novel, so for that I do apologise.  This is the upbeat part (I swear).   For the most part, I will congratulate myself and give myself a fucking well-deserved pat on the back, I love to smile and I love to laugh still, in fact, I make it my priority every day.  My creativity, although sparse and fleeting and not nearly as occasional as I'd like, still makes her appearance and gives me a sense of purpose.  I hope one day she will come back and stay longer, but I appreciate her whole heartedly when she makes a cameo.  Enjoying food and the feeling of a full-stomach without nausea, is truly a blessing.  A warm bed full of love, forehead kisses and a purring cat on my belly, doggy kisses on my toes.  I appreciate beautiful sunrises and sunsets I find myself always in awe of, the sound of the sea, the smell of the earth.  I am lucky to be surrounded by a small but precious group of humans who I am grateful for every day, who make me feel cherished, cared-for and adored.

The grief and horror is something I am learning to live alongside, like a cloak I wear without being given a choice, made from dark heavy clouds that sometimes soak me with torrential rains and batter me with vicious storms.  On most days, at least for a little while, I am able to break my head through the tops of them, the sunshine always somewhere waiting for me to find it.  Because in the end, that's all you can do, and you can rest assured knowing the sunshine is always there waiting for you to find it.  Even on the cloudiest of days.

F E A R

It has been 135 days since my last chemotherapy.


That's 11,664,000 seconds - and the ones of which I've spent awake have been filled with an overwhelming, earth-shattering, stomach churning fear.


You know when you wake up from a nightmare, and for a few moments, it feels completely real until you realise it was all just a bad dream?  Then comes that comforting rush of relief, and your anxieties melt away?  That feeling, only the nightmare is real, and you can't wake up from it because it is your reality.  And the anxiety stays, grows and mutates into something scarier than you've ever been confronted with before.


The first appointment after diagnosis (which was, quite frankly, an absolute sham; I felt truly let down by the NHS - but more of that on another post) with the haematologist, I remember sitting in his sterile office, buzzwords and jargon flying past my ears like bullets.  My mother, father and husband to my right-hand side, all three of them pale and silent.

"...look on the positive side, you're young and you can fight this, excellent prognosis"

"...stage 2, but still only early disease, extremely high cure rate"

"...if initial treatment fails, plenty other options to explore, new CAR-T therapy"

"...treatment with expectation to cure"

I wish I could say those words reassured me, but they just felt like white noise.  I sat shell-shocked; "will I lose my hair?" being the first words I could muster.  I'll be honest, I was quite proud of myself for not screaming and sobbing as hysterically as one might imagine they would upon being told such earth-shattering news.  For the tears I lacked that day, I made up for them a million times over the coming months.


I know many things are in my favour to ultimately be completely cured, but upon being told "you have cancer", it takes every ounce of your being to remain positive.


Sitting there still and silent, it felt like I had just been handed my death sentence - "this is what is going to kill me" were my honest immediate thoughts.  I knew the journey ahead of me would be the hardest thing I would have to do in my life so far, and the thought of my already weak body being pumped full of a poisonous "cure" was just as daunting as being told this disease was rapidly growing inside of me.  I was so tired, after a good couple of years of the disease already tormenting me and sapping my energy.  How would I muster the strength to evict this fucker?

But what is it about being told you have cancer, that is so terrifying?  Undoubtedly, it is having your mortality cruelly waved in your face.  Not only waved in your face, it smacks you around the head at lightening-speed, kicks you in the stomach, leaving you on the floor a trembling mess.  Feeling the very real terror of the prospect of living out what could be the end stage of your life running cold through your veins.

Your mortality, something you can (usually) push to the very back of your brain, hidden away nicely in a compact little box in cupboard locked away in the deepest recess of your psyche - suddenly takes centre stage.  For the first few weeks after diagnosis, death was my first waking thought and the last thing on my mind before I attempted sleep.

As I await my forthcoming PET CT scan on 25th March (with the results on 1st April - happy April fucking Fool's Day to me, ha ha), close to 5 months after my last round of escalated BEACOP-Dac, any small progress that was made in me attempting to stay positive and upbeat since the summer has gradually flaked away, leaving me feeling as fearful and vulnerable as I felt upon my diagnosis.  My antidepressants seem useless now, but still I religiously take them.  My precious but pathetic allowance of Valium being carefully rationed when I feel like I need the whole fucking packet at once.  I wish I could go to hospital and be put under anaesthetic, or pumped full of lovely comforting morphine, and woken up when this is all over.

But what doesn't kill you, makes you stronger.  Right?

Dear Cancer - World Cancer Day 2019

Dear Cancer,

I've been meaning to write this for a long time now.

On July 5th 2018, when I found out you had taken up residence in my body, how I thought I'd cope versus how I actually coped are two different things entirely.


I will never shake that terror, the utter surrealness of it all.


"Lauren", the Dr said in her beautiful soft Indian accent, "you're not having surgery anymore, you're having treatment."  My stomach dropped, treatment?  Treatment for the lumps.  "You need chemotherapy, you have cancer."


The hours that followed were a blur, each second I felt like I was falling deeper and deeper into an infinite chasm.  Vomiting in the sink whilst the student nurse sobbed.  Shakily, slowly walking down the corridor past a waiting room full of oblivious faces.  Seeing my Dad's face drop as he pulled into the hospital, me and my mother sobbing inconsolably.  Cancer.  Cancer, I have cancer.  I hated how the word felt on my tongue, I hated how this was now my reality for the next however long it fucking took to kill this monster.

I had visions of myself, sitting cross-legged in a hospital bed dressed in pyjamas and new pink fluffy slipper-socks, connected to my chemo drip, smiling and laughing with my mother, drinking cups of tea whilst tap-tap-tapping away on my laptop keyboard journaling my experience.  Pouring out thoughts, emotions and feelings into words - my coping mechanism.  If not every day, at least a few times a week.  But that never happened.

You took so much from me.  Leaning over the sink, feeling just completely numb, brushing hundreds of tiny strands of peroxide-blonde hair off my head every time I stroked what was left of my bleached buzzcut.  Watching the ones that managed to not stick onto my sweaty palms falling and fluttering like dead leaves settling into the basin.


This is happening, this is actually happening.  Watching every day my head becoming more sparse.  More of my naked scalp on display.  The thick black locks I had been devoted to growing especially for my wedding day, now just a memory, washed down the plughole.  Fucking great, I'm going to be a bald bride, were my first thoughts.  Actually, those were my second thoughts.  My first thoughts?  Am I going to die?

Lying in bed, three days post-chemo, every inch of my body hurting.  Feeling it, feeling all of it.  The poison in my veins, seeping into every cell of my being.  Bones, skin, teeth.  In my blood, pumping through my body, passing through my heart.  I cry.  

Thirsty, I lie daydreaming of gulping down cup after cup of ice-cold juice.  My mouth, tongue and ulcerated throat hurt so bad all I can manage are tiny sips of lukewarm water every few hours.  Hungry, my empty stomach growls relentlessly but the nausea so intense all I can manage for the fifth day running is a plate of scrambled eggs, and forcing that down is torturous.

I never considered a two-minute shower a luxury but after festering and sweating in my darkened bedroom for days, the gentle stream of hot water feels like a spa day, and the smell of clean skin the most glorious perfume in the universe.  I didn't realise you had a smell, Cancer.  Sickly sweet chemicals mixed with pungent body odour from the relentless sweating.


You fucking kicked my arse.  Honestly, you really did.  Well done.  Because of you, my whole outlook on life changed.  My priorities are clearer than ever, my former worries now pale in significance.  You've toughened me up - I may be a little broken, hastily stuck together and sporting new ugly scars, but I'm fucking alive, I'm still here.   You have made me feel like I want to die at times, but the fact is I don't.  You make me want to live.

Cancer, you used to be a mystery.  What should people do and not do, in order to avoid being caught by you in the cruelest game of "tiggy" we will ever play in life?  The fact is, anyone is fair game to you Cancer.  You'll catch one in every two of us, and we'll go down kicking, screaming, crying and bleeding whilst we do our hardest to wriggle free of you.  You're an evil, vindictive, unpredictable cunt, but I have to give it to you - you don't discriminate.


Boy, girl, and all in between, young, old, baby, white, black, yellow, brown, gay, straight, tall, short, hedonistic, health-freak, thin, fat, chubby, athletic, brainy, bookworm, nerd, genius, lazy, low-life, wicked, thief, beggar, King, Queen, mother, father, daughter, husband, son, wife, loner, rich, poor, sober, addict, kind, funny, selfish.  You honestly don't care.  You have no rules, you make them up as you go and change them at will.  You laugh in our faces when you cheat us after we catch a glimpse of hope - we think we might be free but then you come with your black claws and pull us back down into the abyss by our ankles.


But know this, Cancer.   For all of the people you catch, more of us are escaping you.  We're getting cleverer, we're figuring out your underhand tactics.  The very bodies you love to invade, are the same ones whose brilliant minds are bringing you down, and whose resilience shines like a beacon in the darkness, most brightly when you think you've won.  You can try and blow out our light, but no matter what happens, our flames can never be extinguished, no matter how hard you try.


We're all ganging up on you, a joint effort by all of humanity to finally catch YOU and put you back into your ugly, evil box.


You're not going to win.

the C word part 2

So this post is well overdue.

I foolishly thought I would be able to write every day, or every other day at least, whilst going through this shitstorm.  Turns out chemo is actually pretty brutal - I spent 10 days after my first session in bed, zoned out, still, silent, trying to meditate myself away from the pain.  Writing was the very last thing on my mind, as was showering, eating, moving, drinking, speaking.  When you see cancer patients looking like hell, it's not because of the cancer.  It's the chemo.  Chemotherapy is poisonous.  We are being poisoned in order to save our lives.

The pain.

I'm no stranger to it, but it really did test the limits of my sanity.  Pain makes your days last forever, so it feels a lifetime ago since my first chemo.  The thought of going through at least 5 more recovery periods like the one I've just came through makes me feel physically ill and terrified.

The most distressing pain came from the V drug in the ABVD chemo regimen - "Vinblastine".  It can cause toxicity of the cranial nerve, which runs down the side of the face, causing severe jaw pain.  Imagine having your teeth pulled out one by one, but really quickly, and repeat constantly for 3 DAYS STRAIGHT.  Sharp, electric.  I don't think I got a wink of sleep in 72 hours.  My jaw felt so fragile, like it was made from glass.  I didn't dare open my mouth too much as it felt as though my jaw could shatter into a thousand pieces if I moved it too much.

Teamed with the sore mouth from the infamous A - "Adriamycin" aka Doxorubicin aka THE RED DEVIL I began to realise why people refuse chemotherapy, why people want to give up.  The whole of the inside of my mouth felt like it had been burnt with acid, I barely managed a cup of water on the worst day.  Lidocaine infused mouthwash became my best friend, and the 15 minutes of relief every 3 hours felt like Christmas morning.  I just feel lucky, that these side effects, plus the inescapable fatigue, were my worst ones.  I can't even imagine having to deal with nausea and vomiting on top of this.

So, you could say I am dreading tomorrow and what the next recovery period will bring.  Still I thank myself lucky, I might have cancer, a fairly rare cancer in fact, but it is one of the most highly curable (>90% cure rate when caught at an early "favourable" stage - which I have, stage 2A), even at stage 4B which is the final stage of the disease, when the cancer has spread throughout the body and into the bone marrow.  Because the disease has been caught early, and the fact I have no masses of "bulky" tumours, my outlook is very good indeed.  One chemo down, the half-dozen tumours I could feel in my neck have shrunk by more than half, and I can only feel 3 now.  After tomorrow, I'll have 4 treatments left.  I'm trying to be hopeful I won't need any more than that, but if I need more so be it.  A few months of feeling like dogshit is worth it, if it means it will safe my life.

That old saying is true - "there's always somebody worse off than you".  Given the circumstances, I feel very lucky indeed.  I refuse to let cancer be a death sentence, I refuse to let it take my spirit, I refuse to let it break me.

I have fought for years, physically, and mentally to get to the place I'm at today.  But most importantly, despite everything, I love my life.  I love my fiancé, so much.  He changed my life for the better and restored my faith in the goodness of people.  I love my parents.  I love my sister.  I love my auntie.  I love my friends.  I love my pets.  I love my home.  I love walking on the beach.  I love the sound of birds singing in the morning, and I love beautiful sunsets.  I love the smell of the garden after the rain, I love the smell of hot pavement on summer days.  I love the colours of the trees in Autumn.  I love Halloween, I love Christmas (and pigs in blankets).  I love good coffee and getting lost in a book.  I love my life.

the C word part 1

Cancer is awful.

Cancer is shit, really fucking shit.

Cancer is a motherfucking bastard cuntface from hell.  Not that I'm bitter or anything. 

No, really I'm not bitter.   The three weeks since my diagnosis have been an "emotional rollercoaster" (I can hear the eyerolling from here) and yes, that's the obvious choice of words to use, however cliché it sounds, but it's the only way I can describe it.  

Well, I mean I can describe it better.  Imagine a Mrs Trunchbull-type character strapping you in to the world's scariest ride by the ankles and wrists, rendered completely vulnerable and immobile.  Scream all you want, you're not getting off.  She safety pins your eyes open so you can't possibly close them.  She presses a button and you whizz off at lightening speed, hurtling through darkness, up, down, up, down, drop, darkness again, a tiny glimpse of light every so often provides fleeting relief, a big drop, an even bigger drop.

Suddenly you stop before the ride takes you through different rooms, one-by-one, playing out scenes from your life on a projector.  That part isn't actually scary at all, it's beautiful and makes you realise how wonderful life can be, how temporary everything is.  Emotion, youth, life.  You're crying but it's tears of happiness, of gratitude.  How lucky am I to have been born to experience this world. 

The film is grainy a lot of the time but some for a moment here and there, footage is crystal clear.  Only it was twenty years ago.  The every day things that at the time seemed mundane, little boring normal rituals, so run-of-the-mill that how is it possible that these times, these basic unexceptional hours lived and breathed in this very body you are now poisoning in order to save, could over the years become solid gold nuggets, memories than you can recall like your favourite book on a dusty shelf.

I'm going to stop writing now because I'm emotional and tired. Part 2 tomorrow x