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.
