The Moment of Diagnosis (or, When The Shit Hits The Fan)

Endocrinologist. Endocrinologist.  Endocrinologist!

I’ve never seen an endocrinologist, I don’t even know what they do, but every night as I close my eyes, there is that word rumbling through my mind, like a runaway train.

I make an appointment at my GP’s office, perch myself tentatively on the edge of her polyester office chair, and begin:

“I know this sounds strange, but I keep hearing the word ‘endocrinologist’ over and over again as I fall asleep at night. Mum’s intuition saved her from breast cancer twice, so I want to follow this and get it checked out.”

My GP regards me carefully. She had breast cancer herself a few years prior, and as she slowly draws a pad of paper towards her, she scribbles some instructions and signs the sheet saying, “We’ll do a blood test. If anything comes back abnormal, we’ll send you.”  I feel a wave of relief wash through my body that she hasn’t scoffed. It’s hard enough to admit out loud to someone what I’m hearing without the humiliation of seeing eyes roll or hearing condescension.

• • • 

A Search for Answers

The results come in: some hormones “slightly out of the normal range”, iron is very low … but no endocrinologist referral. Instead, she says to repeat the blood tests in 6 months’ time.

A year later I visit again, bothered by the cystic acne that has been torturing my skin for the past three years. She refers me to a dermatologist, who pronounces it hormone related and prescribes me a birth control pill.  I take The Pill faithfully for a year, and although the acne clears, I am left with weird brown patches over my face. This is masking whatever’s really going on I think, and stop taking it.

I ask the GP to repeat the blood tests, but she says it’s pointless testing hormone levels as they fluctuate throughout the month. She’s surprised and perhaps embarrassed when I remind her we tested them last year.  She sends me to the pathology centre, and when the results come back, the hormones are revealed to be wildly elevated… it’s because of the pill, my GP says.  I tearfully explain how low and stressed I am feeling, in addition to a recent a bad relationship breakup, and she suggests antidepressants. My tears flow even faster, but are now mixed with anger and frustration that my emotions are seen as something else to medicate away. I want to run from the room screaming, but instead quietly refuse the prescription.

We begin iron injections in attempt to restore some energy, and at some point in that time, 2 years on from our initial conversation, she offers the name of an endocrinologist from the local hospital. I have every intention of following through, but ultimately it becomes just one more thing on my never-ending to-do list, and disappears from my consciousness.

Daily life resumes in an uneasy truce.

• • • 

Enough is Enough

In September 2013, I gain 5kg in under a month. My weight has always been stable; this is out of the ordinary. My work hours change, and the 3:30am alarm leaves me feeling angry, exhausted and trapped in a dark cycle. I exist on cups of tea and sugary treats. When I get home from work, I’m too wired to sleep yet completely exhausted with no energy to complete even the simplest of tasks. Laundry piles up around me, tax bills go unpaid and I feel alone and overwhelmed.

By April 2014, I decide enough is enough. Erratic energy levels, constant mood swings, lethargy and now the bloody cystic acne that’s returned with a vengeance. I recall that weird “endocrinologist” dreamscape from three years prior, so I sit down at my computer to Google: “holistic endocrinologist”.

A name appears on the first page of results – Sophie – and I feel inexplicably drawn to it. She’s about an hour away, but I know she’s who I need to see. I make an appointment without discussing it with my GP, not wanting to be deferred again. As soon as I walk into her office, I feel warm, cared for and safe.

I tell Sophie about the acne, weight gain, changes in my energy levels, and she takes copious notes. She places her fingers over the lower part of my neck and asks me to swallow. She then stands up and inspects my neck from various angles, and tells me my thyroid is enlarged, and I need an ultrasound.

If you’ve never seen a picture of a thyroid, it’s the most beautiful butterfly shaped organ. In fact, I don’t think I’ll ever see a butterfly again without thinking about the thyroid.

Thyroid Gland

The ultrasound shows 4 small lumps on the right wing, most around 7-8mm, but one is measured at 11mm. Sophie explains we should do a fine needle biopsy on any lump over 1cm in size, but because the others are quite small, we can wait 3 months.  Blood tests and scans reveal other health issues, and so I begin making big changes: a nutritionist, sugar and most dairy elimination, more rest, exercise and de-stressing with yoga and meditation.

• • • 

The Fresh Hell That Is A Biopsy

When I return to see Sophie 4 months later, she says there’s no need to biopsy now, we can wait for twelve months, but I persist and the next day I’m off to the imaging centre.

The man who does the biopsy doesn’t want to use anaesthetic, so I have to lie there, perfectly still, as he wiggles the needle through my neck into my thyroid and draws a sample of the nodule’s cells. Four times. I concentrate on my breathing, trying to keep it slow and steady so my body will remain calm, but he grows frustrated and asks me to stop breathing so deeply, as it’s making the needle move. I hold my breath. I can feel my inner ear burning as the needle penetrates the thyroid, and once it is over, I burst into tears. The collector looks alarmed, and makes a quick exit from the room, leaving the nurse to hand me some tissues and stand in uncomfortable silence as I try to stem my sobbing. My body goes into shock and I begin to shake.

I am waiting with a friend in Sophie’s office 5 days later, and I have an excruciating throat infection from the biopsy procedure that is making it near impossible to speak. Sophie phones for the results and, as she hangs up, sighs:

“Okay Emma. They’re calling it ‘Atypia of undetermined significance’. That means it’s not definitively cancer, but it’s not definitively benign. We normally repeat the biopsy again in 6 weeks time, although it’s likely you’ll get a similar result. In these cases, it’s a 30% chance of cancer. ”

I feel I should point out here, thyroid cancer is relatively rare, although now apparently on the rise: only about 5% of all thyroid nodules are cancerous. With my biopsy results, the odds rise to 30%, though still in my favour.  But in the past four months, the largest nodule has grown from 11mm to 15mm. The average rate of growth is about 1mm/year… so this is too fast. My reaction is even faster.

“Nope. I want it out. I’m not going through this again, and I’m not waiting. I want to see the best surgeon, it doesn’t matter if I have to travel. Someone who is good at what they do, and emotionally sensitive.”

• • • 

Sophie refers me to Mark, who sees me a few weeks before Christmas 2014. He performs his own ultrasound and, in a very calm, friendly way, he says “I think it’s best that we get this out. It’s an irregular shape, and it’s got what we call micro-calcifications, plus it’s grown quite quickly. I have some availability in a fortnight if that suits you?”

I pause, looking to my partner and then back to Mark. “Is there a chance that even given all the irregularities, this could be benign and just looks weird?”. Even as I say these words, I can feel myself engage in a subtle but powerful bargaining process. “Yes, it is possible. We might just be able to remove the right side of your thyroid. Most likely the left side will then enlarge a bit to compensate for the missing piece and you can go back to living a normal life.”

I go home, turning the options over in my mind.

My in-laws are visiting over the summer, surgery recovery is going to get in the way of being a good host … That TV show I’ve been auditioning for – I’m down to the final few.  That role could change my life, I can’t run off and have surgery and lose a role that could be a big break!  … IT’S SUMMER!  Who wants to spend their time in bed while everyone else is on the beach!?!

I head back to Dr Google and comb through each test report, intent on deciphering every last bit of terminology and jargon. I know you shouldn’t Google, but it helps me.  The excruciating wait for months between appointments has drained me and I need to regain some control.  Atypia of undetermined significance.  Enlarged thyroid.  Upper limit of normal.  Micro-calcifications.  Rate of growth. Irregular shape.  Internal vascularity.  Highly suspicious sonographic features.  It’s then that I realise:

This could actually be fucking cancer.

Surgery is scheduled for 30th January 2015. As I pass through Christmas and New Year, a heavy ball of grey-black anxiety lodges itself within my guts, and the horizon begins to look hazy.

• • • 

The Shit Hits The Fan

I wake up from the surgery high on Endone and feeling completely invincible.  Mark appears in the room and tells me that the surgery has gone well, and that they also removed a lymph node. Wait, what? I know from mum’s breast cancer experience that the mention of lymph nodes is not good, and I say as much to Mark.  He either doesn’t hear me or chooses to ignore me, and says he’ll see me next week to change the dressing and get the results.

Five days later, Mum, Dad, my partner and I walk into his office. Despite the signposts along the way, we are all still clinging to the possibility that it’s just a weird irregularity. A strange and epic tale to be told at dinner parties – “my health scare” – accompanied by some trite comment about how precious life is, before dessert is served.

“It is unfortunately cancer. Papillary thyroid cancer. It’s also present in the lymph node we removed.”

I nod, keeping my eyes focused on his face. I daren’t even glance at any other face in this room lest my entire body and mind rip apart at their very seams and all my stuffing spills out like an abandoned rag doll. He’s saying he’d like to schedule surgery to remove the remaining part of the thyroid, followed by radiation treatment 4-6 weeks later.

“Let’s do it as soon as possible.”

I wake up in hospital 8 days later, only this time the Endone has had the opposite effect and it’s all I can do to breathe without sobbing, and I eventually fall back into a deep sleep. Two hours later, I reawaken to notice two very neat matching scars, looking like a little smile across my sore and stiff neck. They start me on daily Thyroxine – the first day of the rest of my life.

Curiously, I feel a strength surging through me, like a warrior woman filled with fire. When I close my eyes, I am flooded with images of me scaling mountains.  By the second morning, my suitcase is packed and I’m sitting upright on my bed, washed and dressed, asking to be discharged.  Luckily they let me go that morning, turning out to be the best Valentine’s Day present ever!

• • • 

Chrysalism

In the days and weeks that follow, I spend most of my time in parks, churches and meditation. I receive support, cards and flowers from friends and family, but I spend the majority of my time alone, my phone on silent, my emails screened. I stare at oceans and trees, sit in my little hanging chair, and wonder where to put all of this? What is this chapter of my life to be called? Is it the beginning of the end, or the end of the beginning?

Most of the time, I detachedly observe what goes on, as if I were watching a midday telemovie. The only time it feels real is when I’m asked on a form about previous illnesses and I realise I have to tick the box “cancer”. That’s me now, that’s my box? I’m the cancer girl? How do I process this?

And a realisation begins to emerge…

Before the diagnosis, my life had ground to a halt. This “voice” set me on a new path, re-starting my heart, mind and soul. It’s demanded that I speak my truth, even in the face of doctors who are only concerned with “normal” (and not what a patient’s subjective experience is). It’s asked me to make difficult life changes, and to become a staunch advocate for myself and my needs. Even when I’ve tried to ignore it, swallow it, or second-guess my choices – God knows I’ve done all I can to be “normal” – this “voice” has persisted to get me answers and care.

I don’t know what happens next, there are scans to be done and bloods to be taken, and boxes to tick, probably for the rest of my life. But it isn’t my measure of living life successfully any more.

I’m more interested in how fully I can live my life, what I can create, how I can bring integrity and authenticity to what I do, and how much I can love, myself and others. It’s not without its scary moments: as a self-admitted perfectionist – reluctant to even take a painkiller – being dependent on thyroid medication for the rest of my life is deeply confronting.  But this is about “accepting Life on Life’s terms”… so patience is the soup du jour.

And thus, a new-born trust in myself and a strength are born. A deep gratitude for my intuition, and for my body’s ability to heal.  Realising the incredible power of what it is to be human.

Don’t ever fucking give up.

 

Thyroid Surgery - Hospital Gown

Life’s too short … wear the red shoes,

Emma 

11 thoughts on “The Moment of Diagnosis (or, When The Shit Hits The Fan)

  1. Emma you write so powerfully and evocatively. How horrible and frightening for you. I hope you completely recover and put all the horror behind you. You are such a beautiful girl and so funny. and such a good heart. No one expects to be faced with this at such a young age. it is so unfair. so glad you were persistent with your medicos. xxx

  2. Im sorry you went through so much it must have been very scary. You are so strong i did not realise you went through all that. These challenges in life are terrible however you are a survivor persistant and determined. You are doing all the right things and lucky you were persistant in the beginning with your doctors. We really have to listen to our intuition and you have a very strong spiritual awareness love you emma xxxxx

  3. You are an amazing warrior chick in red shoes and your story is being told for a reason. Thankyou beautiful Emma for sharing this most gruelling and life altering experience. You are better for it. Intuition can safe your life for those who listen are in tune and do something about it. Im so happy that you’re doing well and living your most precious life. Xxx iva

  4. Emma, your words are a vivid and heartbreaking reminder of how quickly things can change and how precious life is. Sharing your private thoughts and experiences for others is also tremendously brave. Stay strong and positive! You’re an inspiration and an important role model for others who may find themselves in a similar situation. With love and as much positivity as I can send your way xx
    Ps love the shoe closet!

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