The silence could kill you

Posted on 20 May, 2016

My name is Catherine. It’s been 289 days since my last cervical screening test.

My day and life is full of lists. To do. Must do. Bucket lists. Foods to avoid lists. But there is one list I keep that no one really knows about and I suspect I am not the only woman with such a list. It is the list of unmentionables – the kind of topics and experiences that for too long we – as a society and as women – haven’t been comfortable acknowledging, sharing, hearing or talking about.

Miscarriage. Domestic Violence. Rape. Sexual Harassment. Workplace Discrimination. Endometriosis. Grief. Breast Cancer. Women’s Sexual Health.

The conversation on these important society issues and individual experiences is certainly happening now, but when I was 22 there was a silence about such things that was and still is killing women; stifling their dreams, dismissing their emotional experiences, and which only allowed certain conversations about the female body.

This was before Sex and the City. Carrie and her gal pals weren’t rolling around in our conversations helping us unlock the “unspoken”. It was before Offspring, Call the Midwife or Love Child spotlighting what a challenge all this business is for women and how steeped in shame, unwritten rules, misinformation and silence it all was/is.

Catherine with her daughter and husband.

At 22 my doctor told me to go to the clinic and have a Pap test. I did. It came back abnormal with the recommendation that I should come back in six months.

I didn’t. I repeat. I did not follow the advice of health professionals. Or the advertising calls on the back of public toilet doors to have regular Pap tests. I didn’t talk about it with my gal pals or the people in my life because you didn’t talk about things like that.

I went about my life. Fast forward. I am 26, and in what was a surprise, I am pregnant with twins.

I am walking through Hyde Park on my way to work, in what I hope is the last of the muggy Sydney summer. I think, ‘when the summer returns I will push a stroller along this avenue and we will sit by the fountain’. I am tired these days regardless of the hour but I also feel a touch dizzy. I see the fountain.

The next moment I remember being in a sweaty lather in Sydney Hospital, with bright lights, vomiting and agony. I am having a miscarriage. They do a procedure, I pass out again.

I know I went home but I couldn’t tell you how. I just remember lying in a ball on the lounge, feeling empty as a flush of hormones started to leave me.

“Try and get some sleep,” they said. “You will be in some pain for a few days.”

It’s the middle of the night and I’m in agony again. Bleeding heavily. It doesn’t feel right.

I head to Royal Prince Alfred Emergency. I have a perforated uterus and I am taken in for surgery next door at the Royal Women’s Hospital. I need to heal. I can’t try for children for at least 18 months. Another day or two and I am home again.

I start to get on with life. Everything feels different. I don’t like Sydney anymore. To be surrounded by people yet so alone. The silence kills me. Nobody knows what to say. I walk the sympathy cards and dying flowers down to the bin and throw them into the trash with all the other once-were-beautiful things. I fall to the ground against the bin and my wild wail echoes, like the last thing thriving within me. A baby cries in the apartment block above stealing my grief, reminding me of all that is gone.

It is a haze. I buy earplugs to block out the sound of the baby in the apartment at night. It still wakes me like a tormentor and slaps me out of the little slumber that the grief is yet to find.

Two weeks go by and then there’s a message from the hospital. ‘You need to come back as soon as possible’.

It is one of those messages with scant detail but a kind of insistence that speaks volumes. I am scared. I am over it. I call back and make an appointment for the next day.

I meet with the head obstetrician, who happens to be one of the leading obstetricians in the country; he’s the consultant for the Australian Defence Forces and still to this day the most compassionate man I have ever met.

He gently tells me that while they were sewing me back together they ran some tests and they have returned CIN 3 and CIN 4 cells – it means there are precancerous cells and a carcinoma (cancer) in my cervix.

My head is spinning. He wants to operate as soon as possible. He says he will try and remove all the cells with a laser, check for a tumour and give a round of radiation as a start.

He asks me if I would also like to freeze some eggs while I am under – just in case. I don’t want to tempt fate anymore. I want options. I agree to do it. It means a dose of hormones to stimulate eggs. It tips me further over the edge.

It has only been a few days but now a bunch of ‘what-if’s have joined the baggage of ‘what-could-have-been’s.

“It is best,” they say, “not to think of what might happen, just to take it step by step.”

How do you do that? I’m a planner. An issues manager. A thinker. A road tripper with a map and packed lunches. I want to be prepared.

I am back at the Royal Women’s.

I am lying in the pre operation ward thinking this is happening to someone else.  That this is some kind of hospital soap opera and I have a reoccurring role. I just want to settle into a routine again and let this sink into the small spaces in my life until its invisible. The way sand seems to find a home in everything no matter how long it has been since you were at the beach. I can see the grief on the horizon but I don’t want it to get any closer for I know it will engulf me and I am not sure who I will be once it passes.

I had an idea of who I would be as a mother, on the other side of pregnancy. But not this. ‘Mother.’ I hear the word these days, even in my own mind and it is like invisible bullets.

There is ‘one’ next to me nursing her baby. I deliberately glance briefly at her. I know now to be careful about looking as I found myself staring at a child in a pram, lost, vacant, stricken to another time by what could have been.

She looks to her husband and little boy sitting patiently on the edge of the bed. The doctor draws the curtain. I can’t help but overhear.

She has ovarian cancer. She has a baby and ovarian cancer.

I now feel selfish in my pool of grief as she is holding a future in her hands and her own life in the balance. I start to imagine her journey. Her battle. Her support network. It is easier than having to face my own.

Truth is, right now I want the anaesthetic – I want a reason not to have to think for a while.

My doctor arrives. His face is gentle and the creases bring me comfort. You can tell he has seen a lot and keeps showing up for more. I want to wrap my arms around his belly, lean into his chest and tell him the list of secret things nobody knows. He is like Santa Claus. He reassures me that he will take good care of me. I am wheeled away.

When I wake it is good news. It was a tumour but he thinks he got it all. I’ve had a round of radiation. I can go home in the morning but I am to come back in a week.

I am back on auto-pilot. I am living in the aftermath. Pretending everything is ok. It’s autumn now and I didn’t even notice until I realise I’m cold. Nobody knows what to say to this part of the drama. If this is a soap opera then this is a silent one with no closed captions.

It is really only with all the time that has passed that I know I was rattled, numb and grieving. I was a bit of a nightmare to be around. I hated flowers. I hated Sydney. I would never walk through Hyde Park anymore. I got cranky more than I laughed. I was angry with my body that it hadn’t lived up to what it promised. I was floating in the deep space parts of my soul, alone.

I could be happy for others in their news of pregnancy, engagements, trips and promotions but like weeds the grief and fear would find a way to coexist in these moments too.

I return to the Royal Women’s. I am healing well but I need six monthly Pap tests till I am given the all clear.

He tells me it was aggressive and multiplying fast. He says that while the miscarriage was a terrible loss, it may have been a different story for me if I had gone to term, where surgery or the small amount of treatment I had would have been unlikely by then.

My doctor recommends that I buy the new cervical cancer, or human papillomavirus (HPV), vaccine as I am now too old to receive it for free.

I do this. I know I have dodged a bullet. I’m not sure I will get another second chance.

I move to Canberra. I need to be in a different space. Two years later, after regular tests, I have the all clear. I am luckily pregnant in a heart beat.

Fast forward. I’m 34. I’m a mother. I’m asked to go and interview an innovative medical scientist and former Australian of the Year on behalf of the Government.

It’s just me and Dr Ian Frazer in his Brisbane office. We talk about why medicine is so important. We talk about science. We talk about the theory that viruses cause certain cancers. We talk about family. He is incredibly humble. I stop him mid sentence as I can’t hold it in any longer.

“Thank you,” I say and I start to cry. He hands me a tissue box. ‘Thank you,” I say again. “I had your vaccine and I’m pretty sure it saved my life.”

I give him the cliff notes on the saga. Then I show him a picture of my daughter.

It’s a quiet moment, not a silent one. It is like I have been given a reminder of my near miss. A chance to think more deeply about how I spend my days.

On my flight home I quietly sob in the window seat and wonder about the mother with ovarian cancer. I wonder about the woman next to me and the one in the seat in front and the flight attendant passing me tea and tissues.

I wonder what is on our lists. To do. Must do. Bucket Lists. Avoid List. And the unmentionable lists.

I open my laptop and put a Pap test on my to do list.

The woman next to me leans in. “I need to do that too,” she says, taking out her diary.

It’s clear. So is the next one.

The reminder in my phone goes off loudly. I am done with the silence.

My name is Catherine. It’s 56 days till my next Pap test.

For more information on cervical screening (Pap tests), visit the ACT Cervical Screening Program website at health.act.gov.au/cervicalscreening or phone 13 15 56.

Images supplied by author. 

This is a sponsored post from ACT Health but an honest account from the author. For more information on our sponsored post policy, click here.