Sleeping with Cancer

It’s three days since we received the diagnosis of Eva’s cancer. The first night was the worst. After returning from the doctor’s we maintained as much normality as possible for the kids, communicating the news to Eva’s brother and sister-in-law in a text message before we got home, then brief sentences. So much for their holiday and a relaxed time with their niece and new nephew.

That evening I was short on patience and instigated a consequence for my daughter not listening to me, far too quickly. I told her she would not have a story before bed as she hadn’t listened to me first two times, and then by the time I had counted to three on the third time. This resulted in a tearful four year-old sobbing in bed, crying to me that she would not sleep that night because she had not had a story. (This is a consequence we’ve only had to resort to about once prior, and is the most serious discipline conceivable to her). I sat there on the edge of her bed, wavering between feeling like an absolute shit, an authoritarian monster, whose daughter was about to lose her mother to cancer, and feeling irritated and annoyed at the drama on display before me. My mind quickly went in to overdrive and I imagined a similar scenario in six months’ time, after Eva’s death, where I would be there with Mia as she cried for her mum. Again, this gut-wrenching helplessness and sickening feeling consumed me. I was acutely aware of how my own shock and inability to process what was happening was being transferred on to my innocent daughter. I struggled to watch the scene unfold, and imagined this multiplied a hundred times over the coming months. Eva and I tag-teamed settling her over the next 20 minutes or so, both managing only limited periods of patience with her. When she woke Luca up with her crying, I stormed in and pointed out what she had done. She tried to suppress a sob, and then let it out and said, ‘I’m sorry, it’s all my fault.’

In that moment I was able to stop. I imagined the scenarios that could potentially play out over the next months: there will be stress and tension and low energy and fear and worry and anxiety. Patience will be stretched to the maximum. But our current vocation in life is creating a home and family for our children where we learn how to tolerate uncertainty and discomfort. We want to impart to them how we deal with uncomfortable emotions and feelings and to accept what they experience and then react proactively.

We rectified the situation with her and rolled into bed.

And then the night started.

There’s something surreal about lying next to the person that you’ve slept with for the last fourteen years, and realising that it is all the same yet so, so different. Now cancer lay with us. We held each other and I stroked Eva’s hair. That thick, dark hair. For the first time in seven years, I refused to sleep with ear plugs. I had a strong urge to be present with every sense over the next months. I want to be able to hear Eva’s breath. I want to hear when she is in pain. I want to hear when she is nauseous and vomiting. I want to hear when she’s crying. Our bodies were buzzing, adrenaline surging, and sleep came and went. At some point Eva sat up and I rubbed her back, and she lack back into my arms. To have your best friend sobbing into your arms that she is too young to die and she has only just started living life is the most difficult experience I have had in life. And I couldn’t say no, you won’t die. I couldn’t reassure her. I could only agree and hold and stroke and break inside. I could only just tolerate my own powerlessness and terror and fear and unfairness, and know, cognitively, that her suffering was yet more and deeper.

To quote a friend, ‘Fucky fuck fuckety fuck fuck! That sucks more than words can describe!’ Pretty accurate.

I think our over-riding thought at this point was, how bad is this? Each step during the week was such an unexpected blow, that it seemed entirely possible that things would keep getting worse. I imagined phrases from the CT reports I’ve read as a doctor: ‘widespread metastatic omental caking…infiltration of the portal vein…compression of the inferior vena cava from significant mediastinal lymphadenopathy…’ I feared that cancer would have spread as insidiously as it had first presented and we were simply waiting out a death sentence. My mind was running at a thousand kilometres per hour: will Luca remember Eva? What will I tell Mia if she asks me if her mum is going to die? How fucking unfair is this on Eva, a woman who has put up with so much in her life, that she is going to be robbed of this best part – her children’s growth and development – that she had worked so damned hard for?

The next morning we phoned the GP and received the result of the FNA (fine needle aspirate) which revealed that the axillary lymph node (which drains the breast) also showed cancer cells. This meant that it was not just confined to the breast. Still no-one could tell us how bad things were, what type of cancer it was, or what would happen next.

Two fortuitous things then happened: the first was that the surgeon that our GP referred us to the day before phoned us. His secretary offered us an appointment at 9.30am the following morning (a Saturday). We jumped at the chance, having no idea how we were going to manage to pay to see a surgeon privately.

The second was due to Eva’s tenacity. She was completely unwilling to wait until the following week to get more tests done to know how advanced the cancer was. She wanted a scan that day. I decided to call the radiology place where she had the biopsy done. They were able to schedule us for a staging CT (to stage the cancer – i.e. how extensive it was) that afternoon. We also booked an MRI of her breast for Monday.

Entering the radiology centre, the predominantly female staff cooed over our little boy. He gave cute chuckles and clucks, and people oohed and aahed. The discordance between what was happening around us and what we were experiencing internally was marked. The receptionist asked for Eva’s specialist referral for the CT; I said I was going to do it. They handed me a paper referral pad: ’36F, R breast invasive carcinoma. CT staging.’

I’ve prescribed antibiotics and anti-emetic medications for Eva before, but ordering my wife’s CT to assess whether cancer we had known about for 24 hours was actually elsewhere in her body, was a chilling experience. I felt somehow implicated in the diagnostic and management process, part of which I would usually have a comfortable degree of professional distance to buffer me from. I was aware of how closely it brought me into the process: we would potentially be left with devastating news without anyone to discuss it with, or any other option to discuss what the prognosis or ongoing management options were. It was a scary step, but one that was tempered by my obligation as her friend and husband; if there was a way in which we could arrive at the knowledge of advanced disease prior to that night, it would at least mean that the agony of not knowing would not be our bed-fellow for another night. It would mean we could imagine a little bit more Eva’s and our children’s immediate future.

 

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Author: smenelaws

Husband, father, friend, vicarious cancer sufferer, doctor, amateur yogi.

2 thoughts on “Sleeping with Cancer”

  1. Beautifully written. The thought that a loved one so close could get some ‘bad news’ that we have learnt professionally to convey with relative ease to patients day in and day out is impossible to imagine. What you do so bravely in your blog is make public your most private thoughts and on first thought this might make the situation more anxiety provoking. However in the long run I think your openness and this honesty will allow others who know you best to support you in the best possible way. I hope things pan out for you. Big love this Christmas to you all.

    Like

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