The Patient’s Wife

It commanded my attention searing its way through my chest, its steady rhythm building to an ominous crescendo, the reverberation ricocheting between my ears as it clutched my throat in a vice like grip.

Fear, you bastard.

It had been 26 months since your last appearance.  Thankfully, this time the visceral response did not warrant the acute reaction it provoked.

It’s been a turbulent and tiresome month focused on the vagaries of Steve’s brain tumour.

A question I get asked a lot is, “hasn’t he fully recovered?” My defence mechanism often hears a thinly veiled, “yet”???

Yes, he STILL experiences a myriad of physical issues of varying degree – left side weakness, neuropathy, double vision, balance issues, dysphagia, dysphasia, asnomia, neurogenic digestive issues, rapid onset fatigue, agitation and emotional mood swings.

While currently not life threatening in its contained state, the tumour embedded in Steve’s brain stem places him in a position where he is living with what I consider to be a unique Chronic Condition. Being part of this journey at times, feels as though I’m in the midst of an exclusive multi-disciplined ultra-marathon endurance event.

I often bristle at being labelled ‘The Carer’. I am first and foremost, ‘Steve’s WIFE’. But as time goes on, I am more accepting that some of the balance has shifted in our new normal.

It’s not easy.

It’s time consuming, energy sapping and at times, frustrating. I don’t like it when I need to take on a paternalistic role – the irony being, that parenting my husband has been the closest thing I have to being a parent. I am acutely cognisant about the importance of autonomy and personal liberty.

Working fewer hours so that I can spend more time with Steve was an easy decision despite the financial strain it places on us. I don’t regret the choices I’ve made.

Respect and love are non-negotiable for me, and Steve’s emotional temperament post surgery unveiled an incredible capacity for love, compassion and empathy that lay dormant for a couple years prior to diagnosis. His intellect is fully intact. These are crucial elements for me that help get me through the difficult times.

I don’t ever feel trapped.

A couple of weeks ago, Steve committed to attend a seminar at RNSH about Collaborative Care for Neuro-Oncology. He was attending as part of his role with Brain Tumour Alliance Australia.  This was to be his first public event after having to cancel travel to attend a school reunion and a conference due to experiencing more frequent episodes of overwhelming and debilitating fatigue over the past 6 weeks.

Two and a half hours prior to the seminar, the fatigue beast swooped in and took hold of Steve, and he took himself to bed. I am used to the nuances of when the beast rears its head – the amount of rest he required, for me to be calm and measured, and encouraging in assessing whether he was capable of attending. He was. And he returned home 3 hours later, feeling okay, albeit exhausted.

So last Friday, with Steve attending an all day training session at the Cancer Council, I was concerned about him managing his energy and fatigue levels.

I need not have worried.

I have been told that he got through the day with much aplomb and engagement. So much so that he went out for a drink with a colleague afterwards – a full 11 hours without needing a rest. But in his first real foray at being ‘normal’, Steve forgot to call or text to let me know that he was okay.

And he didn’t answer any of my calls or text messages.

The 30 minute parallel universe I entered had me come face to face with that Bastard, Fear, as I tried to locate my husband. The parallel being that I was acutely aware of how hysterical my fear would seem in a normal situation, trying to find one’s husband at 6.30pm on a Friday night!

The sequence of events leading up to making a phone call to St Vincent’s hospital was stopped when Steve finally called me – over 90 minutes after the training session finished. “Focus on the relief” was the sage advice our friend, Richard, offered me as my fear swiftly turned to anger and utter disbelief at the lack respect for me.

It’s taken a couple of days to recover from the hurt, disappointment and shock of Friday. Steve and I have repaired the temporary chasm created by what occurred.

My fear was real. But the scenario that I created was imagined.