Category: Life

That rock, that hard place and somewhere in between

As much as I want badly to write till my mind is empty of thoughts I have so little time these days.

I need to set the alarm earlier but then there is the conflict between my wish to sleep longer and my need to write and always the hope that one day soon all of this will be over.

My husband will be out of hospital and all will be well.

But is it ever well? Or are we always at the mercy of death’s waggling finger hovering there above us, a threat to our lives from the moment of birth.

This might sound dramatic but it’s true.

And yet in order to live we need to be able to hide away from this insult for long enough to get on with our lives whatever that means. And maddeningly to live as though there is no tomorrow.

To live one day at a time, from moment to moment with out too much preoccupation with the past nor too much forward planning.

For me, this one day at a time, the Alcoholics Anonymous mantra, which my mother loved and I so hated as a child is one I must try to adopt today.

Otherwise, to pitch myself into the future and risk despair.

My days are punctuated by visits to the hospital such that I now know my way through most of its corridors.

Cabrini hospital is designed in a way that confuses the occasional visitor, which might be one of the reasons the designers have sectioned it into areas ABCDEF. But my mind is such I cannot operate in this way.

This is not a map I can follow. I prefer to use the wall hangings and the pictures on the hospital walls of staff taken over the years, the smiling faces of happy patients young and old engaged with caregivers from all arenas, not only doctors and nurses but radiographers and cleaners and all those who apparently work as a team at the hospital.

Everywhere you encounter people in similar uniforms, but each shirt signifies a different area of endeavour.

It reminds me of the days when I worked at Prince Henry’s hospital in St Kilda Road where the cleaners were referred to as ‘pinkies’ because of their pink uniforms.

They were then mainly women. These days the cleaners remain mainly women for the actual cleaning tasks but there are equal numbers of men engaged in the other more menial functions of hospital life.

In my time, at Prince Henry’s, the nurses wore unfirms of blue and white, though red jumpers and cardigans had come in and they were beginning to wear trousers as well, a uniform navy.

So I have figured the nurses in Cabrini, the lower ranking nurses wear a red blouse while the senior nurses wear white. Some professions like the pharmacists and physios have their profession descriptor emblazoned on their shirts.

One thing that remains the same from my days at Prince Henry’s, the doctors have no uniform and dress seemingly as they please.

When I was at Prince Henry’s the doctors wore white coats over their every day clothes.

These days, doctors don’t bother, all except my husband’s cardiologist, a man who is of his time.

A kind and competent physician and talking to him is a strange experience because when he comes to visit he wears his white coat and he sits down to talk. His bedside manner is inclusive and respectful, so different from some of the younger doctors whose bedside manner leaves much to be desired.

It’s the disempowerment that gets to me.

The fact that my husband cannot know from one day to the next what will be happening to his treatment.

Some ascribe it to the fluctuating levels of the new antibiotic they administer. A nurse explained it to me thus:

There are two forms of antibiotic, one is stable, the other not. If you give the stable form you can, I presume, rest assured the body will react as intended but the unstable form creates problems in that it needs close monitoring.

They try to calibrate the Vancomycin in my husband’s system, too much gives him high readings, which is toxic and so they take himoff infusions for a day, conduct another blood test to check his levels and then give another infusion or two then again check his blood levels. Apparently too much of this antibiotic in your system is dangerous and can affect your kidneys or liver but not enough and you might as well not administer it at all.

So we are between the proverbial rock and hard place.

I notice this more and more in medicine.

This need to calibrate doses, the fact that one size does not fit all. It makes sense.

Human bodies are not identical, but it would help if my husband was kept as informed as the doctors about some of these markers.

The other night a nurse told him the levels for Vancomycin were at 27 when they needed to be between 23 and 25, hence stopping the infusion last night.

When I go to see him this morning I have no idea whether he will be infused or left with an oral antibiotic or no antibiotic at all.

Last night he rested on top of his bed, filled with the despair of this not knowing. He feels well in himself though still very tired but he must stay in his hospital bed until they can get these dosages stable.

 

It’s the fault of his body. And no one else’s, but fault is the wrong word.

And in the process of institutionalisation hen risks losing the ability to assert himself.

So I do it for him.

They other day I asked, if he could go home over night.

They have let him home by day between infusions and blood tests, why not at night?

It paid off this asking. The nurse rang the doctor in charge and yes, my husband could go as long as he was back by 6.30 am.

And so for the first time in just under five weeks, my husband slept in his own bed.

Get him out of here

At times like these, as I sit for hours in hospital, companion to my sick husband, we run out of words to say and we take to reading.

My husband reads the newspaper. He finds books still too much. I read books but in a different way.

The books I read in hospital take on a surreal quality, as if the world on the page is even more alive because of the surrounding walls and sound.

I finished Elizabeth Strout’s Anything is Possible in this way and hoped to goodness that anything is possible.

This book is such a profound evocation of joy and sorrow and an exploration of the way things can change for people raised in poverty in rural Illinois.

And then I finally forced myself to take up Fiona Wright’s Small Acts of Disappearance. I’ve had this book on my shelf for a year now and avoided it, preferring instead the escape of fiction, but this book dragged me into reality.

Wright explores the nature of hunger and how it can sharpen your senses. How hunger when it is the compulsive kind, the seemingly voluntary act of refusing to eat that is the hallmark of anorexia, can be so seductive that eating becomes a torture.

I’ve long known the ways in which controlling your food intake can offer the illusion of having control over your entire life, but Wright’s is control taken to a whole new level.

The obsessional activities, the counting of food, the rituals that accompany the eating, are new to me.

I have a third book in store, once I’ve finished Wright’s evocation of awe at the mystery of  ‘starvation syndrome’, she calls it: Lloyd Jones’s The Cage, his newest book which I bought recently after I heard him speak in Hawthorn Readings.

Jones talked about how easy it is to turn other people into the ‘other’ and thereby limit our compassion or responsibility towards them.

Jones’s book is a type of fable that recognises this worst trait in people in a small country town where two strangers arrive. At first they’re welcomed but over time and in subtle ways they’re ostracised until finally they’re set the task of building themselves a metal construction of indescribable proportions that becomes their cage.

Then they’re left locked inside this cage for the townsfolk to gawp at and be appalled by the stink of their shit, for where else can these two men shit, though even so they try to create some semblance of decency in their small prison.

No one knows what has happened to them. No one knows what they have done.

Sitting with my husband, day after day – he in his hospital pyjamas, though for the past week he’s taken to dressing in ordinary clothes by day – you can see how quickly he becomes the ‘other’ in a hospital setting.

How quickly a person becomes an object. This so especially when the ‘caravan’ arrives.

The caravan, my husband’s name for the team of infectious diseases physicians and specialists, who visit him daily along with one, two or three student doctors.

They come in with one of their team wheeling what looks like a mini supermarket trolley on which sits a digital version of my husband’s history.

The head doctors refer to this history from time to time when they offer my husband the latest details on how his infection is faring.

From test results on his blood, it seems my husband’s body is eliminating the infection. His white blood cell count is down and the markers for infection, which began at 152 when he first arrived in hospital, at last known count, were down to 14.

He needs to get them down to under three before the infectious diseases people will be happy.

It’s like a mathematical exam, which he cannot prepare for and he does his best following the medicos’ instructions to pass.

But then things happen, as in three days ago, after three weeks on antibiotics, my husband’s body erupted in a red rash, itchy and inflamed mostly on his legs and around his ankles.

An allergic reaction to the antibiotics, which caused a re-think just as the doctors were about to introduce a PIC line and send him home.

The re-think involves a change of one antibiotic in the hope to settle the allergy, but my husband is on two antibiotics so it involves eliminating the first, seeing whether it’s the culprit and if so, great, if not, they might need to eliminate the second until they can get rid of the allergy and the infection.

A day-by-day, trial and error process.

The doctors watch like hawks hovering above my husband’s bedside sensitive to every nuance and every shift in his condition. All of which is a good thing but it has the effect of leaving my husband feeling like he’s an animal in the zoo with me at times seated beside him, less the specimen but the specimen’s accompanist.

When the caravan arrives and I am there I want to scream at them all, much as I know full well they’re doing an excellent job, they’re doing their best.

I want to scream at them all, ‘Get this man well and get him out of here’.

And I think of Lloyd Jones’s ‘cage’ and the ways in which being made ‘other’ can render you speechless.

I cannot say any such thing to these doctors, only smile meekly when they come by and ask questions when my mind is clear enough to try to understand more.