Smile. You’re on Candid Camera

There’s a mirror on the back wall of the lift that takes you up to the third floor of the south wing of Cabrini hospital. I sometimes look into it when I’m alone in the lift.

I make faces to check the state of my face or of my teeth, and then check myself all over.

Still here, still the same old me but ever so weary.

Even though I know it’s impossible, it’s not the first time I’ve wondered whether the far wall of the lift in the south wing includes one of those strange two way mirrors they have in police stations through which a group of unseen detectives watch their colleagues interrogate someone and thereby establish the state of mind of the person interrogated.

They have these mirrors in certain therapeutic establishments as well, where a therapist in training or even a more experienced therapist interviews a person, or more likely, an entire family, while the rest of the therapeutic team look on through the two way screen, unseen by the people interviewed, to pass judgement on what is going on.

It gives me the creeps.

The idea of being watched by persons unseen.

This is the feeling I have in the hospital, too, only the medical staff make themselves visible. Still I have a sense they’re not as curious about my husband, the person, though they’re deeply curious about his physical condition, which had been going well until Thursday night when he copped a nose bleed that refused to stop.

For three days earlier, he’d managed to come home for the best part of the day. I brought him back to the hospital at night around 9 pm so that he’d be there first thing in the morning for further tests and infusions of antibiotic.

Thursday night after dinner was no exception.

But then his nose started to bleed after he’d brushed his teeth post dinner and it continued on the drive back to the hospital and for the next half hour. The nurse applied an ice pack to the back of his neck and he tilted forward in is chair.

He nurse told us this was the new way of stopping a nosebleed. But even as I later helped my husband to bed and he lay back on his pillow exhausted and the bleeding appeared to have stopped, I worried that it signified something more serious.

My husband gets nosebleeds from time to time but they stop in no time. This one did not. It bled all night.

The next morning my daughter who visited first thing told me that the caravan had been in to check my husband and they were still happy with his progress as far as the infection goes, but behind closed doors they changed their mind about that morning’s infusion of the third antibiotic, the Vacomycin, because the latest blood tests revealed my husband’s platelets had dropped from 155 ten days earlier – when they first started him on Vancomycin – to 22.

Alarmed, they had thoughts of giving him a transfusion of blood, but by mid afternoon they had changed their minds again.

After they had gathered in a huddle, as my husband described it, they decided if it was true that the Vancomycin had been ‘eating’ his platelets there was no point giving him a transfusion till they could be sure it was out of his system.

Maybe after forty-eight hours, but in the meantime, the platelets might rise of their own accord with a new antibiotic.

So they started my husband on a fourth antibiotic – fifth, if you include the Cephalex they prescribed in the early days before they had established the nature of the infection.

The new antibiotic is called Daptomycin and one of the nurses told me it’s a third generation antibiotic, state of the art, but very expensive.

‘Eight hundred a pop,’ she said – eight hundred dollars a small sachet and so my husband’s getting Rolls Royce treatment.

There are now only seven more days of these antibiotic infusions to go.

So we hope this one will hold till the end of the week. This  coming Friday, 23 March, is day 42 of the targeted treatment, the day they make a decision on whether or not the treatment has worked and what to do next.

In the mirror of the lift on the way down stairs to the café to fetch another latte loaded with sugar, despite the fact everyone treats sugar like it’s a poison these days, I sip off the frothy top and consider my forlorn state.

How many more trips up and down this lift, the lift behind which I imagine stand a group of camera men, perhaps people from the old Candid Camera, a show I used to watch as a child.

A show in which people are introduced to a problem, say in the street, a problem that is really a trick and when they try to solve the problem, say shift a log off a road or some other such difficulty, they can’t because it’s concreted in and we, the audience, laugh at them as they try this way and that to get it free, until eventually something dreadful happens and they topple over flat, face in the mud and the camera reveals itself.

They realise then, this poor soul, her muddy face aghast and the camera team call:

‘Smile, you’re on Candid camera’.

And the muddied person laughs and shakes the cameraman’ s hand and welcome the experience, made famous through their efforts to improve a situation that was contrived to trip them up.

It’s not unlike the way I feel in the hospital and my husband more so.

He talks of the ‘tricks’ the doctors have up their sleeves.

Whenever we think we have a pattern established, a routine. Whenever we think things are going smoothly enough and there is some hopeful conclusion ahead, the doctors drag out a fresh series of hoops through which he and his body must jump before deliverance is possible.

It’s a paranoid position I know, induced through too much helplessness when you’re on the receiving end of the trial and error process that is modern medicine.

We’ll throw this one at him and good if it works but when it stops working and something untoward happens we’ll try to rectify that with something else and they try something new and see how that goes.

It’s a function of iatrogenesis, the negative side effect of treatment, the unwanted, unexpected things that can go wrong on the way either to recovery or death.

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.