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.
You are going through a hard time. I expect we may have passed each other in the Cabrini corridors as we visit our friend who has been there since December. It is not a bad hospital anymore, unlike as it was when my grandmother died there in the late 70s. Those nun nurses back then were horrible and uncaring.
Yes indeed, Andrew, we might well cross paths given I’ve been to the hospital so many times these past several weeks. And your poor friend there since December. That’s worse than five weeks. Anything over a few days feels like too much. And I agree the hospital is much improved from when it was first established in the 1960s I believe. Thanks, Andrew.
I believe your husband is receiving the best of care, Lis, by the ‘top men in their field’, as everyone likes to think of them, and at a hospital with an excellent medical reputation. He sounds as though he is on the mend already. So glad for you both.
Top men – and women – in their field, Karen. The team is in fact led by a woman, and yes my husband’s getting there. Thanks, Karen.
Doctors do have a uniform, Elisabeth. They all carry a stethoscope around their necks. I have a stethoscope and tried it once when visiting my wife in hospital. I was treated with great deference and respect by all staff.
I know that uniform prop, Simon, but these days many staff carry stethoscopes, and the hospital hangs them at the ward doors so they’re free and available to all staff. Thanks, Simon.
I’ve not been hospitalised since I was about twelve but although much has slipped away from me I still find there’s a fair bit of that short visit—two days I think or maybe three—I remember with what passes for clarity in my head these days. I wasn’t exactly homesick but I did miss the familiarity of the quotidian, the order that embraced my days, weeks, months and years. I didn’t know where I’d be every minute of the day but I did know from one day to the next what to expect and I found comfort in that. I actually did like that about the hospital, its routine. Do they still ring bells when visiting time’s over? I remember when Dad had his heart attack—the one he survived—the nurses making us wait until precisely whatever-o’clock-it-was before we were allowed in to see him and then ringing a bell (like the one the janitor jangled in the schoolyard) when it was time for us to get from under their feet and let them get back to the business of treating our loved ones. We were always made to feel we were intruding.
The medical profession in general I find likes to bask in an air of control. I suppose they imagine we find it reassuring, that someone’s got a handle on what’s going on. And sometimes they do. But often, as with your husband, there’s a terrible feeling that they’re winging it. My wife and I used to enjoy watching Hugh Laurie play Gregory House but as the seasons dragged on I found myself more and more irritated by his approach to diagnosis which basically boiled down to try something and see if it works and if it doesn’t hope it teaches us something we can apply to the next guess we’re going to make. It took me a long time to appreciate just how unalike we all are. I wouldn’t have thought there was that much to separate one man and the next but there are so many factors to consider. I bought a new packed of antihistamines a few weeks back and for some reason decided to read the notes that came with it. Christ! there are SO MANY things that can go wrong if you take these pills. Depending on who you are. It’s a coin toss.
I love the phrase “advances in medical science,” I really do, and I’m not saying we’re not heading in the right direction but we’re not advancing, we’re inching forward. Or going round in circles. I would just love to know what a balanced diet consists of because one day you can eat one thing and the next you can’t and then a fortnight later some new study appears saying actually you can, sorry, false alarm. Five weeks feels like a very long time for your husband to be hospitalised. And this is me just reading about it. But at least he seems to be inching in the right direction.
Visiting hours are from 8 am to 8 pm, Jim, and although a woman’s vice sometimes- though not every time – calls over the loudspeaker at 8 pm that all visitors must leave the building, i’ve never felt compelled to do so. I stay until t suits me. I expect the call to leave applies to large and raucous groups, otherwise they leave you alone. As for the doctors ‘wining it’ I reckon that’s entirely true though they fly not by the seat of their pants but with a great deal of knowledge behind them. Even so the human body, in the form of my husband, refuses to conform and we have some unexpected though reasonably well known responses. Oh that it were over. Thanks, Jim.