Thursday, May 01, 2008

Waiting for the other shoe to drop.

In my last post I mentioned that the biopsies that were taken and analysed did not show a return of the cancer. On going into the next round of treatment - which I had hoped would be the last, the doctor - in a moment of reassurance mentioned this fact while obtaining my consent to the procedure he was about to undertake. What he also mentioned, which was NOT so reassuring, was that another patient had had similar symptoms and that HIS biopsies had also come back negative, but when he died some time later, an autopsy revealed that the cancer had returned elsewhere.

If this was meant to be reassuring, I am afraid it did not quite manage to make it into that category.

As an example of the joys of the Public Health system I was invited to attend the Canberra Hospital at 11 am for this procedure which was - as I understood it to dilate the blockage at the join between my remnant oesophagus and remnant stomach.

Little did I know what lay in wait for me.

Arriving fashionably early - around 15 minutes to 11, I was told to go to "Admissions" across the corridor. Having done that, I followed some more interesting instructions which were to push a bell and await the joys of being interviewed, no doubt about my reason for being in the hospital and to fill out the admission papers.

A few minutes later a charming person came to fetch me from the waiting area and ushered me into her office. Here I was treated to the joys of the admission procedure which included telling my story (again) filling and signing forms for Medicare, my private health insurer, an agreement to pay the bills etc etc and eventually I was given a sheet of paper to take back to the Gastroenterology Department.

Here there was great attention paid to the documentation and I was finally given a referral to take to yet another part of the hospital for an ECG.

Finding this on another floor - yeah you guessed it - I was told to wait in a waiting area until they could do my test. Meanwhile of course time was flying and it was now way past the hour I had been told to report to the hospital. Still I hoped that someone knew what they were doing so I waited.

Finally a charming young woman called out my name and we proceeded to another room where numerous electrodes were attached and my ECG was obtained. Then back to the Gastro department. Here finally I was told to wait for a nurse who would insert a cannula.

A male nurse called Ramon called out my name and I got up to follow him. Meanwhile another couple, a charming old man and I assumed his wife had also started to follow him.

I made one of those charming noises that one learns when wanting to draw attention to oneself and both the elderly couple and the nurse turned around to give me a look.

"You have to wait your turn", said the nurse. "This is my turn I responded, you did ask for Garas did you not?"

Confused the poor man looked at me - looked at the old couple and looked at his documentation.

"Garas Peter George" he said. I looked apologetically at the old couple (privately wishing he had turned up his hearing aid) and mumbled, "Yes that's me!"

Confused the old couple went back to the waiting room and I was ushered into a largish room equipped with beds and told to change into a flimsy cotton surgical gown and then told to wait.

My bed just happened to be situated under a wonderful airconditioning duct that was blowing cold air - great!

Ramon (from the Phillipines) returned and - slick as you please he inserted the needle added the additional bits that made up the cannula and taped it up.

I was now there in bed with a single cotton 'blanket' and wondering what was coming next.

Being an idiot after nothing had happened by 11:45 I actually asked. I was told that I had to await the doctor who would obtain my consent to the procedure I would be having. 'Fair enough' I thought, and then asked the next question - "when might this take place since I was told to get here by 11 am ?"

"Oh the doctors always come here after lunch" I was told.

Say what?

"And when might this be - approximately?" I hesitantly asked.

"Right after their lunch about 1- 1:30 pm."

Lovely I thought, here I am freezing my arse off, having been told to fast since midnight last night, not being able to take any of my medication including the pain medication and it's going to be a few more hours yet! Wonderful!

I did ask for another blanket and I was given one straight out of the heating unit and it was simply blissful the warmth of the cotton blanket was a welcome relief to my aching body. Alas it did not last long under the influence of the cold air coming from the air conditioning unit!

At around 1:30 my doctor did arrive and obtained my consent to the procedure and told me that he would be able to see me reasonably quickly.

I waited.

Around 2:30 I was again terribly uncomfortable with the cold and the pain I once again dared to ask if perhaps since I normally took at least three sets of pain killer medications whether someone could think about giving me something for my pain in some manner that did not require me to take pills by the normal means - ie with water.

"You will just have to wait" was the response.

By now shivering with the cold and in intense pain I asked whether I could simply get back into the clothes I had arrived in - namely some track pants and a parka with pair of warm fleece lined boots.

"You will just have to wait", I was told "This is not the Private Hospital system if you get up to leave now you may not get back in for days or weeks!"

I managed to pull my parka from the bottom of the bed and wrapped it around the top of my body to try and get some warmth and started to try various different positions on the little bed to get more comfortable and to relieve the pain.

Another patient had gone and returned from her procedure and was crying softly asking for pain medication.

You guessed it - she also got the "you will just have to wait" message.

As her cries got louder and louder one nurse who shall forever remain nameless, said under her breath, "for Christ' sake get someone to give her a shot so she will shut up!"

Soon thereafter someone arrived to give her a shot and no doubt also suffering from the cold she actually did get dressed in her track suit and then crouched crying softly in a chair until the medication took hold.

Meanwhile the clock ticked mercilessly on!

At around half past four there was finally some action - an orderly came to take me up to X ray.

XRAY? I did not want to have an X ray I had been exposed to too much radiation as it was!

I was wheeled off by this stage absolutely numb from the cold and in pain that had moved from being just annoying to a level of pain that left me absolutely in agony.

We arrived outside the X ray room and patients were virtually double parked waiting for service.

Amazing!

A poor old lady with her daughter in attendance - sucking anxiously on her oxygen bottle was waiting for an orderly to take her back to her room. She looked in a bad way and made soft protesting noises and asked questions in heavily accented Italian from her daughter. I recognised the accent - Calabria!

Her daughter - more solicitous than the other staff, asked me if I was in pain - my facial contortions must have given her a clue! I responded that I was, but that there was nothing she could do about it, so please don't worry. I then pointed to her mother and asked "from Calabria?"

She told me yes with a really surprised sound in her voice - and asked how I knew - was I Italian?

'No,' I responded, 'I came across many Italian accents when I worked for Immigration way back in the 1970's and have not forgotten." She asked if spoke Italian and responded in what I hope was a good northern accent that I only spoke enough to order food and to ask my way.

Both she and her mother laughed at that and I felt good about being able to make someone else feel at ease even when my own situation was less than perfect.

An orderly finally came and she was wheeled away waving a fond farewell to me with her daughter wishing me well on my procedure.

About 4:45 I was finally wheeled into the X ray room and of course my doctor was there wearing a lead lined smock and being uncharacteristically quiet and withdrawn. I complimented him in what I hoped was a jocular fashion on his fetching lead lined outfit and he barely registered a smile.

I was given my needle to knock me out and things proceeded - the next I knew I was back in the freezer waking up and being told that the procedure had not gone well - I could not be adequately dilated and that we would have to do this again the following Monday - this time at 8 am!

With that the doctor was off and I was left to get back into my clothes and be taken home by my partner.

Quite a day.

I spent the night and most of the next day trying to recover from the pain and from the cold! It seemed to have seeped into my bones!

Can't honestly say I am looking forward to next Monday!

This next time I will NOT be taking off my clothes until they are ready to wheel me up to wherever they wish to take me - even an old duffer like me can learn from experience!

I wonder if all public hospital patients have similar experiences to the one I just had - if they do then critique of the health system is actually understated!

2 comments:

Russell said...

Peter

Your experiences are by no means unique, but very instructive.

The heightened awareness we have when confronting medical or surgical procedures makes us particularly vulnerable to clinician insensitivity.

Perhaps I could just urge you to be thankful for small mercies, such as the incident free insertion of the canula!

But I won't be so facile - I would like to be able to use your story in challenging clinicians to lift their game. The next opportunity I will get will be at the TCH Clinical Board on Monday afternoon.

Happy to de-identify and de-personalise it if you wish, but it is only by challenging people with such first hand perspectives from consumers/patients that we will ever get them to walk the walk of providing the patient centred care they say they are trying to provide.

With all my best wishes for a more satisfying outcome on Monday

Russell

Darlene Cox said...

This is an amazing account Peter, I'm very sorry that you experienced this. I have been wondering how you are getting on.
Your eloquent account would make excellent reading by the Consumer Engagement Team at the hospital.
I'm happy to support you in taking this further if you would like to.
Fond regards
Darlene