MEDICAL NEGLIGENCE. WHY NOT JUST SAY SORRY?


The initial freak-out at being diagnosed with prostate cancer soon turns to acceptance. In my case, eight months after being diagnosed I was into my fifth month of hormone therapy and had just begun radiotherapy. The first day of the latter was my 57th birthday.

I was quite happy to ride down to Newcastle on my Triumph Thunderbird every morning for two months. It was a 180km round trip and I used the time on the road to compile the beginnings of a novel based on the experience. Unfortunately, I never got past the title Riding to Radio.

Anyway, none of this was too distressing; a quick ride, a short wait, five minutes under a giant machine that rotates around you, dress again, sign a Medicare form and you're off home. Little did I know what I was in for.

The Calvary Mater Hospital in the Newcastle suburb of Waratah has extensive cancer treatment facilities. They had, and still have, four radiotherapy machines, which went by different names; Lawson and Phoenix are the only two I can remember.

Two of the machines were new and two had served their purpose for quite a long time and constantly broke down. Patients were allocated one particular machine, which had its own staff. When a machine broke down, we were assigned to another, usually newer, machine.

The Mater was being enlarged and renovated during 2007-2008. I don't know whether this contributed to the problems with the old machines (although one morning an electrician sliced through the main cable to the radiation bunkers), but they seemed to be constantly off-line.

A quick explanation here: prostate cancer patients lie flat on their backs while the machine targets pre-arranged sites to blast with a dose of high-level radiation. There are four cardinal points (think of them as north, south, east and west) that the machine stops at to administer radiation.

The machine is carefully programmed to target just the cancerous areas of the prostate. Collimator leaves  in the head of the machine assume the shape of the tumour at each of the four points. Between rotations the patient can hear the leaves forming the new position required for the above, below and two side positions that radiation is administered.

On three occasions (December 20, December 21 and December 24) the Phoenix machine under which I had been carefully aligned, became stuck at the north-east  position. Instead of hearing the collimator leaves whirring into a new position, I heard them collapse, then the radiation buzzer went off and I was blasted holus-bolus with radiation to my entire body.

I didn't know this at the time, but was savvy enough to mention it first to the team of nurses who attended the machine, then to a registrar, who was filling in for the regular specialist.

The replies were along the lines of "No, that couldn't have happened"  to "Perhaps they were taking a portal image".

First, I hadn't imagined this. It did happen. And, second, because portal images are always taken from the cardinal points and never off-centre, I knew this latter excuse was bulldust.

By the third week of January, I'd finished the course of radiotherapy and happily trotted off to assume normal life. But within a couple of months I had testicular pain followed by some kidney twinges. The former could be excruciating at times, but remained a mystery to specialists and my GP alike.

In the end it was my GP who suggested scans and ultrasound. These revealed lesions on my testicles and kidneys that hadn't been there before the radiotherapy (I have the pre-radio scans to prove this).

Shortly after, I suffered a partial collapsed retina in my right eye and lost the right-side peripheral vision. Then, about a year after finishing radiotherapy, a CAT scan found that my right ureta (the tube from kidney to bladder) had a stricture that two specialists said was radiation damage, something that is practically unheard of since radiotherapy improved its targeting techniques.

In order to save the right-side kidney, a uretal stent was put in place by the one specialist who did public hospital work. It only lasted three months because of pain and the loss of a lot of blood through my urine. A replacement, this time made of silicone, was fitted and I was assured it would last for a full year.

Things went well for about four or five months. I couldn't stride out on walks as I once had, but there was little pain aside from a jabbing sensation to the kidney. Then I started pissing hot crushed glass. In fact, hot crushed glass mixed with chilli.

I've always prided myself on having a pretty high pain threshold. I'm no wimp when it comes to gritting your teeth and bearing it. But on a couple of occasions I've nearly passed out while urinating, such is agony. Of course, I've had all the tests to detect growths and infections, but it turns out it's this bloody stent that's causing the problem. The stent I wouldn't have needed if the Phoenix team members had monitored me properly during radiotherapy.

I emailed the Mater's Chief Radiation Therapist and explained what had happened. I said I didn't intend suing the hospital just wanted the matter cleared up. She replied saying that the buzzer I'd heard while the machine's head was in the wrong, non-cardinal position was the "last person out warning", a button the last nurse to leave the bunker must press.

This was patent nonsense. Yes, there is a last person out warning, but this is quite distinct from the quite separate and distinct buzzer that sounds during the release of ionizing radiation. I pointed out in a return email that when portal images (X-rays) were taken, they were not only at the cardinal points, but also had no sound at all associated with them.

I also mentioned that I had tape-recorded my last session and thus had a record of the two different warnings.

She replied that the collimator leaves "are interlocked with the treatment process: the machine will not turn on if they are not in exactly the correct position as was planned". Well, I've got news for you. It 'aint failsafe.

Look, I could go on, but the short story is that I got no satisfaction from her responses. I assured her "I'm not about to instigate litigation. I'm just interested in determining causes", but I don't think the message got through and I gave up in the end, which was probably what they wanted.

However, the recent grief I've suffered with this bloody stent has got me all steamed up. I know I can't change anything. This is what I've been handed and I just have to put up with it. I never think about having (had) cancer. It's just an inconvenience that you live with. But I can help those out there who may be about to have radiotherapy.

Here's a tip: Take someone with you, preferably a grandchild, who can sit in the observation room with the staff and watch grandpa under the machine. This will ensure you ARE being monitored and if something goes wrong they can hit the kill switch (sorry, motorbike term).

Also, if you have your radiotherapy at the Mater, insist on a new machine, not one of the old clunkers. I was polite, humble (as is my nature) and demurred to all suggestions. Don't make that mistake. This is your health. You only get one chance at life and good health so don't let someone else stuff it up for you.