OK, here’s what’s ACTUALLY happening (or not) with the surgery

Posted on November 17, 2011

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It has been a while since I had a rant and I think this is a good one.

Back in May, an alert and conscientious radiographer (or whatever they’re called – the ones that do the X-rays) pointed out to a doctor in the Emergency Department at Calvary Hospital here in Canberra, that there was a suspicious shadow on one side of a just-completed brain scan of my noggin. A second scan confirmed the presence of an aneurism. Calvary not being equipped for that sort of neurosurgery, I was referred to the Canberra Hospital.

Jump forward a few months. By then I had seen the neurosurgeon twice, been referred to Royal Prince Alfred in Sydney in expectation that the aneurism could be treated by far-less invasive procedure called ‘coiling’ only to have RPA advise that my particular little beastie was too broad and therefore unsuited to the procedure. So I was down for the full brain surgery. Come September I was finally booked in for surgery on 20 October and to attend a pre-surgery clinic in late September.

One of the joys of my life (not) is to have a thing called Crohn’s Disease. For the last five years I have been treated by an immune-suppression drug each eight weeks by IV at the Canberra Hospital. This particular drug regime has been fantastic in keeping my Crohn’s under control, especially compared to the previous few years which contributed to my finally being kicked out of the public service onto invalidity. That’s actually over five years, people, so we could be excused for thinking that this would probably appear somewhere reasonably prominiently in my hospital records.

I saw the surgeon twice and there is no way at all that I would have failed to tell him what medications I am on, including that eight-weekly administering of the immune-suppresant. I also saw his registrar at the clinic in September and I not only told him about that drug, I even told when my next scheduled appointment was for. No concerns whatsoever.

Come my next drug infusion on 15 October, five days before the surgery, I informed the doctor examining me prior to authorising the treatment, that I was scheduled to go under the knife on the 20th. His precise response was “that’s not a problem.”

On 17 October, I called the Gastroenterology unit to enquire about the possibility of having my next infusion done in Victoria as I was intending travelling down there to recuperate with family after my brain surgery. They went into full panic mode. “You can’t have surgery so soon after that drug infusion!” An urgent consultation with my gastroenterologist was to occur and a return phone call promised that day. By late afternoon, not having heard anything, I made contact with the gastro myself. He confirmed that the surgery had been cancelled and advised that due to the presence of the immune-suppressant in my system, any post-surgical infection could well have killed me and that I should have never been given it. At this point I was told the surgeon had no record of my being on that particular drug. Huh? Don’t any of them listen to what their patients say in answer to their questions? Or read their own hospital records?

The next day, the hospital’s Surgical Bookings called to ensure I was aware that my admission for the next day (surgery the day after) had been cancelled and made a new booking for admission on November 16 and surgery on November 17. This was a direct hospital response to the surgeon cancelling the October surgery.

On November 14, someone called me at home, identifying themself as one of the surgeon’s team and wanting to confirm what medications I was on. They confirmed that surgery was this week.

November 15, I received a call from the Gasterenterology Unit, advising that in accordance with my gastro’s instructions, my next drug infusion had been delayed to December 21, four weeks after the scheduled surgery.

Come November 16 ie yesterday, I duly turned up at the hospital – five minutes early even. The Admissions area was expecting me, worked through all the paperwork and sent me up to the relevant ward. But the ward staff said they had no knowledge of me coming at all. But not to worry, they had a bed spare.

The surgeon’s registrar came and saw me two times, the second being to discuss the procedure in detail. Now I am told that rather than going through a smaller hole through my forehead as previously described in detail by the surgeon, the procedure is now to pretty much remove the left-hand side of my skull, exposing the entire top of the brain. Yikes. “Are you sure about that?” I asked, indicating what the surgeon had described. “No, it is definitely being done this way,” was the answer. I was then advised that I was first on the operating list for the following morning ie today. Pretty reasonable assumption that it was all going ahead, one would have thought.

The registrar then made a surprise third visit. He had just spoken to the surgeon who had stated he was not expecting me until next week and he refused to operate until next week. Bare in mind that I had already been admitted and was by then laying on the bed munching the solitary sandwhich which was all they could scrounge up for my lunch. And this was afterall the surgical appointment made by the hospital, presumably in line with the surgeon’s instructions.

With this being the second cancellation, I was not best pleased. To put it mildly. To be perfectly honest, I was now so pissed off that I quite honestly wanted to punch someone in the face. And I am not a violent person. Noisy, yes, but not physically violent.

Cutting the story a little shorter (believe it or not), by later that afternoon I was talking to the registrar once more, now by telephone. Now the story changed. It was confirmed that I had been scheduled for surgery today but after my admission yesterday, the surgeon simply changed his mind. After my admission.

I am a full-time university research candidate. In second semster I had paid tutoring work lined up but once it became apparent that I was to have surgery during the semester and go MIA for some time, that opportunity was lost. While I needed that money, I thought it was a fair trade off so that I would have the surgery behind me and be back on feet enough to be able to attend family functions later in the year.

Once the October date for surgery was confirmed, I immediately applied for a formal Interupption to Study with the university. What I was not made aware of until later was this meant that I was deemed not to have been there all semester, thus losing credit for any and all milestones achieved during the semester. So the best part of a semester’s work has been largely wasted.

With these delays that are all 100% the cause of the Canberra Hospital, I lost my paying job for no good reason as I could now have done that tutoring job. With surgery scheduled for today, I had to now stay in Canberra until after December 21 when I could get my next drug infusion as it was ‘impossible’ to transfer the treatment to Victoria. I sure as shit cannot afford to head down south as planned and also have a return air flight to get the drug infusion. Only now the surgery has been postponed again to next week, pushing that infusion date back to December 28. So now not only do I lose that care and support from family post-surgery, not to mention missing the eighteenth birthday of my niece and god-daughter, I am not even allowed to have Christmas with my aging mother and the rest of the family. Unless of course I delay the drug infusion even later, but by past experience, by that time I would be just about reduced to crawling onto the return plane – that’s how sick I can get, quite quickly.

Let us not forget that despite the involvement of the surgeon, his registrar and another doctor employed by the Canberra Hospital, it was only the intervention of a non-medical person that saw me avoid being operated on in such a potentially deadly situation. 

Now when discussing things with the registrar by telephone yesterday, he told me that they cannot be held responsible for changing circumstances. Excuse me? What changing circumstances? Has the surgeon or the registrar seen me since the surgical appointment was made? No. Has there been any form of medical examination post-15 October? No. Has there been so much as a blood test to indicate that there was too great a presence of the drug still. No.

What an absolute load of bullshit.

I suffer from depression and related mental health issues. This building myself up for surgery and making many arrangements and other accomodations, only to have it twice ripped out from under me by hospital screw-ups, is having a pretty detrimental impact on that mental health. Trust me on that one!

I hit the roof with a very senior hospital adminstrator late yesterday. She first tried to tell me that I would have only been bumped from the surgery list in order to accomodate a more urgent, life-threatening case. Now if that were the position, I would most certainly have not been complaining. I’m probably not going to drop dead tomorrow from this beastie in my head and if someone else’s life was going to be saved by pushing me back, then fine. Except that wasn’t it at all! I already had it from the surgeon’s registrar that he had simply changed his mind. And the registrar admitted that he couldn’t guarantee that the surgeon wouldn’t change his mind again next week as well.

This senior person assured me I would have a return telephone call from her by about 1pm today with a full explanation as to what the hell is going on. It is 6:38pm as I type and nope, no call. Nor an email. Nothing.

It should also be noted that I previously instructed the hospital that after another issue regarding this particular surgeon, I did not want anything to do with him in future, thanks very much. Guess who they kept putting on the case. Clearly my wishes amount to jack shit.

Now if this lot cannot read their own hospital records to know what drugs I am taking, are incapable of taking note of what I have told them in three seperate appointments about what drugs I am taking and yet another doctor authorise the continuing use of that drug despite being told of surgery occuring in five days time with only the intervention of a non-medical person saving me from potentially being killed by their negligence, not to mention this fart-arsing about with surgical appointments and changing of minds after my admission, is it any wonder that I am having major doubts about their ability to actually remove the side of my skull and go digging around in the old grey matter without totally fucking me up?

Oh – and has the hospital ever apologised for any of this? Well the gastroenterologist did in that phone call back in Octobedr, but it wasn’t his fault or that of his staff. In fact it was an alert member of his staff who possibly saved my life. But the hospital in general? Nada. The surgeon? Don’t be silly – he won’t even speak to me but just send other people to fuck me around so why should I expect him to say sorry? Never mind that his negligence just probably would have killed me.

I am taking legal advice to hopefully sue their collective arses off. And seeing my GP asap to try and arrange someone else.

Congratulations, ACT Health, for yet another stirling effort! It really takes skill to so consistently and utterly FUCK IT ALL UP.

URGENT UPDATE – with apologies to Kellie Lang of Canberra Hospital. She has rung me at 7:04pm, working quite late, to give me an update. No, things are far from sorted out yet, but she is taking this very seriously. Unfortunately I am too pissed off still to be bothered with editing hence this postscript.

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