OK, this is my first diary. Now, as an American living in Australia, I know both similarities and differences in comparitive medical systems. From a personal perspective, it hardly matters.
The History of a Cancer Patient
from the first mistake to the final outcome
Marion Campbell Elkhorne
17 November 1946 – 29 August 2005
In memoriam
This story needs to be told. I've tried twice before to begin it; maybe this time, after 18 months, it will get finished. If language and quiet rage upset you, turn away now. If you continue, do not expect objectivity. By the time you finish, I think you will see it is not possible.
1.Introduction - 2004
We moved to Far North Queensland (FNQ) from Melbourne. Partly to get away from family! and also from drab skies, rain, and depressing weather. Marion and I and Inu the dawg arrived at our new home on 10 December 2003. The first week in June, 2004, Marion had to take the first of several trips back on Melbourne on behalf of her aged mother.
Stressful circumstances probably led M to know or suspect some lurking medical problem within herself.
I'm guessing the first visit to a local doctor, hereafter referred to as QuackO, was somewhere around early July. Hindsight is strange, you never realise at the time when a disaster is looming – and who keeps notes?
Trying to reconstruct this chronology, I started with M's sent email. Her computer had died right after she did, but I got the hard drive out and connected to my desktop computer. Even with messages from January 2004 through August 2005, there are still gaps and missing details. I lived through it but some is a blur. Later, to heolp the chronology, I retrieved an old email archive – not that Outlook Express makes that easy!
I do remember the first visit to QuackO; we saw him together.
Now, I would have thought with a new patient, at least a cursory physical check would be in order. But no. QuackO sat at his desk, mainly, as someone described it later: He only really talks to his computer. Yair. Maybe he has a phobia about touching people?
All he seemed interested in was M's family medical history. M had had cervical cancer before my time, around late '80s, I believe. Even worse, her mother had colon cancer some years before but recovered from that. These clues were an aha!
QuackO's solution was to prescribe a colonoscopy for M. That was it for the first physical exam. Yeah sure.
This could be done right in Ingham, we were told. Pity QuackO did not think to suggest we could also go to Townsville and have it done more quickly than actually transpired. Ironically, M went to Townsville for a mammogram on August 30. On August 31, she was checking with Ingham hospital [again] about that colonoscopy. One might think that perhaps a newcomer to FNQ would not know the ropes – that the expert only came from Townsville to Ingham occasionally, and there was a waiting list.
At this time, M had written in an email, "always tired." But, for one who was often known as "Mrs. Over-do" maybe it didn't seem significant ...
On September 2, she wrote "email: "and now dr. insists on all these tests". In light of subsequent events, I have often wondered why a blood workup was not the first check. To be sure, there were frequent blood tests later in the saga.
Early October, Marion went to Melbourne yet again on behalf of Alison, her mother. The family had been trying desperately to get the woman properly assessed by the government experts. "Oh, she's fine," they concluded. How easily they accepted her lies at face value. For three years.
This trip was particularly stressful, the combination of Alzheimer's and hubris of an old woman meant she had to be tricked into being placed in a nursing home.
October 18, another visit of QuackO, no details.
November 11, finally. I understand why Ned Kelly said: "Such is life." The colonoscopy is attempted. Painful. Incomplete results, partly due to scarring from a hysterectomy back when. The preparation for the ordeal was M's first experience with the glop required, drinking a lot of it. And which started the chronic nausea and vomiting ...
QuackO was not satisfied with the colonscopist's report and decided a barium enema was the next step. Once again, I'd gone along with M and asked, "What would an x-ray reveal?" Tsk, how rude of me to question an "I am a tin god who's been to medical school!"
"Nothing!" he snarled.
Well, I don't recall I ever went with M to see the stupid arrogant bastard again. Meanwhile, M is still feeling poorly from the glop.
Nonetheless, we had a short trip to Paronella Park on November 16-17. The magic 17th being M's birthday and our wedding anniversary. Despite being sick from lunch on the way up, M had recovered and ate very well that evening. And we had the night tour of the Park. M had an extended conversation with the owner, who suggested we could return early in the morning for photography. And early was ideal, idyllic even, wandering around with no one else cluttering the place.
On November 24, M mentions an earache. Inconvenient but seemingly nothing to worry about, even though she must go to Melbourne the following day. Now, at this point, I have to acknowledge the inconvenient truth that M had a very high threshhold of pain. And stubbornness to boot.
M flies down on the 25th and the next morning, the pain is so bad she has to find a clinic. Oh dear, a perforated eardrum. Drops, pills. M remarks in passing to her brother later about the problem – with typical empathy, he calls her a "drama queen". Glad I wasn't there. But just one clue why we left Melbourne.
That final trip to "Mexican territory" was by choice; due to the auction of Alison's house in Brighton. Just as well she went: bro would have passed it in and waited for a better offer in future. Meanwhile, interest accumulating for the nursing home which is waiting for the lump sum payment for Alison's care. Thus the necessity to sell the house. Well duh!
M mentions in email on December 2 that the ear is still bothering her.
We're due for a trip to Townsville for the barium enema. But there's a screwup on their end [one of many yet to be seen] and it's rescheduled. So we go down on the Sunday, 5th, staying overnight at Cedar Lodge.
Bit of a bummer for M ... 36 hours fasting, more glop but procedure done. Uncomfortable trip home, M couldn't even manage retail therapy!
From M's emails,
December 9:
"just had 24 hrs in bed, have not been at all good since Monday's test.After each test, the pain I am having gets worse and worse."
December 11:
"results of barium enema, some areas of diverticulitis is all ... cannot eat, constant wind and vomiting"
Due to this, another visit to QuackO. He prescribes a Maxilon shot, tablet, AND more glop ... I'd been waiting in the car, hindsight says this was an error on my part ... and hearing about umm, ColonLyte it may have been ... WTF? If some makes a person sick, why prescribe more???!!
December 15: Wednesday is not a good day for a medical problem. Well, this is FNQ and the Ingham hospital is closed in the afternoon.
Marion had had a bad night and in such pain during day, we knew something needed to be done. Ingham hospital became the first target. The street parking was non-existent. The main door was closed and the directory sign was useless. Of course, a local would know you go around to the side to what looks like a separate building to find the emergency room.
Success and we actually found someone on duty!
Within minutes, a doctor was summoned. Nothing like QuackO. He listened to what we had to say, physically examined Marion, took no time at all to order ... an X-ray. That evidence was soon inspected and he's on the phone to Townsville General Hospital.
Their swift conclusion: "Get this woman in an ambulance and down here immediately!"
At which point, I race home, throw stuff in bag, arrange for someone to look after dog, drive swiftly to Townsville. Got to say, that Toyota Echo flies!
Marion goes into OR about 11 pm, op lasts til 4 am, she had heart attack on the table. They tell us next morning she was not expected to survive ...
But she did. That was the good news. Tough and stubborn was Marion.
December 16: Then, recovery, tests. Biopsy: cancer. CT scan, inoperable liver secondaries. I return to Forrest Beach, see friends re Inu the dawg, no problem. Pack some clothes.
December 17: Tasmanian friends scheduled arriving on train, out of contact so I drive down to Townsvile again to meet them. They're surprised I'm alone and I explain. We visit hospital. Marion says, "They came all this way to see our lovely home in Forrest Beach. Go along, I'm fine."
December 19: Return Tassiefolk to Townsville train station. I'm really getting Bruce Highway [our national highway, ha!] burnout.
December 21: Several hospital visits over these two days. More than once Marion chases me away, "Get out of here for awhile, go buy something you want." OK. And I pick up some things for M at Willows,
On return to Forrest Beach, my "report on M" group email [20-some e-addresses] summary of events. Friends reply in support. Later, I learn someone [you know who you are and you have to live with it, bitch] calls the hospital and blows shit out of M because she did not get a personalised notification ...
December 24: Meeting with oncology, release, slow trip home, stop at Frosty Mango ...
A few quiet days, just being together. I guess a few friends phoned, maybe even family, but no email clues or notes. Sometimes I just draw a blank. Oh, I do recall we went shopping the following week as M wanted "lots of Christmas lights even if Christmas has passed." And I rigged up about 400 of the twinkly, blinking multicolours under the verandah.
December 30: Bladder infection. QuackO pontificates: you get these things in hospitals. Antibiotics prescribed. [effing wonder drugs, say I]
And that was the year that was.
IDLE OBSERVATIONS
I contemplate the damn arrogance of some bloke who starts with Accounting 101 and finishes medical school with his "I am a god!" badge [advt. 9 carat., $59.95, refundable from first patient]
There must be a term for a phobia about touching people. That would explain the reluctance of QuackO and his ilk to touch a patient ... but why would someone like that go to medical school anyway? Oh yeah ... "It's the money, stupid!" And of course, the hubris absorbed means the selective deafness of never listening to a patient. Or her partner.
See, way back in the story, I had asked about an X-ray. This was no idle question but prompted by having heard from a new acquaintance about her husband's medical problem. As usual, all the fancy tests revealed nothing. Other than large costs. They told her nothing was wrong with him. Uh huh ... "So why is he in pain?"
That specialist said, "Well, the only thing we haven't tried is an X-ray but I don't expect to find anything. But we'll do it."
Woah! A great surprise -- one large tumour wrapped around the outside of the upper colon. And yes, the exact same condition for Marion.
I will never understand rationally why the obsession with antibiotics for anything and everything. And other pill pushing ... cynicism suggests B&B ... not "bed and breakfast" but brainwashing and bribery.
The hard part comes next ... 2005 ... (coming soon)