Part Two: 2005
Marion Campbell Elkhorne
17 November 1946 – 29 August 2005
In memoriam
Imagine having an emergency operation ten days before Christmas. Then you learn it was five hours on the table during which you had a heart attack. They tell you, "We didn't think you'd make it!"
But Marion did, too stubborn to give up.
And a CT scan was the next step, just checking. Oh. "There are secondaries in the liver. Many spots. Inoperable." The liver can regenerate but not if it's been Swiss cheesed. Next step is to consult the oncologist.
See ya on the flip side ... warning! this is a very long diary ...
Marion was released from the hospital on Christmas eve. We head home. Rather a somber ending to 2004 but we can't succumb to depression. I put up Christmas lights on the verandah. (We live in a Queensland highset, "a house on poles" as it were.) I never knew anyone who enjoyed Christmas more than Marion.
The New Year arrives. We're scheduled to meet the oncologist at the hospital in Townsville on January 4th. That's a 250 k. round trip. I reckon the Toyota Echo could just about do it on autopilot. Marion loved to drive and in the early months, she did part of the trip.
So. We get there, stop at the desk to check in. Bloke there looks at computer, no, you're due here on the 6th. End of story. Grrrr.
Rather than waste a trip to 'the big city' we do some shopping for items unavailable in our nearest country town, have lunch, start back. Repeat the trip on the 6th. This time, there's a woman on the desk, not the fat lazy boy. She says, no, you're booked in on the 10th. Argh! I'm ready to go postal. Marion says quickly, "Please verify that with the oncologist."
Lo! within five minutes, we're in his office. He'd wondered why we had not shown up on the 4th! And reckons it is not the first time that idiot screwed up. Maybe it was the last, we never saw him again. Anyhows.
Onco gives his little speech about chemotherapy and his bottom line is, "If it affects quality of life, we stop." Sounds good to me.
Marion and I had discussed options. I said I would always have some input but, as it was her disease, she had the final say. So she was willing to give onco's approach a go. He preferred starting with Xeloda tablets. That precedure was two weeks on, one off, a checkup and booster drip as necessary. OK.
Also, a blood test from the Ingham hospital, with emphasis on a CEA factor, the day before the next appointment.
So, it begins. Pills with breakfast. Initially, minimal side effects. Our next visit down, we learn the CEA after the op had been 368. Way not good. But after only one fortnight of tablets, the reading is 61. No 'injection' as he called it necessary. Great!
We leave there, celebratory shopping, a nice lunch. And te process continues.
About this time, M writes an email to a friend in Florida:
Too many people, too many phone calls
Have to go into town tomorrow or Wednesday, need my blood pressure tested and another medical certificate for Centrelink who have once again cut off my allowance, this time retrospective to November 5th.
Centrelink being our version of ~Social Security~ and just as efficient ...
Jan 15 - Dr. gave me a Medical Certificate from December to forever. They hummed and haahed, still have to hand in forms, they can still try to find me a job. I have heaps of forms to take back to Dr in a fortnight re a disability allowance for me and a carer's allowance for Joseph, this would give him an extra $90 per fortnight.
I never claimed this, too much other to do than fill out endless stupid forms ... Also never claimed any of the wonderful $22 travel allowance of the many trips, most wasted time & paperwork I don't need. Curious, that allowance has not changed in ten years, I'm told.
Jan 14 Maxolon for nausea [from tablets]
Jan 15 - I cannot cope with weeping and wailing down the phone so simply say "I cannot afford to cry so I am going to hang up now".
Jan 16 - A week of chemo "drugs", 3000mg per day, so far so good, isolated incidents of nausea and itchy hands and feet is all, plus a slight drowsiness sometimes
Jan 18 - Energy levels returning, appetite better than for nearly a year. Feeling good. Up and at em at 5am, tire by midday so have a rest, then on with the day once more. Walking around instead of doddering as I was when I first came out of hospital.
Managing cooking, tidying, washing, light household cleaning etc and light gardening, no heavy weeding, have a man from the village in on odd occasions to do heavy stuff. Can now drive again ok, but not on the long trips, we share that one.
Jan 19 - Centrelink sent Marion another Jobseekers card.
On January 23, two of her daughters flew up from 'down south' to visit, one very pregnant. On arriving, they reckon the rain could flood the highway and they'd get cut off. So we get to take another trip to Townsville ... sigh ... I didn't say anything but thought grimly, Why do we always have to be inconvenienced? Then I remember why we moved from Melbourne.
The following day, her cousin and family arrive for a two day visit.
January 27, another trip to Townsville for post-op checkup with surgeon. But a long delay at hospital gets us back to our beach village well after dark. Two tired people!
February 2, see oncologist. CEA down to 31, yay. No 'injection'. On the way home we turned off the Hwy and stopped at a little place called Balgal Beach. A very pretty spot, got us a decent meal at the small but plain licensed cafe there.
Another M email:
I have a large number of snail mail letters to write today.
This is difficult because of the reactions of old friends. Some ring crying, I tell them I gonna hang up, need my strength to fight, not cry. Others say - let's
not mention that nasty other business, how ya doing after the op and the heartattack Others don't reply to calls or e's cos they don't know what to say, some tell stories of everyone they know who has had cancer, with whatever result. Tis difficult
Feb 12 - Interview from Home Care was conducted over the phone which was great, just took up heaps of time. They agreed we qualified, then rang back to say they had no funding and were passing the case over to the Blue Nurses who have the funding for home help this year.
Our next visit to onco yielded great news: the CEA was down to 8. He said, "Anything under 10 is just about normal." This proves the chemo is targetting the cancer cells. Side effects have been mild nausea occasionally, itchy and scratchy skin, and drowsiness. A small price to pay when the drug is doing its job.
Feb 22 - We are both tired after yesterday's outing. I am feeling a tad icky.
We stopped off at Paluma Village high up in the rainforest on the way home, it is beautiful if one can cope with the drive and the corners and lack of road width. We visited the local Pottery owned and run by a guy from Bacchus Marsh who has been there since 1983, fabulour stuff from local clay, reckons he makes a good living out of it.
Joseph is still chuckling about the fact I have jumped out of an aeroplane but cannot cope on the narrow twisting road with all these deep ravines and streams and huge boulders. I got out of the car with no sense of balance whatsoever.
Other Marion mentions of doing things include dinner at a friend's place, a wine tasting another place, occasional shopping trips in Ingham. We've learned to pace ourselves accordingly. Trying to live as normal a life as possible is important.
Mar 4 was another visit to QuackO. I had suggested some time back that maybe another physician that didn't virtually have a wooden mask and spear would be a good idea – but for some reason, 'changing horses in midstream' was not an option. Well, as I said, her disease, her choice.
This visit was due to a pain in the right side. Compounded a day or so later by a summer cold. Which I inherited too.
We had a great dinner, friends in, I cooked crab cakes, southern style corn fritters, and so on.
April 6 - Went to Townesvile yesterday, the blood test results were not as good this time as I had hoped but the Oncologist was still quite satisfied. Thinks we have come to a bit of a plateau after the last 3 cycles.
We went to Jourama Falls yesterday. Joseph made it all the way up I didn't tho. I found myself a nice spot in the shade beside some rock pools and plonked there with a book and just absorbed the atmosphere until he came back and we returned down the rest of the way to the car.
Sheesh, the SS idiots rang Marion to announce a job interview! By the time she finished with them, they took her off the jobsearch books. Honestly! do you have to have a lobotomy before you undertake government work?
About this time, M is writing diary notes about the no-longer-pregnant daughter. A granddaughter was born and yet silence emanates from down south. M: "I don't know what her issues are, I no longer have any."
April 12, the pain in the side has never gone away. Onco has decided an ultrasound and a CT scan to find out why. Both he and QuackO are certain it is not the cancer. Tests were done, the conclusion was, It's a viral infection. Say what? And yeah, take these antibiotics. Say double what? I thought this was contraindicated years ago.
April 28, to Onco. Welcome to Bizarro World. Onco and another doctor are looking at the CT scans while we watch and listen. "Oh, what's that there? Hmmm." 'Never mind, what about this?' "Oh yeah ... maybe we need a radiologist to take a look ... "
Just an idle thought, that was. The dynamic duo decide, it's not the cancer (though the CEA had gone up) but maybe it's a side effect of the chemo. Let's stop the treatment and see if it makes a difference. So, no tablets, no drip. Just take more antibiotics and these extra-strong painkillers and see what happens. Yeah.
M: Panadiene Forte, I am to take 8 a day for a fortnite and they come in packs of 10, no repeats, what a bit of a bother. More bloody scripts. Have been in extreme pain and vomiting for 6 weeks ...
May 1 - We are going to Townesville this morning - our time 10:30am returning around 4:30 pm ... Swollen throat maybe glands whatever, can't talk anyway.
May 3 - They have taken me off the Xeloda for 12 days to try and determine if maybe that is causing it. 12 days of only taking painkillers instead of a cocktail of drugs is almost like a holiday I tell you.
May 5 - We had a fun afternoon tea yesterday, resulted in "--" getting pissed, never seen that before, "another" going home and falling into the bed and out the other side, her brother being ok, me ok, "housepest" ok and J a tad under the weather. Found J asleep on the sofa at 11pm
May 9 - We have had a dreadful time with [houseguest]. She wakes up with her mouth in overdrive and continues on all day. A very dangerous creature is a woman who thinks she is a great phsycologist. She slammed into me completely breaking me down into sobs as she believes I have not accepted the fact that I have cancer and am dying. She went on and on at me, in the end I took a pill and went to bed, at this point she then started in on Joseph, telling him he has to learn anger management and learn to deal with the fact his wife is terminally ill.
M should have prefaced this with the fact we'd had a nice dinner on the verandah. And then the housepest told me to 'piss off' as she wanted to talk privately to M. Yeah. I went to watch a DVD and 45 minutes later, the housepest comes to harangue me. Different outcome this time – she ended up slamming into the guest room (pestroom?) not to be seen for 12 hours.
The only reason M didn't tell her to take a hike was the guest had come up specifically for the Australian-Italian annual festival. Once that was over, so was the visit. M said afterward, that is one guest who will never be invited here again.
Blood test on 9th.
And now, another friend writes, wants to visit ... "not a week when you are having treatment and not a week when you aren't well ..." With friends like that ... so M replies, in her words, "As if I could plan this shit ..." and the response to that is: "Seems from your email that you don't want us to come."
May 11 - Still off the chemo, not at all well, pain not even responding to the morphine now so going for an Ultrasound on Monday week. Onco is convinced it is not the liver cancer causing this, but is currently not worried about the cancer says we have to deal with this situation first.
The cancer count was up 2 points yesterday
May 17 - Not doing great. The ct scan confused 4 Drs. One said viral infection, one said don't know. Another said the canceer pics don't look like they should, then there is something they can't identify, also the opinion that there is something else wrong cos the pain and nausea are not being caused by the liver cancer.
May 24 - Went toTownesville Sunday at our own leisure, stopping at Rollingstone for lunch.
The ultrasound showed nothing untoward, just a bunch of organs gone to the shit.
The treatment is to be changed, next Monday back on the Xeloda and start the drip chemo on the Tuesday. More frequent trips to Townesville.
There is some concern about the sodium levels, they have gone way down. (QuackO) left a message yesterday, I will comtact the surgery this morning.
(Onco) has told me to cut back on the water, no more than 2 litres per day, I must be peeing out all the salt I accumulate. Next Monday back on to the Xeloda then start the drip Chemo on Tuesday.
May 26 - The treatment has been absolutely horrid for the last 6 weeks, all sorts of tests have been done, there is just no explanation for the extraordinary
amount of pain 24/7 which has been unable to be controlled at all ... we at last know for sure the chemo is not the cause of the pain.
Today I am better than for weeks and it sure feels good I tell you.
May 27 - Began, finally, to begin feeling better Wednesday, can now manage to get around and do things again. Not happy about the morphine, very high dosage,
but finally some pain management, am aware the pain is always there but can function. Losing my independence tho, I am constantly drowsy so Joseph does all the driving, I cannot even get into Ingham on my own any more.
I have another cold which is bugging me but refused more antibiotics.
May 31 - We are off to Townesville to the hospital today, prepared to overnight if I am not so good after the new chemo.
June 1 - begin drip chemo down in Townesville. I was rather aprprehensive about this being unsure of the procdure or how it would affect me immediately. All
went fine and I was well enough to come home later in the aftenoon.
June 3 - Another learning curve this week. We have discovered that I am ok the day of the chemo but take the next 2 days to get over it. I am good this morning
after the 2 bad days.
An antibiotic has been added to the cocktail since yesterday to clear up the excess mucus and heavy cough.
June 5, more friends from Melbourne arrived Friday morning .
Poor Joseph has had some laughs watching me go about the chores flying in outer space, a legal junkie. I became completely hyperactive at the neight of the heavy duty dosage.
the whole area is full of people with a rather nasty type of flu or this hacking couogh which just goes on and on. Hard to keep away from it as it is like someone has sprayed the shire with bugs.
June 13 - "the troublefree visitors" arrived in Cairns over 2 hours late so stayed up there last night, coming down this morning.
June 15 - After too much excitement across the last 10 days I fell into total slow motion, spent the afternoon dozing on and off, not sleeping at all well day or night.
June 16 - I am keeping well, the cough continuing to improve, I am sure I would gain strength if I could sleep some more.
Food at last staying down, now up to 50.5kg.
The hacking cough and whatever that has been around since April is also clearing up this week. We have had this funny virus, when you get it, it hangs around for weeks, think you are over it then whammy there it is again. Not many have missed this little beauty and there is nothing to be taken for it.
I started referring to this as 'the Ingham flu'.
June 20 - Brekkie time, I'm hungry. So good to want to eat again.
I am keeping all sorts of food down now which is great and I feel much better for it. Have also cut back a tad on some of the damn drugs, they are all there if I need them however I like to manage with slightly lower doses when I can.
June 21, Tuesday morning bright and early down to Townesville. Chemo day, was a
later appointment than usual so we did a couple of messages and had coffee and sandwiches along the way. Was a long session, 5 hours, and we didn't get away from the hospital until after 5. Stopped at Rollingstone on the way up and had some dinner, then on we came, didn't get home until 8:30 or so and were really knackered.
June 25 - Been a big week. Joseph and I were somewhat horrified upon arriving in Townesville on Tuesday to have the Oncologist tell us he didn't know what to do with me, that he didn't feel we were heading anywhere and to give up. I pointed out that the chemo was already booked, I wasn't a quitter and was going ahead with the 2nd and 3rd treatments.
What was the CEA this time? Well duh, that test not done ... [why?!] I was more than horrified. Watching onco who wouldn't look us in the face, but with shifty eyes darting around the room, to the clock ... and the subtext like 'I don't want another failure on my watch, go home and die.'
Back home, M told QuackO about the experience. He wanted to make arrangements for further chemo done at Ingham hospital (which is a satellite of Townsville General) and has a qualified oncologist resident. It never happened. Onco said the treatment was 'critical' and had to be monitored by him. I got the impression, couldn't testify he said 'experimental' but it felt like that.
M commented at this time: ultimately a change of Oncologist is the bottom line.
And daughters came to visit again.
June 28 - We did not bellieve what we were hearing from the Onco either. Now I gotta fight for patient's rights I want another set of 3 chemo before we decide what to do, this is basically cos it has all taken so long to get into the routine and get to the point where it is not affecting me all day every day. As I said, no noticeable effects this time to get in the way, not enough to even annoy.
July 2 - Off to Townesville to take (daughters) to the airport ... after the full on week I am extremely tired, and it is time for a rest between visitors. I have such positive feelings just from being with them and actually being family, not something I am very used to having been somewhat disconnected most of my life family wise.
Continuing to downgrade slowly the number of pills going down the throat at any one time. Actually did this myself and now have the approval of the local Dr at least. The pain continues manageable so am glad to be getting the morphine out of my system. Sure is strong, nasty stuff that.
July 4 - Acoupole of teeth distegrated on me leacing a metal srew bare in my mouth, this lacerated my toungue which swelled up and I could hardly swallow all weekend dowm in Townsville.
No sleep all night, emergency early this morning, then organise private dentist cos none available til tomorrow. Teeth fixed, mouth still sore and lacerated, it should heal now.
Keeping well, side effects not even noticeable, cut back hard on medication, did it slowly but steadily by myself, not the chemo tablets tho of course.
Only one anti nausea tablet per day, morphine down from 110mg per day to 40 mg per day, pain manageable and only on odd occassions, heavens knows where it came from or where it went, as you know nothing showed in any of rhe
teats, baffled all comers and caused chaos and confusion with treatment interruption. Now had 2 injection treatments, have 3rd on 12th as I said, going to request another course and try to have it up here.
Last results not encouraging, cancer reading climbing again, next results 12th July. Keep smiling ya nutter I say.
Actually, it may not have been climbing, as the one CEA in the middle had not been taken. I reckoned a graph with a hole in the middle was not too useful. On the other hand, maybe we were just not told what the reading was.
July 13 - Went to Oncology yesterday, cancer reading gone from 60 to 30. Wowie, we grinned like a pair of idiots, even (Onco) smiling
July 19 - I have no side effects from the chemo but have had an unpleasant day with saliva reaction. Just doesn't stop flowing.
July 22 - Made it into Ingham Medical yesterday and waited hours, I have a throat infection, unpleasant but with the medication he gave me he reckons a couple
of days I will feel better, a vast improvement on being confined to a chair spluttering and full of mucus.
July 28 - This damn infection doesn't seem to want to let go so Brett has laden me with antibiotics, a spray and some dexmethsone for 7 days to clear it totally. More bloody pills.
typical of having cancer I pick up every bug going around - and then some - have had a throat infection with the flu for about 10 days
July 29 - I am getting more and more vague at the moment, this concerns me very much, the Dr tells me it is the cancer causing this and is quite normal
One email redacted ... from the bitch daughter, complaining about the billing error on the last trip up, which M had paid for. I think the motel tried a double billing. Just the sort of stress a dying woman does not need. Nor did I.
End of July, M was thrilled that a project she'd planned was finally to begin. The builder would be starting the bedroom extension on the weekend. This was to expand the area, make it easier for home care.
We were scheduled for another onco trip on August 2, but heavy rain and wind never let up. Highway was closed somewhere along the way.
Ah yes, our national highway, Number One. Most of the 107k length from Ingham to Townsville is one lane each way! About three places where passing lanes exist, but usually hopeless due to plodding FNQ drivers or trucks.
Aug 3 - Bad night again, into Dr this am, gotta have shot in the bum every day for 5 days. Got stuff to dry up the mucus, sleeping tablets etc.
The shot was Yet Another Antibiotic. Do these fools ever know when to stop? Apparently not. During the night, attacks of diarrhea and more vomiting. By the next morning when I took M to the medical centre again, she was so dehydrated they just called Ingham hospital and said get ready. There, the estimate was a week or more to get her back to 'normal'. But:
Aug 7 [sun] Got out of hospital yesterday. Flu became chest infection, got admitted as emergency when saw Dr.
48 hours on drip has improved things no end. Weak, heaps of antibiotics and saline pills for 5 days and mainly bed rest.
Absolutely nothing but praise for the nurses and staff at Ingham Hospital, run off their feet, understaffed, no aides or assistants, chaotic.
Hadn't actually planned on being admitted as an emergency patient when on a check up with the local Dr but there you go.
Amazingly enough through this I have actually felt well within myself, kept my appetite right thru, and the CEA reading actually went from 30 to 21.
Marion had rallied so quickly, the nurses were amazed. And with the CEA now showing a consistent improvement, we were feeling positive. Also, along this span of time, both Onco and QuackO had physically examined M, due to the chest infection and grudgingly concluded, "At least your lungs are clear, OK."
It must really grot them when a smoker doesn't reflect the ~conventional wisdom~. However ...
We travelled to the regular onco appointment the following Tuesday. M was in good spirits, we had brunch at Rollingstone. Arrived at Townsville Hospital, in onco waiting room. Saw onco at a distance, looking fishy-eyed. By and bye, he takes M to an adjacent cubicle for a quick examination, concludes "Your lungs are wrecked!"
What?
"We're admitting you into hospital." Hmmm. So I saw her admitted, then started in on the shopping list, returned after lunch. Two other specialists have been around, not saying much. More hmmm. I go find a motel, return in evening.
Wednesday are x-rays, tests, other doctors, no sign of onco. I'm in and out several times. What's going on? We don't know. Then, late arvo, I'm back again and we have a discussion with a woman doctor about 'tomorrow's tests' ... so M has to fast that night, OK.
The following morning, I'm there before the scheduled tests, whatever they are ... but no one has turned up yet. M chases me off, why waste time here. OK.
When I return, it's "the day the world changed" for us. And I told family and friends via email:
Aug 14 [J group msg on M machine]
As of Thursday at Townsville Hospital, the oncologist reckoned Marion has 10 days ... they're not sure what this flu/chest infection/emphysema/pneumonia/guess-whatever IS but she doesn't respond to antibiotics and nothing can be done so ... "would you rather die in Townsville or Ingham hospital?!'
At the moment she is in Ingham hp. but I am anxious to get her HOME! nothing different in the past few days that I have not already dealt with on my on here.
Will only check this machine sporadically, but more news when it happens ...
And this is what it was like, that Thursday ...
I walked into the ward, M's bed was empty. None of the other three patients had anything to say. I went out. No one at the nurse's station. I wandered down hallways looking for someone, then back to the ward.
Heard a noise, turned. A nurse is bringing M back, in a wheelchair. She's been crying. I have a sinking feeling. Nurse leaves, M tells me of her day. From the time I'd left, maybe 10 a.m., NO ONE came to see her. No tests. No food. Nothing to drink.
Although it was known I'd be back around four p.m., I was not there when onco turns up with his speech, paraphrasing what he told M who told me: "Three of us discussed your case. We don't know what's wrong with you. You're not responsding to antibiotics. There's nothing we can do, so ... would you rather die in Townsville or Ingham?" He then starts to walk off, turns and says, "You've got ten days."
I'm not making this up!
Half the corridors in Townsville hospital have signs about the Zero Tolerance Policy. Yeah. They won't put up with rage or violence from patients or family. Right. The other half of the signs plead for tolerance from the hapless victims because the staff is so overworked. Yeah.
I would have failed the tolerance tests had I been there for the onco. And surely in the slammer now. Never saw the bastard again.
M told me to 'go home' but I said, maybe I could get you something, to eat or drink?
"How about a good Scotch whiskey?" Done. Miniatures are handy.
They sent M back to Ingham hospital "so certain things could be arranged." That turned out to be, the delivery of an oxygen bottle as backup and a compressor machine, both of which had to come from Townsville. So for eight months, M has not needed oxy supplement but now, it's mandatory? Uh huh. So why does she have to stay in the hospital. Because they have oxygen if she needs it. Uh huh. I'm damn sure I could have organised a portable unit myself in no time at all. But oh no, that's not all. We have to send someone out to inspect the premises, for safety and home care and and and ... who's in charge? Oh, this command comes from Townsville admin. Yeah, so who do I kill? No answer.
M's there for eight days. As far as I am concerned, they were days stolen from us by some faceless bureaucrat. Even though I visited several times a day.
I even took her dawg, Inu the spoodle, to visit one evening. Tied his lead to the rail outside, brought her out in a wheelchair.
Meanwhile, the builder has begun the extension. This being FNQ [of which I will diary extensively, in future] what I didn't know is, not only did I have to supply the paint, but I was expected to prime and first finish coat the timber. Oh well. As if I didn't have enough to do. And of course, her daughters and her brother – and a cousin or two had returned ...
Aug 20 - Home with my beloved Joseph, familiar surrounding, just feeels so good, tired but manging. Frank done well with extension, bring in gang Monday, finished by mid week.
Seeing as how the chemo 'injection' has a known side effect of causing shortness of breath, and morphine has somewhat of a respiratory suppression effect, it's no wonder she has breathing attacks not dissimilar to asthma. This is why 'she needs oxygen at home', thus the delay in getting her out of hp. However, she's taught herself to control her breathing and has yet to use any of this necessary item ...
Aug 24
M : was pretty good Monday morning ... then the ~Blue Nurse~ showed up to [a] teach me how to put on a morphine patch ... only I was just into 10 minutes of the 3rd day of painting timber weatherboards, well duh! So [b] I will do it and show you.
Well, within an hour, M was poorly. Coincidence? I think not. What with the building going on, I wasn't surprised when she started complaining later about the 'red dust' on the walls and ceiling. Hmmm, I could not see it ... and by evening it was, 'now it's black, why?' And later, it's not dust, it's BUGS.
The ~fact sheet~ from the pharmaceutical co. does kinda mention [after saying, you will probably experience none of these side effects] blah blah and oh yeah, hallucinations and blah.
When the kids were here at some point, she complained to them about the bugs. And yesterday about 'now there's dust on my pink chair'. I stopped and said, 'Marion, I hate to tell you this -- but there are no bugs, no dust. It's the morphine.' Once I explained that, she accepted it, matter-of-fact, no problem.
I talked to ------ about the situation, seeing as how she's an ex-druggie, and later she had a conversation/argument with the local quack about it all. He then called me and was at first inclined to be picky about my 'diagnosis' but soon agreed that bugs-on-the-wall was a classic narcotic reaction and maybe stop the morphine patches would be A Good Idea.
This morning, I woke about 5 when M sat up, groaning and saying 'cant take more'. I asked if she wanted some Panadeine Forte, but NO. So, her choice, I dozed off again, woke about an hour later, she's still sitting on side of bed and moaning or talking to herself. Muttering.
I made coffee and she did drink some. Brought the Panadeine, on my own. 'Take the pills!' She put em down on bed, looked at them bewildered-looking. She's spaced out still, can't even keep up with one sentence at a time.
So I am reckoning this might be the day ... and trying to come to terms with it. And the phone rings, Yvonne, our neighbor, who is currently in the U.S. wondering how M is, as she's not had an email in some time. Then, no sooner I finish that, phone rings soon as I put it down and is Maggie, M's sister, ringing from London. And while I am filling her in, the damn ~Blue Nurse~ turns up and barges in like she owns the fucking place. Now, before the phone, I had taken M to the toilet , in the wheelchair, then parked her afterward by the front door to look out on the forest vista, then back to the bedroom.
After a bit she got herself from chair to bed and five minutes later was in as deep a sleep as I've seen in a while. Good. Leave her be.
But oh no, mursebitch rushes out, this woman's oxygen ratio/blah/whatever/rabbit rabbit/bullshit ... turns on the oxygen generator that SHE had said when it was installed, has to be by the door ... drags it across the room, picks up the tubing, dashes in a hoists M up to get the breathing tubes up her nose 'to make her more comfortable'. Then comes out and complains M is not eating enough blah.
I allowed as how it seemed M was deliberately starving herself, how she had said to the daughters only last night, why can't a person just go to sleep and die. "It doesn't work like that," was the huffy response. Well stick the expert ~knowledge~up your ass, stupid bitch ... I just walked away, called Melissa and said, come over right away, I need help.
My intention was just to get out of the house before I punched the woman out. Literally. Mel was quick but by that time, officious nurse woman had prolly picked up on the negative vibes and decided to beat a retreat. Just as well.
Really, M would have been better off without the oxygen and if she slipped away in her sleep, better for her and everyone else!
But oh no, now she's more comfortable. Thanks a lot, asshole.
And another Thought for the Day:
Did ya ever notice when shit happens, it's always "God's will"?
Aug 29 [Mon] 10:56 am my group email message
I brought her home and we had a few good days, all things considered, then the decline set in.
As of yesterday, the weakness and failing body made it inadvisable to keep her here, essentially unmanageable as a home care patient. So I managed to get her assent to the back to hospital notion. Once she said Yes, another ambulance. A retired RN, Joan, who lives up the road and had been helping me with M, went in the ambo. I followed soon thereafter, not before getting a call from the ambo driver: could you bring our wheelchair? we left it in the front yard ...
ah, FNQ ...
I stayed a couple of hours and came home to tend to Inu and chores, and go back sometime today as a live-in guest, so to speak, until the end.
This is the first time I've had an occasion to fire up her machine and check email. I guess the next contact will be after it is all over.
Aug 31 [J final group msg]
Marion passed away in her sleep on Monday night about 9:15 ...
She'd been back home -- where she wanted to be -- for 10 days. Then on Sunday afternoon, with her assent, I called an ambulance and she went back to Ingham hospital.
Here's to the bravest person I've ever known -- she fought it right to the end. She will be missed. By me, and all those whose lives she touched in her life.
Thank you to all who helped her on the way with your emails.
J
Sept 2
We farewelled Marion this afternoon -- her choice was cremation, NO formal funeral or memorial, and ashes to be scattered into the waters.
Thus ends Marion's story. But not mine – I will have some thoughts on the ordeal to share before long. Like the autopsy ...