[zero energy to proof this. maybe tomorrow.]
Cancer Update: Notes from deep in Purgatory - when your work has no support, it is worse; meds barely working, pain all over; hour hike for meds, glasses lost; what now?....
It's been a Hell of a day - meds haven't touched my pain all day, extremely painful to eat, with near zero support (no Family) horrendous logistical Hell - like walking 6 blocks to get meds (felt like 16 miles, almost couldn't make it).
This is the first instant I've had the strength to get online for even a few moments.
God save us from the healers - LOL. :-( :-( They have to pretty much kill you, to save you. NO COMPLAINT.
I think I've heard that weekends are the most dangerous time to be sick - staff taking weekend off. This sure is my experience.
I had an old, 'hospital floater' (no one wants her I suspect), know it all discharge nurse / nurse in charge this morning. Her process is to deflect every problem as something that can't be solved, saying so with ridiculously transparent, fake, authority. I didn't have the energy or time to fight it, much. I did get the pain med strength doubled, requiring a new script, which of course miss zero compassion did not have faxed ahead - so the hospital driver, kept waiting an add'll hour and a half, was unwilling to wait the 20 min at the pharmacy for me to get it filled, so that was a subsequent 60 minute hike from Hell.
Oh well. Very oddly, one day is horrible, and the next seems to be better, repeat. We'll see.
Back at CCNV Infirmary clinic - staff happy to see me - nice guys mostly.
That my work, and therefore I, have near zero Family support is a huge validation of my work. In a near totally cancer ridden body of humanity, I Stand as 100% indictment to virtually all of the cancerous practices - this will gain you support from the cancer, how? ZERO regrets, recriminations.... It is what it is. It will be what it will be.
10.26.2013
Cancer Update: Very discouraged - pain meds had no effect this morning - much pain.
Cancer Update: Very discouraged - pain meds had no effect this morning - much pain.
10.25.2013
Cancer Update: MAJOR UPDATE
* Discharge tomorrow morning at 10am if current plans hold - returning to CCNV Homeless Shelter Infirmary.
From the standpoint of the surgeons the process has been a 100% success - all of the tumors were removed; good margins of healthy tissue remained separating the tumors from the liver that remained; the intervention to starve the most cancerous half of the liver of blood, to shrink it and force the healthier half to grow was a total success with the healthier half growing a good 30% or more; quality of the remaining liver appeared very very good.
* Pathology report is not back leaving the one big unknown, but looks like they may well have given me a shot at another 15 years or so to serve.
* Had great success with solid foods this morning as near as can be told. Eggs, french toast, grits, ginger ale... all went down fine if I kept the spoon size small and the pace slow. Anything at all acidic - NOPE. Peaches, OJ, nope. Now we'll see how lunch goes.
* It will be a good 8 weeks for me to recover, physically, from such a major operation. Will the infirmary take me that long? I NEED to be back in front of the Canadian Embassy, but I don't think I could physically survive it in my current state. Oh well. We'll see what the Creator has in store.
* With really powerful pain meds I feel quite well. Without, a lot of pain at my surgery site, throat, and back. My understanding is I'll be leaving with a good supply of pain meds, and written scripts for more as needed.
* I don't think anyone, anywhere, could have gotten better care than has this homeless bum.
* I see huge holes in our med system that I'll be writing up this afternoon and leaving with the team.
* Had I been a more knowledgeable patient I quite possibly could have gotten myself out of hospital three or even four days earlier. More on this in the writeup mentioned above.
* Typing proficiency is a huge indicator of mental state. Today I'm at 90% speed, accuracy. Just 2 days ago at a glacial, agonizing, near worthless 20%.
From the standpoint of the surgeons the process has been a 100% success - all of the tumors were removed; good margins of healthy tissue remained separating the tumors from the liver that remained; the intervention to starve the most cancerous half of the liver of blood, to shrink it and force the healthier half to grow was a total success with the healthier half growing a good 30% or more; quality of the remaining liver appeared very very good.
* Pathology report is not back leaving the one big unknown, but looks like they may well have given me a shot at another 15 years or so to serve.
* Had great success with solid foods this morning as near as can be told. Eggs, french toast, grits, ginger ale... all went down fine if I kept the spoon size small and the pace slow. Anything at all acidic - NOPE. Peaches, OJ, nope. Now we'll see how lunch goes.
* It will be a good 8 weeks for me to recover, physically, from such a major operation. Will the infirmary take me that long? I NEED to be back in front of the Canadian Embassy, but I don't think I could physically survive it in my current state. Oh well. We'll see what the Creator has in store.
* With really powerful pain meds I feel quite well. Without, a lot of pain at my surgery site, throat, and back. My understanding is I'll be leaving with a good supply of pain meds, and written scripts for more as needed.
* I don't think anyone, anywhere, could have gotten better care than has this homeless bum.
* I see huge holes in our med system that I'll be writing up this afternoon and leaving with the team.
* Had I been a more knowledgeable patient I quite possibly could have gotten myself out of hospital three or even four days earlier. More on this in the writeup mentioned above.
* Typing proficiency is a huge indicator of mental state. Today I'm at 90% speed, accuracy. Just 2 days ago at a glacial, agonizing, near worthless 20%.
Cancer Update: Check out scheduled for tomorrow morning, barring the unforeseen.
Cancer Update: Check out scheduled for tomorrow morning, barring the unforeseen.
From a note to key caregivers at my primary care, Unity Health Care (Steph), the Liver team at GUH, the GUH social worker:
":-) LOL. I feel 1000 times worse than before the operation. To be
expected, I think, but I didn't see it coming.
Much pain in the throat from NG Tubes, twice. Back pain? Stomach
pain.
I find that learning to be an effective patient takes a lot of learning, so
much better at it I could have been - knowing that too much pain meds
early on slows down recovery a lot, giving not one pain level readout
but one for each site, being very very very careful about re-introducing
food - not going to fast - not too much intake - not big bites....
Of course I feel hugely appreciative and well-served by the care I've
gotten from you all. I hope to have an additional 15 years to do my pitiful
little part of making the world less of the cesspool we've made of it.
The docs say tomorrow morning is when I should checkout:
1. Ms. Steph, will CCNV re-admit me even tho my 2 week ticket has
expired?
2. Ms. Joanne, can transportation be arranged?
3. Ms. Joanne, pls advise Reggie, if he can drive, that I have no winter
jacket (police threw out all my stuff last year as part of their clean the
bums off the street tactics). So, if he can layer so the car can be kept
warm?
Thanks for all you do.
James M."
From a note to key caregivers at my primary care, Unity Health Care (Steph), the Liver team at GUH, the GUH social worker:
":-) LOL. I feel 1000 times worse than before the operation. To be
expected, I think, but I didn't see it coming.
Much pain in the throat from NG Tubes, twice. Back pain? Stomach
pain.
I find that learning to be an effective patient takes a lot of learning, so
much better at it I could have been - knowing that too much pain meds
early on slows down recovery a lot, giving not one pain level readout
but one for each site, being very very very careful about re-introducing
food - not going to fast - not too much intake - not big bites....
Of course I feel hugely appreciative and well-served by the care I've
gotten from you all. I hope to have an additional 15 years to do my pitiful
little part of making the world less of the cesspool we've made of it.
The docs say tomorrow morning is when I should checkout:
1. Ms. Steph, will CCNV re-admit me even tho my 2 week ticket has
expired?
2. Ms. Joanne, can transportation be arranged?
3. Ms. Joanne, pls advise Reggie, if he can drive, that I have no winter
jacket (police threw out all my stuff last year as part of their clean the
bums off the street tactics). So, if he can layer so the car can be kept
warm?
Thanks for all you do.
James M."
10.24.2013
Cancer Update: Big setback. My body is physically rejecting solid food. More tomorrow am.
Cancer Update: Big setback. My body is physically rejecting solid food. More tomorrow am.
Children of the Creator Love Everything the Creator has Created. Those who do not, are not.
Children of the Creator Love Everything the Creator has Created. Those who do not, are not.
Well, friends, I am starting to get back on FB and email. Please have extremely low expectations.
Well, friends, I am starting to get back on FB and email. Please have extremely low expectations.
It does not matter what happens to me. All that matters is that there be infinitely more Loving in the world.
It does not matter what happens to me. All that matters is that there be infinitely more Loving in the world.
Norms, standards, 'ways'... are all useful and necessary except when they become the lie that 'we know what is best now,' as opposed to the Truth which is, 'We are not quite so blind with these, as we were without them,' unless, and until, as seems near inevitable, we enshrine them as 'Truths,' and use them as a barricade against change.
Norms, standards, 'ways'... are all useful and necessary except when they become the lie that 'we know what is best now,' as opposed to the Truth which is, 'We are not quite so blind with these, as we were without them,' unless, and until, as seems near inevitable, we enshrine them as 'Truths,' and use them as a barricade against change.
Loving - That which will not, cannot rest, until it is Loving, Caring of, everything in creation. All else is Lusting.
Loving - That which will not, cannot rest, until it is Loving, Caring of, everything in creation. All else is Lusting.
Cancer Update: Hello from Purgatory!!! Sure beats Hell.
I'm sitting here with all tubes removed from my nose, and 24 hr IV, 24 hr pain meds...!
I'm getting electrolytes now IV, posassium, magnesium... for as long as they are low.
Slept 14 hours last night. Disturbed a few times for vitals, needed 2 hr pain meds only once. Well, I needed to ASK for them only once. I'VE LEARNED THAT PAIN MEDS WHEN HEALING ARE TO AVOID TOO MUCH, IMMOBILIZING PAIN. BEYOND THAT, YOU ARE SLOWING YOUR HEALING.
About every 2 hours I'd wake up, have pain at the liver, turn over, wait for 15 min for the pain to subside... be asleep, repeat....
I'll be out of the hospital tomorrow or Fri I'm sure.
Bowel is showing obvious but slow success in coming back online.
I'm on a liquid diet since last night. Liquid this afternoon. Solids tonight if I can handle it.
I've typed this post in twice the time it would have taken before the operation, and twice as fast as would have taken yesterday.
I'll see little online correspendence, reading, etc for yet a few days more.
I'm getting electrolytes now IV, posassium, magnesium... for as long as they are low.
Slept 14 hours last night. Disturbed a few times for vitals, needed 2 hr pain meds only once. Well, I needed to ASK for them only once. I'VE LEARNED THAT PAIN MEDS WHEN HEALING ARE TO AVOID TOO MUCH, IMMOBILIZING PAIN. BEYOND THAT, YOU ARE SLOWING YOUR HEALING.
About every 2 hours I'd wake up, have pain at the liver, turn over, wait for 15 min for the pain to subside... be asleep, repeat....
I'll be out of the hospital tomorrow or Fri I'm sure.
Bowel is showing obvious but slow success in coming back online.
I'm on a liquid diet since last night. Liquid this afternoon. Solids tonight if I can handle it.
I've typed this post in twice the time it would have taken before the operation, and twice as fast as would have taken yesterday.
I'll see little online correspendence, reading, etc for yet a few days more.
10.23.2013
****** "EVIL, IF IT WERE NOT DIFFICULT TO SEE EVIL, THERE WOULD BE NO EVIL. BECAUSE IT IS NEAR IMPOSSIBLE TO SEE, BECAUSE IT MAKES ITSELF SO NEAR-IMPOSSIBLE TO SEE, IS.... THE REASON THERE IS EVIL IN THE WORLD, HOUSE, FLOOR, ROOM... 'CONSPIRACY THEORY MAY BE THE MOST DIFFICULT." PROFOUND LIFE REVELATION.
****** "EVIL, IF IT WERE NOT DIFFICULT TO SEE EVIL, THERE WOULD BE NO EVIL.
BECAUSE IT IS NEAR IMPOSSIBLE TO SEE,
BECAUSE IT MAKES ITSELF SO NEAR-IMPOSSIBLE
TO SEE, IS....
THE REASON THERE IS EVIL IN THE
WORLD, HOUSE, FLOOR, ROOM...
'CONSPIRACY THEORY MAY BE THE MOST DIFFICULT."
PROFOUND LIFE REVELATION.
BECAUSE IT IS NEAR IMPOSSIBLE TO SEE,
BECAUSE IT MAKES ITSELF SO NEAR-IMPOSSIBLE
TO SEE, IS....
THE REASON THERE IS EVIL IN THE
WORLD, HOUSE, FLOOR, ROOM...
'CONSPIRACY THEORY MAY BE THE MOST DIFFICULT."
PROFOUND LIFE REVELATION.
***** Cancer Update: HOORAAAYYYY! OUT OF THE HIGHEST REACHES OF HELL!!!!! [[[Yes, my last week has been HEAVEN compared to SYRIAN, PALESTINE, TITANIC II (earth post 2035), Earth 2013 for 40 Billion....]]]...
Cancer Update: HOORAAAYYYY! OUT OF THE HIGHEST REACHES OF HELL!!!!! [[[Yes, my last week has been HEAVEN compared to SYRIAN, PALESTINE, TITANIC II (earth post 2035), Earth 2013 for 40 Billion....]]]...
Transiting into purgatory!!!!!
STOMACH PUMP TUBE REMOVED!!!! (MORE ON THIS POST MOMENTARILY)
Transiting into purgatory!!!!!
STOMACH PUMP TUBE REMOVED!!!! (MORE ON THIS POST MOMENTARILY)
Cancer Update: !! Updated !!! Apartheid HC? Cancer Centers, tho I'd guess it is among the country's top, I'd guess, just dawned on me, it is the MEDICAIDE wing, the poor folks wing of that Elite Liver Center. Just a guess.
Cancer Update: Apartheid HC? Cancer Centers, tho I'd guess it is among the country's top, I'd guess, just dawned on me, it is the MEDICAIDE wing, the poor folks wing of that Elite Liver Center. Just a guess.
!! Update !!
There are three profoundly find people I know of here, maybe 6, on staff, or who come to this floor. On who is the most senior, educated, kind, knowledgeable... has just spent 20 min with me.
I shared with him my extensive dreams of Apartheid HC in America, and most immediately, at GUH. "No," it is not the case, not at GUH. I have ever reason to believe him, and I do.
In which case, the level of difference in care that the same client can receive from one professional to another in the same room, same floor, is beyond belief, of the same floor, different patients, beyond belief.
Be forewarned.
!! Update !!
There are three profoundly find people I know of here, maybe 6, on staff, or who come to this floor. On who is the most senior, educated, kind, knowledgeable... has just spent 20 min with me.
I shared with him my extensive dreams of Apartheid HC in America, and most immediately, at GUH. "No," it is not the case, not at GUH. I have ever reason to believe him, and I do.
In which case, the level of difference in care that the same client can receive from one professional to another in the same room, same floor, is beyond belief, of the same floor, different patients, beyond belief.
Be forewarned.
Cancer Update: !! Updated !! Upper Levels of Hell, Movimg toward Purgatory toninght?...
1. I'm told and believe, that I was misinformed, and that the path report will not be back till tomorrow or Fri from a Fri operation. Hence no update from key surgeon. Tomorrow or Fri expected now.
2. Key issue, as obvious to the docs for several days now, is bowel shut down. They see progress today. To prompt, and verify progress, they put me on manual drip, gravity, and disconnected suction, this morning about 9am. 12am they checked on and liked the progress - little drainage, mostly a little urine. Detach IV tomorrow morning? Irrigation.
Note, my typing is down to a 20% effectiveness. :-( WTF??? No emails. No FB. Little to no reading or output expected from me today.
3. PAIN - TODAY 12:30:
1st biggest pain today, nose, 8. 4 right now, 4.5 hrs from last med.
2nd biggest pain right now today, back,, but 4.5 aftr last medsm 8 right now.
NOTE: I can't even make any sense AT ALL of the news. Tho I don't think that is entirely me. Really. Tho I don't think it is entirely me. Really.
2. Key issue, as obvious to the docs for several days now, is bowel shut down. They see progress today. To prompt, and verify progress, they put me on manual drip, gravity, and disconnected suction, this morning about 9am. 12am they checked on and liked the progress - little drainage, mostly a little urine. Detach IV tomorrow morning? Irrigation.
Note, my typing is down to a 20% effectiveness. :-( WTF??? No emails. No FB. Little to no reading or output expected from me today.
3. PAIN - TODAY 12:30:
1st biggest pain today, nose, 8. 4 right now, 4.5 hrs from last med.
2nd biggest pain right now today, back,, but 4.5 aftr last medsm 8 right now.
NOTE: I can't even make any sense AT ALL of the news. Tho I don't think that is entirely me. Really. Tho I don't think it is entirely me. Really.
10.22.2013
Cancer Update: I actually don't know what is going on with the big picture. I've never seen the primary surgeon since Friday and the others tell me only he knows if the op was a success or whether he just found a whole bunch of cancer. Loving u
I actually don't know what is going on with the big picture.
I've never seen the primary surgeon since Friday and the
others tell me only he knows if the op was a success or
whether he just found a whole bunch of cancer.
Cancer Update !! revised !!: Spent the Day in Hell yesterday; Huge step Backward; Restarting
By 3 days ago my pain was under control, indicating I
should come off of my IV, into liquids, then solids, to beginn
the major and crucial task - to restart my bowels. All my vitals
were great.I had NOT passed gas,very a bad sign.
We went to liquids, quickly and then to solids, tho I was very conservative,
not wanting to move too fast. Well, by Sunday night things were
going badly. Pain meds too had been switched from liquid iv to solid.
Pain was headed toward 7-8 in my back and 7-8 in my stomach.
Monday they sent me in the am to a tummy x-ray, and afternoon did a chest
x-ray in my room.
by 6pm yesterday, Monday, I had thrown up 3 times. Pretty hellish. My
pain back and front was an 8-9 most of the day. Often I had spasms like
attempts to burp but they only seemed to pack in more air. My stomach
was explodig
So, about 6pm we took the huge, but necessary step back of putting
the nose tube back in - no sedation - yes, not fun. "OH, MR MCGINLY,
I'VE NEVER SEEN ANYONE TAKE IT SO WELL," said the nice and
competent nurse, every time, I suspect, to a patient that didn't pass out, or
go to the psych ward over this.
Within 2 hours 2 buckets had been suctioned out of my stomach - all
bile kinds of stuff.
I don't think they know what the hell is going on. NO, I don't fault them.
They just can't tell yet. These are major, tricky operations, and restrting
the bowel is still black magic.
I could manage zero communication except with the med team.
The one incoming phone call, the phone had fallen on the floor and
I was in no position to retrieve it. ZERO ability to read or resend
emails - never had the computer in my hands -world record
My ability to type is 60% impaired - error rate that high, speed rate
diminished that much.
Even in this way above average hospital - oh how I feel for patients that
can't advocate for themselves. Huge, skilled, self advocacy is needed on
every level - understaffing, undervaluing of total patient care, undervaluing
of crucial need for inter and intra dept communication. Nightmare, for the
better staff memebers at all levels, I'd guess. One, otherwise nice floating
doctor that was sent to check on me late yesterday, day Hell, 'Now, why
do you want to check in [with your highly competent nurse. trained in all
this] for the information you are asking me]??????' WTF???????
Much I'd like to write, report, but my typing is so smashed, and my memory
so smashed, I don't know what will be possible when.
should come off of my IV, into liquids, then solids, to beginn
the major and crucial task - to restart my bowels. All my vitals
were great.I had NOT passed gas,very a bad sign.
We went to liquids, quickly and then to solids, tho I was very conservative,
not wanting to move too fast. Well, by Sunday night things were
going badly. Pain meds too had been switched from liquid iv to solid.
Pain was headed toward 7-8 in my back and 7-8 in my stomach.
Monday they sent me in the am to a tummy x-ray, and afternoon did a chest
x-ray in my room.
by 6pm yesterday, Monday, I had thrown up 3 times. Pretty hellish. My
pain back and front was an 8-9 most of the day. Often I had spasms like
attempts to burp but they only seemed to pack in more air. My stomach
was explodig
So, about 6pm we took the huge, but necessary step back of putting
the nose tube back in - no sedation - yes, not fun. "OH, MR MCGINLY,
I'VE NEVER SEEN ANYONE TAKE IT SO WELL," said the nice and
competent nurse, every time, I suspect, to a patient that didn't pass out, or
go to the psych ward over this.
Within 2 hours 2 buckets had been suctioned out of my stomach - all
bile kinds of stuff.
I don't think they know what the hell is going on. NO, I don't fault them.
They just can't tell yet. These are major, tricky operations, and restrting
the bowel is still black magic.
I could manage zero communication except with the med team.
The one incoming phone call, the phone had fallen on the floor and
I was in no position to retrieve it. ZERO ability to read or resend
emails - never had the computer in my hands -world record
My ability to type is 60% impaired - error rate that high, speed rate
diminished that much.
Even in this way above average hospital - oh how I feel for patients that
can't advocate for themselves. Huge, skilled, self advocacy is needed on
every level - understaffing, undervaluing of total patient care, undervaluing
of crucial need for inter and intra dept communication. Nightmare, for the
better staff memebers at all levels, I'd guess. One, otherwise nice floating
doctor that was sent to check on me late yesterday, day Hell, 'Now, why
do you want to check in [with your highly competent nurse. trained in all
this] for the information you are asking me]??????' WTF???????
Much I'd like to write, report, but my typing is so smashed, and my memory
so smashed, I don't know what will be possible when.
10.20.2013
Cancer Update: Oh, so this is what a Pain Day is like? OH F'CKING OUCH
By midnight Saturday night - 'Nurse, these meds don't seem to be
helping much any more?' I've been on a pain pump, with a pain pump
I could push every 5 minutes, but averaged once per hour or less. All of
a sudden I was up to every half hour of very 15 min, and pain wasn't going
away.
So they updated the dosage, same machine. They don't like to do that machine,
drug ,to many days in a row, so they took it off at 3pm, as I recall, having
just awakened to the highest pail I'd had since the 10 level in the OR. They
then gave me, oh, I am soooooooo muddled, d..... something, then
something else, and then a shot of dilantin, maybe? By 5pm I was able to sleep,
and each time I awoke I as about a 3 - acceptable. But I was a a 7 - 9
much of the day - totally not fun.
Oh, I started on regular food this morning, and they gave me potassium and
that 'm' electrolyte. Oh god, total mental shutdown.
They seem to have an adequate plan lined up for tonight -
The original pain pump and pump.
An every 6 hour dose of d.......(?).
Eligible for the shot of dilantin every 2 hours as needed.
OUCH OUCH OUCH.
All vitals are excellent.
Outside bulb drain has to be emptied, a lot.
No external drainage - amazing.
helping much any more?' I've been on a pain pump, with a pain pump
I could push every 5 minutes, but averaged once per hour or less. All of
a sudden I was up to every half hour of very 15 min, and pain wasn't going
away.
So they updated the dosage, same machine. They don't like to do that machine,
drug ,to many days in a row, so they took it off at 3pm, as I recall, having
just awakened to the highest pail I'd had since the 10 level in the OR. They
then gave me, oh, I am soooooooo muddled, d..... something, then
something else, and then a shot of dilantin, maybe? By 5pm I was able to sleep,
and each time I awoke I as about a 3 - acceptable. But I was a a 7 - 9
much of the day - totally not fun.
Oh, I started on regular food this morning, and they gave me potassium and
that 'm' electrolyte. Oh god, total mental shutdown.
They seem to have an adequate plan lined up for tonight -
The original pain pump and pump.
An every 6 hour dose of d.......(?).
Eligible for the shot of dilantin every 2 hours as needed.
OUCH OUCH OUCH.
All vitals are excellent.
Outside bulb drain has to be emptied, a lot.
No external drainage - amazing.
Cancer Update: Lost in Space, Pain meds less effective
Exactly 71 hours ago they shot me into space, and I've never fully returned, as per plan.
About midnight they had to up my pain med dosage due to my becoming less sensitive, and the nurves coming more alive day 2.
My brain remains uber fuzzy, and hence typing is near impossible it is sooooo error prone.
Soooo, I've just had them put the meds back down - affording me a background level of 3-4 vs the 1-2 of up till now. "I've never had a patient ask for their meds to be reduced!
I've got get out of here and stop draining our kids of funds. It is a zero sum game now.
About midnight they had to up my pain med dosage due to my becoming less sensitive, and the nurves coming more alive day 2.
My brain remains uber fuzzy, and hence typing is near impossible it is sooooo error prone.
Soooo, I've just had them put the meds back down - affording me a background level of 3-4 vs the 1-2 of up till now. "I've never had a patient ask for their meds to be reduced!
I've got get out of here and stop draining our kids of funds. It is a zero sum game now.
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