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My husband recently diagnosed with pancreatic cancer

Re: My husband recently diagnosed with pancreatic cancer

Posted by Jackwb on Oct 22, 2020 2:24 pm

Laika57‍ , your experience brings back some horrible memories of my hospital stay. I was there to get my prostate removed and hernia repaired about 30 months ago, surgery scheduled for 8:50 AM but got bumped to 12:30 PM because my OR was needed for an emergency. I was OK with that, sat doped up for three hours then walked to the table. I was on the table for almost five hours, something happened in there or in the recovery room that no one will talk about. My wife was not permitted to see me, I was put on Fentanyl then Oxy and kept stoned for almost three days. My wife was told that I was having pain issues but she finally saw me at about 10:00 PM when they brought me up to the ward.

Being diabetic I was put on the "diabetic liquid diet" a cup of broth, two cups of jello, and a cup of tea three times a day, but got my 500 mg of metphormin and a stool softener with each meal. My sugar crashed, with the drugs it was like being drunk, very drunk, and the stool softeners caused incredible pain, I blew up on the third day, sprayed everything, even the ceiling. The changed my bedding and gown but not my compression socks. I was forced to lie in the filth for the rest of my stay.

On the fourth day I went to the nurses' station and asked why  the metphormin and stool softeners if I was on a liquid diet. They all laughed (3 of them) but checked my chart and said that something weird had happed and that I was supposed to get solid food. If they had checked my sugar they would have known sooner but they checked it only once when they caught me using my own tester. My surgery was on a Monday, the plan was to discharge me on Thursday...on Saturday I was told that I would stay until Monday, maybe longer. I refused and discharged myself, my wife drove me home and I was fine.

I still wish I knew hat happed in the OR, in the ward all of the nurses looked at me funny and kept their distance, sort of like I was a leper or one of the living dead.

But my cancer is slowly coming back and I'm not looking forward to Treatment 2.0. 

Re: My husband recently diagnosed with pancreatic cancer

Posted by Runner Girl on Oct 22, 2020 2:43 pm

Laika57‍ ,

If you were in a 3rd world country I might expect to hear what you're saying.  But darn it, this is Canada and he's in a new hospital.  WTF!  I am so angry for you.

I wonder if this is the time, at this so called discharge meeting, to mention that you will take this whole story to the media.  Perhaps the threat of outside scrutiny might change the tune they're currently playing.  After reading Jackwb‍ 's story I have to wonder how many others are in the same boat - you might be shocked.

I keep hoping to read that something good has happened, that he is receiving appropriate care or being moved to a more appropriate care facility.  But it just keeps getting worse, how on earth can this happen in this country!!

I am so sorry for all that the two of you are being put thru.

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Oct 22, 2020 5:02 pm

Well, the discharge planning meeting went ok. They *appear* to be on my side. But again, been there before.
they *say* they won't send him home, even if i had a place, but i just don't believe it.
now the LHIN is supposed to do an assessment to figure out if he can decide to go to long term care or if it is up to me. Then i have to find a facility that will take him, before the hospital decides his stay isn't covered by ohip anymore.

he was near comatose again when i saw him today. Another infection? Or did the psychiatrist actually catch and pass on the virus to him? Or is he just tired because he didn't sleep last night?
questions questions... 

meanwhile i have to do his back taxes, get legal advice for POA and figure out how all this is supposed to work. Whilst i sort myself out...

airfare is $695. It would almost be easy. Except the dog. Not one quote came through to get him flown across the pond. Covid apparently allows mass import of sick puppies, but exporting one big dog isn't up for debate...
so, gotta try and hang in there.

@runner girl the media or some lawyers are a tempting proposition. I'm just too tired of it all to even consider it. I was brought up not to do that kind of stuff. How *american* [eyeroll]

@jackwb oh you can bet they botched something. Hubby, before i knew him, got dropped to the floor during a back surgery. He then needed surgery to fix the damage that caused...
naturalky, he was so happy to finally be able to walk again, he never sued them.
sorry to hear the cancer is back. I hope it turns out to be manageable...
Have you hugged your dog today?

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Oct 24, 2020 5:43 pm

So an update, trying to recap where i branched out for a minute... 

been an exhausting week. Yelled at the team a lot. Got told to be more polite, which i had been for months and been ignored. Had to fight to finally get that list of medications. But it looks like post tantrum they are trying to work with me.
his call buttongot fixed. Not that he will start using it after months of getting what he wants by shouting - he's learned the button won't do anything but yelling will, like my polite requests, really. someone there should read a book on dog training, whatever behaviour gets "rewarded" will be repeated...

i got the list of meds. Nothing too surprising, except he is now on some heavy duty anti psychotics and anti depressants - none of which she asked permission for, like she used to. So that will definitely be addressed at the meeting thursday. (Why ask permission for risperidone and epival but not haledol and tradazone?) They've also found some "dangerous medication" signs for his door that apparently are due to the epival and never were up before. Guess they're throwing the book at me...

some change in GI meds, that i will ask about - but it just looks like they changed calibre of antacids. There's a cholesterol medication that i didn't understand the need for, he never had issues with that, but turns out the cholesterol part is is actually a side effect from binding acidic biliary fluid. It's all pretty logical, i don't see why they think i wouldn't be able to make sense of the list. It's not like i claim to be able to spot interactions etc, i just want to see what conditions are being treated. And with his history, it is usually easy to decide whether they are treating for example nausea or an inflammation of the GI tract. Though with that one it may be a bit of both.

spoke to telehealth and ians pharmacist and they both agree that creon is to be taken with food, not before. I told the nurse, and she promptly changed it and got either a doctor or charge nurse to make it official. Color me stunned.

meanwhile as to his new (near) catatonic state. They put him on fluids, and are running blood cultures etc, again, and the (covid) swab came back positive for influenza. So much for their infection prevention protocols. they're starting anti virals. Sort of good news, but in his state the flu can be serious. And they hadn't even noticed the symptoms. Ok, i only asked him about them after learning the psychiatrist had a virus, but they ought to think that far themselves... (and this morning i convinced myself they were side effects from taking creon at the wrong time). still, waiting for the cultures... i have a theory about the recurring infections. Recurring appendicitis. Far fetched, maybe, and rare, but anything ordinary they would have picked up on a long time ago. Anyhow, i will ask if they have considered it. Dr. google is not my friend though. The complications i can come up with and confirm via google are scary. Like, "are you sure the entire length of intestine is still "alive"?" Scary thought, but i understand that would be extremely painful.  Still, intestinal damage is a complication both with the whipple and c-diff. So, worth asking about... 
got 4 pages of questions written out (longhand) sooo, i may not have to dredge up obscure stuff to prolong that meeting...
simple things really.
how is his heart (failure)? Did it improve after the last infection cleared? How is the weight loss affecting it? When was it last checked on? Is the medication an appropriate long term treatment strategy? Any options other than chemical? 
and so on...
i plan on writing it all out and emailing ahead of the meeting, so that way they can actually prepare answers and run tests if needed - mainly curious about the ca 19-9 markers, they're supposed to be tested for every 3 moths and i checked with the cancer center who said it hasn't happened and ought to be ordered by the currently "most responsible physician". There also ought to be a date set soon for his 6 month CT follow up (december, depending on when they started counting - i don't even know  when his last "cancer CT" was. 

I think some preparation time will help the quality of answers given. 

Who would have thought I'd ever regret not going to med school. Diagnostics is fascinating, when you're not emotionally involved...
Have you hugged your dog today?

Re: My husband recently diagnosed with pancreatic cancer

Posted by Brighty on Oct 24, 2020 5:54 pm

Thank you for updating  us Laika57‍ .  Wow!!!!!!!!!!! That is just so much  to deal with.     I would like to see you practicing more self care.  You are an incredible  person... so dedictated and caring. .. but I want you to take some time for yourself.      Take at least one day break from it all. ....... do something  for just you.    This has been going on so long and you are getting burnt out .  Please keep in touch.   I hope everything  goes well Thursday  but post regularily please.      I want to hear one thing you did for yourself this weekend.     

     
Help is out there. All you have to do is reach out.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Oct 24, 2020 7:35 pm

 I want to hear one thing you did for yourself this weekend.   

Gee, I'm going to have to try the massage chair at the gym 😜
in earnest though, i think i may be getting that flu as well, so i may be forced to take a few days off. So far just a headache, but you know how it is, people say "flu" often enough and you start sneezing....
Have you hugged your dog today?

Re: My husband recently diagnosed with pancreatic cancer

Posted by Runner Girl on Oct 24, 2020 9:09 pm

Laika57‍ ,

I'm so glad to read some better news!

I hope you are feeling a little bit of relief now, maybe able to get a decent sleep tonight. 

Runner Girl 
Never stop believing in HOPE because MIRACLES happen every day!