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My husband recently diagnosed with pancreatic cancer

Re: My husband recently diagnosed with pancreatic cancer

Posted by Brighty on Jul 26, 2020 2:28 pm

Good for you Laika57‍  for speaking up .I pray that they listen and get you the help you so desperately  need.    The letter in a way is advocating for other caregivers too.    So many caregivers  go through  this but don't have the courage to speak up about it.     The letter can be sort of an 'eye opener '.      You might have also encouraged  many caregivers  on the site to speak  up.too.   thank you for being an example of courage.    keep us updated.    
Help is out there. All you have to do is reach out.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jul 26, 2020 11:11 pm

Brighty‍ don't mistake desperation for courage.
I don't think I have any capacity left to deal with crap, so I may as well own up to it and tell them. Seriously, what can they realistically expect one person alone to do?
At the hospital there are a minimum of 2 people 24/7 with lunch breaks and nights off. Plus the place is geared up to deal with patients like him, making it impossible for him to get out of bed, and there not being a fridge to raid or a bathtub to try and  step into. No access to medications other than what he is prescribed at any one time. No car keys, no stairs.... heck, they even control his food and can take blood sugar readings before he eats...
And like I said they have drugs to calm him, IVs if he doesn't drink enough... and they can ignore him without risking having the police show up at their door. And no personal investment so they don't care if he is trying to use emotional blackmail or just being plain mean.
I think they just don't realize what it is like to care for someone 24/7 because they never have to.
Have you hugged your dog today?

Re: My husband recently diagnosed with pancreatic cancer

Posted by Brighty on Jul 26, 2020 11:32 pm

I still think you are a very courageous  lady Laika57‍ .   What  you are going through  is just awful  and many would have bailed.  You are sticking it out and advocating  for yourself and for ian... that to me  shows a lot of strength of character and courage...  plus you are working  too!!!! You are a very strong person and I admire you.   
Help is out there. All you have to do is reach out.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Kuching on Jul 27, 2020 7:33 am

Don’t sell yourself short, Laika57‍ .  You have shown - and are still showing - an amazing amount of courage.  If  some of it is born of desperation, it’s still courage.  And what I most admire about you is that you have managed to keep your sense of humour throughout.  Whatever happens, don’t lose that!

Everything you said about all the ways a caregiver’s life is so much harder than a nurse’s really rang true for me.  I felt exactly the same way.  If I could have left (or at least gone to sleep) at the end of each twelve hour shift, life would have been a lot more manageable.  Luckily, I had a GP who understood that, and told me to let him know when I couldn’t handle things at home any more.  Then it was back to the hospital.  But at that time, I could spend all day every day with him in the hospital, which made it a whole lot easier to make the decision to go back there.

Sending you hugs and strength...

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jul 27, 2020 10:26 am

Never thought of myself as litigious before, but I just threatened to sue his old employer for harassment. 2 years and they're still giving their contractors Ian's and my numbers to call when they arrive on site. Wasnt an issue really before, just a nuisance, but calling him while he is in hospital is unacceptable. How hard can it be to update a contact list?
If it happens again I'll just tell the bloody contractor that the job was canceled and they should just go home.
maybe that'll cause enough of a stir to force them to fix the issue....

psychiatrist just called too. They're messing with his meds again.
he didn't cooperate with the assessment so she didn't do it. Apparently he was taken off the anti psychotics. Now he's more delusional and paranoid than he was last week. So she asked for permission to start them again at 1/4 of the dose he was getting. What a joke.

I'm supposed to be calling CPP but I'm too angry to bring up the patience to sit on hold for an hour or two. 
Have you hugged your dog today?

Re: My husband recently diagnosed with pancreatic cancer

Posted by Runner Girl on Jul 27, 2020 10:55 am

Laika57‍ 

Good grief, companies should be keeping their information up to date!

I have to wonder why, then they planned to release him, they would take him off the anti-psychotics.  He's difficult enough for you to manage.  

It almost seems that those who are managing his health in hospital are not speaking to each other.  A meeting of all his in hospital caregivers might be a good idea before they decide to send him home and set you up for failure again.

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

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jul 27, 2020 11:06 am

Runner Girl‍ the other hospital had doubled his dose. This one felt he was too sleepy and subdued (duh, because of the infection, but what do I know).
so instead of cutting back to his previous dose, they decided to discontinue it altogether. Makes sense. To someone, apparently. Argh. It'll be weeks before his dose is dialed back in, especially if she only checks on him once a week. 

now she was hinting about him being discharged to "somewhere with more help" - but, again, been there before. Will believe it when Isee it.
Have you hugged your dog today?

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jul 28, 2020 2:02 pm

Argh. Just typed an update and the page reloaded instead of posting. Must've hit a title when moving the page.

doc called to ask for permission to do a gastroscopy.  Apparently the same CT that "showed no infection" last week, now shows inflammation and they want to check it out further... (update, since apparently i have been useless long enough for them to get it done and come back with a result - it's just stomach acid.)

surgeons office finally returned my call from july 8th. No comment. I wasn't very nice.

@edwardtrishsmith 's post about the grief counseling really upset me, because i, too, felt very much abandoned by my counselor. So i finally sent her a text and requested someone else who "won't miss every single appointment and might check in more than once a month". Got an instant apology, woweee, and her colleague called me back within 20 minutes. She had no clue about the complexity of the situation but will make inquiries and find me help. We shall see. I've been promised that before. But it wasn't while i was bawling my eyes out. So maybe they'll take me seriously now. Can't afford for caregivers to fall apart now, can we, that would put a strain on the system....

The dog is no help today, apparently snot and tears offend his delicate sensibilities. Giant pansy that one ;-)

oh, wrote to the patient care manager requesting a proper, full picture update. Peeves me when i find out around 7 corners that they found stuff last week that they didn't tell me about. I included all the questions i could think of and a request to tell me any other pertinent information that i might not even know to ask about. (Oh, and i asked whether the oncologist had bothered to check his scans and post op chart yet or whether he was still procrastinating , in which case how would i go about getting a different oncologist.)

i am soo tired and drained and behind on my work... 
Have you hugged your dog today?

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jul 29, 2020 5:30 pm

Ok, funny (or sad) story on COVID craziness. I went to visit ian today, and when the lady at the entrance, who was quizzing me on flu symptoms, spotted the box of pastries in my hand, she made me check it in at the table where people drop off items for patients, so they could sanitize and deliver it to him. Silly.

i was there for ten or so minutes, when the team (discharge coordinator, charge nurse and patient care manager) showed up to whisk me away to a conference room and talk about my concerns regarding discharge. They all seemed a bit appalled by the story of what has been happening. Not just three weeks ago, but since December. 
I appreciate their concerns, but other than "there is no plan yet to discharge him any time soon" they didn't actually make any concessions.
this conference, however, required me to hang up the call with employment insurance and there wasn't enough time left to call them afterwards.
So that's put off to friday. Again.

meanwhile ian wants to know whom i met on my trip to australia, and what kind of jet planes i was flying out of korea. Maybe i need to watch the news to understand where he got those ideas. He was better informed about the restaurant that burned down down the street from us. I only knew because of the sooty footprints at the entrance and the the charred smell this morning... 
Have you hugged your dog today?

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jul 30, 2020 3:17 pm

Finally got the call from the doctor. Another of those miscommunications though. Instead of giving me the overall picture of what's been happening, she started out dumbing down the explanations I'd already been given. Took a while to explain that, no, the cardio team had never given me an update, and that the ER doc had said liver failure and noone followed up with news on that etc. I didn't need an explanation so much as actual information. And i don't *need* blood cultures done immediately, but i want to be sure they're done before discharge. I explained the last hospital had sent him home with enough tylenol to suppress fever, and two serious infections, and i really just wanted to avoid that happening again. Finally she understood.
turns out, common practice is to do antibiotics for a certain number of days and then declare the infection cured without follow up testing. No wonder it keeps coming back....
she won't be on service next week, but left notes to her replacement to follow up with cardio and get the cultures done before he is sent off to the rehab floor. Great. Oh and mr. Oncologist is still MIA and ignoring her emails. No surprise there. 
Have you hugged your dog today?

Re: My husband recently diagnosed with pancreatic cancer

Posted by Cynthia Mac on Jul 31, 2020 12:40 pm

Laika57‍ I just got caught up on reading this thread (where ARE the days going?) and wanted to say your July 26 post was awesome! Don’t get me wrong, there’s good, solid evidence in your other posts that you’re organized and on top of this whole situation, even on the days when you indicate you don’t feel as though you are!

I think it was that post where you talked about that “pitch” in your stomach when they talked about sending him home. I got the same one when they talked about sending Dad home from the hospital, so I understand fully what your whole body went through in that moment, and I was relieved for you when I read on and saw that they’re keeping him for another while.

Sending encouragement!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jul 31, 2020 4:58 pm

And, he's off to Neverland again. Went to visit. I figured he would be in bad shape because he hadn't called. And he barely said 3 sentences in the hour i was there. The doctor asked how i found he was. I just said "he's obviously got an infection again". I had told the nurse 2 days ago that he was deteriorating again. Guess they didn't believe me. They're running cultures again. Doctor asked if it was ok to give him more antibiotics. She will also give him fluids, though she's worried about overloading his heart. But "he will need it when he goes septic". Oh joy. Being right does not feel so good right now....

On the bright side, i FINALLY got his EI sorted. Sad, but true, instead of giving her the specific amounts and explanations of which that i had spent 2h on hold with CPP to get, i started with the broad picture - "his pension started in february but they took it all - 4 months worth - back when they gave him 2 months of disability." She put me on hold, then 5 minutes later she had it all sorted. Now why couldn't my previous 4 calls have achieved the same?
Have you hugged your dog today?

Re: My husband recently diagnosed with pancreatic cancer

Posted by Brighty on Jul 31, 2020 6:04 pm

Laika57‍ so sorry you are dealing with  this once again.    I have no idea how you keep your sanity and sense of humour.     I hope Ian gets better  soon!!!!!
Help is out there. All you have to do is reach out.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Essjay on Aug 6, 2020 2:18 pm

Laika57‍ hey, how are you doing? How’s Ian’s infection this week?

Essjay xx
Triple Negative Breast Cancer survivor since July 2018

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Aug 6, 2020 8:28 pm

Thanks for checking in Essjay‍ .
i went to see him today. He seems better physically but mentally, not so much. While i was out with the dog this evening he kept calling me saying his surgery scar had opened up and there was a gaping hole in his stomach and he was going to call 911 and take a cab home to meet the ambulance.... (i immediately called the nurses desk to make sure they checked on him)
needless to say, while i was navigating the dog through a crowded park, i fully expected to be coming home to an ambulance and maybe a fire truck and police car and broken windows or however they would try to gain access if noone answered the door... phew. Didn't happen. But not fun.

In other news, someone finally lit a fire under the oncologists backside and he called. Naturally, he hadn't even looked at the pathology report before dialing my number. How the heck does he think he is giving me an update if he hasn't even done his homework? Anyhow, after 30 seconds of studying the report, he pretty much told me to expect a recurrence (cancer cells near the margin and because pancreatic cancer is so aggressive). They may consider more chemo and/or radiation, once Ian is better. I asked about immunotherapy, and he says there is no evidence that it works on pancreatic cancer (i shall go study up on that). So, pretty much any further treatment will be delayed indefinitely....
Have you hugged your dog today?