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My husband recently diagnosed with pancreatic cancer

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jun 26, 2020 6:15 pm

Runner Girl‍ and Essjay‍ 
it's been a tough week. His doc called me tuesday and that's also when Ian last called me. He's not got his cell on nor is he answering his bedside phone. I hate bothering the nurses, but today I caved and called to see if there was any change.
They put me through to him and helped him answer the phone. But he's still not back to reality. Worse almost. He now thinks we can move into his room at the hospital and everything will be just fine. Nevermind the impossibility of it and this not helping me know what to do one bit...

 

Re: My husband recently diagnosed with pancreatic cancer

Posted by Essjay on Jun 26, 2020 7:16 pm

Laika57‍ sorry it’s been tough for you. He’s in the right place and being cared for. Time to step back and let them handle him just now.

Are you catching up on sleep? How the pooch coping without Ian around?

Essjay xx
Triple Negative Breast Cancer survivor since July 2018

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jun 29, 2020 12:33 pm

So. I'm back to writing emails to patient relations.
the nurses implied/ promised him I would be allowed to visit today, then left it up to me to tell him otherwise, because restrictions may have been adjusted, but he wasn't in bad enough shape to warrant visiting privileges.
so I requested patient relations inform the nursing staff not to use me to placate him,  as that is just setting me up for verbal and emotional abuse. And "my mental and emotional health matters too". I actually said that. 
I also requested an update from a doctor (it's been a week, and he's now got a cough...), I asked they move him to a room with a window (supposed to be standard practice with delirium patients) and that I be allowed to visit (again, pretty standard practice with delirium).

now we wait and see if there's a reaction.

Essjay‍ the dog is a bit out of sorts. Who can blame him. I tried teaching him nosework, but he's lost interest. I think my not sleeping well is tiring him out. I try, but usually end up playing sudoku til 2am... 

Re: My husband recently diagnosed with pancreatic cancer

Posted by Brighty on Jun 29, 2020 2:29 pm

Good for you standing up for yourself Laika57‍ .  I just feel bad you are going through  this.   Are you taking care of yourself?   Are you talking to anyone about all this?     How about treating yourself to something  special today... get some DQ maybe to  pick yourself up.you deserve  a metal for staying sane in all this.     I can't even imagine  what you are going through.    I'm glad you have your sweet doggie.     
Help is out there. All you have to do is reach out.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Cynthia Mac on Jun 30, 2020 7:03 am

Laika57‍ , I am sorry your husband’s medical team aren’t factoring in your own health concerns, and that the doctor is going that long between updates. Dad had two “hospitalists” when he was in hospital, and I know they have different styles, but even the very efficient “city doctor” called me at least twice a week, and it was she who called me when Dad’s condition deteriorated. As you note, it’s extremely hard for a loved one to hear you can’t visit because they “aren’t in bad enough shape.” That is one of the extra stresses this pandemic has put upon caregivers.

It sounds as though you’re being diplomatic with the people you’ve encountered on this experience, but there comes a time when it’s alright to set the diplomacy aside and let them know in clear terms how this is affecting you, as you did with patient relations. You could also request from the charge nurse a copy of the hospital’s policy regarding patients with delirium, which would let her know that you’re going to start advocating for him to have that window room. I had no idea about any of that until Dad’s “country doctor” explained it all to me.
“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 Essjay on Jun 30, 2020 9:16 am

Laika57‍ sounds like you are an awesome advocate for yourself just now - well done.

I hope they do sort Iain out with a window so you can wave to him and he know you are there, even if you can’t visit in person xx

Sleep - sounds like you need to work on that for yourself. You need to be strong when he comes home. Have you ever used a sleep app? I can recommend the calm app - lots of choices for soothing sounds. A friend of mine finds the uk shipping forecast (it’s on the app), puts her to sleep - its a sound of home for me though... A technique I use is to imagine myself lying relaxed in bed, and then to count backwards from 10,000. It’s hard and boring - puts my brain to sleep...

Hope the dog cheers up a bit - ours is struggling in the heat (32c yesterday). She’s off to daycare today and will be happier in The air conditioned building. I was trying some ‘waiting’ with her yesterday for treats. She was hilarious. She was trying everything - her best sit, her best lie down, offering paws, making her sit tidier, giving me kisses, high fives, the lot. She’s not very patient. She got the treats!
Triple Negative Breast Cancer survivor since July 2018

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jun 30, 2020 12:18 pm

Argh. Patient relations told me yesterday 4:55pm that they forwarded my email to the patient care manager and she would be in touch if not last night then first thing in the morning. It's lunchtime now. So I called her directly. And the number the lady gave me goes to the voicemail of the patient care manager on a different floor.

I'm getting rather tired of this.

Cynthia Mac‍ thanks for the tip on the delirium policy. Will definitely ask for that.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jun 30, 2020 2:23 pm

Two voicemails to the patient care manager, one left with patient relations and no response.
I finally lost it and wrote an email asking them if they'd prefer me to call the police to check up on the neglect my husband is reporting to be suffering.
That may be stretching it a bit, he is not ththe most reliable source, but he keeps telling me he is in pain and that the nurses are refusing to help him clean up when he has bouts of diarrhea. That does not paint a pretty picture and it is all the information I am currently getting.
 

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jun 30, 2020 4:03 pm

Gotta love switchboard operators. she put me through to the hospital president. amazingly enough she answered her own phone. not straight to voicemail like the minions.
and surprise surprise, she made people call me back...

they will look into special visiting privileges, apparently he does have a window in his room (so not sure where the basement comment came from), his infection is cleared up and he is making progress mentally. pathology report has not come back yet (is it normal to take more than three weeks?) but the blood tests seem "back to normal".
phew. i'd feel bad for chewing them out, but honestly, not returning phone calls in a timely manner is plain rude.
 

Re: My husband recently diagnosed with pancreatic cancer

Posted by Kuching on Jul 1, 2020 8:06 am

Laika57‍  Good for you!  You did what needed doing and got results.  Don’t even feel a little bit bad - it’s the hospital staff who should be feeling bad about your having to go to such extremes just to get somebody’s attention.  Way to go, girl!  

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jul 3, 2020 3:49 pm

Apparently they're going to skip rehab in favour of (hopefully a lot of) in home care.
He's supposed to come home as soon as they can set it up.
May be as early as Monday.
he is still a fair bit confused, the occupational therapist at the hospital does not sound as confident about his handling his own care as the doctor did.
ah well. We will see how it goes. Meanwhile I've got to see about finding a taller walker, a shower chair and a grab bar for the bed....

Re: My husband recently diagnosed with pancreatic cancer

Posted by Essjay on Jul 4, 2020 5:51 pm

Laika57‍ good to hear he is making progress, although I hope the discharging doc listens to the occupational therapist...and the Homecare support is really going to work for you...

How are you doing? Are you ready for him to be home on Monday?

best wishes. Essjay xx
Triple Negative Breast Cancer survivor since July 2018

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jul 5, 2020 1:29 am

Essjay‍ ready? Uh, no. I miss him a great deal, but I am very concerned about his mental state.
he phoned me a dozen times tonight, clearly disoriented as to time and place again.
I am just dreading it will be a replay of some of the nastier episodes from before he went in for surgery. Namely his not accepting guidance from me regarding his insulin and medications, though demanding help with pretty much everything else at the same time and yet being angry over not being able to do things himself...
And the confusion won't make it easier for me to get him to listen...