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My husband recently diagnosed with pancreatic cancer

Re: My husband recently diagnosed with pancreatic cancer

Posted by CentralAB on Jan 19, 2020 1:22 pm

I suppose they may have mentioned that I also felt he wasn't quite well enough and he latched on to that part. I didn't go see him yesterday. Was too exhausted. I couldn't get myself to go out and put the snow tires on after breakfast and then just fell asleep. Woke up at 8pm.
now the nurse called and said he had a setback. Probably thought I'd abandoned him. I'll have to go in and see. Still have to finish shoveling the driveway and put them drat tires on first. 4x4 bolts. How hard can it be...

@Cynthia Mac, that was a great post. I found it really interesting and insightful.

@WestCoastSailor thanks for that post. I can relate to much of it. I agree, stabilizing meds does take time and cannot be hurried.

@Laika57 Thanks for all that you have been sharing above. I am sure it will be very helpful to others. Just knowing that they are not alone in such struggles.

Efficient communication with staff can be challenging, I like to presume that its because they are often so understaffed and just too busy to respond in a timely manner. One thing I found helpful was to write out a few things that I thought any staff caring for my wife should know. She had been in quite a state a few times and was not able to communicate verbally, how her pain was, or if the meds were helping. I wrote out several pages of non-verbal cues, very specific to my wife so that they would know if she was in pain or not. I gave that to the charge nurse, and they put it in the chart. Of course, some read it and some didn't but for the ones that did read it; it made all the difference in the world.

I also dropped off a copy of that at the doctor's office, gave it to receptionist to give to him, and that turned out to be really helpful, and a med change was made because of it, which really helped too.

I think it is very good that you are recognizing the limitations involved, and I do recall asking doctor and staff to "please keep them longer." Most of the time they will; if there is a good reason, which I know there is in your case. It sounds like you really do need that extension for your loved one to stay a while longer. I had to go to court a couple of times to say similar things about a loved one. Its not easy. But it really is the best way to go if you don't feel safe or if your loved one is likely to harm themselves or others. You have to keep yourself safe. Some doctors/Psychiatrists can be a little biased in their practice with such things. Most of them are not, but the odd one can just make it all so much worse.  If that becomes a real problem, there are ways to address it.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jan 20, 2020 2:02 pm

Went to visit today, he got up and grabbed his things, ready to leave.
I told him he couldn't.
He told me to leave and not come back. "He thought I was his friend" ya de yah (and a bunch of hurtful things). I stormed out in tears and his doctor told me to "take it easy" - I could have smacked her.
An hour later he called requesting I tell the doctors to just let him die.
If he were well, he would know that's no way to get out of there. He's also not eating "to make a statement".
I ended up yelling at him (something to the effect of "does he have any clue what he is putting me through, acting like this"). and hanging up the phone.

I can't do this. I am not a good enough person. If it weren't for the dog , I might just quit doing anything. Leave it all behind, buy a ticket and go somewhere, anywhere, else.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jan 21, 2020 8:59 pm

Small update, I guess. He did call and apologized, of sorts. Said he'd be on his best behaviour.
but he's not eating, and has lost 15lbs in 3 weeks. And neither oncologist or surgeon want to do anything until the mental stuff is sorted.
meanwhile his condition is deteriorating. Fever, white count up, blood pressure down. They did a CT today, no results yet.
will go in and ask for answers tomorrow. Also probably yell at the surgeon. How can he be concerned about how hubby will deal post surgery, if, on a form, he would be supervised and taken care of at the hospital 24/7. Sounds pretty much ideal to me... 

Re: My husband recently diagnosed with pancreatic cancer

Posted by Brighty on Jan 21, 2020 9:42 pm

Laika57‍  glad that hubby apologized.        I'm just so sorry you are going through this whole ordeal.     I don't even know how you are keeping it together.       I'm concerned that he is not eating.    Does he have no appetite, or is he in pain when he eats?        Maybe try some Ensure shakes just to get some calories in him?    Let us know when the CT results are in.     Are you getting any sort of support from anyone?      

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jan 22, 2020 7:41 am

He says he doesn't like the food. After throwing a "standard" meal tray through the hallway and insisting it wasn't enough to keep a gnat alive, they asked what he wanted to eat and changed his menu. he ate it for a day but now he doesn't touch it anymore (same stuff every breakfast, lunch and dinner are identical, every day). When I go in, he has a collection of breakfast and lunch trays and nothing but the ice cream is touched. Most patients get to order their meals but he doesn't. Maybe I can talk to the nurses and order stuff for him... meanwhile I'll be bringing him outside food.
I don't think he would drink ensure. But I'll ask.
support so far has been some money and well wishes. Welcome, but lacking a personal touch. And here I am sounding ungrateful.
the one person who is surprising me is my dog walker, she checks up on me and reminds me to eat and get stuff done. Haven't had her walk the dog in a year, so she's not getting anything out of it. Except, she found it funny when a client fell and broke and arm and a leg, so I'm not entirely keen on speaking openly with her, have this niggling doubt my troubles are entertainment to her... still, it's nice talking to a sane person every so often. 

Re: My husband recently diagnosed with pancreatic cancer

Posted by Runner Girl on Jan 22, 2020 9:49 am

Hi Laika57‍ ,

You're definitely riding a very scary emotional rollercoaster.  I see you're taking breaks when you need them and I applaud you for that.  

I'm glad they have decided to keep him for another 4 weeks.  When my dad was in hospital it was the most difficult thing ever for my mom to have to travel there and tell them, in front of him, that he could not come home until he was well.  He was in for several months and every month they had a "hearing" to go over his progress and reinstate his stay.  Mom was able, after the first one, to be conference called in.  What amazed me was the strength she had, that I didn't anticipate.  I spent alot of time talking with her, helping her provide information (she'd dictate, I'd transcribe and email to the doctors - mom didn't use a computer).  When he was finally sent home she laid down the law and told him if he refused his daily medication even once he'd be going right back to the hospital.  Many times he sat at the table for a good long time before taking his pills, but he always gave in.  I've never been so proud of her as how she stepped up and dealt with this situation.

I am proud of you.  You are doing your very best in a very difficult situation.  

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

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jan 22, 2020 2:11 pm

And today he's all weepy and doesn't know why he's there - convinced he was in a car accident.
must have an infection, because they're giving him IV antibiotics. No nurse or doctor available to talk to all 3h I was there. The relief nurse didn't know a thing that was going on. I understand they lost a patient down the hall and were busy comforting the parents. But still, they're obviously not doing a great job taking care of him.
I requested the doctor call with an update. Heck they didn't even ask for consent for the CT yesterday. Nor an xray he had earlier. Is giving consent once, enough for them to be allowed to do more? Not how I understood it... 
ah heck, I have work to do. Will decide who I am going to yell at later...

Re: My husband recently diagnosed with pancreatic cancer

Posted by Cynthia Mac on Jan 22, 2020 4:28 pm

Runner Girl‍ , that’s a great story you told about your mom! 

Laika57‍ , your husband’s moods do seem to be very erratic - throwing a meal tray is still pretty combative, by most standards. Wow, that must be hard for you to deal with.

I’m not sure if they would need a consent to do tests if he is signed in to their care as he is. I don’t remember signing anything when they did tests on me the day I went in with chest pains (which was 10 years ago and turned out to be nothing.) Of course, that might depend on whatever province you’re in.

Do you think you could “bulk up” the food you’re bringing him? Add protein powder to anything from his tuna to chocolate milk? Trail mix and mixed nuts for snacks?

I really hope that you soon get the opportunity have a good-old sit-down with your husband’s doctor(s) and have a wholesome discussion about all these questions you have about your him and his condition.
“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 Jan 23, 2020 3:00 pm

I did end up yelling at the first doctor who actually called. If it had been to update me, I might have felt sorry, but no, it was for consent to do a lumbar puncture.
they think he may have an infection. Which he would have acquired in their care. I might add.
I had written a list with questions, but it was in the car, after a 3h hospital visit and not getting any answers 2nd or 3rd day in a row.
so I brought up every random bit I could remember.
she wasn't aware of his weight loss (wtf?) Tried to downplay my observation that even a small amount of food practically knocks him off his feet.
didn't have any info on the cancer treatment. (Or how long til they would do something even if his mental state doesn't improve, or how much weight he can afford to lose before not qualifying for treatment anymore) basically told me to call oncology. Fair enough, but I know they won't call back with any pertinent info. Just going to tell me to wait and see.

The CT and antibiotics (and anti virals) were because of the fever.

I told her my concern about the hydromorphone, which again she downplayed and said he'd only had a very little, 2 days ago (coincidentally, that was the day he made me cry). I'll have to keep an eye on that. Because they are obviously not taking me seriously. even if I am imagining things, why not just switch to something else and say "see, no difference".

I also sent my list of questions to patient relations this morning. I'm pretty sure her call wasn't in answer to that, she would have known what I wanted answers for, but I may have been flagged as someone pestering for an update.

the one thing that did come out of this, the doctor has prescribed him a supplement to help with his weight.

between that, being upset at having to deal with it all, and my husband calling every 20 minutes to ask me to come back to the hospital, it's just an awful lot of work for a smidgeon of a win just there.


Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jan 23, 2020 3:01 pm

Oh, Runner Girl‍ love the story with your mum. Will have to take a leaf out of her book when my husband comes back.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Runner Girl on Jan 23, 2020 3:13 pm

Laika57‍ ,

Well, I'm glad they called and you were able to at least bend the doctors ear a bit.  Hopefully patient services is able to get more action for you than that. 

Thank you for the comment about my mom's story.  Thanks also Cynthia Mac‍ .  I didn't think she had it in her, but she showed me that she followed my lead and stood up for herself, finally!  She became a strong woman and I told her many times how proud I was of her.

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

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jan 23, 2020 11:52 pm

Ok, is it worth getting a second opinion or even a transfer to a different hospital?
I just don't feel like the guys here are prioritizing his long term survival.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Cynthia Mac on Jan 24, 2020 8:46 am

Laika57‍ my concern about moving your husband to a different hospital is the possibility of being set back, either in time or treatment. Because he is currently there for a mental health issue, I’d be afraid that a new placement might require another period for observation, and that could include a repeat of some of the protocols and diagnostics that have already happened. That could result in an extension of the time being focussed on him for those reasons rather than some of his other issues.

Of course you’re concerned about getting his physical health issues addressed. If your husband was my dad, I think I would try to work with the hospital administration where he is now. I would write (because that’s what I do) to the administration or patient advocacy office of both hospitals to request a care conference with all of his the professionals involved to try and get answers to my questions and develop a comprehensive strategy for my dad going forward. 

“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 Jan 24, 2020 11:18 am

Cynthia Mac‍ I see what you mean. But I've honestly got to question whether these doctors intend to treat my husband at all. Or in any time frame that will reasonably make it worthwhile.

Note, they haven't even bothered to let me know what stage it is yet, NO information other than he has pancreatic cancer, with possibly some lymph nodes  and veins involved, didn't see anything worrisome in his chest CT, and his anti body count went from 2300 to 200, which is still elevated, but not outrageous enough to warrant immediate action. No CT to see local spread that I know of (shouldn't that be the very first thing they do?) - Shall I do my own attempt at coming up with staging and outlook here? There's no oncologist with an actual office I can call with questions, the guy supposedly taking care of my husband has done nothing but find reasons not to do anything. Can't even tell me "it's not advanced enough to need to rush things" - which would at least stop me from wondering every day if this is the day that makes the difference between a positive outcome or not. This is the main reason I am so angry and impatient. What I know about pancreatic cancer i, people die from it. Usually quickly. A friends mother died 3 months after diagnosis, her sister 9 months. And they are sitting there twiddling their thumbs and either can't or won't tell me otherwise.

My husband had been going to princess Margaret for regular CTs and whilst his doctor there didn't like him (he refused preemptive surgery) at least she wanted to do something. And she would know more of the history, if that makes any difference. Even just to ask for a second opinion. 

I've got to quit questioning everybody. But that's their own doing by not giving me proper information and leaving me to stew and pick apart each and every thing they did and did not say.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jan 24, 2020 12:29 pm

Ok, the oncologist called. Guess my 3am email did have an effect.

the cancer is localized, and they don't want to wait "weeks or months" to treat it. I know he can't give me specifics, because "it's a difficult situation". Noone wants to deal with crazy people. It's darned inconvenient. Oh, sorry, they don't think it would be safe. Uh huh. Slightly off the rocker but surrounded by a gaggle of nurses is less safe than a little better mentally and at home with only me to take care of him. I totally [don't] see it. I did tell him that, and it made him stop to think.

I didn't yell at him or cry.

he said he will arrange for my husband to see the surgeon next week. If necessary as a transfer. Yes, it's only to assess whether surgery is now an option. 
so, guess maybe something will end up happening.

meanwhile hubby reports he saw a nutritionist and someone who taught him how to eat for better digestion. And they wheeled him off to an ultrasound. 
Will have to check with the nurses for more info.

But why does one have to throw a tantrum to be heard? It's a waste of energy for everybody.


Re: My husband recently diagnosed with pancreatic cancer

Posted by Cynthia Mac on Jan 24, 2020 4:45 pm

Laika57‍ , I think you’ve concluded that there is a difference between asking questions and “questioning everybody.” On the rare occasion when my professionalism was called into question, whether by a customer yelling at me, or a supervisor “calling me in,” it took a lot of self-control to sit quietly and listen to their explanation before I “bounced back” with a response.
Your CTs from Princess Margaret can be requisitioned by the doctors treating him now, but, depending on how recent they are, they might not want them. It’s certainly information you can offer them, though. 

 ​You have numerous concerns, and maybe it will help to try and “narrow things down” a bit. From your second last post, a big thing that jumped out at me was something that would stop you “wondering every day” if this delay is hurting your husbands chances for successful treatment of his cancer. That would be a huge relief to you, I think!

I know you wrote down a list of questions. You might want to go back over it, add any more questions you have, and highlight or put a big star beside your “top 5.” Another idea would be to put them into a sequence that “clumps” them into groups. This might help you with your meeting with the surgeon next week (one of the good things that came out of today.)

I wouldn’t say that “no one wants to deal with crazy people” — in your husband’s case, he’s had some pretty serious reactions to pain medications, and I would think that they want to be very certain that all that has been stabilized before they do something (like surgery) that is apt to require pain meds. Sometimes, too, patients can react badly to anaesthetic - a friend of mine recently experienced that when her mom had to be hospitalized when she “had an episode” a week after surgery. They concluded that it was partly an after effect of the anaesthetic, combined with dehydration.

You’re doing well. You’re still advocating for your hubby, and you’re starting to see some advancement. I know it can seem like a snail-paced effort, but the wheels appear to be turning.
“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 Jan 24, 2020 7:28 pm

Yeah, stepping back and looking at it, that was the one underlying question that drove me nuts and made me obsess over everything else. "How much time can we afford to waste here?"
they still haven't exactly answered it, but I'll take them agreeing that they don't want to spend months waiting as a win.
which will help put the other stuff into perspective.
the surgeon is a cocky one. Hope he's as good as he believes himself to be. I sort of feel bad that they'll go through all the trouble of transferring my husband for that appointment (and back I suppose), knowing the guy will spend all of five minutes talking to us. Had he spent more time last time, he may have picked up on the problems beforehand. Ah well, spilled milk and all that.
time for pizza and a glass of wine.

yeah I don't think the old CTs will do much to help. Especially since they never picked up on the cancer. But they were started by Dr. Alice Wei, who I gather is a big deal, though she went to the states to practice now. Anyhow, the idea was to observe the development, since, when they first found the cyst, they didn't have much in long term studies as to whether they always lead to cancer and in what amount of time. So I figure maybe Dr. Wei's successor may want to be kept in the loop for sciences sake. I was also debating asking for a 2nd opinion or a referral to someone who was at least part way familiar with the case. That was before the (current) doctors called back saying they're actually considering treatment now. Really not sure about involving yet another set of doctors. Getting three of them to talk to me is enough work.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Essjay on Jan 24, 2020 9:11 pm

Laika57‍ oh my, I take a week off to recover my energy and your world goes crazy!

You are having a real time of it.

I am glad you are finally getting doctors to talking about treating the cancer. You seem to have a well informed view on how successful that might be. It is a dreadful cancer, and one I experienced through my mother in law. I think your point that just because he has a mental illness shouldn’t preclude him from treatment is on point, they need to get on with it...

A couple of things in this thread I wanted to follow up on...

Are you making time for you to work? You mentioned you need to to make the rent. Now you know he will be in hospital for the next few weeks can you make a schedule? I know I find work a great distraction when life is pants (sorry, a britishism crept in there)...

Are you sleeping better? Your comment about falling asleep after breakfast and not waking until 8pm was a concern to me.

Do you have someone you can talk to about finances? I was wondering if you are bearing the financial burden yourself or whether your husband has sick pay or an insurance policy you can draw on.

And how is the dog coping? Ours tends to mope a bit and be unsettled when one of us is away.

best wishes Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jan 24, 2020 10:23 pm

Essjay‍ yeah, it's certainly a roller coaster.
getting some updates and minute progress today certainly made me feel better, after being upset and drafting emails until 3am. Hey, they did get the doctors talking to me though.
the "patient care manager" said she will remind them to keep in touch with me. But also admonished me to help keep my husband calm, meaning I ought to stay calm around him. Yeah, last night he pushed all my buttons and I yelled at him and stormed out again. After he had called me every 20 minutes asking for food, the dog, a lawyer, updates, more food, my presence, clothes, and the moon...
I pretty much told her I could not be calm and reason with him if I had no information to work with. She promised to keep me in the loop and work out some strategies to help with distracting him when he is fixated on stuff.
Work, I've not been near as productive as I ought to be. But hopefully this change in attitude will help now. I have a client who has a bunch of architectural renderings for me to do, which should keep me busy for 2-3 weeks and pay the rent. 💖 that guys vision, so it won't be a hardship.
Hubby has some income, and if I can get his paperwork done, his pension should start not too long after.
sleep, I hope if I am not worrying and writing up emails with questions for the doctors at all hours, that'll settle too.
and the dog, I think he misses both, me and the husband. He isn't used to me being gone for hours at a time, and apart from walks (he's more of a scent hound and not a social walker) I basically just sit with him. I have to remind myself to make time to play. He has taken to curling up to me which makes me glad it isn't summer 😉 he truly is as big, and hotter than, a person...

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jan 25, 2020 10:04 am

So much for keeping calm. He called 4 times between 6am and 6:45, telling me he was hungry and I should bring him food. NOW.
on the 4th call I got angry, I don't do well when I get woken after only 5h of sleep (yes, he also called at 1am) so not ripping his head off on the first call was a tremendous achievement.

i brought him dinner last night, plus protein bars, apples, nuts, juice... he says it's all gone. I don't believe he actually ate it.
I yelled at him and told him he wouldn't be hungry if he had eaten his hospital dinner like he had promised.
turns out he likely ate the snacks instead.

I know I'm supposed to keep him calm and all that, but i've got to set boundaries or I'll go insane myself.

I'll have to ask the nurses if I can stash his snacks with them, so he is only allowed treats after he has eaten his meals. If he's going to behave like a toddler, then I may as well treat him as one.

or I will end up taking his phone away.

still have to walk the dog and do my husbands laundry before visiting him. That's a 2h job. And I am sure he will be calling every 10 minutes.

taking the phone away sounds like a viable option just now.

Re: My husband recently diagnosed with pancreatic cancer

Posted by Laika57 on Jan 25, 2020 2:03 pm

Went in, saw he hadn't eaten, and he had destroyed the canvas print of our dog. argued with him. Left.
I will block his calls and tell the nurses  to let him know i won't go see him until he has eaten all his meals for 3 days in a row. I was going to make seeing the dog the "carrot". But the way he is talking to me, I will not stand for.
I cannot be supportive if I don't sleep and have to fight him on top of the medical system. Oh, and work, and find a place to live, and pack, and move...
2pm is too early to break out the rum. Chocolate milk will have to do.


Re: My husband recently diagnosed with pancreatic cancer

Posted by Runner Girl on Jan 25, 2020 4:04 pm

Laika57‍ ,

To say he is a handful is a huge understatement.  Oh my goodness.

I'm glad you've put your foot down.  You need to take care of yourself.  Enjoy your chocolate milk.  

Give the pupper a hug.

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

Re: My husband recently diagnosed with pancreatic cancer

Posted by Cynthia Mac on Jan 26, 2020 3:09 pm

Laika57‍ What a catch-22 - you need the phone in case there’s an emergency, and that’s also your husband’s only means of reaching you, and he’s doing it at all hours. I’m sorry to hear that your husband is still exhibiting desctructive behaviour.

Do you think the hospital staff could take his phone away so you can get some sleep? Another idea might be to see if you can borrow a second phone from someone and give the hospital staff that #. That way, if there’s an emergency, they can call you on the second phone, and you can “hide” your own phone at night, knowing they can still reach you.

Good for you for setting boundaries. “Is there any benefit to him in having a phone?” Might be a question to add to your list...

I wish I could offer more help.
“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 Jan 27, 2020 1:01 am

Cynthia Mac‍ I've got my phone set to do not disturb 7pm-7am except for certain callers (and repeated calls in case of emergencies).
The hospital is on the list that will get me any time of day.
hubby is not anymore.
I wanted to hang on to his phone - most of our business goes through his number. But it's a battle I gave up on.
he still calls me from the nurses desk, since he can't always remember how to work his phone. They do a decent job of telling him it's not a good idea to call me at 5am though.
I had debated blocking it via the find my device app, but that would just play into his paranoid tendencies just now. They're mostly gone, those meds seem to be working, but the phone may push him too far.

I stayed home and did nothing all day. Will regret that choice tomorrow, when the workload sinks in.
I was going to go to the hospital today and then realized mid afternoon that I was procrastinating because I just couldn't handle going.
Hubby phoned and asked if I would come by tomorrow, and I guess I will. If nothing else, he's got to sign the paperwork for his pension.
he sounded more reasonable, and said he talked to a doctor who told him he had an infection behind his eyes and he would be released tomorrow. Real or not, i guess i will find out when i go to visit. Maybe they found something viral in the spinal tap? Doc said the bacteria cultures came back clean.

I don't know what it is with taking apart the print, he said it upset him, then when I went to take it home he said it meant so much to him... he just pulled the staples out, I can fix it in 5 minutes tops, but that he would do that to a picture of our dog just really bothered me.
Though, come to think of it, if I get bored enough, better hope there's no tools and dis-assemblable items around...