I need some support, please. Pancreatic cancer in DF. Long, sorry.

[mineofuselessinformation]

My DF has pancreatic cancer.
Diagnosed last week.
Stent into gall bladder attempted earlier this week, not successful.
DF has had a bleed which was found this morning. Now having a total of five units of blood and god knows what else. He's really unwell, and for a man who's never really ailed anything in his life has been brought really low, it's worrying that he's so weak.
He faces being sent to another hospital for a different type of stent via the liver.
I'm trying to support my DParents whilst relaying news to my siblings who live overseas, and am trying to carry on working (I don't want to ask for too much as they're very supportive at the moment), so am working mornings, then going to get DM, take her to the hospital (she can't drive that far), and then come home to relay news to siblings and answer questions.
I honestly don't know how long I can go in like this - it feels never-ending (and I've been handed a pack of useful information with leaflets of symptoms, how to get help via Macmillan etc.) DParents didn't want to take it, I didn't either, really.
Has anyone else been here?
Sorry for the long, rambly disjointed post.
I had a thread here before, which I can't face trying to link on the app.

Been today, and DF thinks he's still bleeding - he's passing clotted blood. He was due to see a doctor who still hasn't arrived after over two hours.
He's starting to feel like the nursing staff are ignoring him when he tells them he's not feeling right, and I am too - I called last night and said I felt a dr should review him as he was saying the same sort of things as before the bleed was found. No one has seen him.

It's a sad state of affairs however I know that sadly a patient often needs "a voice" that's not them. Someone who can ask questions, push for information/advice etc.

Very sad for all those people who have no family or friends strong enough to do this.

You need to get an appt with the consultant.

Apparently he's going to the other hospital (but has been waiting hours for transport).
Yet again, we're in limbo.
Hopefully, he may have the other type of stent put in on Monday from what I've been told, but this is not concrete yet - and there is still the concern of the bleeding, which apparently has been ignored.
I'm very upset that DF has had more worry. Today he said if this is how he's going to feel, he doesn't want to carry on.

And now he's not going until the morning... Just had a call.

Have you spoken to the consultant yet?

He's now at the other hospital after lots of messing around.
He thinks the bleeding has stopped.
He's supposed to see a dr today (hadn't when we left, but hadn't been there that long to be fair.)
I'm keeping my fingers crossed he can have the stent put in soon and we can then make plans for him to come home.
Once the stent is in, it will be time to ask more questions and see the consultant.
I'm really hoping he stays where he is until he's released - the contrast between the two hospitals is incredible.

Oh OP that sounds awful, I'm so sorry your dad has been left feeling like he has. Good to hear though that the new hospital seems much better.

Will be crossing my fingers that the stent can be put in asap and that you get to talk about what will happen next. Hopefully you'll be able to get your dad home soon too.

Thanks, Carrie. That's what we all want too.
As my DF said in his own country way 'I just want to get home and feel natural', meaning he wants to get back into his usual routine.
The new hospital is calmer and quieter, and the staff seem very good (I've had previous experience with dcs there and found the same). They even offered to find DM and I chairs when we arrived, and we got offered drinks when the trolley came round for the patients! They seem much more 'on the ball'.
I'm not working tomorrow, but will ring and give them an update. TBH, I'm hoping they'll offer me the rest of the week off. I don't care if they don't pay me (luckily I have some savings so can afford it). It would just be nice to have a bit more time to reflect as I've been 'on the go' from 6.30am to past 7pm every day so far.

Hello mineof, good to hear he's settled in a better hospital. Good idea to take time off work if you can, this is one of those rainy day events they tell us we should save for.

Just read back through the thread.
Thank you all so much for the kind words and support - they truly help as I don't feel so alone in this.

If anyone's still reading, I'd appreciate some advice:
DBro skyped DM tonight as he had a chance to, and was upset. DM just can't deal with it ATM.
He also told DM that SIL was bothered about the fact that she's messaged DM and DM hasn't replied. DM has replied to messages she has seen. I've told her to say that she doesn't feel up to talking at the moment and to contact me. Does that sound ok?
I'm tiptoeing here between keeping people informed, not allowing Dparents to know too much about how much the family are upset, and tempering the information I pass on. (I've had very emotive messages from DNeice and DNephew for example which I know are too much for DF to deal with, so I've watered them down when passing them on.)
I've decided not to go to work tomorrow. I just can't put on the show necessary to do my job.
There now seems to be a big question mark over whether or not DF can have the other stent. He has to wait for another ultrasound on Friday before anything happens (or at least that's his understanding).
I hoping that this doesn't mean they think he can't have a stent at all, but I am very worried, especially as DF has occasionally said he doesn't think he will ever make it home from hospital. I'm beginning to wonder if that might be true.
I've spoken to the nursing staff since coming home tonight and have been told they've been asking for a doctor to come and see DF all day. I'm going to call early tomorrow to speak to the ward sister to say we need some concrete facts - whatever those may be, at least we can face whatever it may be rather than this constant wondering.
On the plus side, I've come home and de-crapped the grass (my cat poos in my own garden), then run up and down with the mower like fury. It really needed doing, and we've only had two dry days in over two weeks. Also, poor dm's extractor fan in the bathroom has blown up, her doorbell has stopped working and tonight when the electrician came to look at the extractor fan, he condemned the electric shower.
As I've said before, you couldn't make it up.

Hi mine, sorry you seem to have to deal with all this on your own....do you have someone you can off load too IRL?
Re your dads stent...it may be that tumour is in such a position that makes stent insertion difficult and may be risk of infection and/ or perforation especially as he has already bled...this is something you need to ask the Drs
On a practical level, is your dad comfortable ? Has he been seen by pain management team or palliative care team and have you as a family discussed where he wants to be cared for ( if at home, would this now be practical?- a hospice may have been mentioned....ime thes can be very peaceful places, away from the noise of hospital but with the support of medical nursing support which may not be available so readily at home unfortunately , depending on where your parents live
Have you been able to speak to the specialist nurse who will be liaising his care....she might be able to offer some further advice
Try and get some rest when you can xx

Thanks, stop.
I managed to contact the ward sister early this morning and she got a doctor to come and see us. Radiology are looking for a slot for the stent to go on as it's a specialist procedure, so it could be tomorrow or next week. He is having a biopsy on Friday as the new hospital have been told by old hospital they have done a biopsy but haven't been able to give results. DM and DF were much more reassured by that.
As far as the future is concerned, DF has made it quite clear he wants pain to be well managed and wants to end his days in a hospice as he feels it's fairer on DM. I've had my two-pennorth and said I feel the care would be better done by professionals.

Hi Mine I'm glad you're getting some answers now
If you have a good hospice near you that's a great resource to be able to use....they really are very proficient in pain and symptom management and ime are very welcoming peaceful places
I'm currently going through this waiting game with my brother who's been diagnosed with metastatic bowel cancer....I work in cancer research and now it's taking over my family life too
Wish t here was something positive to say but I'm thinking of you xx

If you're still reading, can you please keep your fingers crossed tomorrow morning that the biopsy goes ok?
My poor DF really doesn't need anything else to go wrong - he's quite weak ATM.

Will be thinking of you. Hope all goes well.

Sorry I've been absent, have barely had time to look at my phone this week.

Hoping the biopsy went ahead this morning and that it went well. When will you receive the results?

Thinking of you xxx

I thought mum was supposed to be going for a biopsy but she's been sent a gastroenterologist appointment for a months time. We haven't been told anything officially so I'm beginning to wonder if she doesn't have cancer as that seems a long time to wait if she does. They did say there was a tumour there and mum thought they'd told her it was cancer initially but she was psychotic at the time so she could have imagined it.

Didn't go so well.
DF vomited blood both before and after. Dr came to see him but he was too out of it to understand what (if anything) was said. He's nil by mouth still and it's clear he doesn't want to go on like this.
He's gong to need another endoscopy. (Don't know exactly what for, little info given today.)

Oh mine that sounds so scary. Wish I could help xxx

Oh Mine, that sounds horrific for your poor dad. I can totally understand where he is coming from when he feels he doesn't want to carry on like this.

Did they manage to get the biopsy? It's bloody typical that you're now going into a weekend so there's little chance of getting answers from anyone over the weekend.

Where abouts are you? PM if you prefer. Would love to offer you some help if you're nearby.

They didn't get the biopsy as there was too much blood to see.
I'm in East Anglia, roughly speaking, Carrie.
Treehouse, it sounds like you might need to go to one of your mums appointments to get some information, or you could call the hospital if your mum has given permission for you to discuss her case.
Poor DM was shocked and so was I.
He's now worrying about continence issues as he is weeing so much - never has before. He's been on a drip pretty much since last week (I suppose the doctors are trying to flush as much bilirubin out of his system as possible), and is getting little sleep as a result.
He looked like he was dead when we arrived - mouth gaping open, and had to look closely to see he was breathing. It was horrible.

Oh goodness Mine, that must have been so distressing to see your dad like that. I imagine it's the drip causing such an increase in his urine output - not nice for your dad though. My mum's biggest fear (apart from dying, obviously) throughout her illness was of losing her dignity. It was our biggest battle really and I hope to think we mostly succeeded in helping her retain it as much as possible. Could he be catheterised whilst feeling so unwell so he doesn't have to rush to the toilet perhaps?

I'm going to PM you, we may not be too far apart geographically!

You poor, poor thing, it's dreadful. Utterly heartbreaking and exhausting. My Dad died last November ten days after we'd been told he had cancer so I went through a relatively short period of what you describe. I would recommend setting up a family WhatsApp or email group and sending one update to everyone. If he's very ill ask about the option of transferring to hospice as it's a much better environment and your Dm may be able to stay too. Another practical point is to make sure you understand his finances and what if anything needs to be done to make sure your Dm is able to manage alone. Something difficult to think about and talk about but it's easier if you don't have to worry about money on top of everything else.

Carrie, I've no idea if you got my pm. (Was speaking to DSis.) I'm about 30 mins south of the place you mentioned, but parents live in a different county so experience is probably different.
Raspberry, I can't. DM and DF are very clear that they want me to filter the info given so as not to worry people. I'm very tied by that, but, I have also made it clear that I will not lie if someone asks me a direct question.