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.

Today has been pretty horrible. DF has been losing blood from the other end and was terribly worried. I'd phoned this morning to ask a dr to call or come to see us - nothing. I pretty much broke down when I got home.
I got hold of the ward sister this evening, only to find that she had some information and could have told us this afternoon.
They don't think there is any fresh bleeding. If there is any more, then dad will have an angiogram to find it (poor thing, but needs must). He is still in the queue for the stent. At least that's a bit more positive.

I'm sorry to hear things aren't going well. It's all so wearing, having to constantly chase. I hope he gets the stent and that it helps.

So do I, Frankly.
It's the only light at the end of the tunnel ATM.
He's getting a bit depressed now, I think (and I don't use that term lightly). It's now three weeks and one day since I first took him into hospital and we don't seem any further forward.
He's very worried about the blood (can't get his head around it being expected I think), and genuinely believes he may never come home.
Physically, he was a bit better today (and he is stable),but mentally he is focussing on how unwell he feels - and he is weaker than he first was.

Hi mine

I just wanted to say how sorry I am to hear about your DF. My DF died last week, 4 1/2 months after diagnosis with pancreatic cancer. Unfortunately he was unable to have a stent and we also had a lot of changing advice/cancellations and changing expectations from the hospital. I think what I came to realise and tried to accept was that unfortunately with this disease it seems even the doctors etc are sometimes don't really know what is going on/will work.

My DF died at home and, although I won't say it was an easy journey, his last few days at least did seem to be peaceful. I found that when we were in the very last stages the doctors and nurses were brilliant at managing the pain relief and gave him a peaceful final day.

Sending you lots of strength - it seems so impossible or at the time but you do somehow get through this. I'd also suggest taking some time off work if you can - I kept ploughing on until a very good colleague insisted I take at least a week off. It was the best advice as it gave me some time to just get a bit of space to sort things out in my head and made the next month more manageable.

to you and everyone else who is struggling or has lost someone to this terrible disease.

Greydiddi, I'm so sorry to hear about your DF, but pleased for you that his passing was as 'good' as it could be - that's what I want for DF too.
How are you, Frankly?
Greensleeves, if you're still around, I'm thinking of you.
Same old, same old today. DF is still saying how weak he feels. He's noticeably more yellow again and had a biopsy booked for Friday, with no date for the stent (we saw a doctor today and we had a déja vu of last Monday). The doctor didn't understand one scrap that it is a huge strain for DF to be there, and for us to not have him home.
I checked with the doctor that outpatients who have booked stents go first, and that inpatients just have to wait and hope for some free time, and a specialist to be available at the same time. This is indeed the case. Whilst I totally understand that other people are waiting for the procedure, I'm left wondering just how ill DF needs to be to be considered more of a priority.

I am so sorry that you are going through this. A very close family member had pancreatic cancer almost five years ago and has made an absolutely amazing recovery and is now back at work and enjoying life. It was awful at the time and my thoughts are with you. She shrunk down to nothing and could only eat special drinks for a while but all went went and she has made a great recovery.

I'm pleased for you that your family member recovered, Sparkly.
Sadly my DF's diagnosis is terminal.
That is what makes all of the waiting around so hard. We know he is going to die and want him to spend as much time as possible in his own home.

Firstly may I say how sorry I am to hear that you, your df and your family are going through this. My dgf went through this although it was only 2 week from diagnosis until we lost him so I do understand how you are feeling. You also sound extremely stressed in terms of what you are doing/feel expected to do. Please please do utilise your hospital staff, that is what we are here for! You should not just be given Macmillan leaflets, the medical team will arrange everything for you if that is what you wish. If updating family members is becoming too much, give them the ward number and let the team update them on your behalf. Please don't feel as if you have to do everything, concentrate on df and remember to look after yourself too, the nurses should be including you and your family in tea/food rounds, if not make sure you ask for something. If your df is in pain, ask for a meds review ASAP. There is always someone available even in the middle of the night. You are not alone. My thoughts are with you x

Mineofuseless apologies for not reading the full thread. Please look after yourself you are in my thoughts.

Really, it's ok sparky. And sorry that I got your name wrong!

Leanin, I couldn't possibly rely on them to pass on any information to others (and my siblings live overseas) - today we were told the complete opposite of what we had previously been told, that DF can have the stent before the biopsy. He now has to have the biopsy first and apparently the stent has to wait for the results. No reason given.
To say I'm annoyed is an understatement.

I'm so sorry mine, it makes things so much harder when you are also dealing with uncertainty and stuck in hospital. I hope you manage to get your DF home soon

Well, DF actually had his biopsy today (originally told yesterday, then cancelled), and it went well. (He even told the nurse he was hungry when he got back, which makes a change.)
That's one hurdle over. Now on to the next one.

Oh Bless you

I know that you have your lovely Dad to look after and that you are doing a sterling job. Am glad that his biopsy went well - but please don't forget to look after yourself too

Knackered, (oh how appropriate your nn is for me ATM!), DM and I spoke to dsis last evening.
Two hours later she messaged to say she's booked flights to come home for three weeks - arriving next week, bless her. It's a weight off my shoulders TBH, but I will also be careful she doesn't feel the strain too much either.

P.s. I spoke to DF tonight. He sounds like a different man. He must have been terrified of what might happen at his biopsy after the last three times of endoscopy. (I know the grammar isn't right there, but can't think well enough to correct it.)
Also no more blood, so that's all good.
I've got my work planned for next week (will need to go in early Monday though) as well - have worked on and off all day - so that's out of the way.
Hoping things might go onwards and upwards now, at least for a little while.

I'm not sure there's anyone still there, but I'm carrying on anyway as this is a good place to put my thoughts.
DF is still very weak, but more positive today when we arrived. He might have a slot for his stent tomorrow - it could still not happen.
A doctor came to see us today, closely followed by another from the palliative care team.
The sceptic in me wonders if this is all a follow-on from my conversation on Tuesday morning where I asked some more probing questions such as how long outpatients have to wait for stents.
Maybe I should have done it last week.... Who knows.

I'm here and following. Never know what to post though. Sending you much supportive vibes xx Hope the palliative care team were good. They were fab for my nan a few weeks ago.

That's kind of you, Treehouse.
The palliative care doctor was very helpful - but DParents aren't ready for that yet. I think they need DF to be home and relaxed, and then they can talk in private about how they want things to be. It's very difficult for them to express how they feel in hospital as they are such private people.
DM read some of the leaflets last night and is very afraid of how things might be. I've spoken to her about it, and explained how I'm dealing with it (by concentrating on the immediate, whilst having the rest of it at the back of my mind), and I hope that was helpful to her.
Dsis being here will be very helpful too as she works in the healthcare industry.

DF has just called me. He's just vomited blood again -a lot. I've called the hospital and told them I want to know what's happening, whatever time it is. They have bleeped a doctor.
I'm so upset (and frightened), and guess this means the stent is off for tomorrow.
I'd really begun to get my hopes up and think that maybe things would go in the right direction now.
Of course, I won't let DM know tonight as she needs her sleep and she will worry.
Dear Lord, what more must we deal with?

Oh Mine. hugs. I hope you get some answers. Your poor father x

Treehouse, I just don't know what to do to 'make this better'. I've told him not to panic. I don't know how to feel.
This is truly shit.

Anyone out there who can give me some advice? Should I call my brother and sister and tell them to come home?

I'm so scared....
I'm drinking coffee now in case I need to get there quickly. Will call the hospital in a while.
Just don't know what else to do.

Mine I really feel for you and your df and dm. I would keep trying the hospital to ensure they get a doctor to your dad. Not sure where your db and dsis are but you sound like your shouldering everything on your own and need some support. Can you at least call them and explain what's happened tonight ? They can at least provide some support to you over the phone and it prompts the coming home conversation. Thinking of you and hope your father is seen soon xx