Stage4 pancreatic

[AnotherGreatYearfck]

My wonderful, gentle, DF was diagnosed this week. He’s 83. We are waiting for a date for his hospital appointment. What will happen in it? Do we have a chance to ask questions? If they don’t offer treatment, can we insist on it?
I’m feeling exhausted already, but need to be there for dad and mum.

@Nodwyddaedafedd Thank you for posting.
My dad has gone from being up for chemo to now really questioning it. I don’t think he’s well enough to endure it.
He says he has no fear of dying, but he is scared of pain.
I feel awful for saying this, but I feel it’s better if it doesn’t go on for months. I can’t quite believe that I have written that! He’s not going to get better. It’s only going to get worse. I feel prolonging it is actually cruel.

Yes MacMillan Nurses can come to your house to wash them, help them get to the toilet etc. they really are amazing . If all needs to be sorted asap if you can.

My advice is talk to the doctor who has immediate responsibility for his care. You need to discuss what you/they want going forward - further treatment or not. Make it clear if he does not want chemo. I would suggest if you can that you visit as you need to be the spokesman here to share that load with your parents. I missed if he is on a pump for painkillers yet. That usually means it's not long. It's shit I'm so sorry.

OP, my dad had Parkinson's, Lewy Body Dementia and latterly pancreatic cancer-we lost him at 82. I just want you to know that dad slept for the last week and died very peacefully. I did not witness him in any agonising pain, just minor discomfort. What I did do though, was for the last few days, sleep in his room so as to ensure he got the pain meds on time as I was so aware of the short staffing issues these places have, and how busy they can be that the thought of him being unable to call for help if in pain was too much to bear. For us it was a huge relief after years of torment, and he'd had a great life. Sending you hugs. X

Macmillan nurses really don't come to your house to do personal care. There is a lot of different terminology involved in the different professionals involved in palliative care, and just to make it more complicated it varies from region to region and not everywhere has the same services provided either. It's becoming less common for community teams to be called Macmillan as well.

OP I would go and see your DF as things have changed a lot for him. I'd also contact the hospice he has an appointment with to say things have changed dramatically, he isn't well enough to travel to appointments and how can he get assessed urgently at home. The hospice will know who the local provider of home palliative care is - it might be them and it might not as it really is confusing.

OP, I am so sorry you are your dad are having to endure the horrors of pancreatic cancer, my dad died of this 3 years ago.
In short he was told late November that after having a successful chemo outcome the cancer had returned and spread and no further treatment was an available. He died just before New Year. He was getting up and dressed up until about 10 days before he died. At this point the hospice team had been out and all medications he needed to keep him comfortable had been prescribed, including a laxative and lorazepam Two days before he died oramorph was no longer working and a syringe driver was then used. He was pain free and died peacefully. I am happy to try and answer any questions if that would help.

Thank you @AnnaMagnani . Good advice

@AnnaMagnanimy df only died last month and it was definitely Macmillan nurses who came to the house every morning and evening though it was only for a few days and right towards the end. He chose to remain at home rather than go into a hospice. Though we only had them for a few days they were incredible.

Just looked back at my notes. The carers funding is NHS CHC Fast Track Pathway: Designed for rapidly deteriorating conditions that may be entering a terminal phase, allowing for immediate care provision.

Happy to answer questions as well.

Thank you @Cassandra1982. I have decided to go up to my parents this weekend and get things in place. I think he needs the hospice service now and not chemo.
Thank you everyone for your kind words and input. I had already, kind of, decided what to do, but you have confirmed it

My Dad died from liver cancer, and his deterioration towards the end was at lightening speed. He was diagnosed in September and died in January. All I learned was that you need to push push push for care and help.

Care at home is tough - you're reliant on district nurses for medication and they're not always terribly reliable especially out of hours and weekends. Dad had a "just in case" supply of medication that paramedics could use but they're not easy to get out in palliative care cases either. If a hospice or hospital bed is available, it's far better for your Dad - less so you and your family. That way, you can be his daughter and not his care co-ordinator. I'm so sorry you're going through this.

I will also add my Dad was driven to the beach for his last look at the sea on the Sunday. He took to his bed on the Monday with a pump and died early Friday morning. He was not really conscious for those last 4 days. He was not in pain. His GP helped out with certain drugs that he was able to get from a hospital that would not normally be in his remit if you get my drift. Sometimes certain meds have side consequences which in the overall situation are beneficial. You can do this. Sending you strength x

It sounds like your dad is reaching the end of his life.
Get on the phone tomorrow to his GP to get medication sorted out for his pain.
(If you don't go till the weekend it'll be Monday before you can talk to them).

Get on to it tomorrow please. If he's already in pain, that needs to be dealt with at once.

I'd actually go up to see him tomorrow. You may not have a great deal of time left.

Thinking of you all at such a tough and sad time, OP

This was also my experience with a relative at home in her last days with terminal cancer , i felt frightened and a little out of control in the middle of the night seeing her beside herself in pain waiting for district nurses to come to her knowing that there was absolutely nothing i could do for her.
If i am ever in this position again i will be a lot more forward and won't hang on until the last minute before ringing them hoping that the pain will subside.
My understanding is that they won't come out routinely to check things are under control in the night /at weekends unless called.
It was a great relief for my relative and our family when she got admitted to a hospice knowing her pain was finally under control.
I am so sorry for your dad and you and your family.

there’s no need for pain. the minute it starts get on the phone and get help. nobody should suffer.

my relative had various painkillers and then a syringe driver which was really good. didnt poop for nearly a fortnight. i’d have gotten laxatives had i known earlier.

macmillan are available 24 hours a day, so when required, don’t worry about what the time is. dont wait when there’s pain just phone for help.

For reference OP, Dad was referred to the specialist palliative care nurse who covered his area by Oncology once he was deemed to frail for any treatment - it took over 4 weeks for them to come out for an introduction and I was phoning Oncology every few days to get this to happen. The system isn't very efficient let's say so you need to have someone in the family co-ordinating and acting as "the chaser".

Sorry to hear this.

Sadly I don't think there is much treatment of the curing type - but there probably is of the living with pancreatic cancer kind.

However do ask - ask for a thorough diagnosis. My Dad was diagnosed with this when he went into hospital with pneumonia and as yellow as a lemon.

He refused further diagnosis - which he was led to believe was invasive, he was in no fit state for prodding and probing. 'I've had a good life"

Turned out he didn't have pancreatic cancer but pancreatitis. I read that on an X-ray they can look the similar as can the symptoms.

3 weeks later he came out of hospital - after 6 months of not dying doctors had another look at him - no pancreatic cancer.

He lived quite a while longer. dying later of a combination of COPD, Parkinsons etc etc.

We put 2+2 together with Dr Google. Looking back I should have gone in to the examinations/discussions myself - hence the sketchy descriptions. My Mum and younger sibling went in. Looking back my Mum had early dementia and younger sibling had to leave room in tears. So no-one was listening.

I should add that we had a hospice at home. They catered well for his changing needs and were there at then end when his COPD got the better of him.

Sending strength to you and your family OP 💐

Thinking of you and your family op. We lost my darling grandad to this in December. I am sending love.

OP I am glad you are going to visit in the next few days. I would try and take some time off work, it will take the pressure off you. My Dad has stage 4 liver cancer and there have been quite a few times where I have had to advocate for my Dad, when my Mum was overwhelmed, couldn't think clearly anymore. I am not sure what your Dad wants, does he want to be at home? I know my Dad wants to die at home, but Mum and I have decided if it is all too much for us, we may need to admit him into hospital/hospice as we can't be too reliant on the nurses visiting with pain relief etc. We will see how we go. Anyway, I guess what I am saying is go easy on yourselves, plans change and the fact that you are there is amazing.

So sorry to hear about your DF. Pancreatic cancer er really is evil. We lost my younger DSis to it just over a year ago.
Unlike your DF she was diagnosed with a stage 4 terminal cancer which they initially thought was ovarian. No less viscous.

Everything went so fast. Six weeks before her initial diagnosis she was still going out with her running club every week. She had lost weight but had been trying so didn’t think much of it. But then developed sciatica which was actually due to the tumour compressing the nerves. She rushed into hospital in severe pain, and after an MRI and CT they found a huge mass in her abdomen. It looked like ovarian and after an abandoned attempt to biopsy they sent her home with painkillers.

She went in for a biopsy a couple of weeks later but due to her not really recovering well after sedation and not being able to empty her bladder she was admitted. She deteriorated rapidly and after a PET scan they realised that she was riddled with secondaries including in her brain. After a couple of miserable weeks in the hospital they managed to find her a hospice bed. She died just over 2 weeks later. Her biopsy results came back 3 days before she died. Even the doctors were surprised it was pancreatic cancer, it is such a sneaky beast. It made no difference to her prognosis or end of life plan. If anything I think it gave her peace of mind that she hadn’t ignored any obvious symptoms since pancreatic cancer is harder to pick up early than ovarian.

Just to give you an idea of timeline she was still able to walk up and down stairs six weeks before she died. But by the time she had the biopsy she was pretty much chair/bed bound.
She was much younger than your DF.

It is an incredible shock when you first find out. While your DF is still lucid and able to chat make sure you know exactly what he wants. You all need to be on the same page and much as you desperately want your DF to have as much time with you as possible, cancer is not a kind disease at the end. Dont waste time you could be spending as a family fighting for a couple of extra days/weeks /months with him.

My DSis had no children and her DH is an only child so my other DSis and I travelled down each week for 4 days and we slept with her in the hospice in shifts so she was never alone. She was one of the most fiercely independent and active woman I have known but in the end she was frightened and scared by how quickly the cancer overwhelmed her.

Dr Google is not your friend at the moment. Pancreatic cancer is particularly difficult to treat even if found very early. The surgery, carried out usually well before stage 4, is brutal and at 87 he wouldn’t survive it, chemo isn’t much better.

We are a medical family so perhaps better prepared for the discussions although no less affected by the news.

If you attend the appointment with your DF ask if you can record it so that the rest of your siblings can hear exactly what is said. When it comes to serious stuff they need to hear what you hear. It stops everyone dashing off in different directions trying to find a cure. Again at this point spending time as a family together is far more important.

And yes I would start putting into place arrangements do you can go and be with your DF. The onchologist will not be able to tell you how long but they will make it very clear if no treatment is advised.

Also the sooner you can arrange stuff to make his life easier the better. The NHS can provide all the equipment you need so he can stay at home and arrange nursing for any medical care.

We thought we had time to take my DSis home when she seemed to rally but it wasn’t to be. Hospice beds are difficult to find so if you have the man power within the family it’s better to try and keep him at home. Hospital wards are soulless when your loved one is terminal.

In the weeks leading up to her death we cried together, joked and laughed. We all had quiet moments alone with her when we could talk and tell her how much we loved her. Most of all we were just there for her so she was never alone. We advocated for her towards the end when she no longer had the strength to talk or call out in pain. We made sure that she was as comfortable as possible. Most of all we all talked about her life and our memories. We got out the photo albums and recounted the stories we’d all heard hundreds of time and we promised her we’d look after her DH.

Viscous- vicious