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Palliative care nurse phoned - is this bad? Hand hold please.

43 replies

WishIWasSomewhereElse · 13/07/2021 12:18

My dad had a radical nephrectomy after Kidney Cancer. He also had Bladder Cancer simultaneously - unrelated type.

He was treated with Paz, after the KC returned, which stabilised and shrunk them. Then he was diagnosed with Primary Pancreatic Cancer, so the Paz was stopped, then the KC grew all over. He also has Stage 4 CKD, and AKI.

He's been treated palliatively only for a couple of months, and despite being more frail, has been OK. No strong painkillers needed, we thought he would last a while.

He stopped eating much and also stopped drinking tea (which he drunk by the gallon all his life), in the last couple of weeks.

He fell on Sunday and was taken into hospital. He is dehydrated and his electrolytes are all over the place. The doctor said he would be in for 2 days.

Today the palliative care nurse phoned mum and asked if she had anyone with her. She said that the next 24hrs are crucial and they're treating him right now, but he's not responding.

We've got an appointment to go and visit him (mum, Dsis and me).

On his notes it says that he wants to die at home.

They also said they did a scan and there is great disease progress.

Tomorrow it is a year and a week since Dbro died and dad seemed to give up after his "boy" died.

OP posts:
mbosnz · 13/07/2021 12:26

I didn't want to read and run.

I don't know what it means, but can I give you a virtual handhold and a hug? Hard times for your Dad, you, and your Mum. I've been there, and it's not easy.

BritInAus · 13/07/2021 12:26

I'm so sorry to hear this x

IdblowJonSnow · 13/07/2021 12:32

Massive handheld and hug OP. Thinking of you and your dad.
Wiser posters will be along I hope.
Flowers

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unstablemabel · 13/07/2021 12:38

I would prepare yourself for the worst OP. Sounds like in the next 24hours they may look to withdraw treatment if he is still not responding. It’s good you have a palliative care nurse involved, they tend to be better patient advocates than the ward doctors Flowers

Quickchangeartiste · 13/07/2021 12:47

Hand hold for you here, OP.
I have been in your shoes; as pp says, it does not sound good, but the prime consideration of the palliative care team will be to keep your dad as comfortable as possible.
Sending you strength for the coming days 💐

Bumzoo · 13/07/2021 12:56

I don't know what the call means really but sending lots of love to you.

Babygotblueyes · 13/07/2021 12:56

I am so sorry. It does not sound like good news, but I hope he can get what he wanted and what works for you all. My mum died in January, the last few months were hard and the last few weeks very tough. Much love to you and your family.

CheeseCrackersAndChutney · 13/07/2021 12:58
Flowers
Duckyneedsaclean · 13/07/2021 12:59

I'm sorry @WishIWasSomewhereElse , it doesn't sound very hopeful.

Would you think about asking the palliative nurse of arrangements can be made for him to come home? Especially if he continues not responding to treatment. Flowers

WishIWasSomewhereElse · 13/07/2021 13:10

Thank you all.

@Babygotblueyes I'm sorry you lost your mum so recently Flowers and Flowers to everyone else for their losses.

I will see if he can come home. The last time he was in hospital they said they'd put a note on his records, to not admit him again, so not sure why he was taken in, but in the back of my mind I hope the treatment works.

I was going to take DD to see him last Sunday (before the fall), but he was asleep and she wanted to play with the toys she bought with her birthday money. She gets upset seeing him. I am kicking myself I didn't take her now.

It's similar to my Dbro. He went in with a UTI, then developed Aspiration Pneumonia whilst in there, they said he wasn't responding to treatment so withdrew it. It's too soon, too familiar a thing to happen again.

Just waiting for Dsis to pick me up.

OP posts:
AlmostSummer21 · 13/07/2021 13:13

Big Hugs 🤗

Babygotblueyes · 13/07/2021 14:10

@WishIWasSomewhereElse

Thank you all.

@Babygotblueyes I'm sorry you lost your mum so recently Flowers and Flowers to everyone else for their losses.

I will see if he can come home. The last time he was in hospital they said they'd put a note on his records, to not admit him again, so not sure why he was taken in, but in the back of my mind I hope the treatment works.

I was going to take DD to see him last Sunday (before the fall), but he was asleep and she wanted to play with the toys she bought with her birthday money. She gets upset seeing him. I am kicking myself I didn't take her now.

It's similar to my Dbro. He went in with a UTI, then developed Aspiration Pneumonia whilst in there, they said he wasn't responding to treatment so withdrew it. It's too soon, too familiar a thing to happen again.

Just waiting for Dsis to pick me up.

Dont kick yourself - all you can ever do is make the best choices you can at the time and keep putting one foot in front of the other. Big hug to you.
EKGEMS · 13/07/2021 14:30

I'm so very sorry to read about your father and late brother! Sending you hugs.

user615632456321125 · 13/07/2021 14:35

I'm so sorry, I wish there was something more I could say or do for you all Flowers

MsSquishy · 13/07/2021 14:43
Flowers
overtherainbo · 13/07/2021 14:46

I am so so sorry. It hurts me to read. I've had a similar experience with both my grandad and mother just last year. I'm 27 and I didn't really know anything about this sort of thing at the time. If I would do anything different I would sit close by as much as I possibly could. If he is still able to talk learn as much as you can. Sending all my love and prayers 🤍

Crockof · 13/07/2021 14:48

I am so sorry, if he is able to come home please make sure they send him with the end of life prescription, hopefully it won't be needed but it makes a difficult time easier if you have it at home ready.

Adm1010 · 13/07/2021 20:03

I’m sorry to read this . It sounds like they are saying they will treat for 24 hours and if he isn’t responding them look at care that’s more focused on his comfort .

Nuuktown · 13/07/2021 20:04

So sorry OP Flowers

regularbutnamechangedd · 13/07/2021 20:07

OP my heart goes out to you. I've been in your shoes.

One point, and please heed this, if he wants to die at home ensure that you and the family are supported and know what to expect. End of life care is hard work and I know you will do the utmost for your loved one, the toll on you all could be a lot to process.

Geamhradh · 13/07/2021 20:11

Sending you strength OP Flowers

MaggieFS · 13/07/2021 20:14

Thinking of you Thanks

Suzi888 · 13/07/2021 20:15

I’m so sorry.
My father had pancreatic cancer, he was very sick and admitted to hospital suddenly.
He was able to return home, after a couple of days of being diagnosed where we looked after him and he was kept comfortable. No treatment as such, only pain relief.
Macmillan nurses can sometimes help, they were offered to us but we declined.

Workinghardeveryday · 13/07/2021 20:21

So sorry to hear this op, no advice but sending love xxx

WishIWasSomewhereElse · 14/07/2021 11:47

Thank you all so much, I apologise for not coming back yesterday, my head was all over the place.

Dad was very much like my brother was at the end. It's more his eyes than anything, they look sort of glassed over/unfocused, which I remember vividly from Dbro. He was confused as to where he was and what was happening.

We spoke to the doctor who said they were going to give him 24 hrs more, then withdraw treatment if no improvement.

His Creatinine level was 800 (googling brings up figures under 10, so I have no idea what this means, but the Dr said it should be 200). He would need dialysis to survive Creatinine that high, but they think he is too sick to withstand it, along with the speed and ferocity of the cancer.

I spoke to the palliative nurse today, they've now withdrawn treatment. They are trying to expedite discharging him home, but it may be a few days. This is worrying as the doctor said that without treatment he would survive 24-72hrs. However, she said they can send him home quicker if he dips as long as paperwork is completed.

So sorry to all those who have been through losses. Thank you all for the advice and support Flowers

OP posts: