Nursing cancer patients at home when do I become concerned?

[Totallybannanas]

My dad had a stent fitted Friday, he had a week of barely taking anything in and was put on a drip. Following the stent, the food the hospital gave him was awful and just made him feel sick and that's if they remembered. I have managed to get him to have a M and S mini meal, and a few sips. He has taken himself to bed, and is now sleeping. He keeps waking and is complaining of being cold, he has lost alot of weight so wondering if this is it. I don't want him to go back to hospital again. He looks gaunt around the face and red under the eyes (not sure if he has been crying). I feel like he has given up. He seems broken. He has shakes but barely taking them. When do I become worried? What should I be looking out for? I'm completely on my own with this, no real advice or support no nurses coming in.

Sorry to ask but what is his prognosis? Is he on rehabilitation care or palliative care ?

If on palliative care it is completely, totally normal for him to have little appetite and to be sleepy. Gently encourage him to eat and drink small amounts if he wants to and if there’s anything at all he fancies then it’s fine (my grandma only wanted lemon curd on soft white bread cut into tiny squares and she wanted to be fed only this with a cake fork for a week before she stopped eating altogether).

It can be hard to go through so please make sure you have support for you as well

He has oesophagus cancer, stage 4 terminal. He is still fairly mobile and independent. We've since we've come home he's just slept. We aren't under palliative care yet. But weeks stay in hospital he is broken. And how do we know when we are there and at the palliative care stage, we aren't getting any visits at home or support apart from a few carer make meals. My dad doesn't even want that, it I'm not sure either can be here 24/7 and do everything 😕

Do you have a local hospice charity? If so I might try them initially. They can bring other agencies together or parts of the NHS to assess him, make sure he gets the care required and pain relief etc either at home or in a hospice bed or a nursing home. None of which should cost him or you anything in the UK.

I would echo what the last poster said and look for a local hospice - he wouldn’t necessarily have to go in, but they can definitely offer support. Our local one is a fabulous place and I know many people who’ve used their facilities. The support and care is second to none (for both the patient and their families)

And also they will give you advice about other things you need to discuss with your dad, such as an end of life care plan, respect form, DNR form etc.

Can you get in touch with MacMillan Nurses and ask for advice? From their website - “The Macmillan Support Line offers confidential support to people living with cancer and their loved ones. If you are worried about money or treatment, or you just want to speak about whatever matters to you, we’ll listen and support you.
Call us for free on 08082399397”
(Edited because phone number wouldn’t copy)

I would be concerned from now. It's years ago now (and the NHS has been decimated since then) but as an illustration, six months before my mum died we had community care / district nurses every three days to administer pain control patches. Two months in they were coming daily, and a month before she died they were paying visits both morning and evening. I'd speak to your GP surgery to ask for a visit from them.

They also referred her to our wonderful local hospice for two one-week periods for 1) pain control case conference and 2) respite to give me and my dad a break.

You can also self-refer at some hospices - would agree with other posters to find your local one and give them a call. A Maggie's Centre if you have one may also be able to advise.

You could also ring up the MacMillan support, they are great. They offer support to relatives as well as patients. There are forums as well where you can interact with people in similar positions.
https://www.macmillan.org.uk/cancer-information-and-support/get-help?sc_camp=970C6EDF35E54314AC7E65656E4A746A

I would contact your GP, see if they can do a home visit. Does he have a DNAR? Even if it isn’t now you will likely need help/equipment at some stage so you need your dad on their radar, before it reaches crisis point. I’d also contact the local hospice as they might be able to advise you on what to do/who to contact.
I also don’t mean to be harsh but he doesn’t get to decide about outside help if you cannot cope. It is exhausting, physically and mentally being a long term carer. If you need help, get it in.

Have you tried the little Ambrosia pots of custard? My mum survived on them for the last few weeks of her life (pancreatic cancer, died at home).

I would contact his GP and update them on how he is today and they can advise/reassure you.

So sorry you are going through this, OP.💐

Completely understand your desire to get him home. I did the same with my mum and she ended up dying at home (which was better than being in hospital in her case). She had support from us, her GP and a local hospice.

What you are describing absolutely is palliative care - you need a referral to your local community specialist palliative care service urgently, either from your GP, District Nurse or Upper GI Specialist Nurse. If you aren't known to the District Nurses you also need an urgent referral to them - can be done by GP or Upper GI Nurse.

What happens now depends very much on what your Dad wants to do. Does he want to go back to hospital (bearing in mind what they have to offer there may be very limited) or does he want to stay at home being cared for?

The easiest way to get things rolling for you is likely to be phoning the Upper GI Nurses - number should be on his clinic letters - or the Acute Oncology Nurses at his treating hospital - if you can't find the number get switchboard to put you through. Honestly they should have made all these referrals for you already.

So far I've got a hospital bed at home and I've had an OT assessment and physio. The OT have referred us to a home care provider that can do meals and things, she has also referred us to st Luke's to get in touch and I think district nurse but I can't remember about the nurse. There is just so much to take in and remember, I have hat to write it down but I'm also sleep deprived. I've just heard him get up and go for a wee. The OT nurse was hear a few hours ago and he was up and chatting. I think it's his mental health declining that's not helping.

I'd definitely chase, either the GP for a home visit and ongoing district nurse involvement and/or a hospice referral (or can you self refer?).

I posted on your previous thread, but recall that we also had a home visit from the hospice a couple of weeks before DH went in for a pain respite stay, to assess where he was, what services they could offer etc.
Just seen your latest post while typing this, can you follow up with St Lukes yourself, try and get a home assessment visit arranged, so you get into their system.

We also had dietician involvement via the hospital following initial diagnosis. This was NHS.
They recommended fortified milk, mixing full fat milk with full fat milk powder, for extra calories (but this is 8 years ago).
Then Fortisip and Fortijuice - that was prescribed by the GP after he'd had them during the hospital stay.

St Luke's in Harrow?

You need to phone their 24 hour helpline now and make it clear you are in crisis
0300 020 0224

Basically ring them for everything, it's too confusing to keep track of all the services and numbers, they will co-ordinate for you.

Thank you he did get out of bed, and had half a bowl of soup and some lemonade earlier. I just don't know if he up or down, I asked the hospital for a district nurse referral but have no idea if they have done it. He has bags of medication here, I have no idea what and when he should be taking. There's no care plan and they were going to send him home alone. I will ring the GP tomorrow and maybe his cancer nurse, I honestly don't know if I can do this. He is becoming very emotionally dependent on me and I have turned into his carer the last few days, but I feel very tied right now. I seem to be seeing the sad vulnerable side. I'm only here because I took a week's sick leave. Hospital has broke him.

Oh Totallybannanas, I'm so sorry your dad, and you, are going through this - it is so hard. Do you have any support for yourself?

I think once you get into the system then things happen, but it can be difficult in that transition period to get the ball rolling. I don't know what his GPs are like but I'd start there and the Hospice.

I have home carers coming in but he doesn't need personal care not really, he is actually independent and was talking about shopping earlier. I left him a few hours to go home and come back and he looks and sounds poorly giving orders from his bed.

I did have OT out this morning and I also have age concern coming. I think the OT has done an referral to st Luke's to get in touch. I'm sure she also said the district nurse but if I'm honest, I can't remember I'm so emotionally and mentally drained. I can't be here 24 hours a day, I can't force feed him. I don't feel like I can do this not on my own.

The thing is the nurser and consultant a week ago said he wasn't there yet. The dietician said yesterday he isn't there yet. I don't know if he is just tired and depressed and wanting to give up. I can't believe they haven't even referred him to the district nurse. They wanted to send him home the other day, he told them he lives in his own.

I saw your other post about your dad
I have had similar, except he didn't make it home from hospital following a second admission.

From what you have said, it sounds like the district nurse is the most important person on your list to call. Also, the doctors should have given clear information about what medication to take and when.

If you don't mind me asking, what is the financial situation? The difficulty I had
with my dad, at one point the hospital were saying they'd have to send him home and I couldn't have managed. I then rang round care homes and most of them said they would take a patient in that situation as long as a DNR was in place. He wasn't officially placed on palliative care at that stage, which made things really complicated.

Dad was given Fortisip for as long as he was willing to eat. I think your father should get that on prescription.

It sounds like your dad is in a better position if he can go to the bathroom unaided for example. So a carer would be helping him to eat and so on. Perhaps take him out for a walk if he's up to it and if he wants to.

my dad didn't eat much in the hospital. I didn't push him to eat. I was in there a lot at meal times and if he didn't want anything, I just asked him to drink a bit.

I'm so sorry you are going through this.

I cross posted with you

Yes, I can relate to the "he's not there yet" and my dad was also very tired and depressed. I'm afraid it's probably part of the pathway here.

Thank you, they gave us a bag of meds plus he has load at home I can't keep on top of it all and I'm too knackered if I'm honest. Speaking to the OT nurse today he doesn't have a DNR, I would have thought the hospital would have asked this, surely they would put one in place? Anyway that means a phone call to the GP and another person to see, to speak to. I just feel like I'm the one co ordinating the care and no one is talking to each, no one is checking him. I will definitely ring GP/district nurse tomorrow I was just too overwhelmed and exhausted today. Dad's now sat in the chair dosing, he can't get comfy yet he's been sleeping fine in the hospital bed all day, I'm also meant to be sleeping in this room as moved his old bed into there, but not sure I can now🤦. I sound heartless but I feel like he is going to a complete pain and difficult patient. And I can't deal with that on my own. I have the shakes here, but he has eaten better and again ist trying to keep on top of it and get into a routine. But then I shouldn't even be here!

Can you call his CNS team tomorrow and ask for advice? Tell them you are unsure if he should be under palliative care management now as his situation has changed since his recent hospital discharge. Sorry to hear this. Sounds tough.

Yeah, I will see what they say. It might just be his mood and fear that is making him like this and him becoming attached to me. I mean they surely wouldn't have released him if they thought he was turning palative.

My mother recently passed so I might be able to give a bit of advice.lung cancer she was only home from hospital 3 weeks.
Youl will notice the lack of eating and the skin will go a different colour. It's a horrible thing to go trough so I feel your pain.
The aniexty will increase that's nit a nice thing to witness but try stay strong

My Dad somehow managed to survive tonsil and throat cancer. He was the lucky one.
However the treatment means he now has MDS leukaemia and it can't be cured. Sorry. I think I'm just having a rant. Huge hugs OP. It's a bit like having a baby, no one gives you a manual on how to deal with a parent dying