How long can he/we suffer like this

[Itsjusttoohard]

DH has cancer. Initially, things seemed to be going quite well but it's spread and he's been told he has 18-24 months.

He's 51 and we have teenage children.

He's been in hospital with agonising pain for two weeks. He had to deal with receiving his prognisis on his own with no one to hug him. Their aim is to sort out pain relief to make him comfortable enough to come home. ATM he can't move at all.

There's a possibility that an operation and/or chemotherapy could ease the pain but atm he's too ill to have it. There doesn't seem to be any prospect of him becoming well enough.

He's been seeing pain management daily for 2 weeks and they've increased his pain medication to the extent that he's slurring when he speaks and is struggling to understand what the doctors are telling him. And yet he still can't have a visitor or anyone with him when talking to doctors.

I haven't seen my dying husband for 2 weeks, neither have his children and there's no imeadiate prospect of doing so. Absolutely no visitors allowed until "the last days".

So, what happens next? If they haven't managed to get his pain under control in 2 weeks, will they? Presumably it's only going to get worse as time goes on?

And if they don't, surely they won't keep him in hospital, with no visitors for up to 2 years?

It's really hard to get any information. We haven't been put in touch with any support services (should we have a social worker?) and doctors are talking to him but not to me. I did get a call yesterday, but that's the first one in 2 weeks, after asking daily and of course I have new questions after hearing that they don't plan to treat his cancer, whcub I didn't think of yesterday.

I know everyone's under tremendous pressure but I don't know how to carry on.

I am so sorry OP - I don't know what to suggest but when my dad was in hospital in Oct I called the hospital every day to try and speak to a nurse or doctor to find out what was going on. I also made sure that my dad's mobile was on speaker whenever the doctors came round to speak to him and took a note of everything they were saying. If necessary you could even record it.

But you'll need to fight like hell, I'm afraid against the ineptitude of the NHS 💔

And keep pushing to visit him too - call, email, everyone everyday. It's the last thing you need right now but it'll be the only way.

Im so sorry that sounds an awful situation to be in.
Not sure what to suggest but wanted to give a hand hold

@ConspiracyOfOne

And keep pushing to visit him too - call, email, everyone everyday. It's the last thing you need right now but it'll be the only way.

Would that help or just make me a nuisance? He's really happy with the daily care he's getting, I wouldn't want to jeopardise that by upsetting people and they're really clear that there are no visitors anywhere in the hospital until the very end, so it feels like I'd me making a fuss with no chance of success. The man in the bed opposite has just been told he has 4 months and he can't see anyone either.

I'm wondering if I should be investigating support to care for him at home, but I don't know if that's possible/how to go about it.

Plus, one of us needs to earn a living

Have you contacted Macmillan? They should be able to advise you.

www.macmillan.org.uk/

I would second having his phone on to share consultations - this was suggested to me as I am currently having cancer treatment.

I helped my mother nurse my father at home then nursed my mother both with terminal cancer - but much less than 2 years. I had to have the right set up - bed, rails etc and nurse visited. There was a lot of disagreement between the drs/nurses about how best to go about this and we needed to be very clear in ourselves what we wanted in order to navigate that. I suggest you contact Macmillan to discuss.

Hospice is another good option but you'd want to discuss visiting under current curcumstances.

So sorry you are going through this.

If you are working - hospice may be best.

I didn't want to read this and not let you know how my heart goes out to you all.

I would totally agree with the advice to speak to Macmillan - they have helped me several times and are fantastic, they will give you valuable money advice, at a time when you don't want to be researching this stuff yourself.

Also agree re hospice, our local one is not just for the final days, they help with managing and living with cancer, they advise and arrange stuff for the home too.

One day we will question how we lost our humanity during this.

Huge virtual hugs to you all.

@ConspiracyOfOne

And keep pushing to visit him too - call, email, everyone everyday. It's the last thing you need right now but it'll be the only way.

OP I agree with this 100%. I have a good friend who is a doctor and it often isn’t impossible to see them if you make enough fuss. They just have to limit it and do it at a time when it can be properly organised in an evening etc and where there it certainty you don’t have covid (was my understanding anyway). You could offer to do a test privately then isolate or even ask to get one at the hospital. I’m not suggesting this would work for you or it’s a guarantee, everywhere will differ. But fucking hell its absolutely disgusting that you’re not allowed to see him.

I get you may not want to have to cause the disruption etc which is completely understandable.

What the NHS is doing to families in this context is horrifying and as you can probably tell, i don’t agree with it.

Do you know if the palliative care nurses at the hospital are involved? Are you able to call the ward and ask? He may not have been referred to them but he should be and they are usually very good at liaising with family and will also help with making sure everything is in place for when he can come home. I'm very sorry that your family is going through this especially in the current situation

Yes, palliative care are dealing with the pain relief.

I've tried calling the ward but have never managed to get an answer.

Just add to the trauma, we both had Covid just before Christmas (I work in school) and whilst I realise there are no guarantees, that does seem slightly less of a concern now.

I’m so sorry to hear this. Please bear in mind hospices have similar rules on visiting at the moment to hospitals, we went through similar with my poor step dad, he went in for biopsies and then came home after a week rather than a hospital or hospice so my mum could spend his last months with him, with carers coming in every day from the local hospice, is that an option to you? With regards to pain relief please push hard if you need to, as my step dad suffered so much from insisting on taking just paracetamol for a while, morphine was eventually given and he was so much more comfortable. 💐

Also contact the hospice directly and ask for assistance, that is what we did and they should communicate with the hospital and you can register with Macmillan online and there is a forum that you can join that might help you. I am truly sorry 💐

He's on huge does of morphine already.

Yes, I thought hospices must have the same visiting rules. He can't move at all atm though, so I really don't know if it's even possible for me to care for him at home, plus whilst my employer is being brilliant at a local level, I only have limited pay if I take an extended leave and someone needs to keep a roof over DCs. Thankfully, DH was always very supportive of my career, so as long as I'm working we'll be OK.