How do you know when the end is near for a cancer patient?

[OrangePowder]

And how near?

He's past the timescale we were originally given and TBH until the last couple of weeks hasn't really seemed that ill. He's had a lot of pain, but seemed well in himself if that makes any sense.

Over the last few days, he's really reduced what he's eating. Still has a reasonable breakfast, but nothing else all day and is refusing even sips of drink. He says it makes him fee sick. It takes ages to get him to take the tablets. Asleep a lot and mostly just whimpering when he's awake.

I know this isn't the place to ask really, but his medical people seem to want to skirt around it. I know it's not good, but what might we be looking at?

@OrangePowder

It's really hard. I'm still trying to work. If I knew it was a matter of weeks or even months I'd take some time off, but I can't take years off. I'm going to have to support myself and DC after he's gone, I need to hang onto the job somehow.

So hard and yes, the not knowing and the trying to factor in work and trying not to neglect children is absolutely crushing — and all the time you're grieving, too. It's a complete nightmare.

The hospice nurse will be the best person to know. It sounds to me as if your husband is getting towards the end. Once a patient loses the ability to take fluids you are probably talking a week or two. It may be that the hospice will offer to take him at this stage to ensure that he has adequate pain relief. If you would like that, tell them.

My DH died at home from cancer 2 years ago. We had hospice nurses visiting 2x per day in the last two weeks. By the last two weeks he had stopped eating solid food and was only having meal replacement drinks (prescription) and juice/water through a straw. A week before he died he could no longer manage stairs even with assistance (no muscles, all wasted, very frail and thin) and had to move to a hospital bed downstairs. About 5 days before he died he was at the point where he had no strength, had to be helped from bed to toilet or sofa, and if he was sitting up and fell sideways he couldn't sit himself back up without help. On the day he died he lost his swallow reflex and couldn't even sip fluids through a straw without choking. He developed breathing difficulties about 6pm and died just before 10pm. Earlier that day he had still been able to talk and was even chatting in French with one of the nurses (who was French, DH was multi-lingual).
I wasn't expecting him to go downhill so quickly on that final evening but the nurses had predicted it would be less than a week.
I'm so sorry OP and can feel for exactly what you're going through with your DH. I am 2 years on and try to remember DH as he was in his prime and not as he was during those final weeks. Sending you all my best wishes.

My DH died in Jan, he'd been in a hospice fir a month over Christmas to get his pain under control. He walked out of the hospice on a Wednesday - (at this point they where saying few months) Once he was home he was actually 'ok' we did our delayed Xmas dinner at home on the Friday, Saturday he woke up confused and lethargic, by Sunday he was deteriorating fast and blue lighted to hospital. Fluids / food stopped on Monday as he slipped into a coma, syringe driver put on, we got him home on the Wednesday in a hospital bed and he died on the Friday without ever regaining consciousness. It's very very hard to put a timeline on. The end came much quicker than he or I ever expected.

Can you speak to the hospice / nurses / doctors without him there ?

It took dad about a week from refusing fluids (he had esophageal cancer so could not eat anything solid towards the end). He had a morphine syringe inserted on a Tuesday and died the following Sunday. On his last day he was fairly "out of it" but when we read a poem we had found from Mum (who had passed away 7 months before), that she had written about him 7 years previously on their 50th wedding anniversary, he smiled his huge smile and then took his last breath. It was and still is, a huge comfort to think that the last person he thought about was mum. Whether that's true or not we'll never know, of course.
If your work offers it ask for extended compassionate leave and enjoy the time left.
for you OP.

DH hasn't been out of the hospital bed since early Jan, but has been "himself" otherwise until very recently.

Hospice nurse offered to see if she could arrange a stay in Hospice for respite but, whilst she wouldn't give an estimate of how long, she doesn't think this is the end.

I'm on holiday this week anyway. Will have to see what next week brings.

Work have been amazing, but I don't know what I'm asking for. I don't want to take leave now and then not be able to when I need it more.

Having been there I would advise you to think about taking some time off now. Also agree with other posters that he may benefit from a syringe driver to help manage the pain. So so sorry that you're in this situation. Your poor husband too

I'm so sorry you're in this situation, I just wanted to send you love and support. I hope that your DH is comfortable and that you are being supported well by friends and family

Do speak to the palliative care team about a syring driver for pain meds to make him comfortable if he cant swallow.
DB had pancreatic cancer but it was too late by diagnosis as he was too frail to have surgical removal or chemo, except for 2 bile duct stents for helping with jaundice. He rallied several times and lasted 9 months from diagnosis before he deteriorated for the third time. His GP came round and told us the end was close and organised a 24hr syringe driver with pain and anti-anxiety meds. He was conscious and chatting briefly with me until about 2 hrs before he died when he became unconscious, then his breathing changed and he died very peacefully.

The nurse said she was going to "try" and get his meds switched to liquid form, but I'm not sure that's going to help him, especially if they taste foul. She said he's not advanced enough for intravenous pain relief. She's going to arrange anti depressants for him to see if relaxing helps.

You can ask the nurse or doctor. You can also ring MacMillan for support and they will also talk through with you what to expect.
A hospice nurse will have a rough idea of the timescale, and it is fine to be straightforward and ask.
I am so sorry you are going through this.

Sending hugs and it's so hard.

When my dear Dad was near the end his doctor told me and my sister to get a sick line from our own GPs in order to be there with him. That had never occurred to me. Like you, I was panicking about taking time off work. I rang my GP and explained and they did it there and then, no querying. I wouldn't normally encourage someone to get a sick line unless they themselves were sick but this seemed to be perfectly normal to the doctors. I got 2, two week sick lines (so 4 weeks in total) and my Dad passed away the third week.

Don't miss precious time with your DH worrying about work. You can never get this time back and whilst working pays the bills, it is just a job. I'd echo other posters to say take some annual leave now to be with your DH and children. If you need further time off I am sure your work will be understanding and if not then get signed off by your doctor.

I can't take annual leave, I work in school (but am off this week for HT). If I thought it was going to be 4 weeks or so I would take sick leave but it could be much longer. I can't be off sick indefinitely.

Ah ok, I understand. Sorry, was just a suggestion based on my experience. Sending hugs x

So sorry OP.

My DH had no clear signs, he actually had an increase in appetite the 24 hours beforehand and rallied quite a lot.

Then suddenly he just gave up.

Sending support x

Sorry to hear about this.

My dad died of lung cancer and a good friend of mine died of brain metastases recently. The two processes were completely different, partly b/o aggressive chemo vs. palliative treatment only, but also because it's a not a linear thing - you get sudden slumps and partial rallies rather than a steady decline. I guess that's why the doctors are being non-committal.

But if the person in your care is getting palliative treatment, maybe it helps to let you know that my friend in the same situation stopped eating about two weeks before her death. She spent the last few days of her life slipping away very gently, in and out of consciousness - or rather, it was very hard to know what she took in or didn't.

The actual death announced itself by increasing distances between breaths. The hospital called us; the nurses were experienced enough to read the signs. She died within 4 hours of the phone call.

If they aren't suggesting the syringe driver then they don't think it's imminent.

So sorry you're going through this 💐

Is there anyone, a good friend, who can be around to support you and talk things through?

When my parents were dying of terminal illnesses (one with cancer) I found it helpful to talk to good friends who were a little bit removed from the situation, they could assess the situation more clearly and give good advice about when to take time off work at the end.

My emotions and hope that it wasn't the end clouded my own judgement.

As others have said, the palliative care nurses gave excellent advice about what to expect, but obviously only speak to them out if earshot of your DH. (My dad said something insensitive when my mum was dying, which she reacted to ☹️).

I wish you strength and peace to you both at such a difficult time.

What do you and your DH think about a stay in a hospice for respite? My friend was in a wonderful hospice for the last two weeks of her life. They were as open and honest as she wanted them to be re timelines and they were constantly on hand to check meds were strong enough. The syringe driver is usually given in the last 7-10 days. I found the Macmillan site really useful for helping me recognise stages and prepare myself.

Sometimes the patient kind of chooses - we brought my brother home from active service on the GPs advice - my mum lived for another two weeks and they told him he had to go back. As soon as I got back from dropping him at the airport I noticed she’d changed and relaxed - she slept all the next day and died early the following morning. She didn’t want to die with her little boy there (even though he was 22). With my dad, we were estranged, but I made it home, we made our peace, and he died the following day. The hospice doctor said she knew he was waiting for me.

In both my parents cases it was a couple of days after they started refusing food and drink, and spent most of the time asleep.

What I would say is to try and be there if you can. Being with someone in their last hours is a privilege - to hold their hand, tell them you love them, and say goodbye. You will never look at life, anyone’s life, in the same way again. Do everything you can to get time off. I was with both my parents when they died and I would do it all again in a heartbeat.

OP, have you been open and transparent with your headteacher? Unfortunately we've had several staff members in this position over recent years and all of them were given the discretionary leave they needed. If you haven't asked, please do.

Ask for pain patches as they can easily be, put on .

We have a staff member at school on indefinite leave due to her husbands illness.

You need this time to support dh. Don’t worry about work. Get the gp to sign you off with stress if need be.

Mottling of the feet is a physical sign that the end is near.

A couple of weeks from not eating and drinking much to the end. Lots of sleeping. If his pain is bad he should be on a syringe driver and sedated. There is no need for him to be too aware.
Fidgeting and rallying in the last 48 hours is quite common.
Sorry you’re going through this