DH's cancer progression - DH has died [title edited at request of OP]

[Chasingsquirrels]

DH was diagnosed with cancer of the oesophagus with liver secondaries last sping.
He was HER2 positive and had initial chemo then continuing herceptin.
It was very rocky post initial diagnosis - his throat closed up completely and he was hospitalised following a failed attempt to fit a feeding tube, was fed through a PICC line for a week and then they managed to fit a stent.
He coped well with the chemo and the results were quite positive with the liver nets reducing quite significantly and being held by the herceptin.
In the autumn he has a scan following a period of sickness and the main tumour had grown. He had a second stent fitted and then had radiotherapy.
He seemed to be recovering in January but then had a further period of sickness and another scan 10 days ago showed the liver mets have grown and tumour nodules in his lungs.
The consultant said 3-6 months at this stage, with the possibility of second line chemo which if it works could add a few months to that.
DH's general health has gone downhill rapidly the last few weeks. He is very tired, but unable to sleep for more than an hour at a time, has severe pain episodes and underlying general pain, plus tinnitus from the chemo. He has lost a lot of weight.

I've made the decision to take a leave of absence from work, and have been spending the last few days handing things over.
I feel so conflicted about it, he is my direct line manager and to a large extent I've been doing part of his job as well to enable him to keep working which he wanted to do. I'm utterly exhausted and just can't do it anymore.
He has also accepted that he has to stop now.
I don't want to just give up, but I feel I have to spend thus time with him.

I have no idea what my future holds.

It was fist bumps squirrel

If you want him home hopefully the hospice and Macmillan can support that?

Big love to you

👩🏻‍💻

Yes we should be able to sort getting him home - in some ways harder because it puts me in charge of his care, food etc but in other ways easier - logistically, not having to be in two places at once, his own things around him etc.
It is easy not having to think about meals etc for him though, I am so NOT interested in food, and am very fussy with what I eat (which I hate, but I actively don't like so many foods) and he loves food and eats everything. He used to say to me when we were getting up what we should have for tea, and at 8am I don't want to think about dinner, or even lunch! And now I have to think about what he will eat all the time.

Hopefully we can get the beginning of a care package in place tomorrow to at least get a hospital bed at home, which should help with his night-time sleep, and then home on Tuesday if that's in place.
This current stay was only a short term see what they can do to try an enable him to manage some of his symptoms a bit better.
Mainly it's just that he has given up I think, he has been so positive all the way through, taking the view that he would be the one that beat the odds, with the various treatments keeping the spread of the cancer under control, and to an extent carrying on as much as possible as if he wasn't ill. With the new spread of the cancer he's accepted that won't happen, and it seems like he just wants it over with. We've just had a bit of a chat about that and he seems to agree, he says he's so tired and everything is so hard and I can totally understand that because he is so worn out. But it's so hard because I just want to hold onto the best of him that I can.
He isn't at all interested in the 2nd line palliative chemo.

@Somerville - don't apologise for not posting.

He's so lucky to have you loving him. That's so precious. Thinking of you.

It's just so ... scary. X

Hi chasing hoping the bed turned up today and your DH manages to get home tomorrow xx

Thanks all

DH took a zopiclone sleeping tablet last night, and while he said he slept better (although not through the night) he was totally and utterly wiped out today - like jetlag he said - and just couldn't stay awake. He pretty much slept until 3pm and off most of the afternoon & evening, although less wiped out by that point. He's had zopiclone before and had the same effects, so says he isn't taking it again.
He said last night he was coming home today regardless of having the bed sorted, but given how wiped out he was the doctors suggested he stay another night & come home tomorrow - he managed to stay awake for their 10 minute round and tbh I think he just agreed so they would go away and he could go back to sleep! But I think that's best.
I saw the OT team and they've got the initial care package sorted, so bed, air support mattress, air cushion for sofa, shower seat & pager (which I told him I'd turn off if I get fed up of it ) being delivered tomorrow between 9am & 6pm. I'm just home and going to go now and measure a space in our bedroom & shift some furniture around to make sure the bed will fit, or do the same in the playroom or dining room if it won't. Then my parents are going to tag team to be here tomorrow to take the delivery.

Had both boys cuddled up in bed with me when we went up last night, then ds1 said he was going to bed and ds2 having been told he had to lie still & be quiet decided his hammock was a better bet and he departed as well. I'd taken them both in to see DH for an hour in the evening and we talked about things on the way home, so it's sinking in for them now as well. They are both worried about me and how sad I am. I said to Ds2 that's it's natural that I'm sad, and it would be weird if I wasn't but that he could talk to me about things, and it didn't make me sadder because I couldn't be, and if I cry it's just my sadness coming out and it's not because he's talking about it. But that they can talk to their dad as well if they find that easier because he doesn't have the emotional involvement and it might be easier for them.

Right, furniture won't move itself.

You are all lovely people and I appreciate every single message posted.

It's very dusty underneath beds and behind furniture that is never moved! Have got vacumn and duster now. But I think the space will work.
Shouldn't take me too long to sort.

That's good news Chasing. Sleep well my lovely xx

DH home, he didn't sleep great last night having spent all of yesterday zonked out and asleep from the sleeping tablets. So still quite worn out today.
Adjustable bed etc all delivered and set up. Just fits okay in our bedroom, everything is a bit pushed up against walls, but it's fine and he wanted it upstairs while he can. The OT said if we want it downstairs later just call and the delivery service come and sort it the next day - but he'd have to be able to move from one to the other himself. So maybe later it will go downstairs.

I hope your DH has a good night tonight, Chasing.
And that you do, too.

It's not just me being overly sensitive is it?

Visitor: "how are you?"
Dh: "pretty shit really" (total understatement, just existing is so hard for him, and getting harder, and won't get better),
Visitor: "oh well, life goes on"

Umm well yeah, unless you are terminally ill, only expected to get worse and have recently been told it's probably only a matter of weeks.

FFS

Just wow at what your visitor said, absolutely not over sensitive at all

He said it again to me when he left Five.
I understand people don't know what to say, and I understand it might be one of his stock phrases, but .... just THINK!

DH is, wasting away I suppose.
I asked earlier if he could just stop, would he. As I expected he said yes.

It's so hard, and is this the easy bit? I'm assuming it will be far worse after he dies.

Is it friend or relative?

It is hard, very hard and I can't say whether this is the easy bit, I suspect it isn't but it will be a different kind of hard after.

Oh squirrels.
Some people just don't hear what they say.

My first one for a very good reason I'm sorry you had to experience that. I hope they become aware of what a nitwit they were, and suitably chasten themselves

I'm really sorry to hear your thread op.
and for you xx

One of DH's clients/friends. I know it was not thinking, I know.

Sending you my love and support. I'm just sorry I am unable to offer anything else.

I helped to nurse a close-friend with bowel cancer a couple of years ago and I cannot put into words just how fantastic the staff at the hospice were - both in terms of looking after him and also me (and his parents) and helping to give respite care for him when we needed a break - also helped us to realised that it is a healthy and important thing to do sometimes, even if just for a couple of hours. I hope they can help to relieve a little of the pressure you are under.

Thanks everyone. And I do appreciate the friend coming round, anyway..

DH has just slept all day, his sister brought his mum round earlier but he couldn't stay awake for them so they didn't stay long.
My mum came round with chicken & leek pie and scones. I love my mum.

Hospital rang for DH to go in for a scan, I said tomorrow early afternoon but when DH woke up he said he won't be going. I'll see how he is in the morning. It's to check current progression and see if 2nd line chemo is still a possibility, but I don't think so.

I don't want him to die, but he will.
But I don't want him to have to live like this either, it's so so shit.

Having basically slept all day, and being uncomfortable and achy, DH is a bit better this evening.
Not sure whether he'll go for the scan tomorrow though.
GP said she'd do a home visit, so if we do go for the scan I'll need to call the surgery and let them know.

I'm so glad your DH is back home, where he belongs with you, Chasing.

There comes a point when pursuing medical stuff is counterproductive, for many, and it is very wise of him to think about whether the scan is worth the effort.

Sorry a friend was so insensitive. Yes it's hard for people to know what to say, so they sometimes revert to banalities, but 'life goes on' - fucks sake. Your mum bringing round for though, now thats love and support. Hope you managed to eat a bit.

Is this the easy bit?
No, the stage you're at now isn't easy at all. I didn't find it easier or harder than what came after, really - just different.
The only thing possible is to take it all a day at a time. Or an hour - or minute - at a time on the really bad days. But you know this already.

Scan cancelled. He says he just doesn't feel up to it.
I think if he'd gone for the 2nd line chemo a month or so ago, things would be different. But he didn't feel well enough then and things have gone downhill so much in the last month.

Yes am eating fine, I lost weight in 2015 doing 5:2 and logging calories on MFP l which I continued to maintain - it's just like second nature now. I don't want to put the weight back on, but neither do I want to lose any more. I'm also making meals for DH & my boys, which puts you in a routine of food - it would be much harder to motivate if it was just for myself.

I'm mainly sleeping okay too, a bit disturbed by DH in the nights, but getting enough hours albeit slightly broken.

Am holding friends at bay as just want to be with DH now, so turning down offers of coffee etc but saying "not now but be there for me later please". I hope they understand that - I'm sure they do.

Still thinking of you, Chasing.