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.

, Chasing

I'm sorry things are so hard Chasing.
Thinking of you and your DH

I spoke to the GP about Macmillian and she said all palliative care now comes under the local hospice - so it wouldn't be a separate referral.
So I think things are in place, it's just that he's gone downhill a lot over the weekend, but with the private / NHS split it's all felt very disjointed.
And ... maybe it isn't time sensitive, but when you are in the middle of things it certainly feels like it is.
Like the majority of people, I've never supported someone who is terminally ill before - so unsurprisingly don't know what to expect.

Now at the private hospital waiting. They'd said they could just do the drip, but when we got here as he'd been sick over the weekend they said they needed to redo bloods to check correct dosage re kidney function, do waiting for that - which should be back now - before they do the drip, which should only be a 15-20 minute thing. But starting to wonder if there is a problem with bloods now. Will go and investigate.

chasing I am so sorry, I have no words but you and your DH are in my thoughts

Thinking of you and your husband as well.

After waiting three hours for the blood results to come back (problems with the machine) his calcium levels were higher than last week and problems with other levels and they were worried about his kidneys coping with the drip. So 2 x 6hr bags of fluids going in overnight to hopefully stabilise things a bit, bloods again in the morning and hopefully the drip, or another bag of fluid then the drip. Should be okay to come home tomorrow,
I had to go home to get him an overnight bag, because having been told it was a 20 minute procedure and they would be able to do it straight away and wouldn't need to take bloods etc we weren't prepared for him being admitted.
I just hate leaving him at hospitals, even thought he needs it.

The consultant came over after his hospital clinic and talked through things a bit, we were meant to be seeing him on Wednesday but he said don't bother with that given we'd seen him tonight and the hospice are coming on Thursday, and see him the following Wednesday instead - so I'll ring the clinic about that tomorrow to make sure we get put on the list for next Wed.
Said should start feeling better from the drip after about 24 hours, but should feel slightly better in the morning just from the fluids - so will have to see.

Thank you to everyone who has posted. I really do appreciate it.

Sleep ...

Hope you slept okay.

Leaving them in hospital is the worst. I agree. Hope he gets out today.

Glad he's being well taken care of and that unnecessary appointments have been cancelled.

Chasing, just to say that there are many of us reading this thread and thinking of you and your family. We don't often post as we don't have the words or experience to share.
But just to let you know we are here and sending prayers / positive vibes.

Thanks, I know what you mean about not knowing what to say.

That was worst night sleep I've had in a while, I hate going to sleep on my own do stay up stupid late reading.

He is now having the IV drip we came in for yesterday and said he feels marginally better for the fluids.
So will see how today pans out.

Another one chiming in to say that I'm reading all your posts and wishing you both strength, peace and love.

Got home mid afternoon on Tuesday & DH went to bed. Got up about 5pm for the evening then bed. Had a very severe lower stomach pain episode in the early hours but slept most of the night apart from that. Still pretty sleepy yesterday and a bit disorientated but slightly less. Then slept badly last night but said he feels better than he had been this morning, but tired and asleep again now.

My mum came round after lunch for a couple of hours yesterday with cake, then his Sis & H popped round late afternoon before staying the night with MIL.

Have the hospice nurse coming in a while then his Sis & H said they'd call round before they go home - they live about an hour away but elderly MIL is 10 mins from us and SIL has been coming over to see her more since DH is now unable to - he used to call in and see her most days just to check she was okay etc.

I have been thinking of you and your DH chasing over the past couple of days, hoping the sleep helps your DH and you can rest to0, how are your DC's holding up?

@FiveGoMadInDorset thanks - and I of you and your DH .
My kids seem okay, a bit more cuddly than normal and worried about me. But while they are close to DH he isn't their dad (who is around and they have a good relationship with) so I guess that makes it easier for them.
I worry about the impact on them, but I think they will be fine - they have plenty of support around them.

Tough day today.
The IV drip seems to have helped a bit - back to where he was a week ago really so he isn't well but he isnt further downhill, he had now got slightly fluey symptoms as side effect of drip but that should pass quickly.

Hospice nurse came out to see him this morning and after discussions about lack of general improvement is going to arrange an admission to try and get his symptoms more under control and improve his energy, she thinks he will be looking at spending 5-7 days + there, probably by about middle next week.

She was quite clear that it is for symptom management not EOL admittance, but it's another step down that road & very difficult to deal with, I don't want him to go - but if they can improve things it will be worthwhile.

DH said it will also give me a break, but I'll want to be with him as much as I can and the logistics of it will in reality make things more difficult to juggle not give me a break. I've been getting up for a hour with the kids then going back to bed when they leave for school, but I'll be wanting to go straight over to see him as soon as they go. Will definitely have to make sure I go to bed and go to sleep!
Then having to be around after school or sort out people to look after them, and needing to be around to spend some time with them - which with DH at home isn't a problem as everything is in the same place.
Hospice is about 30 mins away, in good traffic.

This sounds so hard, Chasing. I totally understand about the logistics. Can you call in favours from family - one person organise a rota for you, to take the kids to school or have them after school on alternate days or something? Can someone sleep over with them some nights so you can stay at the hospice (if they allow that at your one)?

You sound sensible so are probably doing this already, but just in case not; every time someone says 'what can I do?' give them a job.

If you haven't already then you might want to phone the nurse when he's not around to let her know you want him at home as much as is medically possible, and for some reassurance on the admission.

Thanks Somerville.

She did mention I can stay over, assuming he gets a bed next week I'm going to ask the boys dad to have them all next weekend rather than just Fri/Sat. He also has them Monday nights anyway. So that gives a bit of breathing space.
My parents will always come over, and both boys can be "farmed out" after school - well Ds1 is 14 so doesn't need farming out, and usually I'd happily leave him home on his own but in the circumstances I want to ensure he isn't home alone too much.
It's the trying to be all things to all people. I need (for me) to spend this time with DH, but my kids need some of me - and while I can and will sort out alternatives for them I do need to be there for them myself some of the time.

And yeah I'm pretty sensible and can be all practical about things - and then I just get that almost heartstopping hit of grief and anguish when I let myself "think" about it.

She was reassuring about the admission, and if they can help his current symptom management and improve things a bit it will be fantastic - but it doesn't stop your mind going elsewhere with it all.

Evening Chasing, I totally get where you are coming from regarding the hospice, although they are great places there is always the worry at the back of your mind that once in your loved one will never come out again

Yeah, and seeing his recent decline doesn't help those thoughts.

Ah, that's good that you can be with him for 4 days solidly over the weekend.

I remember feeling so torn like that about who needed me most. That guilt doesnt help, and too often can lead to looking after everyone but oneself, and getting ill.

On a practical level I tried to have one outing with each of my DC each week, so that they had some 1:1 time with me. Usually something simple like going to a cafe so we could chat. Just an idea.

I used to try to make myself think about it, in vain hope that it would make it easier when it happened. I don't think it did and some days I look back and regret that I didn't manage to live in the moment a bit more. Then again, other days I look back and think I'd of alright to get through it at all.
I don't know what my point is except that perhaps there is no right way of going through all this.

I felt like that last summer, feeling I was wasting the potential good times we had left, after the initial diagnosis and hospital stay I went through an initial grieving period and felt I had to "get over it" so I could enjoy what we had not grieve for it while he was still there. But you can't control how you feel and I guess I just had to go through that.

I completely get the thinking about it so it doesn't hurt so much after thought, but I know it will and that conditioning myself to it now won't stop or lessen what I'm going to feel later - so as much as possible I'm just not thinking about it, I'm not in denial - I know he is dying - but he hasn't yet and I'll go through that later not now.
And @Somerville I think you are amazing, giving of your time, thoughts and feelings to help others who are going down a road you have already walked. It can't be easy and I only hope I can do the same in the future.

You are reading my mind chasing the time that you somerville put in to answering questions, giving ideas and thoughts on those of us who are treading the path that y have gone before cant be easy for you and I just want to give my heartfelt thanks for the support that you give

No need for thanks; it honestly helps me a bit -probably much more than any advice or sympathy I can throw out help anyone else. (Not sure how to define exactly how it helps me - partly it's just the opportunity to reflect on that period in my own life.

Hope both your DH's are as settled as possible this weekend.

Hi chasing just thinking about you today and the comment you made about feeling that you were wasting time last summer while trying to do what seems like an impossible feat of trying to find some days between DH's chemo DD's SAT's and her week residential and before the last chemo session as don't know what the plans are, it's challenging.

I hope that your DH had as comfortable weekend as possible

@FiveGoMadInDorset, my feelings about wasting time were to do with my grieving period at a point where DH seemed reasonably well.

But I would say, given what you have posted about your DH, that if he is well enough to do things - grasp that with both hands and do them.

My DH coped reasonably with chemo but got more tired as it progressed. We didn't have a honeymoon - he was only out of the initial hospitalisation the week before our wedding, we didn't know until the day of the wedding whether he'd be well enough and after the ceremony and a quick drink we went home and he went back to bed.

Towards the end of his 2nd chemo cycle, a month after the ceremony, we had a garden party to celebrate our wedding. It was a lovely day and I'm so glad we managed it.

We'd been talking about going to Bruges for a few days, we kept talking about it as a possibility - if he felt okay towards the end of a chemo cycle, after chemo finished, when he felt better from the radiotherapy. In reality he wasn't well enough at any point to have done it, although we did do other much smaller things.

He's sleeping a lot now, the IV drip seems to have relieved the hypercalcemia symptoms and he's over the fluey aftereffects. His general health is probably declining rather than on a level though, and he has some quite severe pain episodes.
Just walking upstairs tires him and apart from medical appointments he hasn't left the house for weeks.

Moments to hold onto consist of pain free awake periods when we can sit together and cuddle gently and caress each others hands.

"Moments to hold onto" what a lovely way of putting it.

Hi squirrels, just read your thread after you kindly offered me support. I see that you have so many additional caring responsibilities than I have. You are doing so well.

I lost my mum to cancer 20 years ago. It doesn't get any easier for me. But I think I can sort of function under any circumstances. And I know I can cope and get through anything. This has given me strength now my other family members are sick.