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.

Thinking of you and your dh and sending you love and sympathy. I lost my darling dad to lung cancer last autumn and what you have described really resonates with our experience too.

I haven't got any answers or any advice as such. The one thing that has comforted me is knowing that there was nothing left unsaid and no regrets for either my mum or me. your love for your husband shines through your posts too.

Thank you, again, to everyone who has posted in this thread.
It's helping me to put my thoughts down, and it's also helping to read replies - both from those that have been there and those that just send good wishes.

I just found this thread. I'm so, so sorry chasingsquirrels. You sound like an incredibly caring, brave and giving wife. I just wanted to send my love and sympathy to you and your family.

Chasing, this thread could have been me 5 years ago. Your husband came home the day after mine came home 5 years apart. It's the wondering if you're doing the right thing that is difficult. My husband couldn't walk at all as he had a brain tumour.

It's so sad watching this thread. Can I suggest you save it because all the lovely things people say will comfort you down the line and when you wonder if you did the right thing and doubt yourself you will realise you did do the right thing.

As to the work colleague and life will go on comment. F**k that. My brother in law visited my husband (his brother) in the hospice 2 weeks before he died and came back to my house and said he looked "chirpy" I refrained from punching him. You are allowed to be rude at times like this.

One of my work colleagues is terminally ill at the moment and I am expecting a call over the weekend.

You are doing your very best. Look after yourself and remember your children will deal with this in a very different way to you as they are children and sometimes they may say things that are out of character.
Just keep talking and keep the lines of communication open. For boys I found the car a great place.

Sending you an unmumsnetty hug for what you are going through

No wise or useful words lass, just wanted to send you support and you're in our thoughts.

Such a bad week - DH has been totally worn out and utterly exhausted and in various degrees of pain all week. The phrase about not keeping an animal like this ring so close to home.
And then, today, he's had a relatively good day, slept okayish last night, napped in bed most of the morning then got up, had a shower and came downstairs.
His sister & husband came over for a couple of hours this afternoon and we played cards and, well, it gives you something to cling to.

The GP did a home visit yesterday afternoon and prescribed some slow release morphine capsules (10mg over 12 hours so not a massive amount, he has probably been having 10mg 2 or 3 times a day plus paracetamol 4 times a day) to try and keep on top of his general all over body aches. He took one about 7pm last night, then a couple of paracetamol and a dose of oramorph through the night, some of which I think he takes to try and sleep. Then nothing until a paracetamol late afternoon. He says he hasn't hurt as much, so I think he's going to try the slow release morphine just nightly rather than twice daily.

If the scan had been today I think he'd have gone, we'll see how he is on Monday.

Sounds like a good day, shitty cancer

A better day, which is good lass.

I hope this is the hardest thing I'll ever go through in my life, because I sure as hell don't want to go through anything harder.

DH had awful tinnitus for most of yesterday, which is just horrible because there is nothing he van take or do which stops it, and it is so debilitating for him.

Tossed & turned most of the night, then slept most of the morning. Got up and had a shower and came downstairs around midday and now resting on the sofa.

GP just called and is going to pop round again later (she is only Monday, Thursday & Friday at our surgery).

DH says he thinks not to the scan.

Ds2 has gone on his year 6 residential today, he's worried about my sadness. He's kept saying he will miss me - he won't, he'll have great fun and has been away from me lots (with his dad 2 nights a week + half holidays, overnights at grandparents & friends, cubs & scouts camps etc), but that's how his worry about me is showing.
I had a chat with his head teacher this morning and she said he'd spoke to her a bit on Friday about things and how mainly he was worried about me.

I want to rant at the world.

So sorry *Chasing

You're in my thoughts a lot.

for you and your lovely husband.

Hope today is one of the better days - one day at a time.

Thinking of you and your family

Hi Chasing. Big hugs xx. I'm sorry I muddled up the threads, you're right of course, it wasn't WoollyHugs, it was another thread, but it's definitely you. I'm crap with remembering which thread, but not which person 😊 (I know Five, on here, as well).

I'm glad you were able to have a nice afternoon with your DH's brother & wife. Bitter sweet isn't it xx

I really really feel for you with DH refusing 2nd line PCC. My Grandad [ Grandad always makes it seem like it was 'the right order of things/to be expected' etc. But until he got cancer he was a big, strong, active man, still very full of life]. I was nursing him. He got to the stage where he refused any more treatment.. I was hurt, angry, sad...I was young (early 20's) and I cried and tried to talk him into changing his mind. We talked and I just had to accept his POV. It wasn't until I was older & more mature that I could really understand both how he felt & how selfish I'd been. However, even knowing that, if I was in your position now I'd still be as torn as you are. You just want to cling onto every opportunity to have every possible minute with them.

As for your DH's friend. FFS. Yes it's hard to know what to say. Yes it's easy to say something insensitive. But fecking hell, there are just some things that any idiot can filter out. That is one of them.

Rant away my lovely, use as many swear words as you can muster, we don't have delicate ears!

I too hope this is the hardest thing you ever have to endure. It's hard beyond words 💐

Oh thank you all for posting.

Chipping - I totally understand why DH doesn't want the 2nd line chemo, we've talked it through and I've explained how I feel but also that I understand how he feels. But yes it's very difficult to fully accept, even now when I doubt he'd be strong enough for it anyway, a part of me feels if he'd just try it - it might fight off the cancer enough for him to have a reasonable summer. I think it could give him some better quality of life time, for a while. I'm pretty sure he's so consumed with how shit everything is (and it is) that he just wants it all to stop now, and that he can't face move treatment.

My mum cane over yesterday and we did a bit of gardening, oh and she's just arrived now.

xx

Just caught up with your thread. I'm so sorry to hear that your husband is so poorly. I think you are being incredibly brave and strong. I'm sure you don't feel like that and you are just doing what you have to do to get through but it does come across like that.
My husband had oesophageal cancer. He is currently in remission and I realise how lucky we are. But everything I ever read about it reminds me of what an awful cancer it is.
Thinking of you and your DH x

@Findingthissohard thanks for your post. Did your DH have the cancer removed? Amazing to be in remission. DH already had secondaries when he was diagnosed.

Having the bed moved downstairs tomorrow as getting upstairs is just too much for DH now. Well hopefully, he didn't actually get up today and he obviously needs to be able to get himself downstairs as they'll only move the bed not him. The hospice OT team had said if we needed it moving it could be done the next day, so I called to be told - next Thursday 23rd okay? Umm no. Called the OT team and they've got it sorted.

DH generally going downhill daily, GP called round today (DH's GP on holiday so a different one - who we'd actually seen last Wed and is my GP but I rarely need to go) but nothing they can do really. He said a matter of weeks, probably not days yet. Talked to me about what I need to do when he does die (who to call etc) and how in the last few hours he might stop breathing then restart a few times, sort of breath holding.

DH has been very unwell this afternoon, constipation which then makes him sick.

I got out and had a short walk with a friend this morning then she came in for coffee. Then my mum came round late afternoon. dc2 was back from his yr 6 residential and I ended up being upstairs with DH most of the time so my mum was with dc2. ExH just picked Dcs up, they are home tomorrow evening.
Dc2 said he'd wrote his diary on one day while I was away and did I want to read it - he'd written about being worried about DH and how things were at home and that he'd cried .

I'm glad the OT sorted the more timely bed moving for DH. Have they been to do it yet? Did DH cope OK getting downstairs?

I'm so sorry that DH is going downhill daily, it's so very, very difficult to see xx

Does DH want to stay at home? We have had various experiences with staying at home & going into a hospice. I cannot fault the three hospices I sadly got to know all too well. They made us feel so welcome & cared for and were incredible with the ill person. They were able to make the physical care less difficult and painful than we could at home. They let us do as much or as little of the care that we wanted to & pretty much anything we wanted to do was fine. It was so close to actually being at home. But one of my Grandads & an Aunty stayed with me & that worked fine too.

Getting the balance right with the bowels is so, so difficult. I hope you can find a good balance for DH.

DC2 sounds like such a lovely kid, poor lad x. Life can be so bloody unfair. Is your Ex good with them about this? It can't be easy for him either, knowing how to handle it & what to say.

Your Mum sounds incredibly lovely - you're lucky to have each other 💐

I'm glad you got out for a bit today & saw your friend. It's good to get a bit of headspace & fresh air. Big hugs my lovely. One foot in front of the other xx

Thank you, please excuse me not answering your questions xx I've answered in my head but just can't cope with typing it - but I appreciate you asking.

He's dying. I don't know how long but we are towards the end now.

Hospice @ home are sending someone out tonight, and they'll look after him 10pm - 7am so I can sleep.

I love him so very much.

Oh chasing sending lots of love to you xxxxx

Holding your hand, chasing, and lighting a candle for you and your dh. Hope you can sleep well tonight. HUge hugs.

Hope you do manage to sleep as it will help you tomorrow. Thinking of you.

I'm so sorry Chasing. You poor thing.

Hospice at home are wonderful. I found their presence so reassuring in my mum's last days.

Wishing you a good sleep and I hope your DH has a peaceful night.

Thinking of you and your DH Chasing. I hope you get some sleep.

I am thinking of you and your DH too, Chasing. I went through a very similar experience 4 years ago when DH had cancer and was dying. Stay strong, it is truly rotten