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.

Your wedding is a precious memory to have.

In some ways I view our garden party a month later as more the wedding than the actual ceremony - DH has said he can remember very little about the day and can't remember saying his vows, which made me very sad. But then I know that he meant every word of them, it's just that he was still quite unwell and it's all a bit of a blur.

He had bloods done on Fri and the GP called his evening to say his calcium levels are back to normal but his haemoglobin is low, he has an appointment with the consultant at the cancer clinic tomorrow so maybe transfusion is in order. He had one last November when he sicked up blood and it definitely improved his health - so I'll push for that. It seems that low levels makes tinnitus worse, so if they can give him a unit, or two, it would hopefully make him feel a lot better.

I'm sorry for the loss if your mum heaateall... and now your friend, brother & dad - it's a lot to deal with.

That's good that his bloods are better. Hopefully they will be able to help with a transfusion.

It's all been so long coping with it for you. It must be a comfort that you do love each other so much even through everything.

DH went into the hospice today.
I'm going to sleep now, I want to post about today and don't want to at the same time - so sleep seems the best option.
I'm missing him being here, and hoping he will be home soon, and knowing that it won't be all that long until he will never be home again and that's just fucking shit .
I hope they can help improve his symptoms a bit, for a while, and 'not long' is longer than it currently feels.

Thank you everyone who has posted to me on this thread.

Hope you get some rest tonight

I'm so sorry and I wish you peace.

💐

@QODRestYeMerryGentlemen how do you do those different flowers? I see them on posts and wonder - but usually on threads where I don't want to detract from the support the OP needs - but this is my thread, so I'm asking!

The flowers are an emoji from an iPhone or iPad OP.

Just wanted to send you a hug really and to say that I am thinking of you.

I'm so sorry you're having to deal with this. and lots of love to you and your dh x

Yes it's from my iPhone

🍇

Not visible to everyone I think, just if you're on apple

🌼🌻🥀🌷🌸🌺🎍🍄☘️
And this is for you for luck 🍀

Ahhh, I'm usually on my phone (android). I'll have to have a look on my ipad.

Thanks for the replies & warm wishes everyone x

Oh there is all sorts, emoji heaven.
💐💐🌷🌷💐💐
I'm especially liking 🙈🙉🙊 oh and there's the 💩

I shall restrain myself!

Oh I do have on my phone as well, just different ones.

Dont restrain yourself . Any little bit of happiness helps.
Sending massive hugs to you and dh xxx

🤜🏻🤛🏻

That one is just showing as a rectangle with a diagonal cross QOD.

Am spending the day with DH at the hospice, he had a unit of blood yesterday and had started a course of steroids. The blood seems to have helped his headaches and hopefully they will do another unit on Monday.
He's sleeping quite a lot, but says he feels a bit better than he did.
They are talking about him coming home early next week, so will follow up on hospital bed etc

Left the hospice around 9pm and popped to Tesco on the way home, had some beans on toast and am now sitting in bed sobbing.
He was so sad this evening 😔 and I hate leaving him and I feel so bloody useless.

De-lurking to say I'm here, I'm so sorry, wish we could make it all better. Life's a fucking shit sometimes. You don't deserve this, DH doesn't deserve it either. So bloody unfair.

So sorry for what you are going through. There aren't enough words really :(

Very big unmumsnetty {{{{{{{{hugs}}}}}}}}

🌷🌷🌷🌷🌷

Hello my lovely, I didn't realise you had a thread here & didn't want to bring your situation onto the Woolly Hugs threads as that's probably a bit of an escape space.

They're talking about DH coming home next week, that's something good to focus on ((😊😊))

I don't have any wise words that will make this any easier & telling you not to think too far ahead is just hypocritical coming from me as I know I can't stop myself doing that. It's just 💩💩💩💩

But, try to get some sleep while you can, think of it as making yourself stronger for your DH. Again, I've got no advice as far as that's concerned because I'm a 💩 sleeper myself!

Basically I'm no fucking use to you, but I'm here xx

I just sobbed and sobbed last night, then messaged my SIL a bit and probably made her cry too.
Just messaged DH and he said he didn't sleep well.

I'm struggling to see much benefit to him being in the hospice ATM, he is self medication with pain relief, has had the blood transfusion which was going to happen anyway and is having a course of steroids which various specialists have mentioned for a while but not actually done anything about. So some things have happened, and the 24 hour medical availability has contributed to that. But they've talked about various things they can do with no specifics yet nothing really happens. Not helped by the fact that while it is 24/7, it is undoubtably less staffed at the weekend - a ward doctor but no consultant, the day services are all closed so the various professionals relating to that aren't there etc. They said on Friday about him going home over the weekend if he wanted to - and he only went in Thursday lunchtime.

I don't know if typing this helps or not, I do know that the posts made in reply - both long and short - DO help. So thank you everyone.
@ChippingInLovesWoollyHugs thank you for your post, not sure if you are confusing me with someone else (maybe Five, her DH is undergoing treatment) as I've never been on the Woolly Hugs thread. Regardless, your post helped and you are NOT fucking useless!

All respect to you, chasing, for holding it together for your DH and DC. Cancer is a bloody horror (it DM died of it) and there are few things more grim than seeing someone you love going through it.

Sorry for missing some updates Chasing this fell of my TiO and I've just had to come looking for it again.
I'm glad the transfusion helped him. Sorry you're missing out on time with him though.