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.

Love the making of the birthday cake just for eating. That's the kind of person I want to be because it made you and the boys feel good, and is making all of us smile too (and we didn't even get to eat it!) - yes, enviably bonkers.

So good to hear that your visit to work was a relief in some ways. That's the first time done. Sounds like a really productive day.

Love your mum - birthday cake for eating why not. Glad you have lots of support in real life as well as on here. My DC are 14 and 12 and (like Rio said too) I worry most about my 14 year old - it's just a difficult time for them anyway without all these extra emotions to contend with. Have you heard of something called creative therapy?

Struggling to get going this morning. Have things I need to get done and no inclination to do them.

Am pissed off that the probate changes will likely mean much higher fees but think it impossible that we'd get it through in time, although at the moment no one even knows exactly what's going to happen. Changes from date of death would be much fairer. We do probate at work (I don't) and spoke to someone about it yesterday.

Then so many other things to get sorted.
I did the "tell us once" government thing this morning, put in a claim for tax credits and need to do the bereavement service - although I don't think I'll get anything.
They are just the easy bits.

I think they did the cake to show how much they love you and your boys

The cake, you're mum obviously wanted to try to cheer you up so she made her special cake! That is so lovely....

Met with the general manager of the hotel where we are going after the crematorium this morning, asked John's sister to meet me there - the only funeral I remember going to is my grandma's when I was 16. I have no idea what should happen.
Hotel manager was a contact of John's and had been to see him in the hospice a couple of weeks before he died, and I've met him a number of times. When I started seeing John he was renting a cottage just down the road from the hotel and we often used to go there for a bar snack when I stayed over, and we've had work breakfast seminars there for years. We will be using the conference area and it was so hard walking in there - and remembering the last time I was there and just "seeing" John there.

Then went to see John's body at the undertakers.

Hugs chasing, sounds like a tough day. x

Did you get any comfort from seeing John today?

Also, have you thought about asking MNHQ to move your thread to Relationships? Just a thought, as you're no longer dealing with a life limiting illness but with a different chapter in your life.

(Sorry if that suggestion is unhelpful or clumsily worded)

Oh squirrels. What a massively emotional morning you had. I hope you've had some time to process all of that this afternoon. Take care of yourself my dear.

You did well today. You sound so strong and well supported and it seems like you are surrounded by people who loved John. The way you write about him brings a tear to my eye. I expect he would be (is?) incredibly proud of you right now. Be kind to yourself

My mum arrived as I was typing so I just pressed post and have been busy since.
After I saw his body I went to Tesco on the way home and was very sad driving there and walking round so called my mum and asked her to come over for lunch.
Then we weeded the garden for a bit the after she went I spent the best part of another 2 hours weeding the drive.

Then Easter Egg bingo at school - I won and ds1 (who never wins) won 2 and shared with ds2.
Left early to drop ds2 at judo and went to a friends with ds1 for quick pizza. Unfortunately due to communication cockup they didn't think we were coming so we just had a chat and cooked pizza for ourselves when we got home after picking ds2 up.

Had a tiny rose plant off a client delivered this afternoon, so lovely. Then a card though the door from another florist when we got home this evening and the bloke across the road came over with them (from another client) before we were even though the door - which is lovely as the arrangements we received last week are all starting to die off.

Seeing his body was weird, it just wasn't John (obviously it was his body). The undertaker didn't collect his body for a few hours after he died and I sat with him a few times and it was still John. But today his body had no John-ness left. And that was okay, very final and maybe that was closure. It wasn't John it was just remains and now those remains can be (is there a nicer way to say "disposed of"?).

So a sad day, I cried quite a bit at lunch time. And then some happier bits.

(Would 'Relationships' be the right place? Cos it isn't any more. Or 'Bereavement'? I don't know.)

Stick here chasing if this is where yu are comfortable.

I remember seeing my friends DM last year after she died and it wasn't her, it wasn't the beautiful and vibrant lovely lady that I had I known for nearly 30 years, and when my grandfather died I didn't want to see him as o wanted to remember hi as I last saw him and I still do nearly 3@ years on

A few people have said that about not wanting to remember them like that. But I don't think I will. I have that memory of him but I don't think it will override my other memories.

Sounds like a busy day with lovely bits and difficult bits. You sound like you are doing amazingly. You and John are in my thoughts. Take care and hope you get a good night sleep.

Sorry, squirrels, I sounded like the bloody thread police back there

Noooo don't worry

What an emotional day you've had Chasing.

I'm glad for you that you went to see John. I personally think it helps to see that the essence of your loved one has moved on, and that what is left is a part of them that they don't need any more. Like you say, it's a form of closure. And IME you don't remember them that way at all.

Take care of yourself, you sound like you are doing so well

As I said on another thread, Chasing, there is no right or wrong in all this. Just do what feels right for you, and that's OK.

I'd like to think that John has taken himself off to be with you for the next stages. That's OK for me, may not be OK for you. That's OK too.

Do hope you can sleep well.

that's a really busy and emotional day for you all.

At some point, I think it will be really eye opening for you to reread this thread, to see what these hours and days were like.How you kept going, all the things big and small, the people you saw - such a visual of the old and new normal fusing before your eyes.

As to the funeral, it is something you can do in whatever way you want - no right or wrong way. Think of John, and how you want to celebrate him and the life he led. Take your time. It has to feel right. It also doesn't have to be now - could be much later, when you are all ready.

I'd like to think that to - but actually I just think he'd gone and that that. Which is somewhat crap.

I'm also kinda feeling there was me and the boys before, and me and the boys now - and wtf happened in between and where has it gone.

John was such a kind man, to nearly everyone, and just adored me and I've just felt so cared for and now I haven't got that. I've got the memories of it, bit I don't have the actuality of it any more.

Sleep does not seem to be a problem

Waiting for the hospital bed to be collected today, between 9am & 4pm - so hoping they will turn up soon.
It's in the playroom, which is attached to the lounge with double doors that are mostly open in the day, plus half of the playroom corner sofa is in the lounge to make space for the bed, and I just want to be able to sort the furniture out and get it all back to normal and want the bloody bed gone.

And it's gone. Now I can get the room back to normal, and actually tidy it up and sort it out a bit - I got a corner sofa to update it to more of a den from a playroom a couple of months ago and didn't sort everything out properly at the time - just dumped stuff in the big storage unit. Just need some motivation now.

How do you feel about the bed being gone now?

Life is relentless in the changes and even and especially death seems to bring its own timetable in the decisions and organisation that comes after.

I'm so sorry again. I have had some close bereavements around me in last few years and know exactly what you mean when you say they are gone and that is that. But I have found the feeling that suddenly they are very near again to inexplicably run alongside that. I know that makes no sense, but that is what I have found!!

I hope this evening brings comfort and rest for you.

Much better that the hospital bed is gone.
We'd only had it a couple of weeks so its not like it became "John's bed", and it was in the way - I'd had it moved downstairs a few days before he died and had to rearrange things to do so.
Having said that I had to rearrange the bedroom to fit it in there originally and it's 2 weeks since they moved it downstairs and I've done nothing about sorting my bedroom out and still have my bed pushed into the corner and a big space where the hospital bed was.

Gosh I just typed my bedroom (and in some ways I get that - I've lived here for 16 years, John moved in with us a bit more than 4 years ago) and my bed (it's our bed, John brought it shortly after we got together - and while he had needed to buy a bed anyway as he'd just moved into an unfurnished cottage I can remember him saying he'd brought it for us. Then when he moved in he brought it with him).

Went to see old friends of John's this evening, I knew them and we'd all meet occasionally but he'd known them for years. And it was lovely. And I've just come home to an empty house ad my boys are with their dad. And that's okay too. I'll go to bed soon.

Chasing I've just read the thread with a huge lump in my throat. I am so sorry for your loss, and more than slightly envious that your marriage to John was such a lovely one. Oh that we should all feel so loved. Best wishes to you and your family and strength for the times ahead xx