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.

Just wanted to say that I am thinking of you this evening. Your love for John shines through in your pictures. Sending you love

Morning chasing, you write so eloquently, and you sound surrounded by love

I've just had a chat to John and told him how much I love him and miss him.
One of our retired partners, who'd known both John & I for many years, said this a part of a longer email to me...
"and it's OK to "talk" with John in your head (best not do it out loud!), as you know what he would say in any given situation and it will likely be sensible and possibly funny".
And John did have a sense of humour.
The weekend he was dying, very ill and in pain, one of his friends (who has a bald palate, but longer hair from the sides) said to John at least he hadn't lost his hair, that he still had more than the friend did. John, who couldn't talk at this point - his voice just faded away in the last week and he could only whisper, replied "sell it to you!".
I miss him so much.

My half siblings mother still talks to her late husband, I think my mother may do but she doesn't admit to it

I still talk to DH1 LOADS. Out loud while in the garden or at the cemetery. I write to him in a diary. And in my head. I often started a sentence with 'as I was just telling DH1...' which to my kids and other family was totally natural - they're clearly used to my batshittedness. But when I returned to work it got me funny looks and I had to remember how to filter again.

John sounds very funny - and also very kind; not easy to expend energy on humour at that stage, and people who do, are doing so to reassure the people around them, I think.

I'm so sorry you've lost him.

A realisation I got slowly was that I miss DH1 so because I loved him so. The two are directly proportional, which means I wouldn't change anything about the depth of the loss... though not sure I would have realised that very early on with everything so raw.

I hope today treats you kindly.

I was messaging SIL last night and saying that the reason it hurts so much was because we'd loved each other so much, if I hadn't loved him I wouldn't care.

He could be funny, quite dry but he'd just come out with remarks that made you laugh.

And he was so very kind. So many people have been commenting on his kindness - in person and in cards and emails.

I don't know if I've already mentioned this, but I was talking to ds1 about relationships the other day and he was saying that John and I hardly ever argued (we didn't) and the only thing he'd ever heard us (me) getting annoyed about was when I felt John was spoiling his children. Ds1 said "if the only thing you can get cross with someone for is for how kind they are, that can't be a bad thing".

Ah, your DS is wise.

Kindness really seems to be the best skill to deal with unanswerable questions and problems in this life. I do really feel it is a skill as well as an instinct.

Seems you had the love of a very special being there chasing

Just feeling very very sad and having a cry, ds1 came down from having a shower and has just hugged and cuddled me - that's the wrong way round, that's what mum's do for their kids. Fuckity fuck.
Now watching would I lie to you with him then bed.

Have to disagree with you there, squirrels. Loving mums raise loving kids who provide hugs when needed. Then they grow up to be kind, loving adults - like John.

Chasing I always get hugs from my 8 year old boy, I'm honest with him and tell him if I'm feeling sad, we have big hugs with him doing the hugging. I like to think he'll grow up to be a loving companion to someone one day! Your son sounds like a lovely boy, he too will make someone a loving companion, just like John was to you. ❤️

I wish I had an ounce of your bravery. So sorry you are having to walk this vile journey. Your children giving you a cuddle when you are upset just shows they are able to respond to emotions, to me that says you have done a fantastic job of raising them. In years to come their partners will thank you!

Thank you - that cheered me up.
I just want to protect them, wrap them up and shut the hurt out.
But I can't, no more than I could protect John.
But what I can do for them, and what I did with John - and he did with me, is help them to live with it, to find enjoyment despite everything, and to carry on.
It's going to be bloody hard sometimes though! DS1 is 14, and while he is a lovely boy and I have no problems with him at all - he is still 14 and has had his moments, and 11yo DS2 has always been quite intense. And whenever I'd get wound up by them, John would quietly be there, making me see the lighter side, gently showing me their side without me realising, and accepting my pissed-off-ness, and loving me anyway.

I actually came on to wrote about my day - I've been into work to see everyone. But I'll do that later.

Hello Squirrels raising teenagers is not easy, but it sounds like John left you with really clear pictures of what he would say or do in any situation - you can call upon that when needed. Hopefully, it won't be for quite some time - they sound like really lovely boys. A reflection of you two lovely parents methinks.

Chasingsquirrels, I have been following this and am so sorry you lost your lovely husband.

I imagine you avoided watching Rio Ferdinand last night (his wife died a couple of years ago and the programme was about grieving.) One of the things they did (after hearing someone else say it) was to write a memory on a piece of paper, fold it and put it into a bottle/jar. It was such a lovely idea, particularly for the children, but I think for him, too. They were just tiny memories, but the girl who said she'd done it originally said that every one brought back really vivid memories years later. She'd lost her own mother when she was five, I think. I thought it seemed a really good idea and the children really enjoyed doing it as they focused (on TV at any rate) on happy memories.

for you and your family.

I did watch the Rio thing, I thought it was very well done. The thing that struck me was the older teens doing the group therapy stuff quite a number of years down the line - I'd just thought it would be immediate then fade.
The other thing was that two years down the line (although I think it was filmed last summer as there was one shot with a July 16 date on, so actually only just over a year) was that Rio appeared to not have really approached his own grief at all.

John wasn't my boys dad, although he'd been in their lives for just over 5 years and had lived with us for just over 4. So a fairly major part of their young lives.

My exH wrote a lovely message in the card he gave me about how he'd always thought John was a good role model for the boys.

Gosh you really didn't have long enough together.

Someone said on here about RF that he was very unfaithful - I wondered whether that would make it worse. It must be really hard to love someone and know you've been a shit and to grieve for them. In a good and honest relationship, the only regrets are that you didn't have the time, rather than you didn't treat them well.

I would think therapy could be needed at any time - even as an adult when you've lost your parent as a child. It doesn't mean those children had had continual therapy, just that there was a need long after the event.

I'm so glad your ex said that about your husband.

The Pastor who is going to do the funeral came round yesterday to run through things. I asked John's sister if she wanted to come over which was good. Then we had a chat after he left.
Then a client called, then I went over to see John's best friend and his wife. Friend was John's best man at his first wedding and would have been at ours if we'd had one - but he was one of our witnesses. So that was good.

Today I popped into work to say hello, I haven't been since he beginning of February when I stopped - which is what prompted this thread in the first place. And left 5 hours later! And it was good. I cried a little, other people cried. We talked about John. And we laughed. I'm so glad I went. I don't know what I'm going to do, but going back is much more of an option than I'd ever thought it would be.

Then went to my parents for tea - my mum had made "birthday cake" - Victoria sponge with butter icing filling, lemon water icing on top and smarties round the top.
I walk in, cake on the side: "what's the cake for?", dad: "eating". Hmm
Go into lounge: "what's the cake for mum?", mum: "eating".
Wtf parallel universe have I walked into.
But very nice cake.

Lots of cards in the post again.
Work have said so many people have phoned, or called in etc.
I think the funeral will be busy.

Need to chose the music for the funeral, going to sit in John's car tomorrow and run through his most frequent playlists, but at the moment I'm thinking "The Fix" - don't know who it's by or if it's called that, but it's about fixing the odds - John was a racing man. And "One day like this", by Elbow? We were going to have this at our wedding - but that all got cocked up and we ended up with just the registrar tunes. And maybe the music from The Piano, which John liked.

Oh I love "One day like this." Love it. It's a real celebration of life. When is the funeral?

What really shines out of your thread is that everyone loved John. That will be such a support in the future, though I daresay nothing helps now.

I'm going out now (to a friend's to catch up on Homeland) but I hope you have a good night. I'll be thinking of you.

One Day Like This is perfect

I am so sorry I had to giggle at your parents and the cake

It's very cathartic to talk to people who obviously like and respect John, don't rush into anything regarding work but good to know you have options

"What's the cake for?"
"Eating"

The boys and I were just looking at each other in puzzlement.
It wasn't just cake, it was the cake my mum makes for every family birthday - and only for birthdays.
"For eating" !!!
I'm still shaking my head about it.

You sound like a lovely person with a lovely family. Slightly bonkers but lovely

I'm glad the visit to the office went well and I'll bet you'll know when (if) to return. You seem to be drawing strength from knowing you did right by John, both in your marriage and during his illness. And you're doing right by him now.

Ah, sweet - your mum baking that cake. And your son with the hug.

I'm glad your time in your workplace went so well.

Lovely lovely family - not so sure about me!
Not usually bonkers though, it was so totally out of character - which is why we were just .
Given me something to laugh about though.
Night x