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 falling asleep on the sofa. Have had to make myself come to bed. And I want John so much. It's suddenly not very warm and I want him to let me put my cold feet on him. And to cuddle me. I want his love around me again.
I'm fucking sad now.

Hugs to you, I hope you have managed to fall asleep now squirrels.

Oh squirrels I'm so sorry of course you're sad. Can you wrap your feet in an old jumper? Hugs. Sleep well.

I went to sleep pretty quickly thanks.
It wasn't even my feet that were cold, it just usually is.

I was very sad last night, and I'm very sad now

SIL & husband are over to MIL's for Sunday lunch and I'm welcome - but don't know if I can face it.

And SIL, MIL etc is all weird. It's only 10 months since we got married, it hasn't settled into SIL etc yet. Mainly in my head they are John's sister, John's mum (for a long time I think my now 11yo thought her name was "John'sMum".

His watch is still on the bedside table, the jumper he'd been wearing is still handing on the wardrobe door.

I just miss him, not the last few months at all because it's just been shit, but the John I had for a few brief years before he got cancer last year.

And I've got a bloody cold sore.
And I haven't sworn as much as I am now for years. John never used to swear.
He was so good for me, good to me, a good man, but his precence in my life made me a better version of me.
I hope I don't lose that.

Glad you got some sleep. Yet another reminder as if you needed it that you have lost the one you love and it's like losing a bit of yourself. And it's so wrong. I hope you have a better day today.

Cross posted. You are an amazing woman. List all the ways that John made you a better person by all means but you already had/have a tremendous amount of love and inner strength so that you naturally took care of him (and your DC while going through all this).
I understand that you are hesitant to go to MIL for lunch but you might have a good time. Have you always got on? Are they nice people? I'll be thinking of you around about lunchtime anyway.

Thank you Willowkins.
Yes we have always got on. I was amazed when I first met them at how easily they welcomed me into their family. I went over last Saturday evening, but there were a few more of us then to lighten the mood. I'm just not sure about the 4 of us without John. And MIL is not coping well with it. John was her youngest (of 2) and has been quite a big part of her life in later years, and I think before that too. She has become increasingly frail and probably early dementia signs in the 5 years I've known her and until he became too unwell John had popped in to see her most days, either during the day if he was around or after work. Either just John or both of us would call round for an hour or so both weekend days. He'd make sure she was eating etc.
And then I'll have to come home afterwards. And I like being home, just not so keen on 'coming home' alone.

I'll see how I feel in an hour or so.

I went in the end, having put the bedroom furniture back how it should be first. Nice to see them, but missed John there, and driving home, and now at home.
Just been through his laptop to see if any significant information, which there wasn't, then looked through the photo folders - lots of pictures from holidays we'd been on, both together and with the boys. I know there are others from more recent holidays on his camera. Hardly any pictures of the two of us together.
I need to go and sit in his car and choose the music for the funeral, and really need to do that today. Then car will need clearing out - it's leased, in works name so they are sorting that, and will be collected at some point.

I'm so pleased you felt able to go and I'm sure John's mum and sister experienced the same initial misgivings then pleasure you made it.

Maybe that's a way forward, decide to do/go or not to do/go close to the time.

Hope the cold sore improving too.

Just been looking for the music we'd planned, but didn't get to use, for our wedding to check whether I wanted to use any for the funeral. Couldn't find it on laptop so then been looking at pictures - hardly any of John as he was always behind the camera. And then old emails from when we started dating - that was a mistake, now have a headache from crying.
Must be time for sleep.

Hope you managed to get some sleep, squirrels. I hope that one day those emails will bring back good memories but I can imagine how painful they are right now.

A good day today, I was on my own most of the weekend which probably didn't help.
Arranged to meet a friend at 9, went for a walk round the village then a coffee and back home for the boys coming back at 11. Been to get shoes for ds2, plus some bits in B&M (can't beat a bargain!), then emailed undertaker about order of service, music etc., did a tiny amount of pottering and persuaded ds1 to mow the grass.
Going over to a friends soon so ds2 can feed their 3 week old lamb.

No plans for tomorrow then boys going glamping with their dad etc on Wednesday morning and back early Friday morning for the funeral.

I've booked for us to go away for a few days next week and my mum is going to come with us, so that should be good. Going to Cheddar Woods Hoseasons site in a lodge with a hot tub and will let the boys chose some activities to do, they fancy archery, rifle shooting and maybe the climbing wall.

Ds1 came straight in and just hugged me when they got back, later he said he was just suddenly sad. I said it was probably coming back to the house and John not being here and it is sad, but hopefully the sadness lessens and we can just remember the fun times we had - then talked about some of the things we've done together.

My coldsore seems to have scabbed over without erupting all over my mouth, which is good.

Oh squirrels, you're doing really well. Maybe spending time with friends is better than being alone at the moment. I don't know. Perhaps a happy medium is best. Do whatever feels right but don't feel that you need to get used to being alone just yet; it is early days. Much love x

So glad to hear the coldsore did not decide to be a swine and do the dreaded spread. It is so unfair that they strike when we are down. Just not necessary.

Went to feed the lamb yesterday, which ds2 was just delighted by. Were also invited for supper - which was lovely and we had a really nice evening.
Ds1 decided he was making flapjack when we got home (it's his comfort thing atm).
Friend also has a horse and ds2 talked himself into a ride this morning, so we were back over there at 9 this morning to feed the lamb, brush down the horse, walk round the back lanes around the village, then popped to see the 4 week old pups that friends ds's is looking after while the owners are away this week. Ds1 stayed home. Ds2 was in heaven. Doesn't want to learn to ride (good) but NEEDS a puppy (no).

Ds2 has had a friend round for most of the day and off to my parents for tea shortly.

So in some ways things are good, but there is just this massive hole in my like where John should be.

It's still such early days though squirrel

It's sounds like you're doing the right thing - keeping the boys involved and busy but still having enough alone time for yourself.

Indeed - one day at a time.

Took the boys to my parents for tea last night, then an early night for all of us.

Boys away with their dad this morning for a few days, back Fri morning for the funeral.

Got them to strip their beds before they went, and did mine - so just finishing 4th load of washing today!

SIL called round for an hour on her way to MIL, they are staying until after the funeral now - and then who knows. MIL increasing frail and forgetful.

Then went to get my hair cut - I cancelled an apt a few days after John had his last scan which showed the secondaries spread, and that was so Feb! So it's desperately needed a cut but I just hadn't wanted to leave John. My fringe was past my nose and I've been pushing it to one side, and quite liking the length - it was a short bob it's now shoulder length. So I've just had the ends trimming and some layers put in and the fringe cut on the bias a bit (is that the right wording?) so it's kept the length but isn't in my eyes so much. I think I like it, but can alway go back to the bob if I change my mind.

Popped to Tesco, then home to an empty house.

My brother arrived this evening (to my parents) for the funeral and mum's youngest brother and wife coming tomorrow.
And John's family converging MIL's.

Things happen and I just want to share it with John - absent NDN appeared, card from colleague just signed with his name and nothing else, just things that were part of our joint life that we laughed about.

My friend brought an orchid to out wedding party for us last July - and it has put out a new shoot from where I cut the old one back and the flowers are just opening.
Life does indeed on (although I still maintain saying it to dying DH was totally inappropriate).

This is our lamb, the dog is not impressed with the bed take over

Loving that Five, friends lamb just pees on their dogs bed - regardless of whether the dog is in it or not!

I've read pages 2-6 in one go and I'm so inspired by your words, ChasingSquirrels. I'm so sorry for your loss. Life is so unfair at times. Your photos are wonderful in their obvious love. Look after yourself. Let your boys care for you.

Quiet evening on my own, chatted to a couple of people online and watched some to.
Finally written something about John's life for the pastor to read at the funeral, I've emailed it to SIL to pad out if she wants as I've only been involved in his life for a relatively short time - too short.
I've also written something to either read myself, or to be read out from me, depending on whether I feel I can read it.
I should have done it before now, but I think I was just formulating things in my mind. I could write so much about our time together, but John's life was obviously so much more than that.
Late now, so sleep!

A word of advice to help you manage speaking at the funeral. I spoke at my nan's funeral. (I'm in no way comparing the death of a lady in her 90s to that of a husband in the prime if his life) but mum my advised me to practise it multiple times at home. I did this and it really worked; the more times I read it out loud at home the less I broke down.

Rooting for you tomorrow.

Thanks Supermoon

Just to say I will be thinking about you and yr boys tomorrow and your family and John's. My friend read a small eulogy at her husbands funeral 18 months ago, bravest thing I have ever seen, she told us not to look at her so we didnt