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.

I have no idea what too soon means to be honest.
My boys were planned to be with their dad the first week of the holidays and us the second. ExH had arranged various things to keep them buys but we've rearranged dates a bit so they'll now be with him Fri - Sun evening, Wed - Fri morning (they are going glamping but he's bringing them back early for the funeral) then Sat - Sun evening. Then with me most of the next week, maybe back to him for the last weekend but I can cancel that.

I don't have to be home alone. My mum will come and stay with me at any time I want. And friends are around. But I also need some alone time. But thanks for thinking of me.

squirrels you are doing so incredibly well, I'm in awe. I think alone time is really important - it's the time I use to go over and over stuff, to try and process what's happened, to give in to the raw grief that feels too private to expose to anyone else etc.

Perhaps you're not in full-on shock, but some sort of "keep going for now" mechanism has kicked in. I look back to that first week and although I know I did a lot of the official stuff that had to be done, I can't actually remember doing it with much clarity. You sound so together. I think you're being amazingly brave and resilient and I send you lots of love and heartfelt support. Xx

Oh - and the flowers thing! I felt the same. So many beautiful bouquets but when they started to die away I felt ridiculously sad! Interestingly, the only plant I was bought came from a friend who was herself widowed some years ago.

Thank you Juan. I don't know that I am, but I've not fallen apart as I expected to.
Well I have fallen apart, but I just feel calm amongst it all.
Maybe it's the time it's taken to get here rather that the suddenness?

Sending you all nothing but strength and love xx

I have just read your thread (I found it because my friend has just been diagnosed) and I want so much to say how terribly sorry I am that you are going through this terrible time.

Sending you love and sympathy.

Very for you chasing xxx

Dear Chasing I got drawn to your thread for purely selfish reasons. (DH has been diagnosed with inoperable cancer. Drs think they can delay things - maybe even for a couple of years - which we are very grateful for but at some point the treatment will stop working.
You sound so incredibly strong and your love for John jumps out from your every post.
I have been reading about anticipatory grief and I think that's probably why you haven't 'fallen apart.' The last few months in particular sound so hard and I just hope I can be half the woman you have been. Thinking of you

Sorry ! The is a plant obviously - NOT flowers x

Gosh squirrels, you are coping so well. Thank you for sharing the photographs. It is an honour to see you & John looking so happy. X

I happened upon this thread as it was in 'active' and have sat and rtft.

Chasing I'm so sorry about your loss. The photos you kindly shared show the love that you and John shared, in fact it was breath taking to see the way you looked at each other.

As I was reading through I also noticed that once you mentioned his name others used it too. And as much as MN is mainly anonymous, there are real people behind the user names, with real feelings and experiences.

So thank you for sharing your photos, for sharing the love you had with John, and allowing us to be privy to that.

I'm glad you have the support of your family and friends around you as you tread this new path. I'll be thinking of you as your thread has touched me x

I too have only just seen your thread in 'active'

OP - so sorry that John has died. The photos you have posted are beautiful, there is so much love in both you and John's eyes for each other.

Thinking of you and your DC. Lots of love to you all.

So sorry to hear of cancer diagnosis for others .
I know when John was first diagnosed I read about his cancer but I couldn't bring myself to read ahead to what happens when the treatments start failing. I don't think I could have read this thread to be honest.
Try to live in the moment, I know that the moment might feel shit, it certainly did for me and I didn't want to live in it. I rallied against being told that.
And you might get better moments, we did - during John's chemo last summer he was reasonably well apart from the 3-5 days after each "dose of domestos" as he called it. My 2nd picture is 2 days before his 3rd chemo cycle. But also, in the better moments, you might never have another moment as good as that one is - so embrace it as much as you can.

I'm only 44, I could live again as long as I've already lived. And however long I live I will have only had John's love and presence in my life for a short time. But it was amazing while we had it.

I had a quiet day yesterday. My mum had stayed Sat night so I didn't come home to an empty house then I slept in late. My mum went about 11am and I went to get dressed and was going to potter in the garden, but I just went back to bed and MN'd and read old emails between myself and John and thought about him. Got up around 3am and had a shower etc then my boys were home at 4pm and we went to my parents for tea. Back around 9pm and all sat quietly in the lounge for a while then talked about John a bit.

Knackered this morning - but slept fine, think was asleep by 11.30 at the latest and woken up at around 7. I think it's partly the clocks going forward, and partly the last couple of months. Just conducted the boys out of the house and come back to bed! Boys with their dad tonight and my mum will stay over if I want her to.

Need to call the registrars and get an appointment, reply to the undertakers about the death notice, contact the chaplain, contact the hotel.

And then there is his estate - which is NOT going to be quick and easy.

At the end of January, when John had just had his last scan, I was in such a quandary about what to do regarding work, whether to resign etc, John said to me "I could be dead in 2 months and a month after that you might want to go back to work". I asked him if he thought he meant so little to me that I'd be over him in a month (not to mention at that point thinking he'd be dead 2 months from then), and he just said I should keep my options open and I might need to go back to keep myself going. It's far to early to think about it yet, and I don't know if I'll want to go back - in many circumstances returning to work would be a normality and a distraction, certainly when my exH left work kept me going, but my whole life with John is tied up with work - he will be there in everything I do and every client I see. And I don't know if I can cope with that, and with someone else taking over partner responsibility for those clients and having to deal with them instead of John. I'd worked for him for nearly 17 years, and for a long time before we forged our romantic partnership we were (and continued to be) a very good working partnership. But I will, at some point, have to do something. And there are people there who know and care for me, and who knew and liked John. So many happy memories. Maybe in this regard John knew me better than I knew myself - we will see.

I've never really been a writer, I'm logical and concise and organised, but all I want to do is pour out my thoughts at the moment.

I'm glad you slept well, and that pouring out your thoughts is helping.

I hope all the admin of practicalities and a complex estate doesn't get overwhelming - take it slowly wherever you can, and ask a trusted family member for help if the amount of time it's all taking gets overwhelming. My wonderful father got rather good at my signature.

All your thoughts on whether to return to your job in the future sound like helpful mulling. In my experience there's no such thing as too early to think about something, when you feel you want to, just too early to make a desicion.

Just been to register his death, where we married last year, and the registrar who did the paperwork then (not the ceremony). Then as the ceremony room was empty I had a few moments on my own in there.

I bet that was bittersweet.

That must have been so hard chasing x

Thank you for your very thoughtful post to those of us who are a little way behind you. You are so right and I need to heed your advice.

That must have been so emotional for you Chasing, I can't even imagine how hard that must've been.

Squirrels I get that overwhelming desire to pour it all out in writing. I think it is something you will really appreciate down the line, when you want to revisit and remember details of this time, which unimaginable as it may seem, you will.

I think I get where you are with the 'falling apart' business. With my DF, it was a rather long drawn out end, and with each day it became more apparent that it was one day closer. So many tears in the run up and during, but oddly calm after. I sometimes have wondered if I grieved enough, but then think of all that anticipatory grieving. I miss him terribly, but his poor body was truly done, and needed it to be over.

rhododendron bush in full bloom

That's exactly it - John's body had nothing left to give. He was a big man, 6f2 with the weight to match! I never thought of him as particularly fat although he did have a very lovely cuddly stomach and having looked at pictures of him before we were together he was quite overweight, although he carried it well and I don't remember particularly thinking that years ago. He was 16 stone in September 15, and his last recorded weight was 62kg a few weeks before he died - and he seemed to shrink in those last few weeks so I'd imagine he was under 60kg.
I was checking his pulse on his stomach ad he was stopping and starting breathing in the last few hours and he basically didn't have a belly button hole anymore - it was just flat.
You couldn't have lived through my last two months and not already been grieving. I cried nearly every time I walled out of the room he was in, and sometimes silently as I sat next to him.
Which isn't to say I'm not grieving now, I definitely am. I find it quite hard to talk out loud about him without my voice breaking, but while I'm talking about him I'm just feeling our love surrounding me.

Ds2 took this picture on the London Eye in June 2012.

you really are a beautifuly couple!

beautifully matched. Sheesh. My fingers have not yet adjusted to Monday!

Hi squirrels just dropped by to say hello. Gosh, the registration of John's death will have been so, so hard for you. You sound very strong, but I know that doesn't detract from the searing pain of his loss. Although you come across as a 'coper' you can't put a bandage round your heart, can you.

Stay rested and take things one day at a time. Lovely you have your mum for support. My mum was absolutely amazing when my DH died. We created a special bond because we lost my father from cancer so she knew how bad things felt losing a life partner.

On my own this afternoon / evening. Took my mum with me to do to me death registration, although I did the appointment on my own, then went back to theirs for lunch.
Boys with their dad tonight and mum asked repeatedly if I wanted her to stay - but I just wanted some space.
Came home mid afternoon, and sat in the sun on the front door step (sun trap) and pulled up weeds and staked my hyacinths and pottered.
Then planned to tidy the house a bit, but haven't .
An old friend who used to work with us called, then I messaged a bit with another old colleague who said;
"But like you said, you know how much you meant to him. All the old WS people that I've seen have said how much John changed - relaxed and mellow and happy - when the two of you got together."
I wish he could hold me again, and kiss me, and take me to bed!