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.

Those photos are beautiful, Chasing. Cherish the good memories.

Tweaster - I'm so sorry about your loss as well.

Why can't life be as I thought it was as a child - everyone dies at 100.

Lovely photos, squirrels - as others said, you can really see that love bond shining between the two of you. So sorry John has gone but glad he's not suffering any more. (((hugs))) for you and your boys x x

I'm so sorry for your loss of John chasing

Your love shines through your photos.

Stay strong

Thanks everyone.
Yes Squirrels, it certainly does.
It's the little things rather than the big expected things that are painful
My boys have reacted in different ways to how I predicted. In fact they each reacted in the way I thought he other one would so overall I got the expected effect, just individual variations. I got know why j expected a particular reaction as I haven't reacted in the way I would have predicted either!
I hope the next while goes smoothly and you can take comfort from your family and friends around you.

Thinking of you and your family Squirrels x

Everyone dying at 100, wouldn't that be a thing.

Thanks Juan.

Teawaster - my boys have reacted the other way round to my expectations as well. Who knew!

A friend popped round this morning, so I invited her in and we had a chat.

Went to collect the death certificate at lunchtime and then to the undertakers - so that's mainly sorted. I need to speak to the minister, neither of us are religious at all but his mum is. I'm not having a church service and didn't want the minister from her church (who no one, including MIL, speaks overly highly of). The undertaker suggested a local chaplain with a connection to an activity which John was very fond of - which sound like a good compromise.

Then went to meet ds2 from school and had a quick chat with his class teacher, the head and then some of the other mums.

Took Ds1 over to see his best friend and popped in for a very quick chat with his mum, who is one of my best friends.
Then sent my mum home, took ds2 to judo and came home and had an hour at home on my own - I read DH's will (which I hadn't seen but we had discussed and it was as expected).

Then went to see another friend before collecting Ds2 from judo, Ds1 from the friend and then all home where we watched an episode of Stargate! (DH watched it years ago, maybe with his son, and had the box set - we'd been working through it with ds2 for a few minths).

Just sent ds2 to get ready for bed and I won't be far behind.

Squirrels, you wonderful, brave, amazingl woman, you. I haven't posted before, but just wanted to add to the chorus of people extending their sympathy to you. The love does absolutely shine through your words and the beautiful photos of you with John. How lucky you were to find love with him, and how brutal life can be taking that away. Hoping you are holding up, and thinking of you .

Squirrels your photos of you & your lovely John are just gorgeous. They really, really are.

I think that the way you look at one another in themis wonderful x

Hello Chasing.I am a relative newby on mums net,but have been reading through your posts of late .and you have been so strong and amazingly open and honest about this most saddest time for you. I am so sorry that you have lost your true love now.Your lovely photo showed how happy you and John were together.

Condolences to you and your family now,, CYN.

Sending you and your boys all the love and support in the world...Rest in Peace John....I've been where you are now Chasing, 12 years ago I lost my lovely DH to cancer...one day at a time sweetheart, there is no right or wrong way to grieve....just be as you need to be....you are in my thoughts more often than you know xx

Chasingsquirrels, I am so sorry for your loss.

I'm so sorry for your loss Chasing. Your love for John shines out of your posts and it is so unfair that your time together was cut short.
Sending you much love and strength for the weeks ahead.

So many cards, work sent a letter out to clients on Thursday to inform them of his death, so it would have been received yesterday at the earliest - so today's post is just the start.
And the house is full of flowers. They are lovely, but so fleeting - I remember thinking that when people sent flowers when we got married and others brought flowers to our party (we'd been living together for a few years before we got married, didn't need anything and tbh what do you give as a wedding present to someone who is terminally ill). If I ever want to send something after a death in the future it will be a plant not flowers. But they are all so beautiful and given with love and the need to DO SOMETHING at a time when in reality one can do nothing.

My boys have gone to scouts an hour ago and I need to get up and ready before they are back in an hour.
We are then popping over to his mother's to see them and his daughter & maybe son as well are calling round there too.
Then, having seen the state of ds2's school shoes yesterday, we are going shopping!

I texted the manager of a local hotel, which is just down the road from the cottage he was renting when we first got together and where we'd often go for an evening snack in the early days of our relationship. John knew the manager professionally and socially. He's looking into what they can do did us after the funeral. I have some very happy memories of being there with John.

Chasing I really admire your brave and strong attitude, I'm sure you sound braver than you are!

hello chasing you are sounding so busy at the moment, please make sure y have time for yourself xxx

I am late to your thread, but I just wanted to say how sorry I am for your loss.

And such beautiful photos. The love just pours from the photos. So so beautiful.

Chasing I haven't been on MN all week so only just saw that John has died. Will PM you.

chasing, he looks such a kind man.

Well done for keeping going and making life as "normal" as possible for the children - that takes courage.

Deepest sympathies to you and all your family Squirrels xxx

Well this is a late post! Not helped by the clocks just having leapt forward an hour. And I didn't get home until gone midnight.

Been to MIL's for dinner, cooked by SIL and with her husband, their two adult children and the new-ish partner of one of them who I've not met before (and who seemed a really lovely man, so happy for her. I told her so and she kind of glowed . I glowed like that with John), and a family friend.
My amazing mum (bugger - it's Mothers Day now, and the card I got her today is downstairs unwritten) came over before I went and stayed here and is staying the night - so I didn't have to come home to an empty house, my boys are with their dad.

Really lovely evening with lots of laughter, and a few tears. John would have enjoyed it, and should have been there - which was bittersweet. I sat there at times thinking "he'd be rolling his eyes at that and sharing a glance with me". And that made me smile. I sat there at other times just wanting to cry - and did when they raised a glass, to him and then to me for how I'd loved him and cared for him.

I read a post a few weeks ago from Tunnocks about how she was having flashes of herself again, and when the boys and I were in the car this afternoon I definitely had a flash of feeling like myself again.
It's been a hard year, and a fucking awful last two months.
In reality I've been losing John in varying degrees for a year, and exponential so the last two months.
I've been carrying him for months both at work and at home, and I've been caring for him almost constantly for the last two months.
And it's been hard, so very very hard.
And now that's over, and I am relieved he isn't suffering any more, and I'm relieved for myself too.

I asked on this thread a few weeks ago if what came after was harder, and a very wise lady told me not harder just different.

I talked about John to my mum a bit when I got back. And while I'm finding it hard to get the words out at times, I've a smile in my heart as I say them. I've got a smile in my heart, and tears on my cheeks, as I write this.

I wonder if I'm still in shock, I seem to be functioning much better than I though I would. I'd not even allowed myself to think about after over the last few months because I would have fallen apart - and I couldn't fall apart, I had to look after John because he needed me. And now it is after, and I'm not falling apart, I don't think. Which is not to say I'm a normal fully functioning me. I'm so so sad, and I miss him with an ache deep inside me, and I've cried.
I talked to my mum about that too, and she said she'd wondered. But I don't think I am.

John cherished me, and I miss him dreadfully, but I had that with him and I wouldn't change having had that for anything.

Juan I was going to post on your thread after typing this, but I seem to have waffled somewhat, and it's now very late, so I'm just sending my love to you now.

Chasing - I have only posted once here, but just wanted to say I am reading it all .
I don't know if there is anything I can put down in words that hasn't already been said much better than I could.
Take care , hope you can rest

You write so eloquently about your feelings and experiences, Chasing; you're very engaging.

Sounds like you had a lovely time last night. You've got a fabulous support system around you, full of people who loved John. That has to go a long way in helping you get through these times. You're not writing this as if you're in a dark place at the moment - rather that you're celebrating the light of John's life. I'm sure there will be harder times ahead but right now, you're coping. (as a pp said, it's a plant).

You are right, I don't think I am in a dark place at the moment - I've had some moments, and I expect lots more.
John cherished me, and that's in my heart now. I'm thinking and talking and writing about him with tears in my eyes and a smile deep inside me. I'd turn the clock back 2 years without hesitation, but I wouldn't turn it back over the last two months for anything.

@oxcat1 : I hope you don't mind, I have copied your message and my reply onto my thread here. Firstly I don't want to hijack Juan's thread, and secondly if I do want to read back through this thread again in the future I selfishly want it all in one place.

Add message | Report | Message poster oxcat1 Sun 26-Mar-17 13:53:59
Squirrels:
Love. I would certainly consider it. Was does 'too soon' mean? It isn't a celebration, just a way of coming together to love and support each other, and to share memories and talk openly as thoughts arise. We did have some very happy moments - children can do that - and also sad ones, but I value the memories from that break as significant and valuable in themselves.

Could you do something while your boys are with their dad? Have you got a good friend that you could visit? One who wouldn't mind you collapsing into a weeping wreck at the kitchen table if that is what you need to do? I don't know, I was just a bit concerned about you being alone in an empty house, echoing with the absence of the boys as well as their beloved dad.

Add message | Report | Message poster Chasingsquirrels Sun 26-Mar-17 13:46:08
Juan, sorry to hijack again.

oxcat1, my DH'S funeral will be 7th April which is the end of the first week of the Easter holidays. My boys are 11 & 14. They will be at the funeral (their choice) and home with me that night, then at their dad's for a day-ish and home for most of the second week of the Easter holidays. I'd been wondering about getting away somewhere with them for those few days, but wondering if it was too soon. Your post has given me more to think about in relation to that - thank you.

Add message | Report | Message poster oxcat1 Sun 26-Mar-17 13:30:46
Juan (and Squirrels),
Words can't do anything to relieve the bottomless devastation you must be feeling right now. I am thinking of you both.

Juan: I have been struck by your emptiness, which I am sure is very common as the reality of what is a new life hits. One thing I would share is that, when I was 16 and my brother 12, our mum died. The day following the funeral, my dad took us away. We went to Whitby for a few days; we'd never been there before and I think it was the only time I missed school (!), but if did help with that post-funeral slump, and it gave us a chance to lick our wounds and gather ourselves together a little in private. We talked about my mum a lot, but also consolidated our new life as a family of three.

I don't know if you could plan a short break with some of the family? Just a thought.

Hugs to you all