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.

Beautiful words Chasing

That's just made me tear up, so lovely. Hope you got some sleep.

I have to say that I worry about age too. There's a big gap between DH and I and try not to think about it as you never know, but we're celebrating our 4th anniversary tomorrow and it makes me sad that we'll probably not hit any of the big milestones. Guess all we can do is make the most of the time we have. 7 years together so far and when it's the right person it makes such a difference.

Hope that you and your children will have a lovely calm weekend in the sunshine remembering your wonderful John.

They were lovely, heartfelt words. You really shared a true, pure love, didn't you? Too short a time but your story is the epitome of the expression ' 'tis better to have loved and lost, than never to have loved at all'.

He'll always be part of you. X

Very very sad today, my boys have gone to their dad for the weekend, back tomorrow evening when we will go over to my parents for tea with them and my brother.
It's such a lovely day, and I have tonnes of different things to do - but no enthusiasm to do any of it. Life can wait.

Hugs chasing- yes you're right. Life can wait today. Do whatever you feel up to today and be kind to yourself

Hugs.

I have just read the entire thread with tears in my eyes. I am so sorry Squirrels. You both look so happy together in the pictures and I agree with the previous poster who said John looks like a very kind man.

Oh my Squirrels, those words were lovely. They have brought tears to my eyes.

Thinking of you

Absolutely life can wait

Just checking in with you too. Sorry to hear it's been hard but you're probably due some time to stop and probably best to do that when you don't have to worry about the children.

Well I just mostly cried all day.
Definitely best to do it when the kids aren't here, I'm not hiding my sadness and have cried a bit with then, but I've not really let go when they are here.
Just been out for a meal with SIL and BIL and John's Uncle & Aunt at the hotel we went back to after the funeral yesterday, Uncle and Aunt are staying there. Lovely meal, lovely company - but no John, who was the only reason I know them in the first place. No one to exchange glances with, to really care about me, to cone home with, to cuddle me, to go to bed with. Just no John.

I hope you got some sleep. So sorry you're finding life without him so hard. (I'm trying hard not to think of the ramifications as I'd be lost too)

Thanks Cake, I think I just needed yesterday, especially after the funeral.
I fell asleep on the sofa last night, then woke up at 1am and went to bed, slept till 7am and then have been dozing till 8.30am.
Let's see what today brings.

I'm sure you'll need plenty of time where you can just be without pressure or having to take care of the children.

Hope you manage to do what you need today.

Morning, Squirrels. Have you read Sheila Hancock's book The Two of Us?

She lost two husbands to oesophageal cancer (not that she'd claim oneupmanship!), the latter being Morse actor, John Thaw. The book is part autobiographical and partly a biography of her John. She writes brilliantly and is very candid about her feelings and experiences after his death.

Might be of interest to you. Or not, but worth a mention if you've not come across the book (sorry if a 100 people have mentioned it to you in RL!).

Petally I haven't read that no, TBH at the moment I don't think it is something I could read. And what bad luck to have 2 husbands die of the same disease.

A better day so far, I think I just needed the downtime yesterday.

I've been out in the garden for a couple of hours - such a lovely day. Cleared out the chicken area - I don't know what they do but it was full of old bits of twig and branches (to be fair to the hens that's probably me just clipping the trees and leaving the clippings for the leaves to die off) and stones - I don't understand this, every couple of years I rake it all up and clear out the stones and they all come back.
Then weeded the front a bit.
John wasn't a gardener - he'd mow the lawn (a job I delegated to ds1 when John first became unwell) and do heavy jobs if I asked him, but he wasn't really interested.
I'll potter a little bit, but don't like the heavy work!
I've got a little patch at the front with a lavender hedge along both sides of the path and a bit of a cottage garden going on, plus pots outside the front door that have been full of hyacinth's which my mum gave me last year, plus pansies that I planted at the end of the autumn.
The back garden is another story! Lawn with mainly shrubby borders, but the lawn in a message and the shrubs are overgrown. Plus the hens have been free ranging out there for a few months due to a rat in their enclosure (hopefully dead now!).

Just having a break, then going to clear the boot of John's car out. It's on a lease, but under work so they are sorting it and it will be collected at some point.

Nice to read you got out in the garden squirrels. It really took me back to the 6 weeks after my DH died. It was June/July time and I worked like mad in the garden every day, it was my (probably weird!) way of working the grief out of my system. I did find it very therapeutic, because I became very isolated emotionally, inward looking and focussed too much on death. It really brought me back into life seeing things growing and hearing the birds in the hedge.

I love lavender, it isn't everyone's cup of tea, but I find the freshly harvested stems are so pungent! Too early for it atm , its only just starting to get bushy after winter, but later in the year it's gorgeous.

Hope your day is moving along and you are enjoying the elongating days. It's light until 9pm yay!

Also did gardening. Tiny garden but at least tidy now...

Hope you're reunited with your boys now. My DD is back after a week with her dad.

Yes I love my lavender hedge, until August when it falls all over the path if it rains, I really need something to hold it back.
Boys back and been to my parent for tea.

They were meant to be with him for the whole week but we swapped it around a bit after John died so they've just been a few days with each of us.

Bed soon

[Just copying this here from elsewhere, don't know if I'll ever read this thread through again, but if I do I want all of the things I'm putting down to be here]
Ds2 (11yo) seems to be fine, ds1 (14yo) is definitely more affected by it.
We were talking on Fri night and I asked if they'd referred to John as "step-dad" (when talking about him to others), Ds1 said only occasionally - then said he was more just dad than step-dad, which really pulled at my heartstrings as I had NO IDEA that he felt like that about John. He said he always refers to exH's partner as step-mum when talking about her, but John was just John.
He is spending more time around me rather than just in his room.

I've been checking in for updates and just wanted to let you know I'm still here (with ). Are you planning to keep this thread as a reminder of all you went through? I think MN is a very special place that enables us to share our deepest thoughts and feelings - and also just helps us get through. Bless your DSs for all their support and compassion.

Just read the last two pages squirrel.

So very, very sad.
When you're with the right person you expect it to be forever Or at least until you are really, really old..
There are no words anyone can say or nothing anyway can do to take your pain away . Its he most raw pain ever. All you wish is that you can turn back the clock and go back to the time when everything was ok and wonderful.
Cancer is the thief of time.

Lean on every one you need to lean on especially as the one you'd rather lean on is here.

Just cry it all out. You don't have to apologise to anyone.
It's just how it is.

My friend passed away today , too young. Leaving behind his beautiful wife and young children .

Just heartbreaking.

Is not here..apologies

The pictures of you and John are beautiful - your love for each other shines through.