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.

Sorry to read about your friend Dowser, it's just crap.

Hi Squirrels, just popping by to say that I'm thinking of you. Keep plodding on, your description of your pottering in the garden made me feel that you are finding small comforts and distractions, which is a smart move. Glad your DCs are staying close

A good day yesterday, we are having a break - me, the boys and my mum.
Went to Stonehenge on the way, have driven past before but never been. Was a lovely afternoon, wouldn't be much fun in the rain.
Then onto Cheddar, staying at Cheddar Woods in a lodge. Ds2 nagged everyone to get in the hot tub when we arrived, then again at about 9pm - my mum didn't want to and was then glad she had.
Not sure on plans for the rest of the week.

Everything I do, I think "John should be here".
He enjoyed life, much more than I ever did, and he made me enjoy life too.

I wonder what would have happened to us and our relationship if he hadn't died.
We had a difficult start as he'd recently separated and I wasn't convinced that he wasn't just playing me and it took a while for me to accept that he wasn't.
I think we were both damaged by our pasts and we healed together, but it wasn't just that.
After I accepted that he did want me, and love me, and that I felt the same, it all became very easy.
We almost never argued (I recall 1) and while I was a bit snipy at times (PMT related) John was always calm and level and accepting.
He gradually became part of our family life and when he moved it it was seamless, we didn't have any issues with my children and he was as happy when they were there as when they weren't (well maybe not quite - we spent a lot of that time in bed!).
So when he was diagnosed last year, 5 years in, I was more in love with him than ever.
Looking at him flipped my stomach, kissing him did more and the sex was fantastic.
But more than that, just being in his company. My heart lifted when he walked in the door.

I don't know, and never will, if that was still the 'first flush' and whether it would have lasted.
I assumed that it was going to, and the realisation of that is what made me decide I did want to marry him after he'd given up asking me, well that and wondering if the fact he'd stopped asking meant he'd stopped wanting to. The delight on his face when I asked him answered that one for me.

I miss him in everything I do, but I have to keep doing it, keep going forwards, because I can't go backwards to the place I'd rather be - with John.

The way you describe it, I don't think it was just the honeymoon period. I'm sure it would have continued and life is a bastard for taking the opportunity to grow old together away from you. I hope you can take some happiness from the fact that some people never experience that intense kind of love in their whole life. Yours was cut short, but you had five years of that. I hope that's some comfort.

So when he was diagnosed last year, 5 years in, I was more in love with him than ever. Looking at him flipped my stomach, kissing him did more and the sex was fantastic

You lucky woman. How I wish that luck and love could have lasted decades longer; but five years of stomach flipping and fantastic sex sounds good to me!

And if John only had 5 years left on this earth, how wonderful that he got to spend them with you.

On my good days I feel very lucky to have had John in my life, to have had his love and to have loved him.
And on my bad days, it just makes me cry.

I know, squirrels. My lovely mum died when I was a teenager and a friend of my older brother's sent him a card in which he wrote, simply "it's shit".

I've often thought, over the ensuing decades, how right he was.

Hi, just popping by. Hope that you and the boys (and your mum) are benefiting from the change of scenery.

Hi squirrels, just checking in from holiday. Glad you've had a break, too, though I know it must have been very bittersweet to be away without John.

Evening Squirrels. I know it may sound daft, perhaps you can regard each of your tears as a much needed hug. In time you won't need quite so many to get through

Grr, I wrote a post which seems to have disappeared.

Another good day on Tuesday, we didn't do much buy just all hung out together. Lots of hot tub, some swimming, a drive through Cheddar Gorge, some activities for the boys and a nice meal in the evening.

Not such a good day yesterday, I got cross with something and then afterwards just though about how John would have been in that situation, would have just calmed everything and turned it round. And that made me cross with myself that I hadn't. The boys were lovely with me. I had quite a few tears yesterday.

Not sure what we are doing today.

Nearly typed this on the other thread. Just wanted to say: Romantic love morphs into unconditional love and that is what keeps us going when things fall apart. You both had that in great big heaps. I also so wish you still had your John with you.

A better day today, the boys and I went into Cheddar Gorge and walked up through it a bit. Plus hot tubbing and swimming. And relaxing. But I'm missing John more and more. I could easily just sit here and cry.

SIL messaged me earlier to say that the 1st race at our local racecourse at one of next month's meets has been named in his honour.
John was raised by a mother who liked a bet on the horses and he did too.
I know who has arranged it, and swing it on the website took my breath away a bit.
I'm not interested in the races, but have been more than a few times with John.

Oh that sounds lovely and heartbreaking at the same time. Sending hugs.

Home a couple of hours ago, had a good break with a bit of a wobble on Wednesday.
Very hard coming home, missing John - unsurprisingly. He's left a gaping hole in my life and I just want to fill it - but is isn't fillable at the moment as it wouldn't be John. And I'm not in any emotional shape to do so.
Guess it will just take time, and then a whole heap of luck to find something as good as we had.
Boys here tonight then to their dad in the morning and back Sunday evening. Then back to school on Wednesday. Not sure on plans for the next few days, or weeks.

Glad you had a good break, wobbles aside.

You're right that the gaping, John-shaped hole in your life isn't fillable by anyone or anything else. But other happiness, of whatever form that takes for you, will come along, and your life will become broader and fuller... with that, the missing part becomes easier to cope with on a day to day basis. xx

Hello Squirrels, I found your thread after your heads up. You write so eloquently about your wonderful John and what he meant and still means to you. And the photo of you both is wonderful.
Sending my love.

I hope so.

X-posted. Thanks FuzzyCustard.

Just found John's passport.
He last remembered having it when we went to give our notices for our wedding, before his diagnosis. Then his daughter needed a new passport and asked for details of his for her application and he couldn't find it.
He looked all over, he thought it might be in a suit pocket from when we gave the notices, he'd moved them to the spare room wardrobe as he'd lost so much weight they no longer fitted at all, but I went through them all last autumn before I put them in charity bags and the passport wasn't there.
Just found it in his leather jacket pocket, along with a couple of handouts from the GP about his fast track referral. He'd not been to the doctors since he moved in with me so had needed to register when he did go - and had obviously taken his passport with him for that.
His leather jacket, which he'd had for years, and which just smells "John" to me, is in his wardrobe and again he hadn't worn it for months as it was far too large.
I want to tell him I've found it.

Ds1 was there and hugged me as I was obviously upset, then hung around and chatted.

I want to talk to John about just how much he obviously meant to Ds1. I don't know if he really had any idea - I certainly didn't.

Even if I meet someone else in the future, we won't have shared together the experience of watching my children growing up, we won't have that bond - even though they aren't John's kids, he cared for them alongside me and shared my happiness in their successes and laughed at their silliness with me.
It's so crap that we haven't got the opportunity to do all those things together that we wanted to.

Up and down day.
Boys went to their dad this morning rill tomorrow evening a day I went back to bed, and cried a bit.
Had a few phone calls checking up on me.
Then went for a walk with a couple of friends this afternoon and back to theirs for coffee. They invited me to stay for tea, but have also invited me to lunch tomorrow and partly I just need some time alone - even if I do mainly cry then, I think I need that.

I'm not a very sociable person, I've got a few very close friends - well a few more than I thought I had before this. And John was my best friend as well as my partner, lover, husband and really alI my emotional needs were met through our relationship, and my children.
So his illness and death has left a massive hole and it's a very lonely place.

Hi Squirrels. You're understandably in a very reflective phase so if that means you need to take time to be alone and have that, then it's good. Forced gaiety is also exhausting.

I'm glad you've found that your friends are greater in quantity than you realised, you don't always have to lean on them but it's a comfort to know that they are there.

On a practical note, you can cancel the passport and have it returned to you. As it is, it would be rather useful should it fall into the wrong hands.

Hi there Squirrels. How are you today? Thinking of you. I'm not very sociable either but sometimes it helps to know that you are in someone's thoughts.

Have some Easter

A very lazy, feeling sorry for myself, morning - followed by lunch at a friends with their boys and one of their neighbours, and a lovely afternoon chatting to them and the neighbour. Just home at 7pm and boys will be back soon.

I definitely need both the time to myself, to reflect and cry and let go, and also the time with other people, to be me and enjoy life.

Coming home is very hard though, to our home - but without him.

TQ1 you are in my thoughts too - your thread was my next stop after this one. Hugs x

Just to bed after another late session, this time with both boys.
Ds2 eventually looked at his clock and said "I don't want to be mean, but it's 12.05 - can you and ds1 go and continue this in your room mum".
I'd say it's an early night tomorrow, but they've both asked friends for a sleepover.
Early night on Tuesday before back to school on Wednesday then!
I think it does us all good to be together and talk about John, and other things in their lives, though.