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DH's cancer progression - DH has died [title edited at request of OP]

726 replies

Chasingsquirrels · 07/02/2017 20:44

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.

OP posts:
marriednotdead · 06/04/2017 22:05

Wishing you the strength to get through the funeral and beyond. As you say, your time with John was unfairly short and yet so special and precious.
It's such a hard day but having previously been married into a West Indian family, I have been shown how to treat funerals as a celebration of their life. I appreciate we all grieve differently but I have found enormously helpful and somehow soothing Flowers

DramaAlpaca · 06/04/2017 23:00

I will be thinking of you and your boys tomorrow Chasing Flowers

SelenaValentina · 06/04/2017 23:03

For tomorrow, Chasing Flowers, hugs.

2017SoFarSoGood · 06/04/2017 23:08

hello Squirrels thinking of your tomorrow.

I suspect you will surprise yourself - and others - by reading or saying something yourself, even if you don't think you can up to the last moment. A love like yours has so much to celebrate, and that's really what a funeral is, at best.

You will be overwhelmed with the amount of people holding such love for John, and for you and the boys. It is healing in some way, so let it all soak into your weary bones. A love bath. Now isn't that a nicer way to celebate the life of the man you loved?

Flowers
hellsbells99 · 07/04/2017 00:16

Maybe a puppy (or a lamb) is just what you and your DS2 need at the moment Squirrels!
Thinking of you for tomorrow Flowers
I hope everything goes okay.

PetallyTyrants · 07/04/2017 01:17

Sending lots of love to you today, squirrels.

MirandaWest · 07/04/2017 06:33

Thinking of you today squirrels

Horsemad · 07/04/2017 07:16

Thinking of you and your family today squirrels.

Chasingsquirrels · 07/04/2017 08:25

Quiet day yesterday, boys away with their dad for a couple of days - back in a while for the funeral.
I just mooched most of the day, then went into town briefly and got a black jacket I can wear with the dress I'm wearing.
My brother is over and staying with my parents for a few days and my mum's youngest brother and wife are down - so went over there yesterday evening.
Mum wanted to come and stay here with me last night and come with me to the funeral, but I just need my own space. The boys will be back and I'm fine just driving with them.

John's funeral is 12 noon today.

The sun is currently shining (although forecast dark cloud later), and my hens are clucking about so I need to get up and feed them and get showered etc. I'm not good at eating breakfast but won't then eat until later, and we are just having afternoon tea type sandwiches and scones after the funeral so won't eat a lot then - so I'll make myself have some breakfast.

I mostly sleep fine, but woke at 5.30 this morning then dozed on and off till 7.

Not sure about saying anything (have been practicing out loud!) but the pastor is ready for that and will read it if I can't.

OP posts:
smartiecake · 07/04/2017 08:31

Chasing whatever you do I am sure the John will be proud of you.
Thinking of you today.

Gasp0deTheW0nderD0g · 07/04/2017 08:57

I hope it all goes well today, ChasingSquirrels. Thinking of you and your family today.

IDontLikeMyUsername · 07/04/2017 09:52

Just read your whole thread ChasingSquirrels and will be thinking of you, your family and John's today.

Willowkins · 07/04/2017 14:37

I have been thinking of you and your family today squirrels no words just hugs Flowers

Chasingsquirrels · 07/04/2017 17:39

What a lovely day, what a shit reason for having it.
So many people who loved and cared for John - he should have been there, and not in a bloody box.
Am at my parents, with boys, my brother and uncle & Aunt.
Tonight is going to be hard.

I did speak, I'll post what I said later.

OP posts:
FiveGoMadInDorset · 07/04/2017 17:42

Well done for speaking Chasing, tonight is going to be hard as are the days weeks and months ahead

SuperMoonIsKeepingMeUpToo · 07/04/2017 18:03

Well done, Squirrels. I'm so sorry you had such a lovely day for such a shit reason.

SelenaValentina · 07/04/2017 18:41

Flowers Flowers Flowers

Take each moment as it comes, try and remember to breathe.

Flowers Flowers Flowers

FiveGoMadInDorset · 07/04/2017 18:49

Missed half my post, but it will get easier and you will start smiling when you remember John rather than feel an overwhelming urge to cry and keep talking to him, he is still with you

PetallyTyrants · 07/04/2017 19:04

Just checking in on you, Squirrels. Will be back later.
Flowers for John

AFawnDawn · 07/04/2017 22:05

Well done squirrels. I'm sure you did John proud.

DramaAlpaca · 07/04/2017 22:14

Well done squirrels. Hope you are OK this evening.

Chasingsquirrels · 08/04/2017 00:20

Funeral at 12 noon, afterwards at a local hotel, left around 5pm.
Crem was practically full, around 200 people, so glad we went with the larger one. Probably 100 came back afterwards.

Went back to my parents afterwards and had the evening with my them, my boys, brother and uncle & aunt. Home around 10pm and just had an hour or so snuggling on my bed with my boys, talking about and remembering John, listening to the music we had at the funeral (the theme from The Piano, The Fix - Elbow & One Day - Elbow) and just being together.

Five I think I've been at the remembering him with a smile stage ever since he died, which isn't to say I'm not also remembering him with tears, and sometimes both together. But I do feel like I've got this smile deep inside me when I think and talk about me, like I'm holding everything we had there.

I've not cried since I was on my own this morning, before I got up. Ds1, having said he didn't need a hanky, cried through a lot of the service, ds2 just held my hand.

And now, I'm on my own in bed, and I can cry.
It's about control, I hate not being in control, of most things in my life, emotions included. But on my own I can be myself.
I wasn't in control of anything with John, it was like being hit by a steam train. Which is weird as I'd known him, he was my boss, for over a decade when we got together and before that had never thought anything of him, he was just my boss. I've to this day got no idea how on earth it actually happened. But I remember on our first date we sat in a restaurant having lunch, holding hands, and just looking at each other.

It wasn't that he was in control of me, neither of us needed to be, we were just in partnership.
I was myself with John as well. He 'got' me, and all my prickliness, and awkwardness, and defensive layers - and he loved me regardless, he didn't just love me, he adored me.
I miss him so much, and every time I realise I'll never see him again it hits me like a body blow, but my god I'm so very glad we had the time we did, that I loved and was loved like that.

This is what I said...

When things weren't going quite as he wanted, John used to say "it will be alright in the end, and if it's not alright it's not the end yet."

He said to me last February, when we were in Antigua and spending the evening planning our wedding, that he felt like the luckiest man in the world. That he had everything.

A few months later when his cancer was diagnosed he recalled that conversation, saying he thought he'd had everything - and now he did, but not in a good way.

John suffered a lot over the last year, and particularly so over the last few months. He hid it well from almost everyone and tried to carry on with life in his usual cheerful way - helped in no small part by his unfailing ability to stick his head in the sand and ignore reality!

At the end of January it became apparent that reality could be ignored no longer and John retreated into himself. The last couple of months were very hard for both of us, but at the end the medical team were able to overcome John's pain and let him rest.

John died peacefully in my arms, with his DS and DD by his side, surrounded by love.

And in the end, for John, it was alright.

For those of us who loved him, without John it's not alright, but, as John would have said, "if it's not alright it's not the end yet".

Goodbye my love, you will always be in my heart.

OP posts:
Horsemad · 08/04/2017 00:46

Squirrels, you write so beautifully. Flowers

2017SoFarSoGood · 08/04/2017 01:15

Oh Squirrels. My heart swells that you have such love for this man, and he for you. My heart aches that you are not still together in the here and now.

Thank you for letting us glimpse this love story. A story that will always be, regardless. Flowers

daisychain01 · 08/04/2017 04:59

Beautiful heart-felt words Squirrels, RIP John.
You sound very strong, I am sure even though I don't know John, that he would be proud of your dignity.
This dying stuff is absolute shit. But you and he had a wonderful moment in time, didn't you. Never bloody well enough though is it, it flashes past like the blink of an eye xx