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Life-limiting illness

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:
Badgoushk · 07/02/2017 20:47

It sounds like you're both going through a really tough time. I'm so sorry.

What is your worry about having this time off? The financial repercussions? Would be good to understand your concerns.

Are you feeling overwhelmed?

What support do you have in real life?

Chasingsquirrels · 07/02/2017 20:54

I suppose financial concerns although it shouldn't be an immediate issue, not knowing whether I'll actually go back - I've been there 16 years and have worked for DH throughout that (only been together 5ish years) and I don't know how it will be without him there, what I'll do if I don't go back.
A massive part of it is not really wanting to stop, to admit that I can't cope with it all - but accepting that I can't, and that at the moment I have to spend this time with DH and with making sure my kids are okay.
And then, usually when you leave a job you are moving forward to something else - and I'm not.

I do feel relieved that I don't have the responsibility any more at this point though.

OP posts:
Badgoushk · 07/02/2017 21:32

I think that you're looking at it as a bit of a failure by leaving. If I werw in your position I wouldn't be thinking of it in that way. More that this is the start of a new phase in which you and your DH work on ensuring he's as comfortable as he can be.

Do you have a supportive GP? Is your local palliative care team involved?

Please don't forget to look after yourself. How old are the DC? I hope you're getting some rest.

Chasingsquirrels · 07/02/2017 21:51

I think I've accepted where I am, I kept going for as long as I could, and now I can't.
I do feel I'm letting DH down, but I don't feel I have any choice in this - I can't keep working at this point.

I've done most of my handover over the last couple of days and just feel very sad about it, and about everything really, and needed to write it down rather than expecting answers that 'solve things'.
Thanks for posting x

OP posts:
Chasingsquirrels · 07/02/2017 21:54

And yes GP seems very supportive, although I've only met her for the first time last week - up until now DH has been well enough to go on his own.
Just been referred to palative care team.
My children are 14 and 11, they aren't his and do have their dad in their life - which is good.

OP posts:
Badgoushk · 07/02/2017 22:00

I'm sure your DH doesn't feel like you're letting him down. Have you chatted to him about it?

It's natural to feel sad about it. Your whole world is being turned upside down and it's natural to cling to familiar things. Be kind to yourself and take each day as it comes. You might find that one day you really want to go back or really want to do something very different. What line of work are you in, if that isn't too identifying?

flapjackfairy · 07/02/2017 22:00

Oh chasing sending a massive hug . You sound like you have coped amazingly well and still kept working but it is time to let go of trying to keep it all going and concentrate on looking after your dh and yourself.
I dont think you will regret this time spent with your husband and family so all i can say is just try to deal with one day at a time. That is more than enough for you at the moment.
I cant imagine how you feel and am so sorry you are dealing with this. Xxx

Procrastinatingpeacock · 07/02/2017 22:10

I'm sorry to read this Chasingsquirrels, I remember your posts last year. I think you've undoubtedly done the right thing both for yourself and your DH, and you won't regret it.

I hope that once you've adjusted to being away from work you are able to have some special time with your DH in the coming weeks and months.

Ilikesweetpeas · 07/02/2017 22:17

I'm sorry, I have nothing to add to what other posters have said. I'm sure that for now taking a leave of absence is the right thing. Also, please see if there is any support available for you? Maybe ask at the GP surgery, ours always wants to know if someone is a carer, or ask McMillan? Thinking about you and I hope that you and your DH get the help you need Flowers

Chasingsquirrels · 07/02/2017 22:43

Thank you all for posting.
I know I need to stop work (I'm an accountant in practice), and I do feel relived that I have done so, but it's also very hard.
ATM it is hard to imagine there will be a lot of reprieve over the coming time, he has gone downhill quite rapidly over the last few weeks - his words earlier were its been more like a free fall. I do hope we can have some good times, but if not then just being together, holding hands and being close.
Sleep I think x

OP posts:
Blossomdeary · 07/02/2017 22:50

It is good that you are freeing up your time so that you can spend this precious time together. It is a positive decision and the right one. If there are any financial issues, MacMillan have funds to help. Flowers

Chasingsquirrels · 08/02/2017 10:54

As I said yesterday I'm not looking for answers from this thread - there aren't any. I know what is happening to DH (without knowing the timescale, nor exactly how things will go) and I've had some time since last spring to gradually come to terms with that - I went through a period of what was probably shock last summer.
But I'm finding it helpful to put down some of my thoughts, and the work issue has been growing for a couple of months, culminating in this decision.

OP posts:
elastamum · 08/02/2017 11:37

I am so sorry this is happening to you and your DH, it is awful and having lost both my parents to cancer (my mum to throat cancer), I know how powerless one can feel in the face of a rapid decline in a loved one. I think you are doing the right thing taking leave of absence, the pressure of trying to juggle everything can be just too much, particularly when you just need to focus on spending such precious time with your DH.

My work did this for me too and I was extremely grateful for the time with my DM. You can always go back if you want to when the time is right.

Thinking of you both Flowers

bimbobaggins · 09/02/2017 21:48

I'm so sorry to hear what you are going through with your dh. It's such a horrible disease.
I think you are doing the right thing by taking time off work to look after him. You aren't going to look back and wish you'd worked more. I have only very recently went through this with my ex p , father of my ds.
Feel free to pm me if you want someone to talk to.

YellowCrocus · 09/02/2017 21:56

I'm really sorry to hear what you are going through. My mum died of cancer of the oesophagus, it's a horrible condition. She went downhill very fast and I wasn't at all prepared for the end, although I knew it was coming. Take your time at home, be with your DH. A job is a job. You won't get this time back. I don't think I could cope with the enormity of what was happening to my family so I spent my time fretting about the other things. None of them really matter. Wishing you the best. x

Chasingsquirrels · 10/02/2017 09:04

Thank you all.

I'm popping into work for an hour or so today just to brief someone on some specific things, but feel much relieved since I made the decision last week and effectively handed over responsibility on Monday & Tuesday.
I think as well as the time aspect and being away from DH it was the responsibility for work which was weighing on me so heavily.

We saw the consultant and senior palliative care nurse at the hospital earlier in the week and had what felt like a quite positive meeting in terms of symptom support & strategies. The main thing is sleeplessness at night leading to him dozing most of the day which is a vicious circle. But also stomach and intestine pain and some back pain. Plus tinnitus from the chemo which he describes as agonising at times.

The hospice also called yesterday and they are coming out to do a home visit over the next week or so.

He seemed to sleep better last night, and seems a bit brighter this morning.

OP posts:
echt · 11/02/2017 05:34

I hope the hospice visit goes well, Chasing

Thinking of you. Thanks]

Chasingsquirrels · 11/02/2017 10:59

@echt thanks your for your post. I've also though of you over the past month.
Flowers back.

DH has been sleeping a little better at night the last two nights, and was awake for most of the afternoon & evening yesterday - which improves things no end.
Severe lower intestine pain this morning which was eventually relieved by a bowel movement (the things serious illness lead you to discussing) and he's now gone back to sleep.
Hoping to get out for a while later.
Hospice doing an initial assessment home visit on Monday afternoon.

OP posts:
Chasingsquirrels · 11/02/2017 11:00

Past months (not month).

OP posts:
madroid · 13/02/2017 05:50

Hope it goes well for you both Chasing. Hope the hospice help to improve DH's symptoms but glad he's slept a little better.

I think you've made the right decision re work after what sounded like heroic efforts to keep it all going for so long. You can only do so much and now your priorities have shifted. I think there's only so much worry we can cope with, and right now thoughts of returning should go on the back burner.

But being at home full time means that it's important you plan some breaks for yourself, even if that means 20 mins in the bath or a 10 min walk in the garden. Accept all offers of help and try to rest and relax if you get some time off. It's very tough, so try to look after yourself too Flowers

Chasingsquirrels · 13/02/2017 17:32

Thanks madroid.

Had meeting with Hospice nurse and she is coming back next week.
Talked about various things including symptom control, alternative therapies (Dh had some acupuncture last summer, and we are going to explore that again for sleep), finances & blue badge, family support for kids etc.

OP posts:
Chasingsquirrels · 15/02/2017 11:37

DH has had a couple of bad nights, and days with quite a lot of pain and tinnitus and headaches. He slept a bit better last night. He is so thin, and so tired and just worn out. It's just so bloody sad.

OP posts:
Somerville · 15/02/2017 11:48

Sorry to hear that he's had few more bad nights, Chasing.

Yes it is so, so sad. Sad

I'm glad you're off work right now to spend time with him. I did a lot of reading aloud (at little more than a whisper) to DH at a similar stage, when his head was too bad for us to listen to music. Just trying to find bits of our prior normality amidst his pain and all the emotions. My memories of those times are very precious to me now.

Chasingsquirrels · 15/02/2017 21:52

Thanks Somerville x

OP posts:
Somerville · 15/02/2017 22:08

How is he tonight?

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