Terminal oesophageal cancer progression

[cozydays]

Not really sure what I'm looking for on this post , if it's help, support or advice really , my brain is scrambled so much of the time.
My DH aged 55 was diagnosed with oesophageal cancer at the beginning of the year . Chemotherapy hasn't worked and has now spread to his liver.
His consultant gave a prognosis of 4-6 months due to the spread.
We are over half way through that timescale now and DH is now starting to decline .
We are under the care of the local hospice who have been supportive , ensuring his pain relief is managed but as the days go by , I can see him starting to get sicker.
I'm just not really sure what to expect and what the symptoms will look like and when to get others involved.
It's just so heartbreaking to watch him like this , he's lost so much weight and is shadow of who he used to be , we've been together over 30 years .
Has anyone got any experience of this terrible terrible cancer

Sorry no experience but

Half thinking I recognise you from your posts at the time with your 3 adult DDs?

Hugs x

My dad had this. It varies from person to person. Huge hugs to you x

My Dad died of this when he was 52. I am sorry that you are having to go through this. I hope you have family or friends to talk to. The hospice will be so helpful for you and give you guidance. If you want to ask me anything, you can x

Sorry to hear the Op. My dad also died of this. He was clearly ill but refused to get help until the last minute. It spread to his liver and lung. I got a call whilst in Sainsburys saying he/we had 4 hours. He lasted three more days. It was horrid. He was 65.

I'm so sorry your going through this.

It's a really difficult thing when they tell someone a prognosis, because you almost start watching the clock. Prognoses can be really difficult to get right and anything can change during palliative care as generally scans stop and it's a waiting game to see what happens.

If the hospice have his symptoms under control, then that is a good thing. As things progress, he may stop eating / drinking completely (this is distressing, but normal in end of life care).

Some things to think about - does he want to be at home when he dies? If so, make sure that the team who will be coming in daily to support with symptom management (like a syringe pump) know about him - that might be the hospice team, but it may also be the district nurses, and it's often a whole lot easier if you know who they are and how to contact them urgently if you are concerned. (I apologise if that sounds harsh or heartless, it's not meant to be at all)

IMO, it almost better if all the professionals who might need to be involved are aware sooner rather than later, because then you can get things in place (like injectable medicine, written up and in the house in case he needs it - that is much easier to sort during the week on a just in case basis than at 3am on a Sunday morning).
Other things to think about or ask he hospice about if they haven't yet is things like equipment - pressure relief for his bed, sheets to help him move in bed for example. These will make things easier.and more comfortable as time goes on.

I'm sending you strength. I am always in awe of the strength families have in these situations.

Finally, there is absolutely no such thing as a silly question - ask the professionals involved if there is anything you need or want to know. No one will mind giving you the time to answer questions, support you or put your mind at ease.

Couldn't read and not comment but don't have any useful words.

Life is so cruel.

X

A different cancer and my sister but the stage and uncertainty sound the same,

Thank you all for your kind words and advice .

DH has a special bed which they have supplied which he uses a lot , but still finds it hard to get comfortable, he also has a peg feeding tube but even with that has lost a lot of weight .

DH has said he's ok either staying at home or going into the hospice if it makes it easier for me . But it's not about me , it's about him and what's best for him , I will fit round him .

He's extremely tired most of the time now , and getting confused about things , but not too sure if that's due to the morphine and other medicines he's on

I'm sorry for anyone going through this wicked disease and the poor families that share the pain , it's not fair

my dad died of this when I was was 5. he was only in his 40s. It's a horrible disease I'm so sorry about your husband.

My sister has a ripple bed and sleeps a lot. She’s not on morphine so I think it’s the ‘disease load’ which is how it was described to me. She has mets in liver and spine. We don’t know about anywhere else because no further imaging arranged or planned, just palliative care.

Two BILs and a great aunt. It’s not rare is it?

Hope you have support IRL and make sure you are looking after yourself too. 💐

I'm so sorry that you are going through this cozydays.

I'm not sure whether to post my late-DH story. I've typed it out, then removed it to my clipboard. I will post it if you want.

I'd agree with others about getting help and support in place, both practical and emotional.

We used hospice @ home for a few nights at the very end which was invaluable.

It is utterly heart breaking.

@Chasingsquirrels

I'm so sorry that you are going through this cozydays.

I'm not sure whether to post my late-DH story. I've typed it out, then removed it to my clipboard. I will post it if you want.

I'd agree with others about getting help and support in place, both practical and emotional.

We used hospice @ home for a few nights at the very end which was invaluable.

It is utterly heart breaking.

Im sorry you have also had to go through this . I would really appreciate hearing your story please , Any experiences I can get at the moment I feel will help me deal with what is coming our way

I don't think anything ever really prepares us for what is coming, knowing isn't the same as going through. My heart goes out to you cozydays.

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Late-DH was diagnosed in April 2016, aged 57. At that point he already had liver mets. Diagnosis was 10-12 months with treatment. DH either couldn't, or chose not to, accept that and was determined he would survive it.
Chemo (May-Sep) reduced the rumours significantly, but they started growing again as soon as it finished. Radio (Nov) did the same.
He lost a lot of weight throughout, although he did try a cannabis oil treatment at the same time as the chemo - which helped no end with his appetite! Wouldn't recommend though.
He had declined significantly by late January 2017.
He had number of weeks of existing at home, he was increasingly frail & tired, couldn't really go anywhere or do much other than lie on the sofa / in bed.
He had a short hospice stay to try and manage symptoms and pain in late February / early March and then came home - we talked about this, he said the hospice would be easier for me, I said if he wanted to be at home that's where I wanted him (I wanted him at home, but it was his choice).
OH @ the hospice sorted a hospital bed etc at home.
We thought it would still be some time (as did the doctors) but once home he declined rapidly, was on a morphine pump after another week or so, and died less than a week after that.

@Chasingsquirrels

I don't think anything ever really prepares us for what is coming, knowing isn't the same as going through. My heart goes out to you cozydays.

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Late-DH was diagnosed in April 2016, aged 57. At that point he already had liver mets. Diagnosis was 10-12 months with treatment. DH either couldn't, or chose not to, accept that and was determined he would survive it.
Chemo (May-Sep) reduced the rumours significantly, but they started growing again as soon as it finished. Radio (Nov) did the same.
He lost a lot of weight throughout, although he did try a cannabis oil treatment at the same time as the chemo - which helped no end with his appetite! Wouldn't recommend though.
He had declined significantly by late January 2017.
He had number of weeks of existing at home, he was increasingly frail & tired, couldn't really go anywhere or do much other than lie on the sofa / in bed.
He had a short hospice stay to try and manage symptoms and pain in late February / early March and then came home - we talked about this, he said the hospice would be easier for me, I said if he wanted to be at home that's where I wanted him (I wanted him at home, but it was his choice).
OH @ the hospice sorted a hospital bed etc at home.
We thought it would still be some time (as did the doctors) but once home he declined rapidly, was on a morphine pump after another week or so, and died less than a week after that.

Thank you for taking the time to share your story . I'm so very sorry for your loss. DH situation is quite similar . No hospice visits yet though. He has spent most of the day dozing on and off , but more than usual . I hope and pray he doesn't suffer as we go down this journey

so sorry OP.
my own darling one was taken by this horrid disease, well it was the pneumonia or another infection in the end actually.
i felt so bad, because it seemed to put a barrier between us. he didn't seem to understand the implications of the situation. i wasn't sure if he was above it all, less perturbed than i was because he was more spiritual, grounded, integrated, or that he was innocent like a child. either way, how could i want to pull him down to the misery i felt. yet we had always been so open before, i could tell him anything. and now i couldn't. and i wondered if he felt it, the barrier. i felt fraudulent. and useless.
sorry. he knew i loved him. wish i could have got him to a hospice or away from the hospital. they literally threw his slippers at me a few minutes after he died. like so much rubbish.
glad you have the hospice support.
so sorry. what is love.

My DF very recently passed of this, by the time it was diagnosed it had spread to numerous places and sadly he died very quickly, we were blessed that he was in no pain and with the help of palliative care nurses he was able to stay at home which is what he wanted and was with my DM.

I'm so sorry you are going through this sending strength.

I am so sorry you and your partner are going through this. My dad had oesophagus cancer and sadly died aged 53 this was 20 years ago. It's such an awful cancer and it took my dad really quickly he was diagnosed 23rd December and by the end of the following June he had passed away.

My DH was diagnosed with the same cancer in April of this year. He died very quickly but it wasn't an easy journey for any of us @cozydays I'm so sorry you are facing this. I hope you have a more supported journey than we had xxx

My grandmother died with Oesophageal cancer at a relatively young age. By the time it was diagnosed (despite barn door symptoms for years), it was untreatable and she had a stent to allow her to swallow.

I'm so sorry @cozydays I can't imagine how hard it must be for you.

I’m so sorry you are going through this and to read everyone else’s story’s. My Dad died of this as well, it’s a horrific disease.

Dad died at home with a huge amount of support from GP, district nurses and the local hospice who provide Hospice @ Home support. Initially he and Mum were slow to contact outside help as they didn’t want to make a fuss - I may have interfered at this stage! Like a PP iliketeaagain? said, I’d make contact with hospice/GP/district nurses before you need them.

Just wanted to add my support and say how sorry I am for you and your DH OP.

I lost my stepdad last year to laryngeal cancer, which I appreciate isn't the same, but the decline was similar. Unfortunately in his case the tumour had attached to a carotid artery which increased the speed at which it grew. He spent his final two weeks in a hospice and it was heartbreaking, but the staff couldn't have been more helpful and it was definitely the best place for him to be. They provided fantastic support to my mum too.

I hope when the time comes your DH is peaceful

I'm so sorry you are having to witness your OH experiencing this cruel disease. I've seen patients in early stages of this diagnosis have radical surgeries and wonder if all their pain and life altering postoperative changes are worth it? Sending you

I'm so sorry you're all going through this at the moment. Having experienced similar with my grandparents and my in laws, I would say there is no right or wrong answer.

In the current circumstances I would want to know that the hospice were operating normally in terms of loved ones visiting, and no restrictions on who/how many can visit particularly if you have children who want to spend time with their father.

Apart from that, pain relief can be managed at home, but it can be easier in a hospice when increases can be made instantly rather than waiting for a nurse to visit, and medication is not your concern so you will not be visiting pharmacies trying to find something that is in short supply. It all depends on what you as a family decide is right, but as I said previously, there is no right or wrong answer, what ifs will always be there whichever one you all choose and they are very rarely of any benefit to dwell on them. Please ensure that you all take advantage of the support the hospice can offer you, loved ones can always get support and counselling from them and it can really help.