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Original poster

Oesophageal cancer ?

29 replies

ShellySarah · 26/08/2023 20:42

My mum has it. Stage 4 as already spread.

They aren't offering chemo or radiotherapy as there's no point at her age, she's late 70s and it spread a lot.

She isn't in pain. What can I expect as the end nears?

She's in denial.

Thanks

OP posts:
Chicoandchunky · 26/08/2023 20:49

I'm so sorry to hear this, and I totally get needing to prepare yourself for what is ahead. My dad died of a different cancer, many years ago, and I found the Macmillan helpful for talking me through it.

I have sadly known two people who had same as your mum. The main issue was keeping food down, and having a lot of acid reflux. They pretty much just stopped eating. The closest family member didn't have much pain, was just sick and stopped eating, so was very weak.

Wishing you well.

Original poster
ShellySarah · 26/08/2023 21:03

Yes that's what's happened to my mum. She just doesn't want to eat but she won't feel like eating with that. She has IV omeprazole every day

Can you just contact Macmillan?

OP posts:
Chicoandchunky · 26/08/2023 21:07

They had a phone line, but that was a while ago. Worth a try.

fridaseyebrows · 26/08/2023 21:08

So sorry to hear this.

My grandmother had the same, at a similar age and it was palliative treatment as well. Her pain was always pretty much under control. But she struggled with eating and drinking, and as time went by she couldn’t manage anything at all. She gradually got weaker and weaker. It seemed to me like she faded away almost. She stayed at home the whole time, we had a fantastic district nurse come out to her and also a wonderful carer who came in - but my mum did most of the looking after.

I totally understand wanting to prepare yourself. My grandmother lived with us and the first things we looked at were practical stuff like moving her bedroom downstairs and closer to bathroom (her room was at the opposite end of the house), then we reconfigured the bedroom to make sure there would be space to get around the bed for helping her in and out etc. Things like that.

I would also say make sure you think about looking after yourself too. It took a huge toll on my mum. She took a sabbatical from work so she could be there to look after her at home full time, but as an only child didn’t have any other respite or any one else to relieve her (I was living abroad and my sibling away at university so not around as often as we would have liked).

A horrible experience to go through. I agree with PP places like MacMillan etc can be a huge support.

rileynexttime · 26/08/2023 21:12

I think it must vary as we're all different but fwiw my twin brother died of this . Early 70s.
He lost weight, didn't eat. Tired obviously. Not a great deal of pain .
Was in a hospice for about a week before he died but was relatively ok at home up until the last 2 weeks . Not bed bound .
He was quite agitated and disorientated during the last days in the hospice.

TinkerbellefromYorkshire · 26/08/2023 21:13

My Granny died of these but many years ago.. she had a tube fitted for feeding and trachea fitted.
I was only 14 when she passed ..I'm now 64.
Gosh 50 years ago.. so l guess things were very different. She had radiotherapy..but hated it.
My Mum looked after .. can't remember any mcmillian then..my mum was shown how to tube feed her.
She couldn't speak.. so wrote everything down.. l learnt to lip read.
I'm so sorry this is happening to you and your Mum.
But my lovely friend ( my first b/f l kissed) and became friends in later life had jaw cancer and the mcmillian nurses and hospice were fantastic. Sending you love and hugs.

43ontherocksporfavor · 26/08/2023 21:14

Gosh I’m sorry . DM died from a different cancer. Once eating stopped it was days/weeks. Please don’t force eating, bring music, smells , foot/ hand rubs and anything that may soothe her and above all, say what you need to say sooner rather than later. Take care of each other.

Original poster
ShellySarah · 27/08/2023 11:06

I don't force eating but the HCAs do. I buy her yoghurts and things she likes and she eats them or not it doesn't bother me.

She is still in hospital but they want to discharge. I cannot be her carer or take a sabbatical. Full time professional career and a massive project and new staff to train in the next 6 months.

I'm not sure what to do. Only have one other sibling who is not helpful and won't lift a finger.

I'm glad she won't hopefully be in much pain. That's some comfort.

OP posts:
Thebeachut · 27/08/2023 11:12

So sorry
My dad died from this last year
His cancer had spread to his liver so in his case the main symptoms at the end of life where jaundice, ascites, tumour in the oesophagus at this point made swallowing even liquids impossible in the last week or so of his life and really horrible indigestion.
He just gradually got weaker and weaker until he died really. The death rattle happened in the last day of his life.
He was pretty responsive until two days before he died and when asked if he was in any pain he always said no or shook his head to us
He was agitated towards the end to but unfortunately they say people with liver failure/cancer in the liver that is often a symptom of that as chemicals go all funny in the blood and not because he was in pain.
Take care of yourself as much as you can
So sorry op

Original poster
ShellySarah · 27/08/2023 11:15

She's in denial she is dying and is talking about recovering so I can't have the conversations I need to with her.

I'm struggling to act as if she is going to recover and go back to normal. It's how she is dealing with it.

OP posts:
Mosaic123 · 27/08/2023 11:18

My cousin in her 70s died of this last year. On the morning of a consultant visit she had a stroke and was then in hospital for a week. They put a feeding tube in. She took it out more than once and her family asked that it wasn't put back in. She died a few days later.

I don't believe there was much pain. Always a very organized person, she spent time before her stroke making arrangements for after her passing which made things easier.

I wish you strength.

rileynexttime · 27/08/2023 13:33

@ShellySarah Your Mum might not need much physical support. My brother didn't need any personal care until the last 2 weeks in a hospice.

Floofydawg · 27/08/2023 13:49

Sorry to hear this. My dad died of the same 9 years ago. It was very quick, around 5 months from diagnosis and that was with chemo (which didn't work unfortunately).

I remember the hospital giving him calorific shakes to drink as he struggled to eat.

Muchtoomuchtodo · 27/08/2023 13:54

So sorry op.
Macmillan and Marie Curie can be great sources of support and information.
it’s tricky if she’s in denial but does she have a will that she’s happy with and can you discuss power of attorney if you don’t already have it?
Trying to discuss her wishes for her funeral would also be helpful.

Original poster
ShellySarah · 27/08/2023 23:57

rileynexttime · 27/08/2023 13:33

@ShellySarah Your Mum might not need much physical support. My brother didn't need any personal care until the last 2 weeks in a hospice.

She's immobile. Can't get put of bed unaided

OP posts:
Original poster
ShellySarah · 27/08/2023 23:58

Muchtoomuchtodo · 27/08/2023 13:54

So sorry op.
Macmillan and Marie Curie can be great sources of support and information.
it’s tricky if she’s in denial but does she have a will that she’s happy with and can you discuss power of attorney if you don’t already have it?
Trying to discuss her wishes for her funeral would also be helpful.

No will. No POA and won't talk about funeral plans. Complete denial.

OP posts:
Original poster
ShellySarah · 27/08/2023 23:58

Floofydawg · 27/08/2023 13:49

Sorry to hear this. My dad died of the same 9 years ago. It was very quick, around 5 months from diagnosis and that was with chemo (which didn't work unfortunately).

I remember the hospital giving him calorific shakes to drink as he struggled to eat.

She won't even drink the shakes. She doesn't like them.

OP posts:
Findyourneutralspace · 28/08/2023 00:03

The McMillan nurses were a huge help to my mum when my stepdad had this. He was very tired and couldn’t cope with too much in the way of visitors, but just kind of slowed down.
Sorry OP, it’s not nice at all 💐

Counciltelly · 28/08/2023 00:15

my dad was like this. Same cancer. Initially said he’d get his affairs in order then never looked at a thing. He ate custard and yoghurt etc but really just faded away and kind of lost the will or the energy to interact with us. He wouldn’t drink the shakes )they are foul) and would intermittently stop drinking too. He had a feeding tube later which was better. I don’t think he could be arsed eating bland runny things so he didn’t bother eating anything at all to some extent.

theothermichelle · 28/08/2023 00:16

I’m very sorry for you and your mum! My lovely mum passed away from this type of cancer, she only had three weeks to live after diagnosis. I have heard of many similar outcomes since, so be prepared for speed. It must be very difficult if your mum is not able to talk about what lies ahead, must be so hard for you all

rileynexttime · 28/08/2023 07:09

@ShellySarah I'm so sorry, your situation sounds beyond hard.

There will need to be care in place before your mum is discharged and the hospital and social services will be responsible for arranging this.

43ontherocksporfavor · 28/08/2023 08:45

That’s so hard Op if your DM is talking of recovery. The doctors came to see my mum to check that she understood what was happening. But that was the day before she died.

Original poster
ShellySarah · 29/08/2023 07:11

She's also refusing a care home / hospice knowing that it will fall on me.

She's also called me a cold blooded bitch for not wanting to be responsible for her when I have a full time professional job and work long hours.

I know she is ill but I struggle with being spoken to like that regardless.

I love her but I can't be a carer. I need to work. I can't neglect my own life or it will be harder to pick up the pieces when she does pass.

OP posts:
lemondust000 · 29/08/2023 07:20

ShellySarah · 26/08/2023 21:03

Yes that's what's happened to my mum. She just doesn't want to eat but she won't feel like eating with that. She has IV omeprazole every day

Can you just contact Macmillan?

Yes if they have them locally in the community where you are. Where I am they don't have Macmillan anymore - BUT - they have the equivalent doing the very same job under the umbrella of the local hospice. If there is a hospice community team near your mum you can refer her yourself. It will be a vital resource. Your mum will get very thin and weak. She should be symptom controlled and kept comfortable however. They should be able to stent an oesophageal stricture (narrowing) for symptomatic relief. I'm sorry about your mum.

Original poster
ShellySarah · 29/08/2023 07:42

They've already put a stent in. She had let it go on so long it took 2 attempts to get it in. It was so narrow. She was burying her head in the sand about being ill.

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