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Process and pain of dying with esophagus cancer?

24 Jan 2018 10:16

Good morning  All.

Firstly, sorry if I am on the wrong part off the site I am just totally lost. My mother went into Hospital on the 30th December and she is still in. On Thursday 18th I was advised she has Stage 4, Advanced, Oesophagus cancer. I am in the processes of trying to get everything put into place for her. She wants to go home as part of the pallative care and end her days at home. I am trying to get my head arouond this and  be strong for here. I have asked the Docs if they can advise a rough expactancy of live, however, Docs unable / unwilling to advise. Does anyyone have an idea on timescales. I know it has spread to the lymph modes and also more than likley her liver as the doc advised on the shaddowing on there too but not to be too worried about that. I just need to try and esbalish a rough life expepancy so I can try and come to terms with this and try to deal with it.

 

Process and pain of dying with esophagus cancer?

24 Jan 2018 10:51 in response to SFitzgerald

Hello, 

I am incredibly sorry about your poor Mum and to you for what you're facing ahead of you. 

Don't apologise, I'd say you have posted in the correct part of this site. I can't offer much advice so I hope someone will come along soon and is able to help you more than I can. 

I'd say usually at this stage the Doctors should be able to tell you roughly how long your mother has left to live. Have you spoken to your local hospice team they may be able to give you a better insight than say your mothers oncologist? We found the hospice team were much more helpful in answering these sort of questions and supporting us than the doctor. 

We was in this situation last year when my Dad's cancer then turned terminal. We had hospice nurses coming in a couple of times a day as it was classed as 'hospice at home' as my mum didn't want him going into the hospice itself as it was a fear of his to ever go into one. But he took a funny turn and we decided to take him to the hospice so they could adjust his medication etc. They told us he wouldn't be coming home and had days to live. But he carried on and on and was eventually allowed back home. The hospice nurses then came in 4 times a day and my mum was allowed 2 night sits a week so she could get some proper sleep. So bare this in mind if you are caring for your mum that night sits should be available to you, every little helps. Like you I wanted to know how long my Dad actually had, whilst we knew he was 'dying' I wanted to prepare myself. Was there going to be signs the end was near or was it just going to happen unexpectedly like in his sleep? I did read up on the end of life symptoms so I could look out for these. And some of them my Dad already had months prior so it wasn't that helpful at the time. About a week before he died that's when I started noticing a few more signs so that helped in knowing the end was very near. These signs were things like hardly drinking at all, finding it hard to swallow food and liquids so a sponge was used on his mouth to keep it wet, sleeping loads more etc. Then the day he died it was extremely obvious that this was it. 

 

Big hugs to you 

Process and pain of dying with esophagus cancer?

24 Jan 2018 11:21 in response to Butterfly89

Many thanks for the reply.


I have asked the question to the doctors a few times now and they are unwilling even to estimate a timescale. This does not help in the slightist. 

Mum wants to come home for the same reasons you mention above, however, this morning  I have personally contacted the local hospice and just asked some basic questions about if she changes her mind as from what I have read this can be a painful ending without the right care and support around her.

 

 

Process and pain of dying with esophagus cancer?

24 Jan 2018 11:40 in response to SFitzgerald

We personally wouldn't of changed where my Dad died. You get the same level of care and support at home as you would being in the hospice. But I understand not everyone has the same experience. My dad had no pain as they fitted him with a syringe driver and would give him morphine so he was always completely relaxed. The nurses who come in will not only change the bedding and wash the patient but they will also make sure the person is comfortable and willy carry out the appropriate measures if needed. But it is a personal choice and it can be stressful to care for a loved one at home and your mum will need 24 hour care. It is good if any care can be shared as it is a stressful situation. Obviously being in a hospice she will get that 24 hour care and you can even stay at the hospice some nights if you didn't want to leave her or if she became really poorly. Its good to weigh up the pros and cons and overall what would be best for your mum but also you. You matter too if you are the only who will be doing all or most of the caring. 

Process and pain of dying with esophagus cancer?

24 Jan 2018 13:51 in response to SFitzgerald

Hi,

So sorry to read about your situation. 

With both my own cancer and my Mum's I found that the best way to get rough timescales from reluctant doctors was to ask "would you be surprised if ...?" My Mum asked "would you be surprised if I was still around at Christmas?" Dr - No, that wouldn't be a surprise. Mum - "Ok - what about our Wedding Anniversary next Summer?" Dr - yes, that would be a surprise. Mum "oh, b**ger!" 

Whatever you do, don't treat any timescales as gospel truth. I was told I had between 2 months and 18 months in October 2013  ... I'm now so glad I didn't cash in my life insurance and spent it on a holiday! An extreme example I know but it explains why they are so reticent to give even approximate time scales Happy

Best wishes and good luck

Dave

Process and pain of dying with esophagus cancer?

27 Jan 2018 23:43 in response to davek

I am very sorry x   My dad died 9 months ago from this type of cancer. He lived with his terminal prognosis for 2 years. There was no pain no distress at the end. He just became very poorly from an infection. We looked after him at home in his final days and the nurses visited to fit the syringe driver and monitor him. 

Process and pain of dying with esophagus cancer?

16 Feb 2018 17:07 in response to Dixon4

Many thanks fior all the replies. I have been busy sorting out the end of life care and trying to get some adult social care sorted for her too as 7 years previous Mum suffered a stroke which left her wheel chair bound. 

 

From peoples experiances which this type of cancer, can people please advise from there own experiances what are the tell tall signs I should be watching to see how mum cancer is progressing. Her voice has gone all horse again this happended prior to Christmas too and before the doctors advsied us she had Esophagus cancer is this just common and comes and goes or is it a sign the cancer is getting worse ? if not what are the standard signs that she is getting worse, she is a strong indipentant woman and won tell me if she is feeling any worse, all I get is I am ok...

Process and pain of dying with esophagus cancer?

17 Feb 2018 13:59 in response to SFitzgerald

Hi SFitzgerald, 

I'm sure our members will let you know what to look out for soon but in the meantime I just wanted to share some general information we have about what to expect in the last weeks and days. It may be quite hard to read in one go so only have a proper look if you feel you are ready to do so or have someone with you.

Our cancer nurses are just a phone call away if you would like to chat with them about your mum as well. They're available Monday - Friday between 9a.m - 5p.m on 0808 800 4040 so do give them a call next week if you think it will help talking this through with someone.

Best wishes to you and your mum, 

Steph, Cancer Chat Moderator

Process and pain of dying with esophagus cancer?

19 Mar 2018 13:40 in response to Moderator Steph

Afternoon All.

On Thursday of last week, I was given the news that Mums cancer had taken a turn for the worse. Prognosis 50/50 if she will last the next two weeks. On Friday she started on Steriods, these seem to have really perked her up. I know this is just masking over what it going on insude her body, just wondering if anyone else has seen this and if the Steriods actually do help slowing it down and buying us more time ?

Kind Regards

SFitzgerald 

Process and pain of dying with esophagus cancer?

19 Mar 2018 19:00 in response to SFitzgerald

Hi again,

I'm not a doctor, just a cancer patient, but steroids have several uses, their main use in your Mum's case may well be as an anti-sickness drug. I took them to help with chemo side effects.

I guess all you can do is hope for the best and plan for the worst.

Best wishes

Dave 

Process and pain of dying with esophagus cancer?

21 Mar 2018 11:59 in response to SFitzgerald

Im in the same situation as you my mom has now been told she has a brain tumour as well as cancer of osphoagus!!!!she to is now on steriods and sleeping a lot and to  top it now has chest infection.It was last April when first diagnosed and had stent fitted but no other treatment.I too feel lost best wishes Jackie x

Process and pain of dying with esophagus cancer?

14 Apr 2018 12:30 in response to tigerboy1976

Good afternoon all.

Just after three months of getting the news Mum passed away on Thursday 12th. We managed to get Mum away for a few days first at the seaside then as she was clearly going down hill fast, we got her home. This is where she passed as per her wishes. Now time to put practical head on and try get all the stuff sorted, wont be easy as she had no will, ex husband still on mortgage etc. 

Many thanks to all for your help/advise and support over these hard trying months.

Kind Regards

SFitzgerald

Process and pain of dying with esophagus cancer?

14 Apr 2018 14:32 in response to SFitzgerald

I'm so sorry to read that your mum passed away on Thursday SFitzgerald although I'm glad that you were able to take her to the seaside for a few days before things changed. 

It will be tough like you say, but remember that we are always here if you need us and I've included some information from our website about sorting out practical matters which I hope will prove useful.

My thoughts and condolences are with you at this time.

Kind regards,

Steph, Cancer Chat Moderator

Process and pain of dying with esophagus cancer?

14 Apr 2018 15:17 in response to SFitzgerald

Hi,

So sorry to read about your Mum's death, however much you are expecting this it is always a shock.

I'm glad you managed to get her home in time.

Best wishes

Dave

Process and pain of dying with esophagus cancer?

14 Apr 2018 23:01 in response to SFitzgerald
I am so very sorry to hear of your mum's passing x