Nicknacklou #13 We have now entered Black Mirror territory

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katesbess said:
Sorry but you don't no this.
You don't no what he stance is now. Of course she has t "quite said.
Stopping treatment can mean all sorts. And it can last for longer that you mention.
Just like palliative can be years.
And yes my friend was terminal and had to have a syringe drive because he reacted so severely to the chemo he just could not orally take it in. And needed the medication badly. So he went on one. Still here.still palliative.still terminal. Has been at what we all thought eol bleeping twice and pulled through.and it's been horrific both times!
Stopping active treatment can mean many things to the individual.
Also another lady was on eol driver. Driver came out she was going for another 129 days before die in the end. She needed 24hour medication though,hence the driver for a time.
A driver is a scary thing. And people saying it means eol fuels that fear. When actually being put on a driver doesn't always mean your going to die. It's for consistent medication over 24hours. So is incredibly helpful.expecially when people are anxious,weaker etc. It's also incredibly helpful for getting people home. Instead of in and out of hospital. Some people can be incredibly hard for managing pain, getting them on an even keel when they are up and down healthwise is hard. And them being in and out of the hospital setting just becomes distressing. And makes the whole illness feel worse. A driver keeps them stable.gets them home.
It's one of the most commonly asked ,and biggest worries for people so let's not fuel that.
Of course It could well be for nn.
But people have examples of otherwise.
Click to expand...
Yes drivers are used for controlling pain, but in Nickys case, with her disease, the spread to liver, the issues with her bloods etc - she hasnt got 4 months left in her like the person you’ve mentioned above had.
 
katesbess said:
Sorry but you don't no this.
You don't no what he stance is now. Of course she has t "quite said.
Stopping treatment can mean all sorts. And it can last for longer that you mention.
Just like palliative can be years.
And yes my friend was terminal and had to have a syringe drive because he reacted so severely to the chemo he just could not orally take it in. And needed the medication badly. So he went on one. Still here.still palliative.still terminal. Has been at what we all thought eol bleeping twice and pulled through.and it's been horrific both times!
Stopping active treatment can mean many things to the individual.
Also another lady was on eol driver. Driver came out she was going for another 129 days before die in the end. She needed 24hour medication though,hence the driver for a time.
A driver is a scary thing. And people saying it means eol fuels that fear. When actually being put on a driver doesn't always mean your going to die. It's for consistent medication over 24hours. So is incredibly helpful.expecially when people are anxious,weaker etc. It's also incredibly helpful for getting people home. Instead of in and out of hospital. Some people can be incredibly hard for managing pain, getting them on an even keel when they are up and down healthwise is hard. And them being in and out of the hospital setting just becomes distressing. And makes the whole illness feel worse. A driver keeps them stable.gets them home.
It's one of the most commonly asked ,and biggest worries for people so let's not fuel that.
Of course It could well be for nn.
But people have examples of otherwise.
Click to expand...

Yes, it's a very effective way of delivering continuous pain relief which can be adjusted easily. It's not helpful to associate syringe drivers with imminent death. They can also improve quality of life.
 
I think because of nickys progression, her bloods being unstable it's not just pain management to get her through for a long period of time. If it was only pain I would agree the driver probably could manage that for her for a while but her bloods were floored which is why she was in hospital.
With her bloods so low would she be more prone to picking up infections that perhaps she couldn't fight?? I'm not sure what was low but also is a factor to considerwe can speculate all we want but we don't actually know what's going on now, and how long she has left.
 
katesbess said:
Sorry but you don't no this.
You don't no what he stance is now. Of course she has t "quite said.
Stopping treatment can mean all sorts. And it can last for longer that you mention.
Just like palliative can be years.
And yes my friend was terminal and had to have a syringe drive because he reacted so severely to the chemo he just could not orally take it in. And needed the medication badly. So he went on one. Still here.still palliative.still terminal. Has been at what we all thought eol bleeping twice and pulled through.and it's been horrific both times!
Stopping active treatment can mean many things to the individual.
Also another lady was on eol driver. Driver came out she was going for another 129 days before die in the end. She needed 24hour medication though,hence the driver for a time.
A driver is a scary thing. And people saying it means eol fuels that fear. When actually being put on a driver doesn't always mean your going to die. It's for consistent medication over 24hours. So is incredibly helpful.expecially when people are anxious,weaker etc. It's also incredibly helpful for getting people home. Instead of in and out of hospital. Some people can be incredibly hard for managing pain, getting them on an even keel when they are up and down healthwise is hard. And them being in and out of the hospital setting just becomes distressing. And makes the whole illness feel worse. A driver keeps them stable.gets them home.
It's one of the most commonly asked ,and biggest worries for people so let's not fuel that.
Of course It could well be for nn.
But people have examples of otherwise.
Click to expand...
Don’t understand why you seem so confrontational and have pulled apart what I’ve said yet ignored everyone else’s comments regarding drivers when their posts are basically the same as mine ???
This is the second time you’ve done this so I’ll try and make my thoughts very clear so you won’t feel the need to reply AGAIN !!!

You have explained your experience with drivers and I’ve explained mine - no need to keep disagreeing with what I’m saying. The experience you have is also the exception to the rule as majority of people do not have a driver removed.

You’ve said - “it can last longer than you mention” ??? What takes longer ? If u mean how long my dad
was on a driver before he died it’s a ridiculous thing to disagree with me over, it’s factual and it’s what happened - absolutely everyone is different and everyone’s experience and illness is different but if u go back and read what I said I have never mentioned how long I think NNL will be on a driver for or if it’s going to be used until the end or as a stop gap - NO ONE knows exactly what’s going on with NNL because she is so vague in her posts but the reality is she’s not on any active treatment, her mets have spread, her bloods are completely unstable, there’s no treatment routes available to her and the only active treatment is pain relief etc via syringe driver.

You also said something about me fuelling people’s biggest worries about syringe drivers -don’t know how I’ve done that as I only spoke of my experience and so have other people on this thread who have had similar experiences when their loved ones have passed shortly after having one fitted. I didn’t say everyone dies within 24 hours - I said my dad did
Now I’ve cleared that up please go find some other persons posts to comment on i really don’t want to have to reply to you again
Londonlady68 said:
Yes, it's a very effective way of delivering continuous pain relief which can be adjusted easily. It's not helpful to associate syringe drivers with imminent death. They can also improve quality of life.
Click to expand...
Just to clarify - in MY experience my dad died very quickly after having a driver fitted.

We didn’t think he would die that quickly. He was in pain, anxious and agitated and tablets and injections weren’t helping.
He was dying and could have lived for days, weeks and possibly up to 2 months but as it happened he died very shortly after having driver fitted

I don’t get how you can accuse me of associating syringe drivers with imminent death - it was his illness that killed him not the fact he was on a syringe driver
 
itsonlymexxx said:
Don’t understand why you seem so confrontational and have pulled apart what I’ve said yet ignored everyone else’s comments regarding drivers when their posts are basically the same as mine ???
This is the second time you’ve done this so I’ll try and make my thoughts very clear so you won’t feel the need to reply AGAIN !!!

You have explained your experience with drivers and I’ve explained mine - no need to keep disagreeing with what I’m saying. The experience you have is also the exception to the rule as majority of people do not have a driver removed.

You’ve said - “it can last longer than you mention” ??? What takes longer ? If u mean how long my dad
was on a driver before he died it’s a ridiculous thing to disagree with me over, it’s factual and it’s what happened - absolutely everyone is different and everyone’s experience and illness is different but if u go back and read what I said I have never mentioned how long I think NNL will be on a driver for or if it’s going to be used until the end or as a stop gap - NO ONE knows exactly what’s going on with NNL because she is so vague in her posts but the reality is she’s not on any active treatment, her mets have spread, her bloods are completely unstable, there’s no treatment routes available to her and the only active treatment is pain relief etc via syringe driver.

You also said something about me fuelling people’s biggest worries about syringe drivers -don’t know how I’ve done that as I only spoke of my experience and so have other people on this thread who have had similar experiences when their loved ones have passed shortly after having one fitted. I didn’t say everyone dies within 24 hours - I said my dad did
Now I’ve cleared that up please go find some other persons posts to comment on i really don’t want to have to reply to you again

Just to clarify - in MY experience my dad died very quickly after having a driver fitted.

We didn’t think he would die that quickly. He was in pain, anxious and agitated and tablets and injections weren’t helping.
He was dying and could have lived for days, weeks and possibly up to 2 months but as it happened he died very shortly after having driver fitted

I don’t get how you can accuse me of associating syringe drivers with imminent death - it was his illness that killed him not the fact he was on a syringe driver
Click to expand...
I haven't accused you of anything. I just stated that not everyone will die shortly after having a morphine syringe driver started. I accept this was the absolutely the case for your father.
In Nicky's situation it's going to be cancer and the destruction of her body which will kill her.
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Londonlady68 said:
Yes, it's a very effective way of delivering continuous pain relief which can be adjusted easily. It's not helpful to associate syringe drivers with imminent death. They can also improve quality of life.
Click to expand...
And I was talking generally.
 
She hasn’t been online for days now. I’ve also noticed her mate Chloe Dixon hasn’t posted for 24 hours. Getting a horrible feeling that something bad has happened. I do think it would be extremely odd if her last post ever was her stuffing a doughnut in her mouth, but it wouldn’t surprise me either.
 
IMG_4380.jpeg


active online right now
 
Richip16 said:
Removing myself from this thread. Yes, she's done things wrong, but at the end of the day she is human and should be aloud to see out her final days in dignity without people critising/stalking for not 'posting'.
Click to expand...
I understand why you're going, but the thing is that NNL has ALWAYS posted, and she's got hundreds of thousands of people over there invested in her every move and worrying about her health. Hence I do actually think that someone, NOT necessarily her, of course, should keep all those people updated occasionally. Many of them have donated money to her fund, sent gifts, messages of support or whatever.
 
I do agree with this, I know it's been a heavy point of disagreement but I don't think her or Alex owe anyone anything at this point. Yes it may take seconds but I'm sure certainly on his part, his mind is not on that right now. She's dying, there's nothing more to say, do we really need a play by play of her final days/weeks? What else can we learn at this point? When she sadly dies, it will be announced, until then it's just excessive grief tourism IMO.
 
jackolantern said:
I do agree with this, I know it's been a heavy point of disagreement but I don't think her or Alex owe anyone anything at this point. Yes it may take seconds but I'm sure certainly on his part, his mind is not on that right now. She's dying, there's nothing more to say, do we really need a play by play of her final days/weeks? What else can we learn at this point? When she sadly dies, it will be announced, until then it's just excessive grief tourism IMO.
Click to expand...

Why post anything at all? They really don't have to. Why are they still posting if it's not for engagement?
 
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