Chemotherapy, PEG feeding and a million other questions .....

Tender Face

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Mar 14, 2006
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Thanks all for your wisdom ... there is no doubt there will be a formal complaint at least and will come back to this thread just to come back to all the advice never mind boring you all with updates :eek: - but right here and now - I am wiped out with the prognosis followed by the trauma of yesterday's events ....... and trying to save all my energy for tomorrow's consultation at Christie's ......With mum still in considerable pain (should there be so much pain?) we have an 8am start from the ward tomorrow for the Christie's appointment, not expected to return til late afternoon at best (due to ambulance transport) ...... and my main worry right now is how mum will cope with the whole 'event' - the transport- the waiting about - after weeks of doing no more than shuffling five yards or so from her hospital bed ..... it makes the timing of the PEG procedure even more bizarre? :confused:

Even before reading some of your comments I had decided this morning NOT to take up the option of speaking to the doctors today. Apart from anything else I think I need some 'anger management therapy' before I'm let loose on them :rolleyes: .... I have saved my dialogue for the nursing staff - who are as wonderful as ever and appear embarrased if not astounded at what has happened themselves ....... totally agree with ideas that the 'formal route' is the best one ......

Just to give you a wry smile I should tell you I was asked 'if' I would like to accompany mum tomorrow? How the hell they think she could physically or mentally manage this on her own? ..... let alone be able to answer questions validly at a consultation .....Tells me everything about their not understanding and why this is absolutely a case of 'abuse' (assault/barbaric/inhumane etc etc) ...... How stupid I thought with the cancer taking over, the dementia issues would be almost peripheral!!!!!!!

Down, but not quite out .....

Thank you all so much, love, Karen, x
 

Tina

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May 19, 2006
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Simply astounded at all these developments, Karen, and agree with all others who say "formal written complaint"...it just all beggars belief.

Wishing you strength for the consultation tomorrow and hope mum will manage. Is she on any meds to manage the pain? I remember when Aunty Jean had PEG fitted, she didn't seem to be in considerable pain, but definitely uncomfortable for a day or two.

Thinking of you,
love Tina x
 

Skye

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Aug 29, 2006
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Dear Karen

You are not boring us with updates!!!!!!!

I know I at least am concerned for you and your mum, and wait anxiously for your post. I'm sure many more people feel the same.

I hope tomorrow goes as well as it possibly can for you both, and please let us know how you get on.

Love,
 

sue38

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Mar 6, 2007
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Karen,

I agree totally. I also think you are right to formulate your thoughts in a rational and controlled manner before pursuing the matter formally. To say in a calm way "I was very distressed/angry/appalled etc at the way you rode roughshod not only over my mother, but over the wishes and concerns of her family" ... or whatever... makes far more impact than to go in there screaming like a banshee "you b******ds!" Not that I'm suggesting you would, but it would be my first reaction.

I guess your first concern is tomorrow and getting your mum through what may be a very tiring day for both of you. I hope it goes well, in all senses. I will be thinking of you both.
 

Cate

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Jul 2, 2006
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Hi Kaz

I hope tomorrow goes OK for you both, and by morning mum's pain is under control. It obviously going to be a long day, so I would ask that the Ward give you some pain relief to give to mum if necessary during the day.

I hope that they dont keep you hanging around for hours waiting for transport, and it all goes smoothly. Im obviously wishing for a good outcome for you both too.

If you feel up to it, please let us know how it went.

Love & hugs
Cate xxxx
 

Tender Face

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Mar 14, 2006
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... makes far more impact than to go in there screaming like a banshee "you b******ds!" Not that I'm suggesting you would, but it would be my first reaction.

:D

Oh but it works sometimes?;):)

Oh, to sleep ....... :(

Thanks for all the good wishes, xxxxxx
 

hendy

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Feb 20, 2008
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Dear Karen
I was dumbstruck that you, as family, were not consulted when the medics made their decision. I hope that the visit to Christies brought some kind of reassurance. You had every right to be worried and apprehensive about the visit, and about how much you mum would understand of the consultation.

Reading your post I recalled the moment, after dads most recent admission, when I tried to make my wishes known to staff about Dad receivng lifesaving emergency treatment(should he 'crash'). The nurse was very blunt, she said 'its not your decsion, the doctormaytake your views into account, but it would be up to them' I do hope you get a full explanation about how they arrived at their decsion. How important it is that we keep out loved ones pain free and by our actions, do not add to their confusion. I wish hosptial doctors could show this kind of compassion more often.
take care
hendy
 

Tender Face

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Mar 14, 2006
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Mum's poor prognosis was confirmed today at Christie's. The first question asked of her by the consultant was 'How are you feeling generally?' and she couldn't even answer that - just looked at me so lost it broke my heart ......

Told the 'curative' suggestion was absolutely out of the question .... even 'palliative' (less agressive chemo) in terms of trying to shrink the tumour was not appropriate. In fact - there was so much conflict with what had been suggested earlier on in the week at mum's own hospital I am starting to wonder have scans and results got mixed up? Then again - I am going full cycle from grieving to cynical to downright angry within any given five minutes ..... Of course, this came as no surprise ... I had thought the suggestion bizarre in the first place .... but at least we've had that confirmed by a specialist oncologist and I know I've left no stone unturned ...... small relief ......

We moved on to 'quality of life' and discussion about hospital discharge ..... I mentioned mum had had a PEG fitted ..... 'Big decision' was the response .... 'It was without consent,' was mine ... raised eyebrows ........ I conceded it was not an issue for Christie's .....

A family friend is discussing the matter with solicitors tomorrow on my behalf (not looking for compensation - nothing can compensate for what mum has gone through unecessarily this week - just making sure we take complaints forward in the most effective manner to try to prevent this happening again to anyone) ....... while I concentrate on securing the best palliative care I can for mum ......

Nursing staff back on ward this afternoon tried to get into discussion that the PEG would prolong mum's life (I sense the defence barriers are already going up!) - I can only see that it will prolong her distress and enforce a longer period of suffering from what will be a cruel and horrid end of life ....... (not that Alz wouldn't have been) .......

As far as mum is concerned, I know there is nothing more I can do ..... other than ensure best care and to spend as much time as I can with her for however long we have ......... but the last thing I owe her, when I can pick myself up off the floor and find the energy, is to make sure 'heads roll' for the unnecessary anguish and pain she has been put through .....

Thank you all for your support through this terrible time.

Karen, x

PS: I was alerted to this new GMC document which may help anyone, God forbid they are ever faced with a similar situation ......

http://www.gmc-uk.org/guidance/ethical_guidance/consent_guidance/Consent_guidance.pdf
 

Cate

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Jul 2, 2006
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Newport, Gwent
Hi Kaz

I am so sorry that the last glimmer of hope has now gone. You are so right, all you can do now is ensure mum is as comfortable as possible, and share as much time together as you can.

I agree with you, all the PEG has done is prolong her suffering, and add in another complication of manageing that along with everything else.

The watching and waiting is heart breaking, but I hope you get to that 'quiet' place I now have in my head watching and waiting with my mum. All my anger of the unfairness has gone, I have that acceptance, and I just enjoy every minute with mum, I wish all of that for you too.

Love and hugs
Cate xxx
 

Grannie G

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Apr 3, 2006
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Dear Karen....................

.............I am so sorry you and your mother have been forced to endure unnecessary suffering.
I can only hope, with Cate, that you will eventually be able to find that `quiet place`, during this nightmare of a journey.
Love xx
 

Skye

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Aug 29, 2006
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SW Scotland
Dear Karen

So sorry that your mum's prognosis has been confirmed. I know it's what you expected, but that doesn't make it any easier to bear.

You're absolutely right to pursue the issue of the PEG, those guidelines make it absolutely clear that written consent must be obtained, and if there is any doubt about capacity the family's wishes must be followed.

But you're right, the important thing at the moment is to keep your mum as comfortable as possible. And that you have all the support you need to get you through this terrible time.

It sounds as if you have good and supportive friends to help you, and you know that we are here whenever you need us.

My love and prayers are with you, your mum and your family.
 

Lucille

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Sep 10, 2005
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Dear Karen

Just wanted to echo what everyone else has said. I know that you have done everything you can for your mum and the way she/you have been treated is truly shocking. I'm astounded and upset at the whole episode.

I know from having met you (albeit briefly) and from what I've read on here, that you are passionate about caring for the rights of people. I hope now that someone will give you a helping hand in terms of pursuing the health authority over the intervention your mum received.

Treasure the time you have. Will be thinking about you and your family.

xx
 

Canadian Joanne

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Apr 8, 2005
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Dear Karen,
I want you to focus on your mother now and treasure the time you have left.

Later you can

make sure 'heads roll' for the unnecessary anguish and pain she has been put through .....
.

Now is the time for your mother.

Love and hugs,
 

hendy

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Feb 20, 2008
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West Yorkshire
Dear Karen
I am sorry that you have been unable to find reassurance from the medics. I do hope that you can find peace and comfort for your mum in her final days and weeks to come. And for yourself. I agree with everyone else, you shouldn't have to go through the anguish of dealing with complaints about her treatment, but when the time's right, I am sure you will find the inner strength to see the process through.
take care
hendy
 

Tender Face

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Mar 14, 2006
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NW England
Where's a weepy smilie when you need one?

Mum's confusion and anxiety state are dreadful. She had been so settled ......

All mum can repeat today is 'I think they are going to take me somewhere and do something to me again' - and how on earth can I reassure her it won't happen given what has already happened? (not that I can think of anything else they could possbly do to her now?) ... she has been traumatised, she is still in a lot of discomfort, we are distressed at her ability to 'remember' her trauma of the procedure and questions now have to be asked, too, of how sedated she actually was ..... (and why, oh why won't her memory loss cut out the bad bits for her?)

She is already being stripped of the independence and dignity she has fought so hard for ..... no longer being dressed (apart from our trip out to Christie's on Thursday) ..... having to use a commode by her bed instead of shuffling herself to the privacy of the bathroom which she was perfectly able to do a few days ago ....... cause she's hooked up to that b****y thing ........ This is just not what mum would have wanted .........

And I can't think of anything in the world that can ever make this right ......

Karen, x
 
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Skye

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Aug 29, 2006
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SW Scotland
Specially for you, Karen



It must be awful to see your mum like that. There's absolutely no dignity in hospitals.

Just sending you love and hugs,
 

Tina

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May 19, 2006
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Dear Karen,

so sorry to hear mum is so upset and confused...the whole PEG procedure seems to have deeply unsettled her :( I don't have any advice and can't think of anything clever to say or suggest either. It's distressing for you to witness mum in this condition, especially since it could have been avoided if the medics had bothered to consult you in the first place about the PEG.

But despite her anxiety and agitation, I'm sure your mum knows you'll be there with her and for her, and you'll fight her corner, and you'll do your best for her.

Thinking of you and yours, and of your mum.
With love, Tina x
 

Margarita

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Feb 17, 2006
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And I can't think of anything in the world that can ever make this right ......

Your right about that & I know some people where
saying that you could except what is happening to your mother , so you can find some peace for yourself to be with your mother .

But hell you must be feeling hell seeing your mother this way , so channel all that energy into getting justice for your mother while she still alive , why just sit back and take it . Don't ! channel all that frustration, sadness you must be feeling into making a complaint .

A family friend is discussing the matter with solicitors tomorrow on my behalf (not looking for compensation - nothing can compensate for what mum has gone through unecessarily this week - just making sure we take complaints forward in the most effective manner to try to prevent this happening again to anyone) ....... while I concentrate on securing the best palliative care I can for mum .....


Your mother must know what a fighting spirit you have .
and how on earth can I reassure her it won't happen given what has already happened?

Tell her ( even thought it has happen to reassure her ) put that hat on of your fighting spirit that your mother must know mean action :) that no one going to do anything any more without your permission as you have made sure that its written in her notes not to other wise your sue them .

May be your have to keep telling her that more then few time, while giving her loads of hugs , its worth a try xx

PS
I'm sure your mum knows you'll be there with her and for her, and you'll fight her corner, and you'll do your best for her.

I 2nd that
 
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