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

[Tender Face]

Thanks again - please keep the blunt, outspoken etc coming - it is helping, honest ......

One of the problems is that I knew my mother's wishes well some years ago (I even know what hymn she wants at her funeral etc. We have had 'those talks' in the past). Those same wishes..... when I was younger when she would almost laughingly say 'Stick me in a home!' (her words -sorry if that causes any offence to anyone) .. but her wishes have changed as she has got older .... she has battled valiantly to remain independent ....... but the woman I knew as 'mum' is very different to the dementia sufferer terrified at her memory loss at times that is 'mum' today .......

If this was *just* cancer I would have no hesitation than to say 'go for it' - do whatever you can ... mum was - IS - a fighter. She has faced major surgery before without a bat of an eye, where others may have cowered at the thought (myself included) ........ it's how she might or might not cope now with any procedures/side effects .... and the fact she does not have the wherewithall to understand the risks being explained to her to give informed consent to anything proposed to her .....

Her attitude has always been 'give it a try' and on that basis I am reluctantly leaning towards taking whatever risks .... then again, just a few weeks ago she handed me her wedding and eternity rings, and have since found 'notes' around the house which suggest to me she is ready to give up fighting ..... and it's not fair of me to expect her to keep battling ........

Sorry, keep thinking I'm getting my head straight and then .....

Karen, x

 

[Skye]

Karen, you're going round and round in circles -- and boy, do I know that feeling!

Can you try to switch off for tonight? A hot bath, a drink, a pill if you have any, a silly game with your son -- then go to bed and sleep?

I often find if I can do that, I wake in the morning knowing the answer. In fact, my brain works better when I'm not driving it!

Please try to rest.

Love,

 

[gigi]

Oh Karen,

I feel your torment...

All I can do is send you love...anguished though it is...

Perhaps you have to explore the posibilities wtih the oncologists now they are aware of the dementia..discuss it fully and weigh up their advice ....

Your mum is lucky to have such a caring daughter...

Lots of love gigi xx

 

[LIZ50]

Dear Karen
As you know, I was in the same predicament as you before Mum passed away last Sunday (thank you for your very kind words). Like yourself, I had to make the decision for Mum and I was told that the treatment wouldn't cure her but might prolong her life a bit. I decided for her not to have the treatment as I felt that her quality of life far outweighed her quantity and I had seen my Dad suffer with chemo and radiotherapy.
I am happy that I made that decision as up until she fell unconscious, she had a good quality of life and, indeed, had been out to lunch with her day care group only the day before. The other blessing is that she didn't feel the pain of cancer because of her dementia. As mentioned before in your previous posts, sometimes the two evils seem to work with each other.
She had palliative care in her last few days and it was pleasing to see that she was treated with care and dignity.
Maybe Mum might still be here if I had chosen treatment for her but at what cost to her general well-being? Al least I can say without any hesitation that Mum's quality of life was good and that fact brings me great comfort.
Love Liz xx

 

[Cate]

Hiya Kaz

I honestly think it comes down to quality of life, and not just prolonging life at any cost.

There are some many ‘ifs’ as you say, if mum didn’t have dementia you would be going for anything and everything to prolong her life, if in the long term that gave her a better quality, and longer life.

In your shoes I think I would be very cautious of going down the Chemo route, personally I think you have to be ‘mentally’ fit to cope with it. I believe that part of the battle of coping with the rigours of Chemo is the ‘realisation’ that at the end of it comes a prolonged and better quality of life. The big question is will mum have that ‘realisation’, or will she just simply feel very very poorly and not really understand why.

You are absolutely doing the right thing, making the doctors understand your mum as a whole person, and not just the Cancer in isolation.

My heart goes out to you, and you and mum are both in my prayers.

Love

Cate xxxx

 

[Grannie G]

Dear Karen
If your mother has given you her wedding and eternity rings she has told you what you need to know.
Love xx

 

[hendy]

Dear Karen
I am so sorry that you are having to go through all this. I hope you will feel more reassured about your mums proposed treatment in tomorrows meeting. Whats best for mum, well I would opt for the painfree and comfortable option if it was my dad. But Doctors think they can cure everything, but sadly dementia puts everything else(including other illness) into perspective.
Hope tomorrow brings some kind of reassurance
take care
hendy

 

[May]

Karen

So sorry you're going through this, an awful decision to rest on one set of shoulders.. I salute you for making the doctors see your Mum in her entirety,that's the only way they will be able to make any recommendations to help you to make an informed decision.I agree with Cate, it comes down to quality of life and as you said, if it was 'just' cancer, then fair enough go for it, but these types of treatments with dementia are such an unknown.

I personally would settle on comfortable and painfree both mentally and physically.

Hope I've not offended, all the above imho. Hugs and Take care.

 

[Lynne]

Judgement of Solomon

Hi Kaz,
These thoughts are literally as they come "off the top of my head" & I have deliberately not read any other replies first.

My Dad died from cancer, aged only 54, so I do have first hand experience of it. On the other hand that was 30 years ago, so treatments & attitudes have undoubtedly changed (improved one hopes?) in that time. My nextdoor neighbour is currently having chemo and has felt SO ill as a result of the therapy. BUT, she is in her 50s and physically strong, and has been told her chances of recovery are good.

Your mum is physically weak (not least because of the hell you've both been through in recent weeks!), would be unable to rationalise WHY she was being put through a treatment which might well make her feel worse than she does already, & cancers of the throat & mouth do not have a good survival rate.
On top of all that, her quality of life is already drastically reduced by dementia, which condition is irreversable.

And to cap it all, the incompetence & stupidity of the medical 'team' charged with her care leaves me lost for (printable) words!
Common sense does not seem to be a quality required to be a "specialist", or to look at the whole person as opposed to 'just' the cancer.

If this were my Mum and I was burdened with this decision, I wouldn't go for the chemo. Palliative care yes, absolutely, to the Nth possible degree.

The bottom line - as you already know, sorry! - is that's it's a rotten stinking No Win situation. (My own choices of adjectives was ***** out by the TP software!) Whatever decision is made, you will be plagued afterwards by "What if .." thoughts. It's another guise of the guilt monster; even if you have done everything humanly possible (or do I mean humanely?) it is NEVER going to be enough for someone who is so precious to you.

Love & ... everything

 

[sue38]

Hi Karen,

I'm sorry to be late coming in to this thread, but have only had time to pop in to TP very briefly in the last couple of days and this is the first chance to read the thread properly.

I apologise for what I am about to say, as it is blunt (I know you asked for blunt, but...) and secondly may complicate things further.

It seems from your posts that your Mum may be ready to go, but I get the feeling that you are not ready to let her go.

If I were your Mum I would say let nature take it's course, just keep me as pain free as possible. But if I were you I would keep battling...

I'm sorry if this is no help whatsoever.

I am thinking of you and your Mum and I hope you are able to come to a decision that you know in your heart is right.

Love xx

 

[Margaret W]

Karen

You asked people to be blunt. I hesitate to be blunt. I hate it. This is only my opinion, ignore it if you think it is not appropriate. But you seem to have new news regarding mum's options, so my opinion might be out of date already.

You have already said what your preference would be if it were you in this situation. I would have the same preference. 4 years ago my dad was in the situation of being kept alive or not, and I made it known to the doctors that I wanted no suffering unless it was going to prolong his life. The consultant told me she could have no input into hastening his death. I have no regrets at making the statement. He died two days later. I miss him like hell, he was the best Dad on earth, and the best granddad, and even today I look to the skies and call "Fred, tell me what to do", and if he had been alive he would have done so.

But his time was "up", and he didn't suffer, and I am eternally grateful about that. There was no surgery available for him, no hope for him living any longer (he had already exceeded expectations by a year, a very valuable year for us all), but the end came.

So, being blunt, I would not prolong life unless I felt there was a real chance of several years of happy life ensuing. It doesn't sound like that is the case with your mum. It is a fact of life that we all will die, sorry for saying this, and do you really want to put your mum through a whole load of invasive and distressing treatments to extend her life for a few months? I think not, Karen, but at the end of the day it is your decision, and only you can weigh up the pros and cons, and this website crew will support you 100% in your decision, and all of us might be wrong in our advice.

I think letting nature take its course is the route you will follow. But, love, it is entirely up to you. You might feel that your mum has a resilience that you need to consider, and to give her another chance. I don't know. Whatever decision you make, we all know that you will have made it with love and care for your mum, and with her best interests at heart.

Much love

Margaret

 

[Tender Face]

I am awestruck at the wisdom shared here and the kindness and courage of people sharing their own hurtful experiences and thoughts on such a difficult issue.

The only way I know I will live with my decision later is if I know it has been based on knowledge, facts (or best prognosis) straight talking and not a sudden burst of emotion (a bit tough when life is so emotionally charged at the minute). The objectivity here is helping me keep to that path. I am sure you will all realise that just about every waking thought these last few days has been 'PEG-Chemo-nothing' alongside a lot of soul searching and tearful discussions with mum's family and closest friends.

I was alarmed yesterday to discover that the oncologist has been to see mum without me present, as well as an OT (already planning her return home post PEG when we are yet to give consent for it to go ahead!) so I have some issues that if I have not been present during any consultations I am not fully informed to make the best decsion - Mum, of course, couldn't even remember they had been to see her (I found out from the Ward Sister) let alone what had been discussed. (And goodness knows what mum has said to them!) Don't worry - that issue is on the agenda for my meeting tomorrow!

Mum was in brilliant mood again yesterday (she is so settled and happy on the ward but I am getting vibes that it is not an option open to us for her to remain there much longer) and we managed a good chat ourselves which confirmed my thinking that some options were a no-goer. I asked her if she understood that by not going ahead with proposals she would not get any better ... she simply shrugged her shoulders and smiled 'Que Sera, Sera.' After breaking my heart with that one, she then quipped, 'Anyway, you decide what's best - you know I'm three sheets to the wind most of the time.'

With many thanks to you all - still lots of options to explore and questions to be answered tomorrow ... but we're getting there...... Karen, x

 

[Taffy]

Dear Karen,

I honestly think that indirectly your mum is telling you that she is ready to let go but at the same time she feels your pain. I can deeply sympathise with you having to face such decisions.

The only way I know I will live with my decision later is if I know it has been based on knowledge, facts (or best prognosis) straight talking and not a sudden burst of emotion

Karen, your thoughts are on track here, you take all the information given on board mull it all over and only be influenced by what you feel is the right choice this way there will be no regrets.

When one has to make decisions for another's life it is a horrific place to be in. Whatever road you decide to walk I wish you all the fortitude needed. Love Taffy.

 

[Skye]

When one has to make decisions for another's life it is a horrific place to be in. Whatever road you decide to walk I wish you all the fortitude needed.

I can't put it any better than that!

We're all behind you, Karen, and will be sending you so many positive vibes for your meeting tomorrow. It won't be easy, but you can do it.

Love and prayers,

 

[Margarita]

The only way I know I will live with my decision later is if I know it has been based on knowledge, facts (or best prognosis) straight talking and not a sudden burst of emotion (a bit tough when life is so emotionally charged at the minute).

straight talking and not a sudden burst of emotion

But we our only human Karen, but I know your right. as I had a one of them burst of emotion as I never new what her wishes where for end of life she was a RC that I would not let them take the tubes of that was keeping her breathing, feeding her.

So I play music to her keep talking to her slowly all tubes came of she was breathing on her own , but needed to be fed with yogurt some protein food. So then she was taken out of ITU , put on a ward .

she could talk , but the words where incohearant , she just follow me with her eyes.
Doctor where right she had no quality of life but my emotion, not knowing her wishes where getting in the way of listening to them. so I agreed only if she had another stroke , don't try to bring her back & she did have another stroke that did not kill her , but render her into nothing , so that when the morphine was put into place, all that comfort me is her strong faith of life after death . Even if its not my belief .

 

[Tender Face]

Was informed today the news is grim - without some intervention mum's prognosis is as little as two weeks ...... the position and 'aggression' of the tumour in the upper oesophagus is such they expect her swallowing to completely shut down in a very short time ..... also explains why they ruled out the stent ......

BUT - and big but - if we go for intervention and can PEG feed her to a state she could tolerate the chemo-radiotherapy now proposed (yet another new idea announced today!) - there is a long shot that prognosis may extend from two weeks to up to two years ...... for the first time in weeks the word 'curative' not purely 'palliative' was mentioned ...... (at which point every resolve I had made changed again of course!)

The specialist 'medics' conceded they are not fully aware of mum's dementia issues and other general health - the 'general' consultant conceded he does not know enough about chemotherapy - all admitted they know 'b****r all' about the combination of chemo/radiotherapy on a dementia patient ..... but it was agreed - there is little point in talking of even 'partial cure' if mum's brain is completely 'shot' in the process and what quality of life for her then still batttling the cancer?

I doubt the chemo/radiotherapy route will happen - the sheer logistics of the latest proposals even by daily ambulance from one hospital to another are probably too much for her to cope with even if we can pile a stone on quickly - .... but as a result of today's discussions we have subsequently secured an urgent consultation at Christie's with a leading oncologist ...... so if nothing else, I know we will have explored every possible avenue ...... and getting the best specialist advice we can ..... (even though I am sure mum would have - and still will - refuse proposals)

Thank you all again for your wisdom and good wishes - having the 'virtual support' behind me today stopped me crumbling ... (well, most of the time!)

Love, Karen, x

 

[Grannie G]

I`m so sorry Karen. Credit to everyone who is still trying.
Love xx

 

[Skye]

Dear Karen

Sorry the news is so grim. Would it be beyond them to set up a multi-disciplinary case conference, so that each consultant (including the dementia one) would weigh up the options? I don't think any one consultant would know enough about the other specialisations to advise.

At least you're having a consultation at Christie's, so you're getting the best there is. You can't do any more, Karen, and if the specialists can't predict the outcome, how on earth are you supposed to?

Love and hugs,

 

[TinaT]

Christie Hospital is one of the leading cancer hospitals in the country and I'm sure you will get very good advice and 'straight talking' from them which can give you some guidance in this most heartbreaking time.

My husband Ken, who has Lewy Body Disease,had to go to the Christie Hospital for an operation on a benign tumour on his face. We both recieved nothing but kindness and understanding of his dementai whilst we were there.
xxTinaT

 

[Taffy]

Dear Karen,

So sorry that you, mum and family have to go through this ordeal.

I am thinking of you all, caring thoughts. Love Taffy.