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BS: Brain tumour advice needed

vectis 10 May 07 - 06:44 AM
wysiwyg 10 May 07 - 07:02 AM
GUEST,Peggy's son 10 May 07 - 07:06 AM
Hawker 10 May 07 - 07:08 AM
MBSLynne 10 May 07 - 07:32 AM
Morticia 10 May 07 - 07:33 AM
jacqui.c 10 May 07 - 08:15 AM
sian, west wales 10 May 07 - 08:26 AM
Richard Bridge 10 May 07 - 09:02 AM
Mrrzy 10 May 07 - 09:08 AM
Pistachio 10 May 07 - 03:08 PM
PoppaGator 10 May 07 - 03:32 PM
GUEST,Blindlemonsteve 10 May 07 - 03:37 PM
fat B****rd 10 May 07 - 03:54 PM
Peace 10 May 07 - 03:58 PM
My guru always said 10 May 07 - 05:54 PM
katlaughing 10 May 07 - 06:00 PM
GUEST,patty o'dawes 10 May 07 - 06:04 PM
jeffp 10 May 07 - 11:56 PM
Catherine Jayne 11 May 07 - 02:59 AM
My guru always said 11 May 07 - 04:08 AM
Flash Company 11 May 07 - 10:31 AM
rehab1 11 May 07 - 05:58 PM
katlaughing 11 May 07 - 06:51 PM
Donuel 12 May 07 - 11:16 AM
SINSULL 12 May 07 - 01:36 PM
Amos 12 May 07 - 02:06 PM
Phillip 12 May 07 - 02:42 PM
vectis 12 May 07 - 05:15 PM
Alice 12 May 07 - 10:25 PM
George Papavgeris 13 May 07 - 06:56 AM
North/South Annie 13 May 07 - 05:31 PM
vectis 15 May 07 - 10:16 AM
Hawker 15 May 07 - 12:01 PM
GUEST,patty o'dawes 15 May 07 - 04:19 PM
Morticia 16 May 07 - 03:46 AM
GUEST,Cats 16 May 07 - 09:08 AM
vectis 21 May 07 - 06:47 AM
vectis 21 May 07 - 06:50 AM
My guru always said 21 May 07 - 07:06 AM
GUEST,patty o'dawes 21 May 07 - 03:35 PM
GUEST,.gargoyle 21 May 07 - 07:48 PM
katlaughing 21 May 07 - 09:13 PM
My guru always said 22 May 07 - 03:45 AM
vectis 22 May 07 - 06:56 PM
Cats 23 May 07 - 05:09 AM
vectis 23 May 07 - 05:45 PM
Hawker 23 May 07 - 07:41 PM
vectis 07 Jun 07 - 12:47 PM
vectis 11 Aug 07 - 06:36 PM
bobad 11 Aug 07 - 06:46 PM
gnu 11 Aug 07 - 06:47 PM
robomatic 11 Aug 07 - 09:17 PM
katlaughing 11 Aug 07 - 10:10 PM
My guru always said 12 Aug 07 - 11:04 AM
jacqui.c 12 Aug 07 - 01:08 PM
SINSULL 12 Aug 07 - 03:03 PM
Partridge 13 Aug 07 - 03:38 AM

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Subject: BS: Brain tumour advice needed
From: vectis
Date: 10 May 07 - 06:44 AM

My father has just been diagnosed with a Grade 4 tumour in the right frontal lobe of his brain. It is about the size of a tennis ball and inoperable. He was expected to die last week but has been treated with steroids and has rallied a bit. He is losing the use of his left side rapidly but is fairly lucid for short periods (10 minutes at a time).
The steroids merely reduce the swelling in the brain and have no effect on the tumour which continues to grow.
The hospital is now talking about radiotherapy but this will only shrink the tumour and it will grow back again. It will buy him 6 months to a year living in a nursing home. I think he would hate that.
If we do nothing more he will die sooner but possibly more gently in a hospice (if a bed becomes available in time). He is 86.
What would you do and why?


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Subject: RE: BS: Brain tumour advice needed
From: wysiwyg
Date: 10 May 07 - 07:02 AM

Our parish secretary had this battle. She and her family opted for prolonging that battle for as long as possible. When she'd had enough, she announced that she'd had enough, and made her family go along with that.

I knew two Mudcatters well whose cancer was not in the brain, but who faced these decisions. They followed the same path as our parish secretary. A time came when they needed to know it was OK to let go.

I knew one dear old soul whose terminal cancer diagnosis came at the time her early Alzheimers was going into high gear. Her husband had always been a real role model for having cared for her like a champ and a gentleman their whole married life. He chose the path of kindly letting her slip away before her mind was so gone she could not say her goodbyes.

I knew another dear lady whose body had been ravaged by malpractice and surgeries to try to correct the butchering she'd had.... a day came when the docs said they could do no more. She arranged a hospital-based farewell. Lucid as long as possible and then the relief of drugs. A farewell moving from people she'd known all her life coming to visit, memories shared, love, laughter nad tears-- to a brief death watch where her loved ones grew from comforting her to comforting one another.

I've known tough old farmers who have gotten the diagnosis (terminal) in what they thought was the peak of their country/manly strength, and who chose to face it head on, bite the bullet, and let themselves go sooner rather than later. "If I was a cow, I'd put me down," was their attitude, "so why make myself suffer longer than necessary?"


The true but hard thing is, there is no right answer; there is only that which you can bring yourself to do, in doing the best for him that you can.

There also is no way to ensure agreement among all parties, now or later. There is bound to be second-guessing, both sooner and later. Try not to take it personally.


The main thing is to not try to know ahead of time how you or others will or should feel about any of it... just walk through it the best you can, letting it unfold, trying to make decisions from the heart.

~Susan


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Subject: RE: BS: Brain tumour advice needed
From: GUEST,Peggy's son
Date: 10 May 07 - 07:06 AM

Is he in a state to talk about it? If so, his view must be paramount. If not, and there's no hope of effective recovery (i.e. regaining a worthwhile- to him- life), the main aim must be to allow him to die with dignity and without pain.

Euthanasia is totally justifiable in such a case- my own mother asked about the possibility when she was dying- and that's despite being a devout Catholic. She suffered a few months longer because of the mawkishness of the law.


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Subject: RE: BS: Brain tumour advice needed
From: Hawker
Date: 10 May 07 - 07:08 AM

Mary, I am so sorry to hear your news, Difficult question! Have you asked your dad what he wants?
I guess a dilemma like this begs so many questions - What will the side effects of the radiotherapy be? How much suffering will he endure in the 'bought' 6 months - and what will his quality of life in those 'bought 6 months be?
I couldn't possibly answer your question, but am here as a friend in support, if you need me! I am sure that you know in your heart that any decision made will made for what you believe will be the right reasons and therefore will be the right decison. Sending you, your dad and family much love and prayers that you all get through it without too much suffering.
Much Love, Lucy


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Subject: RE: BS: Brain tumour advice needed
From: MBSLynne
Date: 10 May 07 - 07:32 AM

That is so hard. If he can express his wishes obviously it's up to him, otherwise, if it were my Mum or Dad I would let them go.

Love Lynne

Love Lynne


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Subject: RE: BS: Brain tumour advice needed
From: Morticia
Date: 10 May 07 - 07:33 AM

No answers, Mary, you and he will know in your hearts what is best but much love to you all.


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Subject: RE: BS: Brain tumour advice needed
From: jacqui.c
Date: 10 May 07 - 08:15 AM

Last year, in February, my mother suffered a devastating stroke which left her unable to communicate or move. She was being fed through a tube into her stomach and just lay in bed all day with the TV on, in a nursing home. For a few months she was aware of averything going on around her but she then went into a semi-comatose state and finally died of a chest infection in November. We were unable to have the feeding tube removed once it was in, although her quality of life was non-existent. All we could do was make an order for palliative care only, a move that was sanctioned by the nursing home staff.

From the point of view of her family and, I think, the nursing home staff, it would have been kinder to allow her, at 86, to slip away soon after the stroke occurred. The only advantage to keeping her alive might have been that, after a twenty year estrangement, I finally made my peace with her when she was not in a position to hurt me any more. I'm not sure that was worth the nine months that she lay dying.

To me quality of life is important. What's the point of a few months more if it is lived in misery? I agree, if your father is able to make his own decision that should be paramount but, from what you say, he only has short periods of lucidity. That leaves you with a very heavy load. All I can say is, if it were one of mine I would be looking for the gentlest solution possible to ease their passing and I would hope that, if I were in the same position, my children would be doing the same for me.

All the best to you Mary. I'll be keeping you in my thoughts.


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Subject: RE: BS: Brain tumour advice needed
From: sian, west wales
Date: 10 May 07 - 08:26 AM

My father died in 1993 and had radiotherapy and steroid treatments. They probably gave him an extra ... 6 months? And a difficult 6 months for my mother as well, as he was not easy in his mind, particularly in the last months.

Part of the problem was that my mother could not get doctors to give any substantial opinions on the situation as they were so afraid of litigation. Fortunately, a doctor who goes to the same church as mum unofficially explained what was what, so she had some idea as to a time frame (knowing it was terminal). They had a 'do not revive' statement on his medical notes so, when he finally had a very bad 'turn' and was taken into hospital, the end came quickly and was 'uncontested' as it were.

I think mum believed the treatment was the right thing to do, in terms of having a bit more time to prepare.

Interestingly, I was speaking to a nurse here in Wales some months later and mentioned that my father had died of a brain tumour. She looked surprised, and explained a brain tumour is often a secondary cancer and that somewhere else in the body there are other cancers at work.

I have no idea if this is true or not - although I can't think why she would tell me if it wasn't. I only told her so that my own medical notes could be updated (family history stuff) as I had a small brush with the C-word myself a while back.

Don't know if this is any help. But sorry for your trouble.

sian


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Subject: RE: BS: Brain tumour advice needed
From: Richard Bridge
Date: 10 May 07 - 09:02 AM

Switch off is very sensible


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Subject: RE: BS: Brain tumour advice needed
From: Mrrzy
Date: 10 May 07 - 09:08 AM

Man, poor you. One piece of advice: watch out for personality changes and disinhibition - he may turn into a dirty old goat or something through no fault of his own.

One hopes he could at least enjoy it...

Bon courage!


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Subject: RE: BS: Brain tumour advice needed
From: Pistachio
Date: 10 May 07 - 03:08 PM

Ask your Father if he wants 'The extra time'. It will ultimately only prolong his pain and your anxiety about 'doing the right thing'.

If you already believe he'd 'hate a nursing home' then you possibly have your answer. I hope you are not on your own with this decision. Be sure any family members understand your thoughts.

Let him know that you love him then let him go because you love him.


               (((((((((((((((Hugs)))))))))))))))
H.


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Subject: RE: BS: Brain tumour advice needed
From: PoppaGator
Date: 10 May 07 - 03:32 PM

I had radiation therapy to the lower half of my head about three years ago, in much different (more optimistic) circumstances, and it's not at all pleasant.

Based on what I know from personal experience, I wouldn't want radiotherapy for a brain tumor that will only grow back, not for myself or for anyone else.

My tumor was in the neck (right tonsil), and I was relatively young (mid-50s) and otherwise quite healthy. The prognosis was good for elminating the tumor once and for all, and I was told up front that the treatment would be extremely debilitating, but that it would very likely result in complete remission. So, in may case, it was well worth 6-8 months of misery.

At a more advanced age, and with no hope of real recovery, I think I'd say no thanks. Of course, it's up to the person whose life is in the balance, as long as he's able to express himself.

I know this will be a tough time for you and your dad and everyone else in your family. God bless.


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Subject: RE: BS: Brain tumour advice needed
From: GUEST,Blindlemonsteve
Date: 10 May 07 - 03:37 PM

This is why i love mudcat, real people real situation....Vectis, no one can tell you what to do, merely give an opinion. we dont know your dad, but we can say what we would like if we were in his situattion.
I would just like to say that, our societies seem hell bent on maintaining life at any cost, sometimes dying isnt the worst thing that can happen, we also have a fear of death, we should embrace death as we do birth. This situation would be a lot clearer to everyone if we did.
Vectis, i wish you and your family well in the next few months.


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Subject: RE: BS: Brain tumour advice needed
From: fat B****rd
Date: 10 May 07 - 03:54 PM

Al I have to offer is good wishes. Best regards from Charlie.


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Subject: RE: BS: Brain tumour advice needed
From: Peace
Date: 10 May 07 - 03:58 PM

Ditto what Charlie said.


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Subject: RE: BS: Brain tumour advice needed
From: My guru always said
Date: 10 May 07 - 05:54 PM

So sorry to read this Mary, but you've already got some good opinions here so it seems it was good to ask Catters the question. Listen to your heart too and of course your Father's wishes. Sending you positive thoughts and am sure that you will all reach the right decision at the right time.
Candle lit,
Hil x


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Subject: RE: BS: Brain tumour advice needed
From: katlaughing
Date: 10 May 07 - 06:00 PM

Well said, Blindlemonsteve, I agree. Vectis...may all of our good thoughts and energy help you in this time. We are here for you in any way possible.

luvyakat


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Subject: RE: BS: Brain tumour advice needed
From: GUEST,patty o'dawes
Date: 10 May 07 - 06:04 PM

My own dear Da was diagnosed with a brain tumour at 86 years old and as Sian said we were told it was a secondary tumour. They knew this from the scan of the brain tumour. But due to his age they wouldnt test to find out where the primary cancer was, although we did ask.

He had never spent a day in hospital in all of his 86 years so the primary cancer was unknown of, and we worried that it may be causing pain now that they couldnt treat.

They found the brain tumour after he collapsed at home and was taken to casualty, he was given 2-12 weeks to live and he lasted 6. He was given steroids that along with the tumour changed his whole personality. He became agressive and like your Dad was lucid for maybe ten minutes. In which he kept apologising for the 'pressure' he was putting the family under.

Very soon he was in constant pain, although we never knew if it was from the brain tumour, the primary tumour or his imagination. The steroids gave him an artificial appetite and the hospital fed him two or three bowls of porridge every morning before we got there, until we pointed out from his notes he wasn't having any bowel movements and were they waiting for him to explode?

The pain relief had no effect. He had a barbaric four weeks in hospital. They kept telling us to put him in a nursing home, although by now he maybe only had 8 weeks to live. They didnt have a bed for someone to die in basically. They admitted none of the homes locally were designed for the close terminal patient.

We fought this with the strength we had left and insisted on palliative care - they sent a macmillan nurse to look at him in the ward and prescribe drugs that we would find unadministered on his locker when we got there at 10 am every day.

We managed to get him into a hospice for the last two weeks and it was like he had entered heaven. The staff prescribed drugs that instantly took away his pain - and I do mean instantly. The very drugs that a consultant at the hospital had also prescribed, but according to his notes were 'out of stock.'The steroids were stopped immediately too.

He looked peaceful at last and slowly faded away. He went to sleep and didn't awake.

If we had to make those decisions again we would. But we would have wished his life could have ended earlier than it did and we could avoid his suffering for him. His time in hospital was pitiful. But we were told the hospice only took people who had been diagnosed with two weeks life left - and as his original diagnosis said 2 -12 he missed out going there immediately.

Get as many opinions as you can, doctors can be remarkably honest at these times, ask them what they would want for their parent. They dont deliberately make it hard for the patient, but budgets and facilities constrain them. Try and get him into a hospice as soon as possible if you decide not to accept the treatment. They are wonderful places, staffed with dedicated nurses who have the time to allow someone to die with dignity. I have nothing but praise for them.

You have a sad time ahead of you, that is sure, I wish you strength and peace.


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Subject: RE: BS: Brain tumour advice needed
From: jeffp
Date: 10 May 07 - 11:56 PM

My first wife was diagnosed with Stage 2 astrocytoma in the right frontal lobe in August 1985. She had surgery followed by 6 weeks, 5 days/week of radiation therapy. Side effects in her case were hair loss, anorexia and extreme fatigue. She kind of generally felt like shit all the time. Bear in mind that the radiation started while she was still recuperating from the brain surgery. In her case, she lived for 7 more years, most of them good.

I wish you luck and peace. Once you and he and your family have made the decision, commit to it fully and don't look back. That way lies madness. The "if only"s will drive you crazy if you let them.

Jeff


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Subject: RE: BS: Brain tumour advice needed
From: Catherine Jayne
Date: 11 May 07 - 02:59 AM

So sorry to hear your news Mary.

There aren't any words.

{{{Hugs}}}

Khatt


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Subject: RE: BS: Brain tumour advice needed
From: My guru always said
Date: 11 May 07 - 04:08 AM

So many heart-rending memories here. I too have seen the negative side of hospitals and was gladdened to read about Patti's Father entering a wonderful hospice for the final weeks of his life. I would have wished that for my Father too, but regretfully he experienced a dreadful week in hospital before he left us. It's good to see that there are other choices that can be made if you are able to find alternatives. Thank you all for sharing your experiences here, hopefully they may help Mary and her family in this struggle.


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Subject: RE: BS: Brain tumour advice needed
From: Flash Company
Date: 11 May 07 - 10:31 AM

Mary.... This is a terrible thing, a friend of ours lost, firstly, her 23 year old son, then her husband both to this same horror.
They went along the treatment road, but in the end, all you can do is pray for release.
Our thoughts are with you
Brian, Sheila, Petrina & John


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Subject: RE: BS: Brain tumour advice needed
From: rehab1
Date: 11 May 07 - 05:58 PM

Coming from a very new age space I send you love I feel if we accept there is LESS Pain.I have spent many nights saying I love I forgive I accept ---- I accept me,my feelings,this situation,and I accept the power I am being given to get thru this.They say women help bring you in and can help you leave ask him to go to the light if you are there lots of people fear death and maybe lots of us fear coming in, but from what I know it is great over there. Very Very new age but just maybe there is some truth to it


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Subject: RE: BS: Brain tumour advice needed
From: katlaughing
Date: 11 May 07 - 06:51 PM

Good reminder, rehab1. I've watched a film which interviews a young woman who healed herself from cancer by an intensive month or so of watching all humourous old films. Laughter IS good medicine. Though when it comes to such an age as Vectis' dad, it is good to be ready to let go and help one through, also.


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Subject: RE: BS: Brain tumour advice needed
From: Donuel
Date: 12 May 07 - 11:16 AM

If money, pain and suffering were not the issue, there are many new treatments. But money pain and suffering will always be the issue.

Unlike 10 years ago we now have a radiation scalpel which is pricise and does not entail poisoning the whole system. There are the seeding techniques. There are experimental programs at Johns Hopkins and many other centers across the country.

So often people get lost in the chase and forget the big picture. Some are haunted by regret for not making the chase, some regret it was the wrong chase but there will be some kind of regret no matter what is done or not done.

Time is precious so however it is spent, enjoy the treasure at offers.


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Subject: RE: BS: Brain tumour advice needed
From: SINSULL
Date: 12 May 07 - 01:36 PM

You are obviously in a very tough position. Try to think what he would want. I have made my wishes clear to several people and have put it in writing for my brother. Maybe your father has spoken to a friend or relative who can help you make the decision.
If not, go with your heart. I am sorry this has fallen to you.
Mary


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Subject: RE: BS: Brain tumour advice needed
From: Amos
Date: 12 May 07 - 02:06 PM

The laughter remedy was documented in a book by Norman Cousins. A brief description is here.

Another description here.

One of Cousins' books and some related links is here.

Keep breathing.


A


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Subject: RE: BS: Brain tumour advice needed
From: Phillip
Date: 12 May 07 - 02:42 PM

I'm a speech and language therapist, and I work in an acute NHS hospital, on a stroke unit some of the time. I see a lot of people die. My personal opinion, not professional, is that modern medicine often keeps people alive longer than they should live, and that the extra life they have is not what they would have chosen if they had been in a position to make a well-informed choice before they were ill.

Whatever happens, the NHS will look after your father. You need to make sure someone looks after you.


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Subject: RE: BS: Brain tumour advice needed
From: vectis
Date: 12 May 07 - 05:15 PM

Thanks folks
At the moment the hospice is full so his local NHS is looking for a bed in a nursing home for him.
My two children are of the "let him go gently" disposition.
I think that if it is inevitable then quick is better than slow.
Dad's brother agrees with me. Once we have managed to contact his sister to confirm then we will be pushing for no heroics.
Thanks for the info. Keep praying for him he has a very strong Christian faith.


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Subject: RE: BS: Brain tumour advice needed
From: Alice
Date: 12 May 07 - 10:25 PM

I had a friend who had a lemon sized tumor on his brain at the age of 26. The doctors gave him three months,
but he lived for another year. He died at home the way he wanted, looking into his wife's eyes, taking his last breath,
with his young children around his bed.
He went through radiation and had steroids, but the tumor kept growing. He had some pain meds at the end,
but was aware of his surroundings until he passed away. The doctors can't predict the future. If you can
take it a day at a time and be home with him with hospice visiting care, maybe you can have more family time
together.
Take care. I'm sorry for your situation.

Alice in Montana


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Subject: RE: BS: Brain tumour advice needed
From: George Papavgeris
Date: 13 May 07 - 06:56 AM

Mary,

My sister's best friend died from such a tumour 6 months ago, and at the time of her diagnosis she took the decision to prolong. We thought it unwise, and unfortunately we were proved right, because she only did it out of a sense of panic, trying to hold on for all she was worth, but suffering terribly all the time and in the end was unable to have a peaceful farewell from her loved ones (who stood by all the time, disagreeing with her decision but obeying her wishes).

We talked about it afterwards. Prolonging the inevitable only makes sense in order to put one's affairs in order, whether legal, logistical, emotional, spiritual, whatever. Beyond that I see no reason, so I agree with your preferred option.

Whatever happens, my thoughts are with you and your family, and I wish your father as peaceful and serene an ending as mine, last September (though from different causes).


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Subject: RE: BS: Brain tumour advice needed
From: North/South Annie
Date: 13 May 07 - 05:31 PM

Mary,

    This is a very difficult situation for you and my thoughts are with you. See my PM

Annie


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Subject: RE: BS: Brain tumour advice needed
From: vectis
Date: 15 May 07 - 10:16 AM

Now that he is due to be discharged from the hospital they are trying to say that he is no longer terminally ill.
It couldn't possibly have anything to do with the fact that if he is terminally ill and expected to die soon the NHS has to pay his nursing home fees whereas if he is not terminally ill he has to pay them himself out of his savings.
As the steroids haven't affected the tumour in any way they can't have cured him so how come suddenly he's not dying.

B*****ds!

This may lead to a fight with the authorities.
Watch this space...


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Subject: RE: BS: Brain tumour advice needed
From: Hawker
Date: 15 May 07 - 12:01 PM

Mary! Want the Cornish Heavies to come down and sort them out? ;0)
Go for it girl, we are all rooting for you - and your Dad!
Love and prayers and kind thoughts, Lucy & Kevin x


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Subject: RE: BS: Brain tumour advice needed
From: GUEST,patty o'dawes
Date: 15 May 07 - 04:19 PM

The discharge from hospital to nursing home is a tricky one - the hospital will want the bed free and nursing homes are in the main for long term residential care, we enquired at the time and not one home would admit to being qualified to offer palliative care to a close terminal patient.

They could have lied to get the fees, but we made it clear to them that our Da wasn't being sent to a nursing home to die in the next couple of weeks and we would have took him home instead. He couldn't even lift himself an inch towards the end and the hoisting equipment in the hospital was necessary - he was a strapping big guy and a couple of barely qualified nursing home assistants would not have been let near him by us.

They may be being generous with your Da's prospects so you won't push for a hospice - as they are usually full. Or some kind of miracle may have occurred.

Like I said above, it took every ounce of our collective strength to fight for our Da to die with dignity and pain free. I wish you the same strength.


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Subject: RE: BS: Brain tumour advice needed
From: Morticia
Date: 16 May 07 - 03:46 AM

Mary, you need to look at your local criteria for Continuing Health Care. It lays out what health consider 'serious' enough to pay for and what is 'social' and therefore, in these circumstances, your dad pays for.The Mac nurses will have a copy I am sure and so will the hospital social work team who are always worth chatting to in this situation. PM me if you need any more info.


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Subject: RE: BS: Brain tumour advice needed
From: GUEST,Cats
Date: 16 May 07 - 09:08 AM

Hi Mary, Jon and I are thinking of you and sending all kindest thoughts. Perhaps a fight like this is what you need just now to keep you from giving up? Perhaps you need to use this to be angry. As so many have said, you both will know when the time is right. If it is any comfort, you were here when one of my best and closest friends died last year. I never had the time to say goodbye. Use the time you have been given wisely and be together. Remember to say everything you want to say however sloppy or stupid it sounds at the time. You'll never forgive yourself if you don't.
Much love.xxx


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Subject: RE: BS: Brain tumour advice needed
From: vectis
Date: 21 May 07 - 06:47 AM

The hospital have agreed to pay for his first 12 weeks in a nursing home. I went and looked at three this weekend and two were OK but I wouldn't put my old dog (if I had one) in the third.
The steroids had an almost miraculous effect on improving his condition but it is obvious that the effects are starting to wear off and he is regressing slightly.
We will see if he outlives his 12 weeks.


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Subject: RE: BS: Brain tumour advice needed
From: vectis
Date: 21 May 07 - 06:50 AM

Thanks for the many PMs and information you all sent. I was well armed with facts and regulations and would have put up a very good fight if I had needed to. Thankfully this health authority didn't try it on. I suspect that the one I live in certainly would not have been as honest.


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Subject: RE: BS: Brain tumour advice needed
From: My guru always said
Date: 21 May 07 - 07:06 AM

So glad to hear you've had plenty of advice Mary and that there is assistance available for your Father. Sending you positive thoughts, love & hugs!
Hil x


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Subject: RE: BS: Brain tumour advice needed
From: GUEST,patty o'dawes
Date: 21 May 07 - 03:35 PM

It is only when you are involved with a 'fight' to allow a loved one to die peacably that you realise how sad the suffering of those who die alone and with no one on 'their side.'

All the best now, stay strong.


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Subject: RE: BS: Brain tumour advice needed
From: GUEST,.gargoyle
Date: 21 May 07 - 07:48 PM

I would sit - twice a day - with a voice recorder and listen - and ask - and listen and ask

When did you first see mom?
When did you decide that you would get married? What? Why? Where?

Best job - worst boss - how did you manage the family affairs?

What ever happened to ol uncle XXXX?

Sincerely,
Gargoyle

You have been given a window - capture the past.


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Subject: RE: BS: Brain tumour advice needed
From: katlaughing
Date: 21 May 07 - 09:13 PM

One of the best things I've ever seen you post, garg.


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Subject: RE: BS: Brain tumour advice needed
From: My guru always said
Date: 22 May 07 - 03:45 AM

I second that kat, well said gargoyle!


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Subject: RE: BS: Brain tumour advice needed
From: vectis
Date: 22 May 07 - 06:56 PM

Unfortunately he lives a fair way from me so twice a day is not an option.
Having him here isn't on either all his umpteen friends are where he lives and are visiting him all the time.
Luckily I have asked many of the questions I want answers to but I will bet there will be umpteen more when it is too late.


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Subject: RE: BS: Brain tumour advice needed
From: Cats
Date: 23 May 07 - 05:09 AM

We always meant to get Jon's mum to put onto tape all the music hall 'entry' songs that she knew. As a very young girl she sat with her mother [Jon's Grandmother] in the Music Hall in Croydon[?]while she played for the turns. She knew hundreds of coming on songs which were no more than a couple of lines long but were the tags for the stars. Somehow, we ran out of time.


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Subject: RE: BS: Brain tumour advice needed
From: vectis
Date: 23 May 07 - 05:45 PM

Dad has taped all of his songs onto four cassettes so I have all his and some of my grandmother's as well.
It will be odd to hear his voice after he's gone...


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Subject: RE: BS: Brain tumour advice needed
From: Hawker
Date: 23 May 07 - 07:41 PM

still sending good vibes to you Mary,
Cheers, Lucy


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Subject: RE: BS: Brain tumour advice needed
From: vectis
Date: 07 Jun 07 - 12:47 PM

Thanks Lucy, much appreciated.
Did you enjoy Pennymoor?


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Subject: RE: BS: Brain tumour advice needed
From: vectis
Date: 11 Aug 07 - 06:36 PM

Dad finally died peacefully on Wednesday only six weeks after diagnosis.
Thanks to all of you who sent advice and help via this thread and PMs. I'm going to miss him but I have many memories, boxes of photos and loads of tapes of him singing.
He will be buried on Friday in Milton Keynes.


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Subject: RE: BS: Brain tumour advice needed
From: bobad
Date: 11 Aug 07 - 06:46 PM

My condolences to you and yours.


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Subject: RE: BS: Brain tumour advice needed
From: gnu
Date: 11 Aug 07 - 06:47 PM

Thoughts and prayers.


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Subject: RE: BS: Brain tumour advice needed
From: robomatic
Date: 11 Aug 07 - 09:17 PM

Like most folks say the choices are yours. To make overall life easier (or as easy as possible under your given conditions):

I hope you have a living will in order with a designated health care proxy. The living will spells out conditions under which the patient declares the kind and amount of care they want. The health care proxy gives the doctors and health care professionals a go-to person who will call the shots.

Make some exploratory calls to hospices. They can help you come to some choices as to avenues to pursue or not, including last days home care and a 'good death'.

Feeding tube issues. Feeding tubes that go through the nose are very uncomfortable. Going to a 'direct' tube into the stomach will make things more easy for the patient. The issue of whether or not to remove it is actually spurious. The real issue is whether or not to put anything down it. If you are the proxy, you call the shots.

Remember the survivors. Things can be tougher for them than for the patient.


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Subject: RE: BS: Brain tumour advice needed
From: katlaughing
Date: 11 Aug 07 - 10:10 PM

robo...bit late for that, vectis' dad who was diagnosed with a brain tumour six weeks ago and passed away on Wednesday last.

vectis, my condolences...I am so glad you have all of your memories, photos, and tapes.

luvyakat


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Subject: RE: BS: Brain tumour advice needed
From: My guru always said
Date: 12 Aug 07 - 11:04 AM

So sorry Mary, thinking of you & yours now and on Friday. Keep the good memories. Love & Hug,
Hil xx


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Subject: RE: BS: Brain tumour advice needed
From: jacqui.c
Date: 12 Aug 07 - 01:08 PM

Good thoughts coming from Maine to you and your family.


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Subject: RE: BS: Brain tumour advice needed
From: SINSULL
Date: 12 Aug 07 - 03:03 PM

Celebrate his life. And know that he is finally at peace.
Mary


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Subject: RE: BS: Brain tumour advice needed
From: Partridge
Date: 13 Aug 07 - 03:38 AM

Dads are really special, I'm glad you have the tapes and photos. I've have loads of photos of my dad but sadly no tapes. Luckily I can still hear him in my head.

thinking of you,

Pat xx


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