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Old 18.07.2015, 20:27
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Brain tumor - what can I do for my friend?

This is not a beautiful post - sorry.

A friend of mine suffers from a brain tumor.

The tumor sits in a difficult location, surgery never was an option.
All expert medical checks are done, no more need for advice here.

But every night he has his seizures and scratches himself badly.
I cannot go into details. How can I be helpful?
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Old 18.07.2015, 20:30
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Re: Brain tumor - what can I do for my friend?

If your friend is still lucid, just be a friend and keep them company. If they're mobile then see if there's anything they want to see.

My limited experience is that, obviously depending on where the tumour is, the personality changes pretty quickly and so does mobility, so make the most of it.
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Old 18.07.2015, 20:58
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Re: Brain tumor - what can I do for my friend?

Just be there. Talk openly and frankly about their wishes for the end game while you can - they may have specific wishes about who to contact, when, and under what conditions.


Transport and companionship. Just the mechanics of laundry and food shopping will become a burden.
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Old 18.07.2015, 21:32
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Re: Brain tumor - what can I do for my friend?

Horrible situation. Not fun. You both have my sympathy.
Practical first: If your friend wants to, he could try wearing gloves to prevent too much injury to the skin, especially if he scratches while asleep or semi- conscious. Loose cotton clothes, air cool, good cream, fingernails short. All the usual stuff. For some reason putting pressure or rubbing another part of the body helps. (don't ask me why). I read once that scratching another surface can help too. Cannot remember where I read it though.

Unpractical: As the others say, be there. No cheering up but maybe he has, or has acquired a sort of gallows humour which helps him. A good laugh can work wonders on a bad day. Don't make promises you cannot keep. If he ever asks you to leave, ask if he means it and if he says yes, go. Some folk hate being watched when they no longer feel themselves.
Be inventive!
Maybe there is something unexpected he would like to do: A kid (13) came to our disabled swimming group after she was diagnosed with an inoperable brain tumour and was semi paralysed. She had been a good swimmer but had become a sinker through the tumour. She loved fetching objects from the bottom of the pool but was not able to come up again, so our agreement was that when she was running out of breath she would open her eyes wide. Then I pulled her up for air. In the last months of her life it was the highlight of her week and she swam until about ten days before she died. Her mother was (and 15 years later still is) grateful that she could enjoy something in those dark days. So ears and eyes open. Maybe he has something completely crazy at the back of his mind. The Bucket List?

Thinking of you.
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Old 18.07.2015, 22:24
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Re: Brain tumor - what can I do for my friend?

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Just be there. Talk openly and frankly about their wishes for the end game while you can - they may have specific wishes about who to contact, when, and under what conditions.


Transport and companionship. Just the mechanics of laundry and food shopping will become a burden.
This. Be there while you can. Be there while you have the strength. Be there while he is here. Take breaks when necessary, make sure you don't burn yourself out, and get help for yourself when needed while making sure that he doesn't get the feeling that he's causing you distress.

Be there - because once he's gone, you won't be able to

I'm very sorry for your situation. These moments you have with your friend are precious - cherish them.

Get memories of your moments together - if he's able to go out with you, take him places he wants to visit, and take pictures/videos of you guys together, providing him with a copy to have while in treatment/hospital/difficult situations. This way both of you have something to hold on to and remember each other by when things get tough.

If you want to, tell him he can reach you by (phone/email/other means), again making sure you don't overexert yourself.
It can be calming for someone in such a difficult situation to just know that someone would be there - without actually needing to dial a number or write a message.

All the best to you and your friend.
Let us know if we can help in any other way.
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Old 18.07.2015, 22:34
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Re: Brain tumor - what can I do for my friend?

Thank you all very much for your kind thoughts!
I appreciate all of this.

It amazing how helpless we can be.
2 Ipads and 5 smart phones are good for nothing in such situations.

Here the self help groups gain value.

Have a nice weekend :-)
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Old 18.07.2015, 22:52
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Re: Brain tumor - what can I do for my friend?

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Thank you all very much for your kind thoughts!
I appreciate all of this.

It amazing how helpless we can be.
2 Ipads and 5 smart phones are good for nothing in such situations.

Here the self help groups gain value.

Have a nice weekend :-)
There's never not enough time to care, so we take it - and give it
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Old 18.07.2015, 22:57
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Re: Brain tumor - what can I do for my friend?

One feels so helpless in these situations! I feel for you. I have an uncle who has appr. 6 months to live because of cancer and I don't know how to deal with it.
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Old 18.07.2015, 23:04
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Re: Brain tumor - what can I do for my friend?

See what practical things you can do for your friend, as others said, laundry, shopping, cooking. And as said as well, just be there.

But, take care of yourself as well! This is a time where emotion will drain your energy so watch out for yourself and try to have some time to relax and wind down.
I do not know this but have been "through" a mother with Alzheimer. Only if your are strong and feel well, you can give the care you really want to give your friend.

Take care!
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Old 18.07.2015, 23:08
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Re: Brain tumor - what can I do for my friend?

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It amazing how helpless we can be.
2 Ipads and 5 smart phones are good for nothing in such situations.

The only tool for the job is your humanity. Ipads and smartphones can easily distract us from both our humanity, as well as our helplessness. You can "deal with" poor battery life, or bad reception. Death is something we all have to live through. If it works out that you end up getting deeply involved, be aware that you will also need, and draw upon, a support infrastructure. I've been through this a couple of times: It isn't nice, but it is intensely human.
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Old 18.07.2015, 23:28
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Re: Brain tumor - what can I do for my friend?

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The only tool for the job is your humanity. Ipads and smartphones can easily distract us from both our humanity, as well as our helplessness. You can "deal with" poor battery life, or bad reception. Death is something we all have to live through. If it works out that you end up getting deeply involved, be aware that you will also need, and draw upon, a support infrastructure. I've been through this a couple of times: It isn't nice, but it is intensely human.
Maybe I should have said I don't what to do or how to act.
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Old 18.07.2015, 23:32
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Re: Brain tumor - what can I do for my friend?

I understand MGD. Try to have a good time, do nice things. My advice would be (how strange it may sound): talk about former times, the past. Ask anything you want to know about your family.

I found out too late that there are so many things I would like to ask about my family´s past and I no longer can.

In the end I think the things that counts is that you are there for him!!
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Old 18.07.2015, 23:38
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Re: Brain tumor - what can I do for my friend?

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Maybe I should have said I don't what to do or how to act.
There is no "right" way. Take your lead from your uncle - if he wants to pretend nothing is happening, play along. If he wants to talk, try to listen. He might change moods between options.

Try to stay away from "it'll be alright"and "well you never know, they might find a solution" type statements. If your uncle has accepted his reality, trying to convince others is just tiring / boring / annoying.

Try to treat him as normal - sure, there will be special things you want to say. And that's OK. But the rest of the time, remember he's still a person with interests. Just because he is dying on a known timeframe doesn't mean you can't talk about normal stuff, laugh about stupid things, tell him small annoyances (that probably seem tiny compared to cancer). All these things can help him still feel part of the living...not wrapped up in cotton wool and treated like a mindless feeble non-entity.

And failing any other option, just say to him - "I don't know what to say or do". He's human....he knows this is not easy.

Umm, not always good with words, so please take this with good intentions. Hugs
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Old 19.07.2015, 09:53
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Re: Brain tumor - what can I do for my friend?

Such a horrible and difficult thing to go through, for all of you. As said before, look after yourself so you are better able to help your friend or uncle. Remember to tell them you love them and how important they are to you, let them say the same to you.
If they want to talk about their passing, how and where they want go, let them, and tell others so you all know. My father, bless him, whilst still well enough, walked up to the high street and organised his own funeral. It seemed odd at the time but we were so grateful after.
Accept help when offered, "it's OK, we will cope" is not the correct answer.
Laugh and cry together. Just be there.
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Old 19.07.2015, 12:32
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Re: Brain tumor - what can I do for my friend?

So much good and caring advice given already- so won't repeat.


But here is the very difficult part- is your friend aware of EXIT in Switzerland- eg the right to choose to die with support, if s/he would wish not to wait for the next stage? If s/he has lived for 6 months in Switzerland, irrespective of nationality, s/he can become a member and get lots of advice and support- should this be something s/he would want to consider (and I am NOT saying s/he should- just that is it this...) - main problem is making that decision and going ahead before the next stage is reached- as one has to be compus mentis and lucid part of the time to make such a decision.

http://www.exit.ch/en/

Again, this option is not for everyone- but I think anyone in his/her position has the right to know this is available to them- should they wish to, even it it is 'just' to consider this as one option, and discard it.

Last edited by Odile; 19.07.2015 at 16:12.
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Old 19.07.2015, 13:10
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Re: Brain tumor - what can I do for my friend?

This post is close to home for me, we had news from the UK last weekend that my cousin is now in a coma she will not wake up from. She's only 39 her tumour was found 6 years ago. We're all devastated and all we can do now is wait for the inevitable news

It's hard to give advice without knowing your friend's personality; but based on my cousin's, I would guess that your friend would want as normal a life as possible, try to do normal stuff like you would if it weren't for the tumour. Regarding the scratching, keep nails trimmed and smooth and perhaps before your friend goes to sleep they could put on gloves or even socks over their hands. I used to care for a young man who had constant seizures (50+ a day) clonazepam helped him through the night.

Really sorry this has happened to your friend xxx
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Old 19.07.2015, 13:23
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Re: Brain tumor - what can I do for my friend?

A friend of a friend died last month of a brain tumor called clioblastome (there are over 120 types of brain tumors). He wanted to become a member of 'exit'. His 'onko-spitex' told him that he had to pay the CHF 900.- which he didn't want to. He opted for the clinic 'Reusspark'. They provide very good palliative care there with an option similar to 'exit'. For further information check here: http://www.reusspark.ch/

Just recently I came across this guy with his story (get in touch with him to find out the details of 'his' cure - if your friend is interested): http://www.mindfulleadership.ch/home.html
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Old 19.07.2015, 13:27
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Re: Brain tumor - what can I do for my friend?

It's just really important to be there. Do things that will make your friend/relative comfortable. One of the really difficult things that many people experience is that no one will talk about dying. It's a difficult, sad and uncomfortable conversation, might be a funny and macabre one too, but it's just really important. If that's a need, and you can help with it, then do.
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Old 19.07.2015, 16:08
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Re: Brain tumor - what can I do for my friend?

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There is no "right" way. Take your lead from your uncle - if he wants to pretend nothing is happening, play along. If he wants to talk, try to listen. He might change moods between options.
This last sentence is what sometimes makes it so very difficult. One day a person wants to talk about their present situation and the next (or even just an hour later) they don't want to say or hear a word about illness or dying. Some times both parties tiptoe around, avoiding the subject because they think, incorrectly, that the other one doesn't want to mention it. The attempt, as a friend, to 'get it right' is a tightrope walk.

My brother-in-law had been discovered to have inoperable cancer. He was in hospital in England. My sister was in Hongkong. Neither knew that the other person already knew the verdict and the doctor was not available. Until the matter was cleared up, their telephone conversations were strained to say the least and for my sister it was one of the worst times of the whole illness.

Most of us appreciate a safety net. If you are close enough to the person concerned, they don't seem to have a great deal of support and you have the time and wish to do so, you can say that you are there if they want to call, day or night. Only if you can do it though.

Maybe also check out with others in the family and with friends that visits are staggered. It helps to spread the load a bit.

Ah, I forgot. When a friend, and years later my FIL, were in palliative care, I sometimes used to visit at meal-times. I had more time to help with feeding them than the staff and possibly doing it 'with love' as opposed to because I was paid to do it might have helped them to take more time and, as far as possible, enjoy their food. Might have been an illusion but I felt more 'useful' and, by golly, you feel so very helpless most of the time.
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Old 19.07.2015, 16:58
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Re: Brain tumor - what can I do for my friend?

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This last sentence is what sometimes makes it so very difficult. One day a person wants to talk about their present situation and the next (or even just an hour later) they don't want to say or hear a word about illness or dying. Some times both parties tiptoe around, avoiding the subject because they think, incorrectly, that the other one doesn't want to mention it. The attempt, as a friend, to 'get it right' is a tightrope walk.
I learned that speaking isn't necessary sometimes - a hug, a holding hand or just being in the same room can be just as helpful. Don't force things, OP. Again, I'm so sorry.

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It's just really important to be there. Do things that will make your friend/relative comfortable. One of the really difficult things that many people experience is that no one will talk about dying. It's a difficult, sad and uncomfortable conversation, might be a funny and macabre one too, but it's just really important. If that's a need, and you can help with it, then do.
Absolutely.

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This post is close to home for me, we had news from the UK last weekend that my cousin is now in a coma she will not wake up from. She's only 39 her tumour was found 6 years ago. We're all devastated and all we can do now is wait for the inevitable news

It's hard to give advice without knowing your friend's personality; but based on my cousin's, I would guess that your friend would want as normal a life as possible, try to do normal stuff like you would if it weren't for the tumour. Regarding the scratching, keep nails trimmed and smooth and perhaps before your friend goes to sleep they could put on gloves or even socks over their hands. I used to care for a young man who had constant seizures (50+ a day) clonazepam helped him through the night.

Really sorry this has happened to your friend xxx
Perhaps, if your friend is into this, OP, you could give him some fun gloves/socks so that he has something reminding him of you/his friends in this incredibly hard time.

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So much good and caring advice given already- so won't repeat.


But here is the very difficult part- is your friend aware of EXIT in Switzerland- eg the right to choose to die with support, if s/he would wish not to wait for the next stage? If s/he has lived for 6 months in Switzerland, irrespective of nationality, s/he can become a member and get lots of advice and support- should this be something s/he would want to consider (and I am NOT saying s/he should- just that is it this...) - main problem is making that decision and going ahead before the next stage is reached- as one has to be compus mentis and lucid part of the time to make such a decision.

http://www.exit.ch/en/

Again, this option is not for everyone- but I think anyone in his/her position has the right to know this is available to them- should they wish to, even it it is 'just' to consider this as one option, and discard it.
Seconded. Please gently inform your friend of this option, and if he wants to become a member but finances are tight, perhaps you could start something to fund his membership. I think you have to pay more for assisted suicide than the yearly CHF 45.- if you choose to die within the first several years of membership. If you choose to die after several years of membership it only costs the yearly fee of CHF 45.-.

Also, know that going this route will necessitate multiple discussions with EXIT team members over a long period of time - they won't help from one day to the next without fully knowing and understanding the suicidal patient's history, reasons to die etc., and for good reason. So better to get started sooner than later, remembering that starting this procedure or even taking it almost all the way to the end does not mean that, an any point, the suicidal person has to kill himself. One can always say no and turn back.

As Odile says, a very hard decision to make, but it's very calming for those who are open to such paths to have the option.
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