if you were going to die, would you want to know or not?

[onlyjoking9329]

why?
what would be good about knowing?
what would be bad about knowing?

You could just say because they realise he is a tad poorly at the moment and they want him to know they really care. Not sure if this would help, but it might help you to fudge the issue IYKWIM.

Agree with LGJ - everyone very worried about how ill he's been and want to make a fuss of him.

when he was first told he did talk about sorting out money, funeral and stuff like that. it would be really hard if were to have to keep telling him everyday. i don't think either of us would cope with dealing with it everyday

oj, I had a friend who had the same type of tumour as Steve- I know that the site of the tumour will vary, but he never, ever understood that he was going to die, even in the relatively early stages. I have to admit that I always saw it as a blessing, but I wasn't the one having to deal with it every day, and that's the difference, isn't it.

It really difficult because he has changed his brain function, so in some ways he is different to how he was as a person before all this happened, so it must be so difficult.
You must already miss the Steve from before all this.
Sorry, I am quite clumsy at trying to explain what I mean.
It also must be so difficult, if you cannot plan as he cannot remember day to day.

in a way it is a blessing for steve if he doesn't know. is memory is so bad he asks me the same questions over and over. he get angry with stuff cos he can't remember where things are or how things work, yesterday he was shouting and swearing, he never swears and is usually mr chilled.
he gets angry with me when i try to give him meds cos he insists he has already had them or doesn't need them. the really crap thing about this is that i don't think the memory & confusion will get any better.

I would like to know.
People often say we should live life to the full, live each day as if its our last, sieze the day etc..
But no matter how much you aim to do that, its rarely possible.
The everyday mundanity, the strategics get in the way and all too often the rewards and the pay-offs for our efforts are pushed forward to some vague point in the future.
Knowing that you had a defined period of time left, I think you could better focus on how best to use that time both for yourself and the people you love.
Things wouldn't have to be left unsaid. Sometimes you just assume you'll express your feelings another day but for those who die suddenly, that day wont necessarily come.
I like to think that if I were ever in this situation I would see it in some way as a liberation.
The negative would be the lack of future dreams. Whether the things ever come about or not its comforting to look ahead 10, 20 years and imagine my son growing up, fantastic holidays to places I always wanted to see, career aspirations. Becoming a grandmother. The absolute knowledge that these things would not happen for me would be so sad. I cant actually imagine how you would come to terms with that.

Scan was Friday Tamum, we don't get the results for 2-3 weeks.

Re the tablets OJ, can you get a dosettes box?

That way Steve will be able to see if he has taken his tablets etc.

Have you seen the Macmillan Nurses, and what do they suggest?

I realise that Steve doesn't want to see them, but I feel that you need them, and they are there for you and the kids as well as Steve

I would want to know so that I could say all my goodbyes and prepare myself.

I am sure that I would feel sad and bloody scared, but tbh, I think that when a person gets that ill, they know - in their heart of hearts - that it's their time.

I think that it is also harder on the loved ones to pretend. You don't get to say your goodbyes and you spend that last, precious time putting on an act. I think that would haunt you.

Oh god OJ.
Just seen your later posts, so so sorry things are as they are at the moment.
I think you are right not tell him.

The hardest of times to cope with a terminal diagnosis are the early stages. Even without a memory impairement Dh and I have struggled with this (dd too for that matter).

To ask someone to re live those momements over and over would be horrific IMHO.

Can you not get him to let you know his wishes without addressing the issues directly?

i have made a chart for his meds which i show him each time. we are at the oncology unit on tuesday and they have a cancerbacup based there, we got some book last time we went. Steve has always been anti having anyone to help or going to see someone to talk about stuff, but he is coming round to the idea, so i am hoping to get that sorted out very soon

just wishing you strength OJ

i know what his wishes are, had another long chat today (kids are all out)He wants to be cremated and wants Eva cassidys somewhere over the rainbow, he hasn't made a will so he says we should do that. thou he will have forgotten by now.
he has been in bed for a while now and the kids are due back from respite carers at 8.
it will be easier once the kids are back at school i think

cancerbackup are good, but IMHO better at explaining the treatment than dealing with the nitty gritty emotional stuff. For that the macmillan people are IME, much better.

You can't get what you need from a booklet at this stage, you need to be able to talk to someone.

its easier for me to look at cancerbacup as they are based in the hospital so i could go in to see them there on my own maybe, are macmillan nurses automatically involved or do you have to approach them?

things are better when you have some time just the two of you.

Will needs to be sorted. Also possibly a power of attourney for Steve and also possibly for you. I have named my bro as my attourney if, for example I am incapacitated. That way he can deal with my finances. Ghastly thought, but you also need to think about who you would want to look after the children if, god forbid, anythig should happen to you. (sorry if this is the old practical crap,)

You also need to find any insurance documentation, and shift things into joint name, regarding utility bills etc

It is all so fucking awful and so unfair.

Hugs to you sweetheart

I would want to know as long as I had some time to do the things I'd want to do before I die. If for example I was going to die in the next 30 minutes I'm not sure I would want to know. IYSWIM.

our first MMN was there when they broke the news of the timescale. She passed us onto our local MMN, who has been outstanding.

She sorted out all the finacial dtuff, and getting a blue badge for the car etc.

She also put us onto the bereivement councelling for the children.

My understanding is that you get 'given' a MMN, when you get a terminal diagnosis. Our was 3-6 months, so dh has already done better, in no small part because of the excellent palliative care that the MMN organised for him.

you see steves consultant never said the words cancer or terminal.
He said get your affairs in order and he said 2% of people with this type & grade survive for a year and we are hoping you will be one of the 2%

We were told, 'on average, life expectancy is 3-6 months, a 'good' outcome would be a year or two'

In practical terms this isn't likely to happen. We plant for the worst and hope for the best.

But the best isn't going to happen for us, I don't think.

i like plan(t) for the worst and hope for the best, will adopt that one. it is crap not knowing when, the uncertainty of it all messes with your mind. Dunno how you really get sorted with this stuff or if in fact you ever do

Message withdrawn

soz about the plant!

Yo do come to terms with it, I've never been able to accept it 100%, 100% of the time.

I have the odd break down and scream session.

The not knowing is the really vile thing. And he may very well respond to treatment, so you really don't know.

We have just done the stuff that we need to, and try to get on with enjoying whatever time dh does have.

And in the end none of us really knows how long we have. I could get killed tomorrow.

Hugs to you OJ.

My first DH died from cancer so every sympathy to you. In your position I'd be inclined not to remind him as, as MB says, the early days of diagnosis are awful.

If things are in order than maybe leave things as they are, if not you may have to broach the subject one more time? Ditto the power of attourney, makes life much simpler.

But if it comes to it and nothing ahs been sorted it doesn't matter, my DH hadn't written a will and although a pain in the bum I got through it (but not ideal of course). So don't worry just deal with what is necessary for both of your sanities.