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Original poster

hospital vist is today, we need to decide on the chemo.

137 replies

onlyjoking9329 · 05/02/2008 10:44

Steve is due to re start chemo today.
He is so forgetful and confused he is not able to have a meaningful conversation about anything. the chemo doesn't appear to be helping him, last month he had 3 good days, this month he hasn't had any good days, that could be down to the chemo or it could be down to progression of tumour.
he asks me on a daily basis if i can end it all for him and i hate that he feels like this, i am sort of hoping that the consultant makes a desion to stop the chemo to save us having to.
before steve was confused he said that he understood that chemo would buy time but that he didn't want to buy crap time.
i hate that steve has to go throu all this it is like torture how he is feeling at the moment and there is no light at the end of the tunnel either.

OP posts:
Lotstodo · 09/02/2008 19:49

As you know, there are many people here on MN that think of you all the time. You are an amazing family.

cookiesandscream · 09/02/2008 20:40

oh sweetheart, nobody should have to be going through this, i really am in awe of you i really don't know how you do it, but you do do it and i know it is going to get harder for you, i promise to walk beside you.
i can't take the pain away, it must of been heartbreaking to answer your sons question, you did very well.

PollyDolly · 09/02/2008 20:46

I am so sorry things are so difficult at the moment OJ. I am thinking of you and your family at this terrible time. God bless XXXX

Christie · 09/02/2008 20:51

This reply has been deleted

Message withdrawn at poster's request.

39andcounting · 09/02/2008 20:54

Hi OJ,

I hope you are getting all the support possible at the moment.

I am so sorry to hear Steve has taken a turn for the worst. I cannot begin to imagine how feckin awful life is for you at the moment. You will tell the kids at a time you choose, I'm sure. Make sure you involve as many professionals as possible to help you.

We have missed you in the Sanctuary and I feel like I'm stalking you over here but just wanted to touch base and send you a big ole 39+ hug and theres a large (ish) r+c waiting for you elsewhere.

Thoughts and prayers are with you all.
xxxxxxxxxxxxxxxxxxxxxxxxxx

throckenholt · 10/02/2008 08:06

you are saying in not quite so many words that the real Steve has gone and you are left with the deteriorating shell. Awful but true (brain disease is particularly hard to watch progress).

If he scares you - you really need to think at which point you say - ok - the important ones left now are the kids and you - because "Steve" is no longer here. At that point you need to stop feeling guilty about abandoning him and accept any help the hopsice service can give you - and concentrate on getting you and the kids through the next stage.

You have done a fantastic job getting this far - be proud of yourself.

Chopster · 10/02/2008 08:21

OJ, don't feel selfish. They are only young, and like you say they will have to deal with it soon enough. I think what throckenholt says is very wise.

Buda · 10/02/2008 08:45

Oh OJ. Firstly - you are SO not selfish. You are protecting your children as much as you can.

I am really sorry that you are having to cope with this. What throckenholt says makes so much sense. Is Steve likely to get more agressive as the disease progresses? Can anyone tell you? You may have to think about the hospice for the sake of you and the children.

Christ life is such shit sometimes.

Whatever happens whenever OJ we are all here for you. You seem to be an amazingly strong person but please don't feel that you have to stay that way for us. You can let go here.

I just wish there was something we could all do.

Pixiefish · 10/02/2008 08:52

So Sorry things are here OJ. Also crap that even at the hospital there is no reprieve with waiting around

lilyloo · 10/02/2008 08:54

OJ so to hear things are going downhill. I wished there was something i could say or do but words are futile at times like this. Just to let you know i am thinking of you all , this is such an awful disease.

Original poster
onlyjoking9329 · 10/02/2008 08:55

I promised Steve he could stay at home and if poSsible I want him at home too, the mc nurse is calling me today she did mention about getting district nurse in I didn't think we needed it then but we do now.
I know what you are saying about the hospice and it may seem like I am being a martyr but it is not so easy when there are emotiions involved.

OP posts:
misdee · 10/02/2008 08:58

OJ, ig you are selfish, then i am as well. I NEVER told the girls how serious peter's situation was. They knew he needed a new heart but they didnt know what would happen if he didnt get one.

Protect the children from as much heart ache as possible, you know them best and how to deal with it.

I cant get on msn lately as it boots me off the internet as soon as i sign in, and i broke my mobile phone and lost all my numbers, if you still have my number then text me and i will reply via text.

xx

IndigoMoon · 10/02/2008 09:00

oj my sympathies are with you x x x x x x x

paddingtonbear1 · 10/02/2008 09:00

OJ I really feel for you, I don't post much but have been following your story.
Re the chemo, in my mum's case the decision was made for her - she took tablets not sure of the dose, but the side effects were awful and she was told that if she took anymore it would kill her before the cancer did.
I think she wished she'd never started with it as it didn't work, but you don't know beforehand do you? At the time we thought it was worth a shot.

lilyloo · 10/02/2008 09:03

OJ can totally understand it such a personal decision. My mum went into the hospice and they were lovely. However we never left her so it was hard travelling there every day and meant things at home slipped because we were hardly there. But it meant we got sleep at night and a break when we needed it.
If you keep him at home it will be hard but accept all the help your offered and def see about getting the district nurse in. Is it them who will sit with Steve in the night so you can get some sleep

Original poster
onlyjoking9329 · 10/02/2008 09:23

I dunno what the DN can do but was hoping that they would offer a quicker medical response than the doctors, he gets very aggitated at night and even thou he is on sleeping meds and lorazepam he may need something else to sedate him, he settled much better last night but the 2 nights before it took till 11 and the help of my neighbor to get him to bed. Excuse rubbish typing am sending from phone.

OP posts:
lilyloo · 10/02/2008 09:28

Am sure theycan help with meds. I just thinking from when my nanna nursed her husband at home with prostrate cancer that spread to his brain. She asked for help at night time and they gave him morphine and also stayed with him through the night to give her a rest and enable her to get some sleep. Although this could differ in areas.
I would really stress how difficult things are to your mc nurse, don't be afraid to say you are finding things too difficult hopefully that will push them into getting you more support.

TotalChaos · 10/02/2008 09:31

sorry's it continuing to be so tough for you, I don't know much about DN's either, but hope that one would be helpful with practical stuff.

throckenholt · 10/02/2008 09:54

the real Steve was at home - maybe now it is just the physical shell it is not so crucial.

Another thing is - maybe it would be better for the healing process if home was not associated with the place he dies - if it is your sanctuary to come home to.

I am not trying to persuade you to go against what you want - just trying to suggest that you don't have to feel beholden to things you agreed before either of you knew what the reality was going to be like.

Christie · 10/02/2008 09:54

This reply has been deleted

Message withdrawn at poster's request.

WelliesAndPyjamas · 10/02/2008 10:01

thinking of you x

Original poster
onlyjoking9329 · 10/02/2008 10:07

if we knew how long Steve has left it would be easier in some ways if it is only weeks then he needs to be at home with some support, if it is months then some respite would be good and neccessary. It would be crap for us all if. His remaining timewere short and was spent in hospital.

OP posts:
triplets · 10/02/2008 10:14

Good morning Oj............not one of us would want to be dealing with what you are at the moment, so awful having to make such decisions. I cannot begin to imagine how it must be inside your 4 walls, how the children are also coping. There is going to be no easy way, when my MIL was dying of cancer we kept her at home as long as we could, I could stay with her as we had lost Matthew and could give her 24 hour care. One morning I washed her and took her a cup of tea, and for the first time she looked at me and said " I think you had better take me to hospital". We were very lucky as our local hospital had just opened 2 hospice rooms, she was their first patient, I did not want to leave her, Harry was working shifts on the ferries, so the hospital let me have the second room next to her. She died 10 days later. When my Dad died of cancer(2 weeks from diagnosis) we were called to the hospital and told he only had days to live and they wanted to move him across the road into the hospice, we couldnt do it, mainly I feel for our sakes as it made it all seem so final. Again we were lucky, if thats the word, as we stayed with him, sleeping on chairs for 3 days until he died. Heartbreaking time, but I couldnt bear Dad or MIL to die without us being there, because no-one was with Matthew and to this day that hurts and tortures me, thinking of his fright at what was happening to him, what was the last thing he heard, oh life is so very very hard........love to you Oj xxx

violetsky · 10/02/2008 15:14

OJ, (I am a regular who name changes)
There is nothing that I can say to make things better for you, so I would like to send you my love, best wishes and a hug.
Take care of yourself.

Original poster
onlyjoking9329 · 10/02/2008 17:35

the mac nurse is sorting out a bed at the hospice as soon as one is free.

OP posts: