Steve is going into the hospice this afternoon

[onlyjoking9329]

i know he needs to be there and hopefully they can get him more stable.

You're in my thougths and prayers today as always xxxxxx

Thinking of you today

Have not posted before but like others feel a need to try and help in some tiny way.

Perhaps consider you and Steve together putting together a tape/download a cd which brings together lots of different songs/tunes which would be nice for you as a family to keep.
Not sad songs, but those which have been impt. to the two of you and also to you as a family - favourite nursery rhymes, songs you sing in the car etc. You could even ask Steve's brother and mother for input in including significant songs from his youth.

Sorry if this sounds impossible I just thought maybe it would be something for Steve to focus on if only for short periods of time, and would also be a work in progress..

Also, but re. guidance in how to approach all this with your children - Maybe you have already been told about Winstons Wish dot org which i believe offers help of this kind to families faced with terminal illness.

Take care.

Thinking of you today, OJ.

Another thing I just remembered OJ, which I don't know if it will help you, but will the hospice allow you to bring in your own pillow cases from home? My grandma was allowed, as the mac nurses said the familiar scent and texture of grandad's pillowcases might help comfort him and he slept a little easier once he had them on his pillow instead of the hospice ones. Grandad was in a private room so there was little chance for cross contamination or anything like that. Maybe having his own familiar pillow cases would help Steve sleep better too, or at least be a little familiar and comforting? (you could even sleep on them yourself for a couple of nights so he could smell you too?)

I don't know if this will help you at all. I am just trying to draw from my grandparents situation and suggest things that I saw comforted them.

Take care x

Oj, I hope this morning wasn't too traumatic for you and the kids. What can I say, hun. You must wish it was all over for Steve to be released from his suffering (I can so identify with that feeling) but for him to ask you to help him must go against every grain of your being. What a terrible decision to have to make.

Can I just ask if he is morphine at all? I know it can make you completely out of it but it also takes away the physical pain & trauma that the tumour is causing.

Also hun, you must be completely shattered. Are you able to ask your GP for some light sleeping pills. I never usually take anything to sleep at all but in such traumatic and stressful circumstances it might be something to help you on the days when sleep just doesn't come. You can get some that are light enough so that you won't have any side effects the next morning.

Finally, I know I haven't been posting long, but I just wanted to encourage you (which I'm sure others have said as well) not to feel obliged to post if you don't want to. Your 'me' time must be practically non existent now and you need to make sure the little time you get is spent on gathering your strength. xxx

Thinking of you oj. I hope you are as well as you can be under these circumstances.

xx

OJ {{{HUGS}}} No words.

I just wish you and your DCs and Steve every strength through this time

In my thoughts.

There are some lovely ideas here OJ. I wonder if you can put some photos onto a disc or laptop and take them in to Steve so that they can play through and remiond him of happier times and the things you have achieved and enjoyed together. Is there an OT at the hospice who can help to provide something for Steve to do- could he make something tangible for the children- no matter how simple it is, it will provide comfort for them in the future. My dd has a small beanie that her Grandma gave her just before she died which she treasures.
I am sorry that you spent the day feeling so sad, but these feelings are so strong and you mustn't bottle them up. You're worth your weight in rum and more. Take care.

Oj, nothing to add, but i am thinknig of you all

xx

Dear OJ, am thinking of you today and wishing you strength. I cannot begin to think of how you must be feeling today. Like everyone else on the thread, I am impressed by your courage and dignity. Take great care of yourself and God bless. Love XXXX

How did the medical go?

I don't know if you've been able to think to the inevitable but I've decided I want a humanist service and a Woodland Burial for myself. I think it's the nicest way for myself and also for those I leave behind.

I think the keepsake boxes are a lovely idea, especially if Steve finds the energy and will to put something special in for you and the DC.

A collection of photos from your life together, special memories....

I am so glad to see so many messages of support for you, with people trying in their own unique ways to help. You bring out the best in people.

Have been thinking of you today OJ. I do every day. Hope you are OK. Hope Steve is calm. Hope the medical went ok and the DCs weren't too stressed by it.

Hugs and strength to you.

A bit of a waffle post but just wanted to know that I am thinking of you.

Just wanted YOU to know that is!

Thinking of you all, OJ

I am so incredibly sad to hear of how things are going for Steve and for you and you family OJ. I can't even begin to give advice but you are in my thoughts.

thanks for all your messages, medical went well.
hospice are aggranging a meeting friday morning with me the psycologist the Mac nure the hospice consultant the SW from oncology and the kids SW, the ,ac nurse asked if it was worth inviting his mum, i said no as she still has her head in the sand and if there are desicions to be made about steves care then given that i will be the carer and she has not been very helpful then i don't want her making the desisions, and also she has made things really difficult recently and i need to be able to talk honestly at the meeting and i won't be able to do that if his mum brother sister are all there, the Mac nurse agreed that i needed to be able to talk honestly about things. the thing is steve wants to come home and if we are able to do that then we will.
i had a phonecall from my mate tonight her DH had been in to see steve yesterday and steves mum told our mate that steve would be better off moving in with her, i am very angry
steves mum knows that a meeting is being sorted but i don't think she knows it is on friday morning, i feel awful that i haven't told her but i feel that her idea of having steve move in with her is too meet her needs and not steves, i am really angry with her right now.

glad your meeting today went well.I cant believe your mil ! As if you dont have enough problems without having to put up with all this nonsense from her.

as if you didnt have enough to cope with. I guess her motherly instincts make her feel like taking over, but she has to accept that you are the person steve will want to be with, it must be hard for her, but quite honestly its tough. Thank god you are such a strong woman, you must stand your ground of course, and i am pretty sure that the nursing staff ect can see that you are more than capable. HAve to say, she sounds like a nightmare.

How is steve today?

i really can understand the motherly instincts stuff, but whilst steve has been in the hospice she has visted every day, when steve has been at home she visted once a week i have been left to just get on with it alone.
last month she took him for his blood tests at 12 and then was taking him back to her house for tea and was bringing him home at 7, i got a text at 2pm to say they were on the way back as steve anxious and stressed as he didn't know where is was.

OJ was your mil jealous of you before Steve's illness? It seems to me that she is now in any case - and it's so unfortunate because you and the kids should be getting support from her and in turn supporting her. She just makes that impossible doesn't she when she says things like that - so untrue and so unhelpful. I don't blame you for being angry, I would be too. Will pray she has a change of heart and gets it together to help you and for peace of mind for you. Take care

brfore steve was ill we were lucky if she visted once a fortnight.
i think she is jealous if i put my hand on steves leg she does the same, i am sooo tempted to put my hands down his underpants and see what she does.

OJ, I think you are wise to have the meeting without Dh's family particularly as his mum is trying to make things so difficult for you. I guess she feels like you're muscling in on her little boy and making decisions which she wants to have a say in. The fact of the matter is that you are first and foremost Steve's wife, his next of kin and as you said, his main carer. That alone should give you the sole right to make and be involved in the decisions that will come up in this meeting. Don't be afraid to put your foot down. I'm sure Steve wouldn't want it any other way.

Hope you manage to gey some sleep tonight hun. xxx

OJ, for motherly instincts we'll change that to read guilt! I dont express myself well, i think i was trying to say, dont take it personally, if you see what i mean. Stick to your guns, you are the best person to care for steve and the one he wants to care and look out for him. That counts whether he is at home or the hospice, you are doing so well holding things together like this. Ignore MIL, she can cope with this her own way, she is not your responsibility and you owe her nothing.

thing is throughout this she has never been able to look at what steve wants, she can't understand that steve wants to be with his wife and kids, she just thinks that her cooking is better her house is better she has fully lined curtains and everything she will put all of those things before what her son wants, the irony is that she went off with her new boyfriend when steve and his twin brother were 14 and left them to sleep on there grandparents bed settee for a few years until they got themselves a flat.