things going downhill fast, awaiting emergency doctor.

[onlyjoking9329]

Steve has got much worse since yesterday morning. he was sick six times and he is the same today, he has a lot of swelling around his head and eye
i phoned the docs and got thou to NHS direct.
they asked if steve would go into hospital, had to say no as he wants to stay at home.
just need to get the swelling, pain & sickness sorted out.
the doctor will be here within an hour

As always, love and cake for you OJ. xx

to be honest we will get more info from the macmillan nurse. when steve had his brain surgery he was on steroids for 5 weeks with no ill effects. a while ago i joined a brain tumour forum and most people on there are on steroids and everyone on there agrees that they are fab. To be fair the consultant is lovely but we seem to see far too much of the side kick and to be honest she winds me up, i told her steve had swelling to his head, she told me he didn't i mean why would i know i have only been with Steve for 16 years the next day they couldn't get his treatment mask on so they called the very same doctor who looked at it and said oh it looks like you have some swelling she is the very same doctor who said that steve must take the ABs or he would get pneumonia and then he would be really ill i looked over at Steve and said we wouldn't want you to be really ill would we .

OJ - Please tell me to piss off if I am being too noisy, but surely quality of life is what is important now (as I have picked up that quantity is not likley to be that long).

If this is the case then surley it is better to have the steriods.

Hi OJ I'm afraid I have no advice but having seen this thread I wanted to send you my sympathies for what you are going through. You seem like a very brave strong person x

thats what i think too, i mean how can we make fab memories when he can't even stand up and is in pain.

Hi oj, is there any way you can stamp your foot and demand to see the consultant. The side kick sounds like she is on a power trip, anything you say she will say the opposite cos she can. Thinking of you as uaual

I agree O.J. you sound like you feel they are not listening to you. YOU know Steve best,you deal with him on a day to day basis.

thing is steve tells the doctor he has been fine cos he can't remember what he has been like and if i say he hasn't been fine Steve disputes it. the only time Steve will tell the doctor he is feeling bad is if he is feeling bad at that moment.
steve can't remember having the emergency doctor out he can't remember any of it and if i mention it he gets very defensive. he was telling his brother that he hasn't had any pain or sickness at all ever his mum was here the other weekend and saw him being sick three times so at least steves brother can see that i am not making it up and that steve can't remember, trouble is the doctor seems to believe what steve says.

Is there any way that you can get to have a chat with the doctor without Steve being present to express your concerns O.J.?
They must realise what Steves symptoms are surely, and that people with his condition don't always recall their own symptoms and they should ask their partners/carers opinion? What is the matter with these Doctors!!!

I really think you need to try and see the consultant on your own - to explain what you are telling us. Make them aware that Steve is not giving the whole picture - probably because he is not himself aware of it.

Could the MacMillan nurse sort things out for you and Steve re: steroids?

we won't have to see the hospital doctors for a while once steves treatment has finished next friday
we will make more use of our own gp and the mac nurse.

i think it would be good to see the mac nurse on my own, steve doesn't think i should need to see her without him.
she is coming tomorrow so will speak to her then, she did say i could go and meet with her at her office but i am not sure about that as her office is at the hospice.

How is Steve today? and how are you?
this situation just seems too cruel.
glad Stve is getting too the end of this round of treatment, what happens next treatment wise will he have a scan to see if the Radiotherapy has shrunk it? will he have more radiotherapy and chemo?

OJ- My friends aunty works at a hospice nad it is a very wonderful and happy place. They offer respite care, but also wonderful therephys for all the family there.

It might be nice to visit the nurse there, as you will see what a nice place it is at.

OJ what a tough situation but you know my feelings r/e the steroids. I cannot understand it as they never even considered reducing them for my mum as they help so much.
I would def see the Mc nurse and explain the problems your having. As for the hospice i had all the same reservations as you and that is where my mum spent her last few weeks and it was a lovely place and the nurses were magnificent. They know exactly what your facing and i think it would be a great shoulder to offload on.
Remember many paitents attend a hospice daily as do their families contrary to what i thought it wasn't actually a place full of very obviously ill people unlike the hospital !
Keep us posted and take care x

{{{{{{{}}}}}}}

Steve will not be given any more radiotherapy six weeks is the most they will give for the brain
once the radio has finished the tumour will continue to grow our best hope is that it has shrunk it enough to give him more time.
i am sure the hospices are lovely but i don't feel i can face going there yet silly i know but it seems like admiting that steve is going to die which is daft cos i know he is i just can't face the hospice just yet. it seems to final IYKWIM

oh onlyjoking, such a shit situation for you all.

OJ

Just seen this.

If hospice where I think it is (HH?) I spent 6 months working there before moving back up here and it is fab,even if you do not want Steve to go there permanently they do do daycare for respite.Worked with fab nurses called Lindsey and Elise and Dave from memory (was 8 years ago)Very caring and patient centred.Much better than general NHS ward.Was private and nhs funded.I can understand your concerns though,about the permanence of it,the admission of dying.I took a guy to see the footy, County, on one of my days offone of his dying wishes!!They arranged all sorts for patients.Pain control and emotional support excellent.Very very caring consultants and staff.Many hugs xxx

it feels like shit at the moment but tomorrow is a new day and will be better.
steve hads been crap today so i have upped the steroids. i want him to be as ok as he can be and theres not a lot of quality of life ig he is in pain and feeling crap.
wrinkly yesit is HH but steve wouldn't go there willingly ATM and nor will i.

You are in my prayers OJ x

Oh OJ. Wish there was something I could do to help.

Hi OJ,
I cannot sleep tonight, something you must find difficult too. I just cannot imagine how hard it must be, I know we all keep saying how strong and brave you are being, but you must be so exhausted both mentally and physically, hope you are all sleeping well, xxx

today is a new day, it will be better even the sun is shining

It is a nice day out isn't it? I will enjoy the walk with the dog this morning!!!