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Original poster

Steve not very well at all today, Doctor has just been out to him

201 replies

onlyjoking9329 · 08/09/2007 20:56

he was in a lot of pain yesterday which has not improved today. he is much more confused so it is difficult to find out what is going on. his sight is much worse too and he is quite wobbly.
The doctor phoned the hospital and talked to them about it. the doc has given him a morphine injection and he is to go back on the steriods, which he has just been weaned off. the doctor will phone in the morning to see how he is. he is tucked up in bed now.

OP posts:
LilyLoo · 09/09/2007 11:45

glad he had a comfortable night and the pain has gone today hopefully you will be able to get that under control. Glad to see you reconsidering seeing the mcmillan nurses too

Original poster
onlyjoking9329 · 09/09/2007 14:10

he has gone back to bed but not in pain so much as tired.
WRT the nurses it's not that i don't want them involved it has more to do with the fact Steve doesn't want/isn't ready? for that step. i try to respect his wishes and let him have some control over what happens , lets face it he has little control on stuff these days.

OP posts:
Charlee · 09/09/2007 14:25

Thinking of you and STeve and your children OJ. x

LilyLoo · 09/09/2007 14:28

i know what you mean oj. It's a tough decision isn't it but maybe if you get chance to talk to the oncologist or doctor they may be able to help him see how it could benefit not only him but all of you. Glad the pain subsided.

mummydoit · 09/09/2007 14:42

OJ, DH and my dad are both exactly the same about the Macmillan nurses. I think they associate it with hospices and dying and they're scared. Thankfully, DH isn't at a stage where we really need help so it's not a problem for me but I know my mum is really struggling. Dad had a stomach tube fitted recently and she has to clean it and administer his feeds, plus the wound got infected so she has to clean and dress it. She could really use some help but Dad is so against it. Like you say, they have so little control over what is happening that you just want to let them have whatever they want. It is tough on you, though. I really do feel for you.

gess · 09/09/2007 14:50

oj- are the district nurses going in?

gess · 09/09/2007 14:55

sorry I just ask but my mum is a district nurse and I know a lot of her patients have cancer. She often seems to develop close relationships with the families. I know that she can't do all the things that macmillian nurses do (I think they can access better pain relief etc) but the district nurses do seem to get very involved. I don't know who 'summons' them whether its the hospital or GP, but they can help with pain relief etc. I do understand about Steve needing control, but you need some help as well.

Blandmum · 09/09/2007 14:56

Via the GP, I think, gess. The MMN, can also get them 'in'.

tigerschick · 09/09/2007 15:02

Missed this yesterday, glad to hear that he had a reasonable night.
Hope that you have some better news very soon x

RubySlippers · 09/09/2007 15:03

just seen this
hope you had an ok night
thinking of you all
x

Neverenoughhandbags · 09/09/2007 15:30

Onlyjoking, I'm so sorry to learn of your situation.
MacMillan can offer YOU support without needing to see your DH. Do you think he would object to that?
I hope he feels a bit better today.

Original poster
onlyjoking9329 · 09/09/2007 18:17

thats the thing Steve just doesn't do having help, it was a nightmare getting him to agree to the direct payments and respite families for the kids. took him years to accept DLA for the kids too. I think he will come round in time. just don't know how much time he will need. i think he is gonna have to get much worse before accepting help.
i now have some MAC suppport (online group)
we should be seeing the, oncologist every tuesday once treatment starts, it almost 4 weeks since we saw him. things will fall into place i think.

OP posts:
JSo · 09/09/2007 19:13

OJ..been following this thread and just wanted to say you are doing a fantastic job looking after hubby and Steve so well...(I know how hard it is looking after someone and trying to hold a family together) My dad was diagnosed with a brain tumour and there was 8 of us looking after him!!!...8 siblings (mum found it very difficult to cope with) so in comparison you are a REAL STAR doing it alone..we found we just had to bring Marie Curie help in..which was a life line as we needed 24 hour constant care and he was a large man on Steroids..you need to get some help from the macmillian team..they will be so discreet could you not just tell Steve they are nurses from the hospital???....cos they are really..he may accept it better..we had to do this with my dad. You have my greatest respect and I think of you and your dear family every day..hope Steve has a good night tonight..and you too my dear.

JSo · 09/09/2007 19:28

did mean to say Kiddies and Steve so well!!!

Original poster
onlyjoking9329 · 09/09/2007 20:13

i think for now it is just usful to have someone to talk to about the treatment and stuff, steve doesn't mean nursing care at the moment and i hope that when he does need nursing care that the meds will make him less anxious. if the confusion memory gets worse i will be able to tell him anything

OP posts:
toomanydaves · 09/09/2007 20:24

Just wanted to add strength and support. Horrible situation. Really feeling for you and hope you get the help you need. Thank god for MB, eh.

LadyVictoriaOfCake · 09/09/2007 20:27

oj, i know steve doesnt do help, but iam getting worried about you. you need some help and support, and its one thing keeping everyone else going, but you need some help to deal with this. mn is a wonder place to offload (heck i've done it loads) but my main support in RL came from our lovely district nurse. even if she just pops in to see how you are doing, she doesnt have to 'help' but ithink you need that contact in place so its there when you do need it.

fransmom · 09/09/2007 20:36

hi oj xxx i thinbkit is time that you thought about geting some help for yourself. i don't know what steve is like as a man but would it help if you worded it such that the help isn't for him but for you? and maybe it would help him knowing that you had some support in rl, maybe he might feel easier if it is said that way do you think?

(((((((((((oj and steve and their dc))))))))))))

Hulababy · 09/09/2007 20:40

I don't know what to say Just that I am thinking of you all and hope that you can get some help and support as you go through this.

mymatemax · 09/09/2007 21:19

I can understand you needing to allow your dh to make his own decisions, would he consider asking for a referral to the pain control nurse/dept at the hospital.
they deal with everything from chronic back pain to patients with cancer & they'll take advice from macmillan or other specialists if its not something they've not dealt with before.
I hope you both have a restful night. x

Original poster
onlyjoking9329 · 09/09/2007 21:24

i think i am gonna see about the mac nurses for me at least, steve may speak to them at some point, i think it is a typical male thing to been seen as being strong and not needing anything,
theres a lot of support on the brain tumour forum but also a lot of sadness, the people on there have lived with it longer and are very matter of fact about it all. i am not at that stage just yet.

OP posts:
fransmom · 09/09/2007 22:02

no one would expect you to be oj. you are a wonderful lady ((((((((((((oj))))))))))))

Original poster
onlyjoking9329 · 10/09/2007 10:07

Steve had a good night only got up once
we are waiting for a phone call for him to go back to hospital for scan simulation.

OP posts:
toomanywrinkles · 10/09/2007 11:22

glad to see steve had a better night, this must be so difficult for you all, you are doing so so well. I feel very humble reading your posts.

black31cat · 10/09/2007 11:32

Havent posted before but just wanted to send hugs to all of you.
[[[[[[[[[[[[[[[[[[[[OJ]]]]]]]]]]]]]]]]]]

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