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

Thinking of you both OJ x
What a sad reflection on the state of the NHS that you know the cost of each medication he is given.Will the anti nausea tablets help with the swelling too?

Sorry just read the rest of the thread.Hope the consultant can give steve something to help the swelling .You're a strong lady OJ {{hugs}}.

steve has not been sick for over two hours

thinking of you all x

I don't know what to say/send other than......XXXXX

he is snoring loudly and not been sick

So pleased he is feeling a bit btter and getting some rest- severe sickness is misery making enough (as a HG sufferer X 4) without every other thing that is ging on with his illness.

And if I was near enough I'd bring you the curry- damn right mroe useful than a medal

And tastier!

HAve you got enough of the expensive meds, and do you think there'll be issues getting a repeat script if not?

Praying and thinking about you all!

Very pleased to hear about the loud snoring

we have a prescription for 10 tablets we do have some from the hospital but not many we are hoping that the consultant will agree with the emergency doctor and give us more.

Will your GP not prescribe them for you - mine did

Sleep is the best medicine....xxx

OJ,I am shocked they will not supply you with the ondansetron!It is usually used while people are having chemo but the cosultants on the ward I work on gladly supply patients with it if it is the drug that works to control nausea when people go home.It makes me very to think that someone in your husbands situation would be left with severe vomiting due to cost implications ffs.Hope thatit continues working and he has a settled night xxxx

OJ not been on all day and just popped on and saw the thread title and hoped it wasn't you.
However looks like you have it under control now, thank goodness.
You know (sadly) the pitfalls of the nhs and i agree to push for the extra steriods they do work wonders, as for the long term use entirely.
Hope that Steve gets a peaceful night and you too.

wrinklytum - are you saying therefore that if someone is in hospital the drugs aren't an issue?

No,ondansetron is routinely used as a first line with intensive chemo,whilst it is in progress,then,usually,a person will go home with a slightly less expensive anti emetic,as the chemo is completed,to control any sickness,hoWever,not everyone responds the same and some people have problems with nausea/vomiting at homne and in these circs they are usually readmitted to get it under control,or sometimes if the ondansetron is sucessful to control the nausea after chemo when other things have failed the can be sent home on the ondansetron,and bugger the cost.As OJ says it seems a bit mean spirited to deny someone an anti emetic which is a fraction of the cost of chemo!!!!

Sorry about crap spelling!!!

OJ, sorry to hear this. Sending you a virtual Red Thai Chicken curry with sticky rice. And prayers.

Sending a sticky toffee pudding for pudding OJ, and my thoughts are with you and your family

Just saw this. Glad steve is getting some sleep now. I hope you get some well earned rest too.

But it sounds to me that just because you choose to stay at home you don't receive the same level of care, or am I being ignorant?! Not everyone wants to go into hospital - I cared for a lady who was terminally ill with cancer and she so didn't want to go into hospital but in the end had no choice because she wasn't able to receive the care she needed at home.

I think it largely depends upon where you are,anecdotally.I happen to be lucky to work with extremely humane and caring consultants.I do think that there is a big issue regarding input from district nurses,Mcmillan etc depending on where you live,as to what input is available if you arenursed at home and which PCT you are in.Our remit goes across several PCTs and input is varied.Some have good support,others less so.It is the old postcode lottery thing.I would push the hospital to provide the anti emetic.

This lady I looked after had MS and cancer - she was such a delight to look after - I did her washing, cleaning, cooking etc etc plus some personal care - she was not allowed to lie down/sit back because her lungs would fill up etc and she was in dreadful pain but she always had a smile and loved to receive visitors etc.

Unfortunately it got to the stage where the care package being provided simply wasn't enough - she was being left for too long on her own during the day and never had anyone at night - it was a case that if she wanted more care she had to pay for it herself, which she could not afford.

In the end the carers/district nurses just couldn't keep up with her care and her GP suggested she went into hospital in order to receive 24hr care.

If someone's care boils down to the area that they live in/postcode etc then that is appalling, imo. Who cares where you live? If you're ill, you're ill. You can't help but live in a particular area. You've got to live somewhere! If someone not able to receive the required medication is down to cost then why the hell are we spending millions in keeping the peace in other countries? All this is beyond me.

i think a lot of it comes down to funding
steves chemo meds temozolide (can't spell it and dont want to go upto the safe to get them out and wake the snoring one) were not even funded by our PCT until the end of june. i know one family who had to pay for there DHs chemo.
i think with the anti sickness they started steve on the cheapest ones possible and will only move up if you make a fuss.

But it shouldn't come down to money. Oh this does make me cross.....