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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:
Original poster
onlyjoking9329 · 05/02/2008 13:06

i will give backup a ring, i won't be able to go and see them as i will have steve and his mum with me and his mum is only just getting her head around it.
i am hoping that we won't be four hours like we were last time as steve won't cope with all the waiting around.

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Winetimeisfinetime · 05/02/2008 13:11

Oh xpost - I've just seen your answer. The consultant I had to tackle did seem slightly taken aback by my question but knowing how we were floundering and realising that my stepdad couldn't take an active role in the decision she did answer the question. It's a shame if they won't tell you what they would do as even so it would still be your decision ultimately but it might just help to take some of that awful responsibility away from you, without them actually spelling out what they think you should do.

cookiesandscream · 05/02/2008 13:41

today sounds like it is going to be tough on you all Oj.
sending your peace with whatever you choose.

MummyDoIt · 05/02/2008 13:57

OJ, I really feel for you. It's impossible situation and there just isn't a 'good' solution. My dad spent the last five months of his life tube-fed to buy him more time, barely able to talk and unable to leave the house, and I know he only did it for my mum's sake as she wanted him around for as long as possible. The last conversation I ever had with him, I asked him how he really felt and he just turned to me and said 'I've had enough'. Sometimes the quality of the time just isn't worth it. You know Steve best. You know when he's had enough. I'm sure you will make the right decision for you and Steve, no matter how hard that is.

TripleyTigger · 05/02/2008 16:49

O.J we are all thinking of you.x.x.x.x.

(I found Bacup were really supportive x.x.)

cookiesandscream · 05/02/2008 18:25

how did it go Oj?
thinking of you.

TotalChaos · 05/02/2008 18:28

hope they didn't keep you and steve waiting too long. thinking of of you.

Original poster
onlyjoking9329 · 05/02/2008 19:22

well we are back and steve is settled in bed, appt was 3.15 we were seen at 4.45.
the doctor thinks steve should give the chemo another try. she says all his problems are down to eitherthe steroids or tumour growth and lack of sleep, steve just said you know best doctor. steve will have a scan within the next four weeks.
i made sure the doctor wrote him up for the right sickness meds this time, went to pharmacy heard the pharatist talking about how the doctor had writtin someone up for the wrong amount of chemo as they are in increments of five, it was steves, when he shouted us over the doctor had written him up for 268 do they had changed it to 270, problem is he was on 370 last time, so either last time was wrong or this time is as he should be on the same dose.

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TotalChaos · 05/02/2008 19:25

oh christ that was the last thing you need on your mind OJ, that the doctor could have been cocking the doses up.

robinpud · 05/02/2008 19:31

Oh OJ, what an afternoon. It sounds like talking to Bacup or perhaps the MacMillan nurses at the hospital might help. I can't imagine how hard it is to watch your dh struggle to cope with the chemo, but at least you know that you are doing all that you can and don't sit and think.. " what if.." Perhaps this time with the right chemo and anti emetics the chemo might do its thing and buy you all the time you so desperately deserve.

Original poster
onlyjoking9329 · 05/02/2008 19:47

oh and on the way into a parking space at the hospital i smashed my hire car

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bossybritches · 05/02/2008 19:53

R&C awaits xxxx

notjustmom · 05/02/2008 20:02

This reply has been deleted

Message withdrawn at poster's request.

Original poster
onlyjoking9329 · 05/02/2008 22:26

i will try and speak to the mac nurse tomorrow if not she is coming on thursday anyway

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lillee · 05/02/2008 22:54

OJ you still here? Only just logged in and read all of this. Am so so sorry you've had to go through all of this.

If you are still up and want some company with that R&C Bossy provided then i'm here xx

cookiesandscream · 05/02/2008 22:57

sorry today has been so difficult i wished i could promise you brighter days ahead, but OJ you will find some sunshine behind those dark clouds.

WanderingTrolley · 05/02/2008 23:07

OJ I haven't posted on your threads much lately, but I think of you, Steve and the children often.

I'm sorry today was a day of insult added to injury - the last thing you need is to be dealing with the hire car. When do you get a new car?

Can you phone the dr and ask him to double check the doseage - or could your gp or another dr do that for you?

Thinking of you.

Original poster
onlyjoking9329 · 05/02/2008 23:31

i am picking up our new car on friday, i still have to sort out a steve sitter yet thou.
i don't want to phone that doctor we have had a few problems with her, i am hoping the mac nusre will be able to sort it out.
i am wondering if the dose was too high last month.

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triplets · 06/02/2008 00:09

Do you know what made me feel so cross for you, making Steve wait all that time for his appt! It must be such an effort just getting him there anyway, why oh why do they treat us like numbers!

Original poster
onlyjoking9329 · 06/02/2008 07:55

the wait was awful for steve he rested his head on my shoulder for a nap but it was very noisy there. sadly we waited just as long last time, next time will be longer as his appt is 4.15 which means we won't get to the pharmacy to get his meds cos they shut at 5. which will mean going back the next day for his meds a 20 mile trip.

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LilRedWG · 06/02/2008 08:45

(((OJ!)))

geekgirl · 06/02/2008 08:55

OJ, don't have anything helpful or useful to say. Just really sorry you're having such a shitty time.
Bet the car incident was just what you needed to round things off.

Original poster
onlyjoking9329 · 06/02/2008 09:40

well that 2 insurance claims i am sorting out now the other one wrote my car off but not my fault.

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TotalChaos · 06/02/2008 09:46

can you speak to mac nurse to retime the next appointment, it's really not fair on you and steve to have to waste time unnecessarily like that?

Original poster
onlyjoking9329 · 06/02/2008 11:37

they only do the clinic in the afternoon from 2pm.

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