Really annoyed! I wasn’t told that I’d have to have GSF Injections daily for 2 weeks of each Taxotere treatment! You’d have *thought* this might have been mentioned to me before.
I was talking to a lovely lady I’ve met before (who’s a year older than me) today who is on Taxotere and she said something about starting injections and I’m going “Eh? What?” - asked one of the chemo nurses who then filled me in on it!
Great - what else are they not telling me about?
Wanted me to go back to hospital tomorrow to show me how to inject myself into the belly - OK, but I wasn’t aware in advance and am strapped for cash and don’t have the money for taxi fares there and as it’s short notice and all people locally work, I can’t ask for help.
Fortunately I griped about it and they agreed to arrange a district nurse to come out to me and show me tomorrow.
But I had to press on WHAT the injection was called and WHAT IS DOES/IS FOR - again, looked at with surprise for asking… Calderdale Royal is slowly driving me nuts with the small town mentality again…
Grumble grumble. They also seemed surprised I’d rather do my own injections than go all the way to the hospital or the doctors daily for 2 weeks when I have no transport and no cash! Oh, and I’ll be knackered too.
Yeah, you and me Lady Penelope!
I really do see why my Mum wanted to be moved over to Cookridge years ago, I thought she was a bit mad to be travelling all that was unncessarily ---- but she found city hospitals much better.
Fortunately for me I’m over it in a few months but if I ever had a return and had to go for life, I’d probably want to move as it is driving me nuts. I think they are all lovely people but it’s the lack of info, lack of consulting, surprise at questions! I feel like I’m being a pain asking (not that it stops me)
Also every single time I’ve gone for chemo, despite going in early for my bloods the day before and it being marked “Urgent”, they NEVER have my chemo drugs ready for my appointment, every time I’m waiting up to an hour for pharmacy to get them over. I grumbled a bit about that today as treatment is only an hour - and she said “Oh they’re understaffed at the moment with people on holiday” and I thought, oh right, for all 4 treatments then…
I tell you, in private treatment I’m sure this wouldn’t happen. Yeah I know we should be grateful for getting “free” treatment, but we do pay, though I’d like to know how much per person this costs and how much it’d cost privately to see the difference
No idea of cost to be treated privately, but apparently taxotere is £1000 a bag. We have had thousands spent on us. They should be informing you of what is going on though.
I had to ask for my injections every time I had chemo as the onc failed to write it on the notes. He wrote them on at my request before the last one. So each time the nurses had to go and check and then I would have to wait for them from pharmacy. I had to go back next day on one occasion. My OH did them at home - only for 5 days though - days 5-9 inclusive. They are easy to do.
Just thinking of people in America who pay monthly for cover and how this compares to what we actually pay for the NHS per person.
I know that in a lot of government run organisations there are a lot of costs involed in administration that need modernising etc.
There are probably a lot of savings to be made there. Not that private businesses are always fantastic in that respect either.
GLad to hear it’s not a big deal but either way I’d rather do it myself at home than traipse to doctors/hospital with no transport and noone to help me out.
Just annoyed that I’m having to push and find out things myself and query.
I was told that they have to make the drugs up in pharmacy each time cause they’re adjusted slightly if weight changes… good for you, being persistent… not easy though is it, when energy levels are low and we feel vulnerable anyway… I don’t have those injections before, just one afterwards… lucky me I guess! what I wasn’t expecting was the raw mouth…
I have had to inject myself daily for 10 days after each session. The district nurse showed me how to do the 1 st one and then I have just done them myself without a problem.
The drugs have to be made up in the pharmacy the morning of the treatment as once made up they only have a 24 hour shelf life before they have to be discarded when that is £1000 a bag they probably want to make sure you are there before risking making it up in case for some reason you can’t make it and they end up throwing it away.
The bag I have has a 3 day expiry date on it - they told me they make them up the day before that’s why it annoys me, I’m just bugged today by it all I guess - can’t stand seeming incompetence that’s all.
3 day expiry??? Interesting! If you read the insert leaflet I am sure it only recommends 24hours and I know mine is only 24 hours as the nurses read it all out and record it before giving it to me.
There is a sticker on each IV bag and it has the expiry date of the drug on it - 3 days.
If they said they have to make them up to order and when you’ve arrived then fair enough, but they said they do them the day before which is why I get a bit bugged, who wants to wait around all the time in hospitals.
That’s exactly what I was told too Laura; I had to wait many hours each time - even when I only had a short wait to see the onc, it didn’t seem to make any difference- time had no meaning.
I did complain to the chemo staff in the end but it was evidently not the done thing- I was made to feel I was behaving badly as everyone else waited so patiently! I was also given to understand that all the delay was down to the dispensary staff - though I do not believe that that was actually the case.
My OH made me laugh as he was walking out of the door for work this morning - said “Hope everything goes OK with you learning how to stab yourself today” I said “Yeah, me too - I’m thrilled I have to self inject for 2 weeks as well as everything else - wondering if theres anything else to come now - LOL”
I’d much rather do it myself than have more medical appointments. Dreading Rads because it’s every single day for 20 sessions and it’s at St James in Leeds, at *least* 2 hours a day travelling and no idea how I’m getting there as I’ve heard patient transport is dreadful and can be a round trip of 7 or 8 hours!!! Can’t do that every day!!!
There is, but it goes all over Calderdale first apparently. I’m going to give it a shot to see for myself at least once. If it was once a week I could perhaps tolerate 8 hours, but not every day for 4 weeks with only weekends, too too tiring and despressing! xxx
that’s why it annoys me, I’m just bugged today by it all I guess - can’t stand seeming incompetence that’s all.