Hi all, I’m back! had a fab week in Rhodes with husband, stepson, daughter in law and 2 grandchildren, I actuallt felt quite normal! Then as we took off to come home burst into tears as now what I have got to look forward to and it is real!
Alison, you must be so relieved that is fab news!!
Freddie, wot a nightmare I think you are right to be so angry!
Nicky doesn’t sound like you had fun either!
Mary hope you are ok after 5th dose nearly there now!
Hope you all have a good meet up!
Good to be back on here! Love Debs xxxxxxxxx
Hi Debs, welcome home, glad you had a good holiday - it’ll set you up for the next step in this silly dance.
Thanks Susanne, thats wot I’m hoping!! But feel quite down now, it was good to sort of forget for a week! xxxxx
ahhhh debs, welcome home and glad you had a good break…take care, mary x
we’ve been a bit quiet on here! Hope everyone is ok?
love debs xxxx
Hi all
Welcome back Debs, glad you’ve had a great holiday and it’s lovely to have you back.
I can’t speak for other but I’m okay. I’m feeling a bit down though and sometimes I don’t like to verbalise it on here as I often feel I’m always fussing and moaning.
I’ve been trying to chase my referral appointment and was told they would chase it up yesterday and was promised a phone call last night. Surprise surprise it didn’t come. So I had to chase it again and they blamed it on the other hospital I’m being referred to. I was told they faxed the letter today and that I should here something this week.
It has really upset me as I now feel forgotten. It is weird how it has affected me really.I’ve decided to apply to read my hosital notes so that I can be sure I’m in the know about everything.
Anyway enough about me…how are you and how is everyone else??
Love Freddie xxxxxxxxxxxxxxxx
hi
really sorry freddie that you are having this trouble on top of everything else, no one thinks your fussing,and we all look for the day when they sort atlease the appointment side for you,
hugs to all julie x
freddie - its so frustrating all this without extra rubbish…hope it gets sorted for you soon, mary x
ps give me a bell if you fancy achat anytime…
Hi freddie, sorry your feeling down. The waiting for EVRYTHING is the worst thing about all this. Sometimes it is so isolating, no one knows unless they have been in this possition. Its not moaning and that is what we are all here for, to share this experience with.
(((((hugs)))))) freddie
Luv Pauline x
Oh Freddie, you have every right to moan, and here’s the place to do it. They really don’t seem able to find their way out of a paper bag when it comes to referring things - it warns me that when I move to Devon I’m going to be all over them like a rash to transfer my records.
Freddie
Don’t know what to say - nothing goes straight forwards, makes you wonder if “they” have any insight on how difficult this whole situation is - the dragging on for results is bad enough…but when appts don’t even happen…you feel forgotten, lost on the system…appaling doesn’t even come close.
Try and stay positive, sure that is easier to say than do, you’ll get there…you’re a star,
Lizzie XX
Freddie, hope you are feeling better, you shouldn’t have to chase up appts and everyone else says you can do without it! Moan on here as much as you like and pm me for a good old moan if you want to, it helps to share!
love debs xxxxxxxx
Hi everyone
Thanks so much for all your support- it truly does help.
GRRRRRRRRRRRRRRRRRRR…
Well after waiting for the post again today , nothing came. So I rang the other hospital where I am due to be having the recon. Low and behold they still have no record of me and no letter of referral ,faxed or otherwise! So the lovely, helpful secretary has now decided to put the matter in her own hands and sort it out for me.Thank goodness someone is listening to me and repared to do some chasing. This is driving me now. My guess is that I still won’t get an appointment for another two weeks on top of the ‘wasted’ three weeks that I have waited for nothing. Then, I guess I’ll have to wait again for the op itself. This is driving me crazy!
I am now beginning to worry that the remaining DCIS cells could be turning at any point. Pariticularly as I’m having funny tingling sensations again which led me to discover my lump of DCIS in the first place.
I’m so frustrated,
Love Freddie xxxxxxxxxxxxx
Debs so glad you had a good holiday.
Freddie I really don’t know what to say! “Can’t beleive it” just about sums it up! Hopefully things will get moving now and maybe they’ll take into account how long you’ve already been waiting.
Nicky x
Hi all
The lovely helpful secretary from the other hospital has just phoned me back. But…
She has spoken to my hopsital and they are actually writing the letter of referral today! They can’t send it though as they need the consultant’s signature who isn’t in until tomorrow.So I was lied to on Monday when I was told they had faxed it!
I am so angry . Should it really be up to me to do all this chasing?!All this time has been wasted when I thought things were moving forward.
Love Freddie xxxxxxxxxxx
oh freddie, do they not realise what you are going through. We are just a number to them, not a person going through hell. You shout on here all you like, we will listen and understand. Big (((hugs))) to you freddie
Luv Pauline xxx
You know…just makes it worse …why do they fob you off with lies? Really unacceptable, bad enough that the admin is lousy, but then they compound it by telling you glib untruths. Not on, Freddie, really is about time things went smoothly for you, it’s been a tough ride so far.
Please do not dwell on “cells behaving badly” - they’ll be sorted, you’ll be fine - I know it’s frustrating for you when things aren’t moving forwards, but stay focussed.
Sending (((((hugs))))))
Lizzie XX
Oh Freddie, I am so furious on your behalf! At least now you have hopefully found an ally in the helpful secretary. So hopefully the letter should arrive tomorrow? Will the secretary ring and tell you as soon as it does? Thinking of you…please post as soon as you hear won’t you?
Alison
XXX
Hi all
A BIG BIG THANK YOU TO EVERYONE!!
… for listening and sharing some of my anguish. I was beginning to think that I was expecting too much and being unreasonable in my expectations of the system, but you’ve reassured me that I’m not!
I rang and had a rant at my consultant’s secretary but then felt a bit mean as it wasn’t acually her that had told the ‘lies’ and made the errors.She has reassured me that they will fax it tomorrow . The ‘lovely helpful’ secretary at the referred hospital has said she will be extra vigilant to look out for the fax and will contact me when she gets it.
So finally I feel things are on track again.
Hope you guys are all okay too?
Love Freddie xxxxxxxxxxx
Hope it gets there tomorrow freddie and then you write a letter of complaint! You shouldn’t have to do all the chasing its so bad! Hopefully it will get moving again now, take care love debs xxxx