debs
i really need to get hold of you but don’t know how?
thanks
I noticed this thread, but there is no message. Is Debs ok, as there is nothing posted.
Jules
Jules usually when posts dont show up for some time it is because the poster is in moderation!
Dawn
xxx
Hello its me,
I did not start this thread, I know I am not very good on computers but honest I did nothing!
A bit fed up Lisa has left Big Brother!
Love Debsxxx
Hi debs good to see you. I so badly want to see Rex kicked out and really embarrassed. I enjoyed mikey giving him what for tonight. Sad ain’t I LOL. But with all the probs with my hip and spine after the rads it has provided me with endless entertainment these last few weeks :). How you doing.
Dawn
xxx
sorry dawn i was being totally blonde I realise what you meant now, its not been approved by the mods. lol silly me but thanks for explaining, hope your ok.
Debs glad your ok was a bit concerned when it came up that something might be wrong.
Thanks Jules… blimey if I hadnt logged on till morning I could of been reading my obituary lol.
Dawn… I know what you mean about rads I had it just as I started taxol in Feb hip, spine and back of neck cant spell osophagus it was agony for about 4 weeks. I could not speak and when I got my voice back I didnt recognise it. Still dont.
I think rex is a prize prat I hope mikey wins, how sad am I?
Love Debsxxx
lol Oh don’t say that Debs, but the way you said it did make me giggle!! Glad your ok.
Jules xxx
Hi bbcfamily,
I am here how can I help?
Love Debsxxx
my partner (in plymouth) needs to get avastin, quickly
bone mets for the lasy 18 mths,
august scan shows liver and lung mets, verterbrea close to fracturing and causing paraylisis
onc went on holiday and left application to be put in with another oncologist, long storey but the application didn’t get put in.
The pct meeting is wed 3rd sept and team are saying applications need to be put in 2 wks before meeting, so Steph has " missed" the meeting through no fault of her own. As you probably know, meetings are every 4 weeks. Steph may not be able to hold on for another 5 weeks, she needs the funding now.
I just wanted your advise as you had a little battle with your pct?
She’s been having constant chemo (with very little breaks) for 4 years now. I’m tired, she’s, well, this is our last hope and it’s gone if we don’t get in for the Wed meeting.
Ali
Hi Steph and Ali,
you still have time if the meeting is Wed but you need to act on Monday.
Write another letter with 2 copies one to onc and the other to the BBC outline her history every little detail. Dates of treatments, scans and results, any comments made by onc regarding estimated time left if he has said running out of options etc. Hand deliver on Monday ask secretary to sign to say they have been given letter by hand, ask if there is a meeting on Wednesday and tell her it is urgent that this is brought up, ask if she would ring you after meeting and confirm Stephs case was mentioned, also to confirm in writing.
It is all a bit of a fiff faff but could be well worth it. Also with the co-payment issue still being discussed and NICE changing its policy on other drugs you just never know. Has your onc mention avastin? If he has you stand a much better chance.
Good luck I hope this helps.
Love Debsxxx
ok, oncologist has said " he will get avastin for Steph. I am head of oncology and if you need avastin i will get it for you."
He went away on holiday and left it with another oncologist to put in application. The other oncologist never turned up for work so the application got forgotten about. I chase Stephs oncologist (or secretary) on Tues about the pct meeting as we had not heard but knew it was soon.
Trying to track the man down was a nightmare as it was, anyway, twice last week I go to hospital purely to find her oncologist, as we had still not heard. I ask everyone i know up at hospital, “what is happening about the pct meeting??”
Thur - Finally get a call from his secretary to say he is still going through her notes.
Fri pm i get a call to say we have missed Wed 3rd Sept meeting (proberably) but he will try and get in, applications should have been out in 2 weeks ago… What!!! That’s not our fault.
I also have been told that he will get pi!*sed off if i chase him about the application!?.. Cos he’s a busy man…
So Debs, do you have any advise as to what i do now please? I know you say the application can still be put in on Mon but everyone, including the top man at the hospital are saying otherwise.
Great if i get a phone call Mon to say, no problem Ali, the application is still going in. I want to know last week what i need to do to definitely make sure this application is going in on Mon.
Steph is too ill to fight, I’m on my own.
I’ve been trying to ask about this meeting since Tues. The oncologist has everything he needs, has had it since he spoke with Steph on her liver mets diagnosis on the 1st August.
Ali
I can only tell you how it worked for me, others on here have not been as lucky and I really do feel the media attention helped in my case. Of course I know their interest was because they had said I could co pay and then they changed their minds.
I really do think by taking the letter and handing it to the secretary to whoever is in charge of the pct(not oncs sec)is the best option.
It is really frustrating dealing with these people my partner got really cross and he is a very even tempered man I had a great big hole from biting my lip.
Ali I really hope they sort this out for you.
Best wishes to you and Steph.
i forgot to mention, i handed the letter of stephs history, as you said to do, her recent diagnosis and a few other bits and pieces to the oncologist sec on thur.
i just don’t want her to miss the meeting on the 3rd
i’ll let you know if i get a phonecall tomorrow
Ali