Hi,
now we all know we are a pretty powerful lot and I think just occasionally we are underestimated and expected to follow orders sheeplike. Absolutely not in most cases I know and i have had great belief in my team, although I think we might all be feeling a bit unsettled by Paula’s lack of care. Well I personally am going to see my onc next week and you know I might just have to go ON and ON and ON about Brighton and how this has now unsettled me too, because I want to know if this is NHS procedure? Does my onc do the same? Oooh I am just warming up for a major hit on this team. Then I am also on the same TACT 2 trial with all that funding from Roche I believe, money counts in this game. One of our profs is head of research trials for the whole UK someone told me. Am I getting hotter!!!
Anyway like to join me in this and just say something to your team about Brighton and at the same time ask for your case to be reviewed? The very least we will do is stop the same mistakes being made for all your lovely ladies in Brighton, who I feel for as well. This must have shaken you all more than most of us.
Paula I would definitely be going for a big hit on them. I know this is far from our main point which is you, but hope that lessons being learned will at least do a little good somewhere. If we high profile you enough you will be top candidate for anything else out there in the world.
Hugs and hugs. Keep believing
Lily x x
Lily
Good on you. I won’t be seeing my onc for nine months now so this action won’t apply for me but you are right there is strength in unity.
Please keep us informed of any reaction to this.
You now have me thinking as to how I could contribute.
Margaret
Lily,
Well done you - the more we raise our voice (in unison), the more the medical profession will sit up and take notice. It defies belief that Paula wasn’t even told about an injection that could help her - no, actually it makes my blood boil to think of someone suffering when there is medication available. I have now finished my chemo treatment, so won’t be seeing my Onc for a while, but I just wanted to know that you have my full support. Best wishes to you. Jacqui
I’m with you girls - all the way - WE WILL BE HEARD
Agree with Lily200 - going public could be worth it.
Love and hugs and cuddles to you all,
Traceyxxxxx
Well done Lily. I think there’s a real case for people making this as wide as possible - we all know that oncologists participate in networks etc!!
For my part, and I’m in Brighton but under a different oncologist to Paula, I shall be raising my concerns. I rarely see my oncologist though - everything is left to the clinical trials nurse who I really like and respect. She’s great. I think the system here is so pushed there’s no time for oncologists to see us unless we demand their time - and even that’s stretched! I’m planning to express my worries however and make a few points!
I also have access to various health professionals via my work. Come September, I’ll be asking a few questions.
I shall start a different thread about expectations regards the TACT 2 Trial.
Good on you Lily!
Gill x
Hi there,
i am off to see my onc at Brighton tomorrow - i was due to see him anyway but paula’s situation has certainly unnerved me. generally i thought the treatment at Brighton was good (but how am I to know?) and I like my Oncologist (not sure if he is the same one as Paula has or not). certainly getting rads done down there was painfully slow. Paula was messed about a lot which is inexcuseable but she is hopefully getting the best treatment available now. I think to take away someones hope is cruel.
cheers
caroline
From what Paula has told us her medical team certainly let her down in the way that they talked to her and the way that they responded to her frightenly fast progression. I hope that Paula now has more confidence and trust in the care she is getting at the Marsden. And she or someone on her behalf may want to pursue a complaint.
But the rest of us really don’t know anything else about the general standard of care in Brighton and whether there are real issues. Moaning to our own oncology teams about the whole of the care in one Trust on the basis of one woman’s experience won’t help anyone.
Paual: I really hope that your treatment at the Marsden goes as well as it can do,
best wishes
Jane
Hi
anyone know how paula is
Joanne
I am here…getting ready for tests at Marsden…no sleep. shattered, scared…
Thanks all…
love always P xxx
Good luck Paula thinking of you
Love Judy x
Thinking about you Paula as everybody is and heart goes out to you.
Liz xxxx
Paula
Take care hun, really feel for you and can’t even imagine what you must be going through. I hope today isn’t too exhausting for you and you find out anything more you need to know from your team at the Marsden. I’m so sorry I can’t be of more help but will be thinking of you all day.
Nicky xx