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Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

The Waiting Game

Inanna
Posted by

Hello one and all

On 16 December I saw my surgeon who told me that the MDT were meeting the next day to discuss me.  I have still not heard from Southend Hospital, would be grateful for some advice as to how long I should wait before I chase them up.

Love Inanna

I know that I don't know
rily
Posted by

Hi Inanna. There are no set time limits for these things, but 2-3 weeks is about average. It depends on workload, and sometimes we get lost in the system. I would be calling my CNS or consultant secretary by now. I always chase up my appointments as on occasions, I was not on the list when I should have been. Even if you can just get a date, it takes away the anxiety of waiting for the post everyday. I hope you get some good news. Best wishes. 

Best wishes to All,   rily.  What is a Community Champion ?

Inanna
Posted by

Hi Rily

Have taken your advice and left a message for the Consultant's sec. Of course not spoken to her, she was not available, are they ever.  Will let you know how I get on

Kind Regards

Inanna

I know that I don't know
Herothedog
Posted by

Hi Inanna, definitely phone again if you don't hear from consultant's sec by about 4pm today. It's her job to respond to you. I think the hospital is being very slack about giving you feedback from a pre-Christmas MDT. I phone to get oral feedback from my CNS immediately after a MDT meeting ends. Then I always get the same info in writing, within a month, and my GPO is also copied in. It's unkind to leave someone hanging-on waiting for advice when the information is available. I appreciate we have had Christmas etc in the middle but I think the hospital needs to get on with it. Hope you get a result very soon. Sending cyber hugs. x

Inanna
Posted by

I will do that H, I have not met my MDT team yet to know who my CNS is.  If I get no joy very soon,  I will be getting a referral to a London hospital

Love Inanna 

I know that I don't know
Inanna
Posted by

Just left another message.  They are being so slow.  I said I want a response because this waiting is doing my wellbeing no good at all. They will be sick of me, I am going to be on their case now everyday.  Once they pull their finger out I can move to the next phase of my journey.  

Love Inanna

I know that I don't know
winkers60
Posted by

Hi Inanna,The waiting really is so tough.I'm keeping everything crossed that you should hear soon now that you have chased them up.Love Jane xx

Inanna
Posted by

Thanks everyone for your kind words and good advice.  When you are in the system, I can't speak highly enough of them but its just getting there

Love Inanna

I know that I don't know
rily
Posted by

Hi Inanna. Not sure if you are aware, but you don't actually meet the MDT team. The team comprises of a number of medical professionals and not all are directly linked to your case. They usually meet once a fortnight and discuss a number of different cases. Recommendations regarding your case is then usually discussed with you via a consultation with your consultant. I hope you get some news soon. Once they get the initial TURBT out of the way, things tend to move along with less urgency. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Inanna
Posted by

Rily you are a star.  No I did not know that, feeling like a silly billy.  I saw my surgeon the day before the MDT so she could not give me all the details so feel in limbo.  Good old NHS admin lol

I know that I don't know
Herothedog
Posted by

I was introduced to my CNS at that first meeting with the consultant after the TURBT when 5hey tell you it is cancer. I hope you get a response tomorrow. xxx

Inanna
Posted by

Well at least your hospital has it right.  Whatever possessed the appointment idiots to arrange for me to see my surgeon the day before the MDT, only heaven knows.  I am going to check with my GP whether he has heard anything. Whilst I know he cannot divulge the results, if he has heard and I have not, that will give me more ammo.  The Consultant's sec is never available, the CNS will probably be the same grr

Love Inanna

I know that I don't know
Inanna
Posted by

I have just remembered I was given a pamphlet with my team's details.  Whilst I have remained calm so far, I am not firing on all cylinders, that is how stress is manifesting itself in me.

Wish me luck tomorrow because I am going to try to nab him

Love Inanna

I know that I don't know
rily
Posted by

Hi Inanna. These things happen all the time. Different departments do not talk to each other and arrange appointments individually. Sometimes we have to manage our own schedule. When you do see your consultant, ask to be copied in on the notes. It helps to keep a hard copy record of what is going on. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Inanna
Posted by

Thank you so much Rily, much appreciated

Love Inanna

I know that I don't know