The Waiting Game

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

  • 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
  • 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
  • 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 ?

  • Thank you so much Rily, much appreciated

    Love Inanna

    I know that I don't know
  • Morning Inanna, I am wishing you luck for connecting with someone helpful today. Of course you are stressed about the next steps of your treatment and you absolutely deserve more support from your team.  Like Rily says the NHS is a sprawling organization and different departments don’t necessarily communicate with each other. Us patients often hesitate to chase them because we don’t want to be a nuisance. My GP failed to refer me to a Urologist for 3 years after I first spotted blood in urine, and I just accepted it, partly because I didn’t really want to deal with it myself Slight smile  But it didn’t help! At least your tumors have been removed so the situation is less urgent but nonetheless you need more treatment as soon as possible. Fingers crossed for you, keep us posted. x

  • Hi H

    Thank you so much for reassuring me I am so grateful. Still trying to find my way and your message is so welcome.  None of us want to keep badgering the hospital chasing up for treatments that we don't want.  You are right about being a nuisance but that is how it has to be

    Love Inanna

    I know that I don't know
  • Rang the hospital and spoke to a very nice CSN.  She told me the MDT report was not on the system, what a surprise. She said she is going to chase it up.

    I think at the beginning of the treatment everything was so quick x now I know that henceforth it will be the chasing game

    Love Inanna

    I know that I don't know
  • Hi Inanna,I hope things will move quicker now.It is frustrating when reports are not on the system.I had to take my hospital discharge letter to the health centre so it could be scanned onto the system.They didn't believe I had cancer because they had received nothing from the hospital.The NHS does a fantastic job in so many ways but I don't feel that the communciation is always that good.Love Jane XX

  • Hooray glad you managed to speak to a sensible person! I hope she gave you her name and number?  If you don't hear anything by this time tomorrow, I'd be tempted to phone that nurse again. I'm pretty sure a decent CNS would understand why someone in your position is extremely anxious for feedback. When I was first introduced to my CNS she said getting this diagnosis was a really scary experience and I should call anytime (within office hours) I felt I needed her help. Hope things get sorted quickly for you. x

  • Hi 

    Yes I certainly got her name and number.  After reading comments here I feel I have been left to fend for myself somewhat.  The NHS is great but fails at this point most miserably, the right hand not knowing what the left hand is doing, lots of money is going to the NHS, this is something that should be a priority to be sorted out.

    Love Inanna

    I know that I don't know