Chinese whispers

Hi everyone,  I hope I find you all relatively well and cheerful.  I was diagnosed with Glioblastoma a couple of months back, if it had not been for the initial talk with the neurosurgeon I doubt I would know yet what was going on.  He told me in no uncertain terms how long I could expect to survive and what the treatment is and what I could expect from it.  Since then however no one seems to be willing to tell me anything.  Any information or treatment I do get is like Chinese whispers, I ask one person who says she will talk to someone else who will give me a call.  Often the call comes when I am travelling to an appointment just down the corridor from where the call is coming from.  My wife has been excellent and would accompany me if I was to see a nurse as my memory is not what it was but even she finds remembering what is said in phone calls a challenge.  To get more meds is a similar procedure, the radiotherapy lot can give me somethings but not others, if they can’t give them they email my doctor so I can pick them up at my pharmacy.  They did not say they meant the hospital doctor and hospital pharmacy so having run out of nausea meds I phoned my gp only to be told they new nothing about this, back at radiology they decided to tell me it was the registra oncologist and the hospital pharmacy, that I did not know existed.  Two days ago I finished my standard radiation therapy despite having spent seven weeks being considered for a trial of a new therapy and drug combination.  I was waiting for the therapy when I saw the registrar oncologist in the corridor, despite me being due for a review she just smiled and waved and rushed off in another direction.  Later that day one of the Kates (one of five oncology nurses all named Kate) phoned me and asked if I was OK. presumably she will tell one of the other Kates and it will eventually get back to Catherine the oncology registrar who was running the trial.  Perhaps she has lost interest now I am not on the trial.  The neurosurgeon pulled out all the stops to get the debulking done as soon as possible as prompt treatment has better outcomes.  Messing on looking at the hydrogenation state of my tumour delayed my therapy by just under seven weeks until I was in a panic.  Catherine apologised blamed labs at other hospitals but did say that the latest CT scan showed no advance of the tumour.  Now I must wait another two weeks before any other consultation which will involve a three hour journey each way without any help with transport now.  Let’s just hope the railways are running that day as I am not allowed to drive and my wife is not confident driving in big cities.