Thanks Shel and Nic.
Well the latest (get yourselves a cuppa, this could be a long one.....)
I was getting worried about what this letter I have for surgery was actually for (if it was for the main op then they needed to pull their finger out as so many other tests still needed doing and time is getting short), so I left a message on the clinical nurse specialists answerphone, and waited for a return call which didn't come. I phoned again on Thursday, still no call back. I phoned again Friday but was told that the person I was calling was in clinic all day but she would be around on Monday and the lady I spoke to would pin her down to get answers as she had seen that my op (which was actually scheduled for 31st so it
was the main surgery.....nice of them to let me know!) was now not going ahead because they needed the results of the ECG (which the anethatist had told me to keep in my own folder and not take back to him
), and the blood test, which I've had done, and also the sleep test (which no one has yet thought to organise) and a response from my Rheumatologist at my local hospital regarding my HMS and EDS. Also I need to have the IVC filter put in (again no appointment for that yet :sigh
. I kind of feel that the left hand doesn't know what the right hand is doing and that I am the one chasing all this up, which doesn't exactly fill me full of confidence.
Anyhow, the long and the short of it is that my op will now
not be happening on 31st January. In some ways I am pleased, as my youngest didn't want me to have it done before her birthday which is on 9th Feb anyway. I told the lady I spoke to that it is no use them phoning me up and saying "come in for an appointment tomorrow" as being disabled, my hubby has to arrange time off with his boss, who has to arrange his daughter to cover when hubby is away etc, so it's a bit of a performance. Hubby had also told his boss that to the best of our belief, my op was probably going to be 31st Jan, so he had arranged for his daughter to cover then, now that's all up in the air. I explained all this to the lady I spoke to. I also told her I was geting increasingly worried that so far, no one had asked about how my disabilities affect me and any extra care I may need in hospital. She said that should all be in my notes. I told her I'd written it all up myself and tried to get the anethatist to put it in there but that he told me to keep it because no one would read it anyway
. She said she will get the co-ordinator to arrange an appointment with me to go in and see her to make sure that everything they need to know is there in my notes. I just get the feeling that when I do eventually go in, I am going to be constantly needing to ask "have you read my notes about the help I need?" and ending up sounding like a whinging old bag
.
I'm still doing ok on my own self imposed diet. Loosing very small amounts (ounces rather than pounds) but getting there. Just feeling a bit fed up with all the messing around at the moment.
On the other hand, I can now stay cool, calm and collected as I manage to breathe through the mask for 10 whole minutes, but I do need to stay focused and watch the time which I find helps.
Watch this space for the next installment of this performance. Ho hum!
:banana dancer: :clap: :banana dancer: 
