How does anyone ‘do life’ if there is an almost total lack of certainty? Add to that a healthy dose of pain and – it seems – as I said to someone this morning ‘every pain medication known to mankind’ life feels a bit tough at the moment. That’s the understatement of the year, that’s for sure.
So, every week we ring the Neurosurgery Department and try to get some information about when this spinal surgery will be done. We had been told at some stage that ‘they hoped’ (they being the Neurosurgical Dept) that surgery would be by the end of January. The end of January is dangerously close and still no word.
This morning a telephone conversation with someone at the Neurosurgery Department and still no answers to be had. No indication of anything apart from being on the list. There was some talk in documents on the system that we had been ‘given certainty’ which we thought that meant surgery by the end of January. This morning the conversation was only that we had been given certainty that I was on the list for surgery.
Yet another voice on the phone saying that they make a note and give a note to our Specialist. The note system doesn’t seem to be working in relation to giving me actual certainty as to a date for my operation.
Surely there is some kind of system that can be accessed and a process to be actioned so someone knows something to tell somebody when this somebody rings for information? Unfortunately, that particular process doesn’t seem to be working too well for patients like me waiting for surgery.
My world is a world of pain and uncertainly
And pills, lots of pills
And sleeping lots of sleeping – 3 hour naps being standard issue!
And fear that all the drugs I am on and the stress this is causing will make my Parkinson’s worse, sooner than it should be.
That’s it for now
Just a bit of a vent blog style!
My journey with Parkinsons 