It has been a realllly hard week. I was still in agony and by now I can't sit long. Peter had come up from Sydney to help drag me over the line with preparation for a presentation to the Board of one of our clients. We got there. We got the preso pulled together (spread over 4-5 days) and then presented it via Zoom. Then popped over the road for a late lunch and beer. One inch off the beer cheers clink and my mobile rang.

It was Dr Reece's office....

They asked me to come up when I could, but not to panic. Dr Reece would like to discuss my latest scan results face to face. Peter had driven me for my scans on Tuesday arvo...the ones the neurosurgeon had asked for ... a detailed CT and Xray of my neck to go with the MRI I already had. This would help him determine what surgery I would have.

I said I was coming up next Tuesday to see the neuro in the arvo, so lets book it that morning.

Naturally Peter and I then ran through all the scenarios of what this meeting could be about! Particularly given Dr Reece and I've always conversed on phone, text etc. Even about the shitty stuff. Only one time had he asked me to come in, and well, that was a day that goes down in history!!

Elise messaged later on to ask how my day had panned out with the Board meeting, my CF Review, the surgeon feedback on doing my EMG muscle testing and neck brace... This all felt like days ago given the day it had been. I filled her in:

=> Lucy (CF specialist) had said:
- The SPS was interesting and a good contributor to my respiratory symptoms that don't show on her scans and breathing tests that leave everyone baffled! She said post neurosurgery I'd need to have a new sleep study done at John Flynn hospital as the spinal injury and surgery will have impacted my respiratory, particulary overnight sleeping respirtatory. Being proactive for once felt good!!
- She agreed getting me into the public system at the Mater would be a good idea for collaboration, and to save me some money. This was going to be lifelong whohar, so getting on the list now was a good idea. We discussed some options to put to my neuro on Tuesday.
- She could collaborate with the neuroimmunologist there as they are a few doors down and to share my referral with her to try and influence.
- She did say though that I’d need to keep my private team as it’s always handy having them to book for reactive and urgent issues. The public system approach is more… you can see us on this day and time in the future… ie you don’t get to choose your appointments or call up and book one.

=> The neurosurgeon had approved me moving forward with the EMG!!! Thank goodness. And to wear my neckbrace permanently, but not sleeping.

=> The neuro had got me in for Tuesday to do the EMG!! Progress is back on track!!

=> Dr Reece wanted to see me F2F and I was going to go up Tuesday but was a bit anxious given him calling me doesn't happen if it’s not important/serious.

What were the chances Elise said she was going up tomorrow for work! She said call them back and book in tomorrow (Friday 13th). She could drive me up and back. Then we could spend the weekend digesting and have a clear head for Tuesdays EMG and neuro appointment.

That felt better!!