WHMP: 31 July 2017

It’s been a bit of a rollercoaster of emotions today with the situation changing multiple times throughout the day and having to adjust how I felt about things at each time things changed.

The day started with the plan of me to have a swallow test today and an endoscopy tomorrow, fasting today until after my swallow test . It then changed to swallow test and endoscopy tomorrow so I could have breakfast. One mouthful of baked beans and 1/2 coffee later my breakfast was ripped away from me and a new plan of fasting for swallow today and also endoscopy today. Are you lost yet? I know I am….and this was all before 8am!

Went through my day doing the normal hospital day of waiting for something to happen having some decent naps between episodes of severe pain.

Had a lovely visit from one of my work mates and was very spoilt with some beautiful flowers! I miss all their beautiful smiling faces!

My visit got interrupted by being wheeled off for my swallow test. For the record, the barium solution that you have to drink is all sorts of revolting and somewhat resembles revolting sambucca and that is one weird sensation standing on a bed then moves you to laying down. Like some kind of bad show ride.

When I got back to the ward the nurse informed me that she would check to see what time I was going into theatre. Instead of coming back with a time she came back with a sandwich to inform me that my endoscopy wasn’t happening today and I had to fast again from midnight for my endoscopy tomorrow. Sandwich is not the best option for someone who doesn’t and can’t eat bread and who hasn’t eaten in 18 hours, so just ate the filling.

One of my doctors came back about 15 minutes later and said the nurse had it wrong and that they can’t get me scheduled for an endoscopy until mid August as it falls into the criteria of elective not trauma/emergency. She then said they have spoken to Lilian and they have both have agreed to propose for my consideration that if my swallow test comes back clear tomorrow morning that I be discharged with pain medication to managed the constant pain and acute episode. And then I see Lilian as an outpatient in her clinic on Thursday this week and organise a endoscopy through my Bariatric clinic using the private system as I will get in a lot quicker

So now Jamie and I have to make a decision if we are comfortable for me to go home with this constant pain and hope I don’t have any really bad episodes that can’t be controlled by oral analgesia and pay to access the private system to see Lilian in a more time appropriate manner.

And to make matters worse they forgot to deliver my dinner! I was fasting at lunch time and nobody on the ward told the kitchen that my fasting had been lifted. They offered me another sandwich as a replacement. I said no sorry I can’t tolerate bread and heavy carbs so instead they offered me a salad plate with pasta salad and rice salad. Respectfully declined explaining I couldn’t actually eat that either. Two hours later I finally got a chicken salad plate and some Custard which is unfortunately sitting very heavy as the chicken was a bit dry. Better than no dinner at all I guess.

So all in all it’s been one hell of a rollercoaster ride today and i am feeling all sorts of different emotions and think I really need time to process everything. I am scared about going home without an answer and not being able to manage the pain with oral pain relief but I am also excited to be able to get out of here and get back into my own comfortable surroundings with my dear little family!

Big decisions to make tomorrow if and when I get the all clear from the swallow test!

This whole experience has been so emotional and testing to my journey but I have to try and stay positive motivated and focused that while the path I am on probably wasn’t the path I planned, I just need to “recalculate” like my GPS says to help me get back on track to head towards my goal that I WILL achieve.