Month: March 2015

How I miss a good nights sleep. Damn you steroids. 

I am limited to 1.2l of fluid a day. Boring. Something about lowish sodium level. 

I never used to like ice and water. Now I can’t get enough of it! Love the stuff. Can’t wait until fluid restrictions end. Might treat myself to a bucket of of ice and water. 

So what is it like in here day to day?

7am – breakfast arrives. A couple of wheatbix. A pile of pills. I usually sleep in due to lack of sleep and eat at 9am. 

9am – special snack trolley for ward c6. I get a sustagen 250ml for extra nutrition as the food is shite. I need the extra nutrition to keep my calories and protein intake up. 

10am – snooze after a bad night sleep. Shower when I wake up. 

Doctors come around sometime in the morning for a chat. 

12 – lunch. Usual slop. I have an up&go instead as the hospital food is inedible. Maybe two up&go. Some more meds. 

Afternoon- maybe get up or snooze again.  Bored by now. Started doing a programming course on iPhone programming now though. 

2pm – trolley again. Another sustagen. 

5pm – dinner. More hospital slop. More up&go drinks to replace the slop. More meds. 

7pm – trolley again. Another sustagen. 

Evening – watch a movie or old tv show on my MacBook. Or do nothing if I am in pain. 

10pm – bed.

After midnight is the worst as my stomach really acts up at night making sleep really hard. I usually have some pain relief a couple times at least each night during the last week. 

Observations are taken every 4 hours over 24 hours.  So at 8am, 12, 4pm, etc. Bloods are taken at 4am in the morning so that means I am woken at 4am if I like it or not.

Sleep deprivation is the worst in this place. Followed by boredom. 

Had my bone marrow biopsy today. All went OK. Had a nice chat to my regular nurses etc in the biopsy room as they were doing the biopsy. A jolly good wheeze.

They give me IV valium as the sedative and phenatnyl for pain relief.  Very relaxing. 

Now to see what the results are in a week. 

GVHD of my stomach still requires me to keep getting IV steroid. Sigh, another week. 

Had a shocking amount of pain last night but feeling quite good today. 

Back in hospital due to GVHD. Actually left too early as it turns out. They should have kept me in for another 7 days to get the GVHD under control rather then release me so soon.

Feel ok except for the GVHD in my gut. A bit painful at times.

I can go outside etc so i am not trapped in my room this time.

Hopefully resolves soon and I come out in better condition.