Discombobulated

A great word I learnt from my friend Marion.

And that's where I am, it sort of means confused, disconcerted, upset.

So the great news is we are home from Oxford - eventually released around 3pm yesterday after the usual long wait for drugs.   Then the  familiar peaceful drive back to Bristol and the overwhelming sense of relief as we enter the house.   But then discombobulation sets in - the transition of leaving hospital life and settling back into home life.  It doesn't take long - but its very peculiar and unsettling.    Ella has her coping strategies and  I have mine.   Ella is by now very good at it, having  had to do it so many times and has it off to a fine art - it always involves a cup of tea amongst other things.  

However, this time the discombobulation is greater - as Ella transitions from her year long treatment plan and regime into the next stage.   Its exciting but scary at the same time. Whilst there are some clear markers (ongoing weekly Mepact infusions, review meeting in Oxford on 20 August etc), there are lots of unknowns and don't knows.

Have confidence Jo - the don't knows will become clear, the unknowns will reveal themselves when the time is right and the journey will continue and we will all more than cope and of course we are all
GETTING BETTER.