Journey

Loves starts as a feeling, but to continue is a choice. 

This fortnight Sean and I celebrated our 25 year anniversary.  We have never married but instead have had the free will to choose every day to be together.  To achieve this for quarter of a century was a special reason to celebrate.  It was wonderful to be able to slip away for 33 hours together, even though it required more than a reasonable amount of planning.  Rory spent the Sunday with Support Carer Shelley and then someone from Geneva Health Care came into our home to look after him overnight.  On Monday morning Rory resumed his normal routine, heading with Driving Miss Daisy to NP Men’s Shed.  Colt was cared for by Sam and Caitlyn on Sunday and hung out with his friend Matthew on Monday.  Sean and I drove to Raglan, a place we have always wanted to visit.  We stayed at the Tiny House Love Bus https://tinyhouseescapes.co.nz/raglan-lovebus/ with no mains power or cell phone reception so were disconnected for 15 hours.  I had a brief period of anxiety in the evening but I had put every possible contingency measure in place if something went wrong.  So I took a few deep breaths and let it go as there was little we could do about it.  During our time together Sean and I enjoyed delicious food, checked out several artist galleries ahead of their annual arts trail, picked out my birthday present at Souls Shoes and walked several tracks; Te Toto Gorge lookout, part of Mt Karioi track and Bridal Veil Falls.  Next year we are going to aim for a weekend away for our anniversary. 

I have been reviewing Rory’s tests results from the hospital stay and his discharge papers from Starship Hospital (including Late effects passport).  The test results need follow up and the discharge papers are incomplete and need amending.  The runny nose and cough have returned.  Rory has had a couple of falls, spraining his left ankle.  Physio Josh has visited twice.  Rory had a clinic appointment with endocrinologist Dr Sharma and audiologist Aretha (SCIP) to check his cochlear implants.  He has also seen Psychologist Daniel.  Yesterday Rory and I spent the morning at the fourth session of the Kia Roha Good Life programme.  It has been making me think about Rory’s future – what does success look like for him in the next 5 years.  This is quite challenging as we have lived day by day and week by week since cancer entered his life.  It is the only way to not feel overwhelmed, especially when life is disrupted at random by the next thing.  However, I think to steer Rory’s ship in the right direction we need to at least try and chart the course.