Journey

Life continues to happen and move on for our family.  It contains a hole left by Poppa who has been taken away from us.  Even in my grief I know Nana is feeling it most of all and in a way I can’t comprehend.  Guy and I are supporting her to pick up the pieces and put them back together.  Sam, Caitlyn, Rory and Colt are all helping.

Poppa’s passing has been a sharp reminder for Sean and I to ensure our affairs in order.  There are puzzles you don’t anticipate at a very emotional time.  Our wills are the most pressing.  They are 20 years old so pre-date Rory’s two cancer diagnoses and the birth of Colt.  The main issue is how to provide care for Rory for the rest of his natural life.  Sam and Colt will become his guardians but Is it too much to ask for one of his brothers to provide him with a home?  Although funding is available for support carers it is for less than half a day.  ‘Natural’ support is required from his family; at nights, in the weekends, when there are medical appointments or he is unwell and during holidays.  We plan to update our wills and review them in five years, so we are talking with Sam and Caitlyn.  It is a heart breaking challenge. 

Rory continued with his weekly programme of activities with a couple of medical appointments.  He had attended a clinic with an Orthopaedic surgeon at the Hospital.  Radiation has caused mild arthritic changes in the spine, mild scoliosis and low end bone density.  He is having intermittent back pain which could be related to his bone condition or could be muscular.  He will have an MRI scan to check.  The doctor said he has to keep moving/exercising as much as he can for as long as he can.  Activities like massage and yoga will help reduce tightness and promote flexibility.  He received his 3-monthly testosterone injection from Nurse Cheryl.  A blood test just prior showed he had a high potassium level which gave us all a fright.  This can be caused by poor functioning of his kidneys and can affect your heart.  Thankfully a repeat blood test showed it had reduced. 

The WHILL C2 powerchair https://alliedmedical.co.nz/products/technician-resource-bank-whill-model-c2 has arrived for Rory to trial which is exciting.  This will be used indoors and out and about in town.  We hope this will make Rory’s life easier as it has become a struggling for him to mobilise with the walker/rollator.