Journey

I have the task of piecing our lives back together.  Sean has returned to work at TRC, albeit slowly, and Colt has slipped back into Year 5 at Inglewood Primary like he was never away.  Rory and I are bobbing about in the wake of our lives.  When you are fighting cancer you don’t realise how many things fall by the wayside until you have to pick them all up again.  It feels like I am simultaneously trying to tie a knot in the end of 100 threads.  Normally I am up for the challenge.  I am a high energy person, an early riser who is ready for action as soon as my feet hit the floor in the morning.  But for the past week I have been reluctant to get out of bed.  It feels like I have run out of power.  I have been pushing so hard for so long I appear to have temporarily run out of oomph.

I have decided to keep on writing Rory’s blog a couple of times a week as his journey is far from over.  I think it is important for people to understand when cancer patients go into remission life merely moves to a different level.  There are also lots of wonderful people who care about Rory and would like to continue to follow his journey.  As Rory is at the end of treatment I have updated the presentation on his website which summarises his journey with osteosarcoma.  It is impressive.

Even though Rory and I are bobbing about we have been getting things done.  We visited Rotokare Sanctuary to record a short film clip.  The Rotokare Scenic Reserve Trust and the Taranaki Kiwi Trust are developing a project to provide a kiwi experience, on an annual basis, for a small group of Taranaki children who face challenges.  Rory is the ambassador for this project and a short film clip of Rory’s experience with The Hulk was made for a funding application.  We attended the farewell for Basil Chamberlain, the CEO of Taranaki Regional Council.  It was important to thank Basil in person for the fantastic support TRC and our Managers have provided to Sean and I over the last 9.5 months.  Yesterday Rory and I visited Riding for the Disabled in New Plymouth.  Rory is keen to spend some time with the horses so I have enrolled him for Term 3.  I think it will be good therapy for him.  We attended an appointment at Taranaki Base Hospital with the new Physiotherapist Karla who is going to guide Rory on his recovery.  She said the number one priority is fatigue management.  Everything Rory does for the next few months will drain him of units of energy.  He must take breaks during the day to recharge his batteries or fatigue will slow his recovery.  He needs to take himself away from all stimulation for 10-15 minutes, such as in his bedroom where it can be made dark and quiet.  It is akin to meditation.  It makes sense in theory but I am not sure how I am going to convince him to do it.  The last place a teenage boy, who has been confined for the majority of the last 9.5 months, wants to be is in his bedroom having a nana nap.  This morning we met with Amanda from NZ Care Disability to discuss the recruitment of a new Companion for Rory one day per week.  He will replace Jack who joined the Police force.  Jack and Rory hung out on Wednesdays and did bloke stuff (no further explanation necessary).  Suitable male companions are hard to find and are invaluable for boys and young men with challenges. 

Thank you to Cashy and Erin for the supply of delicious honey from Autawa Apiaries, the best in Taranaki. Thank you also to Gabby's Starlit HOPE for the grocery vouchers.  Your ongoing support is appreciated.