Journey

Sometimes the words just don’t flow.  It is happening to me today.  I think there have been too many disjointed happenings, emotions and thoughts this fortnight without the time to weave them into something whole. 

Rory had a chest and back x-ray to try and find the cause of his back pain.  Thankfully his chest is clear of cancer.  It is the area we are monitoring for re-occurrence of osteosarcoma.  His back x-ray show mild spondylotic changes in his spine at all disc levels.  This is usually seen in older people as age related wear and tear.  Damage from radiotherapy means Rory has the back of an old person.  It is unlikely there is anything which can be done.  We are waiting to hear from the specialist.  Thankfully his back pain has eased.  The shift into a powerchair for mobility outside our home may slow any degeneration and put less pressure on his bones.  Blood tests showed Rory also had a low phosphate level.  Another symptom of goodness knows what!  We conducted another power chair trial with Physio Coralie.  The Whill Model C2 powerchair  https://whill.inc/us/whill-power-chairs/ was lightweight, compact and stylish.  It has a 360 degree turning circle.  It is the best we have trialled for indoors and about town.  We are excited about potentially finding something suitable to make it easier for Rory to be independent for a chunk of his day without the struggle.  It frightens everyone when he teeters on the edge of a fall. 

Sean (as support), Rory and Colt were treated to a wonderful experience last weekend.  They attended Canfish, Canteen’s major event of the year.  They flew to Auckland and spent Saturday fishing on boats from Maraetai Beach Boat Club on the Hauraki Gulf.  They were joined in part by the Coastguard and the Police Martime Unit.  At the end of the day back on shore they were treated to special sponsored prizes, and a ride in the old American school bus being used in the Minecraft movie being filmed in New Zealand.  They were buzzing when I picked them up at New Plymouth airport on Sunday morning.  Thank you to Canteen, all the volunteers and sponsors. 

It was a strange and wonderful experience for me, 40 hours to myself.  It is unprecedented.  It passed by in the blink of an eye.  The silence and stillness was so out of character for our home and my life it almost felt like a black hole.  I could hear the echo.  When I wasn’t partner, mother or manager I had the space and time to ask myself who am I.  I packed plenty of my favourite things into 40 hours and discovered I am still a woman, a tramper, an environmental warrior, a treasure hunter and a daughter. 

On Taranaki Anniversary Monday support from Carer Shelley enabled Sean, Colt and his friend Arana, and I to slip away tramping in North Taranaki.  It was a tramp we have done before which involves caving.  It is always a wet, muddy fun experience, especially sidling on our bums through the final chute and squeezing out through the exit hole.  The glow worms on the cave roof and walls are sensational. 

This week we have kept a closer eye on Sam.  He had surgery to repair the torn ACL in his left knee from a football injury.  It has upset us all to see him receiving medical treatment.  It brings back memories for what we have experienced with Rory.  We have been checking on Sam every day and he is being well care for by Caitlyn.  It will take time for him to recover.