Rory Gardiner's Webpage

07, Sep, 2009

Monday 7th September 2009


Sean and I have been reassessing how we manage our lives now we are in the grips of chemo.  It has been almost six months since Rory was diagnosed.  After the initial shock, urgency and totally consuming two months of surgery, we made a decision not to give in to the cancer and maintain as 'normal' a life as we could.  We have met many families who packed up their lives and moved to RM House because one of their children faced a life threatening illness.  We thought we wouldn't have to do this, plus we still had jobs, a house on the market, and Sam at school.  Over the past four months Sean and I have worked as a tag team.  I have taken the long hauls, because I am Rory's mother.  Sean has relieved me or backed me up when it was needed.  It has been hard and we have drawn deep to allow it to continue.  But chemotherapy is a beast all of its own. 

During each chemotherapy cycle Rory is likely to be unwell for up to 3 weeks, and we need to be alert and able to respond quickly to anything which arises i.e. temperature, bruising, bleeding nose, vomiting.  Caring for Rory on a day to day basis is now complicated and time consuming.  He can only be washed carefully in the bath as he has three areas/ports which can't get wet (Hickman line, ng tube, Insuflon).  He needs to have a variety of medication at regular intervals some of which is refrigerated.  Even though he doesn't eat he has to be connected to the feeding pump for upwards of 14 hours per day.  The whole set-up has to be assembled from scratch and tested prior to each feed as everything is discarded after being used once.  Rory needs daily physiotherapy when he is up to it, we are trying to implement Ian Hunter's rehabilitation programme, and keep up with the basics of Rory's education.  Leaving the hospital grounds is like an army exercise.  We have to taken plenty of gear, be mindful about where bathrooms are, restrict the activity to what Rory can cope with (he now only walks around RM House as he is so fatigued), and stay within 50km of Starship.  We are paranoid about hygiene/cleanliness.  We try to avoid places crowded with people, and Rory touching things i.e. buttons on lifts, rails, door knobs. 

Sean and I also made a conscious choice to cope largely alone, and shield our families as best as we could.  When the going gets tough it just isn't possible to let in anyone else, and when the pressure eases we are conscious of every one elses responsibilities and busy lives.  Our families, and our close friends, have helped out in a myriad of other ways, and we particularly appreciate the care they have provided for Sam.  Sean has managed to keep functioning albeit on a reduced level, but for me being a slave to cancer is starting to take its toll.  Almost everything bar Rory has slipped off my radar; birding, running, tramping, and my job.  Some days I wake up and wonder where I have gone.  The lack of sleep, lack of a break, lack of immediate support, and absences from Sam are taking their toll.  It is now at the point where it is too hard to go solo for more than a few days at a time.  Something as simple as getting Rory and sufficient gear to the hospital for overnight stays in an emergency is a mission even though Starship is only five minutes up the hill.  And we still have two and a half cycles to go.  At the end of the month, by the end of cycle 2, we will be homeless.  We plan to put most of our stuff into storage, and split our time between Grannie and Grandad Gardiners and RM House.  We have decided we will all move to RM House, and head north when things are stable and Sean or I are able to work for a couple of days, or when Rory is having a break from treatment.  Sam will attend school at RM House.  It isn't going to be easy but I think it will be good for all of us to regroup and support each other during the tough final two months. 

Rory had another unsettled night, up and down to the bathroom.  Fortunately the vomiting has stopped.  He is now refusing to put anything in his mouth, food, fluids or medication.  I think it makes him feel as though he's going to be sick.  This now makes dehydration an issue.  He had his GCSF injection early this morning and then we headed up to Starship.  He had a finger prick blood test and we caught up with Rachel to tentatively arrange some physio sessions for later in the week.  We saw Nurse Nicola at Oncology clinic, and one of the Doctors.  Rory's blood results show he is already neutropenic (unable to fight infection) and his platelets are low (30).  It is likely he will need a platelet transfusion on Wednesday.  His weight has dropped to 23kg but he doesn't have a temperature.  The Doctor gave me a prescription for Paedialyte a fluid/electrolyte replacement which I am giving him down the ng tube as often as I can, and as much as he will tolerate.  He is not a big fan of anything being put down his ng tube.  He will tolerate the slow trickle of the milkshake but he can feel anything quicker inside his nose and it makes him distressed.  I managed to get 110mls into him in four tries this afternoon.  We remain at RM House by the skin of our teeth.  I 'caught' a poo sample , I won't go into detail about how this was achieved, and it was sent to the lab to test for viruses and bacteria.  If the diahorea continues tomorrow the Doctors will reassess what to do.  Rory had his Hickman line dressing and plugs changed while we were at clinic.  Two wonderful parcels also arrived for us while we were at clinic, one from Mrs Wily, and the other from the Koller-Cunningham household (Simon, Jane, Eila and Willow).  Rory was the centre of attention on the ward while he opened his parcels which were the subject of much speculation.  Thank you everyone for sending them.  He was thrilled. 

Sean left for Waihue late morning, and eventually Rory and I got back to RM House.  He was complaining of a sore tummy and feeling unwell so ended up back on the loo.  He fell asleep exhausted on the bed afterwards.  When he woke up I took him out into the Domain for some sunlight and fresh air.  He loves feeding the rock pigeons.  I know they aren't native, and likely a pest, but their cooing is very soothing.  They aren't afraid to get into your personal space, and allow themselves to be touched.  Their bodies are soft and warm and smooth.  Rory perked up a bit, even throwing Morton Bay Fig bombs onto the road to be run over by passing cars, so we managed to get a little homework done when we got back to RM House.  I had the window to our room open and it was sunny and warm.  When he tired of the homework Rory did some drawing.  He has a container of brightly coloured felts and jovis and will sit for ages designing and colouring.  Several members of the family have been the recipients of his lovely art work.  He definitely doesn't get it from me!