A good night sleep
Sleep has always been important for Rory since his first diagnosis ten years ago. He sleeps a solid 10 hours every night. Sleep improves Rory’s performance during the day. It allows him to think better, exercise more and maintain an even-tempered mood. It is wonderful to see him back sleeping in his own bed. There are flannelette sheets, warm blankets and room to stretch. No one wakes him during the night. We know he is getting the rest to recover from treatment, which is especially important as he is neutropenic. His immune system will not be able to fight infection for the next week. The main symptom he is experiencing is extreme fatigue. Sam said he looks worn down and Sam is right. Rory is pale with dark rings around his eyes and he is moving very slowly.
Rory was discharged from 27B on Saturday. We had a bit of a fright at 3am as one of the caps came off an iv line. When he got up to pee fluid and blood started leaking on the floor. The nurse and I were scrambling in the dark. In the afternoon we pushed Rory through Auckland Domain to Newmarket so he could enjoy a Movenpick icecream. On Sunday morning Rory had a GCSF injection to help his immune system recover and we drove home.
It was nearly three weeks since Rory and I had been home. My head spins with the unpacking, putting the household in order, doing the jobs I need to get done while I am home (there are a lot of things you can’t do from Auckland), and managing Rory’s needs. As we progress through the journey it gets increasingly harder for me to work. It is hard to find the time and space in amongst everything else which needs to be done, and it is hard to switch off everything and focus on the job. As I earn less and less it is the wonderful generous things people do every day which helps keep us afloat. The staff at Inglewood High School are keeping our freezer stocked with delicious meals which saves on groceries and allows us time to do other things. Yesterday our neighbour Christine gave us some fresh fish and our other neighbours Marie and Tom brought over baking and a donation. Marie also gave us a donation from the Mothers Friendship Group she belongs to. This money will be used to help pay the bills. Thank you everyone for being there with us, it makes a significant difference in our lives.