I may not believe in God or science or medical progress or in very much at all just now but I believe in the NHS. And I haven't always said that in the last few years. More specifically I believe in the palliative care team at the Marsden. As day follows relentless day and Rose's symptoms multiply I am skilfully led by them further down a path which without them would be unthinkable. In person for the big stuff - more drugs for intolerable scenarios still to come, teaching, guidance, advice, support - and on the phone 24 hours a day for emergencies. Familiar faces, familiar voices, calm solutions. Nothing and no one can help me now or change what's happening, what's still to come for Rose, what's to come later for all of us and even they can't do what they would surely love to do and wave it all away but what they can do is walk side by side with me through it all and every day find ways to make her suffering less.
Increasing pain, increasing nausea, increasing disease - daily changes almost imperceptible to us are slowly eroding Rose. There is more time spent asleep and less energy to enjoy the time awake - the effort involved in setting up a game or playing with her toys leads to tears of frustration as crushing fatigue, nausea or pain stops her in her tracks. Our afternoon routine of lighting the fire, making hot chocolate and watching Dr Who ends more frequently with me realising I am watching alone, closing the laptop and tiptoeing away. Used to filling the room with her personality she still rallies for friends and family - and nothing is guaranteed to revive her more than Felix, her very own Charlie. Charlie and Lola. Lola and Charlie. Felix and Rose. Rose and Felix. Charlie without Lola. Unthinkable.
But still my desperation and selfishness is such that I would settle for this. A Rose who can only totter a few steps, is in pain most of the time, feels sick and ill all the time, has disease in every limb, in her chest and in her brain is still a Rose to me, to Simon, to Felix. While there is life and breath in her I am staving off the devastation to come and so, a non-believer, a pessimist and a cynic, I pray every day for more days and weeks like these to come.
