It's busy here - a revolving door of friends and family (good), an endlessly ringing telephone (less good) and an astonishing amount of healthcare professionals on the doorstep (a lot less good). The support is overwhelming and I am grateful and humbled by it - the sad irony of how different it was during Rose's original treatment and how desperately we needed the sort of back-up I have now is not lost on me. I have lists of mobile phone numbers, emergency contact numbers, emergency procedures and familiar voices on the telephone every day - I would have gnawed off my own arm for that two and a half years ago.
Palliative paediatric care is faultless in its thoroughness but right now all it boils down to is exhaustively and exhaustingly updating an endless round of people on the day's symptoms and how I'm managing them. And I'm managing them just fine - Rose is transformed from the little girl who slept or screamed her way through three weeks in Kings. She is up and dressed most days, plays for short periods of time, is enjoying stories and DVDs, back-to-back episodes of Charlie & Lola, re-runs of Anne of Green Gables, being with the boys and her dogs, being at home, being with me. Radiotherapy and pain management has brought her back to us when I thought she would be for ever more in a morphine coma and I need to guard this time with her more closely - the second I am out of my depth they will all be the first to know.
I try to pick my way through the visits from hospices and see what help they may be to us. I'm not convinced just now but maybe later on when things change again and I have desensitised myself to the word hospice it will be different. A woman from Shooting Stars visits - she is a qualified nurse and would administer drugs. My ears prick up. We are eligible for her to come fortnightly for two hours so I can leave the house but Rose stiffens beside me and whispers 'but why do you need to leave the house, mummy?' I realise that I really, really don't need to or even especially want to. Demelza House come out - back in the day when my life was safe I have blithely fundraised to build this hospice. Let's hope they did a good job. They tell me that Rose's case has been to panel and she has passed the assessment. Good grief, I wonder, under what criteria may she have failed? They talk about respite care, daycare, the whole family going for the weekend, the new minibus, the trips to the circus, the sensory room, the water beds and how utterly fabulous the place is. Then they start to talk about end of life care and the familiar feeling that I get of reading a script in a rather black play descends on me. I know it's just psychological survival but it dawns on me how far off taking all this very seriously I still am.
