I sit again in another long, long meeting with the Marsden palliative team. Things have changed again - no longer either asleep or awake Rose is now in some kind of awful hinterland and nothing or no one seems able to reach her or help her. We have almost exhausted our options and my confidence falters - methadone, ketamine, morphine, fentanyl and a variety of sedatives are all running into her dozens of times a day but still she cries out in distress day and night. I feel faintly and bizarrely apologetic that she is not conforming, not responding to the drugs in the way she is expected to, that she has a vice-like grip on staying in the here and now and experiencing every awful second of it, that she's not drifting away with the drugs, letting go, giving up. At the same time I am filled with renewed awe and respect for her - it's her life and every second of it is appalling now but she's still here, still hanging on to it. So completely Rose.
So we 'go up' on things yet again - doses are doubled and trebled, the local pharmacist runs between the GP and his phone collecting new prescriptions, ordering controlled drugs in eye-widening quantities. I am running a crack den but my eight year old is unsedatable. It takes a bottle of liquid sedative to calm her down sufficiently to catheterise her but they bring three and we joke that if it doesn't work we will share out the bottles between ourselves while Rose, Little Britain style, gets out of bed and walks to the loo. There is a black humour in it all because I literally cannot cry all the time but there is also an unspoken 'what next' and I am aware that if I can't manage this on all the drugs I have the only other option may be a level of deep sedation as in days gone by when symptom control was not so sophisticated. Not that it feels very sophisticated just now. And with that rises the spectre of the hospice so I don't bring it up. Instead they talk again about support groups, about Felix, about Simon, about how we are all coping and managing and are we getting plenty of help etc etc. And I want to say, I've got the rest of my life to worry about how we're all coping and it won't be well but for now shall we just concentrate on getting her pain under control?
I know that I am obsessed with keeping Rose at home but her current levels of awareness and anxiety only compound this. As her needs become more personal I can't bear the thought of her being touched, nursed by anyone other than us - an earlier, bungled attempt at catheterising her this week which left Rose screaming and traumatised and me with my head spinning with rage reinforces this. She's staying here and with intervention from as few people as possible for as long as this takes. So at the end of another difficult week - how much more difficult, how many more weeks? - Simon decides to start working from home. I don't put up much of a fight. In fact I shred his suits and cut up his Oyster card before he changes his mind.