Simon and I sit in a meeting with the Kings palliative care team, the Marsden outreach pain management team, community nurses, and our CNS at Kings and talk about the future. No one mentions the year 4 syllabus, state versus independent, whether or not she should have extra spelling lessons this term, which clubs to do and what options we were considering for secondary. She doesn't have that future any more. Instead they talk about a home visit to assess the house and decide which room to put Rose in. HER ROOM I scream in my head. They talk about hospital beds, commodes, slides to get her in and out of wheelchairs, locked medical 'toolboxes' which the community nurses will have codes to, the legal requirement that Rose is seen fortnightly by a doctor because we will have controlled drugs in the house in order to avoid a post mortem, the fact that Rose's details will be on the 999 system at all times and on and on. Oh my lovely girl, I think, I know you love the limelight but this time I really think you've overdone it.
I drift in and out of the conversation but it goes on - we are handed leaflets with phone numbers on, emergency pain team contacts, hospice newsletters with smiling dying children on the cover, a brochure called When Your Child's Cancer Cannot be Cured (which at no point surprisingly suggests putting a pillow over their face and handing yourself in at the local police station) and finally it draws to a close.
We get it. Rose is going to die.
