We had the meeting to plan for dealing with illness when he's well, when he's in decline and at the end.
There were so many people there they had to use a seminar room:
- Oncology consultant
- Palliative care consultant
- Paediatric consultant
- Social services
- Community nurse
- Clinical Nurse Specialist (oncology)
- Clinical Nurse Specialist (family support)
- Hospice outreach
- Home nursing agency
- The parents
Good of them all to give up so much time for a little boy. But so hard to endure. Having to go through his history yet again. Having to discuss symptoms that will show the tumour is progressing. Having to discuss what treatment it is and is not worth having at the end. Emotionally draining. And then back to work.
Someone said how brave we were for having the meeting. I get unreasonably annoyed at that type of statement. I don't feel brave nor do I think we are being brave. I feel we have no option and sometimes just a bit patronised.
Got home to an excited boy. The hospice had got him a signed photograph from Mr Tumble (children's TV character). He was thrilled, wanting to show the photo round the house. Made the emotion from the meeting that bit harder to handle.