Had a surprise email from an ex colleague, Cathy, whom I worked with as part of the Kent Behaviour Support Service (or as the newspaper once appallingly malquoted..the Kent County Council BAD Behaviour Support Service). She is now co-editor of a magazine called ‘Play for Life’ which is for those who work with children who have emotional and behavioural difficulties. She sent me a copy of a review of my book Fifty/50 and asked if she could publish it. I read the review and was quite bowled over by it. Looks as though the book does have a wider appeal than just friends and family.
Annie, the Macmillan nurse called round yesterday afternoon as planned. She was extremely helpful with practical aspects of the illness and will guide us through the procedure for Disability Living Allowance which we are entitled to because of the prognosis and the unpredictability of the disease. She said that the team will offer support as it becomes necessary, and if there is a deterioration in my condition they will try to maintain my wish to remain at home, though will give advice if they feel that is no longer practical.
It was weird listening to all this. It felt like she was talking about a stranger and not me at all. Hard to accept that kind of decline in my health, even though realistically I will have to confront it one day. Nonetheless for someone who has been fit and healthy for years I found it very difficult to listen to. It didn’t make me tearful or anything, just mildly detatched.
She did feel that I could gain considerable relief from the swelling in my abdomen, and the hospice consultant will be able to offer advice as to when it would be appropriate to drain off the fluid. Though it will most certainly come back, diuretic pills might slow the process and I could be lucky and have several weeks without all that internal pressure build up.
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