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Showing posts from July, 2022

For the carers

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  Caring for each other I’ve taken a big step this month and I’ve got help from carers, especially to let Andrew get out without worrying. I’ve found it hard. It’s an acceptance of my situation, a dependence on others, accepting strangers in to your home and that’s just the start. There’s an emotional toll I hadn’t anticipated; a rollercoaster of trust and testing patience for me at least.  I’ve decided to have direct payments but chosen to do it through an agency so I’m not acting as an employer. I didn’t quite anticipate the scale of the task if I’m honest, I was drawn to having control over what support I want.  But these times of shortage of carers that frankly is an illusion. I started out hopeful but soon learned the complexity of my needs were a stumbling point, they really want a daily/weekly commitment that fits with a business model.That’s at odds with a person-centred model and reflects that profits drive      decisions in so many of the agencies.  It took several dry runs t

Summer days, drifting away

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  Summer days drifting away  When I did grief counselling it was striking that the bereaved often found summer worse than winter, when adapting to losing their loved one. Winter allows us to coorie in at home, the rest of the world closed off from our experience. But summer rubs your nose in the pain. Postcards from another world, of families, intact and making memories. The grieving sit alone, an acute longing separating them from how summer used to be.  I recognise that feeling as my summer moves slowly. Bereft of holidays or breaks from the relentless slog of chemotherapy. On top of my chronic pain and disability, life feels like pretty hard work with little return.  And yet I know it could be so much worse, as my treatment plan left out taxotere from the typical regime. With my existing conditions it was thought to risk tipping me over. I worried it would knock me down and I literally wouldn’t be able to get up again. So I’m not as sick as I might have been and I have my hair so fa