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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
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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
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Letting the light in.

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  My heart, which is so full to overflowing, has often been solaced and refreshed by music when sick and weary. - Martin Luther -             Celebrating my daughters Race for Life-a jewel to treasure this week!  I read this quote this week and it made me pause. There is no doubt that music has been an important part of my life. I’m a singer songwriter fan and also very much enjoy those whose voices are the instrument too, not necessarily together as that can be a hard ask! I notice, however, when I’m most stressed and anxious because of life and it’s travails I can’t listen in the same way. Somehow I takes up too much room in my head. Perhaps my brain is too overwhelmed by making sense of things or just getting through each day.  At other times it’s been reading, my usual solace, that has left me. I have found I can’t concentrate or as soon as I dip my eyes I’m asleep but not now thankfully. I’m enjoying every form of reading but I need to be selective. I don’t do sad just now, nor da
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Find the jewels

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  Find the jewels  Find the jewels she said Sometimes they are buried  I thought. And I’ve little energy for hunting.  At times I find myself  storing hurts instead. A missed opportunity,  a song unheard. Too many moments lost in what’s not happened  trying not to long for what has passed.  But the jewels are there  often in full view. A new bird finding the feeder.  The dogs joy at our homecoming. And for this afternoon The gentle snore of the cat permeating the quiet afternoon  light, creating a soothing rhythm.
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It’s a cat and dogs life….

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  A week off chemotherapy helped me have space to fit in a short trip to family in the south Highlands of Scotland. As soon as you arrive the freshness of the air starts to soothe. It’s so valuable to switch off from the tyranny of blood tests, treatment, assessment, endless medication and so on.  For a few days it was beautiful scenery and beautiful people. The pain was-is-still breaking through but less so. I can feel and see the concern on others when I struggle but I can no longer protect them from my worst times as they are too evident. My drugs get increased again and slowly I’ve improved a little. The steroid injection has started to kick in too. My body is less guarded and I’m relaxing a little more. So I’m sleeping-a lot!  The other day after a busy morning on a webinar I spoke at, I snuck upstairs to change into a soft denim look jumpsuit ( like a posh onesie tbh). Getting changed is always a challenge so I rewarded myself with a wee lie down. Several hours later I awakened w
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When people don’t understand the impact of pain-it hurts.

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                                                                     The Mood Moose  Who knew how good a pain killer Naproxen is? Take note but protect your stomach! I’ve been on it since the start of the spinal growth caused me pain. It helped. So much so it was a while, until I started to lose power and mobility I realised I might need more help. Since then my cocktail of drugs has changed and varied but naproxen maintained. When I was told to stop it as I started chemotherapy ( I didn’t know till the day before) I thought ok some tweaks of other things and I might me ok? I talked to a GP, we made a plan. The steroid holiday got me through the first day and a bit, by Sunday I was whimpering in pain by the evening, during the night and first thing in the morning. Monday morning came I contacted the GP. We topped up pregabalin and I asked re topical gels. Ask oncology- they told me to ask GP-. I asked the pharmacist-they told me to ask oncology. Wednesday I asked oncology, explaining m
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I love spring….

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  I love spring.   The hopefulness, the renewal of life, the colours, the surge of energy that even we humans can feel, leads to a sense of optimism. To be honest I’m in need of optimism when it seems my spring and summer is likely to be consumed by further treatment for breast cancer, while adjusting to new drugs for rheumatoid arthritis. A powerful cocktail but not the kind you would order for fun. There’s no jaunty umbrella, frozen fruit or champagne in this one. I’m trying to arrange things to look forward to but it’s hard to know what might be possible and when.  So to cheer myself up I ordered a copy of the book Preventable by Devi Shridhar. I know how to have a good time! It is fascinating and well written    and captures the reader and in my defence I’ve long had an interest in public health. What is so interesting is how much a recent event like this has changed our lives and relationships too. It seems like another time we sat in lockdown, uncertain and fearful and yet even
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