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Love, Poetry and Revolution - Tuesday 25th March 2025

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After a long period of stasis, I have just completed the first step in changing our house and garden to meet the needs of us all.  The first step is converting our garden into a usable space for socialising and hosting gatherings (maybe with food if guests are lucky!) I'm on the verge of starting a project to convert our garage into a combined music room, library, and guest bedroom. It's long been a dream of mine to have a library and a music room, and this dream is now almost a reality.   You might ask why I didn't start this sooner? The overarching reason is that being E's carer, with all that entailed, it was almost impossible (for a long time) to muster the energy or positivity needed to make such big changes. Not only that, some of these changes would have been impossible whilst E was in her hospital bed. Getting to the point where I could even imagine there was a future for me was a very long process involving pain, upheaval, and a lot of counselling.  I need t...
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Love, Poetry and Revolution - Wednesday 5th March 2025

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Life has changed a lot since I last wrote here, but there's only one thing I can actually write about. About a month ago, E died after a long illness.  Although it had been expected for a long time, it still came as quite a shock.  There wasn't any warning, and the carers discovered her body in the morning. Although my three sons and I had been grieving for the loss of a mum and a wife for a long time, the finality of this was deeply upsetting. As one of my sons said, "I was just used to her being there all the time". Overall, it was a relief because E had suffered so much in the past few months. This was very unpleasant for her, obviously, but also very hard to watch and hear.  After E's death, there has been lots to do.  Last week, we had a wake/celebration of her life, which was attended by around 60 people from across her life, ranging from her childhood to friends she'd made amongst the mums who had children at school at the same time as our youngest. The...
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Love, Poetry and Revolution - Tuesday 21st January 2024

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Sometimes it's hard to know what is good and what is not.  Last night (technically very early this morning) we called out the out-of-hours nursing service to attend to E.  We've had to do this several times consecutively over the past week.   With any luck, this is a sign that things are changing, which would be in everyone's best interest, not least E's.  Either way, the positive thing is that we should be moving to a situation where E gets pain relief and calming medication via a continuous feed syringe driver.  There is no telling how long this could last, so we have to develop a plan B, for the sake of E, who would ideally have access to 24-hour nursing care and for the rest of us who find witnessing E in pain to be upsetting. (Stronger words are more appropriate, but those will do) The reality of the situation is unimaginable unless you are the one or ones experiencing it.  Things must change. On other occasions, it is easy to distinguish good and...
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Love, Poetry and Revolution - Wednesday 1st January 2025

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The old year stretches out behind me and the new one beckons me. I haven't made any resolutions as I believe that you should try to improve every day and learn from things you got wrong.  Doesn't always work that way, but trying is half the battle. What I want most this year is for E's suffering to end as soon as possible. We don't even know the full extent of it, only the part of the iceberg that's out of the water. Over the past few weeks, her decline has continued apace, such that we are now keeping one eye open for signs of sepsis.  Fingers crossed it happens sooner than later. This weekend I should be off to Amsterdam with Q and her daughter (who is returning to her home there) to celebrate Q's birthday, hot on the heels of Christmas. I had a neck, head and shoulder massage at the Sue Ryder hospice yesterday which set me up nicely for New Year's Eve.  I have three more sessions to go and I can try reflexology (which I might try) and reiki which sounds l...
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Love, Poetry and Revolution - Wednesday 18th December 2024

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This post is going to be dominated by music.  I have yet to post it on Substack or my music-only blog, for reasons that may become apparent.  I've been to the last concert I'll be attending this year, though I have at least two to look forward to next year - one with Q and one without. My three standout gigs were, The High Llamas, Nick Cave and The Bad Seeds and Michael Head and the Red Elastic Band. Nick Mason's Saucerful of Secrets were excellent too, but I mark them down a little because Nick's the only original member of the band the songs were first recorded by.  This is probably a bit snooty of me, given the gig was so good and they have almost made those songs their own.    I just can't help thinking of Syd, who they were also honouring. I'm going to see The High Llamas in 2025, so I'll save my thoughts until I've see them again. Nick Cave and the Bad Seeds. What an amazing performance.  One of the top five gigs I've ever attended and Nick is ...
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Love, Poetry and Revolution - Monday 25th November 2024

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As things progress for E, the level of stress we are all experiencing has increased. Stress tends to creep up on you unnoticed until it overwhelms you.   Often, it takes someone else to spot the signs of increasing stress. It's getting to the level where I need to take action for my own sanity. My sons are also stuck and struggling to move on with their lives, which is not something E would ever have wanted.  There are some changes which we've been resisting but which I now must consider. It's not ideal, but when E came out of the hospital some two years ago the prognosis was not good and it seemed that, for such a short time, it would be best for E to spend her remaining days at home.  Two years later the downside of that decision is painfully clear.  After the next palliative care visit, at which I'll discuss all the above, I will begin to set the wheels in motion to change things. It will probably take a while, and given how E has been lately, it may nev...
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Love, Poetry and Revolution - Thursday 14th November 2024

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For about a week, maybe more, I've had a cold.  It's one of those colds that refuses to go quickly. I have shared it widely, unintentionally, though of course, I may not be the source of all the colds, there are so many about. I'm not here to write about my cold, though. It's a lead-in to something more pernicious. Accompanying the cold, especially as it slowly fades, I've had a bad headache. Initially, I thought it was cold-related, but I've come to believe it's a physical manifestation of stress - a topic that opens a crate of cans of worms. The stress I'm experiencing is probably the result of several things I'm anxious about. I had considered listing the things I thought were at the root of it, and then deciding whether they belong in the category of things I can control or cannot control. Instead, I've decided to dig deeper and write about it in the hope that writing it down helps control it and maybe it helps more widely.  I've always b...
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Love, Poetry and Revolution - Wednesday 6th November 2024

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Not a great morning to wake up to. Unbelievable, yet true. Moving the subject several thousand miles East, all the news that's fit to print. I have a stinking cold (not COVID, I've checked) and am thus feeling rather factual, telegram-style, so this post may be short. E continues her slow decline, but at least we seem to have got her pain management under control, mostly, at least.  As one of her carers said, "...at times she's too strong for her own good." Hard as this is to see in black and white, her suffering needs to come to an end. There is no purpose or gain from its continuation. For anyone. Q and I spent an enjoyable week in Amsterdam, my first real visit to the city and country. It was great to spend time with family and friends.  We did a lot of walking, saw a lot of sights to remember and ate some wonderful food with delightful company. I would love to go again, there's so much we didn't see.  Just before heading to Amsterdam, I saw High Llamas...
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Love, Poetry and Revolution - Thursday 17th October 2024

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The longer things stay the same, the more it seems that's the way they'll stay. No longer? Ever since returning from hospital some three years ago, and her brush with death whilst there, E's illness has followed a familiar and consistent pattern. Brief intense periods of illness (infections, seizures, that sort of thing) followed by longer periods of slow, continuous decline. Latterly she's been experiencing other symptoms, most especially bouts of pain of unknown origin.  When she's been in pain, it's often been associated with mild seizures which pass in a minute or two, with help. E is in an end-of-life care period during which comfort is the priority, which can throw up unexpected challenges. Her pain medication has been increased, but she still experiences pain at times. It's a bit of a challenge. On the one hand, we don't want her to be in pain, on the other it's hard to know how long the pain will last and we don't want to rush in and give...
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Love, Poetry and Revolution - Friday 11th October 2024

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We've had a busy week in Liverpool, starting with a gig in Manchester and then in Liverpool.  Let's start in Manchester.  We went to the new Co-Op Live Arena to see Crowded House.  They are at one extreme of the spectrum of music I usually enjoy, but I was going there with an open mind.  Q is a fan, and the next night we are going to a gig by someone I like, who Q has never heard of.  Back to Co-Op Live. I've got to say I wasn't impressed with the place. It's billed as having 32 restaurants, using local produce. How many does it have? None. Not a single one.  The place is still not finished. As it has no restaurants, it also has no loos unless you go inside. Which you can't do until they open up for the gig.  Manchester City to the rescue.  There are some portakabin-style loos a five to ten-minute walk from the venue. Not exactly what you imagine a fancy new-built venue to be like.  Food.  Manchester City to the rescue again.  There...
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