Rick Beato sits back and lets Rick Wakeman talk. And for an hour and a half that's what Rick Wakeman does. It's an absolutely mesmerizing interview. I hope you enjoy it as much as I did.
In 1974 a new friend invited me to his home and played me his music. One of the pieces of music he played was Journey to the Centre of the Earth by Rick Wakeman.
Here's the interview.
I’ve decided to reintroduce the 100-word project.
My life has become quite flat and empty since the kidney cancer and the medical
complications associated with it happened in 2022. They were life
changing complications that we continue to face every day. They resulted in the
amputation of my one surviving knee. And
that changed everything. I no longer walk. I am a permanent wheelchair user. It’s
a difficult truth to come to terms with. I struggle with it daily. One
consequence of the amputation is my inability to read or write anything. That’s
why I’ve restarted this project.
by John Harris
Click here to read this article at The Guardian website
John Harris
The spiritual aridity of modern life can be tough to handle. Maybe that’s why the singer, and his new album Wild God, have struck a chord
There is a tension in 21st-century life that may come close to defining how millions of us now live. Whenever we want to commune with other people, we need only reach for an object the size of a Twix and there they all are: scores of acquaintances and a veritable galaxy of complete strangers, offering insights and opinions on a huge range of subjects. But our online lives too often revolve around a mixture of anger, silliness and superficiality.
Where do we go and who can we find to meaningfully share our thoughts about life’s inescapable fundamentals: love, loss, death, fear, bereavement, regret? To properly do so might require real-world company, which can be an equally big ask. Think about all this, and you will sooner or later collide with something that predates the internet: the long and steady secularisation of life in the west and the vast social holes it has left. Once, for all their in-built hypocrisies – and worse – churches at least offered somewhere to ritualistically consider all of life’s most elemental aspects. Now, beyond communities with high levels of Christian observance, they are largely either empty or woefully underattended.
Which brings me to the singer-songwriter Nick Cave, who has just released a new album, Wild God. In November, he will be playing to huge audiences in a run of British arenas: a relatively new experience for him and his collaborators, which reflects deep changes in his life and his music. In 2015, he suffered the loss of his 15-year-old son Arthur; seven years later, another son, Jethro, died. And in the midst of an unimaginable level of grief, Cave has not only poured his thoughts and feelings into his art, but repeatedly spoken about the profound personal changes caused by outwardly senseless bereavement, as well as reflecting deeply on other people’s experiences. As a result, his audience has ballooned: as he turns 67, he is probably at the all-time pinnacle of his success.
Wild God is a fantastically moving, life-affirming record. But there is even more to Cave’s bond with his public than music and lyrics. Since 2018, he has overseen the Red Hand Files website, where he answers inquiries on a huge range of subjects. As he puts it, the original idea has grown into “a strange exercise in communal vulnerability and transparency”, which entails reading “100 letters a day”. Because he is a kaleidoscopic, complex figure, some of his replies highlight views that are not to some people’s tastes, as evidenced by his hostility to cultural boycotts of Israel, or his antipathy to so-called cancel culture. Last year, he explained why he attended the coronation of King Charles (“I’m just drawn to that kind of thing – the bizarre, the uncanny, the stupefyingly spectacular, the awe-inspiring”). Most of what he posts combines his curious, questioning instincts with a deep humanity: recent editions have covered loneliness, parenthood and suicide. When he plays live, all of this is in the air: it seems to give everything even more meaning.
The same is true of Faith, Hope and Carnage, the bestseller published in 2022 and made up of dialogues with the Observer writer Sean O’Hagan. It looks ahead to Cave’s tentative return to the Anglicanism he was brought up with, and – among many other subjects – is full of insights about what happens when life fills up with grief and hurt. One of his key beliefs is that when we experience loss, we become more human: these things are universal, and therein lies the key to surviving them. “This will happen to everybody at some point – a deconstruction of the known self,” he says. “It may not necessarily be a death, but there will be some kind of devastation.”
He goes on: “But in time they put themselves together piece by piece … and the thing is, when they do that, they often find that they are a different person, a changed, more complete, more realised, more clearly drawn person.” The book is full of passages like that. I don’t think I have ever read anything like it, which is a tribute to Cave and O’Hagan’s achievement – but also an illustration of what is missing from most of our culture.
Some of us seem to be belatedly trying to fill the gap. I see that impulse in people’s renewed yearning for nature, the ritualistic pleasures of summer festivals, and the popularity of meditation and mindfulness. It is telling that the militant atheism that peaked 20 years ago with the publication of such books as Richard Dawkins’s The God Delusion and Christopher Hitchens’s God Is Not Great now seems passé.
No one should ignore darker developments that run alongside all this – not least the culture warriors whose interest in a Christian revival is part of their loathing of Islam. But there is a very different story about other people’s quiet quests for meaning and transcendence, and the enduring presence in our culture of essentially Christian thinking. The historian Tom Holland – who, like Cave, has returned to the Christianity he was brought up with – says that in the way millions of us interpret world events there is something unspoken: the fact that “at the heart of western culture is the image of someone being tortured to death by the greatest empire on the face of the Earth”. Many modern rituals and gatherings, he says, look like a “tepid echo” of old church festivities. And he likes Cave’s characterisation of God as wild: “Unless you feel a sense of awe and incomprehension, what’s the point? It can’t be a God who’s just nice.”
I am a devout agnostic. But as I get older, there are experiences and aspects of living that often open the way to a sense of the ineffable and mystical, and the need for something that may help me make sense of an increasingly chaotic world, and life’s ruptures and crises that seem to arrive with alarming regularity.
Most Sundays, I go walking with my two kids, which is a reliable emotional pick-me-up. More often than not, we stray into one of the village churches that tend to pepper our routes. It happened again last week, when we spent 15 silent minutes in a disused chapel near the Somerset village of Holcombe, and I thought about an entry in the Red Hand Files that Cave posted in response to a fan’s bafflement that he has found at least some solace in Christianity.
“To my considerable surprise, I have found some of my truths in that wholly fallible, often disappointing, deeply weird and thoroughly human institution of the Church,” he wrote. “At times, this is as bewildering to me as it may be to you.” Here, I think, lies the faint outline of a journey that more people may sooner or later take, and something I can just about imagine: slowly increasing numbers of people being pulled away from their screens, towards something much more human and nourishing. Those pews, in other words, may not stay vacant for ever.
John Harris is a Guardian columnist
From the Guardian Saturday 2 March 2024
Click here to read this article at the Guardian website
A new book of lyrics by Kazuo Ishiguro joins collections by Kate Bush and Jarvis Cocker. But can songwriting ever work on the page?
Dorian Lynskey
Sat 2 Mar 2024
Long before he wrote Booker-winning novels and Oscar-nominated screenplays, the Nobel laureate Kazuo Ishiguro wrote bad songs. In his own words, these unheard lyrics were “mostly ghastly” but they enabled him to find his voice. He worked through the gauche and the pretentious before alighting on the simpler first-person style that would define his fiction: “understated, almost mundane lyrics, with emotions placed between the lines, only occasionally pushing to the surface”.
In 2002, Ishiguro chose a track by the American jazz singer Stacey Kent on Desert Island Discs and a friendship developed. Kent’s husband and collaborator Jim Tomlinson suggested to Ishiguro that he try writing her some lyrics – his first in 30 years. These were much better. Now, Faber has collected 16 of them (five as yet unrecorded) in The Summer We Crossed Europe in the Rain: Lyrics for Stacey Kent, with elegant illustrations by Bianca Bagnarelli.
Ishiguro’s lane-changing is not unique. There are songwriters who write novels (Nick Cave, John Darnielle), novelists who have written lyrics for musicians (Michael Chabon, Polly Samson), songwriters who publish poetry (PJ Harvey), and poets who release albums (Kae Tempest). But whether lyrics are themselves a form of literature is still an open question. While they can certainly be literary, a lyric is just one channel for conveying meaning in a song. The vocal delivery, melody, rhythm, arrangement and production are all used to enhance, or sometimes subvert, what the words are saying.
Take the two available versions of Bruce Springsteen’s Born in the USA. In the 1982 acoustic demo, the Vietnam veteran’s complaint is a bitter howl of rage. In the 1984 studio version, it sounds perversely anthemic, with the result that some patriotic listeners missed the message altogether. Or consider Nick Cave’s 1988 song The Mercy Seat, a more effective bit of storytelling than either of his novels. To Cave, the indignant death row convict was clearly guilty but Johnny Cash later covered it on the assumption that he was in fact innocent. Same words, different impact.
Performance, then, is one obvious distinction between lyrics and literature. The sensory experience of hip-hop narratives such as Ghostface Killah’s gangland nail-biter Maxine or Eminem’s parasocial tragedy Stan is so fundamental that they call to mind not literature but cinema. Yet there is no argument about considering plays as literature to be read, even though they are designed to be brought to life with actors and stagecraft.
"Lines that seem crass, pretentious or entirely incomprehensible written down can thrill a stadium."
Perhaps the real difference is that a song lyric has neither the narrative responsibilities of drama or prose, nor poetry’s duty to precision. Lines that seem crass, pretentious or entirely incomprehensible written down can thrill a stadium. Even songs with more literary flair can comfortably withhold meaning, merely gesturing at a larger story that the writer may or may not have thought through. After Bobbie Gentry’s tantalisingly enigmatic 1967 hit Ode to Billie Joe sparked a frenzy of speculation about what Billie Joe McAllister threw off the Tallahatchie Bridge, Gentry admitted that she did not know herself. Ishiguro argues that this “unresolved, incomplete quality” is what makes a song haunt the mind.
As well as being Ishiguro’s publisher, Faber has a track record of publishing handsome little volumes of lyrics by Kate Bush, Jarvis Cocker, Lou Reed, and Neil Tennant of the Pet Shop Boys. Traditionally confined to record sleeves, songbooks, websites and old issues of Smash Hits, lyrics acquire a patina of prestige between hard covers. Bush wrote that all the lyrics had “been reviewed as works of verse without their music”.
Still, imagine reading one of Faber’s collections without ever having heard the songs. You would not be able to conjure Cocker’s sly, fruity delivery of the words, “I said, well, I’ll see what I can do” in Pulp’s Common People, nor the leaping desperation with which Bush sings, “Heathcliff, it’s me, it’s Cathy, I’ve come home” on Wuthering Heights. On the page, without that context, such lines would hardly stop the reader in their tracks. Read Tennant’s lyrics to West End Girls and you can see how he was emulating the collage of urban voices in TS Eliot’s The Waste Land but not how he and Chris Lowe refracted it through a homage to New York hip-hop.
The strongest case for lyrics as literature was made by the Nobel committee when it awarded the 2016 prize for literature to Bob Dylan – the first songwriter to receive that honour. But the committee skated over the reasoning for the decision and its implications, saying only that the award was for “having created new poetic expressions within the great American song tradition”. True enough, but does that make it literature or just very good songwriting?
Dylan himself seemed fantastically uncomfortable with the whole affair. When he was asked in 1965 whether he saw himself as a poet, he famously responded, “Oh I think of myself more as a song and dance man.” Very few songwriters explicitly aspire to the status of literature, because they know that songwriting can be fast and instinctive and even gobbledegook can delight as long as it sounds good. It is hard to square the meticulous exegesis of some Dylan lyrics with the knowledge that he did not sweat over every syllable. As Neil Tennant writes in One Hundred Lyrics and a Poem, “Every lyric-writer also has a guilty secret: the sound of the words is sometimes more important than the sense of them.”
Leonard Cohen, who began his career as a poet and novelist before deciding that music was a better way to make a living – a kind of Ishiguro in reverse – is one notable exception. His lyrics have a rare solidity, meticulously crafted to stand alone. But even a lyric as perfect as Hallelujah, which took him five years to finish, tells you that it wants to be sung: “It goes like this, the fourth, the fifth / The minor fall, the major lift.” And that immense voice, pitted and weathered like a monument, tells you that these words have been not just written but lived.
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| ‘A a song lyric works quite differently from a poem’ … Kazuo Ishiguro. Photograph: Chris Pizzello/Invision/AP |
‘A a song lyric works quite differently from a poem’ … Kazuo Ishiguro. Photograph: Chris Pizzello/Invision/AP
Pressed to clarify the logic behind Dylan’s literature prize, the Nobel’s permanent secretary Sara Danius pointed out that Homer and Sappho wrote poetic texts to be performed aloud with music but they can now be read with pleasure, so why not Dylan? But of course, we don’t have countless hours of recordings of Homer and Sappho to tell us how they wanted those words to sound. While songs can be covered, rearranged and even melodically transformed, the original recordings still have an authorial weight that is hard to shake, especially for fans who are in the market for books of lyrics.
The Summer We Crossed Europe in the Rain is a fascinating test case. Although Stacey Kent is a Grammy-nominated artist with 2m albums sold, her work is not so famous that her phrasing will be stamped into the brain of every curious Ishiguro fan. These lyrics can still be read as extremely short stories. He took the image of the tram ride in Breakfast on the Morning Tram from 1995’s The Unconsoled, the novel of his that most resembles music because it prioritises mood over meaning – or rather, the mood is the meaning. It is no coincidence that the protagonist who wanders through a dream-like central European city, is a pianist. When Ishiguro writes that songs allow for “narrative vacuum and gaps; an oblique approach to the releasing of information”, he could also be describing his fiction.
These lyrics also dwell on travel and the slipperiness of human connection but they contain more hope and romance than Ishiguro’s novels. They occupy the timeless realm of jazz standards: trains and rain, old movies and exotic locales, myriad variations on the theme of love. The journey in Bullet Train becomes a metaphor for the way time slips away: “It feels like we’re not moving / Though I know we must be moving … Way too fast.” The second verse of Craigie Burn, with its deft sketch of a life derailed, performs the classic songwriting trick of leaving the listener/reader to imagine the full story.
Does that make it literature? Tellingly, the introduction to almost every book of lyrics contains a semi-apology. It is a “strange beast”, admits the novelist David Mitchell in his introduction to Kate Bush’s How to Be Invisible. The page is “not the natural habit of a song lyric”, writes Neil Tennant. For Jarvis Cocker, “seeing a lyric in print is like watching the TV with the sound turned down: you’re only getting half the story.”
Ishiguro likewise maintains, “it remains my belief that a song lyric is not, and works quite differently from, a poem,” encouraging readers to listen to Kent’s recordings. That is, after all, what these words are for.
To buy The Summer We Crossed Europe in the Rain: Lyrics for Stacey Kent by Kazuo Ishiguro go to guardianbookshop.com. Delivery charges may apply.
Marina Abramovic Rhythm 0 Naples Italy1974
If you're going to cover a song, I realised years ago, you have to own the song for yourself. You have to make it your own. And the way you do that is to find a way of singing the song in a way the original artist hasn't even thought about. Find a unique way of entering the song. That's exactly what Christy Moore does with this song.
So as part of my tribute here and elsewhere to Shane McGowan, here's Christy Moore singing Fairytale of New York.
There's a great documentary about the making of Fairytale of New York but I haven't been able to post the complete documentary. However here's a link to take you to it.
Click here for the link to the full documentary, The Story Of The Pogues & Kirsty McColl Fairytale of New York The full Story.
I hope you enjoy it.
We watched him perform at the Hay Festival in 2018. We managed to buy a couple of the last tickets for the gig. We were right up in the front. When he started with the band, the place erupted. People who were politely sitting in rows behind us, suddenly got up off their seats and rushed to the stage.
It was a great gig!
from Bloodaxe Books
After prison he turned from crime to music and poetry. In 1989 he was nominated for Oxford Professor of Poetry, and has since received honorary doctorates from several English universities, but famously refused to accept a nomination for an OBE in 2003. He was voted Britain's third favourite poet of all time (after T.S. Eliot and John Donne) in a BBC poll in 2009. In 2011 he was poet-in-residence at Keats House in 2011, and then made a radical career change by taking up his first ever academic position as a chair in Creative Writing at Brunel University in West London.
He appeared in a number of television programmes, including Peaky Blinders, Eastenders, The Bill, Live and Kicking, Blue Peter and Wise Up, and played Gower in a BBC Radio 3 production of Shakespeare’s Pericles in 2005.
Best known for his performance poetry with a political edge for adults – and his poetry with attitude for children – he had his own rap/reggae band. He produced numerous recordings, including Dub Ranting (1982), Rasta (1983), Us and Dem (1990), Back to Roots (1995), Belly of de Beast (1996) and Naked (2004). He was the first person to record with the Wailers after the death of Bob Marley, in a musical tribute to Nelson Mandela, which Mandela heard while in prison on Robben Island. Their later meetings led to Zephaniah working with children in South African townships and hosting the President’s Two Nations Concert at the Royal Albert Hall in 1996.
His first book of poems, Pen Rhythm, was produced in 1980 by a small East London publishing cooperative, Page One Books. His second collection, The Dread Affair, was published by Hutchinson’s short-lived Arena imprint in 1985. He published three collections with Bloodaxe, City Psalms (1992), Propa Propaganda (1996) and Too Black, Too Strong (2001), the latter including poems written while working with Michael Mansfield QC and other Tooks barristers on the Stephen Lawrence case. His DVD-book To Do Wid Me: Benjamin Zephaniah live and direct (filmed by Pamela Robertson-Pearce) followed from Bloodaxe in 2013, including poems drawn from all his collections.
His other titles include his poetry books for children, Talking Turkeys (1994), Funky Chickens (1996) and Wicked World (2000), all from Puffin/Penguin; his novels for teenagers, Face (1999), Refugee Boy (2001), Gangsta Rap (2004) and Teacher’s Dead (2007), all from Bloomsbury; The Bloomsbury Book of Love Poems (1999); Schools Out: Poems Not for School (1997) and The Little Book of Vegan Poems (2001) from AK Press; and We Are Britain (Frances Lincoln, 2003). He published his autobiography, The Life and Rhymes and Benjamin Zephaniah, with Simon & Schuster in 2018.
Click here for an obituary from The Guardian
Click here to listen to Dog Eats Dog. It's the fifth episode of the Radio 4 documentary, Legend, The Life of Joni Mitchell.
Click here for the third instalment of this extraordinary documentary about Joni Mitchell as she turns 80. This episode is called Blue.
On 7th November 1943 Joni Mitchell was born. This year on the 7th November she'll be 80 years old. To celebrate her birthday I'm going to post a link to each of the 6 episodes of a documentary about her life.
My plan is to post a photo, post a link to the documentary and post videos of performances given by her over the years that i've really enjoyed.
I hope you enjoy them too.
I came upon this video this morning and thought it was great. It was the sheer joy and exuberance of singers, band members, soloists and conductor that made me think of you. So I thought I'd share it.
I thought you'd like this photograph. I stumbled on it today going through my fb feed. Apparently it's the most detailed photograph of a solar eclipse ever taken.
While recovering from my second bout of Covid and still coming to terms with living the rest of my life from a wheelchair, I thought I'd put together some favourite music videos.
My original intention is to put up a list of say at least 8 specifically made music videos. However, there are videos on YouTube that have been edited from much longer performances that I love watching, and will include these as well I expect.
I'm not gonna put these in any order, although I do think I know already which video I think is my number one all time favourite music video.
I suppose I ought to note down what I think makes a good music video. However I don't want to make a big fuss about this. I wanna be intuitive and even a little impulsive. But I also don't want to lead you down Cull du Sacs. I don't want to waste your time.
So I'm choosing good songs. Though not necessarily my most favourite songs.
I'm going to be posting videos over the next few days or perhaps a couple of weeks.
Anyway, here's a first video.
I've only watched it once. And that's today, the day I first posted this post. Perhaps it was watching this that inspired me to post this challenge.
I wrote this after I was discharged from hospital last year in 2022. But it's been in draft form ever since.
I noticed it this evening, scrolling through my blog posts and realised I had posted nothing about what's happened to us.
So it's been a year since my right knee was amputated. But this whole thing probably started at least 3 years ago now in 2020.
But my memory is shot.
I wouldn't trust it if I were you.
But this account is as close as I can come to what happened to me.
Over the next few months I'm intending to edit this post, add some photographs and write a second account following on from this one.
All I've got is a series of events but I can't be sure the the order of them.
I've got to lay them down quickly before they disappear completely.
At Home
In 2020, I was given a new prosthetist. She made a new above knee leg for me. Despite being considered a specialist above knee prosthetist, I developed a sore and slowly it developed into an ulcer. The ulcer developed along the line where my above knee leg is sealed onto the prosthesis. Secretly, I blamed my prosthetist and the long line of prosthetists I saw during that period for the ulcer, who tried to mend it. I went back to Queen Mary's hospital regularly - at times almost every week to have the problem fixed. Every prosthetist I saw, including my own prosthetist, tried to put it right, but they all concluded that the leg fitted well, and they could see no reason why the prosthetic leg should create the ulcer.
This went on for quite a while. I cleaned and dressed the small ulcer. It wasn't growing or getting smaller. It wasn't infected. But it wasn't right. It became painful. I only walked when I had to walk. Whenever I got home from teaching or going out I transferred into my wheelchair.
The ulcer was dressed regularly and I just carried on. As you do.
At the same time as the ulcer was developing on my left above knee amputated leg I began to feel fatigued.
Everyday it was the same. I woke feeling that lead weights were attached to me, trying to hold me down. It went on like this all day till I went to bed.
I'd wake the next day and it was the same. It didn't get any worse or any better. I carried on working. I didn't connect the ulcer to the fatigue.
The GP Surgery, hospital appointments and work
Until February / March 2022 the G.P surgery phoned with the results of my regular 3 monthly blood tests. The GP said, my results showed high levels of inflammation. He'd contacted Doctor Kiely - the doctor who managed my recovery from Polyarteritis back in 2004. He was based at St George's hospital. The GP wanted to inform Doctor Kiely of the situation and ask him to call me in for an appointment.
An appointment came to see Prof Kiely. In the consultation Prof Kiely said confidently that I didn't have a resurgence of Polyarteritis - an autoimmune disease I'd developed when I was 17. He was confident that something else was causing the high inflammatory markers, the anaemia and low red cell blood count. I think he put all my symptoms down to a virus.
So we went back to our local G.P surgery with one question.
"If this isn't Polyarteritis, then what is this?" The GP said she'd send me off for tests.
She was one of the surgery's GP team. I'd never seen her before. She seemed in her 20's. I was pissed off and didn't expect this consultation to lead anywhere at all.
About the same time [as we were seeing the GP] in March 2022, I experienced fatigue. I remember teaching, but feeling the whole time as if I was being weighted down by a huge stone hanging over a long drop. Other symptoms developed, these included sleeplessness, loss of appetite and sudden short fevers. I assumed it was a virus. It would pass.
A couple of weeks passed. I continued to teach.
But then I went off sick.
The GP we'd seen who recommended tests, referred me to have three scans under three different medical teams, these were, heart, lungs and kidneys. The appointments came fairly quickly. Scans were either CT scans or MRI scans.
Katy went to the Bologna Book Fair on 23 March. I had been officially sick for 8 days when she left.
At home I went ON GUARD!
I started spending the night sitting up in an armchair in the sitting room. I was on guard twenty four hours a day. Seven days a week. On guard against an unseen enemy. I was a body knotted in anxiety and stress. I couldn't relax for one moment. And yet the invisible enemy was upon me. Destroying whatever it could of me. It was absolutely awful. I was defenceless! I was powerless!
I was on guard for weeks. Always watchful. Drifting into a few moments of sleep here and there. By this time I wasn't eating.
And then one morning in mid May, my left stump was covered in purple patches. We knew exactly what this was. This was vasculitis! We'd seen it before in 2004. And I'd known it from the 1970's & early 80's. It's a symptom of Polyarteritis Nodosa.
Untreated we knew these purple patches would become ulcers and attack the stump. In 2004 vasculitis resulted in the amputation of both my legs. The left leg amputated above the knee, the right, amputated below the knee.
And of course, when we saw the purple patches, we immediately tried to contact Prof Kiely. But he was away.
Meanwhile the GP's heart scan showed an enlarged aorta. But this was normal. They'd check it again in a year or two.
We can't remember anything about the lung scan. But whatever they found they considered wasn't causing me any harm.
At Kingston Hospital
We had to wait a bit for the third scan. A kidney scan. And wait a bit longer for the results. When we did see the consultant urologist at Kingston Hospital, he said that I had kidney cancer. He said he'd need to remove the whole kidney. He said once it was removed everything would be alright. I wouldn't need any further treatment.
And then we told him about the vasculitis.
By the time we had this consultation - with the consultant urologist - the vasculitis was all over the left leg. It was early days. There were purple patches. No signs of ulcers yet.
He had a look at the leg and said he wouldn't operate until the vasculitis was all sorted out.
We needed to consult with Prof Kiely again.
Despite Prof Kiely being on holiday, we had the first of several phone consultations. But he didn't change his mind about his idea that the something else was causing the illness. Instead he said the cause of the vasculitis was due to the cancer. He said get rid of the cancer and the vasculitis would go away. He told us to go back to the consultant urologist and tell him to remove the kidney as soon as possible!
So with the support of one of the GP team at our local surgery and a rheumatologist at St Thomas's hospital it was decided to remove the kidney.
By this point the ulcers were getting significantly worse. Right from the start, the ulcers were not being treated at all. This was a deliberate policy set by Prof Kiely. The medication needed to treat the vasculitis would inhibit healing the cancer. As well as this, Prof Kiely was sure that - with the cancer removed - my body would heal the vasculitis by itself. The cancerous right kidney was eventually removed at Kingston Hospital in July.
But the vasculitis continued.
I was ready to be discharged by the urology team at Kingston hospital but the ulcers on my legs were still progressing. We've got photographs of the progress of these ulcers from early on. I'm not going to share them with you though. The ulcers were so shocking!
Just before I left Kingston hospital, we did see a rheumatologist. He recommended a biopsy of the ulcers. But the urology team at Kingston were only interested in the cancer. And they discharged me. Eventually an appointment came for a biopsy. When we went for the biopsy the doctor at Queen Mary's hospital, Roehampton. was so shocked by the ulcers he told us to go to St George's immediately. He said St George's hospital is the place where the ulcers could be treated properly. He said the best and quickest way this could be done is if we went to A&E.
At St George's Hospital
So we drove to St George's hospital A&E.
That was one of worst experiences we had during this time.
We arrived at around 4.00 in the afternoon and joined the queue to be seen. First by a nurse and then by a doctor. I sat in the wheelchair. Katy sat in a chair.
We waited. We waited! And we waited! And waited!
At some point in the middle of the night we were moved to another part of the A&E department. It was quieter. There were fewer people. There were curtains. There was a bed. There was a chair. We were told we were being admitted to the hospital but were waiting for a bed to be freed up.
We realised that wasn't going to happen for hours yet. And so we waited and were admitted onto a vascular ward later that morning.
At first I was admitted into an 8 bed bay. It was noisy. It's difficult managing 8 bored and very unwell men. So I was pleased that one day I was transferred into a single bay.
And then one day one of the rheumatology team said that the ulcers were so bad on the right leg the only way forward was to amputate the knee.
And that is exactly what they did at St George's hospital at the end of August.
