Location: Christchurch, Dorset, UK
Yes, this is the longest time in the history of this blog without an entry from me. No, nothing's wrong. I'm on new medication which knocks me out. Completely. Plus I've been trying to put my conscious moments into designing this garage studio conversion.
More soon. Sorry.
Promise. Jxx
Location: Christchurch, Dorset, UK
So here I am back in Dorset! Had a really good trip down with Izzy, despite fears of exhaustion etc, and got here in record time! We spent the next day, which turned out to be gloriously sunny and HOT (!!) postponing Izzy's trip back, bimbling round Christchurch and the Hamble with the roof open. I felt really good - probably the best I've felt for ages. Paid for it yesterday, however - semi-comatose state all day, and lots more pain. You can't win them all, I guess.
Today? Set up printer and scanner here, and get a call in to Building Control. And start working on design/construction programme. Time to get busy! Jx
Location: Louth,Lincolnshire, UK
Hi.
Been a bit quiet lately - and I was thinking it was because there's not much going on, but actually I have been quite busy. I've been completely absorbed in designing Mathew and Sally's conversion, plus there was some more drawing work to do for the Fashion Park project in Dubai. I get obsessive - you know, working until 2am, but I really enjoy it. It's deeply satisfying. What else? Aboodi came up to see me, which was great - another one-day marathon trip from London; and Olly came up to see me for a few days too. Plus Roger and Trish came across from Chester, again on a one day trip. So I've been spoiled rotten really.
How am I? Not too bad I suppose. still very weak, and although I can eat more things I still don't have much appetite, and I'm still vomiting. Plus the pain can be a nuisance. But, AT LAST, the weather has got warmer and there is sunshine!! I was beginning to think the winter was never-ending! We had a brilliant day on Tuesday fixing the convertible roof on my car, which kept sticking, and looking at the reversing assist buzzer. At one point in the afternoon the whole family seemed to be jammed in the car, legs and arms sticking out of the boot and the back seat, each holding either end of spanners and passing nuts and bolts to each other in the warm afternoon sunshine. A scene worthy of that Dutch artist - you know.
So, on Sunday next we pack up the Saab with as much as we can cram into it and Izzy and I set off for a new life in the South, which is all very exciting. Bridget was a bit concerned about my lack of energy again, so we had another blood test done to check on my anaemia - but actually I am ok, so no more transfusions yet. Going to see the Doc about pain control this morning, and if it's warm, we might even put the roof down on the car. Wooh hoo!!
More soon. J
Location: Louth, Lincolnshire, UK
What's the name for that little plastic (or metal) tube that finishes off your laces?
Location: Louth, Lincolnshire, UK
The thing that really worried me about the Cyprus Financial upset was that the government changed rules that I thought were inviolable, based on the trust that enables our society to operate at all. It was to be a 'once-only' charge of 10%. But once you've done it, why not do it again? And how about 15%? Or 25%?? My delicious feta salad, marinaded in oil and chargrilled sweet peppers, would not be so delicious if I had to give up my life savings to eat them . . . .
Location: Louth, Lincolnshire, UK
Yep, that last post wasn't too upbeat - I feel that there are sometimes things that have to be said. But it's not all gloom and doom. I mentioned the new medication regime - that's been interesting! It's completely different and it took us a few days to get that sorted out. I think we have now, and it's good! I've got MUCH less pain, and it feels like it's catalysed more energy. I'm definitely more active, and feel much more myself. I can walk better, climb stairs (albeit slowly) and eat small amounts almost normally. And perhaps the best bit is that a side-effect is feelings of euphoria. Euphoria!! We like that!! It's changing our plans. I think I might actually be able to do some VO work (voice-overs), and drive moderate distances.
But perhaps the most critical thing is that the hospital does not propose any more specialist treatment. That means I do not need to be based near to a specialist hospital - so where will I be based? I don't have enough income to live independently, so it means a solution involving the family. Fortunately Mathew and Sally have been planning to convert the space over their double garage into a studio apartment, they had wanted me to do the design, and build it with Rene (my South African builder mate), and they are ready to start NOW!
The only other realistic accommodation alternative is to stay here with Brian and Bridget (unless there are other offers - speak up!), but a 50-mile (say) driving radius in Lincolnshire includes Grimsby, Hull, York and Lincoln - whereas based on the South Coast it brings me within reach of a lot of my friends, and lots of places I actually want to go to.
So I'm VERY excited by all that - not least because it needs to start soon. Brian has been waiting for a heart operation for months, and it will happen at the end of April - so I need to be away from Louth for a while, which means I'll be based in Christchurch from 24th April, then probably to and fro whilst we're designing and doing the alterations - and then I'll be based in Dorset!!
One of the projects I did back in the early 2000's was a studio-to-one bedroom conversion in which I was inspired/heavily influenced by Terence Conran's 'Small Spaces' (brilliant book), with all sorts of clever tricks making the most of a tiny space. Rene (and the other guys on the job) loved it because it was so ingenious - and it looked good! This looks like the way we'll go with Mathew and Sally's conversion. You know how Ikea do these clever set-piece apartments in their stores where they squeeze the maximum from a tiny floor area? That sort of thing. But better.
Today was lovely. I sat outside in the sun for more than two hours, loving it. We need more like this!
Off to bed now.
Location: Louth, Lincolnshire, UK
I’ve been quiet, but there’s not been a lot going on. Bridget and I drove successfully to Christchurch ( drove the last third of the way), and we all had my Birthday Tea together. Bridget caught the train back the following day, and I rested and slept for 2 days! – and that set a pattern. After such an auspicious release from hospital, we were all expecting me to be eating better, becoming more lively and active with each passing day. But it didn’t happen. I stayed sleepy and terribly weak, and did very little. Eating better, for sure, but little else positive to report. On Good Friday we all drove over to Brighton: the girls saw their birthplace, and I established myself in Angel House overlooking the sea, and received visitors – which was really, really nice.
But there’s no point in kidding ourselves, least of all me kidding you. For all the pain and distress of the treatments, apart from making my eating easier (which is great, don’t get me wrong), I have continued on a slow decline. I can only walk a few yards now, I can’t drive except a short way round the block, I can’t do photography or voice-over or play music. I might be able to draw, but only on a good day. This is not what I’d hoped for. This is not a life.
The family organised themselves to ferry me back to the North on Easter Sunday. Mat and Sally drove halfway, we met up and Bridget drove me home. We saw my specialist today at Grimsby Hospital, and he said pretty much the same. He’s given me a new pain control regime (because the pain has been getting worse), and confirmed that there’s no further treatment they can offer or would recommend. Hey ho.
We’re looking at the end of the road.
More soon
Jx
Location: Louth, Lincolnshire, UK
It's my birthday!! Thanks for all the messages on Facebook! Feeling so much better. They let me out of hospital yesterday afternoon, having topped up my blood and stopped the internal bleeding - and, joy of joys, they've dilated my oesophagus so my eating is MUCH easier! So I've had two days now of eating small but civilised amounts, and am beginning to feel almost like a real human being!
Today we will carry out our earlier plan - Bridget and I will drive down to Christchurch so I can share my birthday with Mathew and family, and Bridget will get the train back to Louth on Friday. So it's 8.30 am here and we're just finishing off packing up for the trip. Woo hoo!!
Bridget here again with an update
John has had 3 units of blood and looking and feeling better. He has also had an endoscopy this morning and they have lazered some of the areas to stop some of the internal bleeding. He hopes to be home tomorrow and will be writing his blog again very soon, I' m sure!
Hello, Bridget here, John's sister, writing for John
He just wasn't picking up after his radiotherapy ten days ago, so I arranged a blood test for him which showed his haemoglobin level to be critically low. So he's back in hospital for transfusions. He says " I'll be back in contact in a few days. Please don't forget about me!"
As if we could !!
Location: Louth, Lincolnshire, UK
I'm blessed. I'm blown away. I have the best friends anyone could ever wish for. Here's why (actions speak louder than words):
back in November when I was in Brighton my dear friend Sevanti told me of a plant extract concentrate she had found in the course of her research into things to help her mum, who was dying of cancer. It was too late for her mum, but she was struck by the authenticity of the reports, and the power of the effects, and recommended it strongly to me. It's called 'Flavon', and comes jars of a sticky, jam-like substance - but its EXTREMELY expensive. Unbelievably dear. Sounded good to me until she came to the price, and at that point, given the uncertainty of my finances - and the fact that I couldn't eat anything anyway, however good - I decided to put it on the back burner.
Last Friday a large, heavy, anonymous box arrived. I was in a daze all weekend, but on Monday I opened it - a box of Flavon!! It seems that four of my friends in Brighton have clubbed together to buy me this. Its just so amazing, so thoughtful, so caring that someone would do that. So, Pete, Kevin, Phil and Sevanti - you're the best friends that anyone could wish for. Or dream of.
A deep, heartfelt 'Thank you'.
Location: UK
Saturday was another pretty rough day. Everything hurt. I just wanted to curl up in a ball and sleep. Today (Sunday) slightly better. Fed up with this. More radio tomorrow. Jx
Location: Louth, Lincolnshire, UK
Well, it was a rough night. Lots of pain, lots of nausea, had to try to sleep sitting up, dazed and drugged with the liquid morphine we've got. Felt really awful in the morning, but strangely, I managed to eat a bit of croissant - which was delicious. It makes no sense. Then off to Hull for radiotherapy. We had to wait around for ages whilst they took blood samples and got them tested, because it's my first time - but the results were good. Haemoglobin down a bit, but not yet critical. The radiotherapy is a doddle! Literally 10 mins: take of upper clothes, lie on platform, machine buzzes twice, finish! And VERY pretty nurses.
Went back again yesterday, and it was all over in no time. It was a beautiful day, with clear blue sky from horizon to horizon, so we went to look at Beverley, a pretty historic town nearby in South Yorkshire, and then came back on little country roads, avoiding the traffic and finding some charming villages and glorious views. No camera, sadly, but I'll rectify that today. I've decided to keep my D40 in the car so I've always got one handy.
Yesterday evening I managed to eat a bit, which was great! But it's strange: cream cheese will go down, but houmous won't. Last night was comfortable, and we're heading out to Hull again shortly.
Be good!
Location: Louth, Lincolnshire, UK
Just following up on the controversial piece Kate referred to in her recent message - 'Unpleasant things about John Lennon' - here's a song by satirist Mitch Benn picking up on one of the themes - hypocrisy.
http://www.youtube.com/watch?v=2zP0xYv0sZk&play...
Enjoy!
Location: Louth, Lincolnshire, UK
We've had a bit of a setback in the last 24 hours. I was doing well, eating and feeling really good - but yesterday afternoon I found I couldn't swallow anything - not even water. Which means no food, of course, and not even painkillers. Curiously, this morning I was able to eat again, but at 11.00 is just closed again, and I couldn't get anything down - except water sipped very slowly through a straw. Bridget was worried, and sought advice from the hospital. They said the best thing I could have would be radiotherapy to shrink the tumour and open up my gullet again - and thankfully that starts tomorrow. It will take a while for it to take effect, though, so meantime its just . . . . struggle through as best we can. I'll keep you posted. Jx
Location: Louth, Lincolnshire, UK
* * * * NEWS UPDATES * * * *
• 27 Feb. RAdiotherapy starts.
• 13 Feb. Meeting with consultant to discuss CT scan result. Cancer is held at bay - no development since October - but chemo is hitting me too hard, so we are going over to radiotherapy.
• 6 Feb. Back into hospital for blood transfusions.
• 28 Jan. CT scan booked for 5 Feb.
• 24 Jan. Back from Christchurch.
• 10 Jan. Off to Christchurch in Dorset to stay with Mathew and Sally and family for a bit. Will try to meet friends nearby, and make a trip to Brighton one day.
• 6 January. Wow! My third chemo session last Thursday was NOTHING like the last one - this time I was back on my feet after 36 hours
• 24 December. Out of hospital in time for Christmas - and I can eat again!! Big improvements - but now too weak to walk
• 13 December. Second dose of chemo knocked me flat - and I was hospitalised for a week for rehydration, blood transfusions and an endoscopy
• 10 December. South of England tour happened. Feeling weak but OK
• 22 Nov First chemo treatment -- not too bad! But learned that they will do 8 cycles of chemo, which is 24 weeks!!!
• Dubai life all packed up and in storage, Rent terminated etc.
• 19 Oct Diagnosed with oesophageal cancer (cancer of the gullet).
________________________________________
Yesterday we went to the hospital in Hull to find out about radiotherapy. It was a good trip – over an hour, but pretty much direct, and the last bit is over the spectacular Humber Bridge – not quite in the same class as Norman Foster’s bridge in France, but not that far off. It is HUGE, with an unbelievable central span, supported by what look like unfeasibly fragile cables. Straight off the other side, a short way up the road, and the nice, crisp, modern hospital is on the right. Easy!
They explained that I will get 5 radiotherapy doses, each of which lasts about 10 minutes, on 5 consecutive days (allowing for weekends). And it starts next Wednesday (27th)!! They got me to lie exactly as I will for the treatment, and they marked me with a tiny tattoo as a target for the radio gun. After-effects are apparently fatigue and (surprise-surprise!) nausea. And maybe some sore skin in the target area. Doesn’t sound too bad does it?
The Dubai company has cancelled my South Sudan job. Bummer. That’s not very nice, but it happens. At least I’m not out of pocket.
Did you see Jo’s responses to my thoughts about John Lennon? Good for her! She’s been one of my most loyal, long-standing readers – right back from the beginning. What she sent is interesting – about John being one of the ‘100 Greatest Guitarists’. According to Rolling Stone magazine, he’s no 55. Which begs a question – what does ‘greatest’ mean? This article refers to a few specific phrases only, and the other article she refers to: ‘John Lennon’s Top 10 Guitar Moments’, whilst referring usefully to examples that I couldn’t find, actually starts with the words: “John Lennon was one of the greatest songwriters of the rock and roll era, with or without Paul McCartney and with or without The Beatles”. Which is fine – I don’t think many of us would argue too much about that – but does being a great songwriter (and a great, iconic and inspirational guy), who plays guitar, make you a great guitarist? That’s what I’m not so sure about. Even he didn’t claim to be a great guitarist. Sure, he can make a band ‘drive’, and there’s power and emotion in his playing – but he’s nowhere near the technical brilliance of Gary Moore, or Steve Vai (for example), or even some of the unknown guitarists that I’ve played with. So even with the evidence before us, I’m not convinced.
Sad footnote: scroll down to the comments beneath ‘100 Greatest Guitarists’, and you’ll read a typical series of bitchy, personal exchanges between readers, ostensibly about Kurt Cobain, with each trying to score points off each other for grammar. It’s sad to see how these ‘Comments’ opportunities so frequently degenerate into slanging matches like this. Especially when people start comparing or contrasting musicians.
Hey ho.
