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John headed for the desert, now faces cancer

At a time of life when most sensible people are hanging up their clogs and settling back to .. well .. do less, I seem to have been re-inventing myself again and changing everything. I started this when I moved to Dubai in Dec 2005, and it's been going for 7 years now, with over 20,000 visitors. Welcome! Due to recent unexpected health issues, this is turning into the account of a journey though cancer - but I guess that's still travel, of sorts. Sorry if it's not your cup of tea. My post of 4 Nov pretty much summarises how I feel about it - see what you think. On we go!

Diary Entries

Monday, 03 June 2013

Location: UK

John's Remembrance Soirée
This will be held in Brighton on Saturday, June 15th between 2pm and 9pm at Angel House, 1 Brunswick Terrace, Hove, BN3 1HN.

John wanted a short period for contemplation, along the lines of a Quaker meeting. A chance for people to sit quietly and remember or to say a word or two if they feel moved to do so. This quiet time will be between 3pm and 4.30pm approximately so please honour this period and do not arrive between those times.

John wanted us to celebrate life, as he did, so afterwards we'll do just that. Please bring food, drink, musical instruments and happy memories to share and stay as long as you can.

A huge thank you to everyone who is helping to bring this special day together for John. He would be so delighted.
Bridget. Xx

Saturday, 25 May 2013

Location: Bournmouth, England

Bridget here
I am very very sad and sorry to tell you that John died peacefully at 4.00am this morning. John made it clear to us that he just wanted a party after he died and that is what we shall be arranging.
To quote John - watch this space.

Friday, 24 May 2013

Location: Christchurch, Dorset, UK

It's been quiet, and the most prominent thing has been dealing with my new medication. It's good, but it knocks me out. Probably the most extreme example was when I woke up on Saturday morning, intending to get up and get on with things - lovely bright sunny day, and plenty to do. I thought I'd just put my head down for a 15-minute snooze, and then get on. I opened my eyes, and the the light in the garden had changed. 'That's odd' I thought It was 4.30pm. I'd lost almost the whole day!! It's very disconcerting - what I've found is that when I close my eyes I just don't know if it's been for 5 minutes or 5 hours!!

Meantime I'm trying to get on with design work on the garage, which is very exciting - but my attention spans are just so short!!

Wednesday, 15 May 2013

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

Friday, 19 April 2013

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

Wednesday, 17 April 2013

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

Tuesday, 09 April 2013

Location: Louth, Lincolnshire, UK

What's the name for that little plastic (or metal) tube that finishes off your laces?

Monday, 08 April 2013

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 . . . .

Saturday, 06 April 2013

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.

Wednesday, 03 April 2013

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

Thursday, 21 March 2013

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!!

Tuesday, 19 March 2013

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!

Friday, 15 March 2013

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 !!

Saturday, 09 March 2013

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'.

Monday, 04 March 2013

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

Friday, 01 March 2013

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!

Thursday, 28 February 2013

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!

Tuesday, 26 February 2013

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


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Recent Messages

From Sass
Hi John, im just back from Dubai and I bumped into .. Ricardo and Javier !!!! who send love!:) random to meet them.
Sending love from Brighton
Love Sass x
Response: Great! Love to you too xx
From Mary
Hey John - where are you and HOW are you??? Long time no hear and getting a bit worried... xxx
Response: Hi Mary . I'm OK - VERY sleepy!
From Oliver Tuvilla
Hi John,

how are you doing boss? Wishing and praying for your full recovery.

O
Response: Thanks, Oliver! Much appreciated!!!
From Oliver Tuvilla
Hi John,

how are you doing boss? Wishing and praying for your full recovery.

O
Response: Hi Oliver!! Thanks for the good wishes - very good to hear from you
From Mary
Hey John - how are you doing?? Long time no hear. Hope you're OK.... xxxx
Response: Hi Phil - no link on here (designed to protect your privacy, probably), so will check e-mails. Love and hugs xx
From Phil
Hi John.
Can you check this out.
Ping Xiao
Look forward to your next update

Phil
Response: Hi - dates coming . . . .
From Izzy
Hope you're feeling a bit better today after all your travelling about. Big hugs xxxx
Response: All the better for your hugs, Iz!!!
From kevin
Hi John.. Great to hear you back in Dorset. Will see when I can get over as I would love to see you. so impressed you already on to Building Control.. Only you John you are the best..!! Be in touch soon.. Much Love Kxx
Response: Available all this week Kevin - get on that bike! Seriously, though, I could drive over no problem. I'll get back to you Jxx
From Izzy
Thank you John for a glorious day down South. See you soon. Love and hugs XXX
Response: Yes, it was fabulous. Hugs!!!
From James S
Hi John
it looks like I am going to be able to get down to see you on Monday 13th May. Does that suit? I imagine it will be early afternoon if that is OK with you.
Incidentally, you may like to know that I quit the band. Long boring story I will tell you about over a cuppa. See you soon
J
Response: That date sounds perfect, Mr J. Looking forward to it! Yep, I heard you quit (news like that travels fast!), and was looking forward to the full story in due course. Good luck to you and your intended!
From Evi
Hi John. How are you? Hope treatment and recovery are going well. It's a beautiful Saturday morning here in Bali and you crossed my mind :). I want to thank you once again for the opportunity you have given me in Abu Dhabi. If it wasn't because of you, I wouldn't be learning what I learnt in Cracknell and experienced another 4 good year in Abu Dhabi. All that learning and experience have become very useful in where I am now. So THANK YOU John! :) And know that you are one of few people that have special place in my heart :) Evi
Response: And you'll always be special for me too, Evi! xxx
From kevin
Hi John. Great to see latest blog.looking forward to you being back down south & getting time together..when you can fit it in I have small design project. Be great to be able to pop over & see you & I know you will be visiting Brighton so I will book my audience now as I know you been selling out at Phils..!! Say Hi to Izzy.. Much Love.. Kxx
Response: Looking forward to catching you too, Kevin! Soooooon . . . . Wigs xxx
From Maggie
Don't forget your trusty camera John - how about documenting some of this strange life - like the limbs of your entire family sticking out of your car !
Maggie
xx
Response: Yes - I nearly went back to get the camera to capture that moment - but I was jammed in the back too, and the moment passed. Still, you got it! I have captured some moments though, Maggie xxx
From Sass
Just to say HELLLLOOOO, hope I don't miss you in Brighton again xx will keep in touch with Phil x big hugs to you
Sassy x
Response: No chance of missing this time round, Sass!! J xxx
From Mary
Hi there John - good to hear that you're eating more, but sorry to hear that you're in a lot of pain. Ric and I will be over to the UK in July and it would be really great to see you. Whereabouts will you be staying in the South? Perhaps we can all meet for lunch? A big hug Mary xxx
Response: That would be fantastic Mary!!! I should be staying near Bournemouth then, so meeting up is a must!! Love and hugs xx
From James S
Hi John

Jihane and I are coming to the UK on the 9th May and staying for a few days in London and winchester. it would be lovely to pop in and see you if we can. Whereabouts will you be staying then?

Glad to hear that you are feeling a little better and that the sun has come back.

J
Response: James! That would be FAB!!! I expect to be staying in Christchurch at that time (only 40 mins from Winchester), so meeting up must be considered COMPULSORY!! Woo hoo!! The Chief
From Jacqui
Hey John, was so lovely to see you a couple of weeks ago.. I sent you an email.. not sure you got it? Can you email me your address as want to post a CD with the pics.. I also sent a link on facebook and via email.. thinking of you lots.. look forward to seeing you when you are back down south.. much love xxxx
Response: Hi Jaxx - sorry not to respond - I have 150 un-read e-mails, mostly junk, and I do miss things. And I rarely do Facebook these days - turning into a recluse! But I won't put my address here because this site is fully public. So look out for me on e-mail or Facebook!
Jxxx
From Simon
Hi Janni,
I'm at a loss for words, sitting here tearful reading your words. Wish u all the best as usual and all my love.
Xx
From Teresia
Hi Han

There is always room in the inn anytime. Hope to see you soon

Luv as always
XXX
Response: You're a star, darling !!!
From Peter Heaney
Don't listen to them, John. It is not an Aglet - it is a plastic (or metal) thingie. Ask Big Ears, that is what he calls it.
Response: Phew. Thanks, Peter - that's reassuring.
From Mark
Ummmm.....possession is 9/10ths of the law?? Errrr.....finders keepers, losers weepers.......???? OK, OK....jeez....stop trying to turn me into a girly man......I miss YOUR bass playing. There!! I said it! OK??
Response: Hee hee!! Yep, that will do
From Jo C
Aglets! I'm sure you've blogged about that before.. Is this a test?!
Response: I think you're right - as in previously blogged. Part of an explanation about nerve endings unravelling as we get older, or something? And we can learn to help arrest that process, and even reverse it? Hmmm
From Beannie
Aglets. That's all I have to say right now! xxx
From Mark
Aglet. That was some weird trivia question from another lifetime ago. Keep the spirits up. Really missing the other half of my rhythm section!
Response: Ha! So now it's YOUR rhythm section??
From Katherine Davies
An aglet (or aiglet) is a small plastic or metal sheath typically used on each end of a shoelace, cord, or drawstring. An aglet keeps the fibers of the lace or cord from unraveling; its firmness and narrow profile make it easier to hold and easier to feed through the eyelets, lugs, or other lacing guides.
Kath xx