I hope you don’t mind me writing with a charity request but in 2 weeks I’m doing another walk with Sir Ian Botham across the Clent Hills in aid of Leukaemia & Lymphoma Research. Over the last 4 years since I’ve had Leukaemia I’ve done 2 of these walks and have raised £2500 to date. It’s very humbling to think people have been so generous.
This year Luca is joining me and he very much looking forward to being pushed across the hills in his buggy.
Please sponsor me. You can visit my fundraising page at Just Giving by visiting the link below.
I hope you don’t mind me asking but this is such an important cause for me. I have much to thank the Doctors, Nurses and researchers who develop drugs and have looked after me. They have afforded me life and Luca. I can’t ask for much more.
Big thanks for reading and I hope you are able to support me.
Great news that Newsjack on BBC Radio 4 is back. So I submitted a handful of one liners and it turns out I am still completely unfunny.
There have been so many withdrawals from the Government’s work experience programme the Catholic Church has officially endorsed it.
Donald Trump gives £10m to anti-wind farm campaigners. He has also given £5m to fart for freedom.
David Cameron, clearly influenced by Oscar success and popularity is looking to become an altogether different type of Artist.
Ironic that the historic third win for both Margaret Thatcher and Meryl Streep in their chosen professions were both met with utter ambivalence.
Bring on next week. If at first you suck at this, fail, fail and fail again 🙂
I’m still writing my regular Digital Jazz column for Starburst Magazine. However exciting developments! The magazine has returned in a printed format and an iPad edition. Digital Jazz is moving to the iPad as exclusive copy and I’ll be writing some features and interviews in the print edition. You will also catch me online submitting news to the main website.
I’ve posted links to my 2 final pieces for the old website and if you want to carry on reading please subscribe to the iPad.
Social Media Gremlins (November 11) – Click here
I started off with a bit of a rant on the minority of social media users being rude and abusing other people. Moving on to the Jamie Benning Star Wars documentary-commentaries, the Robert R. McCammon ebooks and finally the DVD of Silent Running.
SF Gateway and Encyclopedia Interviews (December 11) – Click here
Simply put interviews with Graham Sleight for SF Encyclopedia and Darren Nash from SF Gateway.
Hope you enjoy.
The drugs I take everyday keep me alive. I have Chronic Myeloid Leukaemia (CML) and my 100mg dose of a drug called dasatinib has put the cancer into remission. I’m 36 now and it’s been a 4 year journey, I work full-time, don’t consider myself ‘sick’ and am very, very lucky. The reason I consider myself lucky is because if I had been diagnosed today I would have less drugs available to me than there were available to me 4 years ago.
I started my treatment on a drug called imatinib, hailed as the “magic bullet” to cure cancer by Time magazine back in 2001. I soon moved to a high dose of imatinib because it wasn’t working well enough and after 3 years my consultant decided to move me onto dasatinib, a second generation of treatment which has evidently worked very well.
When reviewing treatment for a resistance in standard dose imatinib earlier this year the National Institute for Health and Clinical Excellence (NICE), a special health authority of the English National Health Service (NHS), rejected the use of dasatinib and higher dose imatinib because it considered them not to be cost-effective. It did however approve the use of nilotinib, another second generation drug, because the manufacturer offered a price discount to the NHS called a patient access scheme. Upon diagnosis this would have left me the choice of just one drug before a risky bone marrow transplant was considered. At the time I had the choice of two drugs and high dosage imatinib. I’d consider this a step backwards in treating CML.
Not content with restricting the choice of second line therapy NICE are currently reviewing first line therapy. They will be making recommendations on which, if any, drugs are to be made available on the NHS for first line use in CML. In the very worst case scenario they may not approve any, although I have been told this is very unlikely. It is likely that they will once again restrict access to these life-saving drugs by approving just one and basing their decision on cost rather than effectiveness.
It is important to consider that these drugs don’t buy a few months or a few years they buy your life back! Thanks to these drugs it is more than likely that I will die from something other than Leukaemia. The drugs I take that target cancer cells and shut them down are, what I believe, the start of the elusive cure for cancer. Yet a government body, which is part of the NHS and paid for by the taxpayer is trying to stop that progress in the name of cost effectiveness.
So last week I visited the Houses of Parliament. Mission objective: to take part in a CML Patient Lobby. The idea being to have a single day when patients could meet respective MPs, and ask them to take action by urging NICE to give positive guidance to all three drugs being appraised for first line treatment: nilotinib, standard dose imatinib, and dasatinib.
With support from Leukaemia Care, a charity based in Worcester, I went with a high moral stance and a very personal story to tell. It would clearly be best for all CML patients and families for their doctors to have the widest choice of treatments possible, in case of any intolerance and/or resistance by individuals to any one or more of these drugs. Hence the lobby wanted them all to be made available one way or another.
My fellow CML patients who also attended the lobby had travelled in from far and wide and included a gentleman who was in his 80s and had Leukaemia for 18 years! Only thanks to the wide range of treatment was he still active and enjoying life. We had all arranged private appointments with our local MPs but managed group discussions with Alan Meale MP, who was the sponsor of an Early Day Motion (#1831), and Alex Cunningham MP who is a member of the All-Party Parliamentary Group on Cancer. Both listened intently and agreed that they would look into ways to support us by writing to NICE and the pharmaceutical companies to ask for better patient access schemes. We also had a chance encounter with Lord Maginnis of Drumglass who was concerned about our case and told us he would be happy for us to contact him with a view to getting a question raised in the House of Lords.
My local MP Mark Garnier has been supportive in the past by writing letters to the Department of Health when NICE were debating second line therapy. Sadly all we ever got back were template letters from the offices of Earl Howe (Parliamentary Under Secretary of State with special responsibility for NICE) and Andrew Lansley MP (Secretary of State for Health). From their responses it felt that they were simply washing their hands of the situation. The population of CML patients who received these template letters all felt that NICE was simply a body set up by the Government to make unpopular decisions. Sadly even the Early Day Motion set up to draw attention to the issue was politicised. Out of the 43 MP signatures 27 were Labour, 5 were Liberal Democrats and 2 were Conservatives, the remaining 9 were made up from other parties.
Today Mark was really interested in finding out more about our issues and helping. He listened intently and asked questions. He was particularly concerned about the process NICE uses to make decisions. As CML is particularly rare, only around 550 people are diagnosed each year with it and the median age at diagnosis is around 60. So harvesting any research is hard because there just isn’t the number of people with the disease. The committee at NICE insist on a preference for a gold standard clinical trial model to make a decision, even though such a model is undeliverable in this case. NICE does not deny that these drugs are more clinically effective than their predecessors but their issue is that there is a paucity of acceptable data from international clinical trials and this serves to inhibit the appraisal committee’s confidence in giving a positive recommendation. In other words the drugs work but because NICE doesn’t have enough people to do a clinical trial to their gold standard then they won’t recommend.
Mark agreed that if this was the case it was concerning and he would be supportive of a letter to NICE to question their model. He also agreed to support my approaches to pharmaceutical companies asking them to offer patient access schemes and therefore reduce the cost of the drugs to the NHS. Finally he suggested we could ask written Parliamentary Question through him to get answers to questions that were previously ignored. In all he couldn’t have been more helpful and supportive.
The day was a great success. I think the group made a slight ripple in a rather big pond and we certainly gained some fantastic support from the people who run our country. I fear that this is just the start of the battle and although my drugs are unaffected by any new decisions this fight is for the people diagnosed today, tomorrow or next year.
Andrew Lansley promised a reformed NHS that would give patients, “real choice for the first time.” His promises have a hollow ring at the moment. The priority appears to be restricted choice and penny-pinching. NICE claims to be an organisation that is responsible for providing national guidance on promoting good health and preventing and treating ill health. Professor John Goodman, a world authority on Chronic Myeloid Leukaemia, stated when speaking of the NICE committee and their draft recommendation in a recent interview, “There must be a reason why intelligent people produce something that is crassly stupid.”
Darren Huckerby does it because he wants to, “interact with people you normally wouldn’t and read some funny stuff from folks.”
Darel Russel, “joined to keep up with pals and realised that I was not so anonymous. Lol. Love the banter and keeping up-to-date with social side of things.”
Gary Holt, “joined for a laugh really, always nice to get help to questions and advice about things like books and films.”
And Leon McKenzie has personal reasons, “I joined for my music reasons really, banter, my views and opinions. I like to be heard. Love me or hate me, I’m me. Haha!”
I’ve always fancied keeping a diary and it’s good for networking.
Yes this is the world of Twitter. It’s the place you can speak directly with your favourite author, film star, sportsman, as long as they deem your tweet worthy of response. For the record I tweeted all 36 of the people below and had just 4 responses so don’t get your hopes up. However for some of us just knowing what your favourite player or Norwich legend has been doing in their spare time is enough: travel plans, reflections of a game, charity work, inappropriate comments. Ooops yes it’s normally these comments that bring the headlines and the fury of managers.
QPR boss Neil Warnock on Anton Ferdinand, “I think he’s a twit for using Twitter. I don’t agree with it, but I suppose if you’re into that you have to take the rough with the smooth. I’ve already told him to come off Twitter”. Alex McLeish on transfer rumours, “It is utter nonsense. It is a phenomenon of the modern world – Twitter and Facebook – and it is not my world”.
You can understand why some managers would prefer their players to keep their comments and private lives under wraps and it’s understood Paul Lambert isn’t a huge fan of his players using Twitter. But this doesn’t stop them. Thankfully our boys appear to be pretty well behaved.
So this is less of a guide to using Twitter, you can find those all over the Internet. This is a directory of current and former players who talk the talk, walk the walk and tweet the tweet.
Owain Tudur Jones
NCFC Related Twitter Links
Norwich City FC
Norwich City Ladies FC
If I’ve missed any or you can confirm that any of these are fake please let me know and I’ll amend the list.
(I cannot guarantee the authenticity of these Twitter accounts.)
An article, recently written, for the now defunct Norwich City fanzine Kick It Off.
Once upon a time there was a goalkeeper who played for Manchester United called Gary Bailey and he was magnificent. My 9-year-old self was completely obsessed with this footballing God and to a certain extent the team he played for. It helped that be bore an uncanny resemblance to Charlie “The Cat” Carter who played for Melchester Rovers. I was an avid Roy of the Rovers fan and Charlie was their star man between the sticks. You could say I was slightly obsessed with goalkeepers.
As you would expect I had no connection to the Manchester area whatsoever and being 1985 this was way before Man Utd Inc. No, my love of the club was down to their magical number one. I collected Panini stickers and always ensured the United team was completed first. I watched them on TV and I was bought Manchester United gloves and hat for Christmas, primarily to keep me warm. It is still fair to say my commitment to the Red Devils was greater than the majority of their supporters.
I’d just started the new Panini album which covered the 1985/86 season with big stickers and excellent shinies. Not like the poor excuse for a sticker album they produce nowadays. No this was a man-sized album and I remember taking it to school in a separate bag, not the only one I might add. Playtime become a battleground of swapping; poker face on, “got, got, got, got, got, need, neeeeed”. Then trying to convince a fellow 9-year-old that three Peter Shreeves were easily worth a Norman Whiteside. Just why were there so many Peter Shreeves?
This was a golden time when transfer activity could happen at any moment, no more countdown or inflated prices. “Big” Ron Atkinson could do his business whenever he liked and transfer rumours trickled into the playground, quite unlike the current tidal wave of football news. I can’t remember who told me, perhaps they didn’t, perhaps I dreamt it, perhaps I’d read that Gary Bailey was born in Ipswich (which he was) and got confused. But Gary Bailey was being signed by Norwich. If I’d have had a clue I would have simply dismissed this as untrue. Bailey was being recognised by England and with a World Cup coming up why would he move to Division 2 Norwich? My 9-year-old brain didn’t care, if Bailey was off to Norwich then so was I, or was it Ipswich? They were both in the same division and sounded so similar. Thankfully my Granddad spent a very long weekend putting me straight, yes I was that close to being a binner. So Norwich it was.
The first place to start was my sticker album, sadly all division 2 clubs were afforded back then was a team shot and a half-size shiny club badge. I remember spending hours pouring over the team shot looking for familiar players, there were none. I read the club info over and over again worrying about the ground capacity which was under review and I belatedly celebrated the Milk Cup win the previous year, gloriously relegated at the same time. I revered Ken Brown for bringing my idol to Norwich and felt rather smug that I was the only Norwich supporter in Worcestershire as far as I knew. No turning back now.
It soon occurred to me that Gary Bailey was still playing for Manchester United. This was not part of the plan. It was too late. I was hooked on the Canaries much to the disdain of my Dad who knew at some point he was going to have to trek across the country with me to the promised land. I partly blame him. If he’d have encouraged me to support Blackpool like him this would have never happened. Sure I’d still be supporting a perennial underachiever but at least when people asked me why I supported Blackpool I didn’t give them the most embarrassing reason in World football. Why do I support Norwich? Because I loved Gary Bailey.