Please take a look at the front page of The Times - thetimes.co.uk/tto/news/
Of course I needn't even mention that this important project does not cover the whole of the UK and those of us living in the devolved administrations will not be represented. Today I'm talking to my oncologist about my imminent move to a room in London. I'll ask if I can have my tumours back from the Wales Cancer Bank. No use to me there.
Well I would but a while back I swore to contribute no longer to Murdoch's evil empire so I can only read the first few paras. What does it say?
I am sure the move to London is wise. Even in England some of us travel to a centre (Leeds, London, Manchester) that's many miles from home. I have also thought of asking for my tumour back, but if it still exists it will be probably suspended in formalin a la Damien Hirst's cow. Could I possibly sell it as a piece of unique bio-art???
Hope all goes well at meeting.
Cx
Dear Chrystyn
This is as much as I can read as I don't subscribe to The Times either:
Cancer data revolution will save thousands, Martin Barrow Health Editor
Published at 12:01AM, June 12 2013
A revolution in the treatment of cancer with the potential to save thousands of lives every year will be announced today. Millions of patient records, with details of each individual cancer and how it is treated, have been harnessed into a single database to create the biggest cancer registration service in the world. For the first time cancer specialists across the country will have instant access to detailed clinical data, including the way tumours respond to different types of treatment, to inform the way they deal with each new case. The database will expose variations in the quality of care in different parts of the country and even between individual cancer units and oncologists. It paves the way for highly personalised treatment of each cancer patient, helping doctors target genetic mutations with a…
It's an interesting thought isn't it people having to travel round the UK to access hospital treatment. I wonder how the finances work and whether the larger centres invoice the local health board for the cost of treatment. I probably have less distance to travel than some of you in England - and in 2015 work will start on the high speed rail network to link Cardiff and London. xxx love A
Thank you Annie for this info love x G x 
It proves that oncologists and treatment centres have a differing view on how to tackle individual cases and some resort to the text book method of dealing with the disease. I am sure some oncologists are brighter than others and may be willing to try new ideas. This central database can only be a good thing. Love Paul xx
The anti-database nimbys and data self-protectionists will probably ensure that this is made useless, as usual... Shame, it has potential. Information is power.
Thanks Annie, for spotting it...
Love
Sue
Xxx
Well surely before launching this English database someone discussed it with Wales, Scotland and Northern Ireland. How pointless to have a database for only one part of the UK. No doubt Wales turned their back and said they'd do their own thing but I've experienced this before. They won't participate in joint projects and can't afford to do them so we just don't have access to this stuff.
I've had 20 years' experience of this working in education. As a patient now dependent on the health service. I'm moving to a place I can be part of this. xxx A
No database is useful if it only has partial info in it - the concept of universality is core, yet often forgotten...
Hi, Annie.
I'm sorry you have to move from your home to receive a better treatment. I hope now you have access to Avastin and to the information in this new cancer database created in UK.
Hugs,
Fernanda
Thanks Fernanda. Avastin isn't guaranteed anywhere in the UK but I at least have a chance it will be funded if I relocate to England. Here in Cardiff I have no chance at all.
The database is only for England. It's a fantastic resource but again only for people who live in England and not those living in Scotland, Wales or Northern Ireland. You must think we're a strange lot over here!!!
xx love Annie
If you are intending to find a room in London, I would recommend you look in the Sutton, Surrey area...the town is not the best place in all the world but property and rentals are cheap for a location so close to centre of London and the Royal Marsden is in South Sutton. I have had the most brilliant treatment and care there. It's a courageous step you are taking, I hope it gets you some satisfaction at last. Good luck.
That's so lovely of you to have thought about my predicament and to offer such practical advice on property rentals. I'm far from courageous. I'm a Londoner but have been living in Wales for 39 years so the move is hopefully quite straightforward for me. The first property I bought was in Sutton many years ago - probably because it was the cheapest place in S London. I recall it was £1 less than £10k.
I've spoken to PALS at the Royal Marsden and my treatment will be given at Chelsea. Luckily I have 3 addresses in London so between them I should be OK.
What is unfair is that the majority of women with Ovarian Cancer in Wales won't have a choice. As you say, a relocation could be daunting. I would never say it's impossible but for some the disadvantages would outweigh the advantages.
What is really funny is that many people here think the same as me but they don't speak out. Our government is unwieldy and expensive, out of touch with the people, inefficient, and worryingly elitist. Politically the situation is very confusing as I have an MP in Westminster who can't do anything about the situation in the Welsh Assembly, and I have an AM (Assembly Member) who's hardly likely to rock the boat as reform would mean losing her job and income.
Given I'm critical of the governance of Wales I think I owe it to the people who are pleased with it to get out. The plus is that I shall get better health treatment. It seems to me that's win win but I still fear something might go awry and I'll be stuck forever in a region with sub-standard health care. Hilarious isn't it for the capital city of Wales!!!!
Perhaps we'll meet up when I'm in the Oval and you're in Sutton? xxx Annie
Meeting sounds good but I have to warn you I'm pretty ancient - also retired from work in Education. I will happily send you my email address if you wish.
Best.
I'm no chick myself and I'm not ageist.
I'd love your email and we could compare notes. What sort of role did you play in education? I worked for the funding body that sourced all further education in Wales, I then moved into the education aspect of economic development in SE Wales, and the last 10 years of my career was at Cardiff University with a responsibility for widening access and recruitment pan-Wales.
The last twenty years have given me a great insight into the poor standard of secondary and tertiary education in English-medium schools in Wales compared to schools in England. An insight also into the turgid workings of our assembly - now, alas, promoted to a Government.
Now I'm subject to the inequalities of the health care service in Wales. I can cope with poor standards of education as you can pay a private tutor. I can't accept I have less years of life because of where I live.
Please do PM me.
Love Annie xxx
Good luck Annie.XX
Barbara
Thanks Maggie. You might just want to delete your comment as it has your email and this post is visible to everyone given it's political nature I wanted anyone to be able to read it. I'll email. xxx love Annie
cancer returned a 5th time
Time taken to start treatment
Early on in treatment for primary peritoneal cancer
New ovarian cancer diagnosis
