It is a scandal that almost 97% of people diagnosed with Pancreatic Cancer die within 5 years. 22 people a day die from Pancreatic cancer. Earlier, clearer diagnosis would reduce this.
Two years ago, I hadn't even heard of Pancreatic cancer. Then a life-long friend lost his wife to the disease. More recently a dear friend told me that she lost her husband also to Pancreatic cancer.
Pancreatic cancer is the 5th leading cause of cancer death in the UK. Pancreatic cancer has the worst survival rate of all cancers. 5-year survival is only 3%. This figure has not changed in over 40 years while deaths from many other cancers declined.
Pancreatic cancer could be termed 'The Hidden Killer'. Many of its symptoms mirror other less critical illnesses and therefore GPs often do not realise their significance. Symptoms can include jaundice, diabetes and gall stones and GPs may first treat these resulting in time being lost before the correct diagnosis is reached. By this time it can be too late to treat the cancer. This happened with both of my friends.
I have decided to try and change this and I have set up an e-petition online at
The aim is to have Pancreatic Cancer diagnosis debated in Parliament. To achieve this 100,000 signatures are needed. Nearly 300 signatures are needed each and every day to achieve this. The petition is available until 14 November 2012, which seems a long time but it will soon pass by. Pancreatic cancer diagnosis and treatment is a lottery.
There is something else you could do too. Whilst you're writing your Christmas cards, write to your MP. I have a website
with letters for you do download, fill in your name and address and post off. It needs to be a major issue not just today, not just Christmas, but until the detection and survival rate for this disease is improved.
Please help, 22 deaths doesn't seem that many, but if 22 people were being shot dead every day there would be a huge outcry in the media.
Please sign the petition and email all your friends and work colleagues and ask them to do the same.
Many thanks, KenC
Written by
KenC
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Thanks you very much! I fear that we have a long hard slog. We need over 300 signatures a day and we are averaging just 5. However, nothing is impossible if enough people spread the message. Sadly, more and more people are telling me that they have had the same experience with someone close losing their battle with pancreatic cancer because of late or mis-diagnosis and like me they hadn't heard of it until then.
It is too late for our loved ones, but perhaps for other people we can change the outcome. I do hope so.
For many people this Christmas will be tinged with sadness, but each signature may be a priceless present for the future.
Thank you for your support. I wish you and everyone else who has supported the cause all best wishes for Christmas and for a brighter 2012.
In the last 24 hours mid-day Christmas Eve to mid-day Christmas day there have been 23 more signatures! Thank you everyone who has signed. This is a fantastic Christmas present!
Hi Ken, I've signed it, put it on my Facebook site, and asked all my friends to post on theirs too ! When I go back to work next week, I will put it on my blog too, it covers all of the UK, we all want to make a difference, and our voices need to be heard, keep us updated with the total signatures ! Del x
Hi Del, thank you very much. We think this is fantastic. Since starting this thread, the number of signatures on the petition has gone from 191 to (at the moment) 283!!!! Before Christmas, we thought that it would be nice to reach 100 and now we even dare to hope we might make 300 by New Years day!
To everyone who has read this thread and signed, we are very grateful. We need to make a difference for all our loved-ones and you are all part of making it happen.
In just three hours, our New Years day hope has been passed! Dare we set a new 'target'? Thank you everyone for your tweeting, blogging, facebooking and emailing!
I've signed it and will put it on my FB tomorrow in case it get's missed this evening amongs all the New Year messages. Fantastic idea, keep up the good work
Maggie, this is a wonderful start to 2012. Thank you very much. However, the good work isn't mine...I just started the petition, it's the people - like you - signing the petition who are doing the good work!!
I've posted the link to my FB page today and will also email it to as many people as possible. Now I know the petition exists, I will do my utmost to raise awareness and get signatures wherever possible.
Thank you all of you who have signed the e-petition for Pancreatic cancer. Now have 465 sigs, double the number a week ago!! We still need nearly 320 signatures EVERY DAY until 14 November 2012, please text, email and retweet epetitions.direct.gov.uk/?petitions/22411 and help make it happen.
Quite a few of my friends have shared it on FB so, hopefully, this will result in more signatures. I intend to keep posting a link and emailing people to keep the momentum going as I feel so strongly about this
Thank you very much Maggie. I would like to see Pancreatic cancer become a major issue for our politicians in 2012 and it will only happen with the efforts of people like us who have very strong views and equally strong determination!
Early on, I had high hopes, then after the initial surge new signatures came less frequently and I began to lose heart.
I have written to my MP and various ministers and been disillusioned with the replies. I have written to my local papers and had some support and I have emailed as many regional and national newspapers as I can. I have emailed over 600 people that I know or whom I have done business with.
Just before Christmas when I started this blog, there were less than 200 signatures. The figure 191 seems to ring a bell. Over Christmas Eve into Christmas day, we went over 220. However, since you all took up the challenge, we have rocketed past 500 and I expect us exceed 600 any moment. All this in less than a fortnight!
Any fool can come up with the idea for a petition, but it's down to the texts, emails, tweets and goodness knows what else that each and every one of you has been doing. This is the power that you have in your hands.
Now I'm beginning to believe that we might just get the 100,000 signatures we need.
I've created a poster which highlights the issues of Pancreatic cancer using 'Pat Butcher' as a headline. I'm hoping to get it used at my place of work and I thought others might be able to do the same. If you'd like to have a look, it can be downloaded at pancreaticcancer-thehiddenk...
You should take credit for thinking of the petition KenC.......it would never have entered my head.
I've looked at the poster and think it's a great idea - headline draws people in out of curiosity and then the facts are there for all to see.
I think 100,00 is do-able if we all pool our resources. I am continuing to repost on FB and each time I do, someone else spots it and signs it and others share it. I'm also working on email circulation see where that gets us.
So many people have been affected by this cancer and I'm sure they and their families and friends would be happy to sign the petition - we just need to find them and highlight it to them !!
Keep up the good work - 630 signatures last time I checked
Pancreatic Cancer Action have been very helpful and put a link to the petition on their front page: pancreaticcanceraction.org/...
I'm especially pleased with the way people are able to comment. The experience of my dear friend Adele contrasts sharply with the excellent care Derek experienced and I feel highlights very well what we are striving to achieve.
I think we might need to have another big 'push' in the Spring to keep the campaign (for I now regard it as that) in people's minds. I have a friend who is press officer to a household name and I'm considering approaching his employer then to see whether he would lend support to us in a public way. He can only say 'No'!
Having watched the petition gain 500 signatures in a fortnight, it's difficult to know exactly where they have come from, but PCA added the link on New Years Eve, so I guess all those Facebook, Twitter and blog posts plus emails that we've all been doing too have all played their part. Every little helps, so thanks to to everyone!
I lost my husband to this dreadful cancer he was only 56 . He was diagnosed and had the whipple op New Years Eve 2008 but sadly lost his fight last year.This petition is wonderful I have signed this and passed this on to all my friends and family on facebook and they are also passing this on to as many of their friends as they can. I shall also be asking friends and family that are not on facebook to sign. Also my children are getting their friends to sign, so hopefully you can gain many more signatures. I wish you all the luck and I will carry on getting as many people as I can.
Hello Duchess. I'm sorry to hear of your sad loss. Thank you for your support and the efforts you are making to spread the word about the petition. I hope that collectively we can make a difference and reduce the sad loss of life that seems to be the norm with this dreadful cancer.
Ten days since the last up-date. We're now at 828 signatures. A few days ago, I emailed everyone that I'd previously contacted - 664 people in total - which has resulted in a few more signatures and a promise from our local paper 'of another push'.
Yesterday our petition reached the 990's and I hope it would pass 1,000 overnight. No such luck, but early afternoon today we passed the magic number. So we are 1% of the way to our target, please remind all your friends, neighbours and colleagues about our petition.
Pancreatic cancer will claimed the lives of over 1,500 people since the petition was launched in November.
Hi Ken & everyone else interested in the epetition
I have drafted an email that I can send to anyone I find an email address for, not necessarily people I know. I tell a little about my husband's story and include a link to the epetition. I ask people if they are prepared to sign it and also forward it on to their contacts in their inbox as I feel the only way we will get 100,000 signatures is if we can get an email circulating widely. I've managed to get 220 emails out in 2 days and will keep on sending it for as long as I can find email addresses. If anyone would like me to send the email to them for onward transmission, please send me a note of your email address either by private message or on this blog. We have to fnd a way to do this !!
Maggie, this is brilliant. I've been doing exactly the same and although we have to accept that not everyone will want to sign, even if we get just a handful of extra signatures, then it might just maker a difference!
I've also written to all my local papers with some success. Two of them wanted to turn it into an article about my friend who lost her husband but I said it would have been too painful. However, it still got some publicity and one reported has become quite evangelical about the petition!
I emailed Dr Hilary Jones (off Daybreak) and he has just tweeted about the petition - he has 9,251 followers on Twitter so, hopefully, a few of his followers will sign up !
I've been keeping a spreadsheet on the petition. Anyone can download a copy from pancreaticcancer-thehiddenk... and use it themselves. It's in MS Excel format. If you update the 'Total Signatures To Date' figure (don't forget to click the 'save' button afterwards) it shows how well we're doing, what the daily average is and what it needs to be with some other figures which you can use when writing or emailing people.
i think what you all are doing is amazing and i really believe that this can be achieved !! i lost my mum to this hideous disease and really hope that its not another 40 years of the same statistics , i have shared the link on facebook and twitter and have friends doing it too and if you have any other ideas on how i can help let me know xxx
Kelley, it's very kind of you to help spread the word. This really is a team effort and it's starting to seem achievable. We struggled to get the first thousand signatures, but now the petition is really getting noticed.
I think we'll have to come up with new ways of keeping the petition going by summer but at present I don't have any clear idea how. Watch this space.
I've had an email this evening suggesting a local BBC reporter may get in touch - not sure if this will be radio or TV. If they do, am I okay to give your name as the petition originator? (given that it's on the petition) - I have also made reference to you on the FB page information - hope that's okay. Would be good if we could get something on the radio/TV to try and keep up the momentum we've gained in the last few days
A guarded 'yes'. I don't want any publicity to be about me*, more about the petition. The focus has to be PC and the damage that is being caused by lack of early diagnosis. That said, any publicity has to be worth considering!
Keep us posted!
KenC
*after all, the petition would have been pointless if over 1700 people didn't think it was a good cause. I just happened to be the one who started it
Okay Ken, I understand completely, my initial reaction was to shy away from having contact with the BBC but then I thought that if we are going to do this we need to take any opportunities that come our way.
I am much more comfortable with emailing, tweeting and facebooking but a local guy who is very involved with the media did a lot of tweeting and put our petition on his news feed and kept it at the top for a day or so and encouraged people to sign and it was him who offered to put the BBC reporter in touch with me. I was just giving a bit of thought as to what I might say should they get in touch and I didn't want to give the impression that I had come up with the idea of the petition .......I am merely doing my bit to generate as many signatures as I can find.
The last couple of days have been brilliant and the Facebook page now has 61 members - one of the posts I put up was shared by facebook.com/pages/Baroness... - I'm trying to work out if this is a real or fake page - goodness knows where the Baroness has picked this up if it is a real page. I've been trying to find an email address for her but so far I've only been able to find a general email for a law firm she works out of so I've sent something there.
One of the FB page members got Sir Ian Botham to tweet the link yesterday and a PR Guy in London tweeted it after I emailed him when I picked up he had been a friend of Sue Carroll who had lost her battle with PC on Christmas Day - he emailed to say he will do all he can to help. Dr Mark Portas also tweeted for us yesterday (both his parents had pancreatic cancer)
Update - Twitter has been fab tonight. Managed to get Carol McGiffin to RT (Loose Women) she has 200,332 followers. Also got a RT from Ben Richards (The Bill / Footballers Wives) - Ben has 9,977 followers. Sadly Ben has recently been diagnosed with PC - I do hope he has been caught early. These two RTs generated a further 12 immediate RTs from their followers. Let's hope this translates into signatures. Aiming to get another 300 emails out over the weekend - had a good few replies on the email front. One Cancer Centre has said they will direct their patients who may be interested to it and a Cancer Researcher at Barts has replied along with several other medics and had a good reply from someone at Liverpool Reseach so I think the email may be gathering a bit of momentum now. My local paper want to do a story next week. Nothing from the BBC yet but, all in all, last few days have been productive I think. Just have to find another 98ish thousand from somewhere !!
Maggie, this is excellent. I just don't know how you manage to find the time! I hope you take time out to eat and sleep. I know this is as important to you as it is to Adele and me as well as my friend Arnold - Judith's husband - and to everyone else who has been affected by PC.
Still in the middle of my move, but once I'm settled, hopefully within a few weeks, then I'll write that important letter that we discussed.
Yes I'm taking time to eat and sleep - my ironing pile is in danger of taking over the house though ! The way Kev fought so bravely to stay alive as long as possible and his positivity despite knowing he was dying will stay with me forever and so it is very very important to me to raise the profile so that future sufferers may stand a better chance of surviving. Hope the move goes well and let me know how you get on with the letter.
Just got a share on Facebook on the Pancreatic Cancer Research, Information and News page. I emailed them and they have shared my email in its entirety on their wall (it metions you as the petition originator Ken). Thank goodness for the internet - goodness knows how we would find enough people to sign without it !
Yesterday I learned that another friend had been diagnosed with Pancreatic cancer and has been told he has 18 months (I assume the phrase "if you're lucky" didn't figure). Today I read Paul O'Grady saying how Sue Carroll's death had affected him. I emailed and tweeted him about the petition.
Really sorry to hear that Ken, you must be absolutely devastated that another of your friends has fallen victim to PC.
Did you get any response from Paul O'Grady ? I haven't been able to get many emails out this week as I have been extremely busy at work but will be back on it next week. My local paper ran a story on the petition - don't know if you got my private message but they were hoping for a quote from you Ken. I have had contact today from the local BBC TV News so I am just about to email them back, hopefully they will run a story. I've had a reasonably good response on Twitter from Kate Thornton, Ian Botham, Shan Cothi, Dr Hilary, Dr Mark Porter, Carol McGiffin so I will keep on sending tweets. Not sure if I said but Fiona Phillips also ran it in her "Your Shout" column in the Mirror a couple of weeks ago - copy on the Petition Facebook page. I have a few more ideas up my sleeve which may or may not prove successful but will give them a go in the next few weeks - I have a good feeling we may be able to do this !
You seem to be unstoppable! I did email the reporter and left him my mobile number but he didn't call. I have had a response from Paul's representative and I'm fairly hopeful of some support.
Sorry for the delay in replying Ken......a quickupdate - Nic Dakin MP has offered to try for an Adjournment Debate in the House of Commons (he lost a friend to PC so has an interest in this cancer) - this is a short debate (an hour or so) it is not voted on but a Minister does reply and is a good way of raising the profile. Nic says it's a bit of a lottery because there are always more requests for such debates than time allocated but he said he is prepared to be persistent week after week. He has also agreed to put a link to the epetion on his emails, Twitter and Facebook. Had a couple of good retweets last couple of days - Tim Lovejoy, Steve Claridge and Les Dennis. Hopeful of a slot on BBC Look North next week. Anymore from Paul's representative ?
Will keep you updated. You might like to join the Facebook petition page as I try to keep that updated daily facebook.com/pancreaticcanc...
Hi Ken, not sure if you've picked it up from anywhere but we (Sue Ballard and myself) did Radio Humberside interviews on Friday morning and a feature on BBC Look North which ran at every news Bulletin on Friday except the very last one of the day - almost at 3,000 signatures now. Still a long way to go but we've still a good few months too !
Thank you JeanetteG. Even one letter can make a difference. At the moment, the petition is flagging despite all the efforts of people who have written above. One message to a friend, relative or work colleague may bring a single 'signature' or dozens from their contacts too. Every time you tell someone about the petition we're a step nearer getting something done about this awful situation.
been diagnosed with T4 inoperable pancreatic cancer...He is 62 years old, and up until a couple of...
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